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Mom's Alzeimers assessment

Posted by Glitter53 (My Page) on
Tue, Apr 5, 05 at 13:05

Well, she didn't even do one. From chatting with Mom, she said it's very evident that Mom's in final 2nd to early 3rd stage of Alzeimers. That was a shock to us. I wasn't familiar with the stages, but having talked to Susan about them, yes....Mom's in stage 3. And it happened so quickly! Susan explained that, too: the Aricept she was taking for her memory-loss kept her at a certain point in her cognition. When it stopped working (and it does), instead of the long slow downward slope of Alzeimers, it's as if she was dropped off a cliff and barrelled her way through the first two stages in very rapid succession. And, having more minor TIAs has exacerbated the situation.

So. Here we are, waiting for CCAC to start the paperwork on her placement. One thing that Susan did say that made me feel good, is that Mom must have received very excellent care for the past 11 years she's been with us, as she's very comfortable, not aggitated, etc. AND that as far as us caring for her, it's not only unfair to us, it's also unfair to Mom, who need professional care now, to see her through the final stage. All I know is that we're exhausted.

CCAC should be here within a half hour, so we'll see what comes of that, and what the waiting list is like. I'm guessing 6 months to a year...who knows??

Just thought I'd drop a quick note...things sure are changing quickly...

Blessings
Linda


Follow-Up Postings:

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RE: Mom's Alzeimers assessment

Linda, I think you may not need to wait so long. Others on this forum may have differing opinions, but I believe that placement goes according to need. That is to say, someone in your mother's condition, who really seriously needs to be placed soon, might be bumped up ahead of someone who does not have such a dire circumstance. Is stage 3 the last of 3 stages, or are there 4 stages of Alzheimer's?

This is such a terrible disease. My heart goes out to you, but know that you have done everything you possibly could -- and then some. You should have NO regrets whatsoever.

Hang tight.


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RE: Mom's Alzeimers assessment

Linda, I also hope that you don't have to wait as long as you think to place your Mom. I think that every little thing that we do to shed light on our circumstance is a weight lifted off our shoulders...here is a site that may give you more info on the stages of Alzheimer's. It's www.alz.org. Blessings to you and your Mom.


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RE: Mom's Alzeimers assessment

Hi Linda,
Oh my! Guess you've been going through more than you realized, my dear. I would also like to think you will have success in your Mom's placement fairly quickly. Let us know after CCAC sees you.

Prayers are with you, Sharlee


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RE: Mom's Alzeimers assessment

Thank you, Lasershow, Patti and Sharlee....yep...the diagnosis was a surprise...and stage 3 is the last stage of Alzeimers

Well, we signed the papers today to place Mom and it wasn't easy. Intellectually I know it's the best for everyone, but emotionally I'm feeling a bit guilty...like....I've kept her for 11 years or so, and as soon as it goes downhill, I put her away!!! I know, I know...the light at the end of this tunnel is the thought that we'll have happier meetings when she's placed. That the things that are frustrating both of us now, the mundane things, will be taken care of by others, so that we can enjoy the time we have left and have lunch together, go for drives, or just take her for walks in her wheelchair: things I'm just too tired to do now. I'm hoping for more pleasant experiences with her when I can feel better, too.

As for how long it may take for her to be placed, I honestly don't know. I have no idea how often openings occur. We had our choices of three facilities, but fingers crossed for our first choice...;-D Their basic rooms are private, with shared bathroom. Mom's always been a fairly private person in her home, even tho' she loves company and visits...I just want her to be comfortable...But...who knows?

Thank you for your sweet words; I'm feeling a bit catatonic right now, having made that decision, and a bit of a traitor. I imagine that feeling will go away when I see her settled into her new home. As the lady from the Alzeimers Society said, it will be much better for her to be cared for by people who know how to deal with Alzeimers, and she'll have more socialization, more stimulation there.
And more fun when we visit! I must say, that I couldn't have asked for two finer people to turn to at such a difficult time as this than our case-worker from CCAC and the Alzeimers Society. We're very fortunate here if they're representative of the calibre of care we've experienced recently.

The saga continues....She has a trial-visit in one place April 12-14 to see if she wanders, in preparation for her two-week placement in August when my darling hubby and I can sneak away together for a while. I hope that goes well!

Again...thank you so much...
Blessings
Lindi


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RE: Mom's Alzeimers assessment

Don't think of it as 'putting her away'. You are simply placing her in an environment that will probably be the best for her. As much as we hate to admit it, sometimes those that are professionally trained to handle the Alzheimer's patient can do far more than we can. It doesn't show a lack of love or caring to do what may be the best.


