Hello everyone. I’ve been reading these boards for a while and I like how everyone here is so helpful.
My M who is a former nurse is caring (she is not the sole caregiver, there’s someone who comes in during the day-8 hours) for my step father who has mid stage dementia, hearing problems and incontinence. M herself has heart issues (a-fib) and balance problems. She refuses to even consider the idea of memory care, or even that the house is becoming a danger due to his many falls. He’s fallen in the kitchen, living room, dining room, and bedroom. He has had a few syncope episodes in the backyard where he’s passed out because he doesn’t realize how hot it is and passes out when his blood pressure drops. He’s been in and out of the hospital about seven times since 2019.
In 2019, SF had the initial accident, where he turned around too quickly and fell on the kitchen floor. Damaging his spine. He was in rehab for two months and he was never the same again. In the years leading up to his accident his dementia had been slowly getting worse and as it happens my mom’s strange ongoing denial about it. I first noticed it in 2013, as did everyone else. She still calls it “out to lunch” and hopes I think that he will get better and he will be the “man she married” again, I just look at her and say nothing. She was a nurse yes, but not with dementia patients so she had no experience with it.
Into the age of covid and the continued decline of SF, my M loses her temper almost every day and screams at him causing her to have A-fibs, I gave her two white boards to write on so she didn’t have to scream at him (lack of hearing). It doesn’t seem to help. She takes a prescription drug made for anxiety to help with the stress, it helps to put her to sleep but she still wakes up to the same reality.
I am the only one who helps out (I do the books, shopping, stay over if she needs it etc). His kids don’t help out. He is not my father but I’ve tried to be there for her when things get overwhelming. Due to previous experiences with him (before the dementia he was verbally abusive to me, I’ve never forgiven him) I’m only there for her. He behaves like a child and she doesn’t understand that he’s not going to remember to wash his hands before he eats a candy (she has covid protocols). She doesn’t have patience with him and he is so dependent on her.
However, I am overwhelmed by this ongoing, never ending struggle that’s unfolding in front of me. Worried that every day I’m going to lose her to the stress. Worried that she loses sleep because he’s up five times a night, urinating, rocking back and forth, making messes, sweating through his clothes and walking off to tear the cupboards apart for Tylenol.
Everyone has told her that maybe she should put him in memory care. She refuses and says that he will die in memory care. He will die anyway if he takes a bad fall. He can’t even walk up the front two steps on his own, so how is he going to navigate the others? It’s a one story house but even a rug poses a tripping danger. He won’t use his walker at all times so down he goes if he falls. Last week he fell on the floor while trying to get up off the sofa. She couldn’t get him up and had to call a neighbor to come over.
How does one convince a stubborn M to give up some of that control and realize that the house is unsafe for him? Realize that the stress is shortening her own life? Realize that lack of sleep is bad for her health? Realize that when she screams at him her heart takes on that anxiety? I have told her that if she dies, I cannot take care of him. I will not take care of him.
How do I help her? I’m so in over my head. Sorry for the length. Thank you for your help everyone.
This is somewhat self limiting in that there will be, sooner or later and likely sooner, a wake up call with serious injury to either your Mom or your stepfather. I am really so sorry, but with your Mom competent to make her own decisions there is very little you can do.
I’ve tried to talk to her many times and I hit a brick wall every time. She’s often said to me “how much longer can I do this”? I figure that each time he has a fall, if she calls the paramedics, the incident is logged into a system. I am waiting for that one last fall where she won’t have a choice in the matter.
I’m currently looking into psych counseling for her and dementia group therapy based in the Los Angeles area. Anyone knows of a group in the SF valley I’d be interested. Thanks.
There are many ways to care for a loved one, and it's rarely in their own house and by someone who is overwhelmed by the job.
Or getting SF's doctor to order an inhome evaluation of the home enviroment (for SF's safety).
Most of our parents won't listen to us "kids" but will listen to professionals.
Is mom worried about the cost?
