Tag: Lewy Body Dementia

The Last Day (of 2022)

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My “second brain” planner

Most every year, during the month of December, I carry two planners around with me. One is for the present year, and one is for the year to come because I am often planning ahead. That’s what planners are for. The last day of December often finds me closing out one and looking back over the fading year. I am doing that today.

The first half of the year was filled with quiet routine. The husband was housebound except for a few rides in the car and a restaurant meal now and then. We had a regular habit of reading in the mornings and sharing thoughts on what we’d read. Evenings often included him getting a wheelchair ride around the community.

I enjoyed the seasons – skiing in the winter, gardening in the spring and, most of all, planning for our August family reunion.

While family was arriving in late July, the husband had a stroke. Before that time I often wondered how his diagnosis of Lewy Body dementia would play out. He was obviously experiencing symptom progression but so slowly. I thought he was dependent on me in some ways, but little did I realize that being able to walk at all, and being able to eat are very independent activities. He was still doing those things at will, and amusing himself during the day with tv, phone calls, and books.

The stroke took all of that away. What followed was 25 days in ICU, 5 days in a step down unit, 49 days in acute care rehab hospital, 26 days in skilled care rehab, and 24 days in a nursing home. I’ve been sitting here with my planner counting up the days and marking the events. Most of these places were 90 minutes away from home. The last was only half an hour away. I’ve put thousands of miles on the car. I was weary of traveling and welcomed bringing him home. This is his 29th day at home, the 17th day under hospice care.

I am the primary caregiver, although we do have around 15 hours of care each week from CNAs hired privately. That is the summary of the second half of 2022 for the husband and me. It’s been a year to remember.

I can’t say that I have felt like writing much during this time. Occasionally it has been an emotional release. I might also like to have record of what we have gone through, at some later date when memory fails me. But much of it I would like to forget. Ten years ago I would not have imagined living the life I have now.

Should I say something about God and his part in the road we’re on? I see him as having been very patient and understanding of my fatigue, my not want to think deeply, or pray consistently, or immerse myself in scripture every day. In some ways I am numb to those disciplines in much the same way as a young mother with a house full of toddlers. God sees what overwhelms his humans. He sends me out on a “walk and talk” and I will tell you that the natural world has been my lifeline this year.

Lots of privacy out here and a real sense of who I am praying to as I walk. No denying he has a sense of beauty.

He sits with me when I cry. He gives me words for the husband when calming and encouragement is needed. When action is called for he has given me the thought of what must be done and the energy to do it. He has given me assurance about all the confusing and uncertain things – that I can trust him and decide not to fear, not to blame.

Many friends have said they are praying for us, and have reminded me of that often. That has weight with me. This is not the first time that prayer has been important to me, but still it is a mystery how God uses it. I want to be involved in that mystery, not necessarily to understand it, but just to have a part in it. Somehow God attaches great power to prayer and I love to see him be powerful , up close and personal.

I think it was good that we asked God for healing for Dennis. Why would we not? But it is also okay that he has not been healed because perfect health is not the only blessing God can bring with a hard experience. And we have always known that we will die at some time – it’s just the end part of being human. We will not waste the experience by becoming bitter or turning away from the most exciting relationship humanity has ever been offered. No, neither Dennis nor I feel any disappointment with God, or the way he has exhibited his friendship with us.

He has been “with” us. Sometimes he has been a peaceful presence on my walks. Sometimes he has sent others to us to spend time or offer help. I’m often told that I’m not alone and have felt like saying “Well, I feel pretty alone in spite of what you say.” But now I receive that differently. God puts that sentiment on the lips of others to remind me that he is with me, even when people are not. That’s enough. He is not named “Immanuel” for no reason.

Telephone Tribe

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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.

Good Things in February: Kindness

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An interesting thing at the end of this first day of February – a relief, and a miracle of sorts.

The husband has a condition, Lewy Body Dementia, which wreaks havoc with his autonomic nervous system, among other things. This is the system that controls blood pressure, and it shows up as giving him unstable pressures from time to time. He has been on medication, but even that is trial and error in keeping him stable. So we check it fairly often.

