Friday, June 16, 2017

Dementia Progression and Communication Challenges

In retrospect, looking back over the last 10 years, I remember observing personality changes that I found troubling and hard to understand. Jim, who always was an easy going, light-hearted guy, suddenly became quick to anger, despondent, and in general seemed unhappy. It was shortly after he retired that I first noticed these personality changes.

At first I chalked it up to retirement adjustment. But as time passed, it continued and seemed to worsen. When I would attempt a gentle conversation about my concerns, the response was steeped in denial and tinged with annoyance.

I'm realizing now that this was likely the start of his dementia journey; I just didn't recognize it for what it was. Then came the cognitive changes: confusion about the difference between a debit and a credit card, some difficulty with managing our investments, and many other subtle changes that were a harbinger of things to come.

Way back, when I first noticed the personality changes, I remember feeling hurt and confused. What happened to my sweetheart? Is this what our future looked like? It scared me, but I didn't know what to do about it.

Fast forward to today. Never could I have imagined that this is where we would be at this point in our lives.

Jim progression continues to surprise me. I just didn't think that the progression would happen as fast as it is. Some recent changes:

 - Sense of privacy is changing. Jim was sweeping our driveway. He stopped, unbuckled his belt, dropped his pants partway down and re-tucked his t-shirt. He's done similar things in public. Not to the extent of exposing himself, but obviously very inappropriate. I've tried a little humor ("Uh-oh! Someone might see your you-know-what!") But he doesn't get it. Not sure what I'll do about this. Probably nothing, as long as he is not exposing his you-know-what!

 - Jim is not able to use the hairdryer, even with demonstration, guidance and prompts. I now am learning how to style a man's haircut using the hairdryer. 😀

 - He no longer knows how to wash his hands. He calls for me and says "I don't know what to do". I can talk him through this using some physical guidance for hand placement, and helping him with the soap.

- Once in the shower, he no longer knows how to get soap out of his favorite shower soap container. Once I pour some in his hand, he can lather up and rinse his body.

For the last few months I've done all the "prep" for his morning routine: setting up the shower with towel, laying out his shaver, toothbrush and paste, laying out clean clothes. Once he was in the shower, it gave me about 10 minutes to make phone calls (to my mom, to our friend Mike) that were best made when I was alone. I'm realizing that I can no longer count on this time for myself. I'm guessing that it won't be too long before he'll need help actually washing his body and hair in the shower.

I do manage to find other times for privacy/myself. Jim is actually napping as I type this. He is sleeping quite a lot these days. Usually two naps a day. The other change is that he is now going to bed about 6:30.

When he first started to do this, I thought perhaps it was just that he was confused about the time of day. I would gently point out that it was still early, and that we had just finished dinner not too long ago. His response is always "But I'm tired."

He awakens in the morning usually between 6:30 - 7:30. I've decided not to be concerned about all this sleep. His body must need it. And, it does give me some time to myself which is a real bonus.

Communication continues to be our biggest challenge. Earlier today, out of the blue, he said "I've never had a used Indian." I could not have made that up if I tried! Where does this stuff come from? I have no idea. But it is typical of the kinds of things he will say. Most times things make no or very little sense. My response is always to smile, and nod my head in affirmation.

The hard part is when he is desperately trying to communicate something he needs, and I have no idea what it is. Keeping his frustration level low is always my top priority. Bathroom needs, feeling too hot/cold, hungry, bored....those are all things that are so important that he is not able to communicate to me. I tend to go through my mental checklist when I'm trying to figure things out. Sometimes i succeed, sometimes not. Doing the best I can is all I can do.

Some good things that happened this week..."Comfort level" toilet installed in our master bathroom. Thinking ahead to when Jim may struggle with this. It's good for my bad knees too! We had a whole house humidifier installed on Tuesday. Knowing that we will no longer head south for the winter, I want to keep our house more comfortable. I had an eye appointment that I knew would be lengthy. I had Mike arrive at the office before we did.The "story" was that Mike's wife was having a procedure, and he was waiting for her. Perfect! Jim was OK to wait in the waiting room with Mike while I had my appointment and picked out a (desperately needed) new pair of glasses.