As Barb mentioned, Council on Aging is a good resource. I have used their services and say that I was pleased. It’s not instant service. It’s on a first come, first serve basis, so be prepared for a wait. I do encourage you to be put on the waitlist.
The other thing that you may want to do is call the doctor and get a contact number or email for a social worker to help plan for current and future care. I have done this as well. The social workers deal with elder care on a daily basis and can offer probable solutions.
Wishing you and your family all the best.
Your Mother has accepted home help. Big congrats to her for that 👍.
Book in a time with her to have *The Chat*.
Tell her what you see, that you are concerned. Ask her what she wants, what she realty wants. Being young & fit again? Have SF's dementia cured? Nice to wish for.. but unfortunately not going to happen. Focus on the REAL options now available. What are HER priorities now? Keep SF home? Look after him herself? Avoid a 'facility'? If so, I'd call that Plan A: Age in Place.
To keep doing that she may need more home help (a lot more) including nights.
Then discuss Plan B: Age in a Residential Care Place (ie Memory Care). Maybe it can be avoided, he will die at home, it happens... But, maybe not. Or it's needed because she gets ill.
You have clearly told her you will not be stepping into her shoes. Congrats to YOU for that 👍.
Explain that if she is out of action (for whatever reason), SF may be transfered wherever.. wouldn't she rather have a nice place picked out?
So that's The Chat. Therapist told me it can take at least SIX TIMES to do this to make an indent to elder denial. So keep going.
But if, like many others, multi chats make no impact you will enter The Club *Awaiting a Crises Club*.
This is my friend's journey... 2-3 yrs loop of falls/ER/rehab/home but just today tells me her relative has come to a major turn in the journey. Another crises. This one to be known as The Final Fall: the 'beginning of the end'. #femur, #pelvis, head strike.
Some have found adding a third party (social worker, a church elder, a trusted friend) to The Chat can help.
I wish you the very best of strength & luck.
If the community has an aging and long term care organization, they can help her sort through what is important for him in his day that a memory care facility would need to know so he continued the important things of his life. This might alleviate the fear that he would just die if placed in a memory facility.
Then I read that close to 40% of family caregivers will die living behind the love one they were caring. Those are terrible odds. My Dad wanted to move to senior living but not my Mom, and Dad wouldn't go without her.
Then I realize that I WAS enabling my parents to remain in their house, I was helping out too much. It was exhausting as I still had an career that I couldn't give up as I fought too long and hard for that career. All of this was making me sick, I felt like I would die before my parents. Then what? Bet my folks would have to move to senior living, or hire caregivers around the clock.
Sadly one of Mom's falls was her final one. Dad sold the house and moved into senior living. He loved senior living but he wished my Mom was there to enjoy the benefits of living in such a wonderful place.
And I wished I would have said to my Mom at the very beginning of this new journey, when she asked for me to do something, "no, I can't possibly do that".
If only I would have found this forum at AgingCare years earlier thing would have been so much different.
our Mothers have made a choice and the more you try to convince them to change the more they hold tight to their position.
I started therapy to help me respond and think differently.
mainly I had to just start accepting Mom and Dads poor choices. It’s their life.
I visit, shop, and pay bills. Try and share good memories. If I’m tired I say not today. I turn my phone off at night to sleep better.
Sometimes we get caught in a rip tide and you can’t fight it. You have to float and eventually it releases its hold and you can swim back to shore.
I agree that sitting down with the DR and discussing how mom feels and the daughter’s concerns is an excellent idea.
"What's that say? I need my glasses - MARY GLASSES!"
"What's the matter dear?"
"Where are my glasses?"
"What did you say?"
"GLASSES!!!"
"Oh! Er, let me think now, you wanted to watch the match last night but then they cancelled it, didn't they, so were you reading? Oh but those were your reading glasses... what did you want your glasses for now?"
"What?"
[Worker earnestly wishes she had never touched the stupid whiteboard and had just made the dear old sausage a cup of tea whether he wanted one or not...]
