A to Z Challenge: Z for Zeitgeber

The last letter of the alphabet! This was an interesting and challenging experience, as always, and I am so grateful for all the connections and comments. Thank you all for reading and encouraging me, and other caregivers.

Zeitgeber

I ran across this interesting word as I was studying a book called “The Paleo Approach” by Dr. Suzanne Ballantyne. Zeit means “time” in German and geber means “giver”. A “time giver” is “anything that influences your circadian clock”. Your circadian clock is all about your body’s routine. And routine is one of the most important tools of caregiving.

Examples of zeitgebers are the light and dark cycle, food intake and activity. Regular times for meals, for exercise and for sleep are beneficial to all of us, but especially for the very young, the elderly and for those with dementia. Being able to depend on a routine gives the impression that things are under control, and having any sense of control is comforting.

Routines

Routine is not the easiest thing for me as a caregiver. I am the queen of spontaneity, and will usually go out of my way to break up a routine. But now, I have things I do pretty regularly. One of the most important reasons I’ve developed routines is because they help me not to forget stuff I would otherwise probably forget. Routines also cut down on decision making because we have already decided what and when. And of importance, the routines help my husband know what to expect at various times of the day.

Circadian Rhythms and Sleep

The light/dark cycle is probably the most important zeitgeber, and the one I have the most trouble with. Being outdoors in sunlight during the day, and in the dark at night greatly affects circadian rhythm, which in turn affects the immune system, mental ability, mood, alertness and energy level. Ideally, the husband and I should get as much light exposure as possible during the day. We both should cut down on our screen time at night as well. Blue light from our computers, phones, TVs, and LED fixtures signals our bodies much like daylight does. It suppresses melatonin production. Blue light not only signals through the retina of our eyes, but even our skin has sensitivity to it. In contrast, low light and darkness signal the production of melatonin and bring on relaxation and sleep.

It is dark outside. Due to my circadian rhythms, I am getting sleepy. Take care of yourselves as we go through these strange times. Good night to all.

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This evening Dennis, my husband, came out where I was sitting and apologized. Not knowing what he was apologizing for, we talked and I discovered he had read the X post. He was saying that he was sorry for making things hard for me. I was surprised that he had not read other posts this month, even though he was aware that I was writing on the subject of caregiving. He was sweet, and humbly aware of the impact that his illness has had on me and on our relationship. It’s moments like this that make me know that he is more than just my patient. He is still very much my husband.

Forty-seven years and counting…

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 W for Washing (Feet)

You will believe this more as you age, but truth is that something as simple as foot care gets really difficult when you can no longer bend over and get close to your feet. Problem feet should go to a podiatrist, but most elderly people, like my mom and my aunt, can be cared for at home quite easily. I soak their feet for a few minutes in a basin of warm soapy water (and I always hear “oh, that feels so good!”) then gently clean under the nails and clip them. I finish with a foot and lower leg rub with lotion. If you’ve ever had a pedicure, that’s basically what it is, without the polish.

Your person’s feet are pretty important and it is good practice to look at them carefully. The best time is when you are washing them. Look between toes for cracks that indicate fungal infection, which is easily treated. Check heel and ball of each foot for callus buildup and remove some of that dead skin with pumice stone. Toenails that get too long are like having little daggers on the feet. They get caught on pant legs, wear holes in socks and even cause bloody scratches on legs. That’s when I usually get requests for some foot care.

Circulation is often poor in the lower extremities which leaves feet open for pressure sores on the heel and other bony parts. I know what it’s like when I start to get a blister from shoes that rub, or when I stub a toe and rip a nail off. It hurts, but your elderly person may not even feel the pain if they have neuropathy. It is a tragedy when an injury progresses to an infection, or even worse, to gangrene. Good caregiving means catching these problems early (even better, preventing them).

There is a surprisingly spiritual side to taking care of feet, which usually rank low on the list of body parts that get cared for. It’s an act of service to wash and care for another person’s feet, as Jesus did, recorded in the Bible. It’s also kind of hard to let someone do such a common, lowly act for you, which is how Peter felt when Jesus did it for him. Maybe it’s just me, but I can’t help but think of that when I’m helping someone in that way.

