A to Z Challenge: Letter F for Food

Food Can Be a Problem

People who need our caregiving are probably people who have issues with food. For one reason or another, they may not have the energy to shop and cook. Often they need special diets. Often nothing sounds appetizing to them or the opposite – food is one of their few comforts and everything sounds good. Whatever the case, what happens in the kitchen is very important in caregiving. It’s true, food is medicine that you as a caregiver can give. (Different perspective, yes?)

It is also true that a lifetime of eating poorly can’t be turned around in meal or two. There will be some foods that take effect more quickly than others (ask anyone who likes prunes) but complex processes like weight loss or building strong bones, strong immune system, a resilient nervous system, etc… take lots of time. My role as “caregiver in the kitchen” is one of the hardest for me. Maintaining consistency, making meals attractive, serving a good variety – a real challenge when life gets busy.

Places to Find Help

What a surprise it was to learn that the gut is like a second brain, and it needs to be treated as special, and fed with care. This is an area where it will serve you well to become a learner – first of the diagnosis of the person you care for, and second of the current diet recommended for that diagnosis.

Medical schools do not spend a lot of time teaching about the role of diet in disease so your doctor may not have a lot to say about specific nutritional guidelines. There are specialties in the areas of functional medicine, naturopathic medicine, and integrative or wholistic care that will spend a lot more time with you on the subject of food. Dietitians and nutritional specialists will be more helpful if they follow current research. Be proactive and ask them to work with you. Don’t be lazy about this, and don’t let them be either.

You can find much of the latest research on diet yourself, if you have a computer. There are some tremendous changes coming in the Standard American Diet and the Food Pyramid due to discoveries about the causes of many chronic diseases (including the big ones like heart disease, diabetes, cancer and dementia). It’s an exciting field. I’m posting links to some of my keto meal discoveries as well as listing some of our most helpful references at the end of this post.

Food is pretty, and pretty amazing.

Five (easy) Guidelines

This is such a big topic, and new changes and discoveries are frequent, but here are some things I’ve found to be basic for most chronic conditions:

– avoid processed foods as much as possible. If there are more than two ingredients it’s probably processed.

– buy organic when you can

– increase eating of fresh vegetables and fruits with bright colors. It’s hard to go wrong with this.

– decrease carbohydrates, which includes anything containing large amounts of sugar (soda, desserts, alcoholic drinks) and also breads, pastas, rice and white potato

– don’t give up if things don’t go well for a few days. Return to sensible eating as soon as you are able.

A keto salad lunch

My husband has Lewy Body Dementia/Parkinson’s and he is a researcher of his own remedies. We have seen promising results from his diet which is built on a conservative approach. Lots of colorful vegetables, moderate amounts of clean protein (eggs and meats) and as much healthy fats as we can get (avocado, coconut and olive oils, animal fats, butter, etc…). We also addressed our magnesium and vitamin D levels after finding out that we were low in those nutrients, as are most people these days.

We’ve tried some extreme diets, but found we just couldn’t build a life around weird food choices. The desire to eat has to be kept alive.

Our Ketogenic Strategy

The Keto Plate

  • “The Grain Brain Whole Life Plan” by Dr. David Perlmutter
  • “Fat for Fuel” by Dr. Joseph Mercola
  • “The Paleo Approach” by Sarah Ballantine, PhD
  • “The Ketogenic Kitchen” by Dominic Kemp and Patricia Daly

A to Z Challenge: Letter E for Equipment

Equipment. I feel like saying “don’t get me started!” The truth is there is a piece of equipment to make almost every job easier. Yes, it’s true. If you are a caretaker, make your life easier by becoming a student of what’s out there.

My most memorable piece of equipment was a 400 lb. electric wheelchair owned by a quadriplegic friend (and client) of mine. It was in the price range of an expensive car and was customized to her needs with joystick, recline features, etc… One of my tasks, in addition to nursing, was to wrap this wheelchair so it could go in the cargo hold of a plane when we traveled. Several egg crate mattresses for padding, rolls of duct tape, and warning signs plastered all over it – that was just the beginning. We also had a smaller regular wheelchair, and a hoyer lift to disassemble and carry along. I remember sitting in the window seat watching the baggage handlers try to get the big chair into the cargo hold, and trying not to let my client see. Keeping track of, and guarding, all that equipment was… an interesting challenge.

