Friday, January 13, 2017

Gratitude in the Land of Dementia



Since regaining his memory of our marriage, things have started to settle down. Every once in a while, he will still surprise me with something. This conversation took place yesterday:

Jim: "We're going to have to do something with our two properties."

Me: "You mean our home on Dogwood Way? Fortunately where we are now is a condo we have rented for just 3 months; we don't own it."

Jim: "No, I'm talking about the house you own and the house I own."

Me: "We jointly own our home on Dogwood Way. We had the house built over 10 years ago."

(I pause here, not wanting to overload him with too much information at once.)

Jim: (Just looks at a me.)

Me: "We lived on Elmwood Drive when we were first married 30 years ago."

Jim: "That's right."

Just prior to this conversation we were talking about something completely rational and logical. It catches me off guard when his memory fails him in such a profound way, although by now you would think it wouldn't surprise me.

The condominium complex we are staying in is relatively small, only 30 units. This works to our advantage. Everyone knows each other and the environment is very friendly. We have felt so very welcome from our first day here.

There is Coffee Hour every Thursday at 2:00. Everyone meets poolside with their mug, and some folks bring treats to share. Such a nice way to get to know each other.

And usually around 4:00 every afternoon folks will gather around or in the pool, ready to solve the world's problems, with a beverage of choice in their hand.

Jim's dementia has progressed to the stage where even in short social conversation the dementia is evident. The warmth, kindness and helpfulness of everyone here absolutely overwhelms me in a very good way.

The picture above gives you an idea of how close we are to the ocean. Jim's fatigue is very evident in this climate. We did a couple of walks on the beach, but it tired him out, and not it a good way. So our workaround is to enjoy the ocean view from our balcony. We are so grateful for the warmth and sunshine that Florida so graciously provides.

I'm still keeping up my guard and am on high alert. I need to remember that even very simple things can cause him distress. He needed a haircut, so we took a recommendation for a local barber less than 2 miles away. That morning his anxiety was at a very high level. The barber did a great job. Once we returned to the condo, Jim settled down. But the time leading up to the haircut was pretty intense.

I have a very mild cold, and not even worth mentioning. Except for the tailspin it has caused for Jim. Who knew? It's not a high level of anxiety, but it most definitely has effected his world. Is he worried about my health? Is he worried he will catch my cold? Or is it just something different that is upsetting his world in some way...

So on this early Friday morning I am feeling a lot of gratitude. Grateful that we are not up north, and more importantly grateful for the kindness of others in this community of Florida snow birds. As you might guess, most of the folks staying here are in their 60's or older. When I look around, I see lots of different health problems. Limitations from a stroke, heart disease, cancer, diabetes, and probably others I can't see. But we are in this together. A small community of aging adults, all caring for one another with kindness. I am so grateful.


Thursday, January 5, 2017

"I Have Never Been Married"

We left home just before another snow storm was about to come our way. The drive was uneventful, weather wise, and traffic was not too bad. We were on the road about 8 hours a day, allowing for mostly daylight driving.

The days were punctuated with questions and comments like "how did we get here?" "Whose car is this?"

The second night of our trip was very challenging for Jim. He became quite irritated and frustrated over seemingly minor things. Around 9:00 PM he announced "I'm getting out of here and going home! It's not that far. I'm not staying here!" I somehow managed to plead with him to not leave me alone. I thought that this strategy would work better than any other, and I was right. He finally got into bed and we both fell asleep, quite exhausted from the stress.

In the morning (our final leg of the trip) he seemed OK, pretty calm. Once in the car, the following conversation ensued:

Jim: "How did our paths cross to end up here? Did you fly here?"

Me: "We left our home two days ago and are driving to FL for the winter."

Jim: "Our home? How long have I known you?"

Me: "We met 39 years ago, and have been married for 30 years."

Jim: (Very long pause) "I hate to tell you this, but I have never been married. I'm sorry to have to tell you this, but you must be confused. (Long pause) "I hope you are not upset about this."

Me: (Decided to try one more time, ever so gently. Pointed to my wedding rings.) "Remember these? Remember the picture on our piano of our wedding day?"

Jim: (Looking at the rings) "Oh, you're married. This will make things awkward. Do other people know that we are here together? Will people be upset by this?"

At this point it just made sense to let it go. He was not upset at all during this conversation, in fact he was very calm. For the rest of our drive that day he treated me differently, as if I were an acquaintance.

It was a glimpse into our future, knowing that someday he will likely not know who I am. It was profoundly sad.

By the time we arrived at our condo,  he was still confused. As we unpacked the car, he pointed to a bin and said "what's in there?" I said "that is all of our financial information, our investments, banking information, and portfolio spreadsheets."

Jim: (Looking at me with one raised eyebrow and speaking calmly) "OUR investments?"

I just let it drop. But it still left me feeling so very alone, so incredibly sad. Part of the journey that is called the long goodbye.

We unpacked the car, got settled a bit and headed to the grocery store. Over this period of time, he started to come around. He asked more questions ("How did we meet?") and eventually seemed to be coming to the realization that we had a history together. At one point he said "Will you live with me?" I ran with this and replied "Well, we've been living together for over 30 years."

While standing in the checkout line (!)  he popped the question very quietly "Will you marry me?" So bittersweet.

Throughout the following two days it was recovery mode for his memory of our history together. He was very calm, very curious, and indicating that he was starting to remember. At one point, he became very quiet and concerned that he had forgotten our past together. It was the first time he has ever acknowledged that he had any problems with memory loss.

I knew that the travel and the different environment would bring challenges. It is known that anything outside the routine can worsen confusion for folks with dementia. I didn't expect that the confusion would involve our relationship. Having our friends here has helped with Jim's orientation. As soon as he saw them, he was happy and glad to see them.

We have survived another dementia challenge. I believe I handled it the best I could, given the circumstances. We've only been here for a few days, but already we are settling into a very nice, quiet lifestyle. Waking up when we want. Walking down the beach after breakfast, connecting with friends poolside, enjoying the wonderful seafood FL has to offer. Jim is more relaxed than I have seen him in a very long time. We're enjoying each other and our time with our friends.

But, and it is a big but, I am on super high alert. More so than at home. I will not leave him alone, even for a few minutes. I'm not sure my system at home of leaving notes (where I am, when I will return, cell phone number) will work here. So, it is more "togetherness" than I want, but at this point it seems the right thing to do. I'll skip the pedicure, lunch with the girls, going to the gym (Jim not interested at all), because to do so would put him at great risk.

I never worry about him wandering off (he is fearful of getting lost), but I'm just not sure how he would react if left alone for any period of time. We'll see, as time passes and he feels more comfortable with our environment.

Once again, thank you dear readers for stopping by. Just typing these words helps me immensely, knowing that by blogosphere friends are listening.


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.