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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.

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The lack of sleep is very damaging for your Mom. I lived it and it was devastating. Exhaustion can aggravate and exaggerate every other problem. There is a solution. Have patient use external catheter at night. Also known as Texas catheter. We get supplies from Liberator Medical. With prescription they are covered by Medicare.

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!
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Imho, have your step father's physician state that he needs more care than your mother can provide.
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I'm sorry for your situation. If your mom flat out refuses and she is competent, there isn't much more you can do other than wait for the accident waiting to happen.

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.
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Well, for one thing, it's your mom's choice and you can't do anything about it.

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
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Get other people to point out the safety issues with him. Maybe hearing it from someone else will help her come to grips with the reality of the situation. If she tries to save him from a fall, she can harm herself and then she may end up laying in a bed for the rest of her days. If he can get into a facility, she could go visit without all the hard work associated to his care. Actually visit.

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?
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Bless you. You are doing all you can but I agree with a lot of the advice. When his caregiver is there, take your Mom to a relaxing 2-hr lunch for a heart to heart talk. Explain she is 86, has afib, loses her temper and screams at him daily, takes anti-anxiety medication and is being run ragged. Ask her how that makes her feel. Yes, she is in denial but she can't keep this up. When does she see her primary care doctor again. Make an appt for her and go with her. Print out what you have said above. Give it to the doctor before he comes into the room. At this point, for your Mom's sake, your SF needs to be in Memory Care at the very least, NOT assisted living. Have the doctor talk to her about it. Maybe she will listen to him. I feel so sad for you. Please let us know how you're doing.
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Contact their MD via email and advise that person what you are seeing. Next contact your local aging services/adult protection agency and report the situation. Both your mother and father are in danger. They sort these situations out all the time.
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Is it possible you could take her to a memory care place to see how lovely many of them are? If your mom is in her 80’s - 90’s she would probably hear ‘memory care’ and think ‘nursing home’. Back in the day nursing homes were where you went to die. It’s sooo different now. I told my mom she was doing her husband a dis-service by keeping him at home. He would get better care in memory care.

It was a process, but when she saw how clean and well cared for everyone was she relented.
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You can't convince someone so blind and stubborn. Here are some suggestions - get a Power of Attorney (you) for him so you can make decisions. An attorney would need to tell you who has the power over him - she or you. Second, if/when he falls again and goes to the hospital, he'll most likely go to rehab. Step up and insist that he is NOT going home because she can't care for his safety and that he needs to be placed. Third, enlist the help of the professionals who will come into the house and check things - Office on Aging in your county - they are trained to handle these issues. Or you could become his guardian which makes you the boss. If this man was unkind to you, I don't think you owe him anything and what you are doing for him enables your mother to be so stubborn.
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It sounds that your mom's training education has all been lost to her.she may have some type of de.entia herself. When he has a doctor's appointment you need to go with them and let the doctor know how things are going at home and the doctor can order he goes to memory care. Surely she will listen to the. Doctor you could send a copy of your letter here to the doctor.
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.
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Oh goodness, we had instructions once to use a whiteboard with a client (stone deaf in one ear, hearing aid in the other that might as well have been made of felt), so one at a time every one of us tried it...

"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?
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What a difficult situation for all of you. I would agree that your Mom is not being realistic-exhaustion, some decreased capacity, who knows? A friend's father died recently. Her mother had the first full night of sleep in several years afterwards! You and she must be exhausted. Your stepfather must be having a very difficult time with the falls, etc. I was a therapist before retirement. I suggested to patients that they bring along family members to a session so that member could understand how they were thinking and feeling, not to sort the family member out, but to help my patient express their own thinking calmly to the other person. At times, this led to some very helpful conversations in a calm environment. Not always, but sounds like you and your mom, and your stepdad are all in waiting for disaster mode if nothing else. Look into Aging agencies near you, ask a good AL place who they know. A knowledgable outsider could help you and your Mom think this through. Believe me they have seen this before. I suspect your Mom feels very guilty about relinquishing his care. I would encourage her to talk about this without pushing an agenda. She knows how you feel, and would probably fear sharing her ambivalence with you. Amazingly enough, talking one's feelings at times can make the next step clearer!
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Fowlair May 2021
I was thinking her nursing background almost required her to be his nurse. She has it strongly ingrained in her to take care of the ill, and it would be an even stronger pull because it’s her husband and she “should” be able to take care of him.