Another week has passed, and changes have walked us further down the road of dementia. We know where this leads. It's the journey no one wants to take. But take it we must. Thanks for supporting me on this journey. And as always, thanks for stopping by.


Sunday, June 11, 2017

"He looks so normal!"

This comment was made by a friend of ours. She said it with a tone of incredulity, finding it hard to believe that he could have advanced dementia. In fairness, it is not someone who spends a lot of time with us. Jim does look normal. Sometimes dementia is called the hidden disease because you can't really see it. Spending a significant amount of time with Jim would quickly bring an awareness of the deficits. 

The other issue is  that dementia is associated with a much older age. At 68, Jim is much younger than most folks afflicted with this disease. We think of someone very old and physically frail when we think of someone with dementia.

Jim is so handsome. Beautiful brown eyes. A smile that would melt your heart. His black hair over the years has turned into a salt and pepper (mostly salt) color. He is trim and dresses impeccably. So yes, to look at him he looks "normal". And when among strangers, if the conversation is brief, no one would be the wiser. 

The driveway sealer guy came by the other day to give us an estimate. We happened to be outside. Jim shook the guy's hand, we made very brief small talk about the weather. And then Jim said "yes, I've seen you every day this week!". This very polite, kind guy paused for a moment, and then said "well, I've certainly been pretty busy". 

It's one of those comments that isn't seriously off, but enough off where you kind of wonder about it. 

When we have workers at our house, I almost always am able to give a "heads up" by phone prior to any work being done. This strategy has worked well to prevent misunderstandings. I've always found workers to be kind and understanding. 

Typically our days involve two separate outings. One late morning and the other mid-afternoon. Jim will take the lead "Let's get going!", having no idea where we would/should go. Our trips out of the house are always relatively close to home. We go to Wegmans almost daily. He loves it and it is a low stress trip. I am careful to avoid peak times when it would be busy. Going as often as we do, there are usually only a handful of things on our list. 

The other trip might be to Costco, or just for a short ride down some nearby rural roads. The trips are short, otherwise I risk an upset. As soon as we get home he almost always heads to the sofa to rest/sleep. 

Gardening and yard chores continue to keep me in the weeds and shrubbery too often for my liking. Jim enjoys sweeping the driveway, and will make it into quite the production as I work outside. I've had two encounters with snakes that caused me to retreat to a different part of the yard. I think they are garter snakes, but geez, both encounters the snake raised his ugly head and hissed at me! I wear my tall rubber garden boots, so that gives me a bit more confidence. But I just can't get used to the snakes! 

This is an interesting link. It connects the 7 stages (and substages)  of dementia with the corresponding expected duration of the substage, the corresponding mental age in years, and the MMSE score. Before I found this link, I would have guessed that Jim's MMSE score would be about 7 - 8. I don't know for sure, as he did not agree to the testing at the doctor's appointment. As far as the mental age, I don't quite know what to think of that correlation. But it is useful in that it is a reminder that expectations need to be realistic as the decline continues. 

Jim is at stage 6B, kind of. He is unable to do any of the preparation for getting ready to shower, including turning on the water and adjusting the temperature. I'm not sure what actually happens in the shower, but he always smells sweet and clean 😀.  He is in the beginning stage of some intermittent minor issues with toileting. 

One of my more recent observations is that Jim is totally just trying to get through his day and be able to make sense out of the world around him. Many times he is unable to process what is being said. Minimizing outside stimuli, waiting for a quite moment, and keeping my words short, to the point and without a lot of detail seem to work the best for Jim. A soft loving voice and a gentle touch or kiss all go a long way in helping Jim to feel more secure in his environment.

