Wednesday, December 28, 2016

The Fear Within: I am Here for You

Sometimes the changes are so insidious, I'm not aware of them unless I think back to a prior time and do a comparison. As we get ready to head to Florida, the comparison to last year's trip is pretty interesting. There is more confusion and the language changes are profound.  As Jim's dementia progresses, the more convinced I am that it is  Primary Progressive Aphasia, either Semantic or the Logopenic subtype. I guess it really doesn't matter, but I do have a clinical curiosity.

I'm getting better at preventing upsets. There will always be moments of upset that catch me off-guard. And I am working on improving my emotional response to these  moments. But the key to prevention seems to be:

1)  When I hear him speak, I drop what I am doing, go to him, and give him my full attention. It used to really annoy me that I would hear him speaking to me 3 rooms away. (Why can't he walk over to me?) This doesn't annoy me anymore. I realize that he is doing the best he can, and I need to accommodate the deficits he has in communicating with me.

2) Body language and tone of voice are critical. Both should reflect full attention, calm, and a loving presence.

3) A hug, hand holding, sweet kiss on the cheek all do wonders to calm the waters. They send a message: "You are safe, loved, and adored. I'm here for you and we will figure this out."

4) Avoiding TMI. Too much information is absolutely counterproductive. Short, to the point answers are the best. Long explanations simply cause profound confusion.

5) Proactively create an environment that will be calming. This means avoiding large crowds and organizing social situations in a way that will minimize the stress. When we are with friends, family, my focus and attention needs to be on Jim. If I get too wrapped up in a conversation with another person, my guard is down, and all of the things I mentioned above do not happen. Not good.

I'm very happy that I have come to this place of understanding in my relationship with Jim. It really boils down to my acceptance as Jim's caregiver. I'm embracing it, and running with it. I'm no longer fighting it. I'm far from perfect, but I'm definitely getting better at it.

We are in the process of packing, getting ready to head South for 3 months. There has been a lot of confusion the last couple of days, but fortunately no real upsets. The following conversation illustrates how I am getting better at all of this.

Me: " Do you want to pack your favorite short sleeve gray t-shirts?" (This is his staple in the summer.)

Jim: "No!!! I don't need that !!!"

Me: "OK"

The old me would have gone to great lengths to explain why he would regret it if he didn't pack his favorite shirts. An hour later he came to me and suggested that I pack the gray t-shirts for him. If he hadn't done that, my plan was to put them in my luggage surreptitiously.

I read an article the other day from the Alzheimers Reading Room. It described the fear that folks with dementia have, and that the fear often gets manifested as anger/anxiety. This makes sense to me. As I try to put myself in Jim's shoes, I can't imagine what it must be like to live in a world of confusion, a world where things do not make sense. Of course he is fearful! Who wouldn't be? I always want Jim to see me as someone who will help and protect him.

Jim's confusion about things is definitely worsening. This morning he wanted to know "whose house is this?" and "who owns this house?" I think this stems from the fact that we will be renting a condo for 3 months. Sometimes he transposes facts from one situation to another. I reassured him that we owned this house, that this is indeed our house.

He wondered about our furniture. "We shouldn't leave it here, should we?"

I know that by leaving for 3 months there is a greater likelihood of confusion for Jim. I've considered the possibility of not going, but that would have it's own set of consequences. Jim has been talking about escaping the winter and so looking forward to the warmer weather.

I imagine that over the next several years I will be faced with a lot of decisions where the best answer for Jim is not always clear. So, I'll continue to move forward knowing that I have an escape hatch. If things become too much for Jim, I'll simply say that our lease is up and it is time to go home. I don't think he would know the difference.

We leave Friday, and will do two overnights to reach FL. Jim almost never wants to drive now, so I expect this will not present itself as an issue. It will be reassuring to both of us that our friends (whom we socialize with locally) will already be there.

Thanks for stopping by. As always, it helps me to put my thoughts into words. Wishing all of my readers a Happy New Year.

Thursday, December 22, 2016

I Went to Wegmans by Myself

Well, I know it is a silly title for a post, but it sums up the joyful moments I had yesterday. Jim went to his Wednesday lunch with the guys. I ended up going to Wegmans to do some last minute grocery shopping for the holiday. I walked into Wegmans with my cart, and immediately realized I felt free! Free to shop, free from worry about Jim. I could take my time admiring the giant Honey Crisp organic apples that I love so much. I could gaze at the wonderful in-store whole grain breads, carefully picking and savoring my choice.

I immediately sent a quick text to my friend Amy "I am at Wegmans ALONE!" followed by a smiley face. She knew exactly what I meant. The experience probably sounds trivial to most, but it is a reminder to me of the "high alert" status I am in most of the time. That is not a complaint, simply an observation. It actually is a good thing. I believe that by staying in "high alert", I'm avoiding the pitfalls of letting my guard down when I am with Jim. It helps to prevent anxious moments and keeps things on an even keel.

The times when I must be most on guard are the times when other people are present. When others are present, it is a bit of a distraction for me, and therefore I am not as focused on what Jim might be thinking or feeling. Hence, the likelihood of an upset.

We are scaling back on our Christmas celebration. Jim and I no longer exchange gifts. Removing that expectation was the right thing to do. He no longer remembers birthdays, anniversary etc. For Christmas day we will have an open house between 1 - 4. Family is welcome to stop by. The focus will be on time together, not on presents. It all feels right.

I'll have some prepared food, nothing fancy. Mostly prepared by Costco or Wegmans. It just feels so much easier this year. In years past it was a formal dining experience, lots of homemade food, extra tables and chairs set up etc. With an open house, it will be much more casual, fewer people staying for shorter periods of time. Jim is actually looking forward to it.

The decline in his ability to speak conversationally still catches me a bit off guard. Before it was almost always pretty easy to figure out what he was referencing. It is getting harder to do so. Simple conversations are fine. But if he is trying to convey something to me, he often struggles mightily. He gets a little frustrated by this, but not as frustrated as one would expect.

Jim: "You know...." (long silence; I try to give him plenty of time to formulate what he is saying.)

Me: "Are you wondering about lunch with Mike?"

Jim: "No........." (Another long silence. I try to keep my body language quiet and comforting.)

Jim: "I don't know.....I don't remember what I was going to say...."

Me: "That's OK, you'll think of it later."

Jim: "Yeah..."

 This blog and all the wonderful readers who stop by are a source of comfort, kindness and inspiration. And so as the holiday unfolds before us, I am sending lots of love and warm wishes to all my blogging friends.



Thursday, December 15, 2016

Emotional Closeness versus Distance

Today is typically "mom day", but I saw the forecast and decided to help her yesterday instead of today. We live in an area with some brutal winter weather. Our metropolitan area averages between 110 - 120 inches of snow each winter. The plows and sanders keep up pretty well with the snow covered roads, but the wind, visibility, ice, and the occasional reckless driver make driving this time of year hazardous to our health. North of us, it is more like 300 inches each winter; it is a rural area with lots of small towns and villages. I don't know how they manage. For the young and hardy, I guess.

It is only 12 degrees Fahrenheit today, with a low of Zero! Wind chill will make it feel much colder. A good day to stay inside and keep warm.

My materials arrived for the Leaf Study. It includes an 8 inch tablet for video conferencing and a workbook with reading material and activities to be done on a weekly basis. Each week, there is a video conference with the assigned facilitator. I'm very hopeful and really looking forward to these sessions. The goal of the intervention is to provide the caregiver with coping skills to deal with the stress of caregiving.

I continue to learn as I go along. I seem to be doing better at preventing and minimizing upsets for Jim. It's not always preventable. Sometimes I just don't see it coming. When that happens, it is up to me to choose how to respond. The hardest part for me is not personalizing the hurtful things that are said.

Years ago, fresh out of college I took a job as an aide at a developmental center. I worked on a unit with fairly high functioning folks, but who because of their behaviors were institutionalized. (As a side note, the developmental center was closed about 15 years ago. All services are now provided in smaller, community based setting. Win-win for everyone involved.)

Anyway, I remember the challenges I faced working as an aid. I actually got quite good at preventing negative behaviors, calming techniques etc. I never personalized what was happening, simply viewed it as a function of their developmental disability.

Why can't I do that with Jim? I know why..... Not personalizing an interaction requires an emotional distance from the person. How do you do that when this is someone you have loved your whole life? These are just rhetorical questions, I know there are no real answers.

There are still plenty of good times, silly times and fun times. I think part of my survival will be to focus and remember these good times, and try to compartmentalize the bad times.

There continues to be a decline in language. Almost always, I am able to figure out what he is trying to say by paying attention to the context, prior conversations etc. Once in a while I get stumped. He usually doesn't get too bothered by it, just says something like "I'll think of it later."

Sometimes his perception of an event is quite off. And usually the perception is a negative one. We had a conversation the other day with someone we both know. The conversation was light hearted, a few laughs, very pleasant. The following day he commented that the person was rude and mean to him! I have to be very careful how I respond to something like this. If I say that I remember it differently, he is likely to become angry. It's always a balancing act, and in the end, it has to be what is best for Jim, keeping him safe, happy and content.

I had a great phone conversation with a very good friend of mine recently. I call it friendship therapy! We managed to minimize talking about Jim, and instead I was able to hear about what is going on in her life, and latest news about people we mutually know. It was wonderful. The friend and family connections keep me going.

