I guess I'll go first with this one.
The thing that stands out the most for me about MIL with alzheimers.......
Everything is ALL ABOUT HER. I could cut my arm off and be bleeding on the floor right beside her and she would worry about who was going to bring her a cookie.
I am treated as" a nothing" in her world.
Then I feel guilty for thinking she's an old battleaxe.
Well that's my confession.
How about yours?
*It is one more thing I have to do...no choice in the matter.
*I don't like the smells
*I don't like that I have to struggle to find things to talk about that won't create worry for her or for her to create some delusional story about
*I don't like that for 10 yrs now I have watched her become a stranger
*I don't like that the quality of care she gets is dependent upon how much money she has
*I don't like that my brother is fine with it all falling on my shoulders
*I don't like that in the not so far away future, I could be her and my daughter will be searching this website for answers and solace....
*I hate how pitiful I sound when I say / think these things because I am truly blessed and truly grateful for my life
change 'brother' to 'siblings', and you pretty much have my story
Caregiving is exhausting
When someone is taking care of a baby and they need a break, they can put the baby in the playpen, or the swing, or even in their crib.
Who has a playpen for an old person with dementia that they can put them in so they can't wander off? No one does.
There is no joy in being caregiver to an elderly person with dementia. There's really not any joy in this job period.
For a few years it's been my paying then I come home to my other full-time caregiving job at home for my snide, gaslighting, verbally abusive mother. I thought for sure that I'd die depression living in such misery. Then the universe dropped me a blessed treasure in the form of my ex-husband.
Let me tell something, my friend. You only get one life. That's it. If you're unhappy on the constant drudgery of live-in caregiving, get out of it right away. Go back to your life, home, and freedom. It's not worth whatever you're being paid.
Remember something. No man has ever been rich enough to buy back one second of time.
Go home now. Your client isn't that important. They or their family will kick you to the curb with alarming speed if they find someone who is cheaper or some illegal who will work for next to free. There is no loyalty between employer and employee in this line of work.
Take your life back and stop being a live-in.
Most of all, I hate that I care so much after all of this. She’s all I have left of my dad. I’ve rambled. None of this is coherent. But I haven’t been for months. I’m just happy to get it out.
Maybe it's time to start looking into managed care placement for the two elders.
You do not have to live like this. Lay down the law. When one starts up with the 'She....' cut her down before the complaint can even be spoken. Please practice the following response. Say it over and over again until it becomes your mantra. Put your hand up and repeat the following:
'Shut up. I don't care what (She) has done. I will not tolerate your complaining and sniping anymore. If you cannot keep your nonsense and whining check, I will not take care for you anymore and you will be put in a nursing home'.
Repeat this as many times as it takes for it to become part of you. When you sense a complaint beginning, put your hand up and tell her that you will not tolerate complaining or fussiness. Then ignore her completely for a period of time. Do nothing during the ignoring period. No food, nothing to drink, no care whatsoever. Do for the other one though and let her see you doing for the other one. She will curb the complaining.
If not, stay true to your word and have her placed in managed care.
My mom moved in with my sister after she was diagnosed with onset dementia & stopped caring for herself. She stayed with me for months at a time to recuperate after falls, surgeries & illnesses because my sister works. Eventually, we moved her to a NH. She has improved greatly with medication adjustments & only needs supervision, meals & pill management. I would like to bring her here to live with me but, I don't want to burnout either. I asked my sister if we could alternate caregiving every 3 mons & I would come over days while she works & my mom can pay for a caregiver to fill in the gaps. She said no because it would be too much. So, I offered her taking 1 month every 3 months so I could have a break when I had an occasion to go to, I would go somewhere overnight & a weekend every month. She has not responded.
You are a loving daughter to care for your mom all this time. You have gone above & beyond caring for her all on your own. Perhaps it's time to seriously consider placement for your mom in a nursing care facility for your sake & hers.
When I am trying to do something for my mom and, at the same time, she gets impatient that I am not doing “something else for her” fast enough!
My issue is that although I have three siblings I am the one who is responsible for everything and have received no help from them ever and one of my siblings does things to create more problems for me. The health issues with my parents started several years ago and I have been handling all the medical and financial business by myself and I am the only one who regularly visits my mother in the nursing home. I also have their house that I have been having to deal with by myself. My dad left a hoarded mess in there and everything is in disrepair so it is taking me a long, long time to get the house ready to sell. There are constant decisions to make and problems to take care of that I don't have the energy to take care of my own stuff. I am anxious all the time these days and find myself worrying about everything that can and does go wrong.
I do realize that this is a lot different from having a parent living with you and providing personal daily care and I really feel for those who are also doing that. I do not know how you do it.
We still get asked to help them out but it is fewer and further in between.
What bothers me right this minute...
I made a deal with SIL to come over once a week to give mom a shower (while I was working) and I would pay her $20.00 to help with gas. ("money for gas" was her reason she needed to borrow money every 2 weeks,...)
Well, It has happened 1 time. ---
When I came down very ill for two weeks, her Dtr. came over only once to help give her mom a shower, I gave her $20.00 for gas, and I sent some food with her when she left. (She kept telling her mom how she was only eating noodles because she was broke, which stressed mom, so giving her food made mom feel better), but then we didn't see or hear from her again.
So, mom and I took care of each other. She would not ask for anything. Though I stayed by her in the living area, each time we had to get up, we brought drinks or snacks to each other as needed -- napped in our recliners.
Neither of us were strong enough to do much more than just keep other's company. The house looked horrible,... but we got through it.
Mom may not remember any of it, but I will.
It feels like prison honestly
I desire true freedom and autonomy!
(i had to deal with a mean person) (had to be done; conversation; might as well be now, rather than later.)
anywayyyy, somehow things will work out. i like that quote from the cute movie “shakespeare in love”:
“allow me to explain…the natural condition is one of insurmountable obstacles on the road to imminent disaster.”
“so what do we do?”
“nothing. strangely enough, it all turns out well.”
“how?”
“i don’t know, it’s a mystery.”
This may seems trivial.
l wish I could ask her to cover her mouth but it would cause an atmosphere. Mom has most of her faculties but she’s totally immobile so depends on me and carers coming in. Elderly folk get excessive indigestion and wind. I wish I didn’t have to hear her burps see her very saggy skin or wipe her bum when she struggles. Getting old really sucks.
I have the privilege of caring for my MIL in her time of need. It's hard work on many levels...but it has its many rewards too.
Peach of mind for one...no one else cares for our loved one the way we do.
I want freedom. I feel like the Scottish protagonist in the movie “Braveheart”.
🙂🙂
what bothers me the most? that caregiving affects you in every way (in particular the more problems there are; and the more psychologically difficult your LO is).
i’m lucky that i can work (almost entirely) remotely. i work on my computer - can go anywhere, open up my laptop and work. i can work outside in the sun, in a cafe, in my house, anywhere. sometimes i must go to the office.
yet even with this great flexibility, it’s very hard to work when hundreds of caregiving problems are thrown at you.
i wish us all to find good solutions in removing obstacles in our lives. i’m hoping to eliminate many of my LOs’ problems this week, for their sake, but also for my sake: so i can have a clear, peaceful mind and work even better.