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I'm new to caregiving...looking for some help

Posted by Mimi427 (My Page) on
Tue, Apr 5, 05 at 22:58

My mom was diagnosed two year's ago with Alzheimer's - moderate stage. She moved in with me in November, 2004. My mom was always a very independent, vibrant woman and now all she wants to do is sit in her chair and watch TV. I can't get her interested in anything. She crocheted all her life and will not even look at it. I work full time (home office) and have a caregiver here during the day, but my mom refuses to accept any personal care help from her; she only wants me. I am frustrated, depressed and feeling very sorry for her. I have two sisters that are basically useless. I know I need help...do any of you go to support groups, or do you find this site enough help?


Follow-Up Postings:

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RE: I'm new to caregiving...looking for some help

Well I have no support groups in my little town. I use this forum for venting, and questions. I dealt with a dad with Dementia from TIA strokes, not quite the same, but I know a lot of the folks here deal with Alzheimers and can give you lots of advice.
I know I had to put my dad in a nursing home, he could not be left alone, and I care for a disabled son, so could not move dad into my house.
Just keep coming, we will be here to help.


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RE: I'm new to caregiving...looking for some help

Hi Mimi...my mother had a 7 year bout with dementia. I tried a couple of support groups....the first was a local ALZ group. I really went there only once because it was so hard to get there and when I went, only 2 people there and not helpful at all. Our local JSF (Jewish Family Services) held an informational series which I attended...by the time I went to that I had figured most of the "angles" out and just needed support. So my best help was here at the website. BUT, I would encourage you to try those in your area...they may be a better fit for you. It IS a long and difficult road and one needs all the help one can get. Important not to become isolated, and with you working from home, I can see that that could happen. Take care...and WELCOME! Drop in any time. Derry


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RE: I'm new to caregiving...looking for some help

Hello and welcome to our little corner of the world, Mimi.
My Mother was recently diagnosed with Alzeimers, and is in late 2nd, early 3rd stage. It's difficult, isn't it? Thank goodness she accepted help from her care-giver and continues to treat her like family (we all do). Perhaps a change in care-giver would help? Maybe she just didn't bond with her present one? I know we've had others here when her regular gal couldn't make it, and that just made us more thankful for the one she has! Could you disappear for a while each day when her care-giver arrives? Maybe your Mom would be more accepting of the situation then.
I know this may seem minor, but does her care-giver wear scrubs? My Mom was horrified when one gal turned up in day-clothes to bathe her....she said she needed a "nurse" instead! Small details, but it sure made a difference to her that day.
Keeping them busy is another kettle of fish, isn't it? Particularly when they're still aware enough to know they can't do things they used to do. My Mom enjoyed those word-find books with larger printing. I was told now that she may enjoy a colouring-book/crayons again, or those wooden puzzles for children. Another thing she enjoyed doing was going through stacks of old black and white photos and labelling them on the back as to who was in the picture, what the occasion/year was. Believe me, later on those will remain mysteries. Let her organize a photo album. If her finer motor skills are dwindling, there are other options.

I hope she accepts a personal support worker soon...it relieves us for a while and given a few hours, we can actually leave home! ;-D Just have her "visit" for now, and don't push the relationship...I'm sure she'll find the right fit and be fine with it soon.

For now...continue visiting us and read our old posts...there's a wealth of information on here!

Blessings
Linda


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RE: I'm new to caregiving...looking for some help

