Doc recommended hospice for dad, but he's not dying?

mamatriagain

Our sweet 87 year old father has dementia, and has been living in Memory Care for 5 years.  His psych doctor told us that he is now in the last/end stage of dementia.  We were a bit surprised to hear this because he is still very mobile, remembers his family and can feed himself (sloppily).  He is however, very confused about time and place, his voice is changing (getting weaker and hoarser), and the biggest concern is that he is becoming more agitated and difficult (they haven't been able to find a medication to help with this).  

Anyway, the doctor recommended we engage hospice, which is surprising, because apart from the issues mentioned above, he is healthy and strong, and there are no signs that he is approaching the end of his life.

Part of me thinks that any extra help is good, but I question how dad can benefit from hospice since he's already in Memory Care.

Has anybody had experience with this scenario?

Thanks!

mommyandme (m&m)

Not quite the same scenario but my mom has been on hospice since February.  She not close to death.  Dementia is handled differently by hospice in many cases.  If hospice does an evaluation and admits your LO, then more power to you.  They are immensely helpful for me and I can’t see any downside to checking out the possibility of more help for you.

harshedbuzz

mama-

Most families find hospice services a blessing. 

You don't mention what dementia he has, but most of them are terminal conditions so while he is not actively dying and the end may be quite a while off, he could still qualify. 

Even though he is in memory care, the additional support will be helpful in a number of ways. It'll give him an extra layer of care, there are services in social work and pastoral counseling that can be helpful for family. Some hospices cover the cost of things like DME and incontinence supplies. 

The other piece is that although most MCFs allow their residents to age in place, there is an expectation that once care needs reach a certain level, the family will provide additional private duty aides. Hospice may help you avoid that.

HB

Rescue mom

It may well be the last stage(s) but those stages can last a long time, even years, as others on this board have found.

Hospice can help regardless; as others said, even MC may want you to have more eyes and help on hand. Hospice, with dementia patients, does not mean death is imminent or even 6 months away. Hospices are usually more flexible, and all help is welcome IME.

grammyteacher

My mom was on Hospice for a year and a half. She lived with me but having that little bit of extra help was great. Have him evaluated, Hospice has rules so he may qualify, he may not, he may also go on and then off....it all depends on how he is doing on the qualifying markers.

live in daughter

Hi- I would definitely recommend a hospice evaluation. My Mom was on hospice in home for over 3 1/2 years. It brought us extra services such as medication recommendations and caregiver assistance and other various supplies which helped us keep her in her home. When some skin issues came up we were overjoyed to use the wisdom of the skin care nurse. It doesn't hurt to add others to your team!

DaughterOf

My mother is in a long term care facility and in the dementia wing.  When the nurse/manager called to suggest hospice about 2 months ago, I was really taken back.  I obliged as she explained that there will just be more eyes and hands on mom since she well be on hospice.  

As the weeks passed, I saw that the nurse must have "seen" that I did not; as mom is declining very fast but not from lack of care, she has more care on hospice than she had previously.

I was also surprised months back because my mom did not seem at the end stage.  Things progressed rapidly.  Good luck with the decision process.  I do not regret it.

Cynbar

The only downside to hospice is that it is intended as comfort care only, meaning patients agree to forego tests like MRIs and hospitalizations (with some exceptions for comfort.) Medical issues like UTIs are treated at the home or facility. As long as you are comfortable with that, no reason not to bring hospice in. Your dad will have a RN case manager who will consult with facility staff and make recommendations , they have a lot of expertise and should be able to help with his agitation. It will also bring in extra supports such as health aides, social worker and chaplain, perhaps extra equipment that the facility doesn't provide. They can also help the family understand just where he is on his journey. And remember, if for any reason it isn't working out, you can always request a hospice discharge. He won't be locked in because you give it a try.

Gogo’s carer

I had the same scenario for my mom. The doctor recommended hospice care and it’s been a huge relief. I was so stressed caring for her without the DME and care from hospice. It has greatly improved her quality of life and those of us her caregivers. The word hospice conjures up depressive thoughts, but in actuality it’s there to support you. Take the help.

ButterflyWings

Dear mamatriagain, sending you sympathy and understanding on the grieving such a diagnosis brings. Every day. 

My DH is stage [updated: 6d] and recently qualified for hospice. He walks, talks, feeds himself, is semi-continent and clearly not actively dying. But even small things can and have sent him to the brink of us losing him a few times in the last 2 years, and after the last episode I requested an evaluation with no expectations one way or the other. 

I consider it a blessing that they found him qualified, as it does not change his actual time on this earth...but gives us way more support in the meantime. The quality of life for both of us has been boosted significantly by the additional team, wisdom, and resources. 

DH may come off hospice at some point if they feel he is improving or doing really well, though my understanding of the criteria is that his qualifying dx is terminal (dementia) so he won't actually get better over time. Meanwhile, I have expert, professional, hands on backup after being homebound with him for months since he refuses to leave (even when barely breathing or going literally off the rails with a UTI or other infection).

I would try it if I were you. As others said, it can provide more support for him even in MC, and the team there, plus more peace of mind for you. It could be the evaluator will say not yet... or may be able to help you identify resources you would not otherwise know about. Just the fact that hospice covers the cost of my LOs AD related meds, incontinence supplies, bathing and hygiene products, pads, bedside commode and rollator (he fell) - is super helpful since I am our sole support and have only part-time income. The social worker and a volunteer have called a few times to check on me, and the CNA came twice last week to sit with him during lunch while I ran to the bank, post office and grocery (she would have bathed or manicured him, but he said no). So far, hospice is a godsend.

Battlebuddy

  I had Hospice come out a year ago. I didn’t think my husband would qualify but wanted to check just in case. The nurse spent about an hour evaluating him and agreed he was at 6c. She did not qualify him because she said that they ideally like people to be at 7a. She kind of preregistered him and said when he did qualify it would go more smoothly because he was in the system. 

   My husband did qualify this past August and part of the criteria they used was the decline they had seen from the year before. So there is nothing lost by having him evaluated.  

   Hospice has been a wonderful support for me and dear husband. Just having a nurse to talk to once a week has been a blessing. All the product and meds for free are great, and the bathers twice a week save my back some. Go for it

tracy224

Hi.  Thanks so much for posting.  Can you tell me more about the end of life symptoms.

I'm not sure where my dad lands on the vascular dementia scale. Lately, after a series of events, his condition has gotten much worse.  I'm wondering what, besides weakening voice and agitation are end of life symptoms.  Any information you can share would be helpful. I'm just beginning to learn about this.

The weakening voice and agitation are end of life symptoms. That may be on what his doctor is basing that recommendation.