Just My Thoughts

mimi427October 31, 2005

I spent yesterday with mom. It had been two weeks since I last saw her, although I do call her almost every day. When I call, I ask her how she is and it's always the same "oh, I don't know" and I ask what's wrong and she says "it's my head, I'm just so confused". I realize that this move from my home to my sister's was very traumatic, I had hoped that by now, three weeks, she would have been able to settle in.

We took a beautiful drive; I wanted her to see the awesome Fall colors we are having this year - it is still in the 60's here in Chicago and almost November...so hard to believe. She seemed to enjoy the ride. We then went to get a manicure and I was able to sit right next to her while we both had our nails done and she seemed content. We went back to my house to spend the rest of the day together and then have dinner with me and my husband. The entire time she was with us, all she talked about was how confused she is, and that there is nothing in her head. She didn't recognize my husband (she lived with us 11 months) and did not remember living at my house. From about 4p on, she kept repeating "I want to go home, I feel as if I need to go home now, but I don't know where home is".

I can't tell you how heartbreaking it was. I realize that the move was traumatic and that it caused another decline, but realizing it and seeing it is just not the same. I tried to be sweet, and calm and gentle with her. She was not agitated nor combative, just matter of fact when she talked of her confusion and memory loss.

I'm writing for two reasons. One is to just vent, the second reason is looking for guidance...how do you handle these visits and phone calls? Even though my days are filled with work from my job, when I call her, I don't know what to talk about. I can't ask her questions because she just doesn't remember a thing. Besides my work, I talk to no one. During our visits, I wish I could think of something to talk to her about; I am at a complete loss...and very very sad,


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Mimi, do you think she remembers your calls? Don't bother her to ask how she is. She can't think of anything to say and trying to think reminds her of how befuddled she is. One thing you can do is to read something that is interesting from the newspaper or magazine. It could be about flowers, new movies, travel, just anything to pass the time and let her hear a familiar voice. "Home" is a word that means Safety and Security to her. It doesn't always mean where she lives.

    Bookmark   October 31, 2005 at 2:26PM
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My situation is a bit different, my folks are on their own still, BUT, I am chauffeur every other day. We get out and do a few errands. But they don't have much to say, I tell them lively stories of almost hitting a deer, watching friends arrive at the airport with their new Chinese toddler, things that are going on in my household. I try to keep their spirits up but sometimes they just have nada to contribute...Mom is better than Dad. It IS very discouraging. I have the best results if I ask them about a trip they took or when my brother did somersaults on the beach, but it ended up as a headstand. These things they can recall or relate to, but current things...there just isn't much. Unless a neighbor stops in, but that's rare. Sometimes we just sit over lunch and enjoy a comfortable silence. Luckily they love to go for a ride along the ole river and look for squirrels or eagles or ducks. I need to take them to the park and sit in lawnchairs before it gets freezing out. They are rather mesmerized by TV, but I try to stay away from that while I'm there because I don't really want to watch it. I feel for you, Mimi, it is so difficult sometimes. Try to tell her a story about yourself and siblings when you were young...loving stories of things she gave you or did with you...

    Bookmark   October 31, 2005 at 2:33PM
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Phone calls may not be the best way to stay in touch, at this point she may not be able to figure out what is going on over the phonek, and she certainly has nothing to say. Things are no longer normal for her. She needs to see you in person, once a week is fine.

Avoid visits, and phone calls in the late afternoon and evening, she's probably "sundowning" and will be even more confused and anxious as it gets darker. Keep the visits short, and don't try to "reorient" her, her reality is her reality, and trying to change it will only upset her.

Take old photo albums or scrap books, or library books with pictures from a time when she was younger. Those are times she can probably remember. The present makes no sense at all to her. My mother could not watch TV or read the paper as she prgressed in her dementia, and she had very little interest in what was happening now. I could talk about my kids, and sometimes she would know what I was talking about.