There are other, much more common pieces of equipment, that I’m often surprised that clients don’t think about until I suggest them. Are you helping someone who needs to use the bathroom often, and can’t move very fast? Portable commodes are a favorite piece of equipment. Time in the bathroom can also be made a lot safer and easier by toilet seat risers, shower benches, and grab bars, grab bars and more grab bars. You probably can’t have too many of those. (Toilet seat risers are tricky. I thought I was getting the right thing, but no. I have two and neither one is being used… a story that won’t get told here.)

It’s so nice not to have to carry things when you’re feeling a bit unbalanced.

Keeping my people mobile as much as possible is important to me. A simple pair of hiking sticks is what Mom uses outside. Those extra points of balance are all she needs. Inside she has a shiny, red walker which she uses to transport small items (and her coffee cup) because it has an attached basket and a seat, and brakes to keep it from moving when she doesn’t want it to. Walkers and wheelchairs have come a long way in design and there’s one out there for every level of mobility.

Occupational therapists are so helpful when it comes to equipment for the things that need to be done every day. There are gadgets to help pull on socks, extend your reach, open jars, and button and zip garments. For people with low vision or blindness there are a lot of useful tools as well. There are special plates and flatware for food, clocks that speak the time and identifiers that can be placed on surfaces like the microwave control panel.

Seriously, these things work! Who uses them? Me.

Do you have a medical equipment store that you can visit? It’s a good practice to go there and look – at everything. You might not need it now but knowing what is available will make you feel very smart.

The world of equipment is large and varied. There is something for all ages and all situations. Some of it is mysterious (computers and smartphones) and even a bit controversial, like our Alexa (she’s always listening…). My husband loves this internet lady and asks her all kinds of questions. She plays any kind of music he wants and reads to him. And that brings up the equipment needed for safety too. Life alert buttons that are worn on the body can be lifesavers. And how about special locks for limiting access to doors and drawers? These can be useful for children and for elderly with dementia.

You get the idea? If you have a caretaking problem, take it to an internet search, a catalog, a medical supply store or a professional who can point you to equipment that will help. We need all the help equipment can give us.

Sunday Recess

I’m glad for a day off from A to Z postings because I have a few photos to share.

My walks last week were so reviving! Spring is on the way, in spite of Friday’s snowfall. Most of that has melted.

There are robins everywhere, hopping around.

It was 59 degrees warm one day!

And this is what spring in Wisconsin looks like.

Stay well and hopeful.

A to Z Challenge: Letter D for Depression

I can’t believe I made it through the first week of the challenge! I can’t believe I made it through three weeks of coronavirus sheltering in place! I’m thinking by now we all know a little more about what it feels like to be depressed…

Depression is one of the hallmarks of chronic conditions of any kind, and of long term caretaking. What an awful combination it can be when both of you – client and caretaker – are both depressed. Believe me, it happens.

I don’t know what your experience with depression is, but I’ve seen enough of it that I know not to discount anyone’s experience. I’m not genetically given to long term depression but I’ve had moments, maybe days, where I’ve been unable to help myself. Unable to find motivation to do anything. I can’t do anything but wait for something to change.

Depression is sometimes hard to recognize in myself, and hard to admit. It doesn’t present the kind of image I like to have of myself. Because I’m aware of how I’ve felt, I kind of know what to look for in others. Chronic disappointment, chronic pain, unrelenting fear/stress, and other critical situations can trigger depression -when we can’t be sure change will ever come, when we can’t find a resting place, or a safe person. Sometimes it’s not apparent what the cause might be.

If you are a caretaker, you need to know that failure to practice self care can lead to depression. It is okay for you to practice self-care. If you don’t you will eventually be unable to care for others.