This morning I found his medication from the night before. He had missed taking it with his other pills and it was still in the container. Sure enough, his pressure was on the high side, so he took a diuretic in addition to his morning medication. Late this afternoon I asked him to check his pressure again and he got this:

A scary blood pressure reading, 197/116, yikes!

For those who might not have had to know anything about blood pressure, the top number is the pressure in the system when the strongest part of the heart, the ventricle, is squeezing. The bottom number is supposed to be the pressure when the heart is “resting” in between beats. The top number is ideally below 120 and the bottom number should be less than 80. The husband’s reading of 197/116 – not so good. I blinked a bit, held my breath and tried to get my plan in mind in case he stroked out. He’s had this happen before, but knowing that it changes quickly, I’m not one to speed him to the ER.

We prayed. I told God we would check Dennis’s pressure again in a few minutes and asked him to please let us know whether to stay home or get help. I gave him another diuretic, hoping it wouldn’t keep him up all night going to the bathroom.

About 15 minutes later, after we had finished eating dinner, his pressure was 128/84. His medications had not had time to work yet so we either had faulty equipment or a miraculous change. The equipment checked out okay. I have no trouble believing that I was spared spending an evening in the hospital, even spared the decision of whether or not to go. That’s really the hardest part of my caretaking role, deciding if it’s time.

There were other good things in this day, but this was probably the most dramatic. I’m happy to share it because it wouldn’t be right not to give God thanks for doing me a favor. And I would encourage anyone – don’t be afraid to ask him for things like this because he really is kind. Just sayin’…

Back to watching his phone. Not a worrier, that one.

A to Z Challenge: Letter V for Vagus Nerve

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I wrote many of my A to Z posts back in March when coronovirus topics were just ramping up. Since then I have begun to weary of anything virus related, and so for my own comfort I am trashing my previous topic “Virus” and opting instead for something I care more about “Vagus nerve”. How odd, you may think, but I am okay with you thinking that.

This has nothing to do with my post. I had a hard time finding pictures of the vagus nerve so instead you’re seeing this favorite barn picture that I’ve wanted to post for a long time. Like it? (It’s so wonderful to have my own blog where I can do whatever I want. )

Caregiving for people with dementia is one of the hardest and most frustrating roles. It is only going to involve more people as time goes on. Here is your daily dose of statistics:

– 5% of people over 65 have dementia

– 20% of people over 80 have dementia

– 60% of those having dementia have Alzheimer’s

– 20% of those with dementia have Lewy Body Dementia

So you can see that a sizeable number of people are going to be affected both as victims of dementia and as caregivers. It’s pretty important that general knowledge about these conditions increases and that is part of my aim in sharing my caregiving life.

Research is bringing much to light about how dementia develops, its causes, and its treatment. I am amazed in particular at the early signs and symptoms that are often not recognized as such. How much could be avoided if we knew early on what our bodies were trying to tell us.

So, what about the vagus nerve, you are probably wondering? This summary article (click here) gives a good overview of this most important nerve in our bodies. It’s divided into right and left to serve different sides of the body, but spoken of as one. It is the longest nerve in the autonomic nervous system and the major parasympathetic influencer. It regulates heart rate, blood pressure, sweating, digestion, and even the mechanism of speaking. That’s a lot of essential stuff. It is the 10th cranial nerve. It starts up there where all the dementia problems start.

If there were definitive tests for dementia, ones that could detect it early, before it had devastated cognitive areas of the brain, how great would that be? We would be more concerned about chronic constipation, hard to control blood pressure, low heart rates in non athletic persons and other symptoms that get tossed into the “old age” bucket and treated with a pill.

The husband had all these problems years before his cognitive symptoms, the ones that got his attention, began. I remember the many blood pressure medications that he went through, and the multiple times he would react to them in extreme ways. He would have drops in pressure that would leave him dizzy and weak, and spikes that would alarm us. This continues now and is one of the fluctuations I’ve come to expect from LBD.

And I don’t know what his heart rate does to him but I know that having 50 or less beats per minute would make me feel strange. He tires so easily and complains of dizziness on a regular basis.

