How to know when you can no longer care for them at home?

Shelley727, welcome to the forum. There comes a time when it takes a larger village to take care of a love one. The fact that you asked "when do you know" means it is time.

Whenever your Dad says he wants to go home, it means he wants to go back to this childhood home, back when life was easy and fun as a child. This is very common with Alzheimer's/Dementia patients.

Yes, it sounds like time for Dad to move to a Nursing Home setting. No, you are not be selfish as Dad will be around experienced professionals who know what to do in all types of situations as your Dad progresses further. Your Dad was lucky in the sense that so many of his family members come to help him and gave him a chance to remain at home longer.

Once moved, you and your sister can once again be Dad's daughters instead of his caregivers, and your Mom can once again be his wife instead of his caregiver.

Thank you for the responses. They are very helpful and well said.

I guess feel terrible and guilty because for the most part we can handle it but when he starts to say he wants to go home I become afraid. My grandfather would frequently try to leave the house and succeeded one night. Luckily we found him and lessons learned prevented it from happening again. Dad is not mobile enough to do so but I constantly worry what he might do. I don't know how to respond when he says these things. I try to tell him he is home and he is being taken care of or say ok tomorrow we will go and I try to distract him. But how long can you keep doing that?
We can't run to the grocery store and leave him alone five minutes for fear of what he would do. My grandmother is in the hospital now and has to go to short term rehab so we are already spread so thin.

How does having an aide work? Their health insurance plan would cover this but it isn't like he has his own house. I live here with my mother and grandmother and my two dogs. My sister is temporarily here (my mother also had an accident back in November, sustained second and third degree burns cooking so I am taking care of her as well and needed the help). I don't have a separate area for him but want someone to just be a companion for when we can't be home. But how do you trust someone to not rob you blind or mistreat him when you aren't around? I'm so confused and upset by the whole process and have no answers. I feel like once we put him somewhere he will rapidly decline but perhaps that is kinder at this point? I don't know.

Appreciate any feedback or thoughts you have. I really could use the advice. Thank you so much.

It’s definitely time to enlist professional help for your father.

I hope that you will find a suitable place for him to be cared for soon.

Wishing you peace as you continue on with being your father’s advocate for him to receive proper care in a facility.

Your father does not recognize the fact that he IS home, so if you were to move him, what's the difference? When an elder is saddled with dementia, they cannot recognize 'home' anyway, so you may as well get him placed in Memory Care AL or a nursing home where he'll be safe & cared for by a team of caregivers, and you can go visit him any time and be his daughter again instead of his burned out and exhausted caretaker. That's my advice.

To say "That sounds selfish and I hate myself for it" is terribly unfair to YOU, my friend. You are not the cause of your father's illness, nor are you able to cure it. It's okay to feel sad and distressed by this situation, but to 'hate yourself' for it makes no sense. Recognize the difference between 'guilt' and 'grief' and then you'll feel better, to a degree. Blaming yourself vs. blaming the disease, that's the thing to do.

My mother lived in Memory Care AL for nearly 3 years before she passed from advanced dementia & CHF in February. It tore me apart to see her in the condition she was in. I hate dementia with every ounce of my being, and how it strips a person of everything they once were, leaving only a shell. I was relieved when God finally called mom Home, to be honest with you, b/c she was finally at perfect peace and finished with her wheelchair, her suffering, and her 'wanting to go home.' She was finally HOME at last, thank God.

Wishing you the best of luck with a difficult situation, and that you are able to grant yourself grace along the way.

