Telephone Tribe

August 13, 2021August 13, 2021 Shirleyjdietz2 Comments

I’ve just read a post in the online support group for dementia caretakers that made me think. It was about how those with a diagnosis of LBD, who have been good friends with many in better years, don’t hear from their friends any more. Actually it was a caretaker writing the post, who was sad that the friends didn’t even contact her to ask how her husband was. She was wondering what their excuses were. Were they unable to handle the changes they saw in him? Were they afraid dementia was contagious, or that they would somehow get it? Did they think that their absence wouldn’t be noticed by anyone so why bother?

My husband who has Lewy Body Dementia is probably not your typical dementia victim, because he has refused to let people forget him. He calls them up if he knows their number. He hunts them down if he doesn’t know their number. He calls them again if they don’t answer the first, second, or third time he calls. He checks up on them even if they don’t check up on him. He remembers what they’ve talked about. These people are his past business associates, the members of the band he used to play in, and family members.

Many times I’ve listened to the conversations (he is always in the living room and doesn’t try to keep them private). Sometimes I cringe when I hear him repeating the same story to someone who has heard it all before. Sometimes I feel sorry for the person he calls because he talks so slowly and often has trouble hearing. Sometimes I wish he wouldn’t try to sound like an authority about other people’s problems, or misquote things he’s read, or be so simplistic about things I think are much more complex. But at the end of it all, I see that there are those people who do take his calls anyway. There are some who listen to his stories, even if somewhat impatiently, and respond with interest. Some tell him that he has encouraged them, given them hope. They are his telephone tribe.

I hear patience in their voices when they talk to him, laugh with him, ask him questions. When they don’t have time for his hour long versions, they tell him they need to go in a few minutes. They set limits in kind ways and show respect. They call him back when they say they will or apologize if they forget. They continue being good friends. They know they are doing something for him that friendship is supposed to do, and they are not afraid, not too busy, not “turned off” by the changes dementia has brought to him. I am so thankful for those friends, because they also help me. I am thankful to have married a man who chose his friends wisely. If you are this kind of friend, thank you.

A to Z Challenge: Letter U for Unusual Behavior

April 24, 2020 Shirleyjdietz4 Comments

Dementia does a number on the brain, creating unusual thoughts and behaviors. It helps to know ahead of time what these can be. As a caregiver of my husband who has Lewy Body Dementia, I have joined a couple online support groups. I have learned more from them and from a couple of books than I have from any of our doctors. Doctors don’t have the time to educate patients about complex possibilities that may or may not happen to them.

Hallucinations

Often one of the early symptoms of LBD is hallucination. Interestingly, the things people see are usually not scary. They see small animals, children, or people who just sit and look at them. What they see is very real and vivid to them and they may or may not be aware that the visions aren’t really there. The advice I hear most often is that it can make the person anxious if the caregiver tries to argue them out of what they think they see. It is best to acknowledge that they see something, and then distract them.

I heard an interesting possible explanation of this at an LBD conference given by Mayo Clinic. It’s like a filter is missing or damaged in the LBD brain. The missing filter results in their dreams being very real and acted out when they are asleep (REM sleep disorder) and also allows dreams to sneak through when they are awake as hallucinations. I may not have explained the connection accurately, but there may be a connection between the two conditions of REM sleep disorder and hallucination – fascinating.

Hallucinations can also occur in the later stages of Parkinson’s Disease. My aunt has mentioned that she sees animals (cat, rabbit, etc…) once in a while but she knows they are hallucinations. It’s still distressing to her. The husband has not had hallucinations, or has not told me about them if he has…

Delusions

These are beliefs or impressions that are not rational. Last summer the husband had delusions about electricity causing some of his symptoms. We went to surprising lengths to dispel his theories, which were many. (Read a bit about that here.) Nothing worked and he thought he would die quickly (and it would be my fault if I didn’t explore all possible remedies). Fortunately, that period passed and has not returned. I am grateful.

Delusions can be very distressing to all concerned, and as with hallucinations, it doesn’t work well to try to point out that the person is delusional.

