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Spouse or Partner Caregiver Forum
Advice for all
I posted this in another thread but it bears repeating.
No one absolutely No One is entitled to a personal care taker
print it out in big letters and put it on the wall
you EARN a caretaker by being easy to take care of.
DW was a wonderful physician, wife, and mother. She was VERY used to
having her own way. She was a senior Medical research executive and I
ran the house.
But I had to tell her on more than one occasion that her behavior was
totally unacceptable (yes I know it was due to the disease.)
Stress kills caretakers.
I got help in the house so I could have a reasonable professional
conversation on the phone and run errands where I could not take her.
She did not like it but I absolutely insisted
She became psychotic(delusional) and also started wandering. My
health was deteriorating So she was placed in MC 18 months ago.
I visit every day. I love her very much but she is safe there.
No guilt ever
Oh wow! 18 months ago! It seems like it was only a few months since I read that post. Strange how time can seem to move so slowly and so quickly at the same time.
Hang in there! Your strength gives me strength!
Ah; my LOs would have loved to have EARNED their care; but my LOs brain were dreadfully taken over by dementia and through no fault whatsoever, the behaviors were over the moon much of the time.
LO couldn't help it, not able to control it, not able to "earn" it; but care was provided.
Awful to think of a LO having to "earn" their care; perhaps there is a better way to put it.
Guilt? In my mind that only comes when I know I have done something willingly that I know I should not have.
My husband died at home but I certainly knew that it was possible that that would not be possible for many reasons and had plans B and C in place.
So many factors come into play....money, safety, ability to physically take care of someone, quality of care (it is not unheard of that a loved one does better in a social setting).
Each of us makes our way through these considerations and comes up with the best answer and hopefully in the end see it as having made the right one. Yes?
I respectfully differ with those who feel that they have to kill themselves for another human being.
This is a horrible disease. family caretakers are well meaning amateurs. If it works and its safe , no problem. I did it for 5 1/2 years. But stress kills caretakers and then the LO is left alone anyway.
In my opinion, we all do the best we can for as long as we can. We are all different as people. We have different personalities, different tolerance levels, different coping skills, different expectations of ourselves, different life commitments, different levels of family support, different financial concerns and resources, different available care resources. I could go on and on.
Some people are naturally better as caregivers. I do NOT put myself in this category.
My DH progressed from MCI to mid stage 6 over the last 6.5 to 7 years. He needs assistance with all ADL’s and total management. After being a 24/7 care giver for the last two years, doing everything to keep our home and our lives from crashing, I started in home respite care four weeks ago. Right now, my care aide comes in two times a week for 2 hours per visit and keeps my DH company while I try to enjoy some “me time”. Guilt was originally there but I finally realized and accepted that I could not continue doing everything by myself. As the disease progresses, my DH and I will need more assistance. Eventually, I will not be able to provide the care he needs and deserves.
I KNOW I will not be able to provide the personal care for my DH, that so many of you do for your LOs.
I am disabled, walk with a walker, have almost no sense of balance, do not drive now, cannot do laundry, etc. My DH, 80, is in the MCD of his 'condition'. My DH's sister, who is 10 years older, was at this stage at 80, and now at 90 she is completely disabled and in MC. This horrible disease (which ever one, they're all horrible) runs in his family. I use this forum to give me strength, information and perspective. You are wonderful.
We do have 6 years of LTC coverage, and I pray that is enough. Before the time comes, if it comes, for Assisted Living/MC, I will find a CELA and do my research, so that we are not financially destroyed by AL/MC beyond the six years of coverage.
We are not even upper middle class in our assets, so great care must be taken to negotiate care for both of us. My son is a doctor, and his wife a OT who works with the elderly and has extensive knowledge of the medical community where we live. I hope we won't be a 'burden' to them, and will include them in our decision making.
But I will not be able to provide home care by myself. In fact, I may need it myself.
Merde! I wrote a long post and it disappeared. Twice!
I'll try again. Here it goes. An edited shorter version. .....
I took care of my immortal beloved, may he rest in peace, at home for 10+yrs. I became his "personal care-taker". But I was not totally alone in being his "personal" care-taker. I had a well coordinated support system. From beginning to end. And I followed Best Practices.
