Hello. I am trying to reach out to someone to find out and understand what I should do in my father's current situation. We have hospice come out and visit him. He is currently staying at my sisters house but has made the request multiple times to be home. He is still mentally capable of making his own decisions but I am wondering how I can find out if he is not going home (where his dying wish is to be) due to something on my families end or hospice end? My family is a little divided on decisions. My father would just like to go home and I feel they are manipulating him into staying somewhere he does not want to be. He asked me to find out how he can get home. Should I seek out legal advice for this matter? Hospice social worker? Hospice does not seem to want to speak with me or any of my others sisters aside from the sister who has medical POA. As mentioned above, my father is mentally stable and can make his own decisions at this point. He (and I) cannot understand why he is not at home and my sister with medical POA will not speak to me about this matter. I would just like for my father to have his wish of being home fulfilled.
Of course your Father's wishes should be considered, but it is going to take more than one carer to look after him, especially near the end, and you will needs lots of help, so this is where you will need All family members on deck, and Everybody's feelings need to be considered in this undertaking.
It would be terrible to devide the family in his care, when right now, family is going to be so Important to him. Having a sit down discussion with your Dad and siblings and try to come up with a solution that works for Everyone who will be significantly hands on with his care. You can make where he is right now work, if everyone comes together, even if it isn't his or your favorite choice.
Your Dad may need to adjust his thinking based on the fact that this Is going to be a difficult road for the Carers, but if logistically this move can be accommodating to all parties, then of course his requests should be made.
I cannot express to you how difficult this endeavour is likely to become, so it is so important that everyone come together and work towards making his final weeks and months as joyous as possible, and do try to make this a Coming together as Family scenario as much as you can, make it a bonding experience for Everyone if you will, for this will make his transition so much nicer and easier on him. I'm sure that your Dad would hate to think that any dissension in the family is caused over his care right at the end of his life.
It is the Holiday Season, do try to make it a Joyous one for him. Calm and Friendly gatherings, music and good food, hearing his children all laughing and getting along, all these things to give him the peace of mind that his children will all be friends when his life comes to an end, please do this for him, and put any petty BS aside.
Also, Organization is key in making the Home Hospice Care work, so create schedules, arrange for volunteers to sit with him to allow for "time off" for the main caregivers, as it is a very draining job, just keeping up the patient daily and medication log is time consuming, but incredibly important. Assign people to shopping, cleaning and tidying up, making snacks and beverages if you are to have a lot of visitors during this time, and do make it as festive as possible for him and for yourselves too! This does not have to be a maudlin time, and do use This time to say everything it is you wish to say, gather stories and history from your Dad while you still can, and write things down for memories later on. Remember to and keep your spirits up, as this is his final journey, so make it a happy one for Everyone!
Near the end, pull together and be of strength to one another, be kind and thoughtful of one another, as every person grieves differently, so respect that too. It is incredible how bonding an experience that this can be for families, but it can also tear families apart, don't let this happen to you.
A few questions though.
How far away are we talking about moving him?
Would he still be in the same Hospice territory or would he have to change Hospice?
Would he need a Medical Transport or can he get in the car and go? Or is this a flight that he would have to take?
Hospice, at least the one that I used and volunteer with, makes all attempts to fulfill a patients wishes. The problem might be if he actually can make the trip. If it is a health or safety issue that has to be taken into consideration.
If you have problems communication with the Hospice workers that are coming to see him regularly you can call the office and ask to speak with the Social Worker that is involved with his case or you can always ask to talk to a supervisor.
I would expect that she does have an objection, and for all I know it may be a very good one. Or several very good ones. Or less good, rather selfish ones. No idea.
The ethics of it are straightforward, on the face of it. Your father knows his own mind on this point, he has hospice services visiting, he wants to go to his home, he has only to say so.
But the practicalities may be a lot less straightforward. How is he to be transported? As your sister was appointed by him to be his medical POA, how far is she going to have to travel to continue to act for him? - because she will need to have eyes on the ground, so to speak. What equipment has already been delivered to her house? Does the hospice provider also cover his home location? What, realistically, is your father's prognosis? - will he require care for weeks or months or possibly longer?
So it's only a guess, but my guess is that your father's wish to go home seems to your sister like a gigantic kerfuffle to carry out for not a good enough reason; and that's even before your capabilities and experience as a caregiver are weighed up. Do you, have any experience of end-of-life care?
It is STILL the case that if your father wishes to go home, then your sister's duty is to carry that out and make the necessary arrangements. Assuming he can afford it. And assuming it's at all feasible.
