Saturday, March 25, 2017

Living In an Altered Reality

Lately, Jim has been struggling with increased anxiety and agitation late afternoons and into the evening. Over the last couple of months, I have seen a worsening of this very concerning change. It is often referred to as sundowning. This website suggests different theories of why this happens, but no one knows for sure. There is a list of possible causes and coping strategies, all of which I am taking to heart, as I try to understand and help Jim.

Confabulation is another concept I am becoming sadly familiar with. For Jim, it is more likely to occur later during the day, hence the association with sundowning.

A couple of days ago he took a nap in the late afternoon. When he awoke, he was as confused as I have ever seen him.

"Where am I?"

"How did I get here?"

(Looking out the windows toward the ocean) "What am I looking at?"

I gently answered his questions, remembering for the most part how important it is to answer simply, not overloading him with long, confusing (for him) details.

It did not go well at all. He became extremely agitated and angry.

"How could you do this to me?"

"You woke me up and painted this whole picture! What are you doing to my brain?"

Of course I hadn't woken him up. And I was simply trying to help orient him by answering his questions. But remember, you don't argue with dementia; you will lose. And you don't reason with someone who is incapable of reasoning. It will only aggravate the situation.

Jim:  "You could fix this right now!"

Me: "How?"

Jim: "You can change the picture!!!"

He was so angry at me. He truly thought that I had woken him up and given him false information about where we were and how we got here. At least that is what I think he thought. But I could be wrong about that.

When he is that agitated, it is very hard for me to keep calm internally.

I quickly realized that disagreeing with him or attempting to reason with him was not going to work. So, I did something very strange. I apologized to him for my actions. And, I told him that I was confused. And that my confusion was the cause of what happened.

What else was I to do?  Knowing how angry he was, I wanted to say something to dissipate that anger. Surprisingly he accepted this, and it helped him to calm down. He actually expressed some worry for my state of mind! ("Should you see someone about your confusion?")

Was this the right thing to do? I really don't know. But his level of agitation was quite concerning, and I was desperate.

Yesterday afternoon he wanted to take the trash down to the receptacle. He has done this before; it is a very short distance and within sight of our condo. Sparing the many painful details, when he returned, he accused me of locking our car (huh?), cursing at him (something I have never done), making him go back and forth 4 times, and putting 4 people in the back seat of our car. Oh my goodness.

He was so angry at me. But I have to realize that in his mind, all of the above is true! In his brain, in his reality, I was mean to him, so of course he is angry at me.

Confabulation; the curse of dementia.

For those who have been following my blog, you know that Jim's doctor prescribed a sedative for our flight home. The prescription provided some extra pills. In desperation, I gave him one yesterday afternoon following the above incident. He was inconsolable, and I just did not have any more rabbits in the hat. It worked.

If confabulation is the curse of dementia, sometimes amnesia can be a blessing. Jim has no recollection of the above two incidents. What I do not know, is if he carries a residual feeling of anger or anxiety. Maybe he cannot remember what happened that made him so upset, but does he remember feeling upset? I don't know.

Is there a good option out there for helping Jim with his anxiety? I hope so. The prescribed anti-anxiety pill is short acting, lasting about 4 hours. I'll be very relieved when we meet with his new gerontologist, Dr. S., and see what she can recommend.

Any time that I get tempted to feel sorry for myself, I am reminded that Jim is the one who is suffering with a damaged, dying brain; not me.

I can't wait to get home. We leave Monday. Plans are made. I received a confirmation email from JetBlue regarding the "Greet and Assist" service.

Over the last 5 days I have been gradually, intermittently talking about our flight home. It's been tricky. I can't just spring it on him at the last minute. At the same time, it's important to not overload him with too much information at any one time. Perhaps this has been the source of his increased anxiety/agitation over the last few days?

Yesterday morning he completely packed his suitcases and toiletries. I gently suggested leaving out enough clothes etc for the next couple of days. I don't think he could process what I was saying. So I just let it go. When he gets ready for his shower this morning, I'll go into his suitcase and pull out clothes for today.

All of the wonderful folks in our small community are having a pot luck on Sunday for all the snowbirds who are heading home. It will be a nice opportunity to say goodbye.

Another post is written; thank you dear readers for stopping by. The kindness from those who comment always touch my heart.

Tuesday, March 21, 2017

In the Time it Takes to Shower...

I can accomplish a lot! While Jim showered yesterday morning, I contacted JetBlue and arranged for their "Meet and Assist" service. It is available for those with special needs, whatever those needs might be. Here is a link that I found helpful.

Once we park our car, we will proceed to curbside check-in. Someone will be waiting for us to guide us through the airport, get us to the head of long lines, arrange for private security screening, and provide "silent boarding". This allows us to board first, get settled in our seats, prior to the typical mass confusion that follows with routine boarding.

There will be some down time, while we wait for boarding. I've got some of Jim's favorite Car and Driver magazines that I stashed away. He is a car enthusiast and will enjoy looking at the pictures and reading the short articles. I also will pack some snacks and drinks so that we don't have to worry about navigating the airport, trying to obtain food at the busy restaurants.

I'm not a person who cries easily. But every once in a while I catch myself with tears streaming down my face. After I hung up from JetBlue I had one of those moments. It was a combination gratitude, relief, jangling nerves, and I'm not sure what else.

I had another one of those moments when I received a call back from Jim's doctor about the need for a sedative. He graciously prescribed an anti-anxiety medication. Prior to hearing back from the doctor, I really did not know how we were going to make it home. I imagined a full blown anxiety attack at the airport, with problems going through security, waiting in line, fighting the crowds, on and on.