Your mother is more likely to listen to you if she believes (and is correct to believe) that you will support her through thick and thin in the decisions she feels to be right. Drop the adversarial approach. I'm not saying your concerns are not valid, I'm just saying it doesn't matter how right you are if she doesn't trust you to respect her priorities.
Is there any possibility of her accepting help with washing, dressing, some meals, perhaps exercises or prescribed therapy?
My husband was in a nursing home for rehab there was a couple who was there in reality he was the patient the wife didn't need to be there they also gave her her meds but when her husband died she had to find an apartment and move out. This way she got to be with him and the nurses took full care of him so the stress was gone And she had 24/7help
Maybe there is such a place where they livehire a live in nurse.i think the best is to talk to their doctor and make him the "bad" one to put him in NH. Hope this helps.
It was a process, but when she saw how clean and well cared for everyone was she relented.
Has anyone ASKED his kids to help out? Or is everyone waiting for them to offer help? Sometimes it's easier to get angry with the others, but no one has really asked for them to step up. Not all people outside the home really know how much work is involved. Ask and don't ask for a lot in the beginning. Just getting them to house to do certain things so they see for themselves how much he has declined.
If there is money - add another caregiver to handle another 8 hr shift. That would probably help a great deal.
A conversation with mom about what her plan is if she overdoes it and can no longer take care of herself and/or him needs to be started. Who could best have this discussion with her?
So, until you mom thinks differently, you need to just stop using up your energy trying to persuade her.
Yyou'll just be adding to the stress to both of ya'll.
Prayers
I also agree you should contact Area Agency on Aging or Social Services for an evaluation for not just SF but M as well. Does she understand that fulltime caregivers younger than her have died before their LOs. With AFIB she is at an added risk.
Maybe the best thing to do currently is to get additional people in to assist mom. When dad falls and can't get up she should call 911 to get assistance to get him up. If they come out often enough they may report the home as an unsafe environment forcing the issue of placing him in an appropriate facility.
As for you, limit the help to mom if you want her a chance to see that this is too much (While enabling sounds harsh it is what is going on and yes it seems even harsher not to help - but it's just prolonging the unsafe situation). Get paid help to stay at night. Set boundaries. Do what you are willing and able to do on your time schedule. Maybe put questions down that you want to ask mom - Does she think SF is going to get better; how long can she keep this up without killing herself; if she dies before SF what does she want to happen to him? plus whatever other questions you want your mother to consider. If mom gets angry just stay calm and say you really want to understand her point of view. With answers from her, you may be able to point out her faulty rationale.
Would SF benefit from hearing aids. There is a relationship between not being able to hear and dementia. My father had hearing aids at one time but hated them and by the time he moved into IL he was pretty deaf. He withdrew because he couldn't participate with those around him and didn't understand why they just couldn't talk loudly all the time. Dad was a veteran and I get him enrolled in VA where we got him new HA and batteries for life. It was explained by the hearing doc that since he had not been hearing for quite a period of time he lost some connections between brain and ears and he would still say "what" a lot. But it was much better after he got them - he could even hear the turn indicator in my car which was quite loud. He got along fine with them until he went into SNF shortly before he died.
Yes, you father will probably die in MC, but he's going to die at some point somewhere and chances are he may even live longer at MC with a staff 24/7 caring for him. BY THE SAME TOKEN - don't think this will solve the fall issues. While the staff will do all they can to mitigate any falls, they can't assure a fall won't happen. Some oldsters are really stubborn - such as my father - due to his vascular dementia (on top of alzheimers) he fell regularly - at least once a week. When he was in Rehab after a hospitalization he fell the first night and again the next morning. I cringed every time the phone rang early in the morning and late in the evening.
I wish you well on this journey.
I first learned about this solution myself from internet. Husband’s internist had no knowledge of system. Good luck. Please pursue it. My husband has used every night for seven years!