You just want your father's wishes to be fulfilled. But, there's the rub, there's no "just" about it; it could be seriously difficult to do. If you want to take this further, then your father needs to make his wishes clear to the hospice team and tell them and your sister to include you in discussions. If he does do that, enter on the discussions with an open mind and think practically about the project.
That really is the only question. I moved my father to a mobile home in my front yard because even the 3 miles driving was becoming too much for me. It wasn't 24 hours before he never wanted to go back to his house - he said he was home. I cared for him for 7.5 years, keeping him mobile and assisting when needed.
If your father is capable of taking care of himself, then he should be allowed to return to his own home. But if he is needing care, then the needs of the caregiver also need to be taken into consideration.
I have experience with home hospice and it was HARD. Hard emotionally, hard physically, just very, very hard. And our family had lots and lots of help. So if your dad is in home hospice in your sister's home, you can believe me that her stress level is high.
Before you move into your dad's home, try staying 24 hours for five days in your sister's house so you can see exactly what kind of care and support your dad needs. I think lots of times when people we love are dying we think "I'll make it work" and the result is often heartbreak and tears that it just can't be done.
Friends recently tried to bring their dad home from the nursing home. Two grown women who were available all day every day and they couldn't keep him home. Even the father said "this is too much for you". They brought him back to the nursing home- heartbroken.
There is a reason caregivers pass away before the patient. Please don't swoop in and think you can fix this. The hospice professionals should offer grief counseling. Please ask your sister if this counseling is available to your dad and you. Ask her if someone from hospice could talk you through this issue.
Good luck. This is dying stuff hard. It's sure not like the movies!
”.......mentally capable of making his own decisions......” may need to be established by some objective standards that may require evaluation by a physician and someone trained in psychological/psychiatric assessment of geriatric clients.
Your father has “given” power of attorney to your sister, and if he is mentally competent, HE has the power to withdraw it (in my state).
Why was a medical POA drafted in the first place? Was it drafted by a lawyer?
One of the hardest things about addressing the needs of a dearly loved elderly relative, IMO, is acquiring as much FACTUAL, OBJECTIVE information about his/her health, potential living situation, and mental status to provide the very safest, most comfortable, and most life affirming surroundings possible until a hopefully peaceful release from life occurs.
Many elderly people are informally judged as being “confused” “forgetful” “incapable” OR “clear” “lucid” “reasonable” when actual circumstances may be quite different.
Family disagreements ultimately don’t do much to advance the actual day to day care of the elderly around whom they are focused. Best possible in your situation may be to request a casual holiday visit among as many of your siblings are available.
Also, be a little cautious yourself about what Dad SAYS about going home. “Going home to die” may not be as objective and realistic in HIS mind, whether he is still functioning well mentally or not, as even HE might think.
If you can get that far, you may be able to open a window to some more transparent communication about what Dad REALLY wants, as contrasted with what ALL the members of the family think is “best” for him.
An experience similar to yours is what I’m attempting to find my own way through just now, and you and your family have my earnest sympathy dealing with this. If you can, try to temper your disagreement with empathy in your dealings. Even if your effort to be “kinder and gentler” fails to hit the mark, YOU will feel better for having remained civil.
I would move in and start preparing for his arrival.
He can initiate the changes and give directives and before you know it, he will be in his home.
I would get others on board to help, hospice is pretty minimal assistance, baths, wellness checks, med management that kind of thing but the majority of the care falls on family or paid caregivers, it is laborious when they are bed bound. Just a thought to keep in mind.
As someone said above, try to come together with your family in love and respect for your father to discuss his last days. Being surrounded by love when one passes away is important as well & he may very well be satisfied with where he is knowing he has lots of love there.
You didn’t answer if you see him a lot, or if you’ve discussed this with your sister or other , OR you other sisters. It sounds as if you’re estranged from them. Why create tension and bad feelings now- at the end of his life? Does he have strength to even move now?
Life is short- your dad is on hospice and needs a stable place to be. Can you provide him with that? Are you helping your sister take care of him now? He will need plenty of hands on care toward the end and may need all of you.
Are you planning on moving in with your dad and taking over the 24/7 care your sister is now providing?
If not, you should do everything in your power to make him understand why he is at the best place for his caregiver. It is not all about him and his wants when another person is providing care, sorry.
home?
How do you know he has been refused? Can you be sure he has asked?
I’m thinking It’s logistics. Maybe he’ll be alone, maybe he needs medical equipment at his home that is currently at your sister’s home.
So...you’ve asked your sister and she ignores you?