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: Letter T for Touch

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 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: 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’…

A to Z Challenge: Letter Q for Quiet

It’s quiet here in my room. I have the luxury of a room to myself these days. Mom had us move out of her condo last summer and the result was that the husband got his own sleeping room and I got the master suite. It is my living room, my office, my music room (my keyboard), my craft room (sewing machine and serger and cloth stash), my dressing room with a walk in storage closet, oh, and my bedroom with a king size bed. I practically live in here because it is quiet.

The rest of the house is open plan, kitchen, dining and great room, and the television is there. It is on most of our waking hours, and the volume is turned up because the husband has a hearing problem. It is the “not quiet” place in the house. When I go out to work in the kitchen I always have to ask him to turn it down. He starts talking to me whenever I appear, in a voice so soft that it cannot compete with the TV.

Who says men can’t multi-task. Two screens at once is common.

He does have hearing aids, and they do help, but they are not perfect. When he takes them out his world gets much more quiet. The loudest thing he hears is his own voice. It’s nearly impossible to have a normal conversation with him if he’s not wearing them. There is a lot of “what did you say?” and “I can’t hear you!” going on. I wish I could remember some of the things we’ve thought we said to each other. It’s funny how much some words sound alike.

Let’s face it. Hardly any of us are going to leave this world with perfect hearing, and most of the people who need caring for have some deficit in this area. We start noticing it in crowded restaurants, and it gets worse from there.

What a disadvantage this is for those in our care! My aunt and uncle are “safe at home” in a somewhat isolated country area. Their most frequent communication is by phone. When they have discussions with their financial advisor, or one of their doctors, they are worried that they might not be hearing correctly. They often have asked me to go with them to appointments before we were sheltering in place, but now they sometimes ask me to be on phone calls with them. Being that extra pair of ears is important.

My uncle doesn’t have hearing aids, and probably will never get them. He’s pretty good at conversations if he can look me in the face and do a little lip reading and assess the context. I’ve discovered that hearing aids have a stigma attached that many elders cannot get past. They also magnify sounds in a somewhat unbalanced way no matter how high tech and expensive they are. And they malfunction. I am often buying batteries, looking for batteries and fixing the husband’s hearing aids. It’s one of those pieces of equipment that call for the McGyver in me.

For those who have not yet experienced these, they are hearing aid batteries. Tiny things.

Right now the husband has picked up his trumpet, which he hopes to be able to play again – maybe even start a small band when he gets better. It’s sound/noise that he loves. The TV is his window on the world and about the only interesting thing he does. He needs the noise. I need quiet. It’s restorative for me, and I don’t feel guilty retreating to my sanctuary (well, maybe a little bit, sometimes…).

A to Z Challenge: Letter P for Parkinsonisms

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: Letter O for Organization

First, I will say that O is not my favorite letter.

Organization, in the caregiver’s world, is absolutely critical. Nothing goes right without it and I can’t emphasize that enough, although I’m going to try.

Take, for instance, the organization of pills, medicines, and supplements. The husband is an avid proponent of any pill with a promise, and they all have a promise. I don’t blame him, so if he wants another vitamin and we can afford it, I buy it for him. But my least favorite job is keeping all his pills organized where he can find them, or even where I can find them. So I’m going to share with you some ways of organizing that you may find helpful.

You can organize by bottle size

Bottle cap color, useful when you can only view them from the top.

Or by bottle color, if you have to view them from the bottom.

I’m not sure how this would ever be useful. So be it.

And people who get a fixation on alphabetizing everything can do this.

I think they try to do this at the pharmacy. It doesn’t work. I’ve spent hours looking for things.

To go a little deeper, pills can be organized according to when they are taken, morning or evening, or whatever time of the day you like to take them.

How easy is this!?

I am familiar with all the husband’s pills to the point of having feelings for individual ones. Some I disdain, some I admire. In the process of handling them I organize them in categories according to size

According to color

According to how easily I think they can be swallowed

Way too big, sharp edges

And according to whether they roll around and have to be picked up off the floor.

These bad boys will not stay put.

I hope someone finds this helpful because there are times when we caregivers need any help we can get. There are times when playing with pills may be our only emotional outlet, and I say go with it.

I am a caregiver. Welcome to my world.

Brought to you by the letter O

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 M for Mobility

Mobility – did you know that being able to move around is part of the definition of a living being? It’s one of the things that distinguishes us from plants and minerals. When it is altered, disabled or gone we have problems.

