The changes with my mom in retrospect seem so dramatic and fast...and I understand hospice is palliative so not looking necessarily to improve her functioning...but in early June at the same time we engaged hospice care, she was much more mobile and active: Regularly up and down the stairs, getting herself food out of the fridge...then there was the night she would not or could not go up the 7 or so steps to the bedrooms and spent the night on the lower carpeted steps eventually lying on the floor where I made her as comfortable as possible. Having seen similar behavior once, I figured she would get tired of it, pull herself up by the railing and go to bed...but in the morning after a night of regularly checking on her, she was still there and we called the rescue squad to help get her up. As she had been there overnight they suggested taking her to the hospital to get checked out which we did (they took her). After a day and night in the ED, there was no reason to admit her. The primary MD was an unhelpful you know what, claiming because he had not seen her he would not do a referral to hospice, so the ER doc did. Within a a couple days the hospital bed was delivered (this was early June) and she has been in it pretty much ever since. Initially the bed came with short rails. And one day when Dad went out to get some dinner and I was still working, I came down and we both spotted her at the same time...in the kitchen at the fridge. Her old routine. She had gotten herself out of the bed, around the rail and up the 5 or so steps....not to mention while in the ER, she was out of that bed and walking around and trying to take what she could off the walls:-) Now she has become this inactive bedbound person....My occasional mentions are met with how hospice won't provide PT, though families can hire privately. Some mention of a hoyer lift, wheelchair...mom is feet away from a door to an outside patio....BUT we do not know if she can hold herself up long enough to get into the wheelchair and/or back up to bed again. Who should be assessing for this, and should we? She is now incontinent it appears, in any case using a diaper/depends and getting daily attention in that regard. Also, I think hospice dropped the ball a bit. We had a home care doc unrelated to hospice come out and she discovered some drainage from a wound on her heel, on the bottom. Now being treated with bandage changes by wound care nurse...but I have to wonder if there would be pain if mom stood on the heels (both have wounds...and it is odd since they are on the bottom of her feet and not an area touching the bed...of course now we have the legs elevated to further reduce pressure on feet/heels. Just seems her life has been so diminished with the introduction of the hospital bed, the only reason for which was her not able or willing to apparently do the stairs....anyone experience something similar that can enlighten me?
my friend is home with hospice for her husband (who has brain cancer) and she did express to them how much he enjoys the outdoors and so they brought the hoyer in and make sure they help her get him up in his wheelchair and get him outdoors every day if they can. But she did have to insist on it. They did question “the need” and she said until my husband is expressing pain or being uncomfortable in the process of getting up or being in his chair then she wanted him to have that - she is the one who knows him best and his wishes and what he enjoyed and until she feels it isn’t enjoyment anymore then she did insist it be part of his visits. He also had PT taken away - but they did add in massage as well as reflexology which he fully enjoys as well (you could ask about that if you think that is something mom would like to try and see if you saw it brings her relief or happiness and peace?
I know my mom (before her stroke and now) loves being outdoors no matter if it’s an hour or many hours - it’s who she was before her stroke and her whole life - I think my mom would be happy (when the time comes) to pass in a wheelchair smelling the “fresh air” as she puts it. So if you feel it is something that could bring quality to moms days then I would ask if they could provide that for her and just see if you see her feel peace and comfort from
being outdoors or on the patio. 🌷
"Caregiving for dad age 104 and deaf who thinks he's quite capable and independent, and mom who is 98 has dementia..."
I help my 99-yr old aunt with mod/sev dementia who has diminished mobility due to falls (breaking shoulder bone, breaking knee cap). She has no real other health or medical issues so we have an agency caregiver come in for 4 hrs during the day to get her up, engage her mind and give her showers. There is not going to be any "progress" for her, just protecting her and keeping her comfortable. She still recognizes/remembers her immediate family but her dementia personality is taxing. She doesn't really qualify for hospice yet. Her older sister (with very little dementia) is 102.
What is the outcome you are imaging for your mom at her age? With my aunts we take it day by day and try not to project our desires for her daily life onto her reality. Wishing you clarity and peace in your heart.