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Old 04-20-2007, 03:23 AM   #1
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Unhappy guilt feelings

My sister is back from vacation, and this is what she writes to my brother and me:

'Talking with mom last night she was very very down- lots of rain, no outdoors & very lonely. I had a lot of trouble reaching her from California, only talked four times in 12 days. do what you can Bill to cheer her up & I know M that you will be there soon.'

Bill goes to see her 4 times a week. He takes her out in the wheelchair in all kinds of weather, just to cheer her up. Lately he reports that she sleeps through all those visits. Yet my sister would have us think Mom feels lonely and neglected. The painful thing is that Bill will feel guilty when he gets this, and will feel that he isn't doing enough. Meanwhile SHE has visited Mom in NY even less than I have, although in their case the cost of flying is not even a factor...

It seems to me that in almost all families with a Dementia patient, there is a huge difference in the way caregiving is shared. I had almost all of it for 5 yrs, then my brother full time care for only 3 months (not his fault, Mom fell and broke a hip and wound up in a NH) and E had Mom not at all. Yet she constantly tells the caregiver how they should be doing the job. She drove me nuts in NY, often saying any strange behavior on Mom's part was MY fault, nothing was really wrong with Mom ....

I sent B a reassuring e-mail telling him he does far more than almost anyone else, and he should not let her projected guilt feelings get to him ...

Love,

Martha

 
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Old 04-20-2007, 04:22 AM   #2
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Re: guilt feelings

Martha, you spent five years with your mom and your brother visits her 4 times a week now! Obviously your sister has a a lot of guilt and she is trying to relieve that by harping at you and your brother. Much easier to say you two aren't doing enough as then she can think you're as neglectful as she is. I've noticed that those that do the least always have these great ideas for helping their loved one. But for some reason it never involves THEM having any actual interaction with the person. I guess they think their ideas and suggestions are a gift to the rest of the family and they need do no more.
Your mom is lucky to have you and your brother and you two are lucky to have each other.
I think most families have "one of these" in the mix.
It's easy for me to say but don't let this get you down. Remember where it's coming from and concentrate on all the good things you do for your mom and for all of us here on this board. You were one of the first to respond to my initial post and I see you spend time answering so many others. You are a gift to all of us. I bet you have no idea of how many you help and I'm sure will continue to help.
If I was you, I'd tell your sister you just donated a kidney to your mom. I bet she'd reply that you should have thrown in a lung.
Take care and keep plugging along.

 
Old 04-20-2007, 05:10 AM   #3
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Re: guilt feelings

Martha, I just have to step in here ..

No guilt .. remember?? No guilt !!!

You gave it your 'ALL' more than most could/would !! Don't you DARE let her intimidate you and B long distance .. seriously girlfriend ... WHAT DOES SHE REALLY KNOW??

Oh she makes me mad the way she makes you feel inferior ... Moo is just that, a noise.

DON'T let her get to you .... your bigger and better than that !!

I love you ..
Sally

 
Old 04-20-2007, 07:48 AM   #4
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Re: guilt feelings

Wow I can't believe my words brought you out of 'retirement.' Glad to hear from you. No, I accept fully that I did my very best, and I think Bill does also ...

Love and best wishes,

Martha

 
Old 04-20-2007, 12:21 PM   #5
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Re: guilt feelings

Yeah well sometimes 'big mouth' me can't even be quiet LOL

Only cause I love you, admire you and respect you did I venture out of 'retirement'.

Now I'm going back to bed, oh no, back to work that's right

Love & Hugs
Sally

 
Old 04-20-2007, 05:52 PM   #6
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Re: guilt feelings

Oh Martha, sometimes the very people we vow not to let get to us, we sometimes do.

All you need to do when MOOOOO gets to you is remember what Bill used to tell you about Moo when you were your mom's caregiver. Pay her no mind. She hasn't the foggiest clue about what you and Bill have gone through. And if you think Bill needs a little reassurance, just remind him of what he told you that made you feel better. I remember you saying that he was the calm, reasssuring voice in the family. Now you've become that for him. So NO GUILT, WOMAN!!!! You are doing for him what he did for you. And that helps to keep him going.