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RE: Mom's Alzeimers assessment

Lindi, Sending thoughts and prayers your way. With this journey of alz. we have to walk one day at a time and as PeaBee stated...it doesn't show a lack of love or caring...with your decision you are showing just how much you do love your Mom...the one thing that I have learned is that "it is our own personnel journey and that we can't look at what others do...we have to do what is best for ourselves and our loved one....no one knows...until they walk in our shoes....you have and will continue to love and care for her....it will just be a little different!!!! I pray that all will go smooth in the days ahead. God Bless, Nora


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RE: Mom's Alzeimers assessment

Hi Linda! how are things going today? please don't feel guilty, what you are doing is something called "out of love". i haven't e-mailed you because i thought maybe you need your privacy right now, your emotions must be very,very high right now. i'm glad you like your case manager through ccac (community care access, for all of you non-canadian folks, they are like an umbrella of sorts, they contact agencies that can help you), but in our instance our case manager, never did visit, too busy she said, the VON's very helpful, especially when they used to come 4 times a day! However, i still do not have respite care and this has been several years, apparently our name is still on their list. so probably if it was me, i would phone and as they say touch base to see how the llist is going, i know here in our city, there is about a 3 1/2 year waiting list, and they go according to where you are on the list, not how badly you need it. some folks are taking up beds in the hospital for about 2-3 years. Linda, when your up to it, e-mail me, i don't want to invade your privacy, ps haven't seen "S", because joy of joys, i haven't had to go and get groceries!!! debbie


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RE: Mom's Alzeimers assessment

Hi Linda,
I was just re-reading some earlier posts and came across yours. You mention that your mom was on the memory drugs and apparently, when they stopped working was when she rapidly went into stage 3. Do you happen to know if this is a common occurence for AD pts taking these meds? I don't even know if you can answer this, since the Namenda is a relatively new drug. My mom has been on the combination since Namenda came out last year, and so far, I believe they are working. I was just wondering if you had discusse this with your doctor, or someone else mentioned it to you.
I hope your mom is still doing so well in the NH...I think of you and all the others on here often...as busy as my life is, and as much as I have on my mind daily, I still find myself coming to this site several times a day looking forward to reading about how everyone is doing. Caregiving is such a difficult thing to get used to (for me, it's only been five months) and to live with on a daily basis. What I have learned to focus on is just loving my mom and caring for her as best I can. I no longer dwell on getting her to do things; whatever makes her happy is my goal. I find lots of warm hugs and telling her I love her throughout the day really makes a difference in her attitude. Mimi


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RE: Mom's Alzeimers assessment

Hello, Mimi...Yes, hugs do help...for them and from our friends to us!;-)

It was the gal from our Alzeimer's Society here that said that to me, so I didn't question it...I was still in shock from her assessment. But it does make sense: she went from perfectly normal (for a 91-year old) to the point where now, after 5 months, she can't even feed herself in the NH. It's all been too fast: no one ever had time to adjust to what was happening; it was here before we knew it. The drug she was on was Aricept. Aricept is not a cure for Alzheimer Disease as it does not affect the underlying degenerative process of the disease. So, I'm assuming, like any other medication, the effectiveness of it can decrease over time.
As for Namemda, I have no information, but suggest you 'google' it or speak to a professional about it: perhaps a pharmacist could help initially...

Yes, Caregiving isn't for the faint of heart, and Alzeimer's is a sad ending for a vibrant life. It's so difficult to see my Mom so helpless: I only hope she doesn't recognize the position she's in right now. It would be so hurtful to her.

What stage is your Mom in, presently? If you need any more help, just ask...I've been through it all...

Blessings
Linda


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RE: Mom's Alzeimers assessment

Linda,
Just from the research I've done, I believe mom is in Stage 5 of the Alzheimer's staging (1 to 7). She was "diagnosed" with Alz/-dementia two year's ago...at that time, she had an MRI, blood tests and a full psych exam by a pscych dr who specializes in dementia and Alz...after that evaluation, she diagnosed her at moderate stage. It was then that she was placed on Aricept, so she's been on Aricept for two years and the combination of Aricept and Namenda for about 1 1/2 years. You said your mom was fine...just curious...what do you mean by fine? I guess I'm confused because you said she was on Aricept...
At this point, my mom does very little for herself. Probably easier to tell you what she can do rather than what she cannot. She gets out of bed herself, washes up and dresses (I have everything out for her in the bathroom...laid out exactly where she wants it to be). She goes to the bathroom herself and so far is continent - she's had a couple of accidents, but I think that's all they were, just accidents. She is able to swallow her medication and eat on her own (her meals are prepared for her and she is served and her pills are given to her). I've notice over the past few weeks she has a tough time using a knife and has at times resorted to using her fingers. I do help her to undress at night because she is SO TIRED and help her to bed. Walking is a problem because her balance is so bad; she has a walker to use around the house but she goes from wanting to use it to not wanting to even see it ("it makes me feel like an old lady!"). She is able to communicate, but not long conversations..just short thoughts...
I think what I find the most difficult about caregiving is not taking care of Mom, but feeling that I'm all alone. My sisters are of little help and truth be told, my husband is not much of a help, although if you ask him, he thinks he is, so maybe it's a matter of perception, who knows. I find myself getting very depressed, but this comes and goes. What's been really bothering me lately is I just cannot understand why mom's friends and family have stopped calling and seeing her? I know it is very difficult to have a phone conversation with her; after all, she remembers nothing, but that doesn't mean they can't call and tell her about THEIR day...I don't know, maybe it's me...it's like everyone has written her off. I have thought about writing to her friends and somehow, very nicely, suggesting that they come by and have lunch with her or take her out to lunch or just come for a visit...I'd love some input on this...thanks, Mimi


