Mom is now in hospice -- new issues!
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??
Regarding water: see if you can find a cup holder that attaches to the side of the bed; put a cup with a lid and straw in it so that all she has to do it turn the head, put her mouth on the straw and suck. In the mean time, when she calls you for help, verbally coach her through doing it, don't do it for her. It will take 4x longer, but she may learn to do it for herself. It's also a way to ensure your attention, to call you to her side every 10 minutes or so. So when she does that, ask her to work for what she wants by even taking her hand, molding it over the cup and moving her arm and cup to her mouth. Or ask an OT to come in and help her do this herself. There are some mouth moisturizing rinses/toothpaste on the market now, too. To cope with the dry mouth issue . Consider if she is too much for you at some point and what you plan to do about that. Good luck with a difficult situation.
My mother was on hospice with no guardian and not even a POA.
What would guardianship enable you to do that you can't do now? Why are you seeking it? It is a legal process and would have to go through the courts. Perhaps there is a quicker, less expensive solution to whatever your need is.
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 :)
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.
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.
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!
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?