A to Z Challenge: X for Exasperated

(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

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: R for Rest, REM Sleep Disorder and Respite

Caregivers struggle to get their rest. Often those they care for also struggle to get good rest. But sleep is essential for healing, and for maintaining circadian rhythms that work in the body’s favor. Times of rest are when the body repairs itself physically and mentally. Everything goes better when all are sleeping well. But there are some enemies of good rest. Here are a few I know about.

It used to drive me insane. I traveled with a client who made me go around our motel room pinning the drapes shut with clothes pins, putting tape on the LED lights on any appliance that had them, covering up the clock, and putting towels at the bottom of the door to keep out the hall light. She insisted she could not sleep when there was any light in the room. In my mind, I was telling her my solution – shut your eyes and the light goes away.

Turns out she was right. We are programmed to become sleepy when it’s dark. We need to get light exposure during the day. It actually plays a part in keeping us alert and awake. But as evening comes, a hormone our body produces called melatonin, increases and we get tired. But even ordinary indoor lighting can interfere with our melatonin production. LED lighting is probably the worst kind and that is why having a lot of evening screen time – TV, computer, and cell phone is counterproductive. Ideally, you and your person should try to get out during the day, keep lights low in the evening, and avoid screen time the last few hours before going to bed.

Our short winter days make it hard for us to get light exposure. We have a light box to help with that and keep it next to the treadmill. Kind of like a walk in the sun?

One of the most common problems I read about in the caregiver support chats is the condition called “sundowning”. People with Alzheimer’s or other dementias might have the experience of getting more anxious and upset in the late afternoon or evening. It’s a kind of confusion that keeps them thinking that they should be up when you think they should be asleep. It can be exhausting for everyone involved. Having good routines with activity during the day (less napping), relaxing time before going to bed, not eating too late in the day and possibly boosting melatonin levels with a supplement, can all help.

It’s also just common sense to not try to get the whole day’s fluid intake in the evening (when you finally remember…) because frequent bath room trips do not make for good sleep.

For many years before his diagnosis of Lewy Body Dementia, my husband had vivid dreams. He would talk, shout, run, peddle his bike and fight with kicks and punches during his nightmares, scaring himself and me. We didn’t sleep very well and we have stories about that. We learned that this was called REM (rapid eye movement) Sleep Disorder, and it is one of the symptoms leading to the diagnosis of LBD. I was fascinated to learn that most of us are somewhat paralyzed when we sleep, which is why we don’t act everything out. Not so with this kind of dementia. Again, supplementing with melatonin before bedtime has helped Dennis to avoid most of this and sleep quietly.

Caregivers, there is another important R word that you should know about. If you are at your wit’s end, exhausted and nothing is getting better, you might need respite care for your loved one. Respite is a short period of rest or relief from your difficult situation. Sometimes it can be as simple as asking a relative or friend to help for a night so you can get some sleep. Respite care is also a common feature of hospice care, so inquire if you need this kind of help. Your person depends on you to stay well and take care of yourself.

I am reminded of the scary statistic coming out of one caregiver study – death rate of caregivers was 63% higher than that of the control group. After six years of the study 70% of the caregivers had died before their person and had to be replaced. Stress can do that to you. I’m hoping to stay well and be here for my people until they don’t need me anymore. Just sayin’…