I have my moments where it still is just incredibly sad. Our future together is not at all the way we had planned. But, the good news is that Jim seems pretty content. His anxiety is so much better. What more could I ask? 

Thanks stopping by. I so appreciate each one of you.

Thursday, June 1, 2017

"As Long As It Is Not Number 2"

It's been a while since I posted. It is a bit of a challenge to find "alone" time that gives me the privacy to write.  When Jim naps, I use the time to do things around the house or make phone calls that are easier to do without Jim being so very present.

I continue to be so grateful for the improvement he has shown on the citalopram.  I really don't think that I could ask for a better response. As long as we are home and things are low stress, he seldom becomes anxious. I continue to be careful with out of the house activities, keeping them short, familiar and low key.

My hairdresser offered to come to our home to do my hair. I was a little nervous, not knowing how Jim would respond. But I figured it had to be better than taking him to her shop, which is about a 30 minute drive each way. Add the time spent in her shop, and it just spells disaster. Her visit went great! She is a natural when it comes to interacting. Jim responded so well to her. She offered to cut his hair while she was here and he agreed! So no more worries for me about having to leave the house for hair appointments. I'm so very grateful for her kindness and willingness to travel this distance.

Jim's confusion continues, and I believe is worsening. I'm not surprised by this, as this is how Alzheimer's progresses. He has the hardest time first thing in the morning and late afternoon into evening hours.

This morning was particularly difficult for him. He woke me up about 6:15. He looked worried and said "I don't know anything. I don't know what to do, or where to go. I don't know anything I am looking at."

This was absolutely heartbreaking. He wasn't agitated, just incredibly sad and worried. Fortunately he remembered me. I suggested having some coffee, watching the morning news, to see if that would help. At one point he said "I don't think I have any opioids in my system."

It was his way of trying to figure out why he was so confused. The only thing he could think of was that perhaps he had had some pain medication. Side note: Jim has never had any prescription pain medication with the exception several years ago, following hernia surgery. He did not tolerate them at all and had to switch to tylenol.

It was so hard to watch him in distress. I encouraged him to get ready for the day, shave, shower etc. A few hours later he noted that things were looking familiar to him. What a relief. I cannot even imagine what it would be like to wake up, not know where you are, not recognize your house, and wonder how you got there. Sounds terrifying to me.

I'm learning a lot about house maintenance, yard work and gardening. Most people will not relate to this, but I have to admit I hate gardening! I love being outside, but the pulling of weeds, edging, etc is not enjoyable at all to me. I purchased a battery operated edger and weed trimmer. This eliminates having to deal with gasoline. These things always remind me of what a beautiful job Jim did in keeping up with our landscaping.

Communication challenges continue.

Jim: "Where is the kitchen?' (We are standing in the kitchen as he asks this.)

Me; "Dinner is almost ready; about 15 more minutes."

Jim: "Oh, good."

Whew! Got that one right. I don't always get it right.

Jim: (Pointing to the light switch in the bathroom) "It might surprise the number 5."

Me: "Well, as long as it's not number 2."

We both laughed so hard! I hope no one is offended by the bathroom humor. But sometimes you just have to lighten things up. Got to keep your sense of humor. 𝩀😊

He also incorporates what he sees in the environment/on TV with what he is trying to say.

Jim: (While watching commentators discussing Trump pulling out of Paris Accord) "Where is the Paris Accord shirt?"

Me: Let's go look in your closet to see what we can find.

And so it goes. More confusion, more decline, BUT anxiety is so much better. So grateful for this. When I think about how things were 2 months ago, I remember thinking that I was certainly doing harm to my body and my mind, given how I was reacting to this high level of stress. Fast forward to today, and I am not nearly as stressed as I was before.

I know that things are only going to get harder, but with my stress level better controlled, I should be up to the challenges that Jim and I will face.

Thanks dear readers for stopping by. As always, my heart feels lighter!


