Inspiration

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!

–Charles


Dear Chuck,

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.  

First, (CAREGIVING)
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:

  1. I go daily to spoon feed my wife. she is too angry to have anyone else do it but me
  2. 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.
  3. She will not Brush her teeth for the caregivers or me.
  4. 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.  

  1. We are trying different medications for anger management but to no avail at this time?
  2. 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.?

Second, (LONELINESS)

  1. 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?

  1. 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?
  2. 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?
  3. 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?
  1. 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,

  1. “Get a life, you need to go out and socialize more and mingle with other people.”
  2. “Go on a cruise, or take a vacation, treat yourself to something.”
  3. “Go out to eat more often, go to the movies; stay active?
  4.   “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

(Ron died of a massive coronary shortly after sending this letter.)

Editor’s Note:
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.

22 COMMENTS

  1. Heart wrenching….
    This is so sad, yet, so typically the situation with loved ones that struggle with advanced dementia. What is even more devastating is the lack of support caregivers and the elderly have from funding sources, the community, and the general public. Don’t even get me started…you know I worked in geriatrics for over 2 decades. So many gaps in the system that there are not enough hours in the day to list.

    • Dear NH, i am not so sure there is much difference between what we do to those so afflicted as there is much difference in what we do to the unwanted, unborn babies in a politically driven society. Please God, help us to show mercy to all men and to the helpless among us. Bless you my dear friend, Chaz

  2. Dear NH, it is more than sad, it is a disgrace to the American People. We have those in our society that could be called “The forgotten ones?” Or “the UNWANTED elements of our citizenry, The very poor, the homeless, and those suffering from dementia. Nazi Germany adopted a system, it was called, “The Final Solution” wherein they eliminated those that had “no purpose” Or, were what they called, “Non-human’s.” or, ‘undesirables. Are we any different? Back in the forties lobotomies were performed on tens of thousands of unruly or uncontrollable citizens in the united states. A classic example was what Joe Kennedy Sr. did to his beautiful daughter, Rose. He had her lobotomized and then institutionalized for the rest of her life because she was what he considered A Disgrace. Please, dear God, forgive us for what we do! A friend.

    • Dear Friend, I really believe that most folks in this grand old country of ours really do care. Sometimes they just don’t know what to do or say. I guess when we see the opportunity to encourage it is for us to give love and hope isn’t it? Chaz

  3. Charles,
    There are no words to share what I feel after reading this letter. The effort to provide care for any disabled person, whether physical or mental or emotional, is so hard, especially a loved one that doesn’t even recognize you. God’s love for these situations is all that can sustain the caregiver and allowing us to continue day by day. It is so good to know we have eternity with our loved ones and our Messiah… I think that is how we survive the battle.

  4. Mark Spurling, Dear brother and friend, your comment is right on target. I can’t imagine what it would be like if we couldn’t reach out to our merciful friend on a regular basis. As we call upon our loving God He endows us with a special amount of sustaining grace. Bless you and yours, Chaz

  5. EJ, What it does as a side effect is, only as and if we are willing, is draw us closer to the life giver. Every day in the caregiver’s life is a challenge in which we learn to be more gracious and hopefully more like Him. Bless you and yours my friend, Chaz

  6. WOW!
    What memories this article brings back to me!! I’ve been through this with several family members and difficult as it was, I am glad I had the health and energy to go often and do what I was able to do. The hardest part was the financial burden and hearing my loved one ask to come home with me, knowing it would never happen again. It was so sad!!
    I thank God for seeing me through it…every minute with each one of them! I am so grateful to say that each and every one of them went home to be with the Lord and I know I will see them again!!
    That is what got me through it all, the fact that they are all waiting healthy, whole and happy…for me, when it is my turn! Praise God!

  7. AHH, DEAR CSG, YOU ARE ONE OF our UNSUNG HEROES that persevere in well doing, not for any reward that you might receive but because it is the thing to do. Bless you dear sainted friend, Chaz

  8. The only consolation that I can think of is that the individual lost in the fog of Ahlzeimer’s is oblivious to his/her diminished abilities – but what a tragic loss for the one providing care. I am so sorry.