When do you leave for NY?

Love, Barb
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Old 04-21-2007, 03:36 AM   #7
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Re: guilt feelings

I'm going to be there for a week, April 28 to May 5. Both of the Saturdays are for travelling .. getting to South Bend, flying to Detroit, changing planes for JFK, AirTrain to the Long Island Railroad, train to their town, walk to their house. Unfortunately, when I booked my flights I didn't know they had opera tickets that day - but I have a key and will let myself in. I have very mixed feelings about seeing Mom, not knowing how she looks and feels since I saw her in late October .... knowing she is worse, knowing she has only a little time left ...

Bill says he did feel guilty for a bit, but then fired off an email to E, telling her off. That helped!

Love,

Martha

 
Old 04-21-2007, 12:09 PM   #8
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Re: guilt feelings

I felt the same way when I was getting ready to go see my sister in Oklahoma. At the time we thought she had lung cancer and was dying from it. It was a horrible misdiagnosis thank goodness. What she has will eventually take her but we think she has more time than she would have had with the cancer.

Anyway, I had much the same thoughts before going to see her. I wondered what she looked like now but didn't want to know. I wondered if she'd be nearly bedridden or if she'd be able to do some things. I couldn't wait to see her but I was also terrified at the same time. Should I go? Did I want to go? Did I not want to go? Ultimately, I decided that I should and I did.

I was so happy I went. My sister wasn't nearly as bad off as I imagined her to be. But still I wasn't used to seeing her weak and unable to do much of anything without having to use oxygen.

But the main thing is that we spent some time together. I needed to see her and she was glad to see me.

You'll go and see your mom. You'll be sad to see her the way she is. But you'll cherish this time with her as long as you live.

And remember to look for her moments of clarity. I suspect that she may recognize you.

Love, Barb
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Old 04-21-2007, 12:51 PM   #9
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Re: guilt feelings

Martha...I sure agree that guilt is what your sister is feeling! There are probably many reasons...both REAL and IMAGINED...for her lack of participation in the care of your mother. Phone calls from miles away to an individual who no longer is even aware of their surroundings sure is not anything like a personal visit! I realize many are only able to correspond in this way...but that little voice on the other end of the line usually not a true reflection. It's been many years since I was able to talk with my own mom on the phone...my "far-away" siblings quit calling her even before I did. A caretaker had to hold the phone up to her and coach her...and she could not figure out how that little voice was coming out. We all found it more comfortable to our mother not to call.

I'm glad you're visiting your mom. I'm sure you'll see differences in her behavior, appearance, etc., but you're well aware of how this disease progresses........it will still be challenging. My mom hasn't known who I am for more than 4 years...but she DOES know I'm there for HER! Your mom will know you're there...and that you love her.

I did give my Az. sister a call though, a couple years ago from the NH. It was a particularly good day with my "mom visit"...I had been singing with her in our regular "do-do-do" fashion and she seemed like she was having a good time. Realizing my cell phone was in my pocket, I decided to give my sister a call so she could hear our mother. I explained who that was on the other end as I held it to mom's ear....she listened intently as my sister talked...then, without any pause started singing Red River Valley in clear beautiful words...."come and sit by my side little darlin'"..............they finished the song together. Miracles do happen once in a while if we pay attention.........Pam

 
Old 04-22-2007, 11:25 AM   #10
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Re: guilt feelings

Martha, I just read your last post again.

Quote:
Bill says he did feel guilty for a bit, but then fired off an email to E, telling her off. That helped!
LOL!!! I remember Bill telling you to shrug off what E said to you when you were mom's caregiver. So easygoing he was. I'm glad he feels free enough to say what's on his mind now! LOL!!! I still can't imagine him telling her off.

Good for Bill!!!!

Love, Barb
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