
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 have caregivers who help with the housework because I am physically unable to do it. I am going to become bedridden soon.. When he says: "Why don't you get off your ass and do something", whatever it may be at the time, that hurts.
I am still mentally alert and take care of a all thee finances, repairs to the car and the house etc. He is physically able to be active but he can not figure out how to do the simplest things. If it is absolutely necessary to do something I give him blow by blow instructions. If I really need help he will help me. He cannot remember two things.
I know he has dementia which is following the path of his mother who lived to be ninety five. So I'm thinking the only way I'm going to have some relief is when I go. I am his POA for everything. We only have each other here, his family are all in Ontario, Canada and my son lives half the way around the country from us. We own our house here and feel safe.
So far I have a memory like an elephant and take joy in all the places I have been and all the things I have experienced but I am getting tired.
Thank you for giving a safe space to say things we can't say anywhere else.
Can your husband be placed in memory care? As the disease progresses, his confusion and delirium may make it impossible for you to keep him at home. Have either of you made an alternative plan? Who is alternate POA for hubby upon your death? Who is your POA?
Please have a heart to heart with family on both sides. Get plans in place.
As I've grown I realised how useful anger can be..
It can lead to saying STOP.
Saying No More.
Having a voice. Using it.
Being assertive is a learned skill.
I am still learning.
Many including myself cared for an abusive parent , it’s not healthy . It is a nightmare . I do believe it has shortened my life . Get out of this if possible.
If possible , your Dad should be placed in memory care using his money . No one should have to take care of their abuser .
If he has a home , sell it to pay for memory care . Or some states Medicaid will pay . If he qualifies for SNF and he has no money or runs out , Medicaid will pay.
Please call your local area Agency of Aging for a needs assessment and help in placing him . Tell them you can no longer care for him .
If he ends up in the hospital for some reason , tell the social worker that there is no one to care for him any longer . Tell them he’s unsafe alone and that you work ( even if you don’t ) . Tell them he is an “ unsafe discharge “ and needs to be placed. Use those words “ unsafe discharge “.
I’m starting to hate it and think that it will cause me to go deeper into depression.
Could you do some research on appropriate facilities in your area? It’s your home. Not hers. If it isn’t working for you and you already hate it, it would be best to tell her that her needs would be better served at an ALF.
It’s really hard to have any kind of private life with her under the same roof. You have every right to go out and attend to your own life. Her attempt to make you feel guilty when you are gone is manipulative and another reason why she needs to move.
I feel abandoned by a mother who has not seen my “grandmother” (her mom) in years and feels that talking on the phone is fine..(she lives in another state)
I feel neglected by my grandmother because she thinks I live for her… bookkeeper, errand runner, house maintenance, and yet work a full time job to maintain my part of the bills..
I am miserable and I want out!!
I dnt like when I speak to the ONE person who needs to step up and at this point take responsibility (sharing is out of the question now) they get emotional on me.. and become Manipulative!!!! as to redirect me from the topic…
You may not like that your Mother stepping back.
You may not like that others in the wider family stepped back.. or never stepped in.
What if I described it differently?
That those folk CHOSE to avoid stepping into harm's way? Chose to reject taking on others' responsibility. Chose self-care.
Do not wait for others in the family to save you from this situation. That's just pushing Grandma's own responsibility around again.
Push back to Grandma directly. Stand up to her. Say no whenever you need to. Firmly but politely.
One answer can be "No, I cannot help with that. I will be at work"... or I have study/exercise class/plans..
Sad to see a loved one decline, but it's even worse to do it and deal with evil family members who only care about how much they might inherit. Just know that there is a light at the end of the tunnel and it's OK for you to make decisions based on what's best for you and your loved one.
I've been helping out the next door neighbor who is 77 and broke her left shoulder and right hand in March. She got a shoulder replacement in March. A couple of weeks ago she had to get her right hand rebroken as it wasn't not healing correctly. Right hand is now in a hard cast. She goes to PT twice a week for shoulder rehab for the new replacement.
