Saturday, February 18, 2017

Dementia Had a Late Night Last Night

Things always look better in the morning, and this morning I feel especially grateful for this truth. I feel so bad for Jim. This character called dementia really had a grip on him last night.

The evening started out so pleasant. We made plans with our friends to go out to dinner. They stopped over for an appetizer and drinks prior to dinner. As we enjoyed our incredible view of the ocean, we enjoyed each others' company and appreciated our good fortune to spend the winter together in such a lovely, warm, friendly community.

At dinner, the restaurant was busy and noisy. Our plans to have an early dinner did not work out as planned. The meal was delicious, our waiter was attentive and funny, but the noise, confusion and busyness took its toll on Jim. No disasters during the meal, but I could see the signs of Jim's discomfort.

By the time we got home and said good night to our friends, Jim was in overdrive. I'll spare you the details, but Mr. Dementia reared his ugly head, inconsolable, angry and upset. The focus was on the temperature in the condo. I've mentioned before the struggles Jim has with temperature regulation. On a good day, he'll put on a hoodie, or take it off, or mention to me that the thermostat needs adjusting. On a day when dementia has taken over his brain, the conversation becomes a confusing entangled mess with no resolution in sight.

Yes means no, hot means cold, nothing I do is right, on and on.

Dementia finally gave it all a rest around 2:00 AM.

I am getting better at mentally separating what Jim says and does, as opposed to what dementia says and does. It is an important distinction for the caregiver. It certainly helped me last night, as Mr. Dementia was storming around.

I read somewhere that you should "never argue with dementia, because you will lose". (I can't remember where I read it, so unable to give credit. I think it was an Alzheimers newsletter.) Notice that it doesn't say that you won't win, instead it says you will lose. Important distinction. It is normal in all relationships to have disagreements, arguments. In a healthy relationship the focus is on working out disagreements in a fair way, without attacking each other on a personal level.

Dementia does not know these rules.

When we woke up early this morning, Jim snuggled in close to me, telling me how much he loved me. There was no mention of last night. I'm not sure how much of what happened he remembers, but I am certain he remembers how upset he was last night. And I'm guessing he remembers that I was the object of his upset.

This post by Dr. Elaine Eshbaugh is great. It says (much better than I can) how emotion lasts longer than cognition. This is true for everyone, but especially for those with dementia.

Jim has fallen back to sleep this morning, exhausted I am sure by all that happened. It's comforting to me that his body is now in restore mode, trying to make up for his sleep loss from last night.

Dementia: we have our good days, and our not so good days. It is always present. But I am getting so much better at emotionally separating myself from what the dementia is doing, as opposed to what Jim is doing.

Another post is written, and once again it feels good to share what is on my mind and in my heart. Thanks for stopping by.

Wednesday, February 8, 2017

Dementia: Some Things Change, Some Stay the Same

I had an unexpected health problem over the weekend. I ended up going to an urgent care and ended up on antibiotics and an anti-inflammatory for a swollen, red, painful ankle. I'm on the mend, but it remind me that I am not invincible. Actually, I am very healthy. But no one is exempt from an unexpected health problem. What would I have done if it was something more serious? Of course I am talking about Jim; I don't know the answer, but this has given me a lot to think about.

Jim has become very attentive to me, expressing concern for my health. This is the old Jim that I remember so well. Two weeks ago when I had a cold, his reaction was quite different, almost angry at me.  Dementia has so many ups, downs, twists and turns, many times I just don't know what to expect.

Jim's understanding of money has changed on many levels. He is no longer able to count money, make change, and his perspective on the relative cost of things is way off. The other day we drove by a gorgeous house. I'm sure it was well over a million dollars (beach front!). Jim's comment was that it was very expensive, "probably close to $50,000".

When buying something, I now go out of my way to avoid talking about the price. What ever the price, he will comment that it is too expensive. He was never like this before. Eating out happens rarely for a lot of reasons. We seldom make it past looking at the menu. Reasons for not staying include "it's taking too long", "it's too cold", "crappy menu", "it costs too much". I never try to change his mind once he decides to leave (it would only make him angry). But I have developed some work arounds that occasionally work. If he mentions the price, I immediately tell him I have a coupon for 50% off. By the time the meal is over, he has forgotten about the coupon, his reading glasses are safely tucked away, and I grab the bill.

It's almost like his brain is in an economy from 20 - 30 years ago. So, to keep the peace, I use alternative facts (of course I did not invent that term :-)) Ha Ha.

