Hoarding, hospice and respite

HeyDforDaughter

Heavy sigh (that's from being exhausted)…The backstory: haven’t posted in awhile because I have been taking care of mom (95 - with dementia but had stroke in early Fall) who has been under hospice care at our home for the past 4 months. My Spouse (who works remotely from home but has to go on short business trips on occasion) and I (on Family Leave) are my mom’s primary 24/7 caregivers. But it’s mostly me doing everything - transferring her from bed to wheelchair for meals, changing diapers, feeding, changing clothes, washing clothes, and everything that goes with that. Our adult child gives some relief when able. Her condition is somewhat stable as she can still be put in her wheelchair for meals and to watch tv. But she has been sleeping a lot more these days. She communicates only basically and her mood can be mostly good and even especially when her hospice team members come to visit. 

My issues:  Hoarding - My spouse has been a long time hoarder which prevents the house from being presentable for outside visitors (ie., relatives and friends) from visiting and potential additional help to come relieve us. Anyone deal with living in a hoarding house with dementia/hospice parents? If so, how do you deal with it? Our hospice team makes their visit with no problem.
Respite - Anyone deal with putting a parent who is in hospice in respite care? I understand respite care (up to 5 days a year) for hospice patient will be covered by Medicare. If so, does the hospice patient have to go to the respite care recommended by the hospice agency or can you find one on your own?
Bad experience with rehab facility - after her stroke, mom was in a rehab facility for 3 weeks. Based on my observation of the sub-standard care and shortage of workers, I stayed with my parent 10-12 hours a day at the rehab to make sure she was fed, changed and went to her various therapies. We also hired night-sitters out of pocket to be with her in the evening since she didn’t sleep well (despite medication) and would try to get out of bed (slipped out of bed 5 times). So I’m hesitant to put her in another “facility” based on that bad experience. Plus, I saw first hand what goes on in that particular facility (ie., demented and sometimes menacing patients wandering into my mother’s room (and even laid down on her bed while we were at a PT session!), patients not being fed (trays left in front of them but they were not awaken to eat), patients left in bathrooms and falling off toilets (my mom’s own roommate). So I would probably opt for a “care home” where the patient number is smaller and she could get more one on one attention but I don’t know if such “care home” are covered by Medicare for respite care. But in a perfect universe, I would just bite the bullet and pay out of pocket, someone(some people) to stay at our house to take care of mom to give us a respite but as mentioned above, feel prevented to do so due to the hoarding situation.
Would welcome thoughts, advice, opinions…thank you in advance.

mommyandme (m&m)

My thoughts…

Is your mom in a hospital bed?  (Hospice supplies those…have they mentioned a hospital bed?). That can be very helpful in changing and feeding issues.  Can you move moms bed into the main living area (after removing the hoard from that room). I finally did that with my mom when transferring her became treacherous and she hated getting up at all.  The help only had to come in the front room, the kitchen and a bathroom.  After moving mom out to the living room, I made her bedroom into a sitting area for me so after she was in bed for the night I could still hang out, while not in my bed.  

We also got to a place very early on when mom didn’t change clothes unless they were dirty and she was made to.  She wore very comfortable lounge pants and a soft shirt in and out of bed. (No pants after becoming bed-bound).  Definitely slowed down the laundry problem.  One of my regular respite caregivers did the laundry once a week for us… it was great.  

Hospice respite was considered here too. It never actually happened but nonetheless…they did offer some different facilities we could use.  Also they said if after 5 days I were to pay out of pocket for one day, she could stay another 5 days on them (Medicare) for a total of 10… woohoo.. not sure if that’s available. It might have been because of the length of time we were with them and not having used that service in the year prior…not sure. 

Have you considered hiring in some help weekly?  I couldn’t have kept mom at home without those attempts of sanity rejuvenation away from caregiving for her. 

I’m glad for your moms pleasant moods.  My mother was mostly pleasant too.  Still sorry for your situation. It’s hard to say the least. 

HeyDforDaughter

Thank you! All very helpful suggestions.

mommyandme (m&m)

Also, the rehab place may not have been well trained for dementia.  The facilities that I looked at considering, for the hospice respite offered, were MCs.  Made me think maybe they’d take care of her well enough.  Definitely go visit the place(s) they work with prior to scheduling. 

I just hope you can get some deserved time away. 

HeyDforDaughter

m&m, I will definitely consider that (consider memory care) for respite care. I will keep you posted. Thank you.

MelindaP

I am 60 years old and my dad is 88.  He lives 4 hours from me and has no family or friends in his city.  He has outlived everyone.  He chose not to relocate to my city or my house after my mother passed in 2016 and said he would die in his house.  He has had dementia for the last 4 years and is now severe.  Visiting Angels visited him every day to assist with his meds, meals, etc, in his house. He started wondering the neighborhood and taking things from other’s porches and yards, rummaging trash and taking discarded bottles to his house to fill up with water.  My sister and I have traveled to his house every 2 weeks to refill med containers, grocery shop, house clean etc.  He has deteriorated to the point where he does not know any family members.  He is familiar with my sister and I but do not know we are his daughters.  We just placed him in a memory care center this week because he was not safe or cared for in his home.  This has been a horrible experience. I feel like we abandoned him, but I know he is in a safer place.  My sister and I will continue to visit him every 2 weeks, and his visiting angels will visit daily.  Any words of wisdom for me handling this transition?  

mommyandme (m&m)

MelindaP, 

I’m sorry you weren’t responded to. Sometimes if we start a new question on the end of a current thread it can go unnoticed.  If you hit the green button, Add Topic, at the top of the forum to start a new post with your specific situation, your post will likely get more attention.  

You’re new here, welcome, but sorry for your need to be here.  Come back and start a new thread with an update and I bet you’ll get the support needed from the kind folks here.