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Mom and Dad live together in an independent facility near me, but since her dementia diagnosis in Feb, she is rarely getting dressed, not leaving apartment for meals, and falling often. She cannot get up when she falls, having to bring in paramedics for lift assist. (They now know her)


My Dad will be 90 in August, and waits on her hand and foot. He had a heart attack last June and has CHF. His health is failing due to the constant caregiving, but rarely complains. When I try to set up a workable schedule to help him help Mom, he refuses.


I brought in PT this week, to help her, (for one month timeframe) but I see it may be time for AL. PT said she will give me assessment at the 3 week mark. The biggest issue with moving her to the AL wing (within the same facility) is that Dad flat out refuses to go. And she refuses to go without him. He says he can manage, but he’s not, and has become prisoner in his own home.


She won’t let him leave her side, and asks him to bring her things, and meals, all day.


It’s just a very tough situation, and I’m kind of a lot a loss on what to do to help them both.


I currently go over every day to socialize and help while I’m there. I tried going every other day, but on the days I don’t go they call and need something. I have POA, do all meds, bills, shopping for them. It’s A LOT. My only sibling refuses to help or even give emotional support to any of us, but that’s a whole other entry I’ll save for another day!


Today, and every day, it’s about what’s best for Mom and Dad as they age, and it’s becoming more challenging, for all of us, by the day.


Thanks for any advice 💕

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Do YOU realize that BOTH of them need a higher level of care than IL?

If so, would the management permit you to use THEM as the Bad Guy(s) and take the stance that they can offer AL level care and that BOTH Mom and Dad now need AL ?

Or as an alternative, might their medical doctor(s) be willing to assume the Bad Guy role?

Sometimes a PROFESSIONAL can do more in this situation than they will allow “their little girl” to do.

OT- aren’t grandchildren the absolute BEST
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Karsten May 2023
I agree. The dad DOES need AL and in fact has it now. The writer is the one providing the AL If not for he/her (OK, they/them in this PC world) the mom AND dad would be in AL>
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I would say to have the facility do an evaluation of your parents. They will be the ones who determine if they stay in IL or AL. Then you are not the bad guy. You can voice ur concerns but the facility will make the decision for you. Its probably in the contract ur parents signed that the facility can move them to AL if they see fit.
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blisss2022 May 2023
Thank you so much. You are right on.
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thanks so much! Yes, the PT and their nurse practitioner have told me they can help in delivering an AL plan. I will revisit the IL contract. The director has told me she would be happy to schedule an assessment.
I guess it’s time.
I appreciate your feedback!
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irwind45150 May 2023
Blisss2022, I hear and feel your pain and frustration. I lived your scenario only in reverse (my dad needed the help and kept falling; Mom was trying to be the caregiver.). As POA, it's not easy to make decisions for them, especially when they push back.

You want to keep them safe, but they continually throw up stumbling blocks. If they have a PCP that they know and respect, have him/her help ease the question of transition. My parents' doctor was able to "posit" worst case scenarios that would permanently separate them. It opened a dialog to ease the transition.

Several people have mentioned therapy, assessments, etc. These are superb suggestions. Remember through all of this (which was hard for me to do), your health and well-being come first, because if you are unwell or burnt out, you won't be able to give them the help and support they need.
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My only sibling doesn’t help either & after 12 yrs of caregiving for our mom I am now estranged from my brother. Your mother does need extra care & she needs to be handed a walker at all times. Can you dad be deligent with making sure she uses one? Can you hire a private caregiver to stop in for an hour here & there to help her get clean & dressed? She could get uti’s if not & really hurt herself if she falls without the walker. If a cane is enough, she has to keep it with her everywhere. My mother with dementia somehow always kept her cane with her. They definitely do continue to learn, even with dementia. Good luck 👍🍀
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My parents were in this situation at one time and refused any help. Sister and I started home caregivers a little at a time. We told mom & dad they were just housekeepers. They started liking the help and became very attached to the caregiver. Start a little at a time.