Just sitting quietly is sometimes the best. Let her free associate, if necessary. It may not make sense to you, but it does to her.

Good luck.

    Bookmark   October 31, 2005 at 2:53PM
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No, I don't think she remembers my calls, not even minutes later. The reason I call is I think it makes her happy "in the moment".
I took your advice, and called her earlier today, around 2p. She didn't seem any less confused, in fact, asked where I was and if I was coming home.
Reading something to her and going over photo albums are really good ideas that I will try the next time we are together...thank you.

    Bookmark   October 31, 2005 at 3:55PM
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Take her some magazines with pretty pictures. The gardening magazines usually have lovely scenes. She may be able to spend some time with you talking about the trees, flowers, and such things. Some people in her condition also love soft stuffed animals and baby-like dolls. Both would give her something to do with her hands.

    Bookmark   October 31, 2005 at 6:10PM
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I did, in fact, give her a life-like doll a couple of months ago, that I purchased from the Alz Foundation. She was thrilled when I gave it to her, but doesn't hold it. I'm hoping that one day she'll want to hold it. She's taken up playing with her lower bridge - takes it out of her mouth constantly. At first, I thought she might be having dental problems, but a trip to the dentist proved otherwise. She probably needs something to keep her hands busy, but I don't know what. She knitted and crocheted for many, many years, maybe just giving her some yarn to make into a ball?

    Bookmark   October 31, 2005 at 7:53PM
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Hi, Mimi! You've received some wonderful advice here so all I can do is reiterate what they suggested. My Mom always enjoyed the National Inquirer as well as our local paper..she loved politics and even smacked your president's picture in a Time magazine I brought her while she said, "I don't like him."! haha! The lady still has good taste in my humble opinion! ;-)

We bought her a child's book last Christmas that illustrated birds in it, and if you pushed a button on the side, you'd hear that bird's call. The buttons don't work anymore, but she still enjoyed her birds. She loved watching figure-skating, so she also had an album of skaters during their performances...she loved the costumes.
We also coloured in colouring books...so sad to see her trying to stay within the lines, but it was all good and we enjoyed those times. She wouldn't understand anything I read to her, and even talking can frustrate her, but picture books are so nice...and yes...gardening books, photos of flowers, gardens...lovely for them. I just sit with Mom without saying much and we flip the pages and she strokes the photos...if she talks it may or may not have much to do with the photos, I just smile, and nod and agree with her. Funny you mentioned nails....she loves when I do hers....it's another bonding time. She loves her stuffed animals. Although she doesn't know what exactly is on her tv, I've been "shushed" more than once during a soap opera! LOL! I've taken flowers from our garden, and hope to find some really nice fall leaves to bring to her, but we're a little past you, and so many of them have become less than lovely.

And as far as what "home" is....when my Mom says she wants to go home, she means her own room and bed....that's comfort for her now, altho' I panicked when I first heard her say that! I tried to change the subject, thinking she meant our house, and wheeled her to her room and when we got there, she said, "Oh. It's good to be home!" Whew!! Dodged another one!

So just an fyi....conversations just don't make sense to her and asking questions just befuddles them and makes them anxious. When she says she's confused, just go with it...say, Yes, Mom...I know...It must be difficult...Then change the subject back to the book or whatever.

Mimi....please don't distress yourself about those changes....her move could have had NOTHING to do with her drop...they just do that from time to time. They just lose more and more...One nurse told me that (at the stage my Mom is at) it's more difficult for US to see them that way, than it is for them to BE that way. For now...my Mom is in her own comfort zone, and your Mom will be there one day, too. It's more difficult now, because she realizes things are changing, but as there's nothing we can do about it, just keep calm with her and speak of other things.

Hope this helps....

