I apologize if this question does not make sense but I’m a regular in the forum so most of you know my situation. My dad is in a care facility and might be facing some serious health issues. He is continually saying he wishes he were at home. I understand he misses home but he has many physical and medical issues and needs that are best served in a facility. I know that if his issues are serious and require hospice, he will want to come home. I’m not a terrible person but I still would be unable to care for him as he needs 24 care. He can not shower, get in and out of bed, or tend to bathroom needs. I would like to hear from others who have had to decide whether to bring them home for hospice care or let them remain at the facility?
I didn't want him to go in there, but had no choice as his health was deteriorating rather quickly. He lived out of state and his g/f was trying to care for him, but it became more than she could bear.
She told him that she could no longer care for him at home and she told me that I could not do it, either.
I would visit him as often as I could, but he passed away after only two weeks there from cancer. :-(
He fought with the doctors at first because he insisted on being home, but they told him he was going to get weaker and weaker and had no choice.
After 13 years, it's still hard to talk about for me without welling up.
Best of luck realizing there is no easy way to accept loss, but the goal is to keep dad comfortable which is easier to achieve in care than it is at home. Staff on hand at all time helps tremendously.
Of course he will want to go home, that's how he is. And if he can make it harder for you, that seems to rock his boat. Don't buy into the guilt tripping you know will come.
My sister was able to "go home" to a dear friends guest house, because she had no air conditioning in Tucson in June, unlivable. But, it took a village of friends and family to meet her care needs. We did 4 hour shifts with cooks, cleaners and hospice staff, no one person can realistically do this, even if you could devout 24 hours a day, you would be burnt to a crisp in a week, possibly becoming a statistic yourself. It was a lot, physically, emotionally and mentally, all 3 at once is overload on steroids.
Please do not beat yourself up over a situation that is not within your power to fix, change or handle. Continue to be his daughter and advocate and know that role is vital for his well-being. You are and will be doing enough.
Dont change course . This is just more of the same . Your father has been trying to go back home forever .
You cannot take care of him, accept that as fact. You do not have the power to change his health issues and the fact he wants to go back home...most of them do.
In order to move forward you need to accept the truth of the matter.
Many facilities work with 1 or 2 Hospice agencies and can give you a good picture as to the type of care they provide.
The facility will not duplicate the services provided by Hospice. So If dad is getting a bath or shower 2 or 3 times a week by the CNA's at the facility Hospice CNA's will do this and the facility CNA's will stop. (both can not bill Medicaid or Medicare for the same service)
Hospice will provide all his Personal supplies, incontinence products, gloves, wipes, creams, ointments, under pads as well as all the medications he is taking. (They may encourage you to authorize discontinuing some that are not needed and if he is taking any that Hospice does not pay for it can be paid for "out of pocket")
With Hospice you can also request a Volunteer that can visit him weekly.
As he reaches the end of his life there can be a Volunteer that has been trained that can stay with him so he is not alone. The Volunteers will work in shift about 4 hours each, around the clock so that he is never alone.
As you can tell I am a PROponant of Hospice. My Husband and I both benefited from Hospice and the Team we had.
If you do decide you want to take him home Hospice will make sure you have all the equipment that you need to care for him. They will make sure everything is there before he gets to your home. And Hospice will arrange transportation.
If it does become more than you can manage there is Respite that you can take advantage of. This is a benefit covered by Medicare/Medicaid, they would place him in a facility or if the Hospice you select has an In Patient Unit and there is a bed they will transfer him there. If pain or symptoms can not be managed at home again they would place him in a facility or in an In Patient Unit so that medications can be adjusted and while that is being done he will have 24/7 medical care.
There is no way that YOU can possibly care for him.
It sounds like he's being his usual manipulative self.
Stay strong and continue to be his daughter and advocate.
You're right that you cannot care for him at home. He's better off in a facility where a team of professionals look after him.