Friday, May 19, 2017

Smack Dab in the Middle of the Land of Dementia

Jim went for imaging of his brain.  My explanation that it was a screening for those over 65 was accepted by him. I was ready with my companion card, and very glad that I brought it with me.

At check-in, there were several forms to fill out and sign. I filled out the forms, but when it came time to sign, Jim struggled. He managed to write his first name (hardly recognizable) and then turned to me and said "Will you do this for me?". I showed the POA to the receptionist, and then signed the forms for Jim. This was heartbreaking for me. At times like this, I wonder how it makes him feel. Does he realize that this is not normal? Or is he so focused on the difficulty of the task that he is just grateful that I am there to help him.

The imaging confirmed the diagnosis of Alzheimer's Disease. I was not surprised, but still, it is shocking in some ways.  After all this time, you wouldn't think so. But I still sometimes wonder how all of this became our reality.

Jim's anxiety is much better. The citalopram has worked well for him. There have been several instances that typically would result in high anxiety and anger. Now, his reaction is much more subdued. What a relief!

The one caveat is that while it helps with anxious situations at home, situations outside the home are still capable of producing anxiety. So I continue to be careful with where we go, keeping the time away from home short, and avoiding noisy, busy environments.

He is on the highest safe dose of the citalopram; maximum benefit will be evident within the next 2 -3 weeks. I'm very grateful for the improvement I've seen so far. When I think back to how things were just prior to starting the medication, the difference is astounding.

Jim still does not tolerate me being away from him. He has been less tolerant of lunch with Mike, or even a visit from Mike. My thinking is that as Jim's deficits increase, he feels less secure away from me. My good friend Jan has given me lots of encouragement and some good advice on options to explore, as I try to figure out ways to make time for myself away from the home.

I've written before that Jim sleeps a lot. The amount of time he sleeps seems to be increasing. During the day when he naps, I take full advantage of the time. In the evening he goes to bed about 7:30. Although he usually will come out of the bedroom every 10 minutes or so, just to check on me. He is the most confused in the evening. Lately he has been incorporating what he sees on TV into his reality. Last night we were watching the news about the latest Trump scandal, and Jim said "Trump said that to me yesterday."

Language skills continue to decline. But I am getting better at interpreting what he needs. Sometimes he pantomimes, gestures or points while speaking, which helps a lot. Sometimes he makes a declarative sentence that makes no sense at all. When he does that, a neutral response by me helps prevent frustration for both of us.

I've written before that I never correct Jim if he says something that is wrong or inaccurate. The exceptions are if it is something of danger, or if it is of great importance. Something I have been thinking about are the times when Jim does not remember who I am. Should I correct him on this? Is it really important? I think it is, especially if he is worried or upset.

One evening last week, he didn't know where he was, how he got here, and "Where is Carole?". He was so distraught, it made sense at the time to gently orient him. At some point I suggested we just go to sleep and talk about everything in the morning. Of course in the morning he had no recollection of our conversation from the night before.


The land of dementia. No one wants to be here. But here we are. Smack dab in the middle of it. Making the best of it, finding our way, and learning as we go.

Thanks for stopping by. My heart feels lighter. I appreciate each one of you!




Tuesday, May 9, 2017

"I'm Carole, version 1 - 10."

 As I have written before, Jim does not always remember who I am. Sometimes it is fairly easy to help him remember, other times it is a bit more of a challenge.

It was after dinner, and he was concerned:

"Where is Carole?"

Me: "I'm Carole. I'm right here."

Jim: "No, I mean the other Carole."

Me: "Well, I am Carole, version 1 - 10."

We both laughed. I took what could have been a stressful moment and managed to turn it around with humor. I'm not always that successful, but I do find that a good dose of humor goes a long way in soothing the troubled waters.

We don't go to restaurants anymore. It is just too stressful. The difficulty with the menu, the noise, the people, the lighting. It just isn't worth it. The other night it occurred to me that we could order takeout from the local Chinese place, pick it up and bring it home to eat. Jim thought it was a great idea. We settled on what we were going to order, I made the call, and we headed out the door to pick it up.

