I feel so guilty


I think this site is going to be a lifesaver for me. My mother is 92. She's actually amazing. She has always been very independent since she divorced in her 50s. Five years ago, I lost my house to the housing crisis. I also lost my job. I moved in with mom. It's not the first time my mom has helped me. She has always been there for me and I've stayed with her before during life transitions, but never for this long. She clearly has gradual dementia. She's lucky though, because two of her brothers died of Alzheimers and it's definitely in her family. She has always been very fit and has taken good care of herself. I worked off and on for a couple of years after I moved in with her but I finally took my Social Security and I started a business 2 years ago. I'm 66 now, by the way. Mom is becoming more and more forgetful. She stopped driving over a year ago after having a pretty bad accident which she caused. Losing her ability to drive (her car was totaled) has been very hard on her. I take her everywhere. She wants to go with me whenever I go just about anywhere. I feel very guilty that I don't always want her to go with me. I don't get much alone time. She doesn't really need much personal care yet. I pay all of her bills online but she obsesses over the bills and junk mail she still gets in the mail. I'm thinking of changing the bills to paperless. I was glad to see in another thread about "creative caregiving" where you sometimes have to sort of trick them. She is hoarding things in her bedroom and it's beginning to get dangerously crowded in there. I want to get all of that cleaned out but she is resistant. Bottom line: She's a wonderful person and a wonderful mother and I feel stressed and impatient and I feel really guilty for feeling that way. Plus, it doesn't help that my family (my kids and my sister) aren't very understanding of my stress. I've found that I can't complain or rant to them about her at all. She is understandably very loved and admired by the family. It makes me feel very alone plus I feel like I'm losing my best friend and biggest advocate and gaining a young child to take care of. I'm not taking very good care of myself. I've never been good at caring for others and also caring for myself. Thank goodness I found this group! I can see that you all "get it" when it comes to these issues.

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Hi Robin, I also have an amazing Mom who until a couple months ago lived in a small apartment attached to my house. Over the last couple years she gradually got more forgetful, until this summer it got to the point where she could no long drive or safely use the stove. She was becoming more and more dependent on me for socializing. I took over all her bills (she was grateful for that) and finally had to be responsible for making sure she had meals.

I am somebody who needs a lot of alone time, and the drip drip drip of Mom's needs all through the day (sometimes as simple as coming over to talk) really took a toll on me. I started to cringe every time i heard the door between her apartment and my place open. And this is a wonderful, kind, interesting woman who was doing nothing wrong. I felt so bad and guilty.

I started seeing a therapist for the stress of taking care of Mom, and also other issues in my life. It was so great to have someone to vent to. I have wonderful siblings who have been grateful work the work I was doing, but who would get tired of me complaining. So that is one option to consider, just to have someone to talk to. The first time I went I left her office feeling SOOOO much better.

But she in fact encouraged me to plan to have Mom live somewhere else. As she put it, by feeling all the stress of taking care of Mom I was starting to resent her, rather than enjoy her. If Mom had somebody else helping her out with all the daily living things, I would be able to go back to enjoying my wonderful Mom.

Fortunately my siblings completely understood (I am very lucky that way). With the fast downturn this summer we all agreed that assisted living was the best option. Since then she has been staying with a couple of my siblings while we wait for an opening at our AL of choice, which is giving me a break. Mom, ever the amazing woman, is rather confused by it all but is trusting us and making the best of things.

And now I enjoy our visits and talks on the phone.

I hope you find a solution that works for you. You may have to move ahead to find another place for her to live, even if your siblings disagree with the need. Maybe you need to go on a long vacation which will require your siblings to take over, so they understand.

Best wishes!!!

Hi Jeannegibbs. Wow, that's one way to make everyone sit up and take notice and learn to appreciate you! Hmm. I'll keep that in mind going forward! Thanks!

Carla, thanks for your comments. I guess it's common to be the only caregiver of an aging parent when siblings don't help and family judges you and doesn't understand. I had no idea this was such a pervasive problem! I'm glad we have this forum.

Thank you Sue! I can't believe the way people instill guilt in others! And honestly, I don't think I'd want my kids to have to take care of me if I got to that point. If they could put me in a nearby comfortable, nice facility, that would be better for everyone! You're right. No one understands until they have to deal with it!

Hi Robin,
 I am a 60 yo only child of a 94 yr. old mom with Alzheimer's stage 6. She was in a memory care facility for the last 2 years for her own safety and because I have to keep working. While she was there, my Mexican mother-in-law visited her. The next week she told me "It was so sad for her to live like that." and that she would never want to be put in a place like that. I tried to explain her advanced dementia with confusion and that I had no choice.