As for hospice, my father and mother (sequentially) both had hospice care at home plus a 24/7 live-in CNA plus at least 3 relief caregivers as needed, RNs, PTs, OTs, chaplains, MDs and one other family member plus me. Also a volunteer who brought her guitar and sang. Just scheduling and keeping track was exhausting. Oh, and shopping, cooking and laundry too. There are noises, there are odors. Don't do this to yourself. Your dad won't know where he is when he gets to EOL. Neither of my parents did. And you will forever have to live with the overwhelming and sad memory of his dying in your house.
My husband is currently at a facility and in hospice care. He is content there, and the staff is kind and caring. He won't be coming home to die.
I'm afraid that he will check himself out of the facility and then I will be the one having to care for him. But I do not plan on allowing that to happen but it is a fear. He is bold and will call someone else to pick him up and take him home or bring him to my house.
Sometimes "home" is just where you have good memories. If there are certain items from home that would provide those good memories, bring them to the facility if it wouldn't have a negative affect.
You are continuing the honorable job of ensuring that all that can be done for you father is being done.
I read your profile and even with your strained relationship you are doing the very best any one can hope for. You done good.
I wish he had gone into a facility much earlier, but my mom wouldn’t hear of it until there was no other choice with him falling and hurting himself once or twice per day at home. Even with her totally unable to help him up. Nor would/could she clean him from incontinence issues.
I have some really traumatic memories of the days and weeks leading up to his going into a facility because I would have to go over there to deal with constant crises. My mom was in borderline nervous breakdown the whole time and not coping well at all. His overall state was appalling.
My advice— don’t even consider pulling him out of the facility. Warn the facility and anyone he is likely to call ahead of time you can’t care for him in your home, it isn’t safe.
good luck!
Your Dad must be suffering horribly. My sympathies to your family.
Best of Luck to you!!!
Id just had a second shoulder surgery. Didn’t think I could handle a bedridden 200 lb plus man. And this would mostly be alone, since my sibling lived a 6 hour drive away. It was suggested brother , his wife, and I take turns caring for dad in his home. I felt that plan was less than solid. One car breakdown, some one getting Covid, and I’d be alone an extra week or whatever.
Hospice gives very little Hands on care. maybe two nurse visits, a bath aide visit, and the rest of the turning, cleaning, toileting, medicine giving, symptom management is done by the home caregiver.
Dad ended up only lasting a few days at the home. It had been expected to be a few weeks.
DHs grandma had a pretty good care set up. She was in assisted living with 24/7 aides (very nice team of ladies who were all related to each other) . So at her end her aides went the extra mile to coordinate with each other to be there. Hospice did their usual just dropping in. But this allowed my MIL and her sister, both 70 plus, to get their rest at night.
When I got dad enrolled in hospice in the care home, the nurse told me she had many families who got into doing the care themselves at home and found it to be just too much.
Though my parents live at home, they have 24/7 caregivers. I could not do it by myself. There’s just no way.
Nor would my mom in particular want me to help her in the bathroom. I tried once, before we hired caregivers. She said to me “Unh unh” meaning don’t even think about helping me with hygiene.
She hadn’t showered for months and her weekly hair salon appt made her appear clean, before I discovered the truth.
She was more receptive to a caregiver helping her, not family.
I recently switched my parents from a neurologist and geriatrician to hospice for both. They are 92 and declining each week, it seems.
So far hospice has been wonderful. The RN, nurse and social worker take care of health check ups and medications. They regularly communicate with me (I live out of state.)
Plus, I feel like hospice is there for me, too. They have been very caring and attentive to my needs, not just my mom and dad. It’s a win win.
I hope things go smoothly for you.
Yes, if needs hospice, they can go to the facility. He is in a great place. My dad did not mind me helping with hygiene before he went to his facility. He thought it was a bad thing that I felt uncomfortable doing it. Not everyone is comfortable with that part of caregiving. It is good that your mom did not want to put that on you. My dad expects all care to come from me. Even when I visit him, he tries to find things for me to do his room at the facility.
On the emotional side: My Father was grateful to be cared for in a palliative care ward. There was no talk of home. No need. His needs were met by staff with skill, care & compassion & also from family with kindness & love. The walls & decor did not matter one bit.