It was a short, five minute ride. In those 5 minutes, Jim became quite upset. He insisted he did not agree to the plan, and angry because "You should have checked with me before ordering food!" We picked up the food, and I ended up throwing it away. He was so upset by the incident, it just seemed like I needed to get it out of site. I quickly threw something else together for dinner. He seemed to calm down.

About an hour after dinner he became upset. "Can't a person get any food around here? Where is dinner?" He had no recollection that we had already eaten. And so it goes. I think the anxiety from the takeout food incident was still circulating in his brain.

Overall, since starting on the citalopram for his anxiety I believe that he is doing better. At least this holds mostly true for when we are at home, with no distractions and nothing out of the ordinary. He still becomes quite anxious with anticipation of any plans, appointments, any changes etc.

Activity outside the house is always vulnerable to an upset. The full effect of the citalopram may take another 4 - 5 weeks.  So perhaps his anxiety will improve further. But at the same time, I realize that nothing will make everything OK all the time. Dementia just doesn't work that way. There will always be challenges.

When I look over the past year I realize that Jim has lost a lot of ground over a relatively short period of time. There are a lot of theories out there to explain the differences between dementia that progresses more slowly, versus dementia that progress more rapidly.

This link has been quite helpful in preparing me for what to expect. When I look back, I realize that a year ago he was in stage 4. He is now in the beginning of stage 6.

Language has been more challenging for him, and I continue my strategy of responding with a neutral response when he says something I don't understand.

Today he wanted me to "find the staff". He also wanted me to "take care of the trees". I responded by saying "Is it OK if I do that tomorrow morning?" He was quite receptive to this delay. And of course he will have no recollection of this conversation.

Jim's receptiveness to Mike is intermittent. I never plan for time to myself, because I never know if Jim will be agreeable to spending time with Mike. Those few times when Jim has spent time with Mike have been nothing short of wonderful for me. I'm hoping that as time passes, the full effect of the citalopram will help Jim to be able to enjoy more time with Mike.

Jim is scheduled for a CT of his brain this Thursday. How do I get him there? Well, I've told him that all people 65 and older are encouraged to be screened for vascular disease. I told him that I've already had the test, and that the doctor would be scheduling one for him too. When I told him this, he thought it was a good idea. I won't bring it up again until the morning of the appointment. I hope he goes, and that it is not too stressful for him. I'm ready with my companion cards, and I will also write on the card that loud voices are upsetting to him. I'm also realistic in that he may not agree to go, or may become so anxious that it is not worth doing. We'll see. Either way is OK with me.

My top priority these days is to keep Jim happy and content. Every week that passes I get better at it, as I am always learning from Jim how best to help him through this next stage of his life.

Another post is written. Thanks for stopping by, and thanks for listening. I so appreciate each one of you.


Friday, April 28, 2017

"His Dementia is Very Advanced."

Why were these words so shocking to me? Perhaps because it was the first time I heard a medical professional confirm what I already knew.

There are times where it all seems like a bad dream, as if it is not real. How can this possibly be happening to us?

These past two weeks, there seems to have been a further decline. Every day, there is at least some lapse of his memory as to who I am. It occurs in the early evening or when he first wakes up in the morning. Sometimes, it is both.

Yesterday afternoon, just after lunch, he started talking about how the police were watching me, that I was a suspicious person, and that the police thought I was threatening.  I used diversion, turned on the TV, and it seemed to break this train of thought.

Jim's first appointment with Dr. S. (gerontologist), was late yesterday afternoon. The office staff are wonderful! We arrived 10 minutes early, and they took us right in. I provided up to date medical information and background, as well as a copy of his Health Care Proxy and Power of Attorney.

