I often think of how unfair this situation is. Never mind that some universal "fairness" doesn't exist. It's not as if shouting into the night "THIS ISN'T FAIR!!" is ever going to result in situations improving.
What I mean when I say "not fair" is that my parents had their time and chance to be my age already. They did what they wanted, no elders or children to take care of anymore so it was THEIR life to do as they pleased. They didn't have to wipe their parent's rear end, plead with them to bathe, deal with the rashes they got from NOT bathing, deal with their complaining, inability to do anything independently or even make their own meals. They, comparatively speaking, were carefree. They never knew this prison. They never knew the feeling of pouring your entire life into the care of someone else who is never, ever, ever going to gain abilities. Yes, they had children but children develop abilities. As long as I take care of these two it will be downhill all the way.
I resent this. I resent the hell out of it. They had their chance. They had their lives to live freely and without guilt...the same guilt heaped on me by them and my siblings. It's hard most days to not feel like some pathetic patsy who is stuck in a hell of her own making. I could easily cart them off to an assisted living place but then there's the guilt. And instilling guilt is the one talent they were masters of. Boy, could they dish it out.
Here it is, Christmas Eve, regular caregiver has the day off (all the holidays off, in fact) and I'm here begging my mother to go to the bathroom instead of having an accident in bed. And the fill in caregiver will do her best but she doesn't know this situation and doesn't know my mother has to be reminded that she needs help cleaning herself. And she refuses to let anyone help her. So what do I do? Sit and wait for her to develop sores from rashes due to uncleanliness? Does ANYBODY want their epitaph to read "Died because she refused to wipe her ass"? Well, that's where she's headed.
I don't even know if I have a question here. I'm just tired. Tired of being underappreciated, tired of having a compassionless life. All expectations and no thanks for what I do. My sibs are judgmental, full of opinions and criticism and selfish as hell. They are NO help whatsoever on any meaningful level. And they can't understand how, when asked what I want for Christmas, my answer is COVID. And I'm almost positive I'm only 50% kidding about that.
My holiday wish for everyone here is going to sound ghastly and horrible but I'm making it anyway. I hope that next year at this time, we're all free of our current miseries. If our LOs have passed, let it be painless and fast and in their sleep. If they haven't passed...well, I've got nothing here. If they haven't passed on I hope we're at least a little less miserable than this year.
We'll get through these holidays, warriors. Best to all of you :)
Taking care does not necessarily mean hands on. You can see they have the necessities from a distance. You sound burned out and it is time for you to make change. Only you can do it and don't feel guilty. You will still be the caregiver, just from a distance.
Rereading your post, this may not apply to you but there are many small homes she could be in that give more care. Anyway, read the following paragraph for ideas.
There are many Assisted Living places that are great. My ex is in one in Omak Washington, When my daughter called me crying that she just couldn't do it any more I told her to look for an AL and not call it a "home" or "AL", tell him and everyone else that you found him a great studio apartment in town. That is what it is. It has a bathroom, kitchenette, and a large room that serves as a bedroom, sitting room. They have one bedroom apartments there too. He self paid for 3 years, the minimum is two, now he is on medicaid. They also have a dementia wing if needed. I would go there as long as he wasn't. My late Aunt was in one like it in Dallas Texas.
(((hugs)))) I'm so sorry for everything you've been through. I know being selfless is a thankless job.
It's so hard when you're so responsible and dutiful and caring and loving and over time it takes a huge toll.
I truly hope you'll find another way, my friend. There comes a time when we have to put ourselves first and consider a nursing home.
Thinking of you.
"I could easily cart them off to an assisted living place but then there's the guilt. And instilling guilt is the one talent they were masters of. Boy, could they dish it out."
So, if moving them to AL is easy, DO IT! Guilt is only for those who have done something wrong. You haven't and even moving them to AL isn't doing something wrong. If they start, you walk away, hang up the phone, whatever it takes to distance yourself from their attempts to lay guilt on you.
I didn't take my mother in or move in with her. I did help as best I could when she was still living alone, esp after we had to take the car away (better to listen to her whine than have her kill herself or someone else!) After moving to MC (I did try the aides, but she thwarted that), most everything fell onto my plate. Either I did it or it wouldn't get done (2 brothers.) IF they agreed to something, typical they'd screw it up, which would make MORE work for me. Little Red Hen syndrome. unfortunately, they will get their cake and eat it too.
I hear you on the "fairness." Some commenters just don't get it. Some compare it to them raising you (NOT the same, by a long shot!) My parents had a LONG, GLORIOUS, FUN-FILLED retirement!!! At least TWENTY YEARS! Trips to Europe. Cruises. A condo in FL for winter. Parties with family and friends. They had a WHALE of a time! I don't even want that. But despite not taking physical care of mom, 6+ years of MY retirement are under the bridge, out to sea, gone, never to be seen again! Almost 2 years of that was devoted to clearing, cleaning and getting repairs done to her condo so we could sell it! It was 3 hrs round trip, so multiple trips/week to get a few hrs done. Most of the work I saw to - getting bros to help was almost as bad as doing it myself!
SIX long years - it was hard to see my son and his family (including the one and only grandchild!) Once a year just doesn't do it, but they are far enough away that it's hard on me, and I was reluctant to be too far from home/where mom was in case of emergency.