So many of the issues we, as caregivers, deal with are mobility issues. When our family member/client can’t walk, or perform the activities of daily living it becomes our role to substitute our own effort and energy to make tasks possible and safe.

Sometimes we turn to equipment (See post on letter E) to provide mobility. Wheelchairs, walkers, lifts of various kinds, and braces are all useful, so it is good to know the general principles of how to use those things. As a caregiver for a quadriplegic woman, I appreciated this equipment and got to be pretty good at taking things apart and fixing them. Yes, like any piece of equipment, these things break and need maintenance regularly, but they do make moving possible for your person and less physically taxing for the caregiver.

But other times, less assistance is needed – enter the principles of body mechanics. Knowing how to help someone get out of or into a bed, or a chair, without hurting yourself is critical. Many times accidents and falls at home can be prevented by learning transfer techniques, a transfer belt, and preparation of the environment (taking up rugs and objects that could trip). Caregivers can learn all this useful stuff by going to occupational therapy or physical therapy with their person. These therapies are almost always available and prescribed by doctors for their patients.

My husband, like many people with Lewy Body dementia or Parkinson’s Disease, has trouble with his balance and compensates by moving slowly and carefully. He has fallen a number of times. He has a shuffling gait when walking and that was part of what led us to seek a diagnosis. One time when walking, his muscles locked up completely and I had to go for a wheelchair so he could sit and be wheeled back home. He also has a cane for times when he feels especially unsteady.

We were out on a walk and he needed a rest.

It’s so unfortunate that people with mobility problems are often also tired, weak, and unmotivated to exercise. Caregivers need to be cheerleaders (yes, another hat to wear). Encouraging your family member or client to do the activities that he/she can is how you help them to stay functional. My husband adopted an exercise routine that could be done to music. He calls it his “dance”, and it’s something he can do with other people when they don’t mind getting a little silly.

Movement, however minimal, also helps attitude and stimulates healing and recovery for some.

A to Z Challenge: L for Legalities

My experiences with my husband’s condition of dementia have given me some things to share about the legal side of caregiving. Being knowledgeable about this area began, or in some cases should have begun, before I became a caregiver.

How Much Do You Know?

I’ve always known it was important to have some knowledge of our financial standing. I knew where our bank accounts were, what credit accounts we had and what our income/expense ratio was like. I even paid a lot of the bills. But most of our financial business had been started in the husband’s name, so ever since his diagnosis, it has been constant work to gain decision making access in all these areas. How many times have I heard the question “What is the primary account holder’s SS#/birthdate/password/pin?” Especially for a spouse or family member who becomes a caregiver, these facts should become part of the records that you keep. You will use them a lot.

Not only was I trying to gain decision making access – that was hard enough – I was also selling a home and moving to another part of the country. Changing addresses with banks and credit companies, getting new residence established, new driver’s license and car insurance, new health insurance and wrapping up our financial life in Florida. My husband was able to help a little but was struggling with his health problems. As a spouse, taking on the role of a caregiver, I had a lot to learn.

And don’t even let me get started on income tax…

Legal Help or DIY?

I know that legal advice is expensive these days but if it can be afforded it is great peace of mind to have an expert do these documents. There are elder attorneys who know how to cover all the bases, especially with government programs that you might want or need to help pay for care. I was especially concerned since my husband had a condition that could possibly require long-term care in the future.

Originals in a safe place, and our copies for reference. So glad it’s done.

A Will

If you are caregiver for a family member, help them understand how important it is to have a will. People usually know this but it is so commonly put off. Even young people who have assets or dependents need to have a will.

We had done simple wills with Legal Zoom years before but knew it was time to get them updated. In our minds, having our affairs clearly identified and our wishes concerning them spelled out in a legal document is a gift to our daughters who will likely survive us. Having a Will, Durable Power of Attorney for Finances, and other legal documents ensure that our wishes will be carried out. So, I ask, do you have a will?

Advanced Health Care Directives

Some documents such as Advanced Health Care Directives, and Durable Power of Attorney for Health Care (POA) are the next step. Most medical institutions will ask if you have these, which is a clue as to how important they can be, especially for caregivers. Without them, someone other than you will be making decisions for your family member. These documents need to be in place before they are needed, and only come into play when the owner can no longer make decisions for themselves.

How a Caregiver Can Help

To summarize, you as a caregiver should know whether the person you are caring for has these legal documents for themselves. You should encourage them to do so if they don’t. You should know who the people are who have legal power to make medical and financial decisions (being a caregiver doesn’t necessarily mean that it’s you.). And while you are helping someone else, it is a great time to make sure you have done your own work.