You also need to know the symptoms of depression for those under your care. Parents (you are caretakers!!!) recognize the changes that signal depression in a child. Healthcare workers, make emotional health of your patients part of your observation and concern. Those caring for family members, where there is more likelihood of long-term disability should be particularly aware of the silence, the apathy, the resignation and behavior changes that suggest depression.

I can’t give you the sure-fire cure for depression. For some medication helps, and it seems to be one of the easiest attempts to solve the problem. Exercise, sunshine, music, distraction, the passage of time can all help, even if that help is only temporary.

There is one remedy that you as a caretaker can apply that will never hurt, and often is one of the best aides. You can be genuinely caring and show it by your willingness to listen, your words that express your concern, your notice of suffering, and your faithfulness to difficult situations.

The perfect message – hanging on the wall in one of the halls of our small hospital.

A to Z Challenge: Letter C for Clothing

Day 3 of posts on the theme of caregiving. Do you help someone get dressed in the morning? Truth is, I have trouble getting dressed most mornings. Yoga pants are the best, probably for doing yoga too, which I never do.

Let’s face it. Most of the time, for most people, clothing is a necessity of life. I’m thankful for that. But I know from personal experience that clothing can be a frustration as well. Clothing, done well, is a learned skill.

I’ve always bought clothes for my husband – he never thought he had time for shopping – but he always dressed himself fairly well. That is, until he started dealing with Lewy Body Dementia.

The first thing we learned was that pants with belts, snaps, buttons or zippers were not going to work. Putting the belt through all those loops was a frustrating chore. Those kinds of pants weren’t very comfortable for napping either. We learned that flexible, knit pants, elastic waists, and material that doesn’t drag on the bedsheets was our “go to” combination. We bought numerous pair of pajama pants at Walmart and he wears them everywhere. No one cares.

Pajama pants outnumber the others 5 to 3, plus the ones he’s wearing.

Ample sizing became the rule for everything from socks to underwear, because tight things are hard to put on. It’s so much easier to find the armholes of shirts and jackets when they have a loose fit. Again, clothing like that is easier to sleep in too.

I have learned the hard way that an important caretaking job is the final inspection before heading out. More times than I want to remember I have looked at the husband, often when we are late leaving for an appointment, and discovered some stain on his shirt front, his jacket buttoned up wrong, his fly unbuttoned, his pant legs caught in his socks, and hair/dandruff/stuff all over his shoulders. He’s mentally much better than he looks, but he doesn’t see the dishevelment because of his macular degeneration (and general disregard of propriety which he has always had). Fixing him up is a caretaking job.

Other thoughts on making clothes easy:

Have extra clean clothes along on any outing.

Slip on shoes.

Light weight shirt jackets – he loves the quilted, down ones.

When you find something that works well, buy two or three of them.

The same general rules of simplicity and sizing go for women too.

There are a lot of small, daily decisions to make in life. What to wear is one of those decisions that we have a lot of control over. I think we should not make it hard. There is a reason they put you in those awful gowns at the doctor’s office, and the hospital. That’s how they make it easy. Thankfully we don’t have to go that far, just sayin’…

A to Z Challenge: Letter B for Bodily Care

It’s Day 2 of the A to Z Challenge! Only 24 more posts to go on the theme of caregiving. When it comes to caring for bodies, don’t forget to take care of your own, fellow caregivers! Like the flight attendants tell us “put on your own oxygen mask first”…

I am a caregiver. I care for people when they can’t care for themselves. Since we all live in bodies, bodily care is pretty high on the list of things to do.

When I studied to become a nurse, I thought of bodily handicaps in a very superficial way. It was more about learning to do interesting procedures correctly, or knowing what external treatments would help in different situations. Working in hospice, and in elder care has given me a different perspective. I began to think of all the things I do for my own body, that gradually become difficult, then impossible, for some to do for themselves.

As a caretaker, I have clipped fingernails and toenails, given haircuts, tweezed eyebrows and chin hairs, scrubbed backs, wiped butts, picked food out of beards, rubbed lotion on dry parts and cleaned up every kind of bodily discharge there is. I’ve chosen clothing and dressed people, washed, blow dried and combed their hair and flossed and brushed their teeth. I’ve cleaned ears. I’ve helped people walk, sit, and lie down when they couldn’t make their bodies do those simple actions. And I’ve spent hours trying to help people be comfortable in their own bodies.