Thanks so much for your responses...just knowing others are out there that understand what I am going through helps. Linda, you mentioned your mom is late 2nd, early 3rd...I'm curious, how do you know that? I've read SO much on Alz...I've spent hours and hours at nite reading whatever I can find on the subject and even though mom was diagnosed at stage 2 (two year's ago), I feel as though she's beyond that. She does still recognize her immediate family (has a tough time with the greatgrandchildren) but doesn't remember a thing...at times, she remembers something from the past, but usually if I ask her something all I get is "I don't remember".
As far as the caregiver, she is an angel. I really feel that the problem is my mom, not the caregiver. My mom has been widowed for 40 years (my dad died when she was 41) and she is use to me and my sisters helping her out...she never drove, so we always ran errands with her, doctor appts, etc. Now, I think she just wants her daughters to continue to help her. She will allow her caregiver (CG) to get her meals, give her meds and spend time together watching TV. But if she needs any assistance walking, undressing, shower, etc. she wants no part of her...she insists that I do it. And yes, I do get out of the house daily. The CG is here from 7a - 4p...I work in my home office in the morning, starting at 7a and by noonish, I leave and go to the doctor's office (I work for a Dr) and spend a couple of hours there...I've come to realize that mom does better when I'm not there, as far as depending on the CG.
My other problem is that my mom is a holocaust survivor, so she has major issues from that. She's never really trusted people other than me and my sisters, so I wonder if she'll ever really become close to her CG...I guess there will come a time when it won't really matter, because she won't recognize anyone.
In any case, again, thanks so much to all for responding and I can't tell you how happy I am to have found this site... I have felt so alone, and isolated and trapped...I now feel I have a place to go where people really understand. I mentioned in my first message that I have two sisters that are "useless". I wasn't really being fair...they do pick up my mom on Sunday, from 1p until 7p and each pick her up one Sat nite for dinner, giving my husband and I an opportunity to go out for dinner alone two nites a month. I guess what I'm feeling is that they really don't understand how all consuming this is...even though there is a CG here...but...she is here when I am working...anyway, I've rambled on enough....again, thank you and bless you all for being there...Mimi


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RE: I'm new to caregiving...looking for some help

don't worry about her not being interested in anything. It's posible that she is no longer capable of being interested in anything. Doing things requires a certain amount of the ability to concentrate and some A.D. sufferers just can't. If she is content just sitting and watching TV, let her. Time passes differently for them. As far as the problem of personal care, there's no solution except simply not do it and then maybe she will accept an aid doing it.


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RE: I'm new to caregiving...looking for some help

Hi Mimi and welcome! although i do not care for somewho who as Alz., i happen to live one block away from a mansion that the Sisters of St. Joseph owned, this was changed into Day Care for Alz. patients, there is also like a hospic for families (it is about 41.24 - got to add those taxes in there), and the Alz. society is a going concern in my city (in Canada). the folks there are always fundraising and they have craft sales, crafts that the patients make. i do not have anyone to come into our home, my son, daughter and i are it. i do know how you feel about relatives being useless, last time my al saw his mother was on his 50th birthday at the end of october when he was in the hospital with a heart attack the lasttime last week! she lives very close to us, but couldn't even find the time to visit at christmas and she had to drive by our house to get to her daughters! to sound nasty, i have basically written these kind people off, and use my energy on other things. i am a quilter and a knitter, but haven't done anything in about a month, i think it is depression for me even though i am on paxil, maybe your mom is depressed too. here i am rambling on and on, but if you look at my other posts, if i make it from when i get up to lunch that's good, lunch to supper and supper to bed. i have also learnt not to schedule anything other than doctor's appointment, more than 2-3 days in advance, because something always happens. again welcome! debbie


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RE: I'm new to caregiving...looking for some help

Hi Mimi, I'm sure you will get lots of support here. I am a caregiver for my uncle who also has Alzheimer's. Like your Mom, he was always very busy and productive during his lifetime. Now he reads the paper sometime, watches TV, but I don't know if he retains anything at all. He sleeps a lot. It is hard, because you feel like they should have something to do...I'm glad this forum is here. Lots of good info, and you have different prospectives for problems, or just to vent...


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RE: I'm new to caregiving...looking for some help

Thanks, Patti. I think the toughest thing for me right now is accepting my mom doing NOTHING. When she first moved in, I had made arrangements for her to go to a day care specifically for people with AD...she spent two hours there one day (I stayed with her) and an afternoon the next day and refused to go back. Since I work full time, I had to get someone to be at home with her. We've tried to get her to go to bingo, crochet or knit and now with the weather turning so lovely, get her to go outside...she won't do anything. The doctor said she was depressed and put her on meds six month's ago, so I don't think it's depression at this point...it's so hard to see her just sit there staring at the TV. Maybe it's the control freak in me...I want to "fix" her and I know I can't


