Results from the neurologist

[rummy]

Hi Freinds,
We took Mom for her six month check at the neurologist. She scored a 16 on her MMSE. He said her comprehension was still ok even though it looks like everything else is on the slide down. He also added that when the AD patient looses their comprehension, the disease takes a fast dive and that is when you start looking at nursing homes. Another bit of info is that he said as soon as ADers go off of ARicept they will spiral downward and once that happens they do not come back up. He says to keep her on the medication indefinitely because of this. She is also on Namenda.
I talked to him in length about AD being genetic. He says pretty much all disease is genetic but there is no reason to think that because a parent has it that the children will too. Unless it is early onset AD, that is entirely different and should be watched by all family members.
I just wanted to pass on the information I received today while it is fresh. Perhaps someone else can benefit from it.
Take care,
Rummy (Debbie)

 

[connie]

Dear Debbie, thanks for the info. I think that coming off any of the medications has the same effect i.e. sharp decline.......
don't want to think about early onset implications..... this would impact on Lionel's children.....they have had enough trouble coming to terms with this desease as it is.Love Connie.

 

[Kathleen]

Thanks for that I have posted a thread as my mum has just been taken off galantamine by her psychiatrist.

I just wish we had been told in advance that he was going to visit her,as has happened every other visit, that way at least one of us would have been there to ask the questions that keep buzzing round in our heads. Have spoken to him on the phone but it is not the same really.

I can cope with most things if I know what to expect and I have read past posts and info too, so, although normally an optimist, I fully expect mum to go into a faster than "normal" decline from now on.

It sounds a silly thing to think, but I often wonder if it would be easier to deal with this awful disease if there was a timescale. It is the unpredictable nature of it that makes everything harder i.e. a good few days and we are all optimistic and making plans to take them out or whatever, then you hit a bad patch and are back into the negative mood again.

Forgive me for going on, I am just so fed up today!

Kathleen

 

[rummy]

Dear Debbie, thanks for the info. I think that coming off any of the medications has the same effect i.e. sharp decline.......
don't want to think about early onset implications..... this would impact on Lionel's children.....they have had enough trouble coming to terms with this desease as it is.Love Connie.

Hi Connie,
I'm sorry if my writing about the genetic factor with early onsite caused any fears for you and your family. I'm sure your children would be upset if they thought their chances of getting it is increased. You know my information is that of our nerologist and was painted with a very broad brush. I think more than anything he as trying to eleviate my fears of getting it ! My grandmother had it and now my Mom, ( both beginning at age 72 ) so it is reasonable to think I could be next ! ( I've apologized to my daughter in advance )
Take care
Debbie

 

[rummy]

Thanks for that I have posted a thread as my mum has just been taken off galantamine by her psychiatrist.

I just wish we had been told in advance that he was going to visit her,as has happened every other visit, that way at least one of us would have been there to ask the questions that keep buzzing round in our heads. Have spoken to him on the phone but it is not the same really.

I can cope with most things if I know what to expect and I have read past posts and info too, so, although normally an optimist, I fully expect mum to go into a faster than "normal" decline from now on.

It sounds a silly thing to think, but I often wonder if it would be easier to deal with this awful disease if there was a timescale. It is the unpredictable nature of it that makes everything harder i.e. a good few days and we are all optimistic and making plans to take them out or whatever, then you hit a bad patch and are back into the negative mood again.

Forgive me for going on, I am just so fed up today!

Kathleen

HI Kathleen,
I so agree, it is the not knowing what is ahead and how long the progression of AD will take that makes planning so difficult ! I don't know if I need to be looking at nursing homes or not. Many say I should but if its too early the information I gather would be out of date later. When do you get help to come into the home, when do you step in and be more parental, when do you assert yourself in so many ways. I just wish there was a rule book but realize every case is different. We shall just muddle along in this all together
Debbie (rummy)

 

[Brucie]

The lack of being able to plan tends to obscure the future completely. I've been in a fog for the past ten years, and it could go on for another ten years - or more.

The thought of Jan being in a gradually deteriorating state for ten more years is just awful. Sounds selfish, but while I want to visit her as often as I can, I would also like some relief from the jail I find myself in.

I guess that, as with eating an elephant - you do it a bite at a time unless you have an enormous mouth - you just have to take things Norman's way, day by day.

...but there's no time off for good behaviour, and even murderers get that.....

 

[rummy]

The lack of being able to plan tends to obscure the future completely. I've been in a fog for the past ten years, and it could go on for another ten years - or more.

The thought of Jan being in a gradually deteriorating state for ten more years is just awful. Sounds selfish, but while I want to visit her as often as I can, I would also like some relief from the jail I find myself in.

I guess that, as with eating an elephant - you do it a bite at a time unless you have an enormous mouth - you just have to take things Norman's way, day by day.

