Glitter53April 25, 2005

Sweetie: you said it in your post in my Alzeimer's thread: it's THEIR LOSS! I just posted the same thought in Pearl's thread and mentioned you, also.

Mimi....I felt the same way when Mom was living with us, nevermind the Alz! Her small group of friends, except for one, dropped off the face of the earth! And the one who called is one of those busy-bodies who probably just wanted information to pass along to others! I think perhaps we're projecting our feelings onto our Moms, and feeling that they're abandoned, when really...they're content with having us care for them. I know my Mom wouldn't have wanted anyone to see her in her condition when her Alzeimer's took hold...she's always been a proud lady. Family members who don't take the time to visit will one day know they weren't there for her. They'll realize their children didn't spend enough time with Grandma. And, in the end, there isn't a darn thing they'll be able to do about it. But you'll be able to hold your head up high, knowing you saw your Mom through this insidious disease every step of the way...that you offered her all the Love she needed...that you were the one who truly CARED. As for the others, there isn't a darn thing we can do to MAKE them care...it truly is THEIR LOSS.

Now, when I visit Mom in the NH, our time is so much more precious. It's hard to explain, but I'm no longer the one making her take her pills, drink her Ensure, help her in the bathroom...I'm now free to breeze in to visit her, bring her treats (she asked for chocolates next time I visit!;-)...do her nails...smile and genuinely have special times with her. She still remembers who we are, and it was so sweet yesterday: My DH was holding and petting her hand as we sat by the picture-window in their dining-room, and I was applying polish on her other hand. I just KNOW she felt so loved at that moment... I'm sure she wallowed in the attention!.....We can afford to do these things now that we are able to focus our attention on HER rather than the duties that need to be done! It was a special moment.

You mentioned that your Mom had difficulty negotiating a knife: perhaps it's time to cut things up for her so that she can use a fork or spoon to pick them up. I know that I ended up almost making two dinners here, or making things like meat-loaf, shepherd's pies, other casseroles, etc more often than we normally would have so that she was able to eat with less effort. Even chewing their food seems to eventually take so much effort on their part. And, as our doctor said, this is no time for Canada's Food Guide: load them up on calories to maintain their weight, which is important, because they lose the ability to process foods later on, and you'll find your Mom losing weight even though she may be eating very well. Don't panic like I did...just know that she needs more calories: Mom loved her milk-shakes! (with Ensure in them...shhhh ;-)

I hope we can be helpful to you, Mimi, as you continue the journey with your Mom. The gals on this board have seen me through many emotions, much turmoil, and venting...they're all so precious to me; I hope to be able to be as helpful to you and others now.



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Linda i hope you don't mind me jumping in and giving my 2 cents worth. firstly, i want you all who have parents, relatives or friends who suffer from Alz. such a terrible disease. but i don't think it matters what kind of sickness there is people who you thought were friends (nd relatives) just see to drop off the face of the earth. when al lost his first leg below the knee, there were people coming to the hospital all the time, flowers, cards, people calling all the time. but i guess when his diabetes progressed, i feel like we were old news. it's funny al and i were just discussing this last nite. al's mother and sister ONLY show up when he is in the hospital, and the only other time might be his sister at christmas dropping off gifts for the kids, and then it's can't stay gotta go, gotta go. al's best friend drops by every other month, but his wife and i had a misunderstanding, she brought something over to the house and i said thank you you shouldn't have. well she blew up and said you know debbie i'm sick and tired of trying with you and stormed out the door. to this day i have no idea what brought this on, and because she is a "broad" i don't really care. but she used to phone me 3 times a day with her worldy advice. our neighbours are good, one plows the driveway, the new people new door and i chat across the fence. the other couple with the kids come over once a day and ask me to go for walks with them. my mil--that is my sore point is she isn't ever around even when the kids were little, and it's so said that she doesn't take an interest in them at all--and believe me they are good kids and spend alot of time with us as a family unit. linda, sandra can attest that where i go my daughter is there right beside me. but as you say, it's their loss! and al is not getting any better, infact he's getting worse, but like you say i can hold my head high and know we've given it our all and with alot of love. ps thanks for the cold weather --we're supposed to get snow sometime today! hugs! debbie

