Make certain you have important information and you cannot trust your loved one's memory.

After my mother was private pay in a nursing home for over 10 years, she ran out of money so I had to apply for Medicaid. My mother said she never had Social Security because she and my father only worked for the government and they had their own pension system. I had a terribly time getting her Medicaid because I first had to get her Social Security.

Today I checked the SSDI (Social Security Death Index) for my mother. She had a social Security Number issued in PA prior to 1951 but had my residence at the last known location. No one ever told me she already had a SS number.

I am new to this site. I stumbled onto it by accident but I learned much more.I have looked at outher sites for answers and for people who has gone through or going through problems like this. My sister and I have a mother who is going through Parkinsons and we know AD is also some how connected. Mom had this diease now for about 15 years. I believe that her stubornness has kept her going. But lately she has gotten worse and requires much more care giving that the two of us can really give, but we want to keep her in her own home as long as possible. It is nice to know that there are other people that are facing the same challenges and willing to share helpful information. Thank you.

Just read the entries on this thread. Most are spouses of people with AD. Loved the suggestion of "I'm really feeling like driving today"... if you can make it work.

Best, Richard

Dear StillBill -

Do not quote me but about 1/3 of people with Parkinsons also get dementia.

 My issue was when I went throught this 1970-2000, there was little known about dementia.

There are many forms of dementia. When a drug  company came out with some thing for ALS there was suddenly all this interest.

There are many forms of dementia. Strokes, heart attacks, etc. and esp. complications from heart by-passes.

After 8 years of my husband having Alzheimer's, I just learned that they don't think he ever had that form.  They think now that he has Lewybody.  This is second only to Alzheimer's.  The meds are the same, but the symtoms are quite different.  The decline is much more physical, similar to Parkinson's and the memory traits are different.  He can remember current events quite well for example.  Until two weeks ago he couldn't carry on a conversation for lack of word skills, he couldn't read, he couldn't walk up straight and tall.  Now after a major incident where he couldn't move from the waist down, at last resort they decided to try a lumbar puncture.  He didn't have hardly any fluid to drain which surprised them.  They expected no real improvement.  Yet he is now talking in full sentences, reading some words, and walking tall.  He is having therapy 3 times a day.  , 7 days a week in a skilled nursing facility.  No one can tell me why this is happening or how long it might last.  Our family has just decided to enjoy this gift/miracle we have been given for as long as it lasts.  It is truly amazing.

Joy G icannews@comcast.net

Dear Joy,

I am so happy for you and your family. I pray the improvement will last forever. 

Medicine is not perfect, that is why they call it 'practicing.'

Dear Friends,

My father-in-law is fading and I suspect the end is near. He now cannot swallow well which is one reason ALS kills.

Imagine my surprise when my sister-in-law sent an email to extended family and ALS was not mentioned. They made up this story about his health which did not include ALS.This family has always been less than honest. My husband's uncle had MS but no, 'he had a bad shot.'  Oddly enough another uncle was a surgeon.

I am saddened that over the decades they are still dishonest. When I go to the funeral we will all have to lie. It is not my family so I do not feel I have a vote.

I told my husband this does a diservice to all people with ALS and the families who love them.

I am so sorry you will have to lie.  I had a similar experience with my husbands sister years ago.  It was quite obvious that something was terribly wrong and probably Alzheimer's, but no one would admit it or even get her to a doctor.  Then the doctor, without any testing, said it was just senior moments.  Have visiting with her for two weeks, I couldn't keep my mouth shut.  She and two of her daughters even worked at the hospital.  So I insisted that she be tested and even mentioned that it could be a brain tumor.  A month went by with no comment.  Finally she called and said she had been throughly checked out and it was Alzheimer's.  The sad part is that if she had not been honest my own husband would not have been diagnosed early.  Because she was honest and we started meds early he has had 8 fairly good years.  But can you say anything ... no.  I feel sorry you have to lie for all of the children and grandchildren who might need honesty in the future..