    Bookmark   October 31, 2005 at 9:27PM
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Mimi, I know that this time is hard for you. My sweet Mom went thur the changes with her journey with alz. and loved ones have to do the same. Feeling and emotions run high as you watch them. Others have given such good advice. One of the best things that I bought Mom was a table from QVC..the legs went under her chair and fit close up....it makes it easier for them to look at books and we used it to feed her as time went on. She loved to sit and look at the large children playing cards with bright pictures and we would put several different things on the table to keep her busy. Mom all her life had worked and handled money...my Dad would give her dollar bills and she would play with them. Just a few suggestions....thoughts and prayers are being sent your way. It has been 4 months since Mom went to her heavenly home....just one day at a time is all you can do. Nora

    Bookmark   November 1, 2005 at 7:52AM
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Dear Nora, Linda, Log Frog and everyone else,
Thank you for your good thoughts and suggestions.
Nora, you mentioned the changes that we all are going through. I guess I've not been addressing that; not only mom's decline, but how it affects us all. It seems that every time mom declines, it takes me a while to adjust to the changes.
The other problem I'm having is accepting how this affects my sisters as well. I sent an email to both on Monday, just letting them know how Sunday's visit went with mom and me. I mentioned mom's confusion and that she didn't recognize my husband or remember having lived with me. My sister, the one who is now caring for mom, wrote back stating that she has seen NO decline in mom; but this is the same sister I have always felt has been in denial. I realize I can't make someone see things as I do, but I find it hard to just accept what they do see, because to me, it's as clear as the nose on my face.
She also "mentioned" to me that in the entire time mom's been there (3 weeks) she has not had to help mom get out of her chair -- this was one of the major issues for me, since I've had such bad back pain and it was becoming almost impossible for me to help mom up. My sister said "isn't it ironic that the one thing that was the hardest for you she's not needing help with anymore"...you know, I was floored. How can that be? Yes there were many times I didn't bother waiting for mom to ask for help; if I knew she wanted to get up, I'd walk over and help her, but there were also MANY times that I would wait and let her try, and wait until she said "I need help"...why the change? I understand that sometimes they can manage to get themselves together, but for three weeks? We had bought mom the recliner that lifts them up to almost a standing position. She never let me use it to full advantage, because she'd become so frightened and holler "I'm falling, STOP", so I did. Now, my sister tells me they use it to lift her all the way and she just stands up.... So much to try to understand...

    Bookmark   November 1, 2005 at 8:15AM
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Mimi, there's is one thing to remember, and that is when she is going through different phases, different things happen. While she was with you and tried to stand by herself, she may have been aware enough to "feel" shakey on her legs. Now, she may have gone pass that point where she is not aware of that and so she just stands up without worrying about falling. Don't worry about what your sister thinks. She's not seeing the entire picture.

    Bookmark   November 1, 2005 at 8:30AM
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Your mom will respond differently to different people and different environments. For some reason, my dad often thinks my brother wants to lock him away in a nursing home (he can think of no reason). And I'm the reasonable one. We've no idea why. It could be that your mom got accustomed to you helping her get up when she was actually having trouble and thought your always had to help her. Different caregiver, different living room, different response. Doubtless your sister is having trouble with your mom in ways you never did. Trying to apply logic to the Alzheimer's mind is an exercise in futility. Things are what they are. Change is stressful for the elderly, especially those with dementia. It may take you mom a while to adjust.

I have stopped trying to talk with my father on the phone. He gets so confused by it that it seemed to be doing more harm than good. I agree with the posters above that talking about things she's likely to remember, such as things from the past, may be your best bet. You could also try singing a song she's likely to recognize. That might give her a happy moment. I hope my daughters are as thoughtful to me when I'm in my dotage as you are to your mother.