    Bookmark   April 25, 2005 at 10:51AM
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You are so right...it doesn't matter if we're dealing with Alz or something else...the caregiving issues remain the same and the lack of support hits us just as hard, no matter what the reason for the caregiving.
Linda, I appreciate what you wrote, as well as everyone else's thoughts and words of encouragement. It means so much to me to know there is a place I can go where people really understand and care. Thank you for putting things into perspective for me about mom's friends. Again, I am relatively new to caregiving and all the emotions that go with it. I am totally committed to being at my mom's side as she goes through her journey and letting her know that she is deeply loved by me. I especially want to thank you Linda for sharing your experiences now with your mom in the NH. I have had many nights when I couldn't sleep because I was thinking about "down the road" when I'd have to make that decision for mom, but now, you have brought me such inner peace to hear how well your mom is doing and how happy she is and how at peace you are. To me, this information is priceless and so comforting. Thank you, and everyone who has posted...I cannot tell you how appreciative I am....be well, Mimi

    Bookmark   April 25, 2005 at 11:11AM
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Mimi...I'm so touched by your comments; I'm happy to have passed along some of the assistance that I've received here in the past. This is a wonderful, rainbow of a place to visit, where everyone is your bestest friend! ;-) It's such a comfort to know others can truly understand our struggles and rejoice in our joys.
Be kind to yourself; you're a good Daughter and your Mom is very fortunate to have you. ;-D

Debbie, I'm so sorry to hear that Al is getting worse: what's wrong, Sweetie? I wish I was there to be with you now and then....Your plate is certainly full. As for your children (okay..they're not children anymore!;-), from what you tell me of them, their work, their career plans, they both sound like wonderful gifts to you and Al. If Ernie and I continue our trippy to your town in August, I'll be sure to tell you so that we can meet!
As for the snow, you can hardly blame me for wanting to share that crap, can you? I mean...who the heck would want to keep it all to themselves?! Honestly! We really got hit this weekend, and our DD had to fly to Toronto for a week of meetings in that storm: she was SO nervous...not a happy flyer on a good day! It's almost gone now, thank heavens!

Take good care, you two! And I mean it!

    Bookmark   April 25, 2005 at 11:51AM
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Hello Friends, Mimi....welcome....we are here to comfort,support and most certainly to listen. No matter if your journey has been a day or 9 years(cant' believe ours has been 9 years)....we are only human and have feelings and emotions...are journey is defferent in many ways and the same in many ways....dealing with those that "just don't get it"....for me can bring out the bad....guess my thoughts have been is...I have them but just don't let them stay....it is just a process or journey you have to walk....my saving Grace is thur prayer and God's grace I can work thur...also to come here and vent and know others care and understand keeps you going. Mimi I am so glad you are here!!!!
Deb, Always keep you and your dear ones in my prayers....lady you inspire me and if anyone had a reason to be angry...you do. Al's family are sad,sad,people....they are missing out on so many blessings....their loss!!!! They will have to answer....down the road. You Are The Best!!!!! Take care and don't forget those bubble bathes.....
Linda, Blessings sent to you. So happy that all is going well with you and your Dear Mom. Thanks and bless you for all your wisdom.
Thinking of you all, Nora

    Bookmark   April 25, 2005 at 1:11PM
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Me again butting in! when i was reading the posts, i thought it's so neat that even though we don't know each other or what we look like (except for Linda.. and believe me she is as beautiful as she writes!...no i don't want anything) we are probably all best friends through sad and happy times, which i think is just wonderful! i do wonder if we could talk to our friends (in real life) like we do here? i think if i said any concerns to my friends or relatives, they would probably roll their eyes or after they have left, they'd probably think i was blowing things out of proportion.
Linda, if you didn't come over, i'd be pretty ticked off. i was thinking i should start cleaning up the house right now so things would be "pretty" for when you come into town! i really don't know what's up with al, yesterday because it was warm out we took him for a drive and then i asked him if he wanted to go to the cemetary to visit his dad. i spent the good part of an hour cleaning up around his site, and al said it's something that i don't have to do, but this man was the most kind person and always made you feel special. the kids came along too (i guess not kids 22 next month and almost 17), but it was just like the old days. i thought this would cheer him up, but he hurt his leg and back getting back into bed, but slept for about 3 hours last night. i feel that he is just plain tired for being sick, and that he is a burdon on us. somedays he is believe me! but most of the time we still have fun and joke. i do think it's how you actually "taketo" an illness, we figured we would use humour and 95% of the time it works.