Support, in all fronts, is imperative for the survival of any care-taker.
To minimize stress. To survive the oftentimes overwhelming grueling process of care-giving, caretakers need a "couple"of almighty dollars. They need to be in good physical and mental health. And they need to get some well-deserved R&R. To provide good care, care-takers need, as well, aid from a loving supportive family. The help from faithful friends. Excellent medical and social services in the village. They need the commitment of the nation to provide for the well-being and care of its people. Yep. It takes a caring-supportive-compassionate community to provide good care. It cannot be done alone.
Herr Crushed, it never, never, never entered my mind that that human being existing at the end of his life with a broken Alzheimer's brain had to "earn" my personal care. My goodness. I chose to do it, freely, after having a clear understanding of our situation and considering all the facts. Yes. I was clear-headed about the choices I made. And I took responsibility for all my choices. I was not a saint. I was not a martyr. I was not a fool. Yes, I am an amateur. A perfectly imperfect care-taker. Without a PhD in care-giving. And I might be a slow learner. But I learnt my lessons well. And, like everyone here, I did my best to perform all my duties and responsibilities.
My immortal beloved was a good man. Warts and all... In my books, he was"entitled" to good personal care. Either at home or in an institution.
Yes. I count my blessings... I survived.
Some folks seem to have a very narrow definition of "earn"
You "earn" a personal caretaker by
1) not being a threat to the caretaker's physical or mental health
2) within your cognitive ability reducing the stress on your caretaker
3) not endangering your spouse's financial well being in terms of their own health and future. That means signing DPOAs etc.
That's all it takes.
If you refuse help in the house, refuse to give up your guns or or refuse to stop driving when your spouse says so you are declining a personal caretaker. If you insist on wasting money you are declining a personal caretaker. If you are "willingly" abusive you are declining a personal caretaker. If you hit or otherwise threaten your caretaker you are declining a personal caretaker
This is a horrible disease. We do the best we can as long as we can. But it does no good to anyone to die in the process.
Thank you, Herr Crushed, for the broader definition. For your clarification(s). For your example(s). It is a better way of putting it.
Phew! None of your examples applied to my experience with my immortal beloved. We did not have guns in our house. Early in the dx, we sold our car as a precaution. There was no wasted money. There was no physical threat. And all our legal papers were in order.
Well, uncovering the tracks, I would say that he did say a few nasty words to me. He gave me a few dirty, dirty gestures and looks. And, a few times he dashed out of the nest, FREEDOM!, to get away from the "boss" lady. His wandering was my main problem and for that I was able to take all the necessary steps to keep him safe.
He felt sad, confused, lost, anxious, panicky. And he cried. I had to work hard to help him in all those fronts. He died while living with some of the symptoms of so-called mid-late stage 6.
My immortal beloved earned a personal caretaker as a result of his good effort(s). The last word he wrote, it was the word TRYING. He tried hard for 10+ yrs to be a good demented man.
Sudden cardiac death, came knocking at the door. Family history of heart problems.
Oh! How I love him to the beyond beyond and back...
Merde! It all sucks.
I have not responded to any posts for a long long time for reasons that do not matter.
My DH has declined these last 6 years to a point that my health was beginning to decline. The constant 24/7 has been very taxing on my health in spite of our children helping all they could.
I have had to place my husband in MC this past week. It is the hardest thing I have ever had to do, and yet I know that it is the only thing I can do.
It has been necessary to leave him there alone without visiting him for a couple of weeks so that he can settle into his new surroundings. I will miss seeing him this Sunday especially because it is our 58th Anniversary. I know that I would Boo-Hoo, and that would not be good for him.
We each face similar challenges in this hard trial. Our personalities are not all alike and so we look at things differently. I have appreciated learning from each of you.
Thanks for listening as I need to talk to someone right now who understands.
It is the hardest thing I have ever had to do, and yet I know that it is the only thing I can do.
OK instead of a narrow definition of Hard perhaps some have a different definition of EASY.
Caretaking is always incredibly hard and dangerous work. Everyone here knows that . But any job can be made harder or easier. its a relative, not an absolute term