Being able to write what is on my mind is also very helpful to me. Just organizing my thoughts, typing the words, helps me to process and work through some of the tougher issues. So thanks for stopping by. I so appreciate each one of you!

Thursday, December 8, 2016

Competing Needs

I've written before about my elderly mom who lives about 40 minutes north of me. She is mentally very sharp, but pretty limited with her mobility. She has chosen to stay in her handicapped accessible apartment in a small rural town that she proudly calls home. All well and good, but it has been a balancing act to make sure her needs are met, and to make sure she is safe.

She gave up driving quite some time ago, so she is totally dependent on the help of others for groceries, doctor visits, banking etc. Once a week I faithfully spend the day with her and help her with all of these tasks, including lunch out. She so enjoys it. The socialization is as important as the errands that we take care of.  When I leave for FL, my brother arranges to have every Thursday off from work so that he is able to make the 90 minute drive to help her with all of these things.

Thursdays are never easy for Jim, as he doesn't quite know what to do with himself. He also tends to worry the whole time I am away. I've thought about bringing him along, but it really would not work out. He is not patient with waiting, boredom, delays etc. which pretty much describes my day with mom. So far, I have made this work by calling him every hour or so just to check in. He looks forward to the calls and it is reassurance to me that all is well at home.

Today was mom day, but wouldn't you know it, lake effect snow is coming our way. I started out early this morning, and the further north I went, the worse the visibility became. It just didn't seem safe to me, especially since our days our long (5 - 6 hours), and I knew the lake effect would just get worse. I pulled off the highway to call her and tell her that due to the weather we would need to reschedule our trip. Fortunately she has plenty of food, with a well stocked pantry. Her response to me:

"Well, it's up to you. You're the driver. It's not snowing much here. But it's up to you. You decide."

I knew she was terribly disappointed that we couldn't go today. But I also knew I was making the best decision for everyone involved. Including Jim.

Where we live, snow storms are inevitable during the winter. This is one of the reasons we are so happy to escape for 3 months. I remember that the last two years that I worked (prior to my retiring) Jim was especially anxious with my travel back and forth to work. Even just a few snowflakes would have him worrying and calling me frequently at work, telling me I needed to get home. At the time, I didn't fully appreciate what Jim was going through. I know now that his anxiety was getting the best of him as he worried about me traveling back and forth to work.

When we return in the spring, my plan is to ask my older (retired) brother to help more with my mom. I'm sure he'll be happy to help. He lives quite a distance from her. Selfishly, I'd love to see my mom in an assisted living situation. It would make things so much easier for everyone, but I know that she is not ready yet to give up what independence she has left.

There is this saying, maybe you have heard of it before...."Everyone listens to the same radio station. WII-FM. What's In It For Me." I know it sounds cynical, and of course it is not true all of the time. But  this perspective has helped me to better understand and to be more sensitive to folks who find themselves in the middle of a WII-FM moment.

Competing needs: Jim's, my mom's, and my brother who has some disabilities. They are all just trying to get by, trying to survive, trying to maintain an equilibrium in their life that can keep them happy, safe and content. And then there are my needs too. I'm looking at 2017 as a time to find a better balance.

My trip early this morning inspired this post. I was having a hard time disappointing my mom, but thankfully was able to put it all into the proper perspective. I'm just doing the best I can given the circumstances.

Thanks for stopping by. I so appreciate each and every one of my readers.

Wednesday, November 30, 2016

Some Hope for the Future

Jim and I are in the process of changing our health care provider to a local gerontologist. Jim has been followed by the same doctor for more than 35 years. The doctor is in his early 70's, and I'm guessing close to retirement. My personal physician was actually part of the same medical group as the gerontologist, so the transition for me was easy. All my records were accessible electronically, and I was able to get a "new patient" appointment fairly quickly.

For Jim, because his transfer of care is coming from a different medical group, it is taking much longer to get him in to be seen. It just was not possible for this to be done before we leave for 3 months. Jim has one more appointment with his physician in a couple of weeks, and then when we return in early April he will transition to the care of the gerontologist.

At first it bothered me that I couldn't get Jim transferred before we left. But I'm realizing that it really works out better this way. Jim is easily upset and anxious by any changes. To start a formal geriatric evaluation with a new doctor, just before leaving for 3 months just didn't make sense. Especially since I anticipate testing, evaluation and likely new medications. All of this will be much easier to handle once we are back home; not under the pressure of the holidays and preparing to leave for FL.

I had my initial "new patient" evaluation with Dr. S. I love her! She is just as I remember her from about 10 years ago when she evaluated my dad and diagnosed him with Lewy Body Dementia. She said she remembered me, which surprised me too.

She is clinically very smart. And, she has the BEST bedside manner. So kind, thoughtful and patient. I am fortunate to have very good health. Because I have no acute health issues, the majority of my appointment I spent talking to her about Jim. It was a wonderful opportunity to set the stage and pave the way for his first meeting with her.

She will be evaluating him over two separate appointments. Blood work, imaging etc will be done. She expressed great sensitivity regarding the fact that Jim does not recognize that he has any limitations.

I cried on my drive home. They were tears of relief and hope. Relief that I was finally able to talk to Jim's (future) doctor about my concerns. And now I have hope that there will be some help for Jim and the challenges he will face during this next stage of his life.

Our Thanksgiving day went reasonably well. We enjoyed spending time with family. The next day, Jim asked me "When is Thanksgiving?" I gently reminded him that yesterday was thanksgiving and then gave him some details of the day. His reply: "Oh, yeah". What still surprises me is that this lapse in memory does not bother him at all. But that is a good thing, I think. Better for him to be oblivious about it as opposed to upset, depressed that he can't remember.

I've written before about how difficult it has been for me to leave the house without Jim. It's a combination of him wanting to be with me, and Jim feeling anxious if he is home alone. The detailed notes I leave help, but it still bothers him. Thursdays are especially problematic, as my mom needs my help for groceries, errands etc.

I'm thinking about hiring someone to spend time with Jim. I have a couple of guys in mind. One is the son of a friend of mine whom I could hire under the guise of helping with yard work etc. Jim could "supervise". The other guy is a good friend of Jim's. I could hire him to come over to hang out, or even to go out to lunch. I'll likely start this in April after we return home. This would provide me a couple of times a week when I could get out of the house without worry. It would free me for support group, helping my mom etc.

Well, thanks for stopping by. It always feels so good to put my thoughts into words. As always, thanks for listening.

Saturday, November 19, 2016

What I Didn't Know

I'm still learning. I wish I knew everything there is to know about dementia and cognitive impairment, but of course I don't. I am grateful that I approach this journey with an open heart and an open mind. I truly believe that it is the only way that I can be of help to Jim as we travel this dementia road together.

Jim has been going to the same dentist for many years. The dental practice was about a 40 minute drive from our home. In addition, Jim was becoming less happy with the practice. I don't know the basis for his dissatisfaction, as he had a hard time clearly articulating his concerns. He drove to his last appointment 6 months ago.

Given the issues with driving and his increasing unhappiness with his dentist, I suggested he switch to my dentist. Much closer, and her practice is great. She specializes in gentle dentistry. The appointment was made. I called ahead of time to make certain that the dentist, hygienist, and office staff knew about Jim's dementia. I thanked them ahead of time for their patience and understanding.

Jim takes very good care of his teeth. We didn't expect much at the appointment, other than some x-rays that were due, routine cleaning, and check up by the dentist. Jim asked me to come into the exam room with him, which I was glad to do.

It was just short of a disaster.

The x-rays were "painful" (his word) as he held the x-ray apparatus in his mouth. The cleaning caused additional pain for him, and he was quite vocal about it. I felt bad for the hygienist. She was on pins and needles from the moment Jim started insulting her. This of course made it worse, as her hands were shaking and she was having difficulty manipulating her instruments because of her nervousness.

Jim called for her to be fired. He complained loudly to everyone who could hear about how she hurt him badly. Once home, he insisted that I call the office and demand our money back. And, he started talking about a lawsuit against the hygienist! Oh my.

I fibbed, and told him that we were reimbursed for the cost of the visit. Regarding the lawsuit, I started talking about the thousands of dollars we would need to pay, for a lawsuit with an uncertain outcome. He let that drop. But he was still so angry about the hygienist. I appeased him by telling him that I was certain she would be fired.

I know that sounds crazy, but what else could I do? My goal became one of helping him to get to a place of calm. We're still not there yet, but it's better.

Here's what I didn't know: dementia alters a persons perception of pain. They experience pain at a higher level than those without dementia. MRI's have verified this with areas of the brain that light up when someone experiences pain. The research showed that someone with dementia is much more sensitive to painful stimuli. You can check out a very interesting article from Science Daily here.

If I had known this, I would have asked for pre-treatment pain medication. He somehow made it through the appointment, albeit very unhappy and pretty angry. His teeth are perfect, and he needs no additional work, thank goodness.

And it's not over yet. Apparently the hygienist slightly nicked an area close to the gum line. I'm guessing it occurred when he was moving around in the chair, combined with her shaking hands. He complained mightily for 2 days. I honestly couldn't see it. I called the office and arranged for the dentist to look at it. She showed me with the magnified mirror the tiny nick that was causing him so much pain. She compared it to a nick you might get from a sharp potato chip. She reassured him, advised tylenol, bland diet and warm salt water rinses for the next few days. Every day, he has me look in his mouth to check on the progress, and this of course triggers another rant about the hygienist.

