Am I being selfish?

Don't worry about whether you are selfish versus just engaging in self-preservation. I would also not just say she should be home because that's the ideal I believed in, or even that Mother Teresa believed in.

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.

No, you're not being selfish. When I read the messages from people taking care of their loved ones who cannot do the normal ADLs, I wonder how they do it. I'm afraid that I couldn't go that far. Some people can. I'm just not one of them. And I am far from selfish. There is just a limit to the things that I can do.

To solve the problem of your mom ripping off the depends, you can buy a jumpsuit that opens in the back, so she can't get to the zipper to take it off. If you search for "Alzheimers anti-strip clothing" you'll find them.

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...

blannie: I can't blame her for ripping them off when they are sopping wet, so I wouldn't want to do what seems like a straight-jacket affair... lol.... you are kind to remind me of that though. I have heard of it here once before.

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!

Do you ever ask yourself why you are donating so much of your life so they can sleep late and watch TV all day? I know I ask myself that a lot.

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.

No you are not selfish. It is a huge job looking after demented parent. She will need more and more care as her disease progresses. If you are finding it hard now - it will only get worse. I honestly don't think it is about what makes mum happiest (vikki and I usually agree) but I think it is about what works best for the two of you. Mum's safety, in all senses, and care are what are of primary importance to her Some people are suited to 24/7 caregiving and some aren't - for various reasons. There is no way I could care for my mother at home.

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.

I bought unstrippable clothing for Mom when she was at that stage. Took me 2 years of learning but I now put my mom on the toilet and she only poops each morning 3 hours after her miralax. I also use 2x tena diapers with 2x booster pads and she goes all night long without a change. Usually 10pm is the latest one. If your Mom still interacts, you could use daycare, I did that when My Mom could walk and talk. Hang in there and go with your gut, it only gets harder.

agreed that your marriage should come first.

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.

My, how I SO appreciate you guys. You are helping me find clarity. It seems the motivation for caring for her is not pure... it is motivated by guilt, and a sense of duty that she has always imposed on me. I am 62, and have not had a happy marriage, nor a very good life, so I think I will be smartly self-attentive (not -ish) and take care of myself and this marriage that may or may not pan out. The NH is excellent... clean, smells good, many activities, very communicative with me about every change, willing to listen to my concerns, and will bring together a meeting of nurse/social worker/myself/dietitian any time I feel the need. Maybe I should count my blessings and hang up the guilt. I will now work on how to make her happy while she is in the NH. Thank you, everyone... thank you.

You nailed it, Jocelyne, The NH sounds great, Yes, take care of yourself and your marriage and count your blessings. A rider here - you cannot make anyone else happy, You are not responsible for her happiness - only your own. She is responsible for her happiness, Don't run yourself ragged and feel guilty if she is not happy, Do what is reasonable and then let it go and get on with your own life.

As I read your most recent post in this thread, Jocelyne, I was smiling for you and then I came to the end ... you are going to devote yourself to trying to make her happy in the NH. But Golden23 already expressed my discomfort. You cannot make someone happy. That is not the nature of happiness.

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.

Golden mentions the stats on caregivers passing away before their loved ones. I think it would be sobering if we ever knew the stats on how many caregivers end up with very compromised health due to the stresses of caring. In addition, caregivers often back burner their own doctors appointments and test and such.

Jocelyn, as I am reading your posts, it occurs to me that you are expecting way too much of yourself. Have you stopped worrying about Mom long enough to help yourself, because you sound the opposite of selfish to me. The rare person(s) who can provide their Moms 24/7 caregiving are just that, rare. Even though there are more people on this forum who are in the category of super competent, efficient hands-on caregivers for their moms, even they have limitations and suffer burnout at times. Just knowing our own limitations can be a good place to start to take better care of you. Once you start liking yourself more, others follow suit.

Dementia can take many years to progress start to finish. This is not a temporary situation by any means, and it does get harder. An awful lot harder.
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.

Jocelyne, you aren't being selfish, you are burnt out from all the time you did have your Mother living with you.

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].

I'm on the same page with JessieBelle as far a ADLs are concerned. I know there are lots of caregivers who take care of incontinent elderly parents, but I personally could not go that far. I especially can't imagine getting up in the middle of the night to do it; I have enough trouble with sleep all by myself without having to wake up for someone else.

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.

Jocelyne, I agree with the suggestions above. Your mom will be cared for by trained professionals, working in shifts, with days off to rest. You will still be involved and needed. Your health will be protected. I feel guilt and I'm caring for both of my parents in their home with some help from my sister and a CNA. I wish they would go into a nursing home and hope my mental and physical health hold up until they do.

Superb support, folks... How could I ever thank you. Carlacb... You are mirroring me in a most beneficial and gracious way. Isnt it interesting how much we need each other. I am so so glad I spoke up. I wish I could throw a party for us all... LOL.... Hugs to each one of you....

From what you said, I don't think she'd reallly be happier at home just because she had more of your attention. I think that's more of what she THINKS she wants. And I think you could give her 100% of the attention you have to give, and she'd still "want" more. If your attention is a treat she gets to look forward to when you visit, she will get as much happiness out of it as if you were there 24-7 with nothing else to do.

Excellent point. This really rings a bell. She will always want more. In the NH, she gets attention from a lot more people than just me... Lol... Thank you!

Let's think about this...our parents are entitled to get their needs met. This may or may not line up with what they want. And yes, I am quoted the philosopher Jagger.

Good point, Babalou.... thank you.

Here it is September 2016 and I'm looking back at these posts. It was the right decision to have mom stay in the NH... it is wonderful the kind of help that can be had here... people are so so kind and understanding. I Just had to say so!

Jocelyn you admit to having spent many years in an unhappy marriage. Neither you or I can predict whether it can be saved so there is much work ahead of you whichever way it goes. Both you and hubby must want to save it. This is your main problem. You have arranged excellent care for your mother. It may not seem the best situation to her and most people in a nursing home wish they did not have to be there.
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.

Jocelyne- I'm glad that the decision you made turned out in retrospect to be the right one for you, and I'm glad we were able to help. Thank you for coming back and letting us know.

I'm so happy you can look back and know that you made the right decision and I am also happy you came back to tell us how it turned out for you. Thank you!