If you do not already have Hospice in place PLEASE contact a couple and ask what they can do to help.
You will get All the supplies you need, All the equipment that you need.
You will get a Nurse that will come 1 time a week to check on him.
You will get a CNA that will come in and help him shower and get dressed. The CNA will come 2 or 3 times a week. The CNA will also order any supplies that you need.
Medications will be delivered to your house.
And a Volunteer can be requested so that you can get a bit of a break. (the Volunteer is there for you as much as they would be for your dad)
If you think it is time to place dad in a SNF (Skilled Nursing Facility) the Hospice Social Worker can help you with that.
You can also hire caregivers.
Trust me on this even 3 days a week for 4, 5 or 6 hours is like a mini vacation.
If dad is a Veteran he may qualify for some help through the VA. Contact your local Veterans Assistance Commission they can help out as far as looking into his service and what he may qualify for.

Shelley, we had cameras in MIL's house when she had caregivers. The caregivers knew about it and though we didn't look in all that much, I'm sure it was a deterrent to any bad behavior. There was nothing of value to be stolen in the house in our case so that was not a concern. (anything taken would have been a blessing in stuff we won't have to clear out later actually). We never had a problem with any of the care given, maybe we were lucky. She is in a SNF now, and sure wish we had those cameras now.

I don't know if I can take this anymore. My mother keeps asking me what she should do with him and I honestly don't know what to say. He has good days and bad days. Just now he calls me by my name and asks me if I have the telephone number to his house. I know we need help but I don't know if we are at the hospice stage. We are going to try an aide for a few hours a few days a week and see how it goes. I don't know how my dogs will react and I feel bad locking them up while this aide is here. I hope they will accept this person and not bark at them the whole time. I just want to sit down and have a good cry. My grandmother is in the hospital and we are waiting for her to be sent to short term rehab on top of everything else. Feel like I can't cope. Anyone else feel like this?

I know the feeling. My mother does not recognize me anymore either. I know the feeling, my wife and I see pictures of wife and I doing things, being in events, having fun. Now all those pictures are turning black and white. We are at home almost 24/7 , we have a care providing service since my mom is on medicaid/Medicare but they pay so little that we don't have anyone to care for my mom other than my wife and I.
Even if we did have care providing service, my wife and I cannot just go out of town to enjoy, at least we can't just on a whim like we used to go out of town.

I debated that myself. Should I place her in a facility?

I don't want to and probably won't but at least you had/have family to assist you. I dont.. it's all on me.. so those family members including yourself are frustrated, not understanding have expectations to high for an individual who is suffering from dementia. It's only gonna get worse.

All independence your father will lose, he will be totally dependent upon you for everything.. restroom times you'll have to do everything. I thought I could not bring myself to having to clean my own mother, but I do. You'll be there.

Do call Hospice to come in and assess, if you have not done so yet! They should be great people to help you think about options. You don’t have to decide if he needs their services before you call.
You all deserve a better quality of life, including your father.

After almost 38 years working in health care my answer would be that you have to take care of you first or you will burn out and that will affect your care for them. If its already hurting your home life maybe start looking into other options. There are some nice places that have activities to interest the residents and also therapy there. I loved taking care of all the people where I worked! I could go home at night though and take care of myself too and that is the key to giving good care in my opinion.

Your father requires 24-hour supervision and either requires homecare aids or placed into a facility.

This sounds exactly like what happened with my Dad. It was 9 months from when he was no longer able to walk to when he passed. If he is confused, check for a UTI. My Dad came out of the hospital with a raging UTI and sepsis. He thought he had been kidnapped and had to idea where he was at all. It was heartbreaking.
He needs round the clock care at this point, whether you pay someone to help at home or send him to a home is up to you. But the only advice I can really give you is to put yourself in a position where you can be his daughter, not his caregiver, as the end approaches. Much love to you as you go down this difficult path.

I think when you ask this question to an anonymous forum, you are probably ready.

Hold a meeting with all the close family members who have been providing care to make the decision jointly. Ask everyone to weigh in so no one feels they weren’t heard.

The alternative is to bring people into your home to give you all breaks.

Whatever you and your family decide is the right answer.

Sometimes It feels like there is no right answer… but there is no wrong answer.

Making decisions like this are heartbreaking, but it’s the aging and illness that is the problem, not your choice.

