I am a FT CG for my 86 yr old mother who suffered cardiac arrest in 2003 resulting in a dementia-like brain injury. For 16 or so years, mom lived by herself with help, by two of my siblings, several times weekly. Doctors said mom would one day take a speedy and deep dive into Alzheimer-type dementia and exactly that happened this past fall. Mom has all the Alzheimer's symptoms and we notice continuing, horrifying, declines almost daily.
Mom will not get out of bed in the morning. I make sure she eats correctly (diabetes & obesity considerations), gets daily exercise inside & outside, doesn’t take long daytime naps, goes to bed at a reasonable time, between 8:30-9p (changing Depends & into PJs can take up to an hour so I usually start the bedtime routine at 8p), regularly talk with her doctor about medication symptoms & complications, and take her on outings 3-4 times a week (she likes to go window shopping and she can sometimes use a cane/walker but more and more she needs her wheelchair).
I start waking mom up at 7:30a by walking in her room, turning on the light, saying a happy “Good Morning”, opening her drapes, and adding something like,”It’s a beautiful morning.” Mom will respond in like manner. I say it’s time to “arise & shine”, using lots of the statements she used on me and my siblings so many years ago. Mom says she’s getting up and then doesn’t move a muscle. I tell her I’ll be back in a minute to help her while she gets the nighttime out of eyes. Couple minutes later, mom hasn’t moved. I continue to use positive and requesting statements, mom doesn’t respond. I give her a couple more minutes and I try again... no movement. I’m totally ignored. I do this for 30 minutes or so. Next, I say, “Mom, it would be nice if you got up now so you don’t make a mess on your bed.” (Mom wears Depends, nighttime extra absorbency, and has almost nightly accidents). I even go so far as to say she can go back to bed if she would only get up and change her Depends, which I call underwear. Nope, doesn’t work. Mom says yesterday she doesn’t care if she has accidents. Then she starts cussing at me. As always, I ask her to treat me with the same respect I treat her... she doesn’t. After an hour and a half of enticing her to get out of bed, I say I’m going to call my oldest brother and she can talk to him about getting up. More cussing at me from mom. I get my brother on the phone and she tells him she doesn’t want to get out of bed. Yesterday, my brother said to leave mom in bed and he was coming over to help - thank goodness. Right before my brother arrived, Mom got out of bed alone and went into the bathroom! When my brother walked in, Mom was in the bathroom but was just standing there.
I'm exhausted on a daily basis before noon just trying to get mom out of bed! I’m 61 yrs old, have had MS for 20 years, and can’t get my mother out of bed in the morning! My sister is spending the night with us tonight so the two of us can work together getting mom up tomorrow morning. Who knows if this will help. I welcome any and all help you wonderful folks can provide!
This is so crazy! Help!!
One of the hardest jobs I had as a nurse was to try to convince families of elders that "they get tired". They honestly are exhausted by and with life.
Of course there is the dementia factor. Mom cannot be reasoned with, and it sounds to me that you do not get the certainty of that truth. There is no reasoning with Alzheimer's and Dementia, which is the heading under which you posted. And honestly if she know ANYTHING now, it is that it isn't going to be a beautiful day.
The sad truth, Vande, is that you have enough on your plate. You have MS and are in your 6th decade. YOU now deserve some peace, as well. YOU are tired, as well.
It is quite honestly time to consider placement for your Mom and some kind of life for yourself. This is increasingly going to become too much.
You will not be able to convince Mom that "It's a BEAUTIFUL day in the Neighborhood" and that she should just "rise and shine" and life will be good. It won't be much good anymore. She is suffering the indignity of being treated like a little kid again at the same time she suffers the indignity of her body failing her, of awakening in a soiled bed, of a long slow decline where ever day sees loss after loss after loss after loss until finally one is allowed to be at peace.
I am so sorry for all you are suffering in your own life, for all you are suffering in seeing the daily declines for your Mom. I think it might be a mercy to you both to place her. Consider Board and Care in a loving place that has few patients.
The prime imperative for you both, to my mind, is no longer to rise and shine. It is to survive the day with some strength and some peace and some dignity. My heart goes out to you both.
I know I would be mightily ticked off if someone was waking me up each morning, especially if I did not have to go somewhere.
Why do you feel the need to control the amount of sleep your Mum gets? You state that you wake her up, you do not allow her to nap as long as she wants and you determine her bed time. She is not a school aged child.
Have you thought that perhaps she needs more sleep?
My Dad is 91, he sleeps about 18 hours a day, we do not stress about it.
I think you did not make it clear you had to awaken Mom for medication. You actually gave a very descriptive picture of going in with a cheerful "Rise and shine" and pulling open the curtains. At 7:30. Which now I assume is the time she must take a medication. Perhaps think of changing that medication schedule.
Mostly what I see from your response to us, is that you are really very overwhelmed. I don't mean that as criticism. I have long know my own limitations would preclude my doing this care for a single day; I could not. I don't pretend to know how anyone does.
You have your own health issues. It may be time to concentrate now on your own life and to see Mom safely placed. There won't really be an "answer" to what you describe. She may be no happier getting up hours later. You are dealing with incontinence and all the worry that goes with that as well. How can you expect of yourself caregiving with three loads of laundry.
I don't know what kind of help you can find, but I suspect not enough to ward off the grim truth that placement of Mom may be in the future. I am sorry for it and the grief and pain of it. I don't see how you can go on much longer.
Or follow some of the advice here.
I did it for 9 months. My life when my mother came to live with me became totally that of taking care of her.
I slept on an air mattress on the floor beside her bed every night, because she had dementia, and could not understand or remember that she could not get up by herself.
I couldn’t take a shower because I couldn’t leave her by herself.
Ultimately all I could do was to eat. I gained 60 pounds in 6 months.
One day when I attempted to help her out of bed, she fell against me and pulled me to the floor. At that moment I knew that neither she nor I could benefit from the arrangement we were in.
You are doing everything you can do right now. You know that even with 2 of you working together, she is still likely to be unable or unwilling or just too reluctant to get out of bed when you try to get her up.
You are ill yourself, and you most likely know that stress is likely to exacerbate YOUR health problems.
There are issues that arise when dealing with our aging LovedOnes that have NO good solutions. Your situation is coming to this point. Most of us have lived the life you’re living now, some of us for less time than you, some of us for more.
If anyone had a better way to do what you are trying to do, we would tell you.
Please understand that while you have taken on the responsibility of caring for your mother, you yourself also need good care.