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?
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.
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.
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 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.
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.
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.
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.
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.
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.
*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
My moms is grateful and tells me she doesn't know what she would do without me. That makes me feel like a bigger a******e that I hate taking care of her.
You're only human just like the rest of us. No one is pefect and no matter how much we might love a person, no one enjoys cleaning can, the constant repeating. the smell, the negativity, the misery, the complaining, and a whole host of other things.
Go ahead, brother. Let it rip. You have every right to and please, don't ever let yourself feel like an a**hole for being human and having feelings.
The PTSD!
During the caregiving I don't think about what is happening at the time, but now that my Daddy, Mama and sister are gone I think about the "if I only knew" things!
That's the worst because you cannot change the past just make the next time better!
I hate watching this once fiercely independent, amazingly strong woman basically regress into a toddler.
I know I am not handling this well emotionally, but I do what *I* need to. My decision, never pushed on me, but I have told all of my kids they are NOT to do what I am doing. I don't ever want my kids to feel the way I do. All I ask of them is to visit occasionally when the time comes. I am awestruck at how people have done/are doing this for years. Like many of you, my siblings are useless. 2 out of 3 didn't even bother with a phone call on her birthday. 1 messages me approx. 1x a month- "how's things there?"
You are all amazing. Positive vibes and good thoughts for each and every one of you here, and all those unfortunate to have not found this forum 💕
People who have only worked a job dawn to dusk 7 days a week, still can't understand what it's like. It's not all your waking hours, it's all your hours, period.
But I read a few other posts and saw that for a lot of people this had been a lifelong thing, the person they were caring for had always been abusive. That's not really true in my case. It's a noticable behavior change.
But my point is that for a lot of things such as guns and knives, you can get a safe and lock them up, but for others like the stove or the generator, you just kind of have to deal with it, and because they're regular household things you have to have it seems like people really downplay the physical danger and it just makes me sad. I read some posts about people that are being cared for trying to start physical fights and it's so sad and awkward because you don't want to get hit or burnt but you're not going to fight back against someone that frail so you have to just kind of let it happen and it feels like it builds up and builds up and just makes you more and more sad.
And then you remember that this behavior had a genetic component and you start getting worried that you're looking at your future and it scares you on top of the sadness.
There are dementias that make people mean and dangerous. Yes, your life is truly at risk because they also get superhuman powers with this aggression.
If it isn't working for everyone involved, it isn't working.
Your grandma has had her time, it isn't fair that you are not able to have your time.
It is okay to say you can't live like this anymore and her children need to step in and get her a level of care that keeps her caregivers safe or they're it, this is not your responsibility.
I am sorry that you are having to live with the fear of dying, please save yourself.
And it's like you know that in most cases they sincerely don't understand but it makes you think of how kids break things you can get them to STOP THE BEHAVIOR, because they can learn that certain behaviors break things, but they can't learn that so you just have to watch it happen, and you don't have infinite money so then you just have to accept that you don't have hot water or whatever anymore. It can just make the whole quality of life worse and can be dangerous.
And the emotional outbursts are so frustrating because they can't be repaired without infinite money so you just kind of watch your home degrade while you hope and pray they don't hurt themselves while having the outburst.
Edit: This sounds really materialistic and I realized it as soon as I posted it, and I'm new so I hope it's ok just to vent. I really don't think that a water heater is worth more than family or anything, it just... I don't know, I just get really frustrated. I know that this is not as bad as stuff other people have written about relationships being damaged.
At a close family friend’s funeral recently, as we stepped into the vestibule the bereaved husband saw us and began to sob. My mom threw herself into his arms (his young sons were dressed in black suits standing around him) and my mom sobbed loudly, “oh, (his name), I have terrible news I just heard this morning that my BROTHER is dying, I don’t know WHAT I am going to do!” Everyone looked disoriented and fortunately my husband acted quickly and peeled her away from him saying “Not now, we are at (his wife’s) funeral.
We are all selfish from time to time but This level of self-absorption has got to be some type of mental illness.
BUT…
the undeniable reality, is that it has set my life back for years. I have a lot to catch up on (caregiving has affected my career, my…everything) (my mom is abusive).
I’ll get myself out of this set-back.