Haircut and beard trim day

Two questions serve as my starting points. The first, “Am I taking as much care with my client/family member’s body as I would with my own?” It’s kind of the “do unto others…” philosophy. And the second question is “Am I being sensitive to, and respectful of, their own ways of doing things?”

I have a whole different outlook on the world when I’m clean, comfortable, and well groomed. I like to look good – most people do. That desire is still there even when people are disabled, elderly, or sick. Helping them achieve those qualities helps them feel better, and heal better. It’s important work.

I am a caregiver.

A to Z Challenge: Letter A for Acceptance

Ever since “sheltering in place” and “social distancing” became the norm, writing has become difficult, more like work I can’t concentrate on. I’ve been worried that this year’s A to Z challenge would be hard, maybe unsuccessful, and probably not fun. Rather than give up, I will possibly write things that are a bit strange, just to make the 26 days easier, and maybe more fun. Fun is good and worth pursuing.

Way back in the dark ages I got married and left behind a good life and a good friend, my mom. We’ve remained close, but I’ve always told myself that I wanted more time, daily time, to renew that relationship and do life together again. When my dad died a few years ago and mom was alone, I started to think that it might be time. She was starting to want help in small ways, and I knew I wanted to be there, to give whatever care was needed in the future.

Mom and I

Meanwhile my husband, who thought he would work at his desk until the day he died, started not enjoying work as much as before. He struggled with some physical problems. He lacked energy and motivation. Retirement started looking good to him.

It took a long year of planning and hard work but in July of 2018, the retirement happened, our house in Florida was emptied and ready to sell, and we moved to Wisconsin to be near mom. A couple months later my husband was diagnosed with Lewy Body Dementia, which changed our lives significantly. I was suddenly thankful to be in a simpler living situation, near a supportive family group. Caregiving life had started.

The husband and I

Accepting caregiving as part of my life, something I chose to do, not a lifestyle forced on me, was key in helping me to be a satisfied, basically happy caregiver. Maybe it wasn’t as hard for me as for some because I had already been a parent (the ultimate caregiving opportunity) and chosen nursing for a good part of my working life.

Nevertheless, one of the most confusing things about caregiving has been the temptation to feel like my life has been “taken over” by the needs of someone else. I’m working at a job that, at times, feels like I have no choice. I’m trapped and have to do it. If I rebel, guilt can start to dictate to me. Nagging voices try to tell me what I “should be doing” if I’m a good mother/wife/daughter/family member. My thinking gets filled with those limiting words; trapped, forced, should do, have to, guilt.

But the truth is that I have a choice of how to respond to people in need. I could choose not to be a caregiver. There are options these days and not everyone is able to offer the same kind of caring. What I do know is that if I feel like a martyr, I won’t be as effective in the care I give and I also won’t be fun to be around. It can get toxic.

I believe there is a realistic way to look at the limitations of caregiving. Being married has limitations when compared to being single. Having children has limitations when compared to not having children. Some jobs are limiting when compared to other jobs. So it is with caregiving. There are days when I am tempted to think of fun things I could be doing, other than taking care of someone else. But, thinking about all those other options will probably rob me of opportunity to find value and fun in what I’ve chosen to do.

Caregiving, as a choice, has it’s hard times just like any other path, but IT IS MY LIFE. I’m accepting my choice. Instead of holding others responsible for my happiness, I’m going to use that energy to make this life as good as it can be. Acceptance makes that so much easier.

Am I alone here? When have you found yourself in a time consuming caregiving role? What limits were especially hard for you to accept? Can you tell me about it? Would you have moved NORTH for retirement?!

End of March

March is nearly over. I’m giving myself grace when it comes to doing all the things that could be called productive. It’s a little hard to concentrate so I go walking instead, alone most of the time. Even in this very unusual time, life goes on, and so, unfortunately, does death. In two separate instances, people I’ve known well enough to grieve over, have died. Neither had anything to do with corona virus, but were unexpected and shocking. These strange weeks/months will stand out in my memory for a long time.