The nurse attempted to administer a Mini Mental State Exam (MMSE). This did not go over well at all. Jim told her that the questions were childish, and that "people have been after me for 20 years about this!".

At this point, Dr. S. came in to examine Jim. Through a skillful interview process she was able to ascertain his mental status. Jim did not object to this part of the evaluation. Although he did ask her to "Stop yelling in my face!".  (Over the last year or so, Jim has had a heightened sensitivity to volume of speech and any noise. I wish I had thought ahead to let the staff know this.)

While the nurse was drawing Jim's blood, Dr. S. reviewed with me her clinical findings. Her assessment that his dementia was very advanced really took be aback. She would like imaging of his brain (I expected this), but she is realistic that he may not agree to this.

We both agreed that the number one priority for Jim was to help him with his anxiety and agitation. She has prescribed citalopram at a reduced dose to start, to be titrated up if tolerated. This medication is often used to treat depression, but it also is used for treating anxiety and panic disorders.

Her plan is to start Aricept after six weeks of the citalopram. By starting just one medication at a time, it provides a clearer evaluation of the clinical response to each medication. She reminded me that medications like Aricept improve memory "only a little bit". It may help some with activities of daily living. Here is an interesting article that discusses the marginal improvements that are seen with drugs such as Aricept.

I'm not discouraged by that. I've known that cholinesterase inhibitors do not stop the progression of the dying brain; it simply improves some of the symptoms for a period of time (12 - 18 months). It doesn't help everyone, but does help some folks with dementia. Many times it is viewed as a way of delaying the need for institutionalization.

My brain is spinning. At times it just seems overwhelming. I'm hopeful that the citalopram will help Jim with his anxiety. This in turn will allow me to line up the help I'm going to need for Jim's future care. His agreement to others being in the home is key to everything.

Jim signed the Power of Attorney in 2012, giving me the power to act on his behalf. Five years ago! I knew then that I would be needing that POA for Jim. It's hard to remember exactly what his deficits were at that point, but they were such that I knew I had to get our affairs in order. I'm so glad I did.

Well, another post is written. Thanks for stopping by. My heart feels lighter already.

Monday, April 17, 2017

"You Need to Go Home"

It's been a rough few days. Jim has needed more than the typical attentiveness from me. I'm tired, but cannot sleep, which is unusual for me. Jim doesn't know who I am. But he is certain I am not Carole.

Jim's anxiety has been pretty high the last few days. This has required super high attentiveness on my part. It requires a presence; not just being in the house with him, but being in close proximity. I tire of the endless TV that helps to keep him entertained. My relief from the endless stuff on TV is my beloved math puzzles, KenKen. I love the challenge, and it actually is relaxing to me. I print one out, put it on a clipboard and go to town on solving it. My favorite ones are the 9x9, with 4 operations, expert level. I can claim no credit for my skills in this department; I inherited my math skills from my dad.

But today was different.  Jim took the clipboard from my hand and made some disparging comment. So, I set it aside, and focused on the mindless TV show he was watching. So much of what he said today was nonsensical. As I listened to him talk, it was almost like I was observing someone with a psychiatric break in reality. But that is what dementia can sound like. Words put together that don't make sense.

This is so incredibly sad. Jim doesn't know I am Carole, his wife. Who does he think I am? When I attempted to show him our wedding picture, rings etc, it did not change his thinking.

We finally went to bed, but he could not sleep. At one point he said "You have to go home."

Me: "I am home. I am here in our home that we have shared for many years."

Jim: "You're confusing me. You need to go home."

Me: "Why don't we wait until the morning to sort this out?"

Jim: "But you can't sleep in this bed. There is a third party...."

So, I said that I would sleep on the sofa because it was so late, and we would figure it out in the morning. He accepted this.

What will tomorrow morning bring? I don't know.

Most days I feel strong, and I know that I can do this. But in weak moments like tonight, I question myself and my ability to stay strong. I know we need help. And there is comfort in knowing that help is on the way.