If meds are sorted in a weekly pill organizer the caregiver can remind & supervise the taking.
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They can not be left alone any longer and need to be put in a home.You don't seem to grasp the gravity of their situation.
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Karsten May 2023
I dont think its fair to say the writer does not appreciate gravity. They are under a lot of pressure and are trying to do the best they can. That said, I agree they both need to be put in AL
(6)
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You might try hiring a caregiver for a few hours maybe 3 times a week to help both of them with showering. However I am surprised that IL is not saying anything. They both also qualify fo AL. Can you get their doctor to say which level of care they both need?
Other suggestions:
Get mom a wheelchair to get her to meals
Step back a little and let the chips fall
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Have their PCP provide a current
" level of care needs assessment" for each of them; it will most likely show ( prove) what you already know and, that they are in denial about: they no longer qualify to be in independent living. With a level of care needs assessment completed,
I would think that the facility they reside in would not allow them to continue in " independent living" and, the administration would be a willing part in the difficult but frank conversation with them that they do not qualify ( and that therefore there are safety issues and quality of life issues etc etc) that mandate that the facility require that they move to another level of care ( AL or perhaps even " memory care" for mother and assisted living for father). Obviously they are grieving ( manifested in denial, anger, other emotional rx) the change in health and decline as well as most seniors grieve any change....even change that is good.

Since you have POA, you may need to go ahead and make needed arrangements for the change ( after conferring with their PCP) , then have a short, brief, honest conversation with them that this change is happening because of safety needs etc, and, you realize that they may feel unhappy with it, it must occur and is scheduled for .....x date, you love them and, look forward to helping them settle in . Expect anger, possibly lashing out...hopefully too bad....
Perhaps enlist the facility social worker and chaplain or a faith leader of their/ your choice to provide spiritual and emotional support for them and you during this navigation into another much needed level of care.

Practice good self care!
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When I started out I was a housekeeper for the couple I wound up being a CG house manager for.

I was told the kitchen counters were their territory and they would handle it. So I respected their wishes. And their choice was to live in a dirty kitchen. Washing dishes meant rinse the food off in cold water and put it in the dish drainer. Not my way, but I respected theirs.

After the Mrs. had a UTI and the oldest sibling came down with his wife from Idaho, they attacked the kitchen and made it gorgeous.

I was ashamed of myself. it taught me an important lesson: do the right thing because it’s the right thing to do.

I learned to ease myself into areas of their life to help manage things better because it was the right thing to do.

Have the courage my friend to do this as well.
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blisss2022 May 2023
Thank you Liz 💕
(1)
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We found our mom on the floor a few times — that was when we moved her ftom her apartment to an assisted living — I couldn’t get her off the floor or out of the tub! It was unsafe for her living with me — and very stressful for me! Assisted living check on them constantly— and have ways to help that I never knew about
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I like the suggestion to have the facility evaluate them. You said you manage everything for them and your one sibling refuses to help. To me, this not just about your parents, it is also about YOU!
You have a right to take care of yourself.
If you do not, you will be in no position to econtinue your caregiving. This is akin to putting your own oxygen mask on in the airplane before helping anyone else.
If it were my parents, I would present this as being about YOU and not about them.
I would explain something along the lines of “I need YOUR help. I can no longer be coming here at all hours etc etc. It is affecting MY health, my job performance etc. If you move into assisted living, you will be getting more help than I am able to give you from people trained to provide it.” If this approach doesn’t work, then you may as POA have to move forward without their cooperation. They may be angry but getting them the best care in the safest setting is your responsibility.
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Check to see what medications she is on! Things like antidepressants and sleeping pills can be very dangerous, especially for people with dementia. When they put my sister on them she was falling constantly and it was making her dementia worse. There are natural methods you can instead of these drugs that are far safer.

A lot of these nursing homes, love to push these drugs because they are lazy. By keeping everyone sedated, they don't have to do much and they don't care if it makes them worse physically and mentally.

Home care is the best. God Bless your father! He has a heart of gold! If other family can help him out from time to time with her care, that would be awesome too.
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LoopyLoo May 2023
Just because a so-called med is ‘natural’, by no means is it safer. They’re more risky, because an herb or whatever you buy at the health food store has not undergone years of testing like a pharmaceutical med does.