With the "Meet and Assist" service and some anti-anxiety medication, I think we will be OK. The doctor prescribed enough pills so that I have been able to do a test run to see how Jim responds.

Jim's language skills continue to decline. There are a lot of half started sentences that he is not able to finish:

"It's almost like ..."

"I need to ...."

"Once it will be...."

Follow up questions by me to try to understand what he is saying are generally not helpful, and actually will frustrate him more, with a response like "You know what I mean!!!"

So instead, I have been responding with vague answers myself, such as:


"I think so..."

"I'm not sure..."

This seems to work better overall; less frustrating for Jim and less frustrating for me.

I continue to learn as we walk this dementia journey. I read an article recently that enlightened me to the fact that reasoning is an ineffective strategy for someone who cannot reason. This has been a challenging lesson for me to learn. When you think about it, reasoning is the basis for a lot of human discourse. With dementia, the rules change. I still don't have this figured out completely, and probably never will. But I am slowly realizing and trying to adapt to the fact that when Jim is struggling, all my reasoning will likely have very little impact on him, other than to possibly frustrate him.

His brain is dying. But in spite of that, I still have my sweetheart. At least for now. I know that there will come a day where it will be hard, maybe impossible, to see beneath the dementia that has taken over his brain.

Until that day comes, I strive to make the best of each day and appreciate the love and the life that we share together.

Tuesday, March 7, 2017

"Is My Mother Still Alive?"

This is a question that came out of the blue! It totally caught me off guard. It was incredibly sad for me as it represented a worsening of confusion. Jim's mother developed dementia in her 60's. Together, Jim and I provided care for her, and she was able to stay in her own home up until a couple of months prior to her death, following a major stroke. We had hired help during the day while we were working, and after work, Jim and I took turns spending late afternoon and into the evening with his mom. He took such good care of his mom! He was always patient, loving, caring and always wanted the best for her.

She died in 1999. When I answered his question about whether she was still alive, he accepted it, was sad, and then moved onto a different topic. It almost was like he was trying to sort out things in his mind.

Jim's level of confusion seems to have worsened over the last week. We've had daily, multiple conversations regarding where we live, what our house looks like, what cars we own, on and on. Fortunately I have pictures of the exterior of our house, as well as a couple of good pictures of our great room.

He's not been upset about it, just very confused. Within minutes of reviewing where we live and showing the pictures, he asks again, and again, and again.  It's incredibly sad to see this loss. The only saving grace about this is that it has not caused him to be angry or upset, just confused.

I have all the patience in the world! I'm not kidding. To me, this is the easy part of helping Jim with his dementia. I am a patient person by nature. And it feels good to be able to offer some reassuring, orienting information that hopefully helps him through the moment.

This morning when he woke up, he said "I've got to get going; I've got to get to work!" He was visibly relieved when I told him he was retired. He wanted to know more details, (when? from where?), and was very happy that he didn't have to go to work.

Regarding practical matters, I'm continuing to learn work arounds, as I face the challenges of Jim's decline. Lately when he makes a sandwich, he takes the knife from the chicken salad and then places it in the mayonnaise. I've thrown out a couple of jars of contaminated mayonnaise over the last week or so. It is not helpful to remind him; he will not retain that information and I risk upsetting him by the reminder ("I know that! You don't have to say that!"). So my work around is to buy mayonnaise in the squeeze bottles. No possible risk of cross contamination, and it is pretty easy to use.

Laundry is abundant! Jim has several changes of clothes as he gets ready for the day. All of the changes end up in the laundry. So the white polo shirt he put on for 5 minutes, and then took it off to put on a t-shirt, ends up in the laundry. He sweats profusely during this time period, indicating to me how stressful it is to find just the right clothes to wear for the day. I feel so bad for him. My attempts to help him pick out clothing appropriate for the weather/situation generally are not helpful for him. So, I've learned to just let him struggle through this, rather than try to help. My attempts to help just seem to add more stress.

Jim's sudden worsening of his dementia symptoms makes me wonder if there is perhaps a vascular dementia component. He was diagnosed with hypertension and high cholesterol many, many years ago (his dad died of heart disease when Jim was only 20). He was not properly treated for his hypertension, high cholesterol until he came under the care of Dr. C. So vascular dementia is certainly a possibility. In addition, he was a smoker. He finally quit, after struggling for many, many years with unsuccessful attempts to quit.

None of this really matters of course. It is more of a clinical curiosity and represents my need to understand what is happening.

Jim asked today (several times) if we could go check out his car. Each time I responded that his car was 1200 miles away, and that we had decided to wait until winter was over before heading home. Each time, he accepted this explanation.

And so, another week has passed, and unfortunately I am witness to another significant decline. I am so looking forward to going home. My plan is something that helps me to stay strong. I know that the support groups are going to be a big part of my survival in the future.

I have to give a shout out to Jabberwalky, who has been an incredible support to me, both through her blog and through our correspondence. She is the one who helped me to understand that once you have accepted your role as caregiver, things get a bit easier (it is never easy, of course). In other words rather than trying to fit caregiving into your life, you recognize that caregiving is your life. Once you have accepted that, everything else seems to fall into place and flows just a bit easier.

Writing this blog is so therapeutic for me. But I also hope that others who may be traveling this sad journey of dementia will find some support as well as camaraderie. Thanks for listening, and as always, I so appreciate each one of you.