There was a silver lining in this experience. The dentist and all of her staff were wonderful. I was of course mortified at the cruel things he was saying to the hygienist. But in spite of his melt down, everyone treated him with the utmost kindness and respect. I will always remember and be grateful for that. I have written a thank you note to the staff that will go out in tomorrow's mail.

The other day I had my own doctor's appointment. It was for 3:30 in the afternoon. I did my usual note, stating where I was, when I would be home, and wrote down my cell number for him to call if he needed me. It is now getting dark here pretty early. I actually got home at 4:50 (10 minutes earlier than I wrote on the note). He was pacing and a nervous wreck.

"It's dark out! Something could have happened! I almost called the police!"

To his credit, he did call my cell phone, but I did not hear it! It was in my purse, and there must have been competing noise that prevented me from hearing it.

So, it has been a rough week for Jim. But it has been a week of learning for me, and for that I am grateful. The last couple of years his response to minor discomfort has always seemed overblown to me. I guess I just chalked it up to a psychological exaggeration, perhaps fueled by anxiety. And maybe anxiety is a part of it, but now I know that the pain is real and is experienced at a higher level for Jim, than it would for me.

I did not make it to the support group this week. After the rough week for Jim, I just didn't dare leave him again, especially since it was an evening group. I don't know what I am going to do about that, but I will figure it out.

On the lighter side, I was experiencing a very strong hot flash (yes, still having them after all these years!) and I told Jim I was going to step outside to cool off for a couple of minutes. Next thing I know, he opens the door

"Are you all right??!!"

"Yes, I'll be back inside in another 2 or 3 minutes, once this hot flash passes."

This gets repeated at least 3 more times in the time span of less than 2 minutes. Next thing I know, he has joined me outside with his down jacket on and says "I thought I would keep you company."

Kind of like the young mom who locks herself in the bathroom for 5 minutes, just to have her toddlers banging on the door for her :-)

Well, another challenging week has passed. I'm learning! And I like that. One of the more interesting observations that I had with the dental experience is that while I was embarrassed for the cruel things he said, the other (stronger) emotion I experienced was compassion for Jim in his very real struggle to get through what was a very difficult experience for him. Another step forward in my transition as a caregiver. For that I am grateful.

Once again, thank you dear readers for stopping by. You are all such great listeners, and I am grateful for each one of you.

Saturday, November 12, 2016

No Days Off for Dementia

Every day. Yes, it is every day. Dementia does not offer any days off. Not for Jim, and not for me. But, I feel like I am emotionally starting the transition that will help me to find peace and contentment with this altered life of ours.

One of my fellow dementia bloggers and I have been corresponding a bit my email. She has been "in the game" for a longer period of time than I have been. Her gracious and helpful emails have just been a breath of fresh air for me.  She observed  that once she accepted that caregiving is her life, things started to flow a little easier. This, as opposed to trying to maintain what was a "normal" life, and working in the caregiving around life as she knew it.

So there you have it. Sounds simple enough, but I know that this transition is psychological and emotional. It is a journey that every caregiver must go through. I've been doing a lot of reading lately related to dementia caregiving. As I read about others' experiences it helps me. It helps me feel less alone, it gives me hope that I can do this, and it gives me some guidance for this journey.

Jim has some compulsions that are difficult for both of us. It causes him anxiety, and in turn causes me anxiety as I try so hard to make things right. He is very compulsive about clothing. He always was a very snappy dresser. With the progression of his dementia, this has turned into an obsession over the minutiae of his clothing articles. Almost every day, we are headed to one store or another in search of t-shirts, blue jeans, socks, long sleeve shirts, the list goes on. NONE are acceptable. He will focus on imperceptible  imperfections, as he sees them, and then rules out any purchases. He gets so frustrated.

I feel so sorry for him. I can't imagine how hard this must be for him. I'm getting better at just saying  "let's go look in another store". At least it gives him a purpose, and something to do. And, it works much better than trying to talk him into buying something that he sees as imperfect. That just doesn't work, and makes him even more frustrated. When he sees the gerontologist I will make sure she is aware of this issue. A little medication to ease his anxiety would likely help a lot.

I recently discovered some new local resources through our county's Office of Aging. They operate separately from the Alzheimers Association. They offer courses, classes, consultations, and resources for the caregiver. In addition, I discovered a support group that is even closer to my home, with meetings every other Thursday. I'm looking forward to attending this support group. It is getting harder for me to leave Jim alone, even with all my reassuring notes I leave him when I have to leave. So I'm grateful to have a group so close to my home. Hopefully it is a good fit for me.

I drove him to his haircut appointment yesterday. It was interesting to me that as we travelled along the highway, he was uncertain which exit he should take. This is after many, many years of driving here to get his haircut. It just reinforces the decision I made that I need to be doing all the driving.

Holidays will look different this year. Usually family (30+) gathers at our house. This year, Jim and I, my disabled brother, and my brother whom I am very close to, and his family will take a Wegmans prepared T'giving dinner to my mom's. There will be 8 of us. Disposable dinnerware makes clean up very easy. I am so relieved to not have to think about a huge party at our house!

Today we went to Home Depot and purchased a very cute artificial Christmas tree that is is only 4 1/2 feet tall. I can carry it by myself up and down from the basement. The last couple of years we have struggled to get our 7 1/2 foot tree up and down the stairs. Last year was very shaky. Jim has definitely lost some of his dexterity and balance.

Downsizing holidays, a smaller Christmas tree, these are all signs of my transition to accepting that caregiving is my life. I'll continue to hope, plan and strive for the grace and understanding that comes with thoughtful caregiving.

Another post has been written, and as always, I find it therapeutic to be able to share my thoughts with my dear readers. So thanks for stopping by, for listening and for caring. And until next time....


Saturday, November 5, 2016

"I've Never Done Such a Thing Before!"

Boy, sometimes this is really hard.

Most of it is pretty manageable. The repetitive questions, the loss of words, the forgetfulness, the loss of  skills and ability to do things, having to go to places I dislike (the mall! for fear he would drive if I didn't go with him), the confusion with any slight change in plans; all of these can be a little irritating at times or even frustrating for me. But it really is no big deal.

It is easy to hide my inner annoyance and still be able to help/direct/answer for the 50th time. And, do it in a way that I am smiling and portraying a happiness that I can help him. Which I am!

But there is sadness, because it represents new losses every week, sometimes every day.  And it won't get better, only worse. It helps me immensely when I remain cognizant of the fact that Jim is the one who is losing his abilities to function, not me. He drew the short straw, and I lucked out by still having all of my cognitive abilities.

The times that are the hardest for me are when he becomes angry at me. I am getting better at predicting and avoiding situations that cause his anger, but not always.

One of the things that can change with the progression of dementia is taste. This excellent post by Elaine Eshbaugh, PhD, tipped me off to why Jim has experienced these changes. I used to love to cook. I would enjoy creating a nice meal to share with family/friends. But quite some time ago this love of cooking waned. As I look back, it started with Jim finding fault with meals I would prepare. Things he used to enjoy, he suddenly expressed dissatisfaction with the food I had prepared. Talk about putting a damper on wanting to cook!

As I look back, this was probably one of the earliest signs of change in Jim. We are now down to about less than 10 entrees that he finds acceptable for dinner. It's pretty boring at our house at dinner time! Lunch is even harder. He used to love certain items, but now can't stand them. The latest thing that kept him happy at lunch time was prepared chicken salad from the deli. Nice and easy!

That is, until yesterday. Now he hates the chicken salad, claiming it tastes different. He was obviously frustrated and angry, and I was the object of his emotional upset.

Jim: "I'm sick of not having any food in the house that I can eat!"

Me: "Oh, that must be frustrating for you..." (he interrupted me)

Jim: "Don't give me that! Do something about it!"

Me: "Let's go to the store to see if we can find something that looks good to you."

He was angry, but he agreed. We got in the store and he is stomping around, saying harsh, sarcastic rude things, and very negative at any of my suggestions. At this point the tears started to flow. I just couldn't help myself. I was so hurt, crushed, and frustrated. And feeling very helpless. How do I fix this? I just can't.

We managed to make it out of the store and went home. I don't cry often (although more so lately), and it really made Jim feel bad. So at some level he knew that he was being a jerk. He apologized, and of course I accepted.

Jim: "I've never done anything like this before! I never yell at you, I just wouldn't do that! Please forgive me. I'll never do it again, I'm so sorry."

He really has no memory of other times that he has been mean to me and brought me to tears. Damn this dementia.

The other stuff is easy. This personality and behavior change is not. So, what am I going to do? Well, Jim's health care is in the process of being transferred to a gerontologist. Unfortunately this will not take place until we return in April from FL. She has a busy practice and he is on the waiting list. It will happen, just not as soon as I would like. I've asked to be called in case there is a cancellation that would get us in sooner. My hope and expectation is that she will prescribe something that will help Jim deal with his anxiety.

There are a few different support groups in the area. The one that I think I can go to is the third Tuesday of the month at 5:30 (uh-oh, dinner time!). So I am committing to go to this at least once, to see if it is a good fit for me. If not, there are others. It is getting harder and harder to leave the house by myself. Jim ALWAYS wants to go with me. And if I do leave him home alone, he easily develops anxiety until I get home. But I know that if I can't take care of myself, I won't be in any shape to help Jim.

On a totally different note, I'll be so glad when the election is over! And not just because I am tired of the negativity, but because I will no longer be asked "Are we supposed to vote today?" I'm smiling as I type this.

