What's Happening in our Caregiving World?

[Buttons2]

and ((((hugs)))) Karen. I should ask Mike if we can have a hug option to click!....stay cool! Pati

[Jo6]

Hello dear friends. I don't get to come to BT as often, but If I can read in Alzheimer's forum and Emotional Support I am doing good. I need to hear form all of you. It hasn't been so very long since I was trudging along on this lonely road. I feel so bad for all of you and for your LO's too.

I know everybody does different, but when you come down to it things are more alike than differant. We as caregivers all have the same desire, to make our LO well again. I read your post and it breaks my heart for you all.

Jeannie, I'm glad you had a good time with your relatives.. It's important to keep close to those that love you and care about how you are doing. Of course we all love you here too:)

Pati, the long distance caring is probably the hardest, but then again all of you are in hard spots. Please know You have our prayers and love too. I also have heard what you said, if one is a hard person to live with they will change totally and be that sweet angel on this earth when they become ill.

I really don't believe this myself. That is just my opinion and my experience. Mary would be so sweet one min. then turn right around and slap the crap out of you. Don't give up hope though, it can change in a blink of an eye.

Karen, I'm glad your MIL seems to be smiling more, but by the sound of that NH she was in I don't think I would trust them for anything.

You have a very heavy load on you and I worry for your own health. Honey, I have Scoliosis too, but it hit me like a ton of bricks. I guess it was the reason it seemed everything hit me all at one, but it didn't and if you were born with it I'm sure you are not able to do any lifting and you've GOT to get more rest. I certainly do admire you for wanting to care for her at home, but maybe you need to look elsewhere for another NH. You have Mr.Q to look after too. Please know I care about your own heath. Karen, I know you are much younger than me, but you have had a life time of pain. I don't care what anybody says, SCOLIOSIS does cause much pain and it can cause other problems to get worse.

To all of you caregivers my heart goes out to you. My prayers are with you all. I think of Mrs. J also. She needs someone looking out and helping her. I care about her too. She is not able to do all the caring she does. Mrs. J, I love you too and my prayers are will all of you.

Jan, dear Jan, I hope things are going better for you. You also carry a big load.

I was thinking about Tootsie today. If she were with us today she would tell all of us what she thinks we should do. she was such a love and helped out any place she saw a need. I miss her and I know all of you do too.

Well, I've rambeled on and on and haven't said a thing. I just know I love you all and hope all of you are having a good day.

May God Bless us all, Julia ((((((hugs to all ))))))

[tic chick]

hey everyone ,

julia, so nice to see you posting here and in emotional support. i hope you continue on your rode to recovery .

i saw my mom on wednesday. i'm only seeing her every other week. she doesn't know me and she makes little sense when she talks. it's very frustrating! i ask the aides how she's been doing and they say, "oh, yesterday she was talking and riding around in her wheelchair." i don't know if i should believe that becaue everytime I go there, she is in bed. it's also funny that when i come, an aide always comes in and starts to try to get her out of bed. i don't really think they try all that hard in the mornings...of course my mom won't get out of bed unless you help her and get her clothes. i found almost all of her clothes inside a plastic container, a large one. i always see her in the same clothes and she has different clothes...they're all in the darn basket. i took out the tops and put them in her drawer and hung up all her pants. i'm going to make a surprise visit in the evening and see if she is dressed and out of bed around dinner.

i went and visited my mom's old roommate and her husband. he's such a nice man and i asked him if he'd seen my mom moving around. he said she went into this man's room one day and got out of her wheelchair and sat in a chair in his room and fell asleep. the aide's got her out of the chair and into her room and she went right back to his room! so they let her sleep in the chair. i don't know what that's all about and i'm not even going to spend any time guessing, because you can't know what's inside the head of an alzhewimer's patient.

it was pretty much an uneventful week with her, thank goodness. i needed a break from all the things that i have to do to keep her medications straight and her doctor's informed. i'm going to get this clothing and her being in bed at 1pm straightened out soon.

thank you for sharing and caring,
jeannie

[mrsQ]

(((hugs)))

Last night I realized I was being short with my MIL, I refuse to allow myself to get to the point I'm so burned out I'm not doing her care right. A few months ago now I told Mr. Q I could not do this. Forget the stress issue just physical disability wise I can hardly stand. When I told him he told me to get out of the house.
I'm still here for now but not sure what I'm going to do. After 12 years of taking care of him & his mom I just don't know what to think.

