Frustrating Night

Sue
full_moon(Editor's Note: Today, Sue, who cares for her parents and her daughter, begins her blog. You can connect with her at her profile: @2ndheartmom.)

I don't know if it is just me or if finding good care for dementia sufferers is just really difficult.

I am staying with my mom for the next five days while her caregiver is on vacation and we went to see my dad in the board and care facility he went to a couple of weeks ago. Prior to going to board and care, he was in a skilled nursing facility for about six days after a three-day hospital stay for UTI.  Before going into the hospital he was able to walk, with assistance, sit on the couch during the day, drink out of a glass when given one, etc. He is now pretty much catatonic in a hospital bed.

They have changed his medications multiple times in the past three weeks but he is still extremely combative when they attempt to change his "diaper" (I really hate that they call it that - is that weird of me?) and the women caretakers at the board and care are afraid of him (their words, not mine). So, I don't think he gets changed all that often.

My mom's caretaker takes her over every morning and every evening and they often end up doing the changing, feeding him, etc. In fact, the caretaker was asked by one of the board and care workers to come when my mom was out of town because she "needed her help."

There is no record keeping at this facility from what I can see. When we asked if he had a bath today, the two people there said they didn't know because they just came on this afternoon. It seems to me that the most basic of requirements is some kind of record keeping. The woman there tonight did not know that my dad did not talk or really understand things. When we said he no longer talks, she said, "Oh, he can write notes to me on a board then." No one had told her that he had lost his cognitive abilities to communicate a while ago.

It is frustrating because my mom is paying them to "care" for my dad, but there is no record of the "care" he is receiving while there. It is also frustrating because he can't talk or remember. Tonight my mom asked if he had eaten dinner and he said no, but the caregiver said that he had eaten well. I obviously believe her over him, but some kind of record keeping would be nice in this instance. So no one really knows how often his "diaper" gets changed or he gets bathed or he drinks water, which is seemingly important for someone who has been hospitalized twice in the last few months for UTIs), etc.

My mom is fighting her own battle against cancer. Her CAT scan tomorrow will see if the new chemo is working to stave off the latest tumors. We are now into well over a year of chemo, with three or four different kinds. She just wants my dad to be cared for and comfortable. She knows he is difficult to work with, but she chose to put him in a board and care because supposedly they would be more able to care for him than the caregivers we had at home. Now the caregivers are having to go to the board and care to "help" them care for him. We are thinking of bringing him home again, but I don't know how one person could care for him. I have looked into facilities, but we're all a bit gun shy after the skilled nursing facility and board and care experiences we've had. I just don't know what to do.

So, I sit here, wondering what I can do in these four days to:

(1) make my mom a little less worried/lonely/frustrated,
(2) figure out what the best thing to do with my dad is. We've given 30 days notice to the board and care because they just don't seem to be able to provide the level of care he needs, but we have no idea where to go from here, and
(3) what I can do to be less stressed out than I have been.

I realized today driving here that I am exhausted, anxious and somewhat depressed about my parents' situation. I can sometimes put it out of my mind for a little while, but every time I talk to my mom it all comes crashing down on me. The fact that she will probably only be with us for another year or so. The prognosis, even with chemo was six months to a year. We've heard this before and she has lived on but, this times it just seems more final. The fact that if that happens, my sister and I will have to figure out a place for my dad that we trust and can visit enough to make us feel comfortable. My other sister and brother are basically uninterested in helping out/visiting/caregiving).

I have really been working on being more positive and happy, but I often fail. It isn't really the time commitment of care since I'm far away and only get down here every so often and my daughter is relatively well right now. It is more the emotional strain of all this happening and not being comfortable with planning anything because I have no idea what might happen.

It is the same way I felt for the two years after my daughter's heart transplant. We were in and out of the hospital, she was sick a lot (still is really). I just never felt like I could plan more than a day in advance for anything. I feel like I'm back in that position again. I've become a commitment-phobe because of this. Sometimes I think it is just an excuse, but other days I feel like it's real.

So, there you have it. My night. Hopefully the scan goes smoothly tomorrow although, the stuff she has to drink makes my mom have diarrhea and feel horrible all day, so that will suck. And my dad at least appears to be cared for tomorrow when we go to visit him.

Question:  Is it appropriate to take a care binder to the board and care and ask them to record his care in there? My mom said she didn't think they would do it, but I don't think it takes that much time to write the time and initial when he is provided with care. It just seems like basic record keeping for health care reasons.

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