Hi Cherry Pie,

                     I am just wondering if you know that at the end AD and FTD, and ALS all lose the swallowing reflex and other control's of bodily funtions as well . So many of the Demenia's are also missed diagnosed because symptoms are so simular and cross over . Good luck with the family dynamics. I know how tough they can be Dealing with my husband of 60 with FTD--Frontal Temporal Lobe Dementia .  Love Torn

Hi Cherry Pie,

                     I am just wondering if you know that at the end AD and FTD, and ALS all lose the swallowing reflex and other control's of bodily funtions as well . So many of the Demenia's are also missed diagnosed because symptoms are so simular and cross over . Good luck with the family dynamics. I know how tough they can be Dealing with my husband of 60 with FTD--Frontal Temporal Lobe Dementia .  Love Torn

Dear Torn,

Yes, I know about the gag reflex. My husband and his two sisters are also very aware of it. That is why they made up the story that he had a small stroke and that is why he cannot swallow. I didn't realize until recently that only the children knew about the ALS.

I have a dear high school friend who has Parkinsons. She had the symptoms in her 40s but they didn't diagnose her for years. The medicine does help. She told me that Michael J. Fox being a spokesman for Parkinsons was the best thing that ever happened to her. She said after he became a spokesman when people commented to her about her shaking, when she said she had Parkinsons people knew - oh, that is a terrible disease Michael J. Fox has. She said it made having the disase and resulting pain and embarrassment more bearable. Her mind is fine.

This family is just nuts. I am embarrassed by them.

Thank you for the words of kindness. I am not flying up this weekend but my daughter is joining her father. I wonder how soon the funeral will be.

Hello, I'm new to this so bear with me. My husband has been diagnosed with Alzheimers at 57 years of age. I can't believe this is happening to him but I know it could be worse. You never really know what life has in store for you. Right now, he seems happy but a little scared of the future. We still have fun together and try to laugh a lot. Sometimes I feel kind of alone because I can't really discuss things with him anymore. We recently moved to be closer to his parents and that has been difficult - we don't have much of a support group. It's especially hard for him because he loves people. I would like some suggestions for things to occupy him as I still work full time and I always feel like I'm leaving him with nothing to do when I go to work.
 

What are his interests?  What has he always been interested in?  Start right there.  My husband loves humor and family.  I got him DVD's of Red Skelton, Johnny Carson, etc.  He loves music so we have the music channel on our TV.  I had him start working on photo albums.  I kept them small, just 4/6.  We sorted them my family,  friends, fun, vacations, etc.  After 8 years he still loves to look through them.  Can he still use a golf club?  Have him practice his putting.  My husband played singles tennis with a pro up until last June.  Does he love to garden?  Had him work on house plants, repot pots for the patio, or start a garden.  Remember none of these things as to be perfect, just fun!

Get the book Learning to Speak Alzheimer's.  It is a wonderful resource.  And remember you can still just talk to him and discuss things with him as you always have.  He might not understand it all but the love in your voice with be enough for him.  Keep in touch.  Joy

Good ideas Joy.

I can only add reading, cooking and maybe a pet. A dog is good company and will help get him to take walks etc.

The hardest thing about hobbies is that it has to be something he wants to do. 

There are community centers, churches and all sorts of volunteer work. It really depends on what he is willing and able to try.

We are all rooting for you,

Cherry

Dear Kaye,

I realize you are concerned about your husband but you also must be concerned about yourself. "Never start a routine you cannot keep."

As gently as possible try to get your husband to help out around the house. Anything he can do to help you will give you more quality time together. Working full time, taking care of the house and worrying about him is doing to take its toll on you.

Soup and a sandwich for dinner is great.  Some help with the laundry. You get the idea. Being appreciative for his help will make him feel better and also help you mentally and physically.

I have seen so many caretakers just 'burn out.'  You must take care of yourself.

Currently there are support groups, good books, etc. Use them and do not feel guilty. You did not cause this problem. You can only do so much.

Take care,

Cherry

Thanks Cherry and Joy for the posts.  They were very helpful.  Jerry does like to garden although he has a lot of trouble focusing these days.  But as you said, it is for fun, not to be perfect.  He is no longer able to cook or read.  He used to read all the time, but now he says the pages are like gray matter with no meaning for him.  He has lost the ability to do so much.  We have a dog (Maltese) and the three of us take walks together.  Jerry went by himself the other day (with the dog) and when I went looking for them he was "heading home" but in the wrong direction.   So far, we are managing fairly well but I sometimes wonder what the future will hold.  Joy, I really like the photo album idea - I'm going to start on that tomorrow.  I think he will enjoy that.  Thanks again for sharing your thoughts and ideas.  You both seem like strong positive people and I can appreciate that as that is what I am striving for these days.