When did Hospice accept your LO?

Metta · September 20

DH has been declining rapidly for the past two months. We have been housebound for six weeks because he could not remember how to get in/out of the car. He cannot walk anymore and has been in a wheelchair in the house for the past two weeks. He sleeps 14-16 hours per day. He is now 100% incontinent, but I am with him 24/7 and can usually prevent an accident with a quick use of a urinal and can recognize signs that he needs the commode for a BM. He can pull himself to stand at the kitchen counter to use the commode and to change briefs. Transfers are with a recliner lift chair and a lift device I have for his wheelchair, or my own strength while he holds on to me and cries out in fear, ugh.

He never asks for food or water, but he will eat almost anything I put in front of him, sometimes with utensils, sometimes with fingers, often cleaning his plate. He has been drinking less and eating less for a few days. Last night was the first time he closed his eyes at dinner and I hand fed him slowly.

He is mostly nonverbal with me, but he will talk with his male caregiver I hired, smile and laugh with him, which I think is showtiming. He can still speak in sentences, although most of the time he doesn't make much sense or repeats a word he just heard to make a sentence. He often has aphasia.

I think it may be too early for Hospice to accept him because he is not losing weight or having trouble swallowing, and he could probably pull himself out of bed if he wanted to, but I don't let him because he would fall. And he looks really good because I shower him everyday and care for him 24/7 and feed him all his favorite foods. If he were in MC, I know he would be declining much more quickly because he would not have one-on-one 24/7 care. My Plan B MC facility will no longer accept him because he can't walk in the door anymore. I have no Plan B.

Our Case Manager from our insurance company suggested I ask his PCP for a Hospice referral, and she agreed. They are coming on Wednesday.

Any suggestions? I'm really anxious about it. I would love the support. We have no friends or family. But I don't know if it's too soon.

harshedbuzz · September 20

I found this interesting-

https://hospice.org/wp-content/uploads/2020/11/HospiceEligibilityQuickReferenceGuide.pdf

When talking with the person who comes out to evaluate your DH, ask if they have a hospice house available that could be your Plan B should you need it.

HB

Metta · September 20

Thank you. They do have a very nice one. I have passed by it with DH when we go for his hearing aid appointments.

cdgbdr · September 20

He may qualify. I'm glad they are coming for an evaluation. Bless you for the excellent care you are providing.

JDancer · September 21

It sounds like he will qualify. My spouse was approved last May, but they released him after 2 months because he was "too good." He could walk without assistance and feed himself. I was able to to take advantage of a 5 day hospice house respite stay before his discharge.

Vitruvius · September 21

My DW was probably no further along when she was first accepted for hospice. After six months they decided she would not be recertified for the next three month period. In my cynical assessment I suggested she wasn’t dying fast enough for them. There were two hospice agencies that each had a number of patients at the MCF, and they suggested I ask the second hospice agency and they accepted her immediately and she has been with the second agency since then, two years now. Point being that if one agency says no, try another right away.

Hospice provides valuable services and supplies such as a visiting nurse, aides for bathing, and incontinence supplies and some end-of-life medications.

Several thing to remember, at least this was the case for my DW:

Medicare will now consider the hospice doctor your husband’s PCP and will no longer cover visits to his former PCP.
You basically agree to forgo most life sustaining treatments while on hospice. Medicare/Hospice, even any Plan D, will only pay for “comfort” medications. For instance they would not pay for my DW’s thyroid medication. That was cheap enough that I paid out of pocket for awhile until I decided that it was pointless and stopped it.

Quilting brings calm · September 21

my mom didn’t qualify the first time she was evaluated. The hospice agency called back two months later. She had been put on a reevaluate list and it was time to do so. She qualified that time: incontinent, used a walker, used oxygen, had help showering and dressing. I handled things like her finances etc.

Do not sugar coat things when the evaluation is done. If you sometimes help with showering - leave out the word sometimes. Etc. The AL staff member who answered questions at mom’s first evaluation sugarcoated things. I asked for the staff member I trusted most to attend mom’s second evaluation. She didn’t sugar coat anything.

PlentyQuiet · September 21

DH can walk and talk but was losing some weight and double incontinent. I asked for a hospice referral mostly to get his name on their books for later.

They approved him because even though he was talking it was nonsensical, and the weight loss. He was just recertified for the second benefit period.

Kat63 · September 21

I understand you being anxious about your upcoming Hospice evaluation, but just let them know exactly what all you do for your DH. My DH was accepted by Hospice about 15 months ago now. He was still walking although he holds on to furniture, walls etc. to not fall. I had to shower him, as he no longer knew what to do, even if I tried to talk him through the steps, he no longer understood what to do. He still feeds himself although most all foods I give him are soft foods, and I cut everything into bite size before I give it to him. I too know his routine, so help get him to the toilet when needed, and have only had a handful of “accidents”. He is slowly losing weight, consistently about 2 to 3 pounds a month. As far as communicating my DH is very similar to yours. So from my experience, I would certainly think your husband would qualify. Just having the help of the aide to give him showers will help you so much. My aide is wonderful and I can run an errand or take a walk while she is with him. That’s just one thing that they do to help. Hope it goes well and you are accepted. Please let us know how it goes.

Metta · September 24

We were accepted. Thank you all for your support and advice. One step closer to being able to keep DH home until the end with dignity and love.

Kat63 · September 24

Meta, so glad you were accepted. I know when my DH was accepted I felt like I could exhale. So good having their support. Thanks for letting us know.

When did Hospice accept your LO?

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