Fighting Isolation: Caregiver’s World

January 26, 2023 Shirleyjdietz2 Comments

My husband is in the last stages of Lewy Body dementia and can no longer do anything for himself. He is in hospice care and he is at home where I am his main caregiver. This is my world.

One of the biggest changes for me after my husband’s stroke was accepting all the things I could no longer do. When he was still able to manage by himself, I could do music at church, volunteer with my favorite organizations, and meet with others for exercise. Since the stroke, and after bringing him home, I can’t leave unless I have a sitter to be with him. I have to prepare him ahead of time by giving his feedings and medications before I leave. I can’t be gone for more than three or four hours max – usually only two.

I started losing touch with my community and feeling isolated.

But now, after six weeks with my husband at home, I’m finding new, small ways to get involved that don’t overwhelm me or cause more stress. This week Mom has joined me and we are stuffing baby bottles. Yes, you read that right.

Every year, one of my favorite organizations, Northwoods New Life Resource Center, does a fund raising campaign. Plastic baby bottle banks are distributed, mostly through churches. People fill them with spare change, bills and checks and bring them back within a couple weeks. Last year I went to New Life Center and helped stuff instruction sheets in each bottle. This year Mom and I are doing it from home. It’s the perfect, low stress activity. I’m also able to do some chores, like washing donated clothing. I have frequent contact with others and get to be involved in a great cause. Volunteering from home, what an idea!

A big anti-isolation factor for me has also been learning to utilize the helpers I pay for and the ones that come with Hospice enrollment. My hired company gives me two morning hours and two evening hours each week day and every other weekend. Now that we know each other, my daily helpers let themselves in and tell me to get lost. I use the time to shop for groceries, pick up prescriptions and other odd errands, or I go over to spend dinner time with family. My Hospice volunteers give me a couple hours more in the middle of the day, once a week. I want to use this time to find out if I can still remember how to ski – it’s a bit sketchy…

Hospice has also been a blessing because of the number of people who come to us in an average week. The husband and I see the weekly volunteer, a nurse, a CNA, a chaplain, and a masseuse (she works on the caregiver too, yay!) We’ve gotten some good conversations and some new friends.

As hard as this time is for the husband and I, there is no sense in adding to the sadness by letting ourselves feel isolated. Separating from meaningful activity and caring community only hurts us. We don’t have to let that happen, and won’t.

Battling Winter, post #4

December 24, 2017December 24, 2017 Shirleyjdietz2 Comments

We battle winter in much the same way as southerners battle the long, sweltering summers – we move from one “air conditioned” space to another. The difference is that we condition our air to be warmer than the outdoors and southerners condition the air to be cooler than the outdoors.

The condo that Mom and I are in has some lovely air conditioning features. One is the heating system itself. It is hot water heat that circulates through the floor. I often put my feet down and feel the warmth of the floor, which makes everything feel warmer. Another wonderful warmth comes from the fireplace. When you have a chill, there is no nicer way to warm up than to back up close to a fireplace with a glowing fire. Modern fireplaces can heat up a whole room in no time at all.

Doing things

While I spend time in various warm spaces in Wisconsin, I find many of the same things to do that I do in Florida. However, I think it is true that there is more time spent doing quiet things. The short days, the darkness, the cold, all give me excuse to stay inside and eat, knit, read, eat, watch TV, do puzzles, talk on the phone, look at Facebook, cook, and work, of course. Mom and I do all these things, and while we do them we talk about All of these normal activities seem different when I look out the window and see the bare trees and a world white with snow. I am glad and content to be inside where it’s warm.

Being with People

Some of my favorite times here in Wisconsin turn out to be in the car with people I care about, taking them where they need to go. Winter driving hazards can make it difficult to travel. Places people need to go are often farther apart. There is safety in numbers. So, we get chances to spend time in the car, talking to each other. Last week it was an hour’s drive to Ashland with my aunt and uncle for a doctor appointment. I learned a lot about them during that time. Yesterday it was a drive to the hospital in Duluth with my sister in law for a radiation treatment. It was good just spending time together.

Thinking Right

In thinking about how I battle extremes of weather in the places I live, I’m coming to the conclusion that I had better do it mentally if I want to do it well. I need to set my mind to seeing the good, the beauty in my surroundings. I need to avoid isolation when it starts to make me uncomfortable. I need to be active when constant introspection starts to drive me crazy. I’m just sayin’ that the battle isn’t always taking place where you think it is.

What Anxiety Feels Like to Me

August 18, 2017 Shirleyjdietz1 Comment

Anxiety is real – be it mild and transitory or crippling and pervasive. I can no longer count the many sources of anxiety and depression in the world. They will touch everyone.

