Feeling Guilty About How I Feel...


My 81 year-old mother has ovarian cancer and mild to moderate dementia. I am 58, a retired teacher, and a substitute teacher since I retired. I have 2 siblings. Two of my grandchildren (ages 7 & 9) live with my husband and me. When my mom lived alone in her house, it was 50 miles from me and 5 miles from my siblings. When mom was diagnosed, I left my own home during the summer to live with her, manage her medications, take her to appointments, and basically take care of her daily needs. When we finally realized that mom could no longer live on her own (not eating properly, forgetting meds, managing finances, etc), we looked into assisted living facilities. My mom was totally against going to assisted living. I felt very bad about this, and even though our home is only 1200 square feet, my husband and I decided to move her in with us. I gave up my substituting job, but mom agreed to pay me the income that I lost. She has lived with us for 9 months now. I feel so guilty admitting this, but everything she does gets on my nerves. I can't even stand to hear her walker rolling across the floor anymore. I am at home with her every day, and have not spent one day alone in my house since she moved in. My husband and I have not been out to eat alone together in 4 months nor have we even made plans to do anything. My mom was the best mother in the world! She spent her life caring for her family and never cultivated any friendships. I have tried to get her interested in activities/hobbies, but she has no motivation to do anything. She is interested only in what we do. It seems that there is no privacy. She just stands and watches us. I tell her I will take her anywhere she wants to go, but she never wants to go anywhere for herself...but she always wants to ride along with me to run necessary errands. So basically my life is getting up early to get the kids off to school, staying home/caring for mom during the day, and then caring for kids and mom when school is out. I feel so guilty about my negative feelings towards her, especially since she was always so good to us. My 2 siblings have not once offered to have mom come to their homes for a weekend so that I could have a break, but then again, I have never asked, either. Are my negative feelings towards my mother normal? I feel so bad every day.

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Yes I think negative feelings are normal. I had to take Mom in after babysitting for Gson for his first 18 months. Was just about to ask daughter when she was putting him in DC because I wanted my retirement back. Then we determined Mom couldn't live alone after a hospital stay. Being the oldest living in the same town and the one she always depended on, I took her in. I resented being always the one. DC helped but it was taking care of someone who had Dementia. All I saw was an elderly lady who was getting frailer every day. This woman was no longer my Mom.

Oh boy does this hit home. I felt exactly the way you do when i was caring for my mom before she passed, and now I’m dealing with an ungrateful sibling who didn’t lift a finger to help care for our mother but now needs help herself. It sucks, but please know you’re not alone!!!

My mom ( 87) lives with my hubs and myself, and my 84 yo aunt lives alone with daily check ins from some of her kids. But we all need breaks, so every 6 weeks or so we have Aunt come here for a week, and then later mom goes to visit her. We also take Aunt on all our vacations, she and mom entertain each other, and so hubs and I get small breaks . Right now both are visiting a cousin in TX.. and maybe for 6 whole weeks!! We all just keep them as busy as they want to be (casinos, light sight seeing) and we all get some couples time. You wont know unless you ask!!

About your siblings:

"My 2 siblings have not once offered to have mom come to their homes for a weekend so that I could have a break, but then again, I have never asked, either."

Have you ever thought or said about your husband (or someone you dated before that) "If he really loved me he would know what I need. I shouldn't have to tell him!" That is pretty common in romantic relationship, especially among the very young. But it is totally inaccurate and can cause a lot of unnecessary stress. If you really loved him you'd tell him what you need! Even very loving and thoughtful people can be clueless about other's needs and expectations.

I don't know your siblings. Maybe they are selfish, stingy, and lazy. Maybe they didn't have as wonderful a relationship with your mother as you did. Or maybe they are compassionate folks who are clueless. Give them the benefit of the doubt and ASK them for help before you write them off as selfish. Don't expect mind-reading.

My mom moved in with my newly retired sister. It seemed to be going well. I invited my mother over for a weekend. My sister was thrilled. I suggested that we set this up for a monthly event. The third week of each month she could bring mom over on Friday and I'd bring her home on Sunday. Another sister saw that example and also volunteered for a weekend each month. The third sister came to stay with Mom for shorter periods throughout the month. It would simply not occur to most people to volunteer something like this. You seem to be doing fine with Mom. You took this upon yourself; it is what you want to do. Sibs are glad Mom is being taken care of.

So how come I thought of it and volunteered? I'd like to say I'm a nicer person than most. But the truth is I had had ten years of experience taking care of a loved one in my home. I knew what it was like and how critical respite is. Notice that once the other sisters had the example they pitched in, too. They just didn't think of it on their own.