I agree it’s bad to sedate the elderly. But it’s also bad to assume any med that will bring them some mental relief is the same as drugging them into oblivion. Drugs aren’t the enemy.
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Falling is very serious and your dad should not be the determiner of her going to Assisted Living or not. Her doctor can, I think, make it your decision with a letter stating your mom's condition. Even with a walker she can still fall. It's good she has PT and hopefully will get some strength back. With dementia it's hard for her to practice on her own and PT just isn't enough sometimes, so this may be ongoing. Dad must get real for both their futures. Do have a doctor talk to him, as he isn't listening to you. Also, they are wearing you out. Let them know you will still be there for them, but it's time for more help in a different living situation.
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It sounds like the facility is willing to help you by being the bad guy with dad, I hope that works for you.
Dad doesn’t want AL, but really you are AL for them. You have the right to set limits on your time, though, if you prefer every other day that’s the way it should be and is more than generous.

Even if dad refuses AL again, you should have a conversation with him and set this limit. He can leave a message on your “days off” and you take care of it the next day. If they truly need every day support it will become obvious that AL is needed.
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It sounds as though they should both be moved to Assisted Living, which will free you up to live your life. Instead of trying to be their caregiver, you could just be the best visitor you can be and spread sunshine and love on them. Perhaps take them to the senior centers for entertainment and friendship so that they don't just focus on you.

You sound like a wonderful and caring daughter who needs a health resort vacation.............................be well.
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Wow! This is a lot. It looks like your Dad really loves his wife since he waits on her hand and foot. Can he be convinced to move to move to AL if he knows he is doing it FOR HER welfare and how he doesn’t have to let the wait on him in AL. This is so tough for all concerned. Even at 90, he is a man and men HATE being dependent. Perhaps he feels his job as caregiver is being taken away. He can be assured that she will still need him. Also has he ever thought what would happen to her if he died? Can you start a conversation with him to get his point of view or fears, about AL?
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blisss2022: Perhaps their town's social worker can help with their dilemma.
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I was in the exact same situation with my mother and father. My mother fell so many times, the EMT's refused to come for a lift assist. She had to stay on the floor for hours one time as no one could help them.

My father refused to get help for her, or him, as I think he liked being a caregiver and didn't want anyone commenting on their situation. He didn't look after himself and died of a very treatable condition.

I didn't live far from them but have a full-time job and two kids so couldn't drop everything to come and help. I had begged and pleaded with my dad to get some help, for her and to get the care he needed, but he refused.

My mother is now in a skilled nursing facility and getting the kind of care she needs. My dad never would have accepted additional help so I know how hard it can be.

As there was nothing I could do about it, I have just accepted it and try to help others in the same situation. If they won't accept help, don't destroy your relationship with them or feel guilt with what is happening.
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If you are lucky the next fall will be just an ER visit not a broken hip. On the hospital you need to emphatically state that Mom is not safe at home and needs to go to a SNF, this is the first step. You can the dad to visit. Near the end of her 'stay ' a case /family conference can conclude she is not safe at home. hey will provide lists of facilities that are appropriate for both of them, or just her. This is not easy but the staff will help guide the family. Or you can hire a medicare advocate to this at $250.00 hourly.
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Bliss 2022
Your parents are a blessing. Yes independents is very important to father . I think he feels his wife is all he responsiblity . Marriage vows better or worse .
Let me start by saying you are doing a great job. I know it's hard to see them . Their time together is precious and close to Glory. They see that and don't wish to be a part. Yet mother you should converse with her and inform her that father needs a little time . That father wouldn't be able to assist her if he gets sick and burnt out. He already is Bliss.
Possible father can go to adults activities and meet some other males just to converse or shoot Ballards or cards. Father needs other socializations also . Even for one day out week couple hours.
Understanding we live in their world. Positive speaking prayers .mother also possible some church ladies of r pastor can come by just a couple of hours. Socialize together. Peace out
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