This sounds really horrible, but I don't want my mom to come home for hospice care. I know it's absolutely going to destroy me, seeing her hour after hour in her state. She has dementia and I don't even think she will be that aware of her surroundings at this point, but my siblings are pushing for this as of earlier today. Of course they're going to force the decision on me since it's my mother's house, but I am tapped out emotionally and physically from the 3 years that I cared for her before she had to go into long-term care. I also have trouble with having strangers in my house or even siblings coming by at whatever hours. I am an introvert and not being able to have any time to myself is going to take a drastic toll on my health. Has anybody else gone through this?
If she needsx24/7 care now, how will that be managed and paid for at home?
I never felt that the impact of caregiving, hands on type care was well explained, nor the process if there were any issues or concerns. I also find the aides visits daily somewhat disruptive, personally speaking....and I have used space here to vent about my dissatisfaction with how their tasks were done HOWEVER, I have learned a great deal, I would ask specifically about my how concerns are handled prior to the start, I still don't have a handle on what exactly mom should be getting as far as say a wheelchair/lift or if either are appropriate for her. And yes, I do have concerns that one of the aides has taken something of low value, which concerns me of that sort of personality being in my home, but all that said, I am grateful....they have been reliable even if tardy from time to time, they seemed to have tried to improve their behavior after someone in authority must have spoken to them...this was in regard to not being sensitive to my mom's feelings...demented or not I felt her privacy concerns she still managed to convey were not being as respected as they should have been. SO I have learned one should speak up immediately if you see something happening you don't like. As in PLEASE wipe your shoes when you come in; PLEASE don't put a drippy basin on the antique wooden desktop etc. Hopefully the pattern will settle in such a way that the visits will be on a predictable day and/or time and they will let you know in advance...but it sort of feels like THEY have control. I would imagine one could lay some ground rules about not before X AM . Rest assured THEY have a schedule and other people to tend to and they will not be presenet any longer then they have to be. SO you are likely to still have much of the day to call your own, it just may interrupt your routine. DO make sure you understand the expectations of your providing care and make it known if you have health issues of your own that could be impacted. For instance mom developed some wounds (i.e. bed sores) on the bottom heels of her feet...which im humble opinion I think should have been spotted by the aides or someone...it was a home visiting MD that spotted the issue when we saw a stain on the bottom sheet. I made it clear that I was not up to the challenge and that if the current aides were assigned that task of bandage changes, I would be requesting others or changing agencies. I did not feel up to the challenge myself, although I knew I couldn't do it with any less compassion/empathy than what I had observed in the routine personal care the aides were providing. AND THAT is a very big thing we are appreciative of, as mom would not allow us to tend to that type of care and it is clearly much needed based on her incontinence issues. In the very beginning they made me feel we'd need to find some private hire help to supplement their care and that really was a challenge to contemplate as well. Private hire is typically in the $20/hr minimum range and they now often have 4 hour minimums. Although we didn't pursue it, it would be nice if they had aides working longer shifts so help could come more often to assist, but I know we are blessed to have what we do and that thus far it is working. I would guess that your mom may not want you watching her all the time, so you can go off; she may be comforted by you and her surroundg
First, it depends a lot on ‘how long’. You can cope with most things for a week (or two), but some hospice is much too long to push yourself so far.
Second, if it does happen, get each sibling to come for at least a planned overnight. My sister did that for me, and it let me go away for a weekend that was a life saver. ‘Dropping in’ is worse than no support at all – you end up being the host, the explainer, reliving for them all the bad bits that have happened in the last few hours or days. Insist that they only come when planned, and at least long enough for you to go away. Just leave clean sheets out – they can remake their own bed.
How can you put a time limit on this? ‘I’ll do it for 2 weeks, after that you must either take her, move in here for 2 weeks while I leave, or arrange for her to return to care.’ Put your foot down!