She was home and starting to get severe pain in the shoulder replacement. She knew something was seriously wrong. Her PT guys dismissed her pain and said it was because her right hand was now in a cast. She knew it was more than that.
No one would call back from the shoulder surgeons office. She drove over and went to the desk and told them she needed an immediate xray. They could not do this for two days. Extreme pain for two days.
Finally she got the xray. A piece of bone broke off in the area of her humerus. A bone shard is hitting a nerve.
I'm not sure how this will end up but you have to fight for all care and there is no compassion or humanity in the US medical system.
Society, people at work and others questioning your commitment to the parents you are caring for because in their estimation you should just put them in a facility.
Friends and family who say they will help but then disappear or just appear when they please and expect you have the time and energy to give them a task to do so they can say they helped! It’s even more stressful. I have pleaded so many times that if they want to help they are welcome but to comitt to a regular schedule. Whatever frequency works for them. Once a week or month but the same schedule so I can plan and know on this day I get to have time for me. But no, it doesn’t happen! It’s always when is convenient for them and they expect me to rearrange my already hectic schedule working a full time job remotely while taking care of a parent with dementia and another severely ill. Makes me mad.
Meanwhile, Mom is in IL and will not participate in any activities. All she wants is for my sister and I to be with her. I have no answers today. But I am sorry for the loss of freedom you are experiencing. The struggle is real.
It is as though people simply don’t want to understand that the loss of my identity was profound.
But MY parents raised me right so I take a lot of deep breaths, get my sleep and run my couple miles everyday. But very mean of them. Hospital now and home or facility hospice soon.
I am exhausted but I know things could be worse. Thanks for this forum!
1. Lack of personal freedom, for starters. Sometimes I feel as though I were in prison with a life sentence.
2. Lack of support. Family, friends... vanish in the air like those cheap fragrances you can buy in the supermarket.
3. Lack of acknowlegdement. Forget that. Just forget it.
4. Maybe you are a man like me and, lo and behold, you happen to have a girlfriend. Chances are she won't understand you. At all. But you will have pressure. Take my word for it.
Arguments, arguments, arguments... ad infinitum.
5. Loneliness. My mother, whom I live with, was diagnosed with Alzheimer's 13 years ago. You can explain to her your problems, just for the sake of talking to a human being, and she would start to sing. I kid you not.
6. You are invisible for administration.
7. Being a full time caregiver of a loved one with Alzheimer's is so overwhelming I've had to come to this web being a Spaniard living in Spain. At least I can vent, although not in my mother tongue.
Thanks for that possibility.
I can tell you from experience that nothing will change unless you force the issue. My mother was also declining, and it was becoming clear that she could no longer remain in the apartment. She finally began to realize herself that it was no longer working; however, we had already started the discussion about LTC.
There is nothing wrong with telling her that it is getting to be too much for you, and that you want to restore some balance in your life. You can also tell her that you can’t be there all the time and attend to your own life. It’s the truth. She probably won’t like hearing it because this is working for her: it’s not working for you, though, and it doesn’t have to continue this way.
You were able to work, support a family, cook for them every night, and pay all the bills while your husband played golf and squandered money.
Why did you remain married to him for so long? Clearly you didn't need him for anything, so why did you remain in such a miserable situation and more importantly kept your kids in it?
My friend, please see a divorce lawyer. For your sake as well as your kids, don't be a martyr. File for divorce. You won't lose financially. Your 401K will not go towards his nursing home care bill. I don't know if you know this or not, but the rules of Medicaid are very different than the rules of what a nursing home expects. Medicaid is reasonable.
Do not remain married to him though. A divorce lawyer will make a division of marital assets. Then whatever is settled upon is settled. Then your ex-husband gets placed. Then the nursing home gets HIS assets. Not yours.
I feel for your friend.