support in finding hospice for husband with dementia

mshenn

My husband's doctors have said I need to plan for the future and locate hospice,  So far I have gotten a list of hospices in my area from ALZ Association and downloaded their document on choosing an in-home care provider.  I have no one to discuss this with or get local references from someone who has used any of the hospices on the list.  Essentially, I am overwhelmed.  Besides "hang-in-there", does anyone have any personal experience with this?

anneleigh

I am fairly new with Hospice care for 2 months for my hubby.  The first company I called we had a visit and the nurse said my husband qualified, only to learn 2 weeks later another visit was needed and 2 nurses evaluated my DH and said DH did not qualify.  It was a bit disappointing but I reached out to a different company a month or so later and had success with VITAS.  The administrator had my husband at 7a on the FAST scale for dementia.

Basically the company will send a representative to your house and assess your husband and see if he qualifies by the guidelines under Medicare.  I am assuming your husband may have Medicare, I do not see any information about yourself in BIO.  You have your choice, so ask questions what they have to offer. You can have different ones come to your house and you make the decision which one is the best fit for you.   Unfortunately because of the pandemic, caregivers are most likely in short supply.  I still hire caregivers to come to house mostly every day.   I get a nurse visit every week, or sometimes it is twice a week if he is having difficulty with dosage.  Medicine is Fed Ex to the house.  A home health aide comes to shower DH 1-2 times a week. (usually it is once).  I also requested a hospital bed, shower chair.  There are other items they offer as well, but He may have to be reviewed for a walker or wheelchair.

Since under care of hospice, my husband's walking ability has further declined and he uses a wheelchair for going around the block.  

I am pleased with the decision so far and appreciate the concern they have for patients.

I hope that you can make some calls and start the process.  Blessings to you~

jfkoc

Yes, start interviewing. While they all must provide the same basic service personel makes a difference. You might ask to visit with the pastor in addition to the person who comes out.

Also  you want a really good answer on their experience caring for dementia patients.

If they have a residence go and take a look.

Hospice can be an enormous help and hiring them does not mean that death is just around the corner. People can be with Hospice for long periods and some actually "get fired" from their care for lack because they do not worsen.

fayth

My DH is stage 7d, and we have had the help of hospice for the last year.  One hospice agency in town would not accept him, and the other one did.  It has been an enormous help to our family.  It has allowed me to care for him at  home this past year.  Right before he was accepted for hospice services, he had been in a rehab facility for 6 weeks, following a bad fall.  Covid was bad during those 6 weeks and I couldn't see him.  I found that intolerable.  So, I really wanted to try to care for him at home.  And, with the help of hospice, I've been able to do so.  

Remember that it is a voluntary program, and you can end it at any time.  They provide invaluable service but they are not the caregivers.  That's up to you and whomever you get to help you.

mshenn

An Update to finding support for husband with dementia.  

First let me say that I truly appreciate the replies I received and support provided to my initial message.  They gave me the PUSH I needed to get things rolling.  Just in these last days I have interviewed providers and made decisions.  Now have completed the initial steps to get caregiver support from husband's VA,  Also I have chosen a Hospice agency who will work hand in hand with the VA.  What a tremendous lifting of my spirits now that this is moving along.  Thanks again for this forum and your guidance.