Jeannie- could her clothes not be fitting her right for some reason. That happened with MIL I found hers that were to small in the bottom of the closet.

[tic chick]

hi karen!

well, that certainly wasn't nice of your husband to say! was he having a bad day or do you feel generally unappreciated by him? because i think if you feel you're generally appreciated, it's time to take a stand. i respect you for taking your mom out of a situation that was bad for her, but in doing so you're putting your own health in jeopardy. mrq has to understand that or you're going to have to show him what's it's like without you there, or something. it is harder when your spouse doesn't help or appreciate you and it's his mother, too.

my marriage was declining the last 10 years and one day after a particularly nasty and unappreciative remark towards me from my now ex-husband, i told him to pay his mom's bill every month and fill out her medicaid forms every year by himself. that was that. i didn't back down, so he just had to do it. i will not take chit from anyone, especially if i am doing something for them that helps them.

karen, i think they put her clothes there when they moved her or cleaned her room and they were too lazy to get them out. her closet was a mess! there is noone in the room with her and it looks like they're using the empty part of her closet for storage of diapers and things. i just bought these clothes around christmas and her weight has been steady since them. i always buy her knits and clothes that go over her head and pants with elastic waists, so a few pounds either way shouldn't make a difference.

take care of yourself, karen . nothing is worth your mental or physical health, because things are so much harder without those.

oh, i read your post about the bedrails. there is a place here near detroit that cuts foam to any size you want. maybe you could find something like that where you live or order it. you could then improvise some kind of covering andjust safety pin it or tape it together. i don't know if you have like a single bed side rail or one that has many rails through it.

(((hugs))),
jeannie

[Buttons2]

have a question: when my housemate calls a dogwood a cottonwood should I correct him or not?

also,does VERY short term memory loss mean signs of dementia? (I'm talking seconds not minutes)?

guess that was 2 questions eh? at times not sure about my OWN mind!

[mrsQ]

I would correct him once but if he does it all the time why put yourself through it?
There are so many things that can cause short term memory issues I think they have to look at a few symptoms to know not just one. I know there are times when my neurontin is making me all loopy I will know I'm worried but have think what it is I'm suppose to be worried about.

[Jo6]

It's been awhile since I was here, but I had to go past half the page to realize I was indeed in the Alzheimers Disease Forum! The way things are a lurker or newbie may not know they are in Alz. Forum.

I finally found this thread and I know I am still in Kansas. Whew, was a bit confused there for a min. I'm afraid I'm not getting all the up-dates as to how our caregivers are doing and also how all the LO's are.

I think about all of you every day and I sure miss hearing from you. I trust things are as well as possible for everybody.

I really don't have anything to add, just wanted any body that comes here to know I love you and my prayers are with you all.

Alzheimers is a horrible disease and it does unspeakable things to all concerned. My MIL has been gone a year in May. Some ways it seems she is still here. Of course I miss her, but she is in a much better place. For whatever reason I have not grieved for her. Maybe I do that before she did die. 14 years is a mighty long time to grieve for someone . It is also strange to grieve for some one, watching, waiting and expecting to see them pass on not because you don't love them, it is just hard to see day by day, month by month all the changes.

I've decided the grieving was done little by little for 14 years. May God Bless each and every one of you.

Maybe next time I will know something that will cheer everybody up:)


(((((( hugs for everybody)))))) Julia

ps: I should have read Pati's post on Grief
before I posted here. Thank you Pati and also to
Jeannie for her wise words.