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RE: I'm new to caregiving...looking for some help

Oh, Mimi!!!! It's so hard to just see them sit without any interest in anything, isn't it. We keep feeling that if we say or do something, eventually we will hit on the one thing that will ignite a spark. Unforunatly, it isn't likely to happen. And if it did, it would probably be only for a short while. I agree with you, it probably isn't depression as we understand it. Medication may or may not help. It's worth a try.
PB


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RE: I'm new to caregiving...looking for some help

Peabee...I know there will be much more difficult days to come, but for now, watching her do nothing is very very difficult. When I try to talk to my sisters about it, they say "you need to get out of the house"...they just don't understand...even when I'm out of the house, she's on my mind...I know exactly what she's doing...nothing...I guess in time I will learn to accept it. Do you have someone with AD? If so, how long have you been caring for him/her?


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RE: I'm new to caregiving...looking for some help

Mimi...we had a gal from the Alzeimer's Society (Canada) come in and do an assessment. However, just in the first short chat she had with Mom, she realized she was in late 2nd, early 3rd stage.
I "googled" 'stages of alzeimers' and found lots of information on what each one consists of, but I gathered from her that Mom's inability to give names to people who should be familiar to her, her incontinence (both) beginning, her inablity to carry on ANY sort of conversation at all, were determining factors in her assessment. If I ask my Mom "How are you today?", she'll give an inappropriate answer, such as..."No...I'm not hungry...", if she answers at all. Seems almost like she realizes she doesn't understand the question, so she doesn't say anything. I can't hold up a crayon and ask what colour it is....or the colour or her bathrobe. Or what she wants for lunch...anything, really...She thought I was her sister last week, so I was. ;-) Funny, though...she can remember our dog's name much of the time! Hmmmmmm....

Sweetie, if we can't laugh sometimes, we'd be doing a lot of crying. As for them just sitting and not doing anything, we can't compare it to us in that situation. As their thought processes are diminished, I doubt very much they're thinking: "Gee. I should be doing something." Even tv...she used to wait for her soap opera to come on at 4:30pm and watch it intently...now it could just as easily be a cartoon...Her favourite game on tv, baseball, was on and she didn't recognize it. Or knew it was a game.

I hope you call an Alzeimer's Society in your area for more information and visit. They also have respite people who can sit with your Mom, even just to visit so that you can get away.

What you shouldn't be doing is worrying. I went thru that, and believe me, it isn't all that productive. ;-) This is a process they're going through alone, but with our support. We can't 'make it better' for them, we can only make them more comfortable while they go thru it. You must take care of yourself, Mimi. I've been told that many times here and it finally sunk in: if you're not happy and healthy, you can't care for someone else's happiness and health. Just does't work. So when you go out, BE out. okay?

Hope that helps, and hope I didn't pontificate too much...I tend to do that....;-O

Blessings
Lindi


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RE: I'm new to caregiving...looking for some help

Mimi, Welcome...this is certainly the place to come...so much wisdom and support and this is so important while you are on this journey of caregiving....I call it "our journey"...mine, Mom and Dad's...we are going into 9 years with my dear Mom....I remember when she would just sit and do nothing but watch T.V....one of the things that I did was get a strofoam ball and wrap red yarn around it and then give it to Mom to finish for me....that worked for awhile...just sit pictures near by and ask her to look thru them for you...I would ask Mom to help with folding the clothes...wash rags...it is so hard to watch our loved ones leave us...Mom doesn't know us most of the time...she knows we are the ones who love and care for her....in my journey I realized that when Mom got to the point of not knowing us,how to do most things.....that if there was a blessing to this horrible thing...called Alz....that she doesn't remember what she doesn't remember!! We are here to support and listen. God Bless, Nora


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RE: I'm new to caregiving...looking for some help