    Bookmark   November 1, 2005 at 9:16AM
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I am having a hard time composing this posting, because it means putting into words the things I struggle with. I believe each of us has our own heart and eyes with which we view our loved ones. My siblings see and interpret things differently than I do with Mom. They brush aside my concerns about her loss of self, the decline is noticable to me at every stage; they just shorten their infrequent visits with her because she can't converse well, or remember where she is or what time of day it is. I try different things to engage her, based on how she seems to be at the moment. Some things work one day, but not the next. But I keep trying. I NEED to, for me as well as for her. Sometimes I just lay down next to her and hold her hand, sing songs or recite poems. I brush her hair and do her nails. I put outfits together so she has things ready for the aid to help her dress, right down to socks and accessories, and I do several outfits a day, in case it's a day of many changes. I am caring for her as best I can, on the same level of caring I always felt I received from her through all the years. I can only accept giving back to my Mom in a way that lives up to what my parents gave me. My brothers and my sister do not feel that need, and I have had to accept that I can't IMPOSE that on them, they either feel it, or they don't. I am not saying my way is right, only that it is right for me. Mom interacts differently with each of us, or each of us interprets what she wants or needs based on what is right for US, then we act accordingly. I may cry for the loss of Mom as she was, but I end each day knowing that I tried my best (sometimes my best isn't very good, or patient, but it's the best I can muster at the moment!) I have learned to view phone calls not as conversations, with the two of us interacting, but as a means of saying I love you, I am thinking of you, and I will call tomorrow to say the same thing.

    Bookmark   November 1, 2005 at 12:31PM
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Mimi - I truly feel for what you're going through now. One must experience it to understand how excruciating it is. My mother was in a nursing home for the last fifteen months of her life. She had had a catastrophic stroke. It took out nearly all her ability to function and the home was the only, and fairly dreadful, solution. During the initial weeks we could have conversations, but then her ability to articulate anything slid down pretty fast. We would look at pictures, scrapbooks and magazines together, and she would just smile. She had been a teacher and a passionate reader and it was just heck to watch her mind go. Then I discovered singing. If your mother enjoys music, you might try this. When my mother could no longer speak coherently and barely recalled my name, she still remembered all the songs she had loved. So we sang them together during my visits - all the silly golden oldies like Mairzy Doats, all the Big Ten fight songs, all the state songs she knew (especially for Illinois, as she was a Chicagoan), and most of all, hymns, which she knew by the hundreds. We would sit and sing and go for wheelchair walks and sing. My fondest memory of that time is three weeks before she passed away. The nursing home had a big Fourth of July outdoor party with a karaoke singer, and she hummed along, laughing and clapping her hands. So if your mom likes music or ever liked to sing, you might try this.

Do remember to take care of yourself and let go of this situation occasionally. I was consumed by my mother's illness and that did me no good at all. I look with awe at people who home care.

    Bookmark   November 2, 2005 at 5:38AM
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Dear Mimi, Susan said it all so well. The one thing that I had to come to realize as I cared for Mom was that it was our journey together that was the main focus....there would be times that my dear sister "just didn't get it"...and she would say things that would just make me want to scream....my dear husband would tell me over and over...."you just can't make others see or feel the same way you do"....after a long time....it finally came....peace...with knowing that I would take it one day at a time with God's strength and Grace and pray....pray that what was important was "MOM" and my sweet Dad and all I could or would do was to care and love them the best I could...each day I had them. Others would just have to do the same at what point they could. It is hard when it is your sister but....put on the armour of God and ask him to help you not let "words from others effect your love and care for your Mom. As I said ...it is not easy but....with time and prayer...words and actions just don't have the sting that they did. My thoughts and prayers, Nora

    Bookmark   November 2, 2005 at 10:56AM
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To All:
Once again, you have helped me so much by sharing your experiences and knowledge. I am grateful to all of you.
Blessings to all,

    Bookmark   November 2, 2005 at 11:24AM
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Mimi, i don't have any idea of what you are going through, but i DO KNOW it's something very,very hard! I do want you to know that i do think about you though. like you have told me, try and take some time for you! debbie

    Bookmark   November 3, 2005 at 10:04AM
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