So once again I must thank my dear readers for listening. How did we find each other? I'm not sure, but it means a lot to me to know that these kind, caring readers are listening. Until next time...


Saturday, October 29, 2016

What A Difference A Year Makes

It's been an emotional rollercoaster over the last couple of weeks, as I think about and plan for our future. Recently I had a meeting with our finance guy and an attorney who specializes in elder law. It has forced me to think about the inevitable future of providing care for Jim. I like to think that I can do this at home. At times I feel very brave and confident in my abilities to do so. Other times, not so much.

I spent much of Thursday with my elderly mom, getting groceries, banking, etc. She wanted to stop at a local nursing home where one of her friends is living. Well, not really living, actually she is dying. I almost did not recognize her, she was so emaciated. My mom commented that "this is a nice nursing home because it does not smell". Well, her sense of smell is way off. Once we got off the elevator to head down the residential hallway, the smell was over powering to me. So depressing. The vacant, sad look in people's eyes was heart breaking.

No one can judge the hard decisions made by families when the time comes to consider the best options for the individual. But this visit made me all the more determined to do whatever I can to keep Jim at home. Needing help with Jim's care is not in the near future. But it doesn't hurt to think and plan for the best options.

In my last post I talked about the Leaf Study . I was accepted into the study, and it has already begun. I was randomly assigned to group 2, which means I start the daily "emotional surveys" now, and the video conferencing will not start for another 8 weeks. The daily surveys are a quick survey (less than 5 minutes) done at the end of the day, tapping into what emotions you were experiencing that particular day. I've done this 3 days now.

The most striking thing to me so far is that the two emotions that elicited the most powerful response in me were hopelessness and sadness. It's not that my life is without hope, but when I think of our life, it is pretty sad and there is not much hope. It's just the reality of this terrible disease. I'm looking forward to the "intervention" part of the study that will focus on raising your happiness quotient, improve coping strategies and decrease stress.

I discovered this great article called Ways to Control Caregiver Stress and Sadness that I found helpful. I'm all about self-help, and doing whatever you can to take control of your life, including your emotional life. By the way, the Leaf Study is still taking participants, if anyone is interested. Just click on  this link and it will guide you through the steps for enrollment. The research project coordinator that I spoke to on Wednesday said that one recent enrollee mentioned my blog as the source for how they heard about the study :-)

Less than 5 miles from our home a Peregrine Memory Care facility is being developed. It is assisted living (not nursing home) and is intended for folks with dementia. Jim saw an article in our local paper about it and pointed it out to me. He said that this would be perfect for my mom. This gives you a sense of how off his perceptions are. My mom has no cognitive impairment whatsoever. There is a medical term to describe this lack of awareness of cognitive impairment: anosognosia As I have said before, I think it would be devastating to Jim if he actually was aware of him impairment, so I am grateful for this lack of insight.

The other day I was reminded of events from just a year ago. It got me to thinking and comparing how much things have changed for Jim (and for me!).

A year ago:

* Jim was able to drive safely, as long as it was local and familiar. Now, there are really only two very close locations where he is OK to drive.

* Language: A year ago, Jim was just starting to have a little problem with word finding. I remember being surprised by this, but the occurrence was quite infrequent. Now it is many times a day, every day.

* Money/Math/Spatial Relationships: A year ago he could still write a check or make change. Now, he is unable to do the simplest of math calculations or any financial business. Problems understanding spatial relationships is a relatively new development this year as well.

* Memory: It was 9 months ago (I remember because we were in FL) when Jim first had problems remembering his address, phone number, birthday, SS #. It was shocking to me, and gave me a glimpse of where things were headed. Memory loss has progressed to most events in the short term. If something has a large emotional impact on him, he is more likely to remember.

* Personality: Here's some good news! In some ways, things are better simply because I have gotten better at predicting and responding to things that upset him. I'm also doing better at preventing upsets before they happen. Yay!

This last paragraph is actually very encouraging to me. Especially since the personality and behavior changes are the hardest to deal with. The rest is easy stuff. I guess I should give myself credit for getting better at this. Maybe tonight when I do my daily "emotional survey", I will have more hope :-)

Well, once again I am lifted by being able to share with my wonderful, caring readers what is on my heart and mind. Thanks for stopping by, and for being such good listeners!





Sunday, October 23, 2016

Almost Never Alone

Jim went to get his hair cut the other day. It is one of the few places that he has been able to drive to by himself. When he came home, he told me that he "went the wrong way on 690".  It turns out that he was NOT driving against traffic (which is what I thought he meant at first), but instead, he went east instead of west. He somehow managed to get to the hairdresser in spite of this misdirection. He was unhappy with the haircut this time, saying that she did not get the sideburns even. He was correct about this, but it was off by only a tiny bit.

This is not the first time he has complained about the cut. He has been going to the same person for many years. According to Jim, she is always very animated and more interested in telling him about the latest crisis in her life, sometimes at the expense of a precision haircut. I decided to use this as an excuse to go with him next time.

Me: "Why don't I start going with you. That way I can keep an eye on her and ask her to correct any problems before we leave the salon."

Jim: "That's a great idea. I hate to say anything to her, but if you don't mind, that would be great."

I have noticed that when I am driving, he will frequently ask me "how do you know how to get there?".  His car is seldom driven. There are now exactly two places where I feel it is safe for him to drive; his friend Mike's house, and the local restaurant where the guys meet for lunch every Wednesday.

When we get ready to go someplace, I make sure I am the first out the door and quickly hop into the driver's seat of my car. This seems to be working pretty well. The other day he was admiring an Audi SUV.

Me: "We could probably go down to just one vehicle now. If we did that, we could certainly afford an Audi."

He was suddenly very quiet and never responded to what I said. I won't push it, not yet. The other day he wanted to go to the mall to look for some new jeans.

Jim: "I think you better go with me. I'm not sure I'd be able to find my way around in the mall. And I think I'd have trouble finding where I parked my car."

I am so grateful for this insecurity that he has about driving alone. It seems like we will be able to transition to him not driving at all without too much anguish. The down side is that it now becomes  difficult for me to have any alone time. I'll enjoy my Wednesday lunch time, as this is when he meets the guys for lunch. Otherwise, I'm on call 24/7 as the entertainment committee. "What are we going to do today?" or "I'm bored to death." "Let's go someplace!" I can still leave the house for short periods of time by myself, but it leaves him home alone, "bored to death". Another new reality, and I will adjust.

Leaf update. The battery operated leaf blower that I purchased works great. When he first saw it, he loved it. He then tried it out on our driveway. 15 minutes later he came in, very unhappy saying it was a "piece of junk". It has a turbo button. When turbo button is used, it goes through the battery pretty quickly. Operating at normal speed, it will last an hour. There has been a learning curve, as he is realizing that it works well if you avoid the turbo. So now he loves it again!

Even though I am retired, I've managed to keep up some professional links that are still of interest to me. One such website led me to this: http://leafstudy.ucsf.edu It is an opportunity to participate in a nursing research study for caregivers of loved ones with dementia. It is intended to increase levels of positive emotions, with the goal of decreasing stress and improving coping skills for caregivers. I have a phone interview this Tuesday to see if I qualify (I think I do).

They use video technology, so that you can participate from any part of the country, as long as you have access to wifi. I think that this might work well for me. Over the last couple of weeks I've had a couple of appointments (finance guy, Alzheimer's Association) where I've had to fib to Jim about where I was going. I hate that. I'm hoping that this format of video conferencing will be easier for me. And, I like the idea of supporting nursing research.

Well, once again I have managed to share what is on my mind and in my heart. Thanks for stopping by, dear readers.




Saturday, October 15, 2016

Hot Means Cold, Yes Means No

Ah, the challenges of communication! Lately I find that I need cues other than the spoken word to really understand Jim. The more anxious or frustrated he is, the harder it is for him to accurately articulate what he is trying to say.

As I have written before, Jim struggles with climate comfort. For the most part, I find that if I keep the temperature at 74 degrees, he seems content most of the time. (As a side note, my body thermostat runs much hotter. I'd feel much better at 68 or 70, but 74 brings the peace, so that is what it will be.)

The other evening, for whatever reason, the 74 degrees was not working for him. The following conversation ensued:

Jim: "It's way too cold in here!!! What is the temperature???"

Me: "It's set at 74, but if you are too cold, I will turn it up."

Jim: " No! This says it is 54 degrees!" (He was looking at our inside weather monitor that measures both inside and outside temperature.)

Me: "Let's look at the indoor temperature, which shows it is 74. I can turn up the thermostat if you are  too cold."

Jim: (Angrily) "It's too cold in here!"

As he says this, he is taking off his zip up hoodie he was wearing over his t-shirt. I suddenly realize that he is too hot, not too cold.

Me: "Ok, I'll fix the thermostat so that you'll feel more comfortable."

Notice how I carefully chose my words with that last statement. And, I had to pay attention to his body language, not his words to figure out what he was trying to tell me. More and more this is happening when he is anxious or upset, where yes means no, and no means yes.

The problems with word finding continue and seem to be increasing. Last night as he came to bed he woke me up to ask:

"When is ........" (gesturing with his hands held palms up).

I'm half asleep and have not a clue as to what he is talking about.

"You know..........on Monday......."

I'll spare you the painful details of the belabored conversation we had, but essentially he thought the presidential election was Monday and he was afraid we would forget to vote. He has been worried about this for quite a while, and we've had several conversations regarding this. I put it in his appointment book, but I don't think that helps if he can't remember to look for it there.