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RE: Mom's Alzeimers assessment

Would it really help your mother to have visitors? Is she aware that friends no longer drop in? Sometimes people coming in and upsetting the usual routine can worry and tire the Alzheimer sufferer. I know it would make you feel better if more people seemed to notice what you are going through. But sometimes, the elderly just don't have what it takes to try and entertain someone like your mother. Maybe they don't like to be reminded that soon they may be exactly like her.


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RE: Mom's Alzeimers assessment

PeaBee,
No, I don't believe that mom realizes that her friends don't call very often or visit...she never asks about them. Once again, thanks for putting things in perspective.


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RE: Mom's Alzeimers assessment

Mimi, I know that sometimes I sound as if I am uncaring. I don't mean to be that way, it's just that often the best way to handle the AD or other dementia patient is to keep them on a routine and as quiet and untroubled as possible. It's so easy for them to get overly tired or upset. Some will like going outside on a nice day, but if they go into places they don't remember, they can get unusually confused. It's hard to decide what is best to do.


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RE: Mom's Alzeimers assessment

Mimi, I can understand how you feel because when my mother was in the nursing home with her brain tumor, my cousin rarely came to see her. They had been very close previously (talking on the phone all the time, occasionally having lunch), but it was like she just checked out when Mom got sick. And like an Alzheimer's patient, a brain tumor patient cannot communicate very well as the disease progresses. My cousin has two children that my mother adored, and in the early stages of her illness, she was always asking to see them. I had to practically beg my cousin to bring them over. If she had acknowledged that it was difficult for her to see my mother in this state, I might have felt a bit better but she just chose to ignore the situation. It has left a bitter taste in my mouth that is very hard to forget.

I think that a person can at least make an effort to reach out to a sick person, whether it is sending a card or calling the family member or stopping by for a brief visit. It is hurtful to feel as though you have no support. I totally empathize with you.


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RE: Mom's Alzeimers assessment

Mimi, your Mom seems to be at about the same level as my Uncle...although he is incontinent quite often and I have to get him into the shower, which is difficult to say the least. Some days he is very uncommunicative and what he does say makes no sense at all, and other days he makes perfect sense most of the time. I think that the level of social activity they had before the AD makes a difference. My uncle lived alone for 20 years before he had a stroke and the subsequent dementia, so his level of social interaction was not high to begin with...I can understand how you feel about no support from friends, but in my case it is MY friends that have somewhat backed away...I often think that he may become more social if he was in a LTC setting...perhaps not. I think I worry he may not be getting the interaction he NEEDS rather than the interaction that he WANTS...


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RE: Mom's Alzeimers assessment

PeaBee,
No you did not sound uncaring at all. I appreciate your's as well as everyone else's input. Believe me, I'm not looking for a pat on the back from family or friends. I was the one who stepped up to the plate knowing (to some degree) the responsibility I was taking on, so I'm not looking for family or friends to come by or call for my sake. As far as my mom, truthfully, she'd enjoy the visit I'm sure, but it would be forgotten in a heartbeat. What I just don't get is people knowing what she is going through and dealing with and they don't even take the time to pick up a phone to say hello to her, or tell her they are thinking of her and love her.
Patti, what you wrote makes a lot of sense about the amount of social activity they had before AD. My mom lived alone for many years; the last 15 was in assisted living. She really didn't mingle with a lot of the people in the building, but the friends I am referring to is a small group of 4 women that mom has known for over 40 years. Out of the four, one calls on a regular basis about every 2 to 3 weeks; the others don't call or write.
Laser, thanks for your input about family...this I don't think I'll ever understand. My two sisters pick up my mom two Sundays each from about 1p - 6 or 7p. One sister calls maybe once a week during the week; the other only calls on the Sunday she picks her up to confirm she's coming. What I am trying to get through my head, because I realize harboring anger is not healthy, is it is their loss. They are the ones losing out on the time spent with mom, now, while she can still have little conversations and while she can still hug me back and kiss me and tell me "I love you" when I tell her the same. I think I need to put this last thought on a piece of paper and write it in black marker in big bold letters and hang it in front of my face in my office so I can look at it all day and maybe then I can let go of some of this anger...have a good nite ladies...I'm going to do some very deep breathing!!! Be well, Mimi


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