  9. Dear Judith, this enduring is at times almost a pain onto death. I remember once not long ago driving down a road and looking into a home seeing a family celebrating Christmas together. I had been to the nursing home to visit Nancy and was on my way home and was almost overwhelmed with loneliness. Pray for our caregivers. Without Papa God’s magnificent love it would be too heavy, because most people don’t have a clue what caregivers endure, Chaz

  10. Yes Mike, A tad more reality than most of us want to face on a bright, sunny Florida morning but it is life and we have hope.. I am so happy that we have a loving God that is always with us to comfort and hold us. He is so very good to us isn’t he. All we can do is keep looking up. We have heard the old saying, “Tie a knot in the end of the rope and hang on!” Bless you dear folks, Chaz

  11. This brought up so many memories, but the one I still have to try to overcome is being lonely. The only answer I have is to pray a lot and remember that we will see our loved ones again, in a far better place!

  12. Don Young, my dear friend and brother in Jesus, when the “lonely” bug bites it seems to be intent on nibbling us, if not to death, then to a helpless state of unreasonable dementia. (Is there such a thing as REASONABLE dementia?) The sad thing is that when we need to hear another’s loving voice the only thing that greets us is a cruel silence, or the sinister, demeaning laughter of demons. I have found that prayer does help, and more than prayer, praise. This almost seems unreasonable except for the fact that Jesus has walked the path before us. As I reach out to love, I receive love! Isn’t that wonderful? Chaz

  13. True story Desr Charles … It’s Tough and Rough but even do caregivers got all qualities to ‘relief’ the disease and pain … You’re THE ONE Charles !!! But … Pray for Caregivers ’cause they charge part of the disease with them … GOD Bless You

  14. Leo, my brother, Thanks pal. One thing I am sure of is that with friends like you praying for me I can’t lose. Bless you, Charlitos

  15. Reading Ron’s letter was so very powerful, the feelings, the memories, the pain everything was there. Caregiver is a job that is thrust upon a vast majority of the people that hold it! Few choose the position and those that do deserve sainthood, but for most it is a final duty, an obligation of love, a thankless role that they find themselves forced to play! As life goes on all around them, they are trapped in a downward spiral and usually alone! Friends and family may mean well but they have their own obligations and often don’t have the time or take the time to help or understand. They are not mean, they are simply caught up in their own circumstances. Having said that it stands that help for the caregiver must come from a different source, one’s faith, and from God himself, who truly understands and is willing to help and wants to help. As a final thought about Ron, in the last line of your article you mention that he died and I find that there is a part of my soul that is happy for him and the peace he finally got!

  16. Dear A Friend, Are you really comparing Nazi programmed genocide to the way the disadvantaged are treated in today’s society? Today’s indifference is caused by greed and total self interest and a practiced ignorance of the plight of others. For untold years the evil one has worked hard to destroy the family and it appears he has had a lot of success because we care more about hurting someone’s feelings than we do about people freezing to death and going to bed hungry because that would cost money and effort! Who was it that told us to love one another?

  17. Richard my dear friend, truer words were never put on paper. Everything you have expressed touches to the core of the matter, especially Ron’s passing. I am not afraid of death, because even though I enjoy life so much, as the word says, “I shall fear no evil.” I have been living in close proximity to that mean spirited black cloaked figure too darned long, but it is alright because just there, on the other side of the veil is eternal relief, praise God from whom all blessings flow, Chaz

  18. A Friend, Please tell me you do not equate the treatment of “the unwanted”in this country with the planned, systematic, genocidal policies of Nazi Germany! Here it is the result of greed and a feeling of general entitlement, an all consuming self interest that causes people to scorn the elderly, the infirm and the disadvantaged! It is more important to say the correct thing lest you offend someone than it is to do something that may cause you inconvenience or cost you money! The evil one has spent decades destroying the family unit and sadly he has met with a good deal of success! More than a few people view human life as an inconvenience. We need to replace platitudes with action and as we are admonished to do, to live one another!

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