Am I being selfish?
So, I brought mom home for the weekend... and I think I will leave things as they are. Her in the NH, and me traveling to and fro to visit. I thought for sure I wanted her home until her dying day... and I'm feeling rather selfish right now. Her only problem? She can't sleep through the night without soiling her bed... she will strip off her "depends" in her sleep, especially if it's already full of pee, and she will remove the wet protective pad and take off her gown.... and lay back down with nothing on but a blanket.
This is how it is every night... or close to every night... and there's no home health available in our little neck of the woods for overnight - unless it's private pay.
I read many posts here about caregivers who have their parent home and are doing care even through the night... is that what I should do? I can't imagine waking up in the middle of the night just to change her bed/clothes/depends/ and then go back to sleep. I suppose I can always go back to sleep when she takes naps which is often, but is that a healthy thing for me?
Am I being selfish? She really is easy in every other area - outside of the facet that she's down to NO interests whatsoever except for sleeping. I don't think I can also sit with her all day just to entertain her... she won't watch TV. She won't read. She won't do puzzles... maybe it's that Cymbalta that's keeping her half-dead...
So I'm leaving her in the NH until I find another solution... Question? Am I being selfish?
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Instead, you might remove obstacles to her happiness -- advocate at the nursing home if you see she has a rash they are not treating, for example. You can provide opportunities for happiness -- bring in a framed picture from her childhood, or a calendar with kittens or horses or old barns or something else she especially likes.
You can contribute toward her happiness, but don't think you are responsible for it. Ain't possible.
But I think you're better off leaving her in the nursing home, where there are three shifts of people doing what you're trying to do by yourself. And you are NOT selfish to take care of yourself! I'm sure a loving mom would want that for her daughter. Hugs...
JessieBelle: ADL = Activities of Daily Living.... had to look that one up! The one thing that concerns me quite a bit is that my husband and me are trying to repair a marriage that has been less than ideal for 29 years. That plays into why I hesitate to keep her home. Truly, if we don't improve noticeably within 6 months or so, I may bail out. It's been too long already.
vestefans: I thank you for such a thorough answer. I know mom would be happier at home, though at home she would sit or sleep and do very little. Right now, at the NH, she gets physical therapy, eats in the DR, can engage with her table mates at meal times, and will engage with ladies at the nurses' station when put there. She has chances to mingle or sing for karaoke, or play bingo, etc, but she usually turns it all down. She mainly wants my attention more than anything. It almost feels suffocating... but I believe that can be the nature of caregiving. She has always been disconnected as a mom/person - with all her kids as well - so it's not like she wants our relationship, though I may be wrong. She just wants what she wants... me, at home, doing for her. I think what gets to me is that I feel sorry for her... like she has trained me to be. It ticks me off in a way, and I'm surprised I'm even saying this. Kind of like a new revelation. Dang, I hope I'm not saying too much!
I think the bigger question is whether she would be happier in your home than the nursing home. If the answer in your heart is yes, sure, reconsider your decision. Caregivers do get used to getting up once a night to give care, and you might be able to forestall the soiling of bedding by doing a pre-emptive Depends change at a certain hour, and adjusting meds could even be helpful for several of her symptoms that would improve her quality of life - and yours if you take her home. Does she participate in anything at the nursing home? Is she depressed or stubborn, or does not like the activities, or is it more likely she engages in no activities at all because her dementia is advanced enough that she really can't?
One on one 24 x 7 care is a lot, and only do-able at all in a case where there is not much care needed, just full-time supervision and being there to help when needs arise. It's not about you being selfish. It does not have to be about you at all, but rather the practicality of managing her real needs with the help or lack thereof that you realistically have, and what will give her more happiness and you more good memories of these months or years (bear in mind, you don't know how long it would be). Think it through. Listen to your heart. Be real with yourself. I hope you end up making a good decision and feeling at peace with it.
Jocelyn, I hope you can repair your long-suffering marriage. I think that should be first priority. I got the feeling it is going to require some long, hard work. Maybe some courtship again? Just being romantic here about getting things back together.
Sounds like your mum has a sense of entitlement to your "services", It does get very suffocating and no you have not said too much. Many here deal with that kind of family dynamic. I would back away from that real fast. Work on your marriage and your life. I see you posted while I was and mentioned the NH activities, They sound good.
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