One thing that has not changed is Jim's sense of humor. It was always a huge part of our relationship. We had one of those easy going, light-hearted loving relationships. Laughter and humor was always a big part of it. Since dementia invaded his brain, anxiety many times gets in the way of being able to appreciate the humor in life, but it still happens at times and boy does that make me happy!

I'm not a big TV watcher. But there is one very funny show that I recently discovered. I smile and laugh my way through each episode! And Jim finds it equally funny! That is huge for me. The show is called The Carbonaro Effect. It is hilarious. It's on Tru TV. So here is something very funny that we can still share, joke about and spend time together enjoying each other's company. Stress free!

I am so thankful that his wonderful sense of humor is still there inside of him. He may not remember what we laughed about 5 minutes ago, but I see it as enjoying the moment as it is happening. I also know that when you are happy and laughing some very good things are happening in your brain that make you feel good. And even if his memory fails him on what he was just laughing about, the feel good happiness remains with him for a while.

I continue to practice distancing to help me deal with the emotional upsets. I found another resource  on emotional distance that I find helpful. The more upsetting the moment, the harder it is for me to remember to use distancing. But I'm working at it, and hopefully it will get easier.

Dementia: some things change, and some stay the same. As our journey continues I know that more changes are headed our way. I hope to continue to look for the positive and appreciate the joyful moments we can still enjoy together.


Friday, February 3, 2017

I Have a Plan



I'm usually pretty good at figuring out what Jim is trying to say. But once in a while I can't. Usually it doesn't bother him, but lately he expresses anger. Today he said a vague, partial sentence: "what about ....(very long pause)". I suggested several things I thought he might be trying to say. None were right. Jim became quite upset, saying "How am I supposed to do this! You're no help!"

I know that he is frustrated that he can't express what is on his mind. How discouraging this must be for him! And yet it still hurts, because I know I am trying so hard to help him, even though I am not successful. I'm practicing some of the tips I've learned about resilient thinking, mental distancing and trading pain for self-compassion. These situations are still hard, but these activities help me to move out of the dumps that I usually find myself in after an upset. 

He is starting to have difficulty with time. He was looking at an analog clock and said to me "It's five six. I don't know what that means." (It was 6:25) Today he was telling me how cold he was (it was 76 degrees in our condo!). He looked at the digital display on the stove clock and said "It's too cold! It's five point four five!" It was 5:45. He somehow thought he was looking at the thermostat readout.

This afternoon he was certain that his glasses were lost, and he could not find them. He has a pair of glasses for reading, and one pair of sunglasses. I showed him the shelf where both pairs of glasses were. He was not convinced. And I could tell that if I pressed the issue, it would just anger him. I'll spare you the sad details, but I joined him for over an hour looking in every nook and cranny for a nonexistent pair of missing glasses. He finally came to the conclusion himself that the two pairs of glasses were the only ones he brought with him. Whew!

So, I have a plan: 

1) The transition is being made for his health care to be managed by a gerontologist. I'm looking forward to working with her to provide a better quality of life for Jim. I know that the medications for dementia do not halt the progression of the disease, but at this point I would welcome a steadiness and hope for some improvement in his day to day functioning. Something for the anxiety is desperately needed as well.

2) Plane tickets have been purchased for the flight home in March. Jim's friend Mike has graciously offered to drive our car home for us. There will likely be confusion, but one day of confusion is way more manageable than three.

3) Blocks of time for me: Once we are home, I plan to hire help (under the guise of housekeeper, handyman, friend time) for 3 blocks of time each week. This will allow me to keep my own appointments, go to a support group, lunch with a friend, go to my favorite YMCA class, see my mom. 

Thanks for stopping by, and as always, thanks for listening!

Friday, January 27, 2017

Will I Do This Again Next Year?

A good friend of mine, who understands our struggles, asked me a couple of weeks ago if I regretted our trip to FL. At the time I said no, that in spite of the challenges, it was worth it. Now I am not so sure. Will I still want to do this again next year? I don't know.

Jim continues to have significant, intermittent problems with his memory. His confusion is not as profound as experienced in our travels from home to FL. But still, enough to be concerning. He occasionally asks if we are married, asks if I have any brothers and sisters, how long have we known each other, and so on.

I have wisely chosen to minimize social activities with others. I'm finding that it is just too overwhelming for him and often leads to upsets, anxiety and more confusion.

I become overwhelmed when I think about our trip home. To that end, I have been talking to Jim's friend, Mike, about having him fly here, drive our car home, and Jim and I would fly home. The flight would be a 3 hour direct flight. The hard part of flying home would be navigating Orlando International Airport. If you've ever been in this airport you will know what I mean. It is overwhelming even to someone without dementia! And, I would have to come up with an excuse as to why we were flying home and having Mike drive our car. (Maybe a "mom emergency"?). I'm still thinking this through.