We met with our financial advisor this past Monday. It really was a brief, general meeting for Jim's benefit. Later in the week I met alone with our financial guy. We reviewed our portfolio, and we discussed the reality of Jim's shortened lifespan given his dementia diagnosis, as well as the expected expenses of home care for Jim. This definitely impacts on our/my financial future.

Long ago, Jim and I decided against long term care insurance. Instead, we chose to self insure, taking the amount that would be payed for LTC premium and pumping that money into our investment portfolio. Our finance guy has this fancy software that evaluates and projects your rate of return on investments and projects the income flow over your life expectancy. It looks like we'll be OK, even with Jim's health changes and projecting the costs of his care. I know that life is full of surprises (!), and I'm prepared to adjust as needed if financially we need to do so.

I met with the local Alzheimer's Association yesterday. They are a wonderful organization! Two very caring young women spent about an hour with me. They listened, and they encouraged me to guide the focus of our meeting. They provided me with lists of resources (gerontologists, counselors, support groups), and also had some good advice regarding coping skills for the caregiver. I was so impressed with their professionalism, their knowledge and their caring, empathic listening skills.

Update on the "leaf eradication" project (as Patti describes it) :-)  I have ordered a battery operated leaf blower. Friends of our's have one, so I know that it is light weight and easy to use.  It should arrive on Monday or Tuesday. I haven't told Jim yet. This is the kind of thing where it works best if I don't tell him too much ahead of time, as he will worry and be anxious about it. Once it comes, if he does not like it, I'll tell him it is for ME and that I want to be able to blow the leaves. Once he sees me use it, I'm guessing he'll love it and want to take over the leaf blowing again :-)

It is still very early in the season; I would guess that maybe 10% of the leaves have dropped. Jim is out there several times a day with his push broom and rake, trying to get every last leaf. It's good exercise and gives him a focus, but it is causing him way too much anxiety. He frets during the evening about what the driveway will look like the next morning. And, when the leaves really start falling, he would really be in trouble trying to keep it all spotless with the broom and the rake. We shall see.

So goes another week in the world of Jim and Carole. As always dear readers, thanks for stopping by!



Wednesday, October 5, 2016

Looking to the Future



The dementia companion cards arrived! I like how they look. I'll always make sure I have a few in my purse so that I can feel more confident when we go out and about.

I've known for some time that I needed to find some additional support. Eventually, I will join a support group and I think I will enjoy the process of being a help and support to others, and in addition feel supported by others.

I struggle most with the personality and behavior changes that I see. The other stuff is easy. I'm a helper by nature, so my instincts are good most of the time. I run into difficulty when I feel that I am being wrongly accused, and I know there is nothing I can do about it. It hurts me so deeply. When Jim becomes angry at me over something that he is misunderstanding, it tears me apart. I know he can't help it. His memory is bad and his perceptions are off. It is my personal failing that I can not overcome the hurt that I feel when these kind of things happen.

I know I need some perspective, and I think a counselor could provide me with some guidance. The problem is, how the heck do I find someone that has some experience in working with caregivers? My very close friend Amy (who happens to be an amazing Social Worker!) suggested calling the local Alzheimer's Association and asking them for a recommendation for a counselor with experience in this area. So I did.

I actually have an appointment next week with a very nice person who does an intake interview. She was so nice on the phone! She will let me know about the resources that the AZ Assoc. offers caregivers (and the loved one). She will have ready some names of counselors in the area who have experience working with caregivers. I feel better already.

We meet yearly with our financial advisor. Last year when we went I remember that Jim pretty much just sat there and didn't say too much, other than some small talk. When I think back to that time, it reminds me of how much ground Jim has lost since then. Privately, I called our financial guy a few days ago to let him know what was going on with Jim's dementia. It sounds morbid to talk about it, but I know that I have to plan for the future.

On average, at the point of diagnosis, the life span of someone with dementia is about 1/2 of what it would be if they did not have dementia. (For example, according to the Social Security calculator, at age 70, the average male can expect to live another 15 years. If diagnosed with dementia, the life span on average would be 7.5 years.) I realize this is simply an average, or an estimate. A lot of other factors can weigh in to alter this as well; no one really knows. But it's a reminder that dementia will likely shorten your life span. This has implications for timing for social security benefits, investment strategies, planning for care at home etc. Lots to think about.

Next week Jim and I will meet with our advisor for a brief, general meeting. A few days later I will meet with our advisor by myself, to discuss long term financial planning for Jim's care etc. The discomfort I feel in "sneaking around" like this is very real. But at the same time, I feel that I don't have too many options at this point.

I'm in the process of changing our primary care doctors to a gerontologist who practices in our area. She comes highly recommended, and I look at it as a good opportunity to provide Jim with quality care as we travel through the next stages of life. Also, by both of us having the same doctor (we don't, now), it will be easy for me to communicate any concerns. Years ago, she diagnosed my dad with Lewy Body Dementia . No one else knew what was wrong with him. She, being the expert in gerontology immediately knew what the diagnosis was. It was a relief to finally know what was wrong, and she provided wonderful support and care for my dad and our family.

Looking to the future. So much to think about. Once again, thanks for stopping by. I can always count on my caring, faithful readers. My friend Amy (who reads this blog) mentioned how wonderful and supportive the commenters are. I so agree:-)


Monday, September 26, 2016

Leaf Your Troubles Behind




A little play on words...

This is a picture of Jim, sweeping the driveway and the yard(!) with a large sweep broom. I think I have mentioned before how meticulous he is with our yard. If you look closely, you may see a few leaves on the grass. He will get every one of them! With each passing year it becomes more of an intense focus for him, to make sure he is out there chasing down every leaf that falls. We've talked many times about waiting until they build up a bit, or even mulching them with his mower, but he will have none of it. While there is no harm in what he is doing, it does represent the level of anxiety he experiences if everything is not just right.

Jim had to replace our leaf blower this year. It is a little different from the old one. Wouldn't you know it, he is not able to operate it. The guy who helps us with our landscaping was kind enough to give Jim a lesson the other day on how to operate it. You can be sure that I was all ears, taking note, knowing that Jim would never retain what he was being shown. When the leaves actually start really falling and building up, I'll get out the leaf blower and go over it with Jim.  It's a pretty heavy duty blower; I'm not sure I could pull the cord to start it. But I certainly can talk Jim through the steps.

The other day we were leaving for the grocery store. As I pulled out of the garage and started down the driveway, he yelled "wait!". I thought something was terribly wrong; his voice was filled with anger and anxiety. I stopped the car, he opened the door, picked up the shells from a nut that had fallen onto the driveway and tossed it into the wooded area. I cannot imagine what it is like inside his brain, to live with this kind of worry and anxiety.

While Jim was outside sweeping the yard and driveway this morning, his closest friend, Mike, happened to call. I picked up the phone and explained that Jim was outside, but that I'd have him return the call.  Mike asked me about the changes he had been seeing in Jim. What a relief! I was certain that Mike must have noticed, but it didn't feel right for me to bring it up to him. We must have talked for 20 minutes. He said he noticed the changes quite a while ago. He said all the right things. He encouraged me to call him for anything, even if it is just to talk. What an amazing friend. I feel so grateful.

I've ordered the "oops" cards that I spoke about here. I'm not sure how this will work, but I'll have them on hand for those awkward moments. (Thanks Amy!)

My idea of leaving a note with my return time and cell phone number is working well. It was an easy fix, and leaves me feeling more comfortable with going to the Y, helping my mother etc.

One of the blogs I enjoy reading is Kathy's Retirement Blog. You can check it out here. She recently wrote a two part post about the role of caregiving. It was a good, thoughtful discussion with helpful comments from other readers. It was a good reminder that as caregivers we need to find time to take care of ourselves to minimize the stress and strain that come from this challenging role. My time at the Y and the time I spend with my friends are my two main outlets.

Well, another post is written. My soul feels lifted. It means everything to me to know that I can share my most private thoughts on this page and know that these words will be "heard" by caring supportive friends. So thanks for stopping by. Until next time....leaf your troubles behind :-)


Monday, September 19, 2016

Dinner and a Movie

Locally we have a Movie Tavern. This was a new concept for me. The theater has large, plush reclining seats. They are so comfy, you could take a nap! The Movie Tavern provides a nice menu selection of food and beverages. The best way to experience it is to arrive a little early, order from the menu, watch the previews and wait for the movie to start. They bring your food and beverage to you, and if you should need anything else during the movie, you simply press a small button for service. There is a drink holder in the reclining seat and a tray table that swings over your lap to hold your food. I have to say it is quite the experience.

You pay a (large) premium on any food you order. Food quality was pretty good, I'd give it a solid B+. You can order anything from burgers to salmon. We watched the movie Sully. It was great! Very inspiring. Tom Hanks of course, was amazing. At the end of the movie everyone in the audience clapped. It was that kind of movie.

Seats are reserved ahead of time online. I picked two seats with what I thought would be a good vantage point. I noted that there was an empty seat on either side of us. Given the uncertainty of how our lives play out, I thought it would be good to have that extra space as a buffer. I showed Jim the online seating and pointed out our seats, and also mentioned the empty seats on either side of us. He thought that was great.

I should have seen this coming, given that this was such a popular movie. At the last minute, just before the movie started, two women came to our row and asked if we could move down a seat so that they could sit together. Oh no. Jim immediately say "No! we're not moving! These are our seats!" At the exact moment he is saying that I am saying "we don't mind moving down a seat". Jim glares at me. The women say "that's alright, we'll just sit separately, no big deal". As the woman sat next to Jim, he says "you can't sit there! You are not authorized! These seats are supposed to be vacant!"