It is what it is, and I've done the best I could for all those years. Hopefully in some small way she appreciated it. The sad part was not being able to visit with her. We couldn't do phone calls (hearing was bad), or video calls, and her windows faced an interior garden with no access. I had to write things down rather than me talking, but she would read and answer. We got by. I did try 2 scheduled visits, outside and inside, but with masks and 6' apart, I'm not sure she even knew who I/we were.
I don't fault them so much. It was their retirement. Yes, watching over things and managing things for mom has cut into my retirement (aka not doing the rat race daily, but also being on fixed income!), but what irks me more is my brothers and their lack of care and concern for mom. On top of that, they've gotten off scot free! OB is 1 yr older, and has his whole retirement to himself. YB is 10 yrs younger, and will have HIS whole retirement to himself. Me? Who cares that I've given up the first 6 years of that. Hopefully my health will hold out to be able to enjoy some of the rest... Meanwhile, I'm saving whatever I can so that if I need care, my kids won't have to worry about me! I've told them to find a place and just manage things for me. Yes, it will still impact them as it did me, but maybe less.
OB isn't local - he came up a few times to help with big condo stuff (a few trips vs TWO years!) When we went to see mom on this trip, she was OVERJOYED to see him! I sent him back for a visit before condo work and when suggested again, he refused and never went back in 2.5+ yrs. I gave up asking YB to visit, She used to ask about them, but stopped. :-(
My parents took care or their parents because that's what they, in their generation, were expected to do. They knew that would someday be their responsibility. I remember my parents caring for my grandparents. They did butt wiping, changing bed linens over and over, cooking, feeding elders who could not not feed themselves, listening to complaints over and over. They may have, justifiably complained of fatigue, but I never recall them complaining of "unfairness". It was something one just "did" if parents were elderly and infirm. It was expected of everyone in their situation.
I myself did a fair amount of that, but considered myself fortunate because I could hire some decent help. I still felt the responsibility of their care. I was grateful that only one parent lived long enough to require continual intense care.
The needs of the elderly do not change much from one generation to the next. The difference is that the expectations of their children do.
As suggested by others, perhaps you are simply exhausted as a care-giver and could find a facility that could care for your parent adequately. It would depend on their financial status mainly, but there are agencies who could help you arrange something. You would feel less pressured and surely less resentful. You could see your parent often and relate in ways that would be more meaningful to you both.
You are right. This is not fair.
Please consider joining the Alzheimer's Dementia Caregiver's FB Support Group. It's a non-judgmental group where you can VENT.
I don't know what I do without the group. And prayer.
Second, you seem to be running thin from caregiving, burnout, which happens to almost if not all caregivers. Find yourself a support group and set up a BACKUP care plan for you to have YOU time.
Third - the feeling of guilt because you put your LO in a care facility is something that at some point is a learned behavior. Sometimes, you need to leave care providing to the professionals.
If you were married and your spouse becomes I indigent, would you feel the same way.
You're right it isn't FAIR, but was it fair when you studied your butt off and failed an exam, and someone else didn't study and is able to ace it? Is it fair a child is born with cancer? Is it fair being broke on payday but others have money. Life isn't fair. It is what it is and we have to make adjustments to the situation. I was tossed from taking care of my father with dementia, at the same time helping care provide for MIL, and right after my father's death I was care providing for my husband who too a serious fall which was due to what we later found d a Parkinson's diagnosis. During this time, I underwent 6 surgeries including replacement. Was that fair?
I think you need to get the mindset that it is not a bad thing or should you feel guilty for putting your LO in a care facility. I know I will most likely need to do this with my husband. Right now I get respite care for him. Just because we become adults does not mean that we won't need assistance later. Our two sons are proof if this, both had life events under the age of 40.
Seek out help with support groups and any resources available. Take care of yourself. Put your parents into a ALF and visit. Do research on what facilities are best for financial and care needed.
Best of luck
Take care
*There are cleansing soaps you can use with a washcloth to wipe down their body that don't have to be rinsed or just washcloth wipes. It won't hurt their skin.
*There is a type of shampoo shower cap that you put on their head and massage it gently and well all over for a few minutes. No water needed.
* Look online for a bathtub "bench seat" with a back. Then get an attachable hose and shower head for your tub's spigot. You can wash them thoroughly using water once a week or have helper assist you.
*Make extra of different freezeable meals as you cook and put in freezer bags. Label date and contents with a sharpie pen. Oatmeal, grits, precooked sausage, bacon, juice boxes, small diced fruit in cans. Watch out for grapes and hotdogs etc that could choke them.
Google at home elder care items or words to that effect. Make it easier to care for them in their decline. Healthy Living, Carewell...
*It's hard because, unlike a baby you can't just pick them up and clean and and feed them. It's emotionally taxing. Look online for ideas to make it easier. Somehow I ended up caretaking 4 people throughout my life plus work. I had two church ladies help during the day. Still, the doctors visits, bathing, bed sheets... Hang in there.
Life can be tragic.
The one with the heart is used by the selfish one.
Know that people here grieve with you.
“your rewards await you in heaven”.. wishing you strength & peace .. be well.