Capgras Syndrome

It’s sometimes called “imposter syndrome”. People in the support groups have such stories about this. Usually the person with dementia is sure that their caregiver, or someone close to them who they recognize, has been replaced by an imposter who looks just like them. Often the caregiver deals with it by leaving the room and coming back as themselves. They report that they got rid of the imposter. It doesn’t always work. There are a lot of strange variations to this one. So blessed the husband does not have this problem!

“Show Time”

Another common occurrence. At home there can be all kinds of problems and complaints, misbehavior, and general trouble which the caregiver has to deal with and tells others about. But when the others, usually family members or doctors, are present the person with dementia goes to great lengths to be normal. They put on a pretty effective act. Of course this causes others to doubt the caregiver’s word and that is frustrating. Not being believed sometimes means not getting the help the caregiver needs. We don’t have this problem either, thankfully.

Sundowning

I’ve mentioned this before, in my R post about rest. Some of the most desperate caregivers are those who have not been able to get their patient/loved one to go to sleep for numerous nights in a row. Of course they are exhausted. They have to be hyper vigilant that their person doesn’t leave the house (think special locks on the doors), try to drive the car (without a license) or make some unthinkable mess doing something they shouldn’t be doing. We don’t have to deal with this problem either.

My husband and I are noticing that he has been greatly improved since our bad month last summer. He has been given hope that his dementia can be reversed, largely through lifestyle changes and diet. We also pray and believe that God can heal. Something seems to be working and we are thankful for every good day.

The New Normal (Our Life with LBD)

November 5, 2018November 5, 2018 Shirleyjdietz5 Comments

I don’t really know if it can be called normal. Normal seems to mean that something stays the same over a period of time, long enough that you can grow used to it. We can’t seem to grow used to things that are changing all the time as we deal with the husband’s problems. “Normal” has come to mean regular frustration as he deals with less of almost everything he needs in every situation.

It snowed yesterday and was wet, slushy and slippery everywhere we went. The husband’s shoes were getting wet and were clearly not what he would need for winter, so today we shopped for boots. This is something we both remember him doing by himself, but since he no longer drives, I am with him everywhere he goes.

The first thing we had to do in the shoe department was find a place to sit down. Dennis can’t walk very far or stand very long without getting tired, and he always has to sit to put on his shoes. We struggled. Putting on boots can be such hard work. I fetched pair after pair from the shelves, opened them up and pulled and pushed until he could get his foot down inside. Each time he had to stand and test out the feel of the boot. Up and down, over and over. He was worried about the small bench he was on as it would start to tip as he pushed himself up. We finally found a pair. I think he would have liked to go home at that point, but he had also wanted to get a new watch.

After pointing him in the direction of the jewelry counter, I thought, briefly, that I would let him look over the options and choose. But no, I decided it would be easier if I helped him so we went together. His vision is one area where “less” keeps happening. In order to see the time he decided the face of the watch had to be white, with dark hands and numbers that were easy to read. No shiny reflective surfaces would be suitable. The band had to be easy to close. He would have liked one that showed the date, but finally decided that he would do without since he couldn’t read those small letters anyway. It didn’t take us very long to pick one out but by then he was really tired. He went to the pharmacy where they have benches, and sat waiting while I got a few groceries.

And we are getting very good at finding restrooms in all the places we go. This was Walmart and he had to walk to the far end of the store for that before we could leave. He walks very carefully, and very slowly.

Often we think of dementia as robbing a person of their memory first. That is not a given with Lewy body dementia. Right now some of the husband’s most frustrating symptoms are motor related. He has less strength, less balance, less flexibility, less stamina. He will tell you that he is also forgetful but I find that he can make himself remember most anything he wants to, given enough time. He may get overwhelmed with thinking too hard, but he still thinks correctly. He remembers. And that is what is hard – remembering what he used to be able to do, but no longer can.

My Elephant

October 16, 2018October 16, 2018 Shirleyjdietz4 Comments

Part of my problem as a writer is that I often feel like a minor player in someone else’s drama. Even if they don’t write their own story, I feel like I’m stealing if I write about it.