Wishing you the best.

I’d say it is past time! Please do him and yourself and family members a favour and place him in an appropriate facility where people are trained to take care of him. This is NOT your job! If your father was in his right mind, do you think he’d want you to bear this burden? And it IS a burden, which quickly leads to burn out, loss of joy and resentment. You are not equipped for this. I know because I am caretaking my 90 year old mother at home and I’ve become so stressed out I can’t take it anymore, and I’m now in the process of placing her. She has mild dementia, is in diapers and obviously can’t take care of herself. I barely have a social life because I can’t leave her for more than a couple of hours at a time. I once (long ago) said I’d never put her in a home but I had no idea what I was in for. So, you’re not doing your father any favours when his caretaking family members are burned out and resentful and worse - hate themselves for it! Get over it and place him where he’ll get the proper care. That being said, do your research and watch the staff like a hawk to make sure they are treating him well. We’ve all heard the stories…

You can get hospice for help at this point if you don't want to put him in a facility. They can come for a couple hours several days a week or more. They take care of the bathing and all that. It worked well with my dad.

I think your head knows the answer but your heart doesn’t want to acknowledge it. I’m sorry.

I based the decision I would have had to make placing my Husband in Memory Care on 1 thing.
SAFETY.
If it was no longer safe for ME to care for him at home I would have had to place him.
If it was no longer safe for HIM to care for him I would have had to place him.
Luckily I was able to keep him at home. And the main reason I was able to do so was
HOSPICE
I got the supplies I needed. I got the equipment that I needed. I got the support I needed from my Hospice Team.

Karen51 touched on one of the things I said for years when caring for my Husband . I was ruled by 2 major organs in my body. My HEAD and my HEART. I could only hope that when it cam to making tough decisions that my HEAD would rule over my HEART.

"Our Lives Have Diminished To Nothing"! That is the answer to your question, it is time.

I am one of those people who would not do home care, too much in my face everyday and I always felt that I was entitled to some quality of life myself.

Had 3 in AL, now 2, 1 AL the other MC. That is all I can handle, they are safe, fed, bathed and I still have a life.

Good Luck!

I don't know how to handle this.
I don't know how much longer we can keep this up.
(He) left the facility worse than when he arrived.
our lives have diminished to nothing.

That sounds selfish and I hate myself for it. But he doesn't even know me or the house anymore. I just feel so upset and sad about everything.

Your sadness is understandable. You want to fix things. You want dad to get better. If this was the result of some other disease, something the doctors could point to and say "here it is," you would know and would not feel (as) bad.

This is one of the nasty aspects of dementia, combined with his other health issues. You have done your duty. Get some help. Whether that help is in the form of home health or a facility, you need take care of yourself. No, it won't be fun. Yes, you will question every decision you make. But you have to be the adult in the room. None of these are easy decisions. But, based on the way you frame your discussion, I know you have a loving heart and want to do the right thing. You ARE doing the right thing.
Prayers and hugs.

There are many opinions and many different situations on this forum, which is a good thing. My opinion is that home care is head and shoulders above facility care in most cases if it's feasible. A lot has to go into home care - you have to be able to afford either sitters/caregiver when you're working unless you have the means to stop work while caring for your loved one. You have to be willing to accept that your life is going to be very small during the caregiving season - you may have to accept that sleep and peace and quiet and serenity are decreased during the caregiving season. It takes some planning to get everything in order, but it can be done. It's also less expensive than most private facilities and you have the benefit of being at home rather than sitting in a facility when caring for your loved one.

It sounds like there are three-to-four people caring for your dad - you, your mom, your sister/family. It would be a good thing to start working on getting some outside help to come in.

His doctor can write orders for physical therapy, occupational therapy and palliative/hospice care. They will come out and do assessments to see what he is eligible for through insurance/medicare, etc. My mother receives weekly physical therapy and is also under palliative care.

