Feeling guilty(5)

DawnOfANewDay

My mom has had dementia for quite some time and I have always handled her doctor's appointments, medications, grass cutting, etc.   Even before the dementia, my mom had mental health issues and was pretty high maintentance.  There were SO many times when she refuse to take anti-depressants and would call multiple times a day for weeks on end telling me how she just wanted to die.  She cried all the time.  Just really rough times.  I did this alone.  My sister was never really involved at all.

About a year ago when it became apparent that my mom was declining, my sister stepped up and moved in with her.  She now takes care of her daily needs (food, house cleaning, laundry, etc) and I do all the doctor appointments, hair appointments, medications and finances.

My mom and I were always close and used to talk daily.  

Now, I only see my mom about once a week and I feel so guilty about it.  I feel so resentful about all the years when I felt like I was doing it alone while at the same time grateful that my sister stepped up.  I just feel like I am checking out.

I just dread every time, I go there.  I used to be able to take her out, have lunch and walk around a store, but now she can barely walk and refuses to use a walker.  She is a smoker and I hate sitting in her house.  After a couple of hours, I start wheezing.  She refuses to come to my house except occasionally.

I am just so tired of it all.  Tired of her forgetting how a bank/checking/direct deposit works and explaining it every day for weeks on end.  She calls me at least twice a week and cries that she doesn't have any money.  She does have money.  She won't take my sister's word about money issues.  Years and years of the same things. 

I feel so bad for my sister, yet I don't do more then I have too.  I just feel so guilty.

sjohnson

You are going through a lot!  It sounds like for years, you were the sole caregiver of your mom.  That alone is alot to deal with.  But in the midst of that, you just put your head down and deal with it.  Now you have some help and also time for yourself that you didn't have before.  That can bring up a lot of feelings.  Dealing with all the emotions around a loved with dementia is like going through the grieving process while they are still alive.  Feeling guilty can be part of that process.  Remember that it is very important to take care of yourself, too!  you did so much for so long.  You are a really good daughter!  Unfortunately, your mom's dementia is not going to get any better.  That is the nature of this disease.   Taking some time to care for yourself is going to help your mom in the future.  And know that you are not alone.

DawnOfANewDay

Thank you.  See the words, "And know that you are not alone."  brought tears to my eyes.  I hate this disease.  

I do feel alone at times.

As I am sure all of us have, I have lost friends.  

Amymv

I am so sorry for all you are going through.  You ARE a good daughter right now. and you were a good daughter then.  It sounds like you are having guilt over not being as involved as you should right now.  However, you did the lion's share until recently and you ARE helping! Is it possible that you are still adjusting to not doing it all and it feels foreign to you?  I say this only because it's a problem for me and maybe others as well? My mom passed away in June of 2020 and I still feel lost.  

I understand what you mean about losing friendships.  I hope you can reconnect with old friends and make new friends.  True friends will understand and now you can help carry a friend who is losing their parent to this horrible disease since you are in the trenches.  I wish none of us had to deal with it, but we all need support and encouragement!

It is important to take care of yourself.  It is good that your sister stepped up to help.  In my humble opinion, this is good for her and for you as well as your relationship going forward. 

Please come here when you need to and know that you ARE, ALWAYS have, and WIL L CONTINUE to be a good daughter.  Let go of the guilt.  This thing isn't easy and we are all doing the best we can. 

Sending hugs,

Amy

DawnOfANewDay

I feel guilty for dreading when I have to go see her.  She is no longer interested in most things:television, puzzles, reading,puzzles.  I think she has lost the ability to follow a show or do any of the other things.  She struggles to communicate, either searching for words or forgetting what she was saying, so I have to make all the conversation. 

 If you try to mow her grass, she non-stop will tell you to take a break.  It takes twice as long to cut the postage stamp lot because she come out every 2-3 mins and waves you over.  It you don't go over she starts down the steps.  I know that her dementia makes her forgetful, but she was always like this and now it is magnified.

She has always obsessed over things, but is much worse with the dementia. She is taking meds for depression/anxiety.

She has a really hard time walking, yet refuses a walker and will hold onto your arm for support which kills my already injured back.  

It's everthing.  It makes me feel like such a whiner to type my frustration when I know others have it so much worse.

I think it is just 25 years of dealing with a some-what difficult mother and the last 5-7 years of a difficult mother with dementia. 

Jude4037

You are NOT a whiner you are telling your story to friends who wish they could help . Because some one is dealing with something worse does not help your situation. But I often feel that way also. I had a good caring husband and now I don’t. And it sucks.

DawnOfANewDay

Thank you!  

At least, I get to leave.  I can't imagine if it was my spouse.

My sister insists that she is fine, but IDK.  I have told her repeatedly that we can look at memory care for our mom.  The worst part is that my mom would be devestated to go into memory care and I think she woudl die in a short time.  

My mom is one of those people who would resent a carer coming in.  She insists that she is fine alone (she is not left alone except for very short periods of time), plus she smokes.

Cynbar

Dawn, I can see the love you have for your mother in your posts, she is lucky to have you! One of the hardest parts of this journey is for you and your sister to realize that you are the parents now, and will sometimes have to make decisions that your mom won't like or understand. There is no reason to feel guilty, you are already doing a lot to help your mother. But you are right to be concerned about your sister, full-time caregiving can be exhausting. It would be a good idea to start the process of getting a caregiver in to give your sister a break. Your mother won't like it at first, but try to think of ways to make it work out (posters here can give you lots of suggestions, this is an old story.) She is not thinking clearly, she can no longer make sound decisions.  And keep an eye on your sister for signs of burnout. If memory care does appear on the horizon, don't feel that it will be a death sentence. Most people do eventually adjust and do well there. And, you will also get a lot of advice here on how to facilitate the transfer and make it work. Good luck, You are clearly a loving daughter, there are many ways to contribute without being a hands-on caregiver.

ChicagoGal

Please do not feel guilty and take care of yourself.  I am in a similar situation.  I feel that dementia turns them into "children" and we have to keep them safe and do what we feel is best for them, and us.  My mom cannot run my life because she is not capable of running hers anymore.  As my friend says "elderly parents are children with power"

DawnOfANewDay

I am trying to get my mom to come to my house for dinner.  I have a hard time sitting her house even thought she doesn't smoke when I am there.   After a few hours, I start to wheeze and it is very hard to sit in the kitchen.  I have some back issues.  She never wants to sit in the loving room, only the kitchen.

I am trying to turn our office into a bedroom. My bedrooms are upstairs and she doesn't do steps. To give my sister a break,  she will just have to stay overnight at my house.  There is no other option.  She won't like it.

IDK.  I just don't know what else to do.

Cynbar

Dawn, I think this plan would help to reduce stress on your sister, and also show her your commitment to doing your share. It's so important to arrange help before the caregiver goes into total burnout and runs out the door. If you create a new topic asking for tips on how to talk your mom into it, I bet you'll get a lot of helpful posts. Congratulations on being proactive!