I agree that sitting down with the DR and discussing how mom feels and the daughter’s concerns is an excellent idea.
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You need to focus more on care for you. Your story sounds like mine except it is my Father being cared for.
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.
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I have seen statistics from time to time that being a caregiver actually can shorten your life. Maybe if she saw some real statistics it might wake her up. She may have to come to the end of her rope before she relents. In the mean time, maybe you could research various options for her so she won’t have to go through all that when she finally has had enough. I would also get with a counselor for yourself and talk this out. It may help you to be able to navigate this situation better. Maybe you are enabling her to stay trapped in this loosing battle by helping so much.
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Is your mother’s husband a veteran? If so he may qualify for a VA pension under the Aide and Assistance program. If you are able to be set up as the fiduciary for him (there’s paperwork involved but if I could learn to go it anyone can) the monthly pension can be used to make the house safer, purchase equipment if needed to make his life easier, bring in house cleaners or hire outside help. I’ve been caring for my 100 year old dad for 15 years and got set up with the VA last year. It’s been a God-send.
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ReddLari, my Mom was in denial that she and my Dad needed to have a caregiver in the house to help out. Nope, nada, never was her answer. It was "her job" to take care of my Dad. Any time Dad tumbled onto the floor [that was his only age decline issue that couldn't be fixed with meds], no way could my Mom, in her 90's, be able to pick Dad up. It got to a place and time where my sig-other could no longer pick Dad up.... we were seniors ourselves caring for seniors in their 90's.

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.
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Your calling yourself a caregiver of a caregiver is very appropriate. Your mother is not getting the caregiving she needs for the a-fib. She should not be trying to help him up. Ask her to check with her local fire department to determine whether they are willing to help. Many fire departments offer this service and in addition they can see the dangers in the home. You can ask you mother's doctor to discuss it with her and tell her that the home is too dangerous for both of them.

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.
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ReddLari, I read your story with shivers - it is very similar to a friend of mine's tale. A little of my own too. Welcome to the journey. I do empathise.

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.
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Hi ReddLari, welcome. Sorry you are so stressed and worried about your Mom. Unfortunately that’s what brings us all here looking for help and suggestions. You mention your Mom has help 8 hrs a day. Could that help be in the form of overnight help and that way your Mom is at least getting sleep? This full time caregiving is exhausting on a good nights sleep never mind when exhausted. At least Mom wouldn’t be running on empty to start the day. Just a thought.
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NeedHelpWithMom May 2021
Having help at night would certainly help. Sleep deprivation is horrible!
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I am very sorry that you are struggling with this situation. It certainly is a challenge for everyone.

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.
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How about ringing up the local Area Agency on Aging and getting a professional needs assessment?

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?
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Perhaps try the angle that you understand she's caring for him, but caring for him the best way possible is not the current way. Wouldn't she want the BEST care for him? If so, the best care is a place where he's far less likely to fall and die from that.

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.
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At present you are enabling this situation by participating in it. You need to have a honest talk with your mother about how much she understands this dementia, and about how critical that your stepfather get into care. If she will not listen then there is little that you can do, but if you participate know that this allows her to remain in denial.
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.
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ReddLari May 2021
Your “enabling” comment is completely unhelpful. I’m not enabling anyone, as a matter of fact all of this has impacted my mental health and my job. She’s got no one else in the family to step up, so I’m it. I assume you are here because you are facing or have faced the same issues so have a little empathy.

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.
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