When Mom's rent went up too high at the memory care facility, I thought hubby and I would try to care for her. My M-I-L's statement was haunting me in the back of my head and she was happy to hear that Mom would be at home with us. We took her home and found out that her care was WAY beyond what we could do for her, let alone the fact that she screams at the top of her lungs at 2 am and pulls her diaper down and peepee's all over the floor! Aaaahhhh!
We lasted 3 months and thought we'd need to be put in the insane asylum. We found another facility closer and less expensive than the last one. Except for knocking her noggin' and getting a black eye, she looks great. Actually better than when she lived with us. There are more people around and I think she feels more comfortable with that.
I try not to think about my M-I-L's statement because she obviously doesn't understand how hard it was. I told my husband to explain in detail why we could no longer care for her but he said he didn't want to. His reasoning was that she would think that she'd be a burden if SHE turned out that way! OMG!
Well, he has 5 brothers and sisters who can help M-I-L when the time comes. We are moving from the town where we all live in 4 years, when I can retire. I hate to say, between my Mom and Dad, I've done my share of caregiving to last a lifetime. His other 5 siblings can choose whose home she'll live in. Then they'll understand why we had to put my Mom in a facility. No one understands until you live it!

Good luck to you and your Mom. We're here for ya'.

I didn't do this deliberately, and I don't recommend it, but it did at least get our five kids fully on board with my care of their dad.

Shortly after my husband was diagnosed with dementia I wound up in the ER and then in the hospital for 5 days. The kids (all adults) suddenly had to figure out what to do with their dad. In addition to dementia he had swelling in the brain and his symptoms were particularly bad the first few months. The kids all worked, had kids of their own, etc. and had to work out a huge schedule of who could stay with him when. They had to deal with chasing him around naked to get him to put depends on, making the food he asked for and then hearing he didn't like that food, falling down for no apparent reason, being unable to sleep at night, etc. By the end of my stay in the hospital they were out looking at nursing homes. (They were worried I wouldn't be able to resume caring for him.)

They were so relieved and grateful when I was discharged, came home, and declared I would continue to care for him at home. None of them ever criticized my care of him in the following ten years. If I had said it was time for placement in a care center they would have helped me find one. I kept them informed. I listened to their input, but also made it clear that it was my responsibility to make decisions for him.

Hubby could always showtime when my sisters visited, so they never really "got it" about how it could be so hard to care for him, but at least they never criticized me. (We just didn't behave that way in our family.)

My heart goes out to those have have to do this extremely challenging job without the support of family.

Robin, I really relate to the situation of having family members so unsympathetic. You'd think that if they're going to stick you with all the work and stress, they could at least offer a sympathetic ear, but that doesn't always happen. It didn't happen in my case, either. My siblings, except for one sister, didn't want to help and didn't want to hear about it, either. It's hard because you need the support (at least I did) and you also need other people who know your parent well to weigh in on actions and decisions affecting your parent. That's how I ended up on this forum too - I just couldn't get the support from my family when I needed it.

I hope we can be a support to you. I agree with what Windy said about taking all your mother's bills online. My one helpful sister (thankfully) did that the first time my mother bounced her mortgage payment. I've never dealt with a hoarder, but I would at least try to sneak away the least useful items a little at a time. Sorry I can't be more help - I hope other posters will weigh in too.

Windyridge, thank you so much for your suggestions. They are very helpful! My sister and one daughter live nearby. My sister is older than I. She does only what she feels like doing. I've asked her to spend one day a week with mom - taking her out to lunch and maybe shopping. She does it about once every two weeks. She's not very helpful and I notice she can't wait to bring her home and leave. I'm worried that she will also have dementia at some point and expect me to take care of her (which I don't plan to do). My daughter is very busy working and with her family. But if I talk about how hard it is with mom, she isn't very understanding. She thinks I'm criticizing mom and I'm not. It's interesting that these family members who don't live with her have the luxury of criticizing me who is doing everything for her. That's why I need to be able to talk to others who are going through this themselves.
Thank you again!

Robin, with old age and dementia you do have to use some therapeutic fibbing and trickery to keep old folks safe and healthy. My dad has dementia and I have to go to great lengths sometimes to get the simplest things done. I don't discuss the new dryer, tv, carpet cleaning with dad because "Everything is just Fine". So the new tv is an early xmas present and so on.

By all means redirect the mail and bills. My mom will fuss around with the junk mail and trinkets they send, get it all mixed up with bills and just make a big mess. So I gradually took it all over. (from 600 miles away) Shes a little miffed about this but the heat and lights stay on. Dad thinks she does the bills. That's fine.

Hoarding: Use any chance you get to get rid of stuff. Doesn't have to be dramatic. Just a little here and there. It adds up. When I visit my folks I get the science fair projects out of the fridge, throw away tons of junk mail, bags of micro plates, and when they're sleeping go through old clothes and boxes of junk. Later mom may ask if I cleaned up the house. Yeah, mom, just a little.

Where do your kids and sis live? Could they help out? My guess is they could and should but probably think that since you live with mom it's no big deal for you. You need to let them know it is a big deal and a least get a little respite so you can get out once in a while.

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