I’m not into writing about other people’s digestion or bowel habits but don’t we all know what problems can arise in these areas?!! Think honestly. There’s also the difficulty that dementia victims have in swallowing and speaking that results from impairment of the vagus nerve. There are days when my husband knows that it feels hard to swallow and he needs to be extra cautious about what he eats and how fast he eats it. I notice his weak voice and how some days it will be unexplainably stronger, making him sound like his old, normal self again.

Research is showing that up there in the brain where it all gets important is where we find protein deposits, call them plaque, Lewy bodies, or whatever. The vagus nerve is commonly affected and is responsible for many early signs.

What I say to myself about all this, and what I say to readers is that you can change what is happening in your body by lifestyle changes – simple things that take will power and determination but cost little and mean a lot over time. We cannot rely on pharmaceuticals to come up with remedies because it is not in their business interests, and they are businesses. We are people and we must investigate and do what is in our own best interest, whenever we can. We are the guardians of our own bodies. When we choose stress, poor diet, lack of sleep, and a multitude of other poor choices, we get the bad things that come with those choices. It can be sad.

Aren’t you glad I didn’t write about ventilators?

A to Z Challenge: Letter U for Unusual Behavior

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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.

We were having fun.
The husband and I acting demented.

A to Z Challenge: Letter P for Parkinsonisms

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The logical P word for caregiving would have been “patience”, and it’s true that you need that, but there’s not much more to say about it, except that it requires some understanding. So here is another “p” word that we have been dealing with at home that makes patience more important.

Parkinsonism

It’s an umbrella term for a group of neurological symptoms that can have different causes. It’s not the same as Parkinson’s Disease (PD) but people who have PD have most of these symptoms. So do many people with Lewy Body Dementia (LBD), and there are over a dozen other conditions which cause parkinsonisms. The husband has a few of these symptoms and they are the most discouraging for him because they are so visible and he doesn’t see them improving much with his therapy. They are all movement problems. Here they are:

• Altered gait

• Tremor at rest

• Slowness

• Stiffness

• Balance problems

My aunt, who has Parkinson’s Disease, has all these movement problems as well. They are caused by a lack of a neurotransmitter called dopamine. She is able to take a drug called Levodopa to replace the dopamine and it does lessen her difficulties. But drugs like this can increase other undesirable symptoms, like hallucinations, in Lewy Body Dementia, so it hasn’t been recommended for the husband.

These parkinsonisms were some of the earliest symptoms that caught our attention several years ago. I could hear my husband walking around the house long before I could see him. He would shuffle, not lifting his feet, and take tiny steps. We teased him for walking like a pregnant lady.

Another characteristic of his walk is that he doesn’t swing his arms at all. There is a noticeable rigidity. And last week, for the first time, he mentioned that he got walking and was leaning forward and felt that he might not be able to stop easily. These are typical parkinsonian characteristics.

We used to walk often in a nearby mobile home park in Florida. That was before the difficulties began.

Last year, he had several falls and became wary of cracks in sidewalks, door jambs, stairs and any kind of uneven ground. He didn’t like to walk on the lawn, or in the woods anymore. The slightest bump or dip made him feel unbalanced.

Getting in and out of chairs became more difficult. He and my aunt used to have conversations about how the day was going and how many tries before they were able to stand up from their recliners. Now it amazes me how long it takes him to get in and out of vehicles, or even to sit down at the dining table.

And the tremor. It started in his right hand, and commonly it is one side that is affected first. I think it scared him because it started last summer and that was when he was sure stray electricity in the house was causing it. He was aware something was happening but wasn’t sure why. He is able to quiet the tremor with conscious effort or with meaningful movement, but at rest, when he’s not thinking about it specifically, his hand is always shaking. It has begun in his left hand as well.

Parkinsonisms affect how we as caregivers look at our loved one or client. They make them appear older and feeble which is distressing to them and to us. They also make the word “patience” a necessary skill as we learn to wait, to empathize, and to assist when necessary.

A to Z Challenge: Two N Words

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Many of the people we care for are elderly or have dementia. Here are two conditions that they may have that I’ve become aware of in my caregiving role. Read this post and you will feel smart about a couple of obscure things.