You can also find sitters/caregivers to come in when you most need it and stay with your dad while you get a break.

I can assure you that your father will not receive that much one-on-one care in a facility - they just can't do it, so your dad will most likely suffer from a decreased level of care.

If you place him, in my opinion, he would need a sitter to be with him in addition to the facility staff. You said that he left the rehab worse than when he went into it. That's would be a red flag for me. If you look at a facility, ask questions. Will they sedate him in order to keep him still? Will they catheterize him? Will they even try to rehab him? Or will they just let him sit/lie there?

I know it's sad - so sad to see our loved one become confused and upset about their surroundings. Wanting to go "home" is normal for someone with dementia/alzheimers. My mother also wants to go home - and to her that means her childhood home with her parents and siblings.

I wish you all the best.

Only you know how much you can take.

I have been devoted to my mother. 10 years ago, there was no way possible I would have considered putting her in care. I was determined if it came to that, she would live with me. She has a retirement plan/funds that would cover some people to help.

What changed - and these may seem minor, but they all add up to what is now my decision not to fight my estranged siblings if push comes to shove and she needs to go to care.

1). She is a smoker. So am I, but she is still an indoor smoker and the incredible belligerence when she has to go outside when it is too cold, too hot, too windy, too rainy is an hourly battle. Smoke is incredibly hard to mitigate and permeates every surface and facet of a house.

2). She has mobility issues and refuses to “use it” so she “loses it”. She constantly keeps me on the go…coffee has to be hot, water needs ice replaced every 30 minutes. She wants this, she wants that. She needs help getting out of the chair onto the toilet, back in her chair. This also affects going outside to smoke as I do have a step to my patio or three steps to my garage. She has woken me up four times in six hours for bathroom assistance. The fastest way to burn me out is to deny me sleep.

Sidenote - we don’t live together now and her mobility is somewhat better than it was after surgery in 2021.

3). Incontinence. She dribbles a lot and it is pungent. Supposedly, she has a kidney stone that isn’t causing any pain (thank you, God for that blessing), but it does make the urine smell noxious. 2-3 times a year she will have incidents where she doesn’t make it to the toilet in time - and has an upset stomach. That has proven to be a bigger mess than I want to deal with.

4). Pain medications seriously affect her though process. She is non-compliant and won’t listen to anyone. She passes the MOCA test with flying colors, but still won’t listen when she is told XYZ. She loses all ability to empathize or sympathize. She doesn’t care about anyone but getting her wants and needs met. She also doesn’t remember what people do for her or feel the need to adequately compensate or return the favors.

5). As hard as it has been for me, I’ve had to accept and process the fact that my mother will lie to me and about me. It is too much to manage and I respond poorly to gaslighting/rewriting past events. It can be worrisome wondering what she is saying about me. Fortunately good family friends touch base with me, so I can keep the narrative truthful. I’m also concerned she will lose her core group of friends by telling tales. The middle school hijinks can still cause hurt feelings.

My husband died of a brain tumor. He had to spend a little time in a rehab facility after an unrelated surgery. At the time we didn’t know his tumor had progressed to the terminal stage. We did hospice at home and every day he’d ask me when he could go home. At first I tried to tell him he was home and that (he was a carpenter) he had installed those windows and that door and all trim and painted the room. It didn’t do any good because in his brain he no longer recognized it. He kept thinking he was still at the rehab facility because he was in a hospital bed at that point. It sounds like your dad would qualify for hospice. They are a great help and support and it’s all free. Perhaps you should ask your dads doctor if it’s time.

You say "I try to tell him he is home and he is being taken care of or say ok tomorrow we will go and I try to distract him. But how long can you keep doing that?" Sorry. This is hard, but continue to tell him that you will go tomorrow or even take him for a ride, then back to the house, or even just getting him ready to go "home" is good and will distract. I found that to take my mom somewhere outside, just to move her around would make her think she'd gone home. And then he'll continue wanting to go home over and over. And you will continue to tell him the same thing. It may stop at some point, but even in a care facility, he will most likely ask. It's very heartbreaking. Just keep loving him, get him in a good nursing home, visit him often, and take care of yourself.