...but there's no time off for good behaviour, and even murderers get that.....

Brucie,
Maybe we're earning our wings. My Dad died at age 40 of colon cancer when I was just 16. That was really bad too, just a different bad. I think this is worse. I do think we have to still live our lives and do what makes us happy even though we have a loved one with this disease. You must give yourself that time off for good behavior don't you think? Take a holiday, go to a museum, or a movie. I know iif they had a moment of lucidity they would say " keep on living for the two of us" .

 

[noodle31]

hi all

how rapid is rapid??

Dad saw his angina consultant in jauary....til then he had moments of confusion but generally was ok...some hallucinations which his gp continually put down to dehydration or constipation

in january the angina consultant expressed concerns that dad shuffled when he walked.

in early april dad woke up one day thinking he was in the army having to get to london, he didnt know my mum.

now here we are just 4 months down the line, lewy bodies and parkinsons have been diagnosed.

he cannot walk
he is incontinent at times
his speech is pretty much indecipherable (sp?)
he doesnt recognize us more than he does so
he cannot feed himself
simple things such as blowing his nose is a major acheivment

4 months ago all of the above were simple everyday things

is that normal rapid??

i wish we could see ahead

love to all

Jane

 

[Norman]

Rummy
you are quite right we do need time off to enjoy?our pursuits.
When it is a partner living together it is not that easy,we are dependent on others allowing us the time off.
I may get a little family help,but that is rare.
At the moment I have 6 hours a week provided through SS,I have asked for more and now I wait for the paperwork and the meetings and the budget situation to progress.
Then I may be allowed some more time to myself.
I have served 7 years so far,how much longer? How long is a piece of string?
Why do we struggle on? I think it's called love
Norman

 

[rummy]

Rummy
you are quite right we do need time off to enjoy?our pursuits.
When it is a partner living together it is not that easy,we are dependent on others allowing us the time off.
I may get a little family help,but that is rare.
At the moment I have 6 hours a week provided through SS,I have asked for more and now I wait for the paperwork and the meetings and the budget situation to progress.
Then I may be allowed some more time to myself.
I have served 7 years so far,how much longer? How long is a piece of string?
Why do we struggle on? I think it's called love
Norman

I dont know why I was thinking your wife was in a home. Of course it is more difficult in your situation, my Dad is in the same boat but I go over every day to give him some relief. I have tried to get him to go see his other daughters and leave Mom with us but he won't do it. He isn't healthy himself and I know if he passes away, Mom will live with us and I will then be in you full time situation. It will be very challenging for sure. But you are right, it is all about love !!

 

[connie]

Yes it is all about love, but you have to love yourself as well, and try to make time for yourself. I know just how difficult it is as I care for Lionel at home.

I do get concerned sometimes that love can so quickly turn to resentment. We all know it shouln't, as our loved ones cannot help themselves, but we are all only human. Please try to take care of yourselves, you deserve it. Love to all, Connie

 

[Nell]

[
It sounds a silly thing to think, but I often wonder if it would be easier to deal with this awful disease if there was a timescale. It is the unpredictable nature of it that makes everything harder i.e. a good few days and we are all optimistic and making plans to take them out or whatever, then you hit a bad patch and are back into the negative mood again.

Dear Kathleen,

{{{{{{{{Kathleen}}}}}}}}}}} I was delighted that you said the above quote!! Sorry if my enthusiasm seems a bit over-the-top but I have often felt that a "use by" date would make life so much easier to cope with!! Altho' I think my situation is most fortunate compared with many others, I am certainly finding the whole thing a great strain on my health. A number of long term health problems I've coped with well in the past have recently become much more serious and I dread to think what will happen if I can't continue as I have been.

I don't mention my desire for a time-line or "use-by date" to others because they would think I was heartless and uncaring, but the WONDERFUL thing about this forum is that others understand and (hopefully) do not judge. If I could just work out what was coming next, I believe a lot of my stress would dissipate and this would improve my health . . . etc. etc.

Oh well, I feel MUCH better for reading your letter. Thanks so much!
Nell

 

[purchase]

Coming off medication

Hi Rummy

My mom was taken off Aricept at the beginning of the year. Becuase one of moms main symptoms is crying the consultant felt that by taking her off Aricept she would deteriorate very fast and forget about crying. This hasn't happened. She is declining but very slowly. Her crying is still very bad and she has had to go into nursing care. I hope your mom doesn't deteriorate quickkly.

Jacky

 

[rummy]

Jacky,
I'm so sorry about your Mom. There just are no easy answers and I think every patient is so different that there are no set rules for everyone. Who knows what your Mom could be reliving in her mind ! Bless her heart, I hope she will become more at ease with time.
Take care,
Debbie