As you cannot give him the care he would need at home, then to me it is obvious he should stay in his care facility. Wishing he was at home is similar to any of us wishing we were not aging. Wish all you like but the reality is you are aging , and the reality for him is that he needs facility care. In his last days I am sure you want him to have the best care possible and it would seem that is in his facility.
I think her being in the facility at the end was best. She had 24/7 care. My mother was not lucid at the end so bringing her home would not have accomplished anything.
You are right. You can not change people. I have had to learn that. Thanks for letting me that you are anxietynacy. :)
When Mum went on to palliative care in the UK - I believe it's similar to hospice in the US, but with more end of life care such as a nurse and carers every day - we were asked if we wanted Mum to stay at home or to go into a care home.
I thought that Mum should go into a care home, as there would be carers and a nurse on hand 24/7. Her husband didn't want that, as he didn't like the idea of her being alone there.
However, he ended up sitting in the living room, watching TV, leaving her alone in the bedroom all the time. I visited every other day after work and at the weekend, at first. Then, I went most days and sat with her, making sure her needs were met, when it became clear that he wasn't spending time with her.
He didn't know that she was getting agitated and in pain, meaning that the dosage of the end of life meds needed to be increased. I had to fight him on that because he didn't see what I did.
The palliative care team were on call 24/7, but it felt like waiting forever when Mum needed more morphine in her syringe driver and was clearly in pain. The nurse got there as soon as she could, within 5 hours that night, but the nurse in my dad's care home was able to up the dose within half an hour of him crying out.
Despite how weak she was, Mum wouldn't allow herself to wet the incontinence pads and insisted on getting out of bed to use the commode. Of course, Mum's timing didn't coincide with the carers' visits and 2 people were needed to mobilise her.
Because she wasn't in a care home, with help at hand at the press of a button (admittedly with a likely 10 to 30 minute wait), it was left to me to try and get Mum out of bed and onto the commode with minimal help from my stepdad.
The palliative team couldn't get there quickly enough at 10 pm, but the nurse on the end of the phone guided me step-by-step, as I knew what needed to be done, but not without trained help.
I could have cursed my stepdad for his emotional decision to keep Mum at home, which wasn't really in her best interests. Sometimes, we have to make the hard decisions, and be the baddie, in order to make sure that our LO's get the best care in the circumstances.
Don't let emotional blackmail guide you. Always use your good sense. And always protect yourself, as much as your LO.
Thank you! I know that if it comes to Hospice, he needs to stay where he is because he has 24/7 care that would be impossible to have at home. He has many medical/physical issues. It would be a disaster because I could not do it. In my area, Hospice mostly only manages pain. I know this because I one of my best friends dad was on Hospice before he died and she told me they had to do the hands on. I think I remember someone saying that here on the forum as well. He does try to make me feel guilty especially now because he knows I'm on vacation from work.
Don't let FOG (fear, obligation and guilt) keep you going there. Fog is not love. It is the result of manipulation when you were young grooming you to be subservient to f someone else.
If he doesn't understand that he can't go home, that's not your problem. It's his problem. Don't let him make it yours. Don't argue or justify. Change the subject, walk away and get a drink of water, cut the visit short -whatever gets you away from the burden he is trying to put on you. It's not yours to carry.
You could also respond something like this "You really seem unhappy here, Dad. That's too bad as you need the care they provide." But don't argue with him, It fuels his fire. Just say. "I hear you." or something neutral like that. This is not about you. it's about him and his problems. ((((((hugs)))) to you.
Thank you for the hugs! I definitely need them. I was thinking recently how people always ask me how he is doing which is fine but very few people ask how I'm doing and if need anything. The last 3 years of his decline before going to the facility were very hard on me( plus the 20 years before the decline) but so many stories have been told ( untrue) about me. He knows he needs to be there. If I had a magic wand I would make his aliments go away but I do not. My therapist told me that I was a fixer and I'm still working on that. Everyone just please keep sending prayers my way.