Hospice was a godsend when caring for my mother. The care recipient does not have to be on the edge of death to qualify. In fact, over nearly two years my mother was in and out of care, depending on her health at the time. Ask (or beg) your loved one's doctor for a referral. If it's turned down, keep trying.

Shelley727: As for in-home care: If you don't have a personal referral, use a service that vets and trains caregivers (e.g. Catholic Community Services). Research, get references, try them out while you are in the house. Two hours a day, or ten hours a week (a service probably has a minimum # of hours) will give you a break to carry on. Of course it won't be as good as you! But there are advantages, and it might be a break for you loved one too, without the emotional baggage. (Maybe they will appreciate you more, for a nano-second.) Good luck!

The wisest advice I received was from a college roommate who had been through Alzheimer's with her beloved father. Sometimes others need to do the caring so that you can simply love them. It was what I needed to hear as I struggled with what was best for my mom. It is not an easy journey, but we do our best. But I also had to realize that I could not be a prisoner to a disease that had already stolen the mother I knew from me. I honor her by making sure she has good care and by continuing to love her and take care of the needs that I can. That doesn't mean that I must do it all with my own two hands.

You have hit the bottom of the caregiver barrel. It’s time to find a good place for him. There’s no reason to judge yourself. Nursing facilities have two shifts of staff to take care of residents, and you’re trying to do it 24/7. Go to the Medicare website and look up facilities in your area. All of them are rated one to five stars—look for the ratings for overall and resident care. That way you can find the best place for him. A study showed that caregivers have a 63% higher mortality rate with all other factors being equal for people. That says a lot about the exhaustion in caregiving.

There is NOTHING selfish about wanting to live your own life. You have a right to it. You are entitled to it. For all we know we only have one and you are now in a position of having to choose to live his life or your life. He has lived his life. That sounds hard, and it’s depressing as hell, but it’s just the way it is. Put him in care so he is safe. You can visit him and be his loving daughter. But please, live your life. I have been visiting MC units in anticipation for needing to place my father most likely a year from now if we can make it that long. Right now he lives alone, has moderate dementia, won’t accept help so I am doing everything behind the scenes with my DPOA without him even knowing, and will never agree to go into care. So it will take some event that triggers placement. I have been researching and visiting the MC centers so when I get the call that someone has called APS, or he falls down and has to go the hospital, or gets lost in his car ( yes he still drives no matter what we do) and the police come, I will tell them he lives alone and it isn’t safe to send him home. Then I will work with a social worker to get him placed in one of the several places I have pre-chosen for him. I made the decision I would not live him him to be his caretaker. It would require more of me than I am capable of giving.

There are Hospice facilities that could care for him, 24/7, which would free you up to live your life and visit him on FaceTime or in person.

Google: "hospice facilities in NY"

That fact that you're asking means you already know but are feeling horrible about it! I cared for my mom (dementia) for six months, alone!, and finally came to the realization that I couldn't do it anymore. I recently placed her in a memory care facility. It was very very difficult and I hung in there for as long as I could trying to avoid having to do it, but I could no longer care for her AND sleep AND work AND take care of myself!. She's been doing great at the facility. Yes, it's a very difficult decision and even harder when you actually take the action to do it. But you can and you will and you will be okay!

The abuse and neglect in many if not most of these facilities is off the charts! It is often a death sentence for the person you love. They take all of their income and then mistreat them.

Please consider getting in home care to help if you need some time for yourself. You can look into respite options and if you do not have the funds to provide additional care there are programs to help. We have one here called IRIS that will help him pay for his care (that includes family as care givers). They will also help fund whatever he may need in the home or if he wants to do things outside of the home.