In searching for reasons why he was diagnosed with Lew Body Dementia just weeks after his retirement, the husband has wondered if he is supposed to share his experience with others. Could it be he is meant to encourage others in some way, even though he is pretty sick about this whole thing? He actually says he might start a blog, or write stuff down as he thinks of it. For several reasons, I think the chances of him writing anything are slim.

For one, he has a history of brilliant ideas that never see action. I don’t see his diagnosis changing that.

Reason two – he doesn’t have experience expressing feelings. He has them, but they don’t usually bother him or beg to be shared. He would like to share things now, but they end up coming out in long, convoluted histories of his life journey accompanied by tears, and a tone of desperation and sadness. He’s doing it a little better now, but the first couple of weeks were tough and any compassionate person who had time to listen patiently ended up crying with him and giving him a hug.

Reason three is simply that writing is work and work isn’t something he’s looking for. Too much mental work makes his head spin.

It’s true that my story has a lot to do with his story but, of course, I tell it from a very different perspective. He reads what I write. I wonder if I will be able to write what I really think or will I change the narrative because of the effect it might have on him?

Interestingly, the two things that have helped the husband and I know each other better in the last few years are our “together” prayers and my blog/journal. I guess in each instance I tend to be more open, truthful and informative. In each instance he feels less threatened by my words because they aren’t spoken to him – they are conversations with God or my readers. He listens better. And the same goes for him when it comes to telling God his thoughts and concerns – one might as well be honest. I learn things about him that he doesn’t think to tell me.

It certainly isn’t that I don’t want him to write his own story, from his own perspective. I do. But not writing about this part of my own life has been hard. The vague feeling that I couldn’t write about this big thing happening to us, has made me not write much at all. Somehow, when there is “an elephant” in the room, so to speak, writing about anything else takes second place to wondering about the elephant and what it’s going to do next.

That elephant is on my mind most all the time. I might as well write about it. Probably have to. Just sayin’…

Mayo Clinic: A Diagnosis

September 15, 2018September 15, 2018 Shirleyjdietz14 Comments

We’re thinking it over.

We’ve had a little over 24 hours now to sit with the weight of the doctor’s words, process them, test how our involuntary reactions are stacking up. He didn’t tell us what we wanted to hear most – that the husband’s problems could be fixed with surgery. It wasn’t NPH, normal pressure hydrocephalus. It was, or is, a form of dementia called Lewy Body Dementia.

I won’t go into the details of the condition. You can find it in Wikipedia or by putting it in the Google search bar or by clicking this Lewy Body Dementia . It’s not high on the public awareness scale but it is the second most common form of dementia, right behind Alzheimer’s. It is progressive. Everything has an acronym, so LBD is what it’s called. There is research, there are educational resources, there are support groups, but no cure as of yet.

The doctor spent time explaining thoroughly how he arrived at the diagnosis. He told us exactly how he wanted to treat the symptoms and what things should be done as far as lifestyle changes. We were already doing many of them so life will not change greatly for us. There are a couple new medications, and a few new cautions. Not much is different except now we know.

We are going to be okay. The husband is okay. He likes telling people it hasn’t affected his sense of humor at all and I always agree – it is as bad as it always has been. He is still very much himself, as most of you know. At Mayo, he did quite well on his cognitive tests, and he will discuss complex things at times and have no trouble at all. I would say that he is more emotional, more compassionate and understanding of others, more grateful and aware than in the past, simply because life has given him a jolt that enables him to see pain and struggles in the lives of those around him. I think he feels held and loved by God more because he needs it more.

He is looking for any way that God might be able to use him. You know how men are (well, a lot of them anyway), they want to feel useful and not dependent. He wants to share his story and encourage others. He wants to call himself the Demented Disciple (not my idea). We’ll see how that works out. It is however, going to be an experience that we go through together as a family so I know I will have to write about it as a caregiver in order to stay mentally, emotionally and spiritually healthy. I don’t think it’s going to be easy.

I missed a day in my September blogging challenge, but since I’m making my own rules I’m going to ignore that. The tests yesterday at Mayo were interesting. I may write more about them when I feel more in the mood to inform. The ride home was pleasant and we were glad to get to Hayward around 9 pm.

That’s it for tonight.