The woman looked at him in disbelief. She showed him her ticket and at the same time I'm trying to quietly explain to Jim that they purchased these seats. I was so embarrassed. On the way out after the movie, I heard her recounting the experience to her friend. "Can you believe he talked to me that way?"

In the dementia world there is something called the "Oops Card". When something happens in public that is awkward or embarrassing, you surreptitiously hand them an oops card. It explains that the person has dementia etc. I may be close to the point where I need to do something like that.

I went to my Y class this morning. I knew I would be coming home later than usual as I wanted to stop at the grocery store. So I wrote on a piece of paper "Carole will be home at 11:30". While I was gone, by mother called and Jim spoke to her for a few minutes (he actually remembered to tell me this). When I got home, he said he tried to call me to tell me my mom had called, but that he couldn't reach me. My cell phone did not ring while I was gone. Here is how the conversation went:

Me: "What number did you dial when you tried to call me?"

Jim: "xxx-xxxx" (This is our landline)

Me: "No, I don't mean our home phone; what number did you use when you called my cell phone?"

Jim: "xxx-xxxx" (our landline)

Me: "Well, if you need to reach me when I am gone, you need to dial my cell phone number, which is zzz-zzzz"

Jim: "No! I'm not going to do that! I need to be able to dial xxx-xxxx to be able to reach you here!"

By now I am telling myself to just agree, let it go, and move on.

Me:  "OK"

Jim: "A strange old lady answered the phone when I dialed xxx-xxxx" (our land line) 

Me: "Maybe the wires got crossed. Who knows."

Did he confuse talking to my mother with thinking that he had called me, albeit on our landline?

In the future, when I have to leave I will not only write down what time I will return, but also my cell phone number so that he will have that readily available if he needs to call me.

This conversation was one of his most confusing. I'm still not sure exactly what happened while I was gone. It does seem like the confusion is worsening, or at least is more frequent. When I think about the dinner and movie we went to, I should not have set up expectations for a seat on either side of us to be empty. I need to remember that any unexpected change is almost more than he can process and handle.

Oh, it feels so good to be able to write all this down. It really is therapy for me. Thank you dear friends, once again, for listening and caring.

Wednesday, September 14, 2016

Technology Challenges and Changes

I knew that I would be away from home today for a couple of hours, so I encouraged Jim to meet his buddies for the usual Wednesday lunch at a local restaurant. At first he said no, he wasn't interested. I let it go, knowing that if I pushed it he would likely become more resistant. My tactic worked! As I was getting ready to leave the house he announced that he was headed out to lunch with the guys. Hurray!

When I returned home he was pretty unhappy. The restaurant was changed from the usual meeting place. It's possible this was decided the week before and Jim didn't remember. He sat and waited for quite a while and finally decided to just go home when he realized no one was coming.

According to Jim, phone calls were made. Details are sketchy, and in stressful situations I don't press for details. It sounds like his friend tried to call him on his cell phone. In a previous post I wrote about the difficulty we had trying to find a phone that was similar to the one he had before. (His prior cell phone account and phone number were discontinued by the carrier for inactivity.) I believe he had problems today either trying to make a call or taking a call with his cell phone. He was just so upset, it was hard to watch.

So, back to the drawing board. I'll continue to look for another basic phone that will work for him. What makes it challenging is that he insists on a flip phone, he wants it to be no larger than certain dimensions, and no camera.

When his stress level is that high, it is hard for me to be internally calm. I really have to fight myself not to take in the anxiety he is experiencing. Nearly impossible. When he is that upset/anxious, he gets quite loud, expresses his anger, and generally is quite unhappy. I try very hard just to listen, stay calm, and try to put myself in his shoes. I know he is not angry at me, he is angry and frustrated at the situation. But boy, it sure is hard to not internalize all of the negativity, even if it is not directed at me.

This evening he is feeling better and his mood is back to baseline. A little while ago he said "thanks for helping me out and doing all that you do for me." How sweet!

We have an electrician coming on Friday to replace a faulty light switch. I discovered that Jim had taken the plate off with a screwdriver and was looking intently at the wiring. He reminded me that the red wires are "hot". Oh my goodness. It actually was pretty easy to get him to agree to having an electrician come to do this minor repair. For some, this may seem like an easy household repair. But I know NOTHING about electrical, and I certainly didn't want to rely on Jim's memory to do this repair.

We have a list of contractors and workers that we have kept updated over the years. These men and women are worth their weight in gold. It's reassuring to know that good help is available, if needed.

Well, thanks for stopping by and listening to me. I so appreciate each and every one of you!


Tuesday, September 6, 2016

Word Finding; It's a Guessing Game

We had a great birthday party for my mom this past weekend. Lots of good food, laughter and conversation made for a nice celebration. Jim did a great job helping me with what ever I needed. I didn't notice anything amiss during the party. If Jim was confused or said something that was off, I didn't see it.

After everyone left, we cleaned things up together. He was exhausted, I could tell. Evenings and times when he is tired are the hardest for him. About 2 weeks ago he had a couple of his medications changed. For some reason, after everyone left the party he became focused on the meds, saying things that didn't even make sense.

Jim: "What are the three meds?"

Me: "You mean what are the two new medications?"

Jim: "Why do you call them three different words? You're confusing me."

Me: "I'm not calling them different names, I'm using the same names. A couple of weeks ago you started two new medications; they are ____ and ____."

Jim: "There you go again.  Why do you call them three different words?"

At this point, I have no idea what to say. But I attempt to recount the history behind the two new medications and tell him that the names I'm using for the meds are the same names that I have been using for 2 weeks. I even get the bottles to show him.

None of this goes well. He is so confused. And I'm realizing that my attempts to provide clear, logical explanations are not being processed at all. So, I hold his hand, hug him, give him a kiss, and say "we're both tired, and this is hard for both of us to understand. Let's talk about it tomorrow morning when we're both more rested." He accepted that! It was that easy!

I need to remember that my attempts at rational conversation are not always processed well by him. Sometimes it is better to just keep it very simple, or as above, delay the conversation to another time. By the way, the next morning I don't think he remembered any of this conversation. He didn't bring it up, and I certainly didn't!

I usually go to bed about an hour before Jim does. He is more of a night owl, and I am the early bird. The other night when he came in to bed he woke me up to tell me that he couldn't find his glasses. I told him I'd help him find them in the morning. He accepted this and came to bed. The next morning I  said "last night you said you lost your glasses. Do you want me to help you look for them?"

Jim: "I said that?"

Me: "Yes, and I can help you look for them."

Jim: "Was I asleep when I said that?" "Were you dreaming?"

Me: "Look! Here are your glasses!"

The problem with word finding continues, and actually occurs many times a day now. This is definitely an increase from 6 months ago. It is mainly nouns, which sometimes makes it hard to figure out what he is talking about. I usually ask a bunch of questions so I can key in on what he is talking about. Fortunately he is frequently talking about something we have discussed within the last few hours, so I can usually figure it out.

Jim: "Where do you find the thing on the ..........(long pause)"

Me: "Are you talking about your car?"

Jim: "No.....you know..... the thing........" (puts hands to his head in frustration)

Me: "Are you talking about your Kindle?"

Jim: "Yes! Where is the thing on my Kindle?"

From there I was able to figure out he was looking for the volume control button. How frustrating it must be for him not to be able to articulate what he wants to say. I've gotten pretty good at guessing what he needs to say.

Sometimes I visualize his brain as full of cobwebs (plaques and tangles are the medical terms) covering all this valuable matter. If only we could brush away those cobwebs!

I read this great article that you can read here that essentially discusses the issue of "would you rather be right, or would you rather have peace". The answer is pretty easy for me. The author is Marie Marley who has written about Alzheimers based on her experiences with her husband. I might read one of her books. I say might, because I'm not sure if it would be sad, or if it would give me hope, or maybe something in-between.

I've got a great week ahead. I'm having lunch with a very dear friend of mine tomorrow. Thursday is "mom day" (groceries, errands etc), Friday is lunch with a very good friend of mine who is still working. Add in my usual YMCA classes, and I am a happy camper. Jim does best if I'm not away for a long period of time. All of these activities are within a time frame where he should be fine by himself. It's great to have these things to look forward to!

Well, thanks again dear readers for checking in with me and reading my words. As I type, I hear myself talking and smiling, knowing that very kind and thoughtful folks are listening. Until next time...

Wednesday, August 31, 2016

I couldn't find you!

Jim loves to keep our yard in perfect shape. He mows with our garden tractor on a regular basis, cutting it high so that the grass stays nice and green. I've mentioned in past posts that for some of the outdoor work I have needed to get involved. It has given me a new appreciation for all that he has done over the years to keep our property looking so nice.

We had some new plantings placed recently (long story for perhaps another post; I definitely did not want additional flowers/bushes to have to take care of). The new plantings need frequent watering. Given the drought like conditions, we've been watering almost daily for the last couple of weeks. We're going to back off to every other day. I really need to be out there helping, as he is not able to keep track of what has been watered. Yesterday when I said "don't forget to water the third hydrangea plant", he insisted he already had and then said incredulously "are you saying you don't believe me?" Fortunately I was able to suggest we both check the soil around the plant, and this convinced him it needed to be watered.

