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?
26 Answers
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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.
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!
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.
Having your sleep interrupted regularly is not a healthy thing for you or for anyone. The latest figures show that 40% of caregivers die before the person they give care to. This is from the stress of caregiving I am sure. In the NH she gets trained professionals caring for her and you can visit as often as you want to and then go home and get your sleep. She may get more stimulation there than at home with group activities. I think you have made a god choice as long as the NH is a decent quality.
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.
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.
Dementia burns low & slow. It's not like microwave popcorn.
Having your mom at home means she is physically near, but is it worth turning your home into a mini dementia unit? I would have a sideways cow if my husband had brought his mother into our home for that kind of care. Home is my sanctuary from the world. That would be a deal breaker for me.
My mother is in a nursing home, and it's for everyone's best interest. They catch and treat problems faster than I would. Looking after her is their full time job, not a job in addition to their full time work. They can get her meds faster than I can, they have a hotline to the doctor that I don't.
There are structured activities by a person whose job it is to come up with and do those activities. I bet there are 25 people a day involved in my mother's care.
I couldn't possibly replicate what 25 people are doing for her around the clock.
Please be aware that it is **very** common for our folks to act differently for us than they do when we aren't there. There are more stories on this site about that than Carters has liver pills.
My encouragement to you is to let go. Keep a journal and write about what you feel at the moment, and think about why. Often our feelings of simple guilt are not at all simple and are a ball of many different specific things from the past.
Different triggers that were programmed into us from day 1. Our own self-talk about being inadequate. Fear, regret, and 100 other feelings all rolled into one: Guilt. I found it helpful for me to take the guilt apart and deal with each thing one at a time.
Letting go of these complicated negative thoughts and feelings is hard, but you can do it. It takes practice, practice, practice. You will become a lot stronger in the process.
My boss's wife had Alzheimer's for 15 years, and eventually he had to hire a day time caregiver to help him so he could continue with his work. Thus, he did the night shift but majority of the time he was getting his wife up to change the sheets, put them in the washer, and because her briefs weren't doing the job he was going in the shower with her to help get her clean. Most days he was exhausted and it showed at work. He refused to put his wife into a memory center, therefor he was hurting himself as his health suffered.
I still feel that seniors should not be caring for older seniors. We just don't have the energy we had 20 years ago to burn a candle at both ends. I know my health suffered big time and here my parents weren't living with me, it was just all the demands and guilt if I said no I couldn't do this or that.... [sigh].
But I hear a few other issues underlying your reluctance, Jocelyn. One is that you're struggling to repair a troubled marriage. That certainly can't be helped by having a needy full-time roommate who wants your undivided attention. The other is the resentment I sense over the fact that your mother wants your attention and services even though she seems to have little attachment to you personally. I can relate to that - I have a similar relationship with my mother. She wants my attention and my help, but I don't ever feel she cares about me at all. I do feel sorry for her and responsible for her, but I know she plays on that - it's what she wants and expects me to feel.
I think a nursing home is a godsend in a situation like yours. I think you are blessed to have the opportunity to get some healthy distance from your mother. If I were you, I wouldn't throw that away.
This is nothing for you to feel guilty or selfish about. it is a fact so just be thankful Mom is being well cared for. If bringing Mom home for the occasional week end works for everyone concerned by all means continue with this occasional treat. Just do not do it at the expense of time spent alone with hubby.
Caregiving can act like a cancer consuming more and more of you. You have seen the symptoms so do not ignore them.