How do I keep myself from going mad?
My mom, who has been back home for 3 weeks with 24/7 care after a stroke, calls me 20 times a day (though I block the calls while I'm at work) telling me she needs me to cancel the aides because she doesn't need them. NO amount of reasoning or logic gets through to her. I feel just terrible for her, because she lives in a small apartment and it is very claustrophobic with an aide there 24/7 but there is no other option. She was twice as miserable in the SNF. I just called her and screamed and sobbed and told her there's nothing I can do about the fact that she had a stroke and that she needs care. She cannot hear it or accept it as reality and insists that I need to tell the aides not to come. Today I started sobbing and screaming and told her to shut the f*ck up and hung up on her. Of course I feel terrible, but I am losing my own mind due to all this and other stuff in my life. Her boyfriend and I visit and take her out 2-4 times a week. She has TV but won't watch it.
Once Dad got use to Assisted Living he liked the idea of being around people of his own generation. So much in common to talk about. My gosh, people who actually lived through the Great Depression, World War II, comparing their first automobile, comparing employment, etc.
And he loved the meals, oh how he loved them.... in fact when it was time to head to the main dining room, one had to make sure you weren't in Dad's way :)
During the mornings my Dad had physical therapy which he liked doing, then the afternoons he could do whatever he wanted, so he liked reading the newspapers, his books, and watching TV. I was all smiles at how happy he was. Not once did he ever put on an act saying he wanted to go back to his house.
Now, Assisted Living is usually self-pay, would Dad be able to budget that? If not, then look for a nice nursing home where Medicaid can jump in to help pay for room, board, and care.
At this point I have to add "me as well".
My husband and myself invited my then 83 year old widowed Dad, to come and live with us, if he chose to do so. He had lived alone for a year after Mum died and he was deteriorating in body and mind. I couldn't bear to have him lonely, even perhaps dieing alone and my husband backed me all the way.
Dad gladly accepted, he has thrived and looks better than ever. He has however slowed down a lot mentally, easily confused and very forgetful.
Almost 2 years on my own physical health has deteriorated to the extent that my husband is virtually running the household for 3 adults. He is worn out and I have been to hell and back emotionally, the stress of having Dad here and sharing the same problems that are already logged here by despairing good people. Trying to accept that we can't look after Dad now and that he might well outlive ourselves.
I have had a heartrending discussion with him trying to explain why we are asking him to move into A L by 2019. How do I live with the pain it will cause him to uproot and leave?
All the avenues have been examined but the fact remains that, in order to reclaim our sanity, physical health and wellness, we have to sacrifice Dad's contentedness here, with us.
I won't go on, it's all been said by similarly torn -apart people but it is strangely comforting to share this heartbreak with people who understand only too well. X
Your mom's cognitive loss from the stroke, and even prior to that ( thinking about the hoarding and her inability to see that she needed to change something about THAT scenario) her emotional/ cognitive deficits do not add up to someone who is ever going to be
Grateful
Reasonable
Predictable.
It's going to be a rollercoaster ride with her and you need to steel yourself to the idea that it mat not be the mom you " expect" when you open the door or answer the phone. In facy, i find that just when I think I've got things figured out, mom changes and there is a new normal.
That's why i hang out here, with folks who understand. Bless you, Xina! Be well!
We are still at odds due to last night's argument about all of this. I am distressed at how my mom is so quick to turn on me and not acknowledge all I've done for her, so it's nice that people here acknowledge it!
Needless to say, the lawyer fees are obscene. Obscene. And we owe the longterm care unit of the SNF $16,000 for her two weeks there. It all feels like Monopoly money at this point. Whatever.
My blood pressure has returned to normal. Now that she's home from the SNF and this trust is in the works, I feel like I'm over the hurdle regarding her care. There's more to do, of course, but I am so relieved to have these challenges behind me. IF the election goes the way I want it to, that will be cause for a huge celebration.
Again, thank you all so much for your support through all this. It's been such a help. I hope to help others on this site who are going through similar stuff.
You know your mom best, and you know what has "won" her over in the past. Use whatever strategy works for you. Good thoughts!