Another benefit I’ve noticed, as I sit on the floor with someone’s foot in my lap (I do it that way but you can be a bit more professional if you want). My people talk to me. There’s something that happens with caring touch that makes others feel safe, and open. Maybe it’s just because they know I’m an audience that won’t be jumping up and running away any time soon. Talking is therapy. It is good and requires nothing but that I listen.

Caregiving for other’s feet has made me aware of how important my own feet are to me. I have to take care of them if I want to be mobile. Yours are important to you, so take some time and give them some care, caregiver.

These are actually my feet and I am proud to have all my toenails grown back after losing some of them on last year’s Grand Canyon hike. It takes a long time!

A to Z Challenge: Letter S for Senior Living

Years ago (before baby boomers started getting old) the elderly either aged at home or they went to the “nursing home”. That’s what we called it then, and it was the place you went right before you died. No one wanted to go there.

I don’t remember exactly when assisted living became a common thing, but I remember at one point my mom saying that she didn’t think it would be so bad to stay in a facility like that. I was surprised that she sounded so positive about it, but then, that’s the way she is. She’s never wanted to be a burden to her children.

Water’s Edge – 1 and 2 bedroom apartments with garages if needed

She had her name put on the waiting list for an assisted living apartment at Water’s Edge, a complex attached to our local small hospital. A couple of winters ago, her name was next on the list and she was contacted. I happened to be visiting at the time. She decided that since she had help, she would try it out for a few months and see what it was like. We moved her in. I got to stay with her for a week.

Moving day, car loaded, excitement, work…

Senior living, for those who can afford it, has become something quite different from the “nursing home” of olden days. There is every level of care available, at different price points. Many people are totally independent and are just paying for the apartment, knowing that it is in a secure building and that they can easily transition to more care should they need to. Others appreciate being able to have meals prepared for them, socialization and exercise options, and regular check-ins with nursing personnel.

One of these inside each apartment. If you didn’t check-in with them each morning, they would send someone down to check on you.

It was an interesting experience for both Mom and I, and I am glad that we were able to familiarize ourselves with the concept of assisted living. The stigma and fear of it has evaporated. After a couple months, that got her through the worst of the winter, Mom decided she did not need even their minimal level of assistance, so she moved back to her condo.

Mom signing out, staff likes to know where you’re going and if you’ve returned. That’s kind of nice, kind of necessary.

I am wanting to tell anyone who is a caregiver, that it is okay to consider an assisted living facility for your loved one (your person) when their care is more than you can handle. And if you can move there with them, don’t wait until you’ve burned out doing everything yourself. Go there. Some of them are very nice and very practical places to live. Check them out and see what your choices would be before you are in desperate need. You will be glad you did.

Water’s Edge, where Mom stayed, is probably typical of many assisted living situations. Many of them are associated with hospitals and offer increased nursing care, rehab care, memory care, and other specialized services that might be needed. I lived close to another one in Florida and they also hosted events and concerts that were well attended by residents. They really do try to offer all the things that people like to have (yup, there is Bingo).

The price tag may seem high to some, but do not forget that they often take care of cable TV and internet, electricity and other services, all in one bill. If you like their menus, you won’t have to grocery shop for yourself as much. There will be no lawn to mow, and no house maintenance costs. There may be a free gym with programs and equipment provided. And what value do you give peace of mind? They normally have someone on staff who can answer financial questions, and help you with insurance arrangements, or find government programs that might be available.

Many people, like Mom, just prefer to stay in their own home as long as they possibly can, with minimal help. I am glad Mom has that option, and I am glad to be her helper. But, should she need more help than I can provide I know she will be okay with senior living.

Have you ever visited an assisted living facility or care center? What did you think of it?

A to Z Challenge: Two N Words

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 H for Hygiene

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?

Assisted Living 101: final thoughts

Did I mention at the beginning of this that so many people think “nursing home” when they hear the words “assisted living”? (Yes, I did.) The truth is that no one wants to be sick, disabled or senile and in need of a nursing home.  The truth is that no one really wants to be old, but the alternative is to be dead and that’s not great either. If we grow old without being sick, disabled or senile we will be blessed. Some of us will need to have good nursing care and a nursing home will be the safest place for us. Probably all of us will need assistance at some point. Who will assist you?

