Mom is now in hospice -- new issues!

Started by

Feel like I've been on here a lot lately with questions ....

Week and a half ago, Mom fell while I was trying to transfer her from commode to her rollator. Not a hard fall, as I had hold of her but could not hold her up when she bent over nearly double. When she went down, the outside of her lower left leg rubbed or hit against the strut of her rollator and she sustained a skin tear about 7 inches long and 4 inches wide on that lower leg. Called for ambulance, she was taken to local hospital ER where it took the med technician about 45 minutes to carefully put skin back in place and suture with Steri-Strips. They had no beds available, but I told them I cannot take her back home as I can't support her weight if she can't stand long enough for a transfer. We had Hospice already scheduled to come the next day to talk with us, so the hospital called Hospice and they sent someone out around midnight to the hospital to get the paperwork done. Mom was transferred to their nearest Palliative Care Unit for 2-3 days for evaluation, and brought back home this past Friday.

Hospital bed was delivered Saturday, she refused to use it, it was Monday before I got her into it. It's so much easier and safer for me to take care of her in the bed in terms of changing her when she's wet, not needing to get her up and down, keeping her feet elevated more, keeping her upper body somewhat elevated to make breathing easier most of the time, etc. She does refuse to have BMs in the diaper, but we've worked out a way for her to fairly easily transfer from bed to bedside commode for that.

Unfortunately, the hospital bed also brings with it some new issues. She wants to sit up ... 30 minutes later she wants to sit up higher ... the bed only allows to sit up "so high" and that's not good enough and a pillow at base of her back does not prevent her slumping. She's not tall (about 5'3") but even when sitting up and back as far as the raised bed head will allow, her feet press against the end of the bed which is uncomfortable when she wants to stretch her legs out straight. She wants her legs raised ... she wants them down a little bit ... no, down a bit more. She wants to sit up on the side of the bed and let her legs hang down ... now she's cold and wants a blanket over her lap for that ... she's still cold and wants her feet and legs lifted back up on the bed under the covers.

It goes on and on. I've got lower back and left hip strain from the struggle getting her transfers done last week before the fall, and I'm getting muscle cramps in weird places. Typically we both take an afternoon nap of a couple of hours each day, and she has interrupted me so often during my attempts at nap time, as well as waking me 2 or 3 times at night that I'm starting to have some noticeable sleep deprivation stuff going on. All the interruptions are about the above-noted sorts of things, to raise or lower this or that on the bed and so on.

She can't use the bed control herself, it is too complicated for her and she'll drive herself nuts if she tries. She was already having problems with the control on her lift-chair which was simple. *I* have some problems with the bed control, not yet sure which arrows address which things, so I know for sure that I can't hand it to her and tell her to set the bed where she wants it without my help.

Any ideas??


No ideas? I'm getting no sleep here, folks ... got 3 hours last night (broken by calls from her to come do this or that), tried to get a nap today, lay down and 15 minutes later she called me to come do something. Did that, lay down again and in another 15 minutes she called me again. I'm starting to forget which pills I've given her already and which she still needs to take, not to mention completely forgot to take my own meds today.

Hospice has someone coming every day right now, but these are nurses, the care manager, social worker and etc. They do have volunteers who can provide respite care but those folks don't stay overnight and can not do anything that requires patient-handling (no changing diapers or feeding, not sure about adjusting the bed and giving water). The doctor accelerated her Lasix, doubled the daily dosage from 40 to 80, so her body is getting rid of water and she dozes with her mouth open and gets thirsty and so then of course wants water and more water.

Does anyone have any ideas at ALL?
Not really. End of life is tough. Hugs.

It would help if you had someone (CNA, PCA) coming in for a few hours each day so you could sleep and make up for the night interruptions. When my husband was on hospice I had someone about 6 hours a day. It was kind of boring for her because he slept so much, but she was good company for him when he was awake and it gave me a lot of respite.

You can ask the hospice nurse what you can give your mother to lessen agitation, if that is her basic problem.

