Good news! Hospice care!

oehlsena

Hello. I have tried updating since last summer with moderate frequency since we moved our LO into our home from her assisted living facility. She was deemed "pre-hospice level of care" in January 2022, and just last month she was deemed hospice level of care. She has mostly lost the ability to move on her own. 

It is wonderful to have them helping out. She has nurses, a chaplain, a case manager, social worker, and 24/7 call line. They've been helping us with supplies, are ready to listen, and ready to offer advice for problems. On Wednesday, two nurses unexpectedly showed up and helped her take a shower, and she seemed relaxed and happy after their care. They were quick and professional... 

I have definitely needed their assistance this month. Our LO had bowel incontinence 3 times in about the last month and half. For the last year it has been once every 3-4 months. It was big messes.... I spoke to her nurse about it. I haven't mentioned yet,  but if her bowel incontinence continues on this trend I will be expecting her to have a nursing home placement because I will not be willing to provide that level of care as her primary hands on caregiver. Sorry! That is just out of my range. I have spoken to her case manager and nurses about her stiffness and soreness. I have told them that it is difficult to move her and that if she becomes bedbound (can't be assisted to the toilet) that I won't be able to care for her any longer (I can't lift her and we can't afford to hire other caregivers). 

We're in a painful spot of her just getting stiffer, but still trying to keep her as mobile as possible. She can still be lively and put down a double streakburger from steak and shake in under 10 minutes. She surprised me by picking up the donut I was feeding her this week and slooooowly taking a bite before accidentally dropping it.... and then picking it up again to take another bite! She still has moments of seeming lucidity, clarity about movies and songs, etc. 

So thankful for her hospice team. 

mommyandme (m&m)

Thanks for your update! So glad you have the support you need from hospice. 

I would definitely start the placement plans.  She is probably only going to decline from here. The hospice service will move to the facility when she does and maybe even the current team if the facility is in the same area of service. 

oehlsena

Yes. We already have nursing home placement as our emergency option if we can't provide care any longer.... I will be sure to speak to her nurse about it again

SusanB-dil

oehlsena - I know that is such a relief for you!  That is great news.