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.
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.
And safety is not just safety of the person that is recipient of the care but the caregiver.
Safety is not just physical safety but mental, emotional safety as well.
Placing someone is care is NEVER an easy decision.
It is not a "failure" to provide care is is acknowledging that the care for this person is beyond the scope of what can be done at home given the circumstances.
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.
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!
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.
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.
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.
You all deserve a better quality of life, including your father.
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.
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.
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.
Thank you for the response
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.
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.
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.
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.