Hi Mimi, So good to have you join us! It does take a while to accept one's Mother's condition.
My Mom first had a stroke & then dementia quickly set in her life...and mine....and my brother's plus everyone else in the family 2yrs ago. With many falls preceding this & thereafter we had no choice but to place Mom in a safe environment. It does seem to be ALZ & a support group thru a local hospital meets once a month at their education ctr. It has been very helpful.
This site being available always has been a lifesaver for me. Sometimes simply being able to get my frustrations out is all I need & other times advice is wanted. It works, doesn't it? A great support system is right here.
And, a big thanks to all who participate.
Blessings to you, Mimi. Sharlee


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RE: I'm new to caregiving...looking for some help

Nora,
Thanks so much for your response...I feel so fortunate to have so many people respond over the past 24 hours. Your idea of a styrofoam ball with yarn is fantastic. My mom knitted and crochet her entire life...learned while in school in 7th grade and actually did it for a living while raising me and my sisters. Now, I have bags full of yarn and I've tried to encourage her, but she won't (I realize now it's probably that she can't). But, if I get the styrofoam balls, maybe, just maybe I can get her interested in winding the yarn around them.
I cannot tell you how much this forum has helped me already...For 4 1/2 months, I've been so frustrated with my mom constantly refusing everything I've tried to get her to do. At times, she seems completely fine, so clear headed that I lose sight of the fact that she's losing her mind and at times have actually argued with her!!! How ridiculous! I'm beginning to realize that it's not that she doesn't WANT to do anything, it's that she CAN"T, or is AFRAID that she can't. I can't even begin to imagine what it must be like for them...what are they thinking, what are they feeling? How frightening it must be for them. These are thoughts that I torture myself with. I so want to cure her and take care of her; all I can do is be there for her and let her know that I love her and will always be here for her. Every day, when I leave the house (I go to my main office for a few hours 3 days a week) she asks me "where are you going?" and every day, I say "I'm going to the office" and she says "be careful and make sure you come home" and I walk up to her, every day, give her a big hug and a kiss and I say "I will always come home, and I will always love you." I guess that is all I can do..let her know she is loved and truly cared for and that I won't let anything awful happen to her.
Now that I've rambled on so....I do have a question, if anyone is even still reading this...How do you manage caring for your mom knowing that she doesn't have a clue who you are? It must just tear you apart.One more thing Nora...nine years is a long time...how was she through the majority of those years? Was she aggitated? Did she get along with her caregivers? Did she put up a fight about bathing?...I'm done for now....thanks again...you've been more help than you can ever imagine...my heart goes out to all of you for taking the time to respond to me and caring enough to do so....


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RE: I'm new to caregiving...looking for some help

Hi, Mimi...last week I was her "sister", rather than her daughter. And she didn't answer when my darling hubby asked her my name. I was just "her sister". I loved her as a sister would. As a daughter would. I have a friend who's Mother doesn't recognize her at all, and my friend tells me that she's just "a nice lady who comes to visit" according to her Mother.

It doesn't matter who we are: love can come from everyone and anyone! Just the fact that you hug her, love and reassure her is everything to your Mom. As long as she feels loved and secure, she'll feel relaxed and comfortable.
It's not who we are, it's what we give. I couldn't believe how my Mom's face lit up when her personal support worker of 1 1/2 years came in this morning! It's like she was a long-lost friend! Love is universal.

Blessings
Linda


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RE: I'm new to caregiving...looking for some help

My mother had a brain tumor -- not Alzheimer's -- but I recognize so many of these things as I read everyone's posts. She had serious day/night distortion; then she had no sense of time; when she'd watch coverage of the Iraq war on TV she'd think she was back in the 1940s and it was WW2; she thought all of her sisters and brothers and her mother were still alive; didn't think she had any children, etc. I am not sure she always knew I was her daughter. She recognized me -- and I would give her a clue by greeting her with "Hi Mom!" -- but occasionally she'd think I was her sister. I don't know if she thought I was just some nice lady who came to visit her or drive her to appointments (when she was still at home), etc. The decline with her happened incredibly quickly, but of course that was the progression of the tumor.

In the initial stages, I too would actually argue with her. Because everything happened so rapidly (literally like someone turning a light switch off), some part of me wanted to say, "oh come ON! Snap out of this -- you must just be yanking my chain!" It was the hardest thing I ever went through and my heart goes out to all of you who have been dealing with this for so long.