Yesterday I headed outside to wash windows along the back side of our house. Jim was headed into the shower, but helped me to get set up with step stool, squeegee etc.  He offered to help, but honestly, sometimes it is just easier for me to do it myself. The compulsion to get everything perfect can drive me crazy. It ends up being quicker and easier to just do it myself.

I was on the next to the last window and I heard his voice calling out to me "Carole! Carole!". He was just rounding the corner from the front of the house. He said "I couldn't find you!!!" I reminded him that he had help to set me up to wash the outside windows, and that I had been outside ever since then. (I felt the need to tell him this so he wouldn't think that I had gone outside without telling him first.)

Jim: "But I couldn't find you! I didn't know where you were! I looked all over. I even looked in your purse!" (???)

Me: "I'm so sorry you couldn't find me. But the good news is that the windows are done and they look great."

Jim: "I just didn't know what to do."

He was OK and calmed down pretty quickly.  Just another reminder to me that the short term memory is not great. When I remind him of things he has forgotten, he'll say something like "oh, yeah", but I'm never certain if he actually remembers, or if he is just going along with what I say.

He has an old style flip phone that he has used for several years. He keeps it in his car all the time. He rarely uses it. We have a land line that I'd love to get rid of, but the land line is what he is accustomed to. We received notice that his old flip phone would no longer work after 12/31. It was a 2G, so we needed to get him a new phone. To make matters worse, because his phone had not been used in 3 months, they deactivated his account and gave his number away!

 We went to Walmart and a very helpful sales person assisted us in finding another flip phone that will work just fine. It is pretty similar to his old one,  which was VERY important in terms of transitioning to this new phone. One problem: it has a button on the side that activates the camera (which he would never use). The positioning of this button makes it easy to accidentally turn on the camera. Once the camera is on, you have to hit the END button to turn the camera off. He will likely never remember that, and I fear it may be a source of frustration for him. I've googled to see if you can deactivate the camera, but so far no luck. We'll see. We've got 2 weeks to return it if we're not happy with it.

We've got my mom's birthday bash this weekend. I'm playing it smart. Lot's of prepared food. Very little food preparation on my part. Costco's chicken alfredo pasta, mac and cheese, spiral ham, cooked turkey breast from Costco that I just have to slice, tossed salad, Japanese cole slaw (that I will make - delicious!), Wegmans loaded potato salad, Wegmans birthday cake, ice cream, and Costco's wonderful chocolate chip cookies. No one will go hungry :-)

Every day I am thankful that I retired when I did. My posts, of course, highlight my observations of Jim's changes. I don't often mention all the fun, happy and silly times that we still have. There are plenty of those times too! And many more to come, I am sure.

It means a lot to me to be able to write these words, and to have such caring compassionate readers who stop by to listen to my story. Thanks for stopping by!


Saturday, August 20, 2016

Mathematical Calculations


This is a picture I took last week after a heavy overnight thunderstorm. You can see the morning sun peeking through the trees. We've had an unusually  hot and dry summer, so any rain is so appreciated. 

This is the weekend we had planned to travel to Philadelphia for a wedding. It was not to be. Jim is not feeling well. It's complicated, and hard even for me to describe. This is one of those times where his difficulty with word finding becomes especially significant. Based on my observations and on what I can gather from his efforts to describe what he is feeling, I think part of the problem may be some dehydration. The extreme heat we have had, along with his compulsion to keep the yard perfect have likely led to the perfect storm of some heat exhaustion and not enough fluids. 

We've discussed how many glasses of water he should drink a day. But tracking it is the kicker. There now is a pad and pencil with a chart to check off each glass he drinks. However he could drink a glass of water, be looking at the chart, and still not remember (process?) that he needs to make a check mark! So, I'm on high alert, at least for a few more days, to try to keep track of how much he is drinking. The good news is that he has a new awareness of the need to drink more, so I'm hoping after a few days this will become more routine for him and actually counting/recording will no longer be necessary.

If he is not back to baseline by Monday, he is in agreement to go see his doctor. And he has agreed and wants(!) me to go with him. Meanwhile, we'll focus on more fluids and more rest. 

This morning we were discussing the ages of our niece and her husband. Here's how the conversation went.

Jim: "He's quite a bit older than she is."

  (Looking back, at this point I should have just nodded my head and said "uh-huh". I mean, what is the point? Who cares? But I was not running this through my usual high alert caregiver filter.)

Me: "Well, it's actually a 2 year difference; she is 24 and he is 26"

Jim: "No! It's 10 years difference!"

Me: "Well, she is 24 and he is 26.  26 minus 24 is 2, so it is a 2 year difference."

Jim: "No, no, no! That is a 10 year difference!"

Me: Thinking he just needs to visualize this I write on a piece of paper :   26
                                                                                                                     -24
                                                                                                                        2

Jim:" 4 plus 6 is 10! It is a 10 year difference!"

At this point I realize that I have done exactly what I should not have done. Every time I think I am getting good at just going with the flow, my exacting personality manages to rear its ugly head. 

When Jim was doing his graduate work I'll never forget when he came home and told me he had just registered for the most advanced statistics course that the university offered. He excelled academically.  He always had an intellectual curiosity that spanned a lot of different topics. He was a voracious reader. He still buys books for his Kindle, but I notice that he seldom finishes any of the books that he starts. I'm guessing that he is having trouble processing and understanding all of what he is reading. And he is likely having trouble remembering what he has just read. 

It is becoming increasingly clear to me that he has NO idea that is is cognitively impaired. From what I have read, that is a common finding in dementia. Some people know and are very aware, but many do not. I suppose that it is a gift to him, to not be aware of his loss. I can only imagine how devastating it would be for him to discover what is happening to his brain. 

We always have a birthday party at our house in September for my mom. Almost everyone is able to come, which means about 30 -35 family members. When I think of last year's party, it makes me realize how much Jim has changed since last year. We'll see people that we only see once or twice a year, so it will be interesting to see if others notice.

So, with my caregiver filter back in place, the rest of the day is going well. I think we'll head out for some ice cream; that certainly counts as fluids :-) Hope you are enjoying this beautiful summer day. Thanks for stopping by. 


Friday, August 12, 2016

"That Was a Close Call"


Jim and I are headed to Philadelphia next weekend for a wedding. We are very fond of this dear young couple and are looking forward to this very special event. Previously http://oneoflifeslittlesurprises.blogspot.com/2016/07/mental-gymnastics.html I wrote about our experience of buying a new suit for Jim. He planned on wearing a white shirt that he had purchased a couple of years ago. It fit well and was still in style.

Today he discovered a discoloration near the collar. My vision is perfect, but I honestly could not see what he was talking about. But once he is convinced, it is very difficult to get him going in a different direction. And, the supposed discoloration was on the inside of the collar, not at all visible while wearing. It suddenly took on an urgency that is almost impossible for me to describe. He wanted to go immediately to the men's store (where we bought the suit) to get a new shirt. "I have to do it right now because there are only a couple of days left!" It was 3:30 in the afternoon, pouring rain, and I was in the middle of a project. I suggested that we wait until tomorrow morning to go, and reminded him that the wedding was a week away. Didn't work. He was so worked up, so anxious, it was hard to watch. "You don't expect me to sleep on this, do you???"

So, off we go. I managed to get into my car before he could even think about driving. He certainly was in no shape to drive, given his anxiety level. We successfully purchased a very nice new white shirt. On the way home he was visibly more relaxed. The rain was off and on, but suddenly started to pour torrential rains. Fortunately we were close to the highway exit and could meander at slower speeds safely to get home. As we exited the highway he said "Boy, that was a close call!" I thought he was talking about the rain. When I replied something about the heavy rain, he said "No! I mean it was a close call about the shirt! I didn't know what I was going to do!"

His world has gotten smaller. I see that more and more, as he ascribes intense meaning and emotion to what I would consider the minutia of life. This is the only explanation I can think of to explain the anxiety he experiences when something doesn't go quite right in his life.

Fortunately these anxious moments are not often. I'm learning how to help him through these times when they do happen. Basically it means being willing to go with the flow, not challenge, offer reassurance, and essentially be supportive.

We have some wonderful neighbors. We especially enjoy the young family who live next door to us. The other day I ran into Molly (the mom). She asked me if Jim was OK. She said that she and her husband had noticed some changes.....It was so sweet, her expression of caring and concern. I told her that Jim was having some problems with his memory, but I also let her know that he did not acknowledge any memory deficits. She said all the right things. And, said to let them know if there was anything they could do, or if we needed any help. How lucky we are to have such a wonderful family living right next door to us!

Jim and I have always enjoyed following politics together. One of our proud possessions is a photograph of Jim and Hillary. The picture was taken at a political event when she was doing her "listening tour" while running for NY state senator in 1999. Prior to my retirement, we had talked about traveling to the different states during the presidential primaries to be a part of the process and to witness firsthand history in the making. That kind of travel is not feasible with Jim's health changes, but we sure do enjoy following all the political news. Thank goodness for the internet news sources. Jim has had problems retaining some of the details of the political stories. But by checking his news feed frequently throughout the day it helps him recall with better clarity. We still love to talk about politics and commiserate about the latest news. (Seems like there is a big breaking story every day!)

Well, once again, thank you dear readers for listening to me. When I sit down to type, the words just flow. And I feel like I am talking out loud to each and every one of you. For that I am grateful.

Friday, August 5, 2016

There's a Stranger in Our House

Well, he's not really a stranger, but sometimes it feels that way.

