Shelley727 Asked January 2023

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

My father has been declining in recent months. Diagnosed with lung cancer that spread to his brain almost 11 years ago. He has had health problems on and off but in August he wasn't able to walk anymore. He had a bleed on the brain, when they fixed it, he has two small strokes and hasn't been the same since. He is unable to walk without assistance and is in a wheelchair. In recent weeks, he keeps telling me he wants to go home, doesn't like living here and is confused. He is home, in the same home he has been for the past 40 plus years. My mother and I have been caring for him. My sister and her family moved in with us to help and it is becoming hard to bear. We cannot leave him alone now for fear he is going to get hurt trying to get up by himself. He keeps saying he wants to go home. I don't know how to handle this. He was in a rehab facility after the surgery but left the facility worse than when he arrived. We are now 4 months in trying to rehab him but he doesn't seem to be improving. I don't know how much longer we can keep this up. How do you know when it is time to move them to a nursing home? My grandfather had dementia and we are recognizing the same behaviors now in my father and it is heartbreaking. I want him to be home as long as possible but 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.

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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.

Helpful Answer (15)

Couldn't have said it better myself freqflyer. And I agree that if you have to ask when it's time, it's time, and more than likely past time.

(7)

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.

Helpful Answer (15)

Thank you for the kind words. 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?

(4)

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.

Helpful Answer (12)

But how do I trust someone to take care of him when a family member isn't around? You hear terrible stories of home health care aides robbing families or mistreating the patients etc. I don't know if I would ever feel comfortable leaving him in the house with a stranger.
Thank you for the response

(6)

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.

Helpful Answer (12)

No, you can get help at home. They feel better in familiar surroundings and when their families keep talking to them. Many comments here say to dump them in a facility. If you love your family you will support them all the way, like I did with mine.

(0)

Food for thought-

Years ago, my mother's elderly sister (90) was sick and in the nursing home. She had been through pneumonia and was very unwell. My mother was visiting her and her sister's mind was still good. She told my mom, "I want to go home. I'm ready to go home."

My mother said "You need to eat and try to get stronger and hopefully we will get you back home." Her sister said "NO! I'm ready to go home to my heavenly father."

She died 2 days later.

There is a book called "Final Gifts." It is very eye-opening about things people say when they are in their final days.

If it were my father, with all you described, I'd have him evaluated for hospice care. And if he qualified for it, I'd put him on that path.

Too often, we keep dragging our loved ones to doctors and rehabs, over and over, because WE are not ready to be sad. I get it. Losing a parent hurts. I just lost my father-in-law.

They get so tired. I've heard many a nurse tell of having an elderly patient who just wants to STOP it all, but keeps having tests and medical procedures because their family wants them to.

Helpful Answer (12)

Xena,

I absolutely love what you wrote! My mother wanted to join my father in the afterlife. She was so very tired of suffering in this world.

Your post is spot on!

(2)

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.

Helpful Answer (11)

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.

Helpful Answer (10)

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?

Helpful Answer (8)

Shelley,

Go ahead and cry. It’s a release of all of the pent up emotions. Trust me. I cried a river when I was struggling during my caregiving days. No one should be ashamed of crying when they are hurting.

I didn’t usually cry in front of others. I kept my composure as long as I could, but everyone has a limit before breaking down.

Hospice is wonderful! Go ahead and get started on utilizing their services. Please speak with the hospice social worker about all of this. They are there for the entire family.

So sorry that you are going through this difficult time.

Sending many hugs your way.

(6)

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.

Helpful Answer (8)