Tag: dementia

Telephone Tribe

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: X for Exasperated

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(Ex is how you spell X, so this counts.)

Today I am exasperated. It’s a degree of frustration right before one’s head explodes. It happens fairly often in my caregiving world, particularly with my husband.

It’s not that this never happened before, when he was well. We were a fairly normal couple and we had our ways of getting past the rough times and keeping peace. We were both responsible and expected to act like mentally competent adults. Now, as with any situation where a spouse has a mental deficiency of any kind, doubt enters the picture and roles may change.

Many days I am so conscious of having to watch over our world, unaided, while my husband (my patient, is what it feels like) does what he can do, sits and watches TV or looks at his phone. When he wants to talk to me about his angst over politics or his ideas of how to conquer coronavirus, I want no part of it. I want him to do some meaningful task that would help get chores done. I want him to show concern about finances or make a “to do” list like I have to do most days. It exasperates me to have a live-in patient instead of a husband.

And at the same time I begin to feel very guilty for being angry. I am not the only one missing out on our retirement plans. He is sick and I am well, at least for the moment.

For these reasons, caregiving for a spouse, or a live-in family member is not easy emotionally. It usually starts out being a 24/7, 365 days a week job, until burn out sets in, so it’s not easy physically either. I need support and this is how I get it.

1. I have identified people that I can talk to safely, even when frustrated – ones that are regularly available to me and don’t mind if I vent.

My physically present support group that I could not do without.

2. I have joined a couple online support groups. They understand what it’s like and have encouragement/advice for all situations. They always show me I’m not alone in the way I feel.

  • Facebook group: Lewy Body Dementia Carter’s
  • Facebook group: LBDA Care Partner Support Group

3. I have a place I can go, in the house, to get away to watch a movie or read a book while the husband is occupied or napping. It’s a true multi-function “she room”.

4. I haven’t had to do this, but if needed I would hire help to cook or clean, or just be in the house for a few hours while I escape.

5. I try to spend time with my husband doing something we both can enjoy (like reading a good book) to give attention and alleviate guilt (mine).

6. I give myself grace to not be perfect, but to try again to do a good job and to love well.

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 T for Touch

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There is a magic in caring touch.

I guess it’s “old school” now, but when I was a new nurse, patients were put to bed at night with a brief back massage, if they wanted it. It did more good than sleeping pills to comfort and relax. I’ve always found this amazing, and have never forgotten how powerful it can be.

Our culture bombards us with so much erotic touch that we sometimes forget there is any other kind. Everyone, regardless of age or gender needs touch for physical and emotional well being. You hear of therapeutic touch in the neonatal ICU when family members are encouraged to come in and hold infants at risk. There are touch techniques that calm anxiety and panic. The elderly who are alone, without family, may never get touched by anyone. Our skin has nerve endings everywhere and we are in better health if these nerves are stimulated in a comforting way. Therapeutic touch can point out where we are hiding our tension, pain and stiffness, and make those entities lessen, even disappear.

I recently had a cast taken off my left hand and the occupational therapist massaged the surgical scar beneath it. I’m not used to being disabled in any way so this focused attention to touching my hand and arm felt a little weird, but really good. I learned to self massage, but it’s not quite the same as having someone else do it. Therapeutic touch leaves me sure that, at least for that moment, I am the center of someone’s attention. How often do we get that feeling? One of the reasons medical massage is so popular these days is that it meets those emotional and physical needs.

If you are a caretaker, think about those times when you might be able to use therapeutic touch for the benefit of your client or loved one. It might take a while to build confidence if this is not your custom, but you may find that something as simple as a hug, a hand on the shoulder, or a pat on the back can do wonders.

Teepa Snow gives an interesting demonstration of how to calm an anxious dementia patient by using therapeutic touch. I haven’t had to use this yet but I’m tempted to try it on the next anxious person I meet, dementia or not. Check it out.

Click here for video demonstration.

A to Z Challenge: Letter H for Hygiene

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Good hygiene is important and needs to be addressed. I started thinking about this back on letter B when talking about bodily care and the work involved in having good hygiene. But there is an additional issue or problem that I have noticed with almost every person I’ve helped. It’s not just having good hygiene, it’s convincing them that they need to have it.

All that showering, brushing and grooming is work and people often don’t care. Some are vehemently opposed. Who would think? But those basics of hygiene, if built into a routine, will keep your person healthier, and prevent problems. You can keep them simple.

