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...