Over the past two months, my 84-year-old dad, who was diagnosed with Alzheimer's disease at the age of 80, has been declining rapidly. Frankly, it's been heartbreaking to witness because he still knows who he is and who we are, has big portions of his long-term memory as well as his sense of humor, can read and carry-on simple conversations, and wants to socialize with people, yet his body seems to be shutting down. An issue with his dentures back in June triggered a sudden loss of appetite, and since then, he's been eating and drinking less and less while sleeping more and more. It's like the part of his brain that recognizes hunger and thirst has just stopped working, so now he's weak and tired all the time.
Two weeks ago, we contacted the only regional hospice that takes his insurance, and they admitted him to their program. But while they have a nurse on call to answer questions 24/7, no one will be coming out to be physically present with us when his time is near, a situation that terrifies me. The truth is I'm afraid for my dad to die at home, with only my mom and me here to help him through the dying process. I've heard way too many horror stories of what can go wrong when families are left to their own devices like that, and I don't want my dad's passing to be traumatic for him or for us.
I asked our hospice nurse if they could admit my dad to an in-patient hospice facility when the end was in sight, and she said yes, but I don't know when the right time for us would be to request the transfer. I know he doesn't want to leave the house, so I don't want to transfer him while he's still very aware of his surroundings, but I also don't want to wait until we're in crisis. Does anyone have any thoughts on when we should ask for the transfer, what signs we should look for? For the past two days, he hasn't wanted to get out of bed, and he slept for most of the last 24 hours, waking only to eat and drink small amounts. I worry that he can't go on like this for much longer, and I'm so scared of his condition deteriorating before we can get him into a facility with adequate care.
For those knowledgeable people on here who have given helpful answers, what is this hospice facility you speak of? My mom’s hospice provides a nurse 2x/week, a CNA 2x/week and an occasional social worker and or chaplain. They do not have (or did not mention) an inpatient facility for the end. In fact, they gave us a phone number to call to have them come and ‘declare’ her dead, which indicates to me that the won’t be there when the time comes. I am in Connecticut. Any insights?
I wish you good luck going forward and am so sorry your are facing loss of your Dad. Call in all the support you can think of of friends and family.
I didn't find it traumatic at all. Of all the deaths that I've seen, their natural deaths were remarkable peaceful.
Dad collapsed in the bathroom. He had emphysema and couldn't breath anymore. He died loved and cared for.
Mom died 5 1/2 years later from her dementia and she died in bed. Loved and cared for. Mom did the whole reaching out to someone who I couldn't see. I hope she saw Dad.
Mom had hospice for the last 6 months of her life. They bathed her twice a week and a nurse came out to check her twice a week. And yes...medicare paid for it all. Including the items needed for her care. It was the only actual use we ever got out of medicare.
Some people are completely comfortable with their parents dying at home. I would have been terrified. I’m not even sure why I felt that way.
I was very close to my parents and I loved them dearly. I don’t think that I could have taken seeing them draw their last breath.
My dad died in the hospital and mom died in an end of life hospice care home. Mom lived with us for 14 years and it terrified me that she could die in our home.
I don’t feel there is a right or wrong way to feel. I just know that I am not comfortable with death.
I fear seeing my husband die. I would rather die first so I won’t have to see him die.
If I were you, I would see if there is another option out there.
This seems like the time to consult with hospice and let them guide you as to when he should go to a hospice facility. Don't worry so much about dad knowing what's going on. His world will recede more and more as his time comes. In his last days, my dad had no idea that he was at home. He could have been anywhere. He actually thought he was in a hospital when he died, but he was in his own sun room in the same hospital bed he'd occupied for months. Make it easy on yourselves.
Good luck, I hope his passing is peaceful.
I already see my dad's world getting smaller, as you said. I pray that he won't be too aware of his surroundings when the time comes, as happened with your dad.
Not sure about this, someone can confirm if I am right or wrong. But normally room and board in a facility, is not paid for by Medicare. Only the service is paid for. You can have respite care for 5 days with Dad in a facility. And thats every so often. I think with a Hospice facility, they have to be actively dying and Medicare may pay for 5 days of care. If your Dad is using private insurance, you may want to see what they are willing to pay.
My understanding is that Medicare will pay in full for my dad to be in a hospice facility but only when his home hospice deems him to be at the end of his life. What I'm trying to figure out is when I should ask our hospice nurse to evaluate him for that transfer because I can see that she's not going to initiate it unless I ask her to do it.
If he goes beyond the week but is still close to death Medicare will continue to cover, but if they feel that he's improving even slightly(instead of declining)then your mom will have to pay out of pocket to keep him there.
The hospice facilities are beautiful and very peaceful and he will be welled care for if you decide to take him there.
And on a side note you mentioned that you went with the only hospice agency that took your dads insurance. ALL hospice agencies are covered 100% under Medicare, and no additional insurance is needed for him to be under their care.
They also are required to stay around the clock with the family if the family requests it IF the patient is close to dying or is in what they call a crisis.
Not all hospice agencies are created equal, but there are certain guidelines that all must follow and being with the patient 24/7 during any crisis is supposed to be mandatory but I think in most cases they don't want the family to know that.
I had to do a lot of research about hospice as my late husband was under their care for the last 22 months of his life in our home, and I had to stay on top of them ALL the time.
I wish you all the very best during this very natural process called dying.
This hospice we're dealing with seems somewhat similar to yours--they want to do as little as they can get away with doing. I don't think our nurse is going to volunteer any information to us regarding when we should initiate the transfer. I will have to call and ask her to evaluate him for it. I'm trying to figure out when is the right time to ask her to do this. She refused to even give a rough estimate of how much time my dad has left. Right now, he's sleeping almost all day and only taking in a little food and liquid, barely enough to keep a bird alive, but is not in any distress or significant pain. When awake, he is still aware and communicative but just very tired.
It does sound like a tough choice. I am not completely sure how the insurance works or if it depends on hospice type or insurance type. I would have expected regular visits from nurses all throughout your dad's illness.
It's hard because a lot of what makes your dad's character is still there, and I understand your compassion, love, for your dad too. I see why it is a very hard decision for you and for anyone going through this type of situation. Can they provide daily nurse visits? Maybe this is not covered by the insurance? Can you pay another healthcare facility for someone to make regular visits? so he is comfortable at home and can stay at home longer.
If you believe his body is shutting down and he is eating and drinking less, maybe hospice care giving immediate help would be better and staying with him throughout the day, can family members also live in hospice or stay overnight?
It's so hard. I'm sorry. I feel for your situation and all the things you've already been through.
Whether to support someone at home or transfer to in-patient is a hard decision. Even when a direction is chosen, stable people can deteriate quickly or very unwell people can improve.
I think I would try for a hospice nurse assessment. In person, or at least under their direction by phone.
For me personally, my line is if my LO became bed-bound, or unable to get up to toilet/wash with minimal assistance.
Large families with many hands may be able to work as a round-the-clock care team. But as my situation would be just me, or maybe me + 1, I couldn't. Too hard.
I've seen people just gradually slip away over a few days. I've also seen quicker passings. The actual end part does not scare me (but I work sort of in the field).
Please reach out to your hospice support. If possible you want this chapter to be one of feeling blessed to be part of it - the completion of a circle of life.
Sad of course, but ok.
(((Hugs to you)))
I like your thoughtful & compassionate reply.