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.

A to Z Challenge: Letter K for Keeping Records

Do you trust your memory for a lot of things? Do you ever forget if something happened a week ago or two weeks ago? Do you ever complete a routine task without concentrating on it and later wonder if you did it? I have been in all these places at one time or another. Sometimes the person I’m caring for can help me out. Other times my person has been too young, too sick, struggling with dementia, or maybe just as distracted as I am. Learning to keep records would save me in these situations, and I admit I haven’t got this down perfectly. But, there are a few things I’ve found helpful.

I have started the habit of writing things down, and keep paper and pencil in multiple places. Even the things I think I’m going to remember may get clouded with other facts and happenings. My aunt and uncle keep a calendar close to their phone and write down their appointments when they get a reminder call. I use a datebook for appointments but also to record significant events, like a fall, the start of a new symptom or a medication side effect. Doctors often ask about these things so the datebook always goes along to appointments.

Another good use for your notebook is to record blood pressure readings if your “person” has hypertension and is on medication for that. Ideally, the doctor will want to have BP taken each day, at the same time of day and with the same monitor, until he knows the medication is working well. If you are buying a blood pressure monitor, get one that records date, time and pressure and stores the information for later reference.

See the little button bottom left? It keeps record of past readings.

Monitoring medications is one of the more serious tasks of caregiving, and it does require keeping records. A helpful website for this is Drugs.com. It keeps track of all the medications and their possible interactions for anyone who cares to make a free account and input their information. It’s almost like having your own personal pharmacist.

I love to make use of online apps that help me connect with doctors and clinics. Our rural clinic gives access to primary care and specialty docs through a health app that keeps track of all appointments, visit summaries, and medication lists. As a caretaker I had to set up my family members’ accounts and sign the necessary legal papers (proxies) to have access to their records. All four of the people I help through the app are linked to my own account and I only need one password. I can ask questions and get answers for them, change appointments when necessary, and see test results. This has been especially helpful during this pandemic time.

Portraits of our vitamin friends.

Don’t forget that if you have a smart phone, you have a valuable helper. I took pictures of all my husband’s supplements and medications, which can be referenced any time someone asks me about dosages. I also put my family members birth dates, addresses, and doctor’s names in the notes section of their contact record on my phone. It really helps to have that information handy when filling out forms at doctor’s offices.

And do you have a file cabinet? I do. I have folders for our medical, dental and vision visits and bills. I also have files for those papers from insurance companies that tell you what they’ve been billed. I’ve heard so much about insurance fraud and if I see procedures that I don’t recognize, I ask questions. I don’t always understand what I’m seeing, but I’m afraid to throw them away (most of the time.)

Start your stash of records now and keep them up to date.

A to Z Challenge: Letter J for Joy

Deep, esoteric reading material leaves me feeling dumb and vocabulary challenged as a rule, but there is something that I took away from a recent read that resonates with me. It was about joy. (And I may have gotten it wrong, but forgive me C. S. Lewis.)

He uses lots of big words…

I agree with C.S. Lewis that real joy has a sadness, and a longing behind it that makes it what it is. I have found that to be true about caretaking. Every time I’m doing something for someone, I’m wishing they were well and able to do it for themselves. I’m thinking about what I have that they don’t, what I can do that they can’t, and I’m grateful that I can help them. There is joy in adding to their life something they cannot have on their own.

There is also the joy of coming together, collaborating and accomplishing a task, that is different from anything I can do on my own. I believe we are meant to be in community with others and find our greatest satisfaction in sharing our skills, our words, thoughts, and our time – and that is often what caretaking is about. Almost always, the people I am caring for have something that they give back and share with me. There is joy in that.

I am sad when caretaking seems like a one way street with no feedback, no acknowledgment, no life giving return. But even then, I feel that I am honoring God by caring for a life that he values until he says that care is no longer needed. Caretaking teaches me things about myself that I couldn’t learn any other way. Persistence, integrity, compassion, acceptance, courage are all attributes that get challenged and honed… courses in Caretaking University.

That’s it. JOY. Caretaking is hard work, at times frustrating, exhausting, discouraging and other “bad things”, but joy is there to be found. I have named it and realize that it makes me able to continue taking care of others.

A to Z Challenge: Letter I for Investigator

There may be some things in the world of health that remain the same over time, but a whole lot more things change. It can be hard to keep up with the latest knowledge. Caretakers should not be afraid to investigate on behalf of the person they care for. Be curious and be a problem solver.

One of my favorite clients was always asking me to solve problems and invent ways to keep her comfortable. Curiosity and investigation would usually lead me to a solution of some kind. She named me Shirley McGyver. (I’m very proud of that.)

The husband and I have both had to investigate his diagnosis and care. Most of the time when we tell people he has Lewy Body Dementia they say “Lewy who?“ In fact, many people in health care have not heard about LBD, even though it is the second most common dementia behind Alzheimer’s. It has largely been up to family caretakers to know the ins and outs of their loved ones condition and make sure that they are treated appropriately. I belong to two online support groups for LBD and they have given a wealth of information about the difficult and unpredictable course of this disease.

It is important to investigate for others when they cannot do it for themselves. As a caregiver, you don’t have the same limitations that your person has. Often you can see what they cannot, go where they cannot go, and use resources that they cannot access.

Investigative caregiving has led me to:

-research drug interactions when I notice a new skin rash appearing

-check vital signs when my person says they “feel” a heart arrhythmia

-notice hypertension and bring it to the doctor’s attention

-determine that a person’s allergy symptoms are caused by her cat!

-avoid serious problems for my patient by listening carefully to their complaints

Investigative caretaking takes observation skills. It also takes the persistence to follow up on things that just don’t seem “right”.

My “closest to home” example of timely investigation happened years ago when I was still in nursing school. I would visit my grandmother when I was home on weekends. She was an intelligent, sociable lady who was alert, oriented and mentally competent. She was also on a daily diuretic medication for congestive heart failure. I was very surprised one week at school to get a phone call saying that she was disoriented, frantic, and acting very strange. Knowing this was not her usual behavior, I looked up adverse effects of her medication and was able to tell the caregiver that Grandma needed to be taken to the ER to have her potassium level checked. I was so thankful when they were able to reverse her condition quickly and easily by giving her potassium.

It’s helpful to me to think of myself, my person or client, and their medical professionals as an investigative team. Giving frequent, sometimes daily, care means that I have eyes on situations that the doctors never see. My job on the team is to report, as accurately as possible. For that reason I go to all doctor appointments, and all procedures. I also have proxy access to the online health charts of all those I care for. I am well acquainted with all the ladies at the registration desk since I sometimes see them several times a week, with a different patient each time.

I am a private eye (always wanted to be one…).

I am an investigator.

I am a caregiver.

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?