[tic chick]

hey everyone !

julia, it's so nice to see you and thank you for thinking about us even when you're working on your own physical probs .

pati, i agree with karen. i would correct him once and then forget about it. it's like me always trying to tell my mom the truth, sometimes it upsets my mother more than it helps. your other question about whether forgetting things in a few seconds...well, some meds cause those problems, sometimes just age does, but if it occurs with regularity it prolly means the person is already forgetting things in a short time and short term memory loss sounds like dementia to me. sometimes it might seem like they almost aren't paying attention, i remember that with my mom, but then it just got to be too often and about too many things. if you're noticing it that much, i think you have to trust your gut.

i saw my mom last wednesday. she was up and talkative. the doctors discontinued some of her meds, her water pills (lasix) and her cholesterol pills (statins). they said they just wanted to see if it made any difference in her condition, because it seemed that she was weak and these drugs can cause weakness. they called me and told me about it and i was okay with it. i looked at her ankles on wednesday and they didn't seem to be swollen. i talked to the man whose wife used to be in the same room with my mom. he said she was in the hallway the previous night and throwing kisses to everyone. he gave me his email address in case i ever wanted to ask something about my mom.

my mom's birthday is on a sunday this year, the 29th of july. i don't think she even knows what a birthday is anymore, but i think i will buy her a cake and bring some ice cream. i'll ask my sister and brother to come and maybe we can go outside and eat the cake.

i always have this feeling that my mom knows exactly what she wants to say except the right words aren't coming out. when she talks she hesitates before she says a word and sometimes i know she knows the word is wrong. it bugs me because i think she realizes it...and it's frustrating for her and for me. the fact that she doesn't know who i am though makes me feel that her mind is really not all there though. for some reason that gives me comfort, cause i would hate to feel that she is so frustrated with saying the wrong words and that her mind is completely working...that would be hard to bear. that's why i feel so much empathy and sympathy for kat, cause she knows what is happening to her and that must be so hard to bear.

thank you all for sharing and caring,
jeannie

[mrsQ]

Hi Juliea thanks for bumping up the thread. I sometimes worry about posting here because I don't want to bring up the bad things and get people down.
I have tried going to the alz ***. site and chatrooom and there are some nice people but most in the very early stages of this & they don't want to hear about how far down this road you can get.
Skip is still the same. She talked to us for a while there but the past month it will be days between any response even a blink or nod. She is getting the contractures in her legs now like her arms and moving them for her does not seem to help. Her hands are a mess because she keeps them closed so tight all the time & won't leave any sort of cushion in there. She is still eating ok thanks to the medication but honestly there are times I feel giving her that was a disservice to her. Sometimes on Sunday I get her up in the rocking chair to watch the cooking show guy on qvc and she will pay attention to him other than that she is not focused on anything real.
Mr. Q has been helping a little more with her care so I get a little sleep. I need 24 hours away soooo bad it is not even funny but can't figure out how to make it happen.

[Buttons2]

Karen,why not call the local Area Agency on Aging & ask for help? you do need a break! anyone would.

as for not writing about the last stages? I urge you to write whatever you want. I've learned sooooo much from all of you wonderful caregiver's! and you never know how many lurkers you can help.

I honestly do feel like my own brain is going. and I'm not joking.

Jo,great to see you back!

somewhere I started a thread about my mom? no idea where it is but today I got a call from my sister & she told me the folks lost their power for 2 days. my first thought was Mom didn't pay the light bill. she controls the checkbook! Dad would never admit to me what's going on over there. frustrating fer sure!

also neighbor just returned from visit to MI for her parent's 50th annie. her dad didn't know her name. he was diagnosed with Alz. several years ago & put on the Aricept trial. her mom refuses to ask for help until the day he doesn't know who she is.

the more stories we share the more insight we gain. Alz. is popping up in alot of my favorite author's books these days.

PLUS for some reason I researched Binswanger's disease. it's the worse of the vascular dementia's. hypertension & diabetes are 2 of the prior issues. well I happen to have both & so does my housemate.

hope nobody came here to read uplifting positive things! LOL

[Jo6]

Pati, you are right about writing how we feel and every stage of Alz. we know about. I learned a lot from all of you and still am drawing strength from this wonderful group of ladies. Hang in there Pati. I don't think you need to worry about your own sanity. I confess there have been many times I worryed about myself and even now I feel so isolated and alone. I jusp up and start trying to do constructive things. I've had to lay down do much it is driving me crazy.

