Hope-aholic

Interesting concept.

Watching the early morning newsy shows yesterday a guest mentioned this concept. The word stuck with me because I think all care partners are just that – HOPE-aholics.

Hopeful the incontinence will be less or gone.

Hopeful the memories will not completely fade.

Hopeful that she will be less anxious in the evening.

Hopeful that she will think she is home at night.

Hopeful she will sleep peacefully overnight.

Hopeful she will walk better with her left side.

Hopeful she will do her speech exercises.

Hopeful she will remember who I am during the day and into the night.

Hopeful she will not be afraid of what is to come.

Hopeful, always hopeful, she will be fine with staying in a respite situation while I travel to visit my sister.

Hopeful that I will not be anxious while away.

Hopeful that she will eat more.

Hopeful that she will not lose more weight.

Hopeful that visitors will make her days busy while I visit my sister.

Carpe hopeful Diem.

Time for a Change

One of my favorite words is Luddite. It is a pejorative. Luddites are resistant to technology and change. Buddhism and Hinduism share the doctrine of Anicca or Anitya, that is “nothing lasts, everything is in constant state of change”. Imagine a Buddhist Luddite. There is a guy with a serious mental health issue.

Difficulties of life while supporting a person with any sort of chronic disease tempers one’s world view. I have come to decide that change in perspective is necessary for a healthy mind, a calm mind, a sane mind.

I have decided to make three changes in my day that I hope will adjust my personal perspective. In the morning spend an hour writing. It is quiet. Use the time wisely. In the morning spend fifteen minutes doing some exercise. In the evening read for an hour. Stephen King has a new book.

I do some of this currently. Generally I read for an hour or so before I go to bed but after I help Cheryl to bed. It is quiet in the late evening. Cheryl usually needs time to settle down. If I go to bed at the same time as her I tend to lie awake listening to her squirm and rub and pat the bed and generally fidget. Often while reading I find myself listening carefully to hear if she is moving. If this happens I realize that whatever reading material I have is not holding my interest and attention. It is time to sleep.

For awhile in the morning during the early summer I had a series of chair yoga (old out of shape people yoga) exercises that I did in the morning. The whole series took about 15 – 20 minutes. Somewhere in June I lost interest and quit but exercise is boring and doing exercise because someone told you it is good for you is uninspiring. I do not simply believe ideas that others expound. I look for some validity elsewhere first. Perhaps I need to mix it up and find my groove. I am still working on that aspect of it.

Write in the morning during the early hours while Cheryl is still sleeping. Make it a routine and perhaps I can finish my book. My it a routine and perhaps I can inspire myself. I have started three different book ideas. I have to select one and push it.

A fourth thing not mentioned above is go back to working with students in the program I am involved with at a local community college. It is a fact that communication with others without dementia can be a relief from the miscommunication that occurs in our every day life. Four hours is about long enough for me relax and not think about Cheryl. It is a break. I think I need that.

It is later in the year. The sun goes down earlier in the day. Cheryl’s brain wanders off into some odd places when it is winter gloomy outside. Our condominium is one the first floor of a two story building. We are in the back and the windows face east with a view of an overgrown woods. It can be a bleak landscape view in the winter. In the summer it fills in close enough that there is no view of the sunrise. Garages line the front so that there is no view to the front and the typically magnificent sunsets we can view from our hilltop. But it is a one floor plan which is perfect for Cheryl and her bad knees. it is, however, dark in the winter and on a cloudy summer day much like viewing the world through cataracts.

And there you have it, my first morning of writing and thinking.

Carpe Diem.

More on Expectations

I did not mention previously that I have greater expectations of myself than anyone else around us. I tend to focus inward and make all things that go badly my fault.

Fault is something that a catholic education will drill into you. Recognizing that humans are weak in many ways is something catholic education ignores.

“… And if you should fail in this, humble yourself, make a new proposition, get up and continue on your way.” (Padre Pio)

I am feeling disappointment in myself today.

Carpe Diem

I Expect Too Much

I do.

I expect Cheryl to do things that she is incapable of and respond with anger when she cannot. My anger is better described as frustration. As I leave her thinking she is headed in the right direction, when I check on her later, I find that she has wandered off in some new direction. Instead of washing her face, she is cleaning the sink.

I expect others or hope that others will see our dilemma and voluntarily help in some way. Those people who do are very few in number. They are a joy to be around.

I do not expect anything from strangers but they open doors or hold the door or jump up to open the door. It is a small thing but useful.

Friends and family are all helpful in their own way. They all have lives. They all have other interests. It is self centered of me to expect them to think about us.

As we travel this road of Parkinson and related dementia changing expectations is necessary. If you do not make adjustments all that can be found is perpetual disappointment.

Perpetual disappointment leads to cynicism. Conversation becomes sarcastic. The sarcasm is wasted on dementia patients. They will only detect the underlying anger.

Cheryl uses her left side successfully only when she concentrates. Perhaps specific marching encouragement will help – left foot, right foot, left foot, and on.

If I change my expectation for her walking, perhaps I can help her improve.

If I change my expectations of family and friends perhaps I can find more happiness and less disappointment.

Perhaps I need to change my expectations.

Carpe Diem.