By Charles Towne
What follows is a letter I just received and it poses the question, “What is one to do?” Ron’s letter is full of pain, a very loud cry for help. What is wrong with family? Sure, so they don’t know what to do, or what to say, but is that a reason to do or say NOTHING? If you know a caregiver please reach out to that person, you might save that individual’s life!
Following are some of my thoughts and concerns for Alzheimer’s caregivers that I have as I look through my somewhat biased glasses. I shall break it down into my four areas of concern.
Not all care giving situations are the same but none are easy, in fact, caregiving is a huge sacrifice for all of us.
My situation is as follows:
- I go daily to spoon feed my wife. she is too angry to have anyone else do it but me
- She does not want to get up for the nurses in the morning for breakfast s but she will get up reluctantly for me. By the grace of GOD she will get up for me most of the time.
- She will not Brush her teeth for the caregivers or me.
- She will not let anyone wash her hair anymore. Now I am trying waterless shampoo but that is iffy due to the fact that she doesn’t like for anyone to touch her.
5 It is a real battle to try to get her up in the morning and get washed. She Kicks, screams, and gets very physical and abusive. She sometimes will bite and scratch in order to get away. To clean her privates is very difficult and time consuming because she fights you and will not cooperate at all.
- We are trying different medications for anger management but to no avail at this time?
- Even with her in an Alzheimer’s nursing home the above conditions demand for me to be there almost all of the time. I thank God for being my strength and support and enabling me to do my best.?
- Our house used to be a HOME, filled with many busy and fun activities, Birthdays, Christmas, etc. Now it is empty and lonely. Hardly anyone comes over anymore.
We have six children, and twenty three grandchildren. By those numbers our house once was really alive, and bustling and full of laughter.
Oh, the children try to visit my wife in the nursing home occasionally, (nice of them.) I am very lonely?
2. With this disease you find out who your friends are. Many so-called “friends” have said, “Oh we will come and visit you!” or, “We will go out for breakfast sometime!” or, “We will go and visit your wife at the nursing home.” Etc. I will never understand why people say things they never intend to follow thru on or mean. Oh well people are funny, aren’t they? One can tell real quick which friends are Fake, and who is Real?
Third, (HELPLESS FEELINGS)
This disease has been a real lesson in thinking about control in our lives. and the effect it has on us?
- It has been said, “WE WORRY 90% OF THE TIME OVER THINGS WHICH WE ONLY HAVE 10% CONTROL OF?” I finally realize I now have a lot less than the 10% control?
- Bathing, brushing teeth, hair care, personal hygiene, changing clothes, and depends, etc. are just a few things that you feel so helpless in trying to do for your loved one?
- Medications are an ongoing battle in trying to find something that works for anger management, depression, etc. Also, many medications cause urinary and bladder infection?
- Any exercise or activity is also an impossible feat to get her to do or get involved in.
5. My wife is 69 years old and she has the deck stacked against her. I feel so helpless in making anything better for her. It’s a gut-wrenching feeling.
Fourth and last, (ADVICE TO CAREGIVERS???) Some good and some not so good.
Many people often offer advice. The advice in taking care of yourself first and how to cope with your dilemma?
I am always somewhat baffled when it comes to figuring out how people think that things are, below are some examples,
- “Get a life, you need to go out and socialize more and mingle with other people.”
- “Go on a cruise, or take a vacation, treat yourself to something.”
- “Go out to eat more often, go to the movies; stay active?
- “Don’t you have children to help?” Yes, we have six children. However we are in a new generation now, (most of us in our generation are screwed) here is why I say this?
All our children are working including their spouses, living the American dream! Their children, (my grandchildren) are involved in a ton of activities, which they sign up for a minimum of ten each I think, hence the parents are running the roads twenty-four seven. They don’t have time for their parents and in some cases GOD either, because wrestling or soccer practice or God only knows what else, is on Sunday mornings hence no church. PARENTS ARE PUT ON THE BACK BURNER?
All the above helpful advice has some merit I am sure but, it costs money to do any of the above. My wife, my sweetheart, the love of my life, is in an Alzheimer’s nursing home, cost $4,150 a month, plus $300.00 to $950,00 a month because of Medicare prescription doughnut hole? We live 35 miles one way to the facility, round trip 70 miles daily, plus Depends, wipes, toiletries, etc. HOW IN THE HOLY HOCKEY STICKS AM I ABLE TO AFFORD ANY OF THE ABOVE VACATIONS, CRUISES, AND GAMBLING? (Well folks, you just don’t)
All that may seem like good advice but it’s just not practical when you are fighting for every nickel.
Chuck, I hope this is some help to someone. I am praying for you brother
(Ron died of a massive coronary shortly after sending this letter.)
Please watch for more articles taken from Charles Towne’s soon to be published book on caregiving, “WHO CARES?” The book is based on his years of caring for “my darling, my Alzheimer’s afflicted wife Nancy.”
–Bless you and yours, Charles Towne
Charles Towne is first and foremost a Christian. An octogenarian, author, journalist, wildlife photographer, naturalist, caregiver, and survivor, his life has been and continues to be, a never-ending adventure filled with possibilities never imagined. He has adopted the philosophy that to Live fully, laugh uproariously, love passionately, and learn like there is no tomorrow, is a formula for a long and joy-filled life.