ASK your siblings! Be specific. Not just "could you help me?" but "could you invite Mom over for the weekend after next, or the following week? DH and I need a little get-away." If the answer is "I'd be glad to, but I can't those weeks," make a note to ask again next month.

Give your siblings plenty of chances to do the right thing. And if they just don't, then consider yourself an only child as far as care of mother is concerned. You still need respite, and you'll have to find other ways to arrange it.

But give your siblings a chance!

Thank you all for your responses. Each one has helped me very much....mostly, it has made me feel better in knowing that I am not alone in my feelings and needs.

I agree about getting some time for yourself and your marriage. When people have dementia, you can't rely on them to be sensitive of your needs, aware they are crossing boundaries or concerned that you get time off. Hints mean nothing. They likely don't even think about that. That's why we have to think for both and use our good judgment, since they no longer have much.

If the roles were reversed, you wouldn't think it was right. So, I'd set things up so that's it's more reasonable. Yes, she's good and a good person would want to do right by you. So, I'd make sure that happens.

I'm not sure about feeling bad every day. You're doing so much and feel bad? That's hard for me to wrap my brain around. You should be proud and happy at what you are doing. Maybe, you are overextended. I'd look into that. I've read that caretaker fatigue can make you feel guilty for no reason. I'd try to get some help to get past that. There is so much stress and work involved, I'd think that peace of mind would help you.

Oh, I'd also look at some videos about dementia on You tube by Teepa Snow. They have some techniques that might help. It's not uncommon for dementia patients to shadow or follow behind their caretaker. It can be addressed though.

YES, your feelings are normal. I almost could've written it myself, except for the details - I'm not married, there are no kids around, and my mom has end stage renal failure and dementia.

jeannegibbs is absolutely right - you NEED some respite, and you MUST find a way to get some. ESPECIALLY if you are determined to keep her at home. If your mom has any funds, this should come out of her money - all her care needs should come out of her money. But find a way to do it either way. Just because she is paying you doesn't mean you don't get to have a break. Every paid worker in western society gets breaks of some kind, and vacation time too.

Adult daycare may also be an option for you.

I don't know how big your home is, but if there's any way you can find a space to carve out for yourself, do it, and make it off limits to your mom AND the kids. Any small room, like a den or a spare bedroom, even a big closet you can stick a desk or a chair in.

One of the things I've had to do, that made my life a little more sane, is to implement and enforce really good boundaries. "NO, mom, you CAN'T come with me today. I need some time to myself." "Mom, this room is for me, and I really just need some space and private time to be alone with my thoughts." And stick to your guns.

You don't say whether or not your mom can be left alone, but if she can, then you MUST take advantage of it by not taking her with you everywhere. You just have to refuse. It might be hard. She might resist. But you have to do it anyway if you want to reclaim your life even a tiny little bit. And if she can't be alone, then find a way to get that respite.

Home support - and lots of it - is the only thing that's saved my mental health.

I don't know why your grandchildren are living with you and your husband and not their own parents but I assume the reason for it is painful and that there is a lot of hurt there for your grandkids. Something bad happened. Their mommy and daddy don't take care of them like other kids' mommies and daddies do. So now their loving grandparents are stepping up and taking care of them, and frankly I think their needs come before those of your mother.

Maybe your mom needs to be in assisted living nearby, with you visiting and overseeing her care, but with you also freed to focus on the young children in your care.

Oh Lonestar- You are not alone in this. I feel bad everyday for having any negative feelings towards my Mom. She too was a great Mother and sacrificed all herself for her family. I know your pain. I love her dearly and feel awful everyday, because of a negative thought. I pray a lot, and God is what gets me through daily. But I do believe for our situations, it is normal. I just try really hard to get the negative out of my mind quickly and put something positive. I usually tell myself, I would rather have her doing such and such, than not be around to do such and such.
Best wishes to you. It is a true labor of love.

The thing is, your mom has no one else to focus on but you and your husband. If she was in assisted living, she'd be around others her age and there would be activities and dining where she could be around other people and make some friends. She's pretty isolated with just you.

I totally get that you're trying to do the right thing by your mom (and your grandkids) but you and your husband are important in this as well! Your relationship is the foundation to everything else. You have to take care of yourself. This is a marathon and not a sprint. Your mom could live for another 10 years. Where will you be then?

At a minimum, you need to have regular time away from your mom and your grandkids with your husband and/or by yourself. Even better, please reconsider assisted living, whether mom wants it or not. Sometimes our parents lose the ability to see what's in their best interest. When that happens, we adult children need to act on their behalf to do what's right for them. {{{Hugs}}} this stuff isn't easy!