Neuroleptic Malignant Syndrome

On the day my husband got his diagnosis of Lewy Body Dementia, the doctor made sure that we added Haldol, an antipsychotic drug, to the list of his allergies. It wasn’t that he had ever had a reaction to Haldol or even that he had ever taken it. The recommendation to avoid this drug was so strong that one of the handouts given to us was a wallet card to warn medical personnel and a order card for a medic alert bracelet. We got one.

I remember quite a few times in my nursing career when we would get a patient who was agitated, maybe even combative and unable to behave. Haldol was frequently the drug that was given to calm the patient and protect them from harming themselves (and us). As a caregiver you may find that your family member with dementia has times of extreme agitation and acting out. They may even run away or get lost. If they are taken to the ER or urgent care, Haldol might mistakenly be given to them. Many people can safely take Haldol, but having Lewy Body dementia in particular puts them at high risk for neuroleptic malignant syndrome – what a mouthful of scary sounding words!

This condition can be fatal, but is treatable if recognized early before muscle or organ damage takes place. Its primary symptoms are a high fever and muscle stiffness. These may start a few days or a few weeks after the drug is started, and is more likely with high doses. Part of the treatment is, of course, to stop taking the drug. There are newer, safer antipsychotics that should be used for people with LBD, like Seroquel.

Neuropathy

My simplified definition of neuropathy is a condition when nerves, usually in the arms, hands, legs or feet, don’t work right. It feels like numbness or weakness. Nerves can be damaged by so many different things – trauma, chemotherapy, radiation treatments, poor circulation, even bad posture.

My Mom is not sure what caused her neuropathy, but it may have been made worse by radiation treatments she had for cancer. As a result, her feet and legs have a partial numbness that makes it hard for her to feel stable when walking. It’s an unsettling feeling and causes her to be less mobile.

Mom’s feet feel so strange to her that she goes barefoot most of the time, even outside. When she has to, she wears simple, slip-ons like this, and for as short a time as possible.

Neuropathy can also make hands or feet more sensitive to pressure and cause feelings of pain or burning. It’s not fun, and most of the time those nerves do not regain proper function. There is extra risk with neuropathy that injury can occur without the person feeling it or, in my Mom’s case, a fall due to loss of balance.

If you are caregiver for someone with neuropathy, be watchful and aware of the problems this disability presents for them.

A to Z Challenge: Letter A for Acceptance

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Ever since “sheltering in place” and “social distancing” became the norm, writing has become difficult, more like work I can’t concentrate on. I’ve been worried that this year’s A to Z challenge would be hard, maybe unsuccessful, and probably not fun. Rather than give up, I will possibly write things that are a bit strange, just to make the 26 days easier, and maybe more fun. Fun is good and worth pursuing.

Way back in the dark ages I got married and left behind a good life and a good friend, my mom. We’ve remained close, but I’ve always told myself that I wanted more time, daily time, to renew that relationship and do life together again. When my dad died a few years ago and mom was alone, I started to think that it might be time. She was starting to want help in small ways, and I knew I wanted to be there, to give whatever care was needed in the future.

Mom and I

Meanwhile my husband, who thought he would work at his desk until the day he died, started not enjoying work as much as before. He struggled with some physical problems. He lacked energy and motivation. Retirement started looking good to him.

It took a long year of planning and hard work but in July of 2018, the retirement happened, our house in Florida was emptied and ready to sell, and we moved to Wisconsin to be near mom. A couple months later my husband was diagnosed with Lewy Body Dementia, which changed our lives significantly. I was suddenly thankful to be in a simpler living situation, near a supportive family group. Caregiving life had started.

The husband and I

Accepting caregiving as part of my life, something I chose to do, not a lifestyle forced on me, was key in helping me to be a satisfied, basically happy caregiver. Maybe it wasn’t as hard for me as for some because I had already been a parent (the ultimate caregiving opportunity) and chosen nursing for a good part of my working life.

Nevertheless, one of the most confusing things about caregiving has been the temptation to feel like my life has been “taken over” by the needs of someone else. I’m working at a job that, at times, feels like I have no choice. I’m trapped and have to do it. If I rebel, guilt can start to dictate to me. Nagging voices try to tell me what I “should be doing” if I’m a good mother/wife/daughter/family member. My thinking gets filled with those limiting words; trapped, forced, should do, have to, guilt.

