Hospice at home vs memory care facility

clkspace

My DW started to have memory issues 9 years ago. Along the way I investigated a number of memory care facilities in our area. However, she does not wander at night or otherwise disrupts my ability to get a good night’s sleep. As She lost her abilities to care for herself I brought in caregivers from an agency to allow me to get time for myself. We are getting by at home mostly okay.

As I take a reading on her decline over the past 6 months and see more of the indications that hospice care is coming over the horizon, I wonder if memory care now makes any sense. Certainly folks in MC facilities have dealt with the end of life issues that I have little clue about. On the other hand a change of that kind for a person in the last stage of dementia must be pretty tough.

Regardless, I will need to have a hospice eval before too many months go by. Advice in these forums seems to be not to wait too long for that. However, I wonder if folks have any advice about hospice at home with additional paid caregivers vs hospice at a MC facility?

Jeanne C.

We're doing pretty well with hospice and a regular caregiver. The biggest benefit of hospice is that the nurse comes to him, so no trips to the doctor. My husband isn't too hard to care for at home - the meds keep the agitation manageable and he can usually be redirected. I couldn't do this without having an aide. She covers 40 hours a week, which is a lot. I cover the other 128, which is still a lot, but we get through it.

I know a few people on the forum have hospice at the MC, so I'm sure they'll give their perspective.

fmb

I cannot speak to having hospice care in the home, but my DH (Stage 7 ALZ) is in hospice care at a AL facility. In-home care is impossible for many reasons: very small, old home, his co-morbidities, my lack of ability to adequately be his full time caregiver, and inability to afford in-home agency caregivers.

The hospice agency I chose is contracted as a preferred provider with the ALF and has a number of patients both in the AL side and MC side of the facility at any given time. I feel this is an advantage over home hospice because the hospice staff are in the building at least five days a week. They will informally check on DH even when it is not the day for a regularly scheduled visit, especially when there has been a recent crisis. If we were at home, he would not get this much attention from them without scheduling an extra visit. However, this is the only advantage I can think of.

You indicate that MC staff might have more experience with end-of-life issues. At DH's ALF the same facility staff serve both sides of the facility, but because they offer enhanced services, the AL side has a number of residents in late-stage dementia, usually with other co-morbidities. I have found that the hospice team has been by far the most informative and helpful for both DH and me.

I encourage you to go ahead and start vetting hospice agencies and scheduling an evaluation when you choose one. The worst they can tell you is that she does not qualify yet and then give you an idea of the criteria she would need to meet.

It seems that you have your wife's care well in hand and have a plan in place to keep her at home. I, too, would question the value of a move to MC at this stage.

ButterflyWings

@clkspace I can only speak for in-home hospice as that is the only experience we have had (he has spent short respite periods at MC but was not on hospice at the time). My answer would be identical to Jeanne C's.

And as fmb mentioned, it makes sense to contact hospice now and have her evaluated. If she qualifies, you and your LO can start benefitting from their services now. Only accept the ones you want for now. There is no downside to either that I can see. Hospice is a help no matter the location.

I am sorry you are at this stage, but the entire dementia/caregiving journey is hard so… I will miss my DH more than life once he is truly gone (vs just declining daily). But I am not the only one here who feels that in many respects it will be a relief when he is no longer suffering this horrid disease.

clkspace

Thank you for the feedback. These are tough things to think about and I appreciate your time to answer.