Hugs to you!
if you are getting muddled with the pills put them in one of those daily pill containers, that way you can see what you have given and what is left, I did that myself for a while when having a brain freeze.
Would she be able to still spend some time in her recliner each day? If she wants to sit up it would be more supportive than the bed. As Jeanne says, perhaps some help to accomplish this? And they should be able to give some suggestions to help keep her sliding down in the bed.
Perhaps the biggest problem for you is your own anxiety (and guilt over the fall?) which won't allow you to let some of her needs go unmet. You really can't cater to her 24/7, even if you want to. Give yourself permission to take a break and get some sleep, see if meds for her or a sitter will help with that.
Thanks, jeannegibbs and cwillie -- I called the Hospice night nurse at 3 AM this morning, and she advised giving Mom some of the Lorazepam that was delivered yesterday. So I did, and after about 20 minutes Mom dozed off. I crawled into bed around 4 AM and got some sleep. Apparently the Lorazepam can be given every 4 hrs as needed, and while I don't want to "knock her out" all day or anything, it's good to know I can give her some so we can both actually sleep for a while.

Will talk to her case manager today about the Lasix increase and get an okay to drop it back to a level lower than 80 mg a day. The main problem last night was Mom calling for water every 5 minutes or so (not exaggerating about that). If I can get some food into her today, that will probably be of some help too.
I'm so sorry that you and your mom are in this situation. Re the water: When my dad couldn't get out of bed safely by himself, we put a TV tray by his bed and put a child's disposable sippy cup (with lid and straw) filled with water and ice on the tray. There are swing arm trays designed to fit over hospital beds. Would hospice be able to obtain one for you? You could place a cup of water, Kleenex, and so on, on the tray so that your mom could reach those items easily. Is your mom strong enough to reach out and pick up a cup from a tray?
AZLife, I can relate to the hospital bed issue.... my Mom was less than 5' tall as she had gotten shorter over the years. And the bed wasn't that comfortable. My Mom was always asking to adjust the bed over and over again. Her back was always hurting, so was her tail bone as she was very thin. She was constantly trying to find a comfortable position.

And I could relate back to when I was in the hospital, as I am not tall and with the bed in a position where the head was up, I felt like I was constantly sliding into a "ditch", and it was difficult for me to pull myself back up.

When my Mom would doze off, she also would sleep with her mouth open, thus she was also asking for water. Mom didn't like food, but she would take Boost but only if it was put into a cup with ice.

Even with my Mom being in a nursing home, I still wasn't getting much sleep, worrying about what the next telephone call would bring. Mom was under Hospice so I was relieved she had another set of eyes and ears to watch over her :)
AngieJoy -- do have one of the rolling hospital-type trays that will fit over the bed, and also a sippy cup, and so I can put the cup and her Kleenex right smack in front of her over the bed and somehow she can't find those items. She can follow my instructions when I tell her to roll "this way" and then roll "that way" while changing her brief, pads and sheets, but she can't seem to follow my instructions when I tell her the table with water and Kleenex is right in front of her not 5 inches away. Not sure what to make of it, but most of the time I've been having to hold the water for her when she drinks and hand her a Kleenex when she wants one. Her hand grip and forearms are pretty strong when she wants my hand to pull her up a bit or more forward a bit.
My mom was a fall risk and never wanted thre bed rail up. She tried getting out of the bed to pee and we were up 2-3 times bc she had fallen. Finally, I put my foot down, it's sad to see her resigned to me but she has fallen. But she still woke up and complained about the wet diaper or she wanted to pee. She too is immobile and hard to move to commode etc. I had to break through my resistance of using the Lorazepam but she takes it every night and we all sleep through the night. She is wet in the morning and sometimes everything is wet but that beats being up all night. Hugs to you!
Hello i need Information on how to get guardingship for my mom whom is in hospics
Tracy, why do you feel you need guardianship? It's a rather complex and sometime lengthy legal process. Is your Hospice organization suggesting that you need it because no one has PoA?

Keep the conversation going (or start a new one)

Please enter your Comment

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support