It's been a while since I posted. My goal was to write at least weekly. Sometimes I'm not sure what to write, and sometimes I hesitate to write because I don't want everything to sound so negative. Jim and I have plenty of good times together. He is still in the early stages. From what I have read, some spouses do not recognize any cognitive changes until the person is well along in the decline. I certainly noticed very early on several years ago.

We definitely have had some frustrating moments. But looking at the totality, it really is nothing compared to what many caregivers go through. I expect to fine tune my coping skills as the disease progresses. I could be described as a planner. I like to know what to expect, and I appreciate opportunities to prepare for the future. This journey will definitely take me to places I've never been, and I hope I am prepared.

We were all set for an afternoon cruise around one of the local lakes. We live near a resort town that is fun to visit. It sits on a beautiful lake. Last week we talked about booking one of the touring boats around the lake. I suggested the one hour tour in mid-afternoon, as opposed to a dinner or lunch cruise. I figured the shorter time span would be easier for him. He was just as excited as I was, and definitely looking forward to it. Tonight he surprised me by saying that he has "no interest" in doing it. "It sounds boring."

Probably one of my biggest challenges is finding things to do that will keep him happy. It is not unusual for him to wake up and say "what are we doing today?" It's a big change for me. I have my own life of course. When I first retired, he was perfectly capable of finding things to do to entertain himself. Myself, I enjoy time with my friends and lots of physical activity. Jim used to enjoy working out at the gym. I finally cancelled his membership a couple of months ago. It has been a long time since he went to the gym, over a year at least. I certainly tried, including asking him to join me at the gym. He is always "too tired" or "too busy" (doing what???).

We used to go for long hikes together. Now, it is a slow shuffle for 2 miles at the most, and then he is tired. That may sound like a long distance for some people, but we used to go on very long strenuous hikes and enjoyed every minute. There is no physiological reason for this change in his energy level. Reading about dementia it appears that fatigue is common. I have not been able to figure out why. Is the brain on overdrive trying to fill in the missing pieces? Does this then tire out the person? I just don't know the answer to this question.

I miss the old Jim. The new Jim is a different man. Still looks the same, but acts and speaks so differently sometimes.

Yesterday I spent the day with my elderly mom. She needs a lot of help and relies on me for grocery shopping, banking, general errands etc. I am so glad that I am able to help her at this time in her life. I got home late afternoon and Jim was visibly upset (at me) that "there is no food in the refrigerator". What he really meant was that he could not find anything that appealed to him to eat for lunch while I was gone. It also means he did not look far enough in the fridge to find some of his favorite foods.

It's hard for me to not get defensive when he says things like this. We worked through this unsettling episode, but it's like a scar tissue that seems to be building with each hurtful comment. Even though I know it's the disease process, it is hard not to take it personally. I do so much for him, and I sometimes feel that I am not appreciated. But deep down I know that is not the case. He truly loves and appreciates me, it is just that darn disease process has changed him into someone I do not always recognize.

I have a very close friend whom I trust, and have been able to share with her what is going on with Jim. What a relief. Her emotional support has been nothing short of phenomenal. She listens carefully and always has something empathic to say to me. I cherish her friendship. We had lunch together last week and then went shopping. What a wonderful time we had! Lots of laughter, and lots of talking. It's one of those special friendships where we are mutually supportive of each other and truly enjoy each others' company.

It feels good to put into words what is in my heart and mind. Thanks for stopping by.






Saturday, July 23, 2016

Will This Journey Make Me a Better Person? I Hope So.

One of the ways that I deal with uncertainty in life is to read. I research and read everything I can about the topic in question. Many readers will remember the pre-computer days, when researching meant driving to your university or public library, sorting through a card catalogue, and then searching through the stacks for the pertinent books or journal articles. Life is so much easier now!

Looking back over my past posts I realize that my thinking and understanding about this terrible disease is a work in progress. Some of it is altered by the many helpful and insightful comments left by my kind readers:-) And some of the changes are due to my own reading and researching. I thought I would share a couple of my more recent discoveries.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4927869/ This article discusses the scientific evidence   on the benefits and the challenges of a timely diagnosis. Benefits include early interventions, better management of symptoms, avoidance of medications that may aggravate the situation, and cost savings. Barriers include risk of stigma, increased risk of suicide, shortage of diagnostic services, and reluctance of health care providers to make such a diagnosis when there are no disease-modifying options available.

This really got my attention. http://www.kevinmd.com/blog/2016/07/alzheimers-dementia-world-denial.html It discusses the fear of loss of identity in the newly diagnosed. This makes so much sense to me. Jim had a very high-powered job with a lot of responsibility. His brilliant mind and his winning personality made him the perfect person for his job. I can only imagine how devastating it would be to realize that you are losing the essence of who you were for so many years.

Further reading http://www.medscape.com/viewarticle/753761 reveals that suicide is higher in newly diagnosed dementia patients. Firearms were the most common method of suicide. It appears that the loss of identity is a big part of the increased risk for suicide. This really gave me pause.

On a lighter note, it has been a good couple of weeks. One of Jim's friends has been after him to join a group of guys that gets together for lunch once a week. They are all friends he grew up with. Jim has always been hesitant. I would encourage him, but he always gave an excuse of why he shouldn't go. Last week I had plans to go out for lunch and shopping with a friend of mine. I told Jim I wasn't sure what time I would be home, but would probably be gone for a few hours. He said "what am I going to do today?" He then answered his own question and said he would go to lunch with the guys! Hurray! By his report, he had a great time :-)

Had a brief tense episode when he became concerned our air conditioner was not working. It was such a convoluted, confusing conversation, I couldn't possibly repeat it. Patience, a calming voice and lots of reassurance got us over this hump.

He continues to struggle with what are commonly termed "executive functions". We hired a worker for a repair on our home. The bill came to $150. Jim opened his wallet and found two $100 bills. The worker said, "here, I have a $50 bill to give you if you want to give me $200". Jim absolutely could not process this and called for my help. I'm just so grateful that he feels so comfortable to ask for my help. He handed me his wallet and said "here, you can do this".

But I realize that what I write about is really little stuff. It's important for me to remind myself of this. Others are so much further along in the journey. The shock of realizing how he was changing really shook me up at first. I never really had any denial; it was so clear to me what was happening. But at the same time it was a big adjustment for me. The man I married and the man I love so dearly was changing before my very eyes and there was nothing I could do about it.

But as time goes on, I'm adjusting how I think, how I react and how I respond to all of these changes. And, I think in the long run it will make me a better person. At least I hope so. I'm hoping that as this journey continues I'll find the strength to be the person I know I should be.



Saturday, July 9, 2016

The Filter in Our Brain


Our social life is not what it used to be. Part of it is Jim's preference; I'm guessing at some level he senses increasing difficulty in being a part of social conversations. Small talk is always easiest, but anything in depth and it is obviously more of a struggle. He becomes much more quiet and looks to me to keep the conversation going.

Part of the decrease in social activities with others is because of me. We used to routinely go out to dinner with friends. Now when faced with an evening with friends I worry that Jim will exhibit irritation or anxiety ("this food is awful!" "where is that waiter?!").  I'm embarrassed by these things, worrying that people will only see it as rude behavior (which it is!). Once in a while he will say something that I know will hurt someone's feelings. I understand that it is part of the disease process, but for others it is likely seen as mean-spirited.

The filter that most of us have in our brain that keeps us from saying or doing something inappropriate does not work as well for Jim. The other day he said something disparaging about someone's (a stranger's) appearance. It was said loud enough where I was concerned that the person heard the remark. This is so unlike him. One of the things that first attracted me to him was his kindness to others and his gentle spirit, especially to those less fortunate.

For balance, I need to point out that many times he can be very sociable, very funny and a true joy to be around. I just never know what to expect when.

The struggle with word finding continues. I've been reading about Primary Progressive Aphasia, logopenic type, which is a type of dementia that is usually a variant of Alzheimers. It is notable for short term memory loss, problems with word finding and with repetition. This is a good link that gives the specifics.
https://ftd.med.upenn.edu/about-ftd-related-disorders/what-are-these-conditions/progressive-language/logopenic-variant-of-primary-progressive-aphasia-lvppa

The other thing about dementia is that on autopsy they often find "mixed dementia". In other words there is more than one type of dementia that is manifested in the brain.

I don't really know if PPA-logopenic is the correct diagnosis, but he certainly has these symptoms. He has an upcoming appointment with his PCP next month. When it gets closer to the date, I will make another attempt to see if I can go with him to discuss these concerns. So far he has not agreed to this as he does not think that he has any problems. While there is no treatment or cure, if the diagnosis was known and acknowledged I think it would be helpful, at least for me. At the same time I recognize that Jim may never acknowledge any deficits. Apparently this is fairly common for those with Alzheimers.

I've decided to be more open to joining a support group. I tend not to be a "group" person per se. But I figure it wouldn't hurt to look at my options and give it a try. I think that one potential benefit would to feel like I am not alone. My online support is wonderful! But perhaps some "face time" with others going through the same thing might be of benefit to me.

These days my brain filter is on high alert, and always running through the very specialized caregiver filter. I suppose in some way it is an attempt to compensate for Jim's brain filter that at this point is a bit askew. We are both adjusting to these life altering circumstances as best as we can. It gives me peace to be able to write these words and know that those who read are kind, compassionate and only wish the best for us.

Thank you dear readers. I so appreciate each of you who take time to read my blog.