by the way it's "Nation Inclusion" week here, so give your love one an extra hug! debbie

    Bookmark   April 25, 2005 at 2:42PM
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Debbie, you are a brat! LOL! I'll pay you when we roll into town...hahaha! As for tidying up...Honey...Mom's been in the NH home for two weeks, and I'm still finding things she squirreled away! I always maintain that "Our home is clean enough to be healthy, but messy enough to call 'home'". Messy is just God's way of reminding us of all we have! ;-D

Nora, I've read many of your posts, and have received much wisdom and strength from them. Bless you for being part of our 'gang' here. We all are a rare breed, aren't we?

Thank goodness I'm blessed with friends I can talk to at home, also, mostly because they've been thru something like this. And my bestest friend can be here in a second's notice if we're on the phone and she detects one of my yucky moods....I'm blessed to have them and I'm blessed to have you all. I don't figure many of them can appreciate a 3am phone call when I'm in tears, but I can always come on here and write to you gals! Even typing things out helps many times. ;-D

Bless you all

    Bookmark   April 25, 2005 at 8:15PM
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Hi Deborah,
I've been thinking about what you said about what would our friends think if we talked to them like we talk to each other. I tried talking to my "friends"...not true to heart ones, but ladies I've worked with for many years and I thought we were close. I talked to them before moving mom in, then after I moved her in I had a period of adjustment with a lot of frustration, depression and anger and I found they really didn't want to hear it. If I started to talk about the problems, somehow the conversation would change, so I stopped. Now if they ask how things are I tell them everything is wonderful...they really don't care and that's okay. If I try to talk to my sister, who tells me that I should call her any time I need to talk, she either tries to "fix" it, or gets so depressed that I end up feeling bad that I mentioned anything to her. That is why I find you all so special. You understand; you've been there, done that and not only can you give advice, but you're compassionate and you know exactly what I'm feeling and going through. I guess you have to walk the walk before you can truly understand.
Debbie, I'd also like to mention to you how much I admire you, even though I really don't know you, but I've read many of your posts and I realize your life is not easy, yet you continue on, sounding cheerful and trying to be helpful. I just wanted you to know that I think you are terrific and I hope that Al knows that too...Actually, I could go on and on about the whole bunch of you, but then I'd be getting all mushy and teary eyed and we don't need that... : ) I'm so glad I found all of you...you are all angels, you really are....sweet dreams to all and be well, Mimi

    Bookmark   April 25, 2005 at 10:54PM
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Mimi how nice of you, but i don't think i'm special at all. to be honest with you, before i met Al, i would say i was self-centered and selfish. it was through Al that i found that girl you better change and fast! Al has always donated his time before to coach baseball, football, hockey, church, high school reunions, you name it he did it. He also has a degree in Graphic arts nd you should see some of the posters and drawings that he has made and donated. so he changed me, i also donated my time, working bingos, sparks(like little girl scouts), coaching soccer and i still donate my time sewing hockey jerseys, and donating quilts to worthwhile charities, or donating them to people in the hospital. our daughter and i donate our time helping young children to read and she also helps out in a recreation programme in the summer. matthew (the son who lives in the basement - lol), coaches hockey and baseball and other sports clinics and works charity bingos as well. this summer we are planning on helping habitat for humanity. it's also alot of fun if you want it to be and you can meet alot of new people, sometimes you say, boy these people are worse off than us (these are Al's words). just take baby steps, make it through the morning, then the afternoon and then evening, i think we all still do this even if we have been caring for someone for along time. our house is a mess, i don't think you can catch anything though (lol), i figure if i want to quilt or knit, ut gosh, that's what i'm going to do! and i also end my day as everyone here knows, with a bubble bath and a good mystery book! i have learnt so much from everyone here and i think some really good friends. I try and keep everything as "normal" (but what is normal - lol) and try and be positive or kindof positive, use humour and talk to all of our friends here! ohdear, i kindof rambled on a the dog wants out, keep your fingers crossed that we don't get snow tonite and try and have a good sleep (that's for everyone), your mom is in really good hands! debbie

    Bookmark   April 25, 2005 at 11:25PM
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