Thoughts of a Caregiver
Our lives contain many twists and turns. We start life confused, go through some times when the path ahead appears to be clear, and then move in and out of confusion again and again.
My husband, Frank, has been in my life for over fifty years. Through out this time we have been best friends; we’ve shared school, parenthood, moves across the country, and spiritual journeys.
Today we are sharing a different type of journey. A couple of years ago he was diagnosed with Alzheimer’s disease – something neither of us had anticipated.
Looking back I can see that the symptoms were present prior to that, just not recognized.
An early symptom of his, that I had no idea was related to dementia, had to do with difficulty walking. He would move across the room to the dining room table and just stop a few steps away from a chair. When I would ask him about it his response was that he was trying to get his legs to move.
We have since learned that ataxia (lack of coordination of voluntary muscle movements) was indeed a sign that brain cells had started to die.
One of the first, and most difficult concepts a caregiver has to accept, is that there are permanent, physical changes to your loved one. You can’t see the dead areas of the brain, but you experience the effects of the dead cells.
Your loved one’s behaviors change. He or she can no longer participate in complex conversations. Decisions you used to make together have become yours to make alone.
It’s difficult to share what is happening with others – family members and friends especially. On the surface your loved ones look the same. They can participate in chit chat. They may occasionally have a verbal outburst when they get frustrated. But to someone who sees them sporadically for short periods of time they don’t appear to have changed.
The caregiver knows the person has changed yet doesn’t have the vocabulary to describe the changes. You know this is just the beginning of a lengthy journey. Your loved one will gradually be able to do less and less for himself. The time will come when he can’t be left alone, even for a few minutes or an hour or two.
* * * * *
As I looked back over what I had written I realized that I started with a personal story. Then I shifted to a less personal description of the disease.
Why?
It’s easier to talk about/write about facts and behaviors than it is to share feelings.
I started with enough of my story to draw you in, to show you why the topic is important to me.
If my goal was to inform people about the disease this was a good solid beginning.
However, in this series of articles I have been writing about the impact fear has on our lives and decision-making. I stopped short of that. I took the easy way out.
So, now to look at some of my fears.
I have never lived alone, made decisions totally on my own. I moved from my parents’ home, to a shared college dorm room, to a shared home with my husband and later two sons who are now grown men living their own lives.
My
best friend can’t carry on the same types of conversations any more. Yet he can still appreciate a good joke.
He asks what words mean that used to be part of his every day vocabulary. He finds it easier to watch reruns of old shows on tv than to figure out the relationships in a brand new one. He asks several times in a half hour “This is Thursday (substitute any other day), isn’t it?” Sometimes it is, sometimes it isn’t.
I know from a support group I am in that he will eventually lose the ability to talk.
But when? Will it be months? Or years? Many people live 10-12 years after diagnosis, gradually declining until they need total care.
How do I plan for our future? The time will come when I can no longer leave him alone. Will we have the resources to bring in a home health worker so I can leave the house for a few hours? Will I outlive my husband’s illness?
These are some of the fears that float through my mind these days.
My current solutions involve living one day at a time. Shed a few tears with a good book or Hallmark movie. Then wipe my eyes. Take a deep breath. Thank God for the good things we do have. And trust that our future needs will be met in the future.
Do you have a family member with a chronic disease? Are you now or do you anticipate becoming a caregiver in the future?
Any time is a good time to start a journal, or perhaps two or three. Make note of all the fun and special things that you do with your loved one to cherish and look over in the future. Keep track of any changes in their behavior.
And most of all, create a safe space to write out your feelings – good and bad. Don’t fight the grief and frustrations. Feel the feelings as they flow through you.
Fears have the most power when they are swirling around in your mind. Putting them down on paper, sharing them with a close friend, family member, or counselor will enable you step back and be open to seeing solutions.
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