Joy, I'm glad you are posting again. you and I and of course Christina all have been down for one thing or another. You and Christina both have some very bad issues with your feet. I do feel so bad for both of you. ((((Joy & Christina))))

Karen, honey you post here all you want. Never feel shy or that you have to be upbeat to post here. I know you aren't well and I know a little bit about some of your issues because I, in my old age have developed Scoliosis and it has made grave problems with the osteoperosis. It's also causing bones to bend toward my spine, right about low back. Now I know why the siatica is hanging on and on.

I know you are much younger than I am and you have suffered from Scoliosis from birth? I can not imagine how you are lifting your MIL. You know you shouldn't and I do feel for you. It made me very angry at Mr.Q for saying what he did to you about not being able to take care of everybody. Honey, Contact the people that Pati mentioned and see if they will help out some. Rest is most important for your own health issues and the added stress, well I do not know how you have done this for so long. Please Please get some help and some rest.

If Mr.Q is helping more, then that is good and high time, but you need more help. I pray you can find some soon. Please don't hesitate to post here. You can rant and rave and cry and scream and anything else you feel like doing !!

We all love you and appreciate the way you care for other people. Now it time to take better care of you, yes? Karen we all love you and pray you will find the strength to do whatever you feel you need to do.

Jeannie, I hope you are still feeling better, but don't you forget to rest too. My love and prayers to Kat. I miss her and hope she will visit us soon.

Take care all, Julia s

[mrsQ]

Thanks Julia. I don't ever actually pick her up I couldn't if I had to, I use a hoyer lift and honestly I mostly leave her bed but the repositioning her to change her and stuff does wear on me. Something different is going on with her and I wonder how long she can go on like this, she is so pitiful now. She eats I would say around 500 calories on a good day which is better than before but you wouldn't know it to look at her. Her skin being so thin is something that scares me to death. Just taking her gown off can tear the skin on her arms which is what started us moving her from the NH. her arms were just awful because they would not take any time when dressing her. We have been told so many times that she only had a matter of weeks to live that I know not to try and even guess but I honestly feel like it is just any day now.

I hate your having more pain in you spine and having to deal with scolosis on top of the rest of it. I'm trying to do better taking care of myself & I know the main thing I can do is work on getting my weight down to something closer to healthy so I'm focusing on that for now. I was shocked to find I gained so much weight since starting to be a full time caregiver again. I'm making myself log ever bite I take now.

My lady that comes to sit with her called and is going to do some extra hours Wed and Fri so that will help some. I think I will just plan to sleep as much as possible tomorrow and Friday I may try to get out of the house some. No idea what I will do but at least it will be out.

HOpe your all having a good day, my jack russel just came in fussing at me so guess he is tired of me looking at the computer he is so rotten .
((hugs))
Karen

[Buttons2]

well this morning my housemate put his pill container in the frig. not a good sign eh?

my dad called yesterday & he was mad cause my son hasn't been to visit or even call them. I asked how mom is doing & he said she never goes anywhere & spends her day pulling weeds. he will never admit to me that anything is wrong.in fact this was the first conversation where I felt his own mind is slipping.....understandable. living in denial is never easy afterall. and lies have a way of catching up to bite a person!

[tic chick]

oh, pati ,

not a good sign at all .

i read your post in emotional support about your dad and his behavior, sorry you had to go thru the anger over that. it is easier to remember things when you tell the truth . i'm sure his denial of your mom's probs is deep, something he's not ever going to say anything about.

my mom's birthday was yesterday. she is 84. i don't think she even understands the concept of a "birthday". i'm going to see her on wednesday. there really is no point in seeing her every week and right now it's impossible, anyway.

just try and accept that your dad is who he is, there's not a darn thing you can do about it and it might give you some peace to not buy into his manipulation if you know that's what's coming.

, jeannie