For instance, elderly people don’t need to shower every day, or even every other day. They aren’t working up a sweat usually, they aren’t playing in the dirt (are they?). Their naturally drier skin doesn’t need frequent soaping, and as Mom’s doctor tells her, soap is only needed on the places that smell. I’ll let you figure out which four places those are.

Sadly, people with dementia often don’t remember those routines that they have followed all their life. As a caretaker, you become a coach – helping them know when something is needed and what the steps are in accomplishing it. Something as basic as toileting can be suddenly confusing. Accidents can occur simply because they don’t remember what to do first, second, third, etc…

My aunt would sometimes stand at the bathroom counter and ask me “why am I in here?” I would remind her “You are here to brush your teeth. Take that brush and I’ll help you put toothpaste on it.” It’s much easier for me to be patient and helpful when I know there is a real reason for the forgetfulness.

I also don’t like to ask my elders to make too many decisions. I suggest as though it has already been decided. If it needs to be done, I don’t ask them if they want to do it.

“It’s been a few days since you showered. Let’s get it done today.”

“Something got spilled on your shirt. Here’s a clean one to put on.”

“Here’s a washcloth so you can clean your face.”

I like to give grace to the elderly and others who aren’t perfectly groomed because I know that some things are superficial and not worth mentioning if it will embarrass them. That is, if I am not their caregiver. If I am their caregiver I have to help them avoid embarrassment by telling them what they would want to know.

This was hard for me at first, but I got over it. If I know the husband can’t see well and wouldn’t want to go out with spaghetti sauce in his mustache, I need to tell him it’s there. If my uncle has two inch long eyebrow hair, I need to offer to trim for him. (I mean, if it’s on purpose, he can still say no…).

You might think you can’t wash and set a woman’s hair, or shave a man’s face but any caretaker can learn those things to some degree. Even if they aren’t done perfectly, it’s better than not having them done at all. Even if they protest at first, most people are ultimately thankful for the care.

Don’t we all want to be?

My Elephant

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.

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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’…

#AtoZChallenge: My Favorite Things Z

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Zzzzzz’s (okay, sleep)

I used to think that missing sleep was not a big deal, if I could make it through the next day all right. I’m learning differently, and it’s a little scary.

A good sleep pattern, something that’s habitual, can make the difference between being healthy and active or falling prey to (are you ready for this?) brain fog, memory loss, diabetes, obesity, cardiovascular disease, cancer, depression and Alzheimer’s disease. Prolonged poor sleep habits are a factor in all of those things THAT YOU DON’T WANT!

I’m especially concerned about my brain as I age, specifically I want to avoid dementia of all kinds. Good sleep enables the brain to clear out damaging proteins and carry out several other physiological chores that cut inflammation and bolster the immune system. Sleep apnea,  a common condition these days, has been shown to be a factor in the cognitive impairment that can precede Alzheimer’s disease. I’m not saying that my husband is cognitively impaired yet but he says he’s worried that he is.  What I hear, a few minutes after he falls asleep, is snoring. After he is fully relaxed his airway closes and he doesn’t breathe for a much longer time than normal – which rouses him suddenly just enough to start the cycle over again. Neither one of us sleeps very well through this.

The good news is that he has finally gotten around to visiting a sleep specialist for his sleep problem. Yay! I have been telling him that it could be causing some of his other complaints, and after getting the explanations from this doctor, he is starting to believe it. He’s eager to get on with his night time sleep study (polysomnogram). There is a whole field of medicine devoted to sleep disorders, and it’s about time since we spend nearly a third of our lives sleeping, or trying to.

Sleep, good sound sleep that leaves me feeling refreshed, is a memory from younger years I’m afraid. I usually look forward to getting off my feet and lying down, but after a few hours of hunting for a position that doesn’t hurt something, somewhere, I’m am looking forward to getting up again.  Tried a “sleep number” bed. It didn’t help. Tried “My Pillow”.  Didn’t help either. I’m defying the odds. But every once in a while I hit the jackpot and get a really good sleep. It is so sweet, and definitely a favorite.

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The kind of ridiculous, good sleep I’m waiting for…

 

I’m addressing my sleep deprivation from several angles, trying lots of lifestyle alterations that help. There’s lots of interesting information out there! How are you sleeping these days?