My refuge is to walk in the woods and be reminded of how beautiful and special this world is and how it was designed to be a place where people could thrive. I see God’s intricate design everywhere – in the way the snow melts, the way some plants stay green and alive under the snow, the way the birds find their way back to their birthplace, the way everything responds to the sun in some way. God’s outdoor magic is medicine for my soul.

It looked like bubbles from the bath tub blown all over the meadow.
Ice hazards in some spots, but bare ground in others.
When the snow is gone, so is the path. The pink ribbons suggest the way, when you can find them.
Wintergreen, some with berries, alive and well.
Hepatica (mayflower) always first because of this head start.
Lakeview Loop, aptly named
I want to give this landmark tree a name but can’t quite decide.

P.S. The seeds went in today. I hope I haven’t done it too early. I couldn’t wait.

A to Z Challenge 2020: Theme Reveal

I don’t know how to categorize my topic. It’s about health, emotional, mental and physical. It’s often about family. It’s personal. It’s definitely about a particular lifestyle. It’s about caretaking.

Lots of us are caretakers these days. We care for our children with disabilities, our aging parents and family members with dementia. Some of us work in healthcare institutions and give care to patients of all ages and conditions. It’s a special calling, a special task.

This year I’m using the April A to Z Blogging Challenge to share my own experience, my stories, my thoughts and feelings about caretaking. I am a retired RN, retired in the sense that I’m not getting a regular paycheck, but I’m still learning and doing, in the field of caretaking.

I live with my husband, diagnosed with Lewy Body Dementia in 2018. I’m also across the yard from my mother, a courageous 87 year old, and within a short drive of my uncle and aunt, both in their 90’s. Like so many others these days, I have a friend and a dear sister-in-law who are fighting cancer. While not giving daily care to all of these people, I’m often involved with their needs and I do care.

I’m interested in hearing from others about their experiences, since I have already found that caretakers, as a group, have much to share and teach each other. These posts are an invitation to all who read to contribute and connect. The A to Z format doesn’t cover all possible topics of caretaking but serves as a starting place for discussion. Please join me this month as we explore being caretakers.

There is a moral task of caregiving, and that involves just being there with that person and being committed. When there is nothing that can be done, we have to be able to say, “Look, I’m with you in this experience. Right through to the end of it.” Dr. Arthur Kleinman

Yes, It’s Time for This!

People, the perfect thing to do while social distancing is planning your spring garden! At least, it’s one of the many perfect things. I am always super excited when I get in garden mode.

It reminds me to be hopeful. I have to wait for things to grow so it’s a futuristic activity and there is no better way to think about the future than to imagine myself out in the sunshine, digging in the soft, moist dirt and making all those straight rows of soon to be green stuff. Think birds singing, soft breezes, green grass (but not in the garden), blue sky, leaves on the trees. All that beauty that God wants us to enjoy.

And that is really the point of enjoying gardening for me. I feel like I’m worshipping God when I see and experience how crazy it is that a little pinpoint of a seed that I can hardly see grows into a carrot, or a bean. All he uses is water, light and dirt and a very smart self-sustaining program. God figured that out and those plants have been carrying out his plan ever since! Sometimes I think I get so used to seeing vegetables and fruits in the store that I forget that they are such high tech design.

Our retail stores were still open today, so I went for a quick trip to L&M where seeds were 40% off. I’m always conflicted when I see all the different kinds of every vegetable there is – they all look so good. I picked ones I thought would have the best chance of making it to full size before we get freezing weather again. Now I’m just going to sit and look at them for a few days, because they’re pretty – and the ground is still frozen.

In a few days I’ll start the tomatoes and a few others in starter soil – I’m going to use the plastic containers that I save from getting grocery store spinach. They make good little greenhouses. And I have some south windows where the seeds can get nice and warm and start to grow. I can hardly wait!

God likes gardening too – he planted a big one once. And he knew I would like it. Thank you, God.