Called a hospice place

oehlsena

Hello. Some background: we've been caring for our LO in our home as her disease has progressed Her disease has dramatically progressed since last August. She no longer moves on her own unless prompted. She cannot walk because she has no balance and does not have the muscle strength. She has incontinence daily. She cannot feed herself or pick up a cup. Assisting her in walking to the bathroom for her to use the toilet/have her diaper changed has worked for us up to this point. However, now she gets so sore due to this assisted walking that it no longer seems a viable option. She has become become upset/aggressive daily when being helped to the bathroom this week because her feet, wrists, and arms get sore, and this is no new issue. She has seemingly completely lost the ability to communicate to us when she is done using the toilet, this past two weeks. When this is added to the fact that her appetite has so decreased, and that I spend mealtimes asking her to open her mouth only to have her silently staring at me, I just knew that it was time to call hospice.

I found a hospice place nearby. I really like their website. I already called today and gave them our insurance info and got the process started. I am super excited about this. We really needed this. I have wanted hospice involved since last summer. My partner (her son), and I, have just hit a roadblock with this current state of decline. Big disputes about the choices we want to make about her end of life care. For example, whether we are offering liquids enough. He is agreeable to getting hospice, however, I explained hospice as "nurses coming in to check on mom." However, I am hoping that once hospice is actually involved, that they may help us with this transition of her becoming even less mobile. If I'm just going to put it outright, I mean the possibility of her becoming totally bedbound. Whew, it feels good to write that out and finally confront that looming possibility. I talked to LO about my contact with hospice today, and she was lucid enough to show real emotion  on her face and shed a tear which was heartbreaking although I couldn't understand what she said. 

I am still young, just 23, and I know that hospice is going to be a lifesaver for us. I am hoping that hospice can take over full time and that I can go back to working outside the home, but I do not know if that will be possible, yet. Thanks. 

Edit: her communication can be great sometimes. For example, although I mostly try to stick with purees now for convenience sake, I asked her the other day how she liked her steak cooked, and she immediately replied "medium." So despite the fact that she is still "there," the sheer unpredictability of the disease has really been eating up my time and I feel that I have got to draw a line. As I state before, I would prefer to go back to work outside the home when/if possible. 

Pat6177

Kudos to you and your partner for caring for his mother. That’s some serious caregiving for such young folks. I hope your PWD is approved for hospice.  I have not personally used them but from what I read on this forum, they provide a lot of support. You will have a nurse experienced in end of life care to let you know what to expect. You will have experienced nurses you can call on 24/7 to answer questions about your PWD’s care. You will be provided with medical equipment. For example, a hospital bed. I will say that I have never heard anyone say that hospice has taken over full time. They provide an aide a few times a week for bathing but I think the aide is only there for a couple of hours. Some do provide some respite care but that still wouldn’t provide coverage that would permit you to work outside the home. But the hospice folks might have some suggestions for you to free up some of your time. Hopefully others that have used hospice will chime in. Let us know how things go.

Phoenix1966

Unless she’s been assessed for in-patient hospice care, hospice will not “take over full time” as you are hoping. If your LO is approved for hospice, it will help a great deal, however. 

Typically, hospice helps with in-home care, but the family member that is the primary caregiver remains the primary caregiver. Like Pat 6177 mentioned, hospice will provide medical equipment such as a hospital bed, lift, pain management medication, Depends(or similarly named incontinence briefs), a bath aide 1-3 times a week, access to speak to a nurse 24/7, a spiritual support person a few times a month(who can sometimes arrange a volunteer to sit with the PWD a few hours a week) and support like this. 

mommyandme (m&m)

It was a hard transition for me when my mom couldn’t/wouldn’t/shouldn’t walk anymore. I feel for where you are.  The hospital bed will raise up and will be invaluable for the in-bed brief changes. You’re young, but bending over to roll mom etc so I could change her was bad for my back.  We had to switch to tabbed-briefs when going into the bathroom herself was no longer a thing. The pull down briefs were very hard to manage while lying in bed. If you’re not sure how to change her have the CNA show you.  Hospice will provide all the supplies you need. The alternating pressure mattress/low air loss mattress made keeping bed sores/pressure ulcers away, doable.  I’ll say that the hospice team only came in a few times a week.  Nurse once, CNA twice, for an hour…social worker, music therapist and chaplain, here and there.  We did have a wonderful respite volunteer that would stay for about 3 hours once a week.  The nurse and CNA may come every week day for a bit when a transition to end of life begins.  

I hope hospice will admit your LO.  I’m sorry you’re in this place but your LO is so fortunate to have you both. 

dayn2nite2

I agree with the others, you may be expecting too much of what hospice can offer as far as help.

You will still be the primary caregiver.  You'll have telephone support 24/7, a bathing aide who comes in anywhere from 1-3 times a week and equipment/supplies, but you will still be expected to provide the care.

Inpatient hospice is for extreme situations where the patient is unstable at home, and it is for a limited amount of time.  Inpatient can also be used if the patient is imminently dying.

If you are looking for full-time assistance and cannot hire someone, then you will need to place your LO.