The progression of Jim's dementia continues. As I look over the last year, it has been a fairly steady loss of skills and memory. It seems to be a fast progression, at least to me, but I also know that every journey is different. I've also have heard that the younger a person is, the faster the decline.

I'm reading a great book The Telomere Effect: A Revolutionary Approach to Living Younger, Healthier, Longer. This is the description by Amazon.

"A groundbreaking book coauthored by the Nobel Prize winner who discovered telomerase and telomeres' role in the aging process and the health psychologist who has done original research into how specific lifestyle and psychological habits can protect telomeres, slowing disease and improving life."

The research was done on stressed out caregivers. And the best part is that the authors provide very specific things that you can do to manage the stress and show that you can change your response to the stress that comes from caregiving. This in turn, lengthens the telomeres, providing you with a healthy, longer life. 

Some important concepts of the book:

 -  Resilient thinking

-  Trading pain for self-compassion

-  Waking up joyfully

-  Distancing (mentally) from negative thoughts and emotions

As I read the book, I'm pleased to discover that there are some things that I am already doing. For example, they talk about the dangers of ruminating over negative thoughts and emotions. I'm pretty good at letting this stuff go. I'm quick to forgive and move on. 

Probably the hardest part for me is when I am in the moment of one of Jim's upsets. I had some practice this afternoon when he became angry and upset "Why do you always tell me things I already know?!!!" (He said this after asking where the garbage recepticle was, and I answered.) This was a minor upset that didn't last long, but gave me the opportunity to practice resilient thinking and distancing mentally from my negative thoughts and emotions. 

So the journey continues. I'm grateful for the learning opportunities along the way. And I am grateful for all the kind readers who stop by as we learn, support and encourage each other. 








Friday, January 20, 2017

Our Fragile Reality


The above photo is actually from last year. This moment was captured by my niece, who was visiting us with her husband. We were enjoying an evening sunset walk on the beach. The contrast between last year and this year is pretty dramatic. Last winter, Jim's difficulties were starting to show through to others. I remember awkward moments with my niece and her husband, as they witnessed Jim's low  tolerance for anything even slightly frustrating. Jim's language skills were still pretty good, and only once in a while would he stumble with a search for the right word.

As I have mentioned in a previous post, the folks who live in our condo complex have been wonderfully kind and caring. Although Jim and I had an awkward moment earlier this week. One of the local residents (who apparently did not realize about Jim's dementia) stopped us on the walkway to ask Jim a clinical question. Apparently he had heard what Jim did for a living prior to retirement. He showed Jim a book he had in his hand and asked him if he could give his opinion on this particular clinical theory.

He said:  "I don't need a thesis on this topic, but if you could summarize the basic tenants of this theory, and what your opinion is, I sure would appreciate it."

Oh my goodness. I panicked for a moment. Jim actually did OK. He said some very vague things, like "there is a lot written about that" and "lots of different opinions on it" etc.

I finally said: "well, they are waiting for us so we better get going now. Nice to see you again."

About 20 minutes later Jim had a total overreaction and upset to some minor incident. At first I didn't see the connection, but as I thought about it later, I am certain it was related to the stressful interaction that we had with our condo neighbor.

Jim and I both retired from professional careers. I'm not too keen about others knowing what we used to do for a living, because I'd rather people define and know us about who we are now, not based on what we used to do for a living.

I thought for a very long time about how I could have handled the situation better. I finally came up with a good response, and if anything like this occurs again, I'll be ready. I'll simply say:

"Jim and I both retired from stressful careers. We made an agreement that once we retired we would no longer talk shop."

I mentioned this to Jim, and he was visibly relieved. He obviously knew at some level that he could no longer keep up his end of a clinical discussion. Sometimes I wish I knew exactly what his self perception is.

There have been a few more instances where Jim has been confused about where we are, how long we are staying, and thinking that he drove his car here etc. It makes me realize how fragile our reality is. It is a very sobering thought. How will the next few years play out? I don't know, and maybe it is good that I don't know, at least at this point.

I'm determined more than ever to enjoy our life together now, today, in the present, future be damned.

Today is Jim's birthday, turning 68. There is a  rocket launch scheduled for this evening, which we will watch from the beach in front of our condo. What a great way to celebrate!

Thanks for stopping by. My heart feels a little lighter each time a post and push the "publish" button. Thanks for listening.




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.