Before that time, we hope to take care of ourselves and be independent as “young elders”. It takes courage to ask where we best belong, and where we fit in. It also takes courage to deal with one’s pride and go live in a place where others might need us. Mom’s apartment at Water’s Edge is designed with aging in mind, but it is just like a nice apartment anywhere else. The basic plan here does not leave her feeling like she is an invalid, in fact, she feels like she’s on a cruise.  What would improve her experience here would be having more people closer to her age.

We have been meeting other tenants at meal time. Marjorie, Eleanor, Ken, Emil, Violet who is going to be 103, and the three Dorothys. Underneath the aging exterior, all of these individuals have interesting stories and quirky personalities that can come rushing out when you start conversing with them. This particular brand of assisted living has been good for them. They have family nearby but are really safer and happier here than they would be elsewhere. It is a good place.

Will Mom feel like she belongs here? She doesn’t know but is willing to give it a try. She has the option of returning home and living with family if she needs it. I will end the way I began. There is not one right way to do this aging thing – everyone’s situation is different and there are lots of variables to deal with. But I have learned that it is good to do the dealing gracefully, thoughtfully, and without fear before it is an emergency.

Aside: Today we met Ken who is a retired Air Force Lieutenant Colonel of 27 years. When he could no longer play it, he donated his digital piano to the chapel at Water’s Edge. After we had lunch at the same table, he invited us to come learn how to operate the instrument. (Mom has always loved having a piano around to play when the urge hits…) Interesting people… see what I mean?

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Outside the door, each tenant has a name plate and a small shelf where they can place some object. For now, it’s a china doll, but eventually it will be something red, I think.

The Older Generation. Party!!!

It happened so quickly. Suddenly, I’m giving a New Year’s Day party that’s about three times bigger than I anticipated.  I don’t do parties like I used to and I’m kind of wondering about myself.

For about a week I have been planning to take the New Year’s holiday shifts with my client, Jack. The other girls have taken so many extra days while I’ve been gone, including the Thanksgiving and Christmas holidays so it’s fitting that I should give them a holiday off.  Besides, working for Jack is hardly like working at all.  I have to go beyond nursing responsibilities to things like determining what chores stress Jack out and how can I help with them?  Sorting mail and helping fill out insurance forms are common tasks, as are cleaning and organizing closets, getting rid of clutter.  These are all things Jack’s wife would do if she were alive.  And some days that’s how I decide how to spend my time, asking “what would Carol do?”

On New Year’s day I thought Carol would probably enjoy seeing Jack watch football with a few of his friends.  So I suggested that, if he felt up to it, he might invite a few people over.  Jack is doing so much better these days, getting stronger and more independent, and well, he jumped at the chance.  For seven months his friends have been visiting him in the hospital and doing things for him so he is eager to host them for a little fun.  Jack is probably the most hospitable person I know. After retiring from the Navy he spent over 20 years arranging conventions for different associations as their hospitality expert.  He loves to take people out to eat.  And he and Carol used to entertain in their home quite often.

Today I explored the details of what Jack had in mind.  I had already given him the bare outline of my intended menu to see what he thought of it.  I asked him how many people I needed to get ready for.  He started making a list.  It took him a while, but finally he said twelve or thirteen. That was about ten more than I envisioned so I began conscious breath control and sat and thought a bit.  He went back to the list and a few minutes later he amended the number to 19, because surely there would be some who wouldn’t be able to come.

There you have it.  I’ll be throwing a party at Jack’s house for pretty much all his close friends, most of whom are over 50 and many of whom are over 75 (Jack is 81).  I think it’s pretty safe to say that activities will be limited to eating safe food and watching several hours of football, early football, probably the Rose Bowl, party over at 8 pm,

I think I remember how to care for a house full of people, and I’m pretty sure I’ll have a great time seeing Jack have a great time.  But this whole thing did kind of sneak up on me, and I have to say that sometimes I kind of wonder about myself…

What do you think you are going to be doing on New Year’s Day?  