More Good News

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This is more about my recent excitement after watching a PBS presentation by Dr. Daniel Amen. I don’t know why I had never heard of his research before, since it is not new or hidden. First, look at all these acronyms and think of how many of them have affected you or people you love:

OCD – obsessive compulsive disorder

ADD – attention deficit disorder

PTSD – post traumatic stress disorder

TBI – traumatic brain injury

and then there’s also depression, anxiety, epilepsy, dementia, Alzheimer’s and a whole range of behaviors that we call mental illness and that are becoming common words in our society. The science of mental health was always kind of mysterious to me in nursing school, and since then as well. Sometimes therapies worked, sometimes worked for a short while, sometimes not at all. Medications were so “trial and error” oriented that they were discouraging. Many of them produced side effects worse than the condition they were treating. What I saw had me thinking that having a brain problem was a sad and permanent downhill course. And that is why I am so thankful for this research that shows otherwise.

Dr. Amen is a clinical neuroscientist, a psychiatrist and a brain imaging expert. His research includes over 83,000 of a particular kind of nuclear medicine images called SPECT or (get ready for big words) single photon emission computerized tomography. What this is, according to WebMD, a gamma camera that rotates around the patient taking pictures from many angles which a computer then uses to form a cross sectional image.

When I saw the before and after images of brains having some of the above listed mental health diagnoses and saw visible improvement that correlated with behavior improvement, I became a believer in what he was saying. You need to go look at these images, seriously. He explains it very well in some of his TEDx talks (like this one, click here). A couple of his most important and revolutionizing statements are “When your brain is not right, your relationships won’t be right” and “Change your brain – change your life, and here’s proof”.

I’ve not been diagnosed with a mental health issue. I’ve never been in therapy (although I’ve wished many times to have been) but I’ve had mild concussions, PMS, headaches, periods of anxiety, deep sadness. Who hasn’t? I’ve watched patients with dementia and worried that I would someday struggle with that. I’ve watched friends go through the stages of Alzheimer’s dementia and cried with their families. This is the first time I’ve heard that we can see even these things before they happen and do something about them. We can understand  what’s going on and counter with proven strategies instead of “shooting in the dark”, as Dr. Amen puts it.

(Btw, if you are a parent with a child who plays football, you need to hear about his treatment of professional football players with brain injuries. Even supposedly mild blows to the head create some images that show amazing amounts of damage, but the improvement that can be made is equally amazing.)

So that’s what has me excited. I’m going to watch more of his presentations. A lot of his treatments are related to exercise, good nutrition, good sleep, and good thoughts. In other words, it’s do-able and we should be doing it. Again, just sayin’.

Where Did I Put that List?

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Somewhere I have a list of things I wanted to write about but since I don’t remember where it is, maybe I’ll write about forgetfulness.

You know, I really don’t think it’s early dementia or Alzheimer’s. I think I’m just too lazy to commit every little detail to memory. I put high value on being free to act upon inspiration as soon as it hits.  This means that whatever thought preceded the new idea gets … forgotten, I guess.  I don’t quite understand what happens to it. Most of the time I don’t care either.  If it’s truly important it will come around again. I remember lots of stuff, just not when I’d most like to remember it.

Names? Where did I put my keys? Where is that missing credit card? Why didn’t I remember to record the last six checks I wrote? Is that baby shower tomorrow or next week? Did I close the garage door?  Did I turn off my cell phone ringer?  Did I turn on my cell phone ringer? What was that password? Did I take those clothes out of the washer? (no, they dried in there and that’s why they smell so funny).

The really good thing is that I’m an equal opportunity forgetter.  I forget the bad things as easily as the good things. I can’t remember much childhood angst, any really. I don’t remember details about bad grades in school, losing boyfriends, my several car accidents.  When I’m asked about my most embarrassing moment (and don’t we all get asked about that occasionally?) I’ve memorized one, just one, and only for that purpose. There have been many but I can’t remember them. I think that’s a good thing.

So, do I have a remedy for my forgetfulness? Yes, indeed I do. I don’t tell anyone unless I get caught.

I can have a decent conversation with someone without saying their name. I can look it up after.

Most of the time, if I’m patient, the lost gets found. Like the uncashed check I found in my pants pocket after two months – it was still good.

I still go kind of crazy over the missing credit cards, but hey, if that didn’t happen my purse would never get cleaned.

Memory is not all it’s cracked up to be.  I might be losing my mind but if I keep my mouth shut, probably no one will know.  I’m just sayin’…