But the truth is that I have a choice of how to respond to people in need. I could choose not to be a caregiver. There are options these days and not everyone is able to offer the same kind of caring. What I do know is that if I feel like a martyr, I won’t be as effective in the care I give and I also won’t be fun to be around. It can get toxic.

I believe there is a realistic way to look at the limitations of caregiving. Being married has limitations when compared to being single. Having children has limitations when compared to not having children. Some jobs are limiting when compared to other jobs. So it is with caregiving. There are days when I am tempted to think of fun things I could be doing, other than taking care of someone else. But, thinking about all those other options will probably rob me of opportunity to find value and fun in what I’ve chosen to do.

Caregiving, as a choice, has it’s hard times just like any other path, but IT IS MY LIFE. I’m accepting my choice. Instead of holding others responsible for my happiness, I’m going to use that energy to make this life as good as it can be. Acceptance makes that so much easier.

Am I alone here? When have you found yourself in a time consuming caregiving role? What limits were especially hard for you to accept? Can you tell me about it? Would you have moved NORTH for retirement?!

Forty-Seven

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I am so glad I went through the exercise of writing this “sequel”. Anniversaries are for reminding us of truths that keep us going, just sayin…

Five years ago, on January 11, 2015, I sat writing as I am now, on the same subject – the anniversary coming up in a couple days. I took a picture of my diamond and thought about all it meant to me, being married for forty-two years.

The ring looks a lot different now. Since it no longer fit me, I had the diamond reset. My preference changed to white gold somewhere in the last thirty years, and I worried about the prongs wearing off and losing the stone. The price of the gold in the old ring wasn’t enough to pay for the new one, so it cost me. I could only afford to replace the engagement ring with the stone in a secure beveled setting, but it was good to be able to wear it again.

The new setting suits me. It is plain, safe. It doesn’t collect garden dirt or catch on my sweaters. It fits, although I don’t know for how long. My hands keep… growing.

Life has changed. We are changing with it. It’s been a little over a year ago that my husband got his diagnosis of Lewy Body Dementia. That day wasn’t when the problem started but it did mark the change in his focus. How does one think about anything else when faced with a prognosis like that? His world has gotten smaller in so many ways, limited in large part by his dependence on me. Today, at home, he was relatively quiet while we ate a meal with some friends and listened to a sermon on the internet. He spent most of the day in his recliner in the corner of the living room, looking very tired. He asked me once what I was doing. He went to bed early.

It means a lot to me that he is not ungrateful. He is not a big complainer. He puts up with me dusting him off all the time and fixing his clothing. He eats what I fix for meals and tells me when it is good. He willingly follows my suggestions. He sits still while I trim his beard. He doesn’t get mad when I easily do the things that are hard for him. He doesn’t criticize my decisions about money, or schedules. He is still here, a sweet person, a nice guy, thinking, trying to manage his daily existence as much as he can. But there is very little that he can contribute to us, to our marriage, to our future. His executive functioning is not working well.

Most of the time, I cannot imagine what he thinks about. I even have trouble describing my own feelings about what has happened to us. For our anniversary, should I not be able to put words to what’s meaningful for us?

It is for times like this that we make promises to each other. Our marriage vows had the old-fashioned words “in sickness and in health, till death parts us”. We had no idea who would be sick, no one does, usually. Few have the ability to think about what that means when the excitement of marriage and all it entails is new. But now, forty-seven years later, the promises have become meaningful. It means that we own these new circumstances together.

Now it makes sense to me what covenant marriage is. There were three of us making promises on the day Dennis and I married. God, who heard my promises, now helps me to keep them. God, who knows all about grief, loss, dread, panic, and everything else I experience finds ways to support me. He assures me that promises kept will be worth it, and that growing in personal integrity will be satisfying and rewarding. Our days now are part of something bigger, better and soon coming (relatively speaking). They are not the end!

So, on Tuesday the 14th, I will remind the husband that he is not alone. I am keeping him company as long as I am able, and I’m going to do my best to keep life from being dull (I guess he kind of does that for me too…) There are gifts all around us that we can point out to each other – maybe that’s how we’ll spend our “Happy Anniversary”.

The New Normal (Our Life with LBD)

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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.

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We got the boots.