Vigil

If a person is a nurse, which I am by profession, it is almost impossible to avoid having to make decisions for people. At the very least one has to know when to influence people to make a decision for themselves that is best for them. Sometimes the decisions are about life or death and the responsibility can be scary and somewhat overwhelming. It just comes with the job. When I walk out the door on my way to work I am most always in a prayerful mode, asking God for the patience to make it through the day and the smarts to know what I am seeing when I look at my clients.  It’s been one of those scary weeks and I am thankful that my prayers are heard and answered.

My newest elderly client (and friend) has been out of rehab and at  home for almost three weeks.  He came home far too soon and needed a lot more help than any of us knew he would need, but we had hopes that his strength would increase and he would thrive. He was so overjoyed to be in his own house and out of the hospital.  I was leaving to visit my parents a few days after he came home, but we managed to get a crew together to be with him almost 24 hours a day.  There were ups and downs as everyone settled into routines. I returned from my time away and began helping with Jack’s care again.

And then this week, there came the morning that he was so short of breath that sitting up on the side of the bed required a rest period.  Trying to get into the car for a doctor appointment was so difficult that we decided to cancel it.  And his own admission that he didn’t feel well and just wanted to lie down finally tipped the balance for me.  Something was wrong and not getting better.  This was the first time I have ever called 911.  It was a good decision.  We were in the ER for the next six hours and he was finally admitted to the hospital with congestive heart failure.

There are four of us caretakers for Jack and we are still keeping vigil.  He was moved to the cardiac ICU yesterday. Jack remains uncomplaining, always worrying about whether we have eaten, always trying to send us home to rest and wondering if we’re taken care of.  We have hopes that he will improve and come home again, but there is an awareness of how fragile life is, how quickly things can change and how precious the time is that we have with each other. I’m just saying that vigils can be a bit stressful…

Giving Care

This week I have not called my mom.  I have not called my daughters. I have not done any writing. I have not done the laundry or cleaned the house. I have hardly been at home.  I started a new caregiver assignment that turned out to be quite challenging.

Even young people can have a hard time when they are weak and sick, but being that way when you are elderly is worse.  It is a pit of helplessness.  My friend Jack is in that pit.  I don’t know if I can help him climb out but I know I can’t just leave him there either.

After spending seven months either in the hospital having surgery, or fighting infections, or getting his diabetes regulated, or in rehab trying to get his strength back – he is finally at home.  He was giddy with excitement when they brought him out to evaluate his home for safety.  It wasn’t that any of the institutions were bad places.  He had just had enough of the routines, of professional friends, of hospital furniture, of TV on the ceiling.  He dreamed of the peace and quiet of home.

In spite of having a nurse manager, an occupational therapist, a physical therapist, a home health aide and me, medical “girl Friday”, this week at home has made Jack realize that he had some very high expectations.  Meals don’t appear magically at home.  Messes don’t clean up by themselves.  There are no helping hands at home every time you feel a little dizzy or off balance.  Home can be a scary place when you are alone, when you fall and can’t get up, when your blood sugar is so low you can’t think straight or have the strength to get out of bed. Help comes and goes, but has often gone when you need it most.

Every day during my time with Jack, we would work on some of the problems he was having, we would have a meal together and then he would nap, pretty much worn out.  My five hour stretches were the longest periods of time that anyone was able to be with him.  Every time I left, I felt a bit guilty, almost afraid of what I’d find when I returned.  I got the impression that he was anxious too, wondering how he would get by.

So, I’ve gotten a chance to watch Jack suffer, mentally and physically.  He has had to give up every shred of dignity as we women do things for him that he would much rather do for himself. But I have yet to hear a word of complaint, or even of anger really,  Somewhere along his life path, Jack has learned to suffer well.  As I watch, I think how valuable an example that is.  We all will suffer something, sometime, and have to decide how to view that suffering, how to act when we are in the middle of it.  Can we learn and grow from it or is it a waste of time?

I found  a caregiver who will stay the night with Jack, starting tonight.  As he was meeting her he seemed more hopeful, stronger, more able to talk.  Maybe he will work through this hard time and gain his independence once again.  At the very least, I think he will get a good night’s rest.  I will also rest better tonight.

Have you learned something valuable from a time of suffering in your life? or from watching someone else suffer well?