Nervous animated emoticon

It makes me feel frail. It’s as if my body knows some terrible thing that my mind doesn’t. My heartbeat feels irregular and fragile. My gut is very tied to my emotions and hurts, cramps, rumbles. I don’t know whether I’m hungry or sick but I’m tempted to eat to fill the gnawing in my stomach. Often eating makes it feel worse. I’m restless and on the lookout for some kind of relief even though I don’t know if it should be physical, mental or spiritual.

It’s not knowing what to do. It’s having too many choices with no idea which is most important, or having only one choice but having to wait to do it. It’s the waiting. How can I make waiting tolerable? Indecision is exhausting. I default to easy, time wasting activity thinking that it will calm me and help me feel more control over life. In reality, I end up feeling powerless. I accomplish nothing.

I become aware of my aloneness. No one knows I am feeling this way and I would not necessarily feel better telling of it. My situation is singular, and complex. I could not expect another person, with their different, singular and complex circumstances to understand mine. They are all busy.

If only I didn’t have to feel my heart pumping, physically moving my body with each pulse. It goes on a rampage with a string of fast, strong jerks. I’m a nurse. I know they are PVC’s, but they are nothing new to me. I want to close my eyes and feel sick for a while. Just let me feel sick. And then I realize that the faint nausea is the beginning of an uncontrollable heat that spreads through my body like a hormonal wildfire. That is not new to me either, but I have been unable to learn to like it. I endure it, thankful that it will pass.

What Helps Me Feel Better – Keeping Perspective

Sometimes I know the source of my anxiety. It’s a task that I just can’t seem to finish. I know I need to see it in a new way. Tackle it from a different direction. Or maybe just stop procrastinating. I pray for the clarity needed to deal with the troublesome matter. I pray for the strength needed to start working. Sometimes I decide to not “own” that task any longer. I decide it’s not worth it.

I often ask for some small reassurance that I am not alone. I review who I am, whose I am and that I do not have to have control over anything to be at peace. I remind myself that my body and mind will work together to care for themselves if I do what I can to not interfere with them. Whatever the root of my anxiety, I consider the “worst case scenario” and whether the outcome will matter in the long run. Often, when I have no choice in outcome, I have a choice in my own response to it. I can think about how to be consistent with my faith and my core principles.

Today I remembered exercise. It’s often the last, hardest thing I want to do, but the memory of feeling better afterwards draws me. When my body is moving, my mind orders itself more efficiently. Having a physical reason for being tired helps me relax. There is not as much pressure to decide what to do next. I’ve changed the mix of hormones and burned off some of the anxious feelings.

I practice gratitude. I thank God for relative safety, food, shelter, clothing. I thank him for letting me know that this world and everything in it is a temporary environment. Everything changes, sooner or later. My circumstances change. My feelings change. That too is God’s doing, so I thank him for the passage of time.

It helps me understand myself better to know that God made me able to feel anxiety, and he knew it would be my experience. That’s why he said that there is a way to “cast it” on him. The more I learn about him, the easier that becomes. (I Peter 5:7, the Holy Bible)

Sitting in it…

March 13, 2016 Shirleyjdietz6 Comments

Today in church was awkward. Not that it hasn’t been before. I often am hit with this feeling of being an invisible sponge-like being, hoping to pick up on whatever God has for me, whatever I have asked him for. I have friends there, good friends actually, but I’m gone frequently and nobody really knows if/where I belong in the faith community.

I appreciate being able to sing, to listen, to enjoy church in a way that leaves me free of feeling critical, disappointed and upset. I go to a good church. But, wow, when I feel awkward it’s difficult. I question my presence there. I feel alone. Isolated. It’s so easy to sing the last song, pick up my stuff, and be gone. No one stops me.

God stops me. I can’t get past the part where “the church” is a major player in the story. SHE’S THE BRIDE AT THE WEDDING (excuse the all caps). I must not only try to identify with her, I must try to be her. I have a clear picture of what that “church” means – it’s not a denomination, a particular group, a specific behavior or costume. But it’s real. I find evidence of it across the board, in different cultures, in unlikely places, at odd times, the invisible church is there. identified by mutual love of Jesus (THE GROOM, excuse the all caps).

Anyway, today being one of the awkward days, I sat in it. I know the devil (who wants to be a major player but doesn’t get to) would have me feel estranged in that environment and to wallow in the feeling and draw conclusions from it. Feeling awkward is not fatal. It can happen to me and I survive. I can fight back and seek out someone else who looks awkward and persist in conversation with them until we’ve both felt included in something bigger than ourselves. We’ve made small steps toward community.

I give the “feeling” of discomfort up to God, who reminds me that feelings are fickle. Next week I might feel incredibly part of it all, connected to everyone. Church is complicated. Church is necessary. Church is part of a bigger plan and I don’t always “get it”. But I will sit here, learning, until I do. But today was awkward, just sayin’…