You may or may not ever need guardianship; one other thing you can do is to get her doctors to write incapacity letters. That offers some protection should she unilaterally want to change POA and allows you to do more things without her necessarily agreeing to everything. You want to honor her and make sure she has care, but with her not grasping reality you just have to tiptoe around that, give her all the choices that you realistically can, but make the decisions that she can't make for her own benefit.
This is scary. Plus, get this: She told me I have a girl crush on the lawyer and that's why I'm agreeing to all this!! Craziness.
P.S. Should I be starting a new thread for these concerns or staying with this one? I find this site very confusing and hard to navigate.
Consider very carefully if you want to be your mom's guardian, or if it would be better for her to be a ward of the state.
Your mom having 24/7 care is a nonnegotiable at this point. The lawyer knows that. It's either you or guardianship by the great State of New York.
Stand firm. The lawyer should help you out and back you up!
Rant here but don't walk away from getting the trust set up
My mom frequently accuses me of locking her away and taking her money - -what little she has is going quickly and I wouldn't dare tell her how much her care facility and private aides are costing - as it is she thinks she can be at home or go stay with her near 96 year old friend while I'm at work
We met with a lawyer and my mom cooperated fully with giving me POA. This week we meet with the lawyer again to set up the trust. Even though I have POA, my mom needs to approve these documents.
I just don't know how to navigate this situation. My mom clearly has cognitive impairment, especially re short-term memory and being able to accept that she is disabled. Nothing and no one can convince her that the 24/7 care is necessary. If she kicks up a fuss about the financial situation and refuses to sign the trust documents, what do I do?? Even when I tell her this is being done to protect her money, she says she wants ALL her money. She knows all her account balances and wants to be apprised of every dime I spend. This is so upsetting because she is treating me like I'm out to get her, when here I've done every damn thing in my power to make this whole situation as good as possible for her.
Anyway, I know I repeat myself over and over and over. Sorry. I am just worried she will refuse to cooperate with the trust and her money being used for her care. Part of me wants to abandon this whole thing and say, OK, to hell with it. No lawyer, no trust. "You deal with it and watch ALL your money fly out the window. We'll cancel the care and you can sit in your apt alone."
Whatever you do, do not co-mingle your money with your Mom's money. It becomes too difficult to sort out later on. Both my Dad's Elder Law Attorney and CPA had asked if any of my money was in these accounts, and when I said "no", they said "good".
Our parent will remember how much things use to cost, so to see a rental for Assisted Living being $6k per month, all they can remember was when they were first married over a half century ago, their rent was $75 per month, if not less.
We are also working with a lawyer to protect a chunk of her assets by putting them in a trust. She is not one of those sensible people who worked full time for years and has retirement accounts. She just has it all in one brokered account, and it's not much by middle-class standards. She never thought she'd need care or get old.
Anyway, she is really, really upset. Despite having some cognitive problems, she knows to the penny how much she has in her accounts. As you all know, the fundamental issue is her complete denial and refusal to accept what is happening to her--ie stroke has changed her life and now she needs 24/7 care. She insists she doesn't and why are we taking all her money to pay for this?
As the ACOA, my instinct is to make everything OK, so I'm thinking maybe I should transfer some of my money in her account so the balance doesn't keep going down. Except of course she would see that on the statement. As you all know, it's so painful to see our loved ones lose more and more and more health, money, independence.
@mally - well, there may not be that much you can do. If she is competent to refuse to be in assisted living or skilled care, and she is not in danger of losing her home or her help, she gets to decide who does and does not get the POAs that she really should have in place but does not trust anyone enough for. And, that's that. Maybe just keep it light and sweet for now, stay in the picture, and see where things go.
When she reads, she moves the page around to her right eye. She did go to an eye doctor, who said her vision is fine, but something is off with the peripheral vision for sure. She asked me to get her a newspaper the other day and it was just tragic to watch her try to hold it with her right hand. It was falling all over the place.
My mom experienced the same progression - sometimes I found her listening to a Spanish tv station merely because she hit a button on the remote and either didn't notice the channel had changed or didn't know how to change back
For awhile it drive me crazy that she would carry the same book around as she loves to share what she's reading - she could never get beyond the first scene
I still bring her magazines and she flips through them and sometimes will share an interesting article I,e, how to lose 30 lbs in a week - but even f she just looks at the pictures it provides a good distraction from looking at the other residents in memory care