I never had the time to seek out a support group, but now that it's been nearly 7 months since her death, I am ready for a grief support group. I am sure we can all find comfort by talking with others who are experiencing the same situations and emotions.

Blessings to everyone.


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RE: I'm new to caregiving...looking for some help

Lasershow -- when you mentioned "oh c'mon, snap out of it"...does that ring a bell with me!!! In the beginning, I guess it is difficult to really understand what they are going through, especially when they seem okay "in the moment". At first, when she first moved in, I thought she was just looking for attention, but then I realized that she really needed me to assist her.It just seemed so odd, because she had been living on her own (assisted living) so when she asked for my help, I thought she just wanted attention. I don't think my sisters and I realized how much help she really needed before she moved in with me. I think, because of her personality (stubborn, very independent) she had struggled to do things on her own without letting us know. Yes, we had been paying her bills, filling her medication boxes, calling her to remind her to take her pills. It wasn't until one day, she wasn't feeling well and I went to be with her and while there, I noticed that she had taken her Mon and Tues morning meds and it was only Monday! When I questioned her, she insisted she'd only taken one day...I knew it was time...
For three months, she has fought me all the way, insisting she doesn't need someone here to "babysit her" when I'm gone, she doesn't need assistance in the shower, etc. It is only within the past month that she is accepting and asking for assistance. I feel so bad for her and all that go through this...having to give up all their independence and knowing their memories are fading away. It's just so sad....Be well and take care to all, Mimi


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RE: I'm new to caregiving...looking for some help

Mimi, your mother sounds like mine -- fiercely independent. It wasn't until after she was diagnosed that one of her neighbors told me she hadn't felt well for a long time. This neighbor told her she should tell me, and she should get to a doctor, but Mom didn't want to worry me, saying I get "so nervous." Argh. And as her illness progressed, she couldn't remember to take her pills -- swore she took them and they were still in the box, etc. Everything happened so fast that I had no time to catch my breath; it was like watching a train wreck.

The charge nurse on my mother's floor in the nursing home helped me to understand and deal with the dementia stuff. She said just to agree with her, she's in her own world, and she is happy. It is hard for us to watch, but thankfully they are not aware of their state. I've often thought that the adjustment to a nursing facility must be hardest on those who have full command of their faculties. They are aware that they need to be there and probably aware of all that they cannot do any more.


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RE: I'm new to caregiving...looking for some help

Hi Mimi... This forum is such a blessing. So many good posts have been written in this thread. My heart goes out to all of you whose loved ones have this dreaded condition. May God minister peace, strength, comfort, encouragement, wisdom, love, and favor to you and your precious family members... ~abreeze


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RE: I'm new to caregiving...looking for some help

One of the things that is hard to accept is that with lost of memory is that the CONCEPT of relationships is also lost. They no longer understand the relationship of mother/daughter, husband/wife or anything like that. They remember "sister" because that goes waaayyy back when they were young. Your mother entered a new relationship with you. Try to join her as she sees you, not as you remember her. It's easy to say things like that, and very hard to do, isn't it!!


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RE: I'm new to caregiving...looking for some help

Mimi, I have started to post to you 3 times and something has taken me away. All that have posted have given such good advice....you ask if Mom was aggaited...at the beginning we went thur some of that...but the Lord has blessed us...Mom has had and still has such a sweet spirit...we have not gone thur alot of what other have....when I see 9 years written down....I can't believe it has been that long for us....with God's Grace and strength we just take it one day at a time....oh we have some memories...and I cherish them...we are at the point of Mom not talking much at all...I so miss not having her to talk to...tonight when I was bathing her and getting her ready for bed...she had such a sad look on her face...and I hugged her and told her everything was going to be o.k. That is all you can do is hug them, tell them you love them and just do the best you can to assure them that you are there...your heart breaks and the tears come but I allow that...then I make the choice of thanking God that I have this time....with her and Dad....it is most certainly not easy...hardest thing I think I will ever do in my life time...but...it is also so full of blessings. Take care and remember that this is the place to come...God Bless. Nora


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