My Mother was diagnosed with Early Onset Alzheimer's last year. My Father is the primary caregiver, and I am worried that he is taking on much more than he can handle. My Mother currently goes to a Day Care 5 days a week, but she had a seizure last Sunday and her memory and ability to walk and go up and down stairs has decreased immensely since then. I would really love to know my Father's options, so he doesn't have to do this all on his own. I can help out some but I am 6 months pregnant! This whole situation is very confusing and heartbreaking. My Mother is 55 and my father is 54. My brother still lives at home and can help, but all other family members live out of town. I am just looking for others in the same situation and I am also looking for help for my Father.

Thanks.

Please be aware if you are caring for a relative with onset Alzheimers that there is a commonly used drug called ARICEPT that is used to "treat" the progression of the disease. What they dont tell you is that one of the side effects if involuntary STARVATION.

A large number of people on this medication have starved themselves to death because they lose the desire to eat and everything tastes horrible to them.

My mother died June 8th of starvation, I found out about this side effect after she died.

If someone you know is refusing to eat PLEASE check their medications and see if they are taking this heinous medication -

Sorry to change subjects but see my update on my original thread "Seeking Under 60 EO Cargivers."

Billy G

Hi Eleanor...
So glad Jim is regaining his ability to communicate. I can only imagine how good that must make you feel. Here's hoping you both can enjoy a relaxing Father's Day this weekend.

I also want to send my continued wishes for a speedy recovery from your partial mastectomy and I hope your oncologist has good news for you. Please, please keep us in touch. There are many of us who think of you often.



Hello Chris...
Way up there in cool Minnesota. I know what you mean about missing in-depth conversations even though Alan is at a much different place than Roger is. In our case, it's more like avoiding emotional "bombs" but I sense the loneliness is quite similar. The computer and the friendships we find there does help a lot, doesn't it?

When you spoke of your projects, it made me remember the upcoming wedding. How are those plans going? Are you getting excited about getting away for a few days yet? What else are you up to these days... we're trying to build a fence around our pool equipment. Oh what fun.



Hey Billy...
Is the baby here yet? We're expecting all the specifics... length, weight, sex... that type of thing. I'm also hoping you and Ronni may yet be surprised by your daughter and her desire to share this baby with both of you. This may be especially true since she was so close to Ronni before the "demon" came into your lives. I pray for that.

How's your golf game going? Any birdies? Maybe we can fit in a quick nine at Sonoma Ranch the next time you come down this way.



~~~~~~ Waving to my buddies, one and all...hoping you're having a great summer day! ~~~~~~

It's good that she is able to go to day care 5 days a week,is that all day or 1/2 days?The days she's in day care he needs to utilize his time doing what he wants,resting,shopping,or going for a drive to relax.This is what most caregivers do.Does he have a computer? That's another way to relax,getting away.He can chat with friends,or make new friends online,play games,cards,domino,whatever...............

Good Morning from damp Toronto:

Well I see we are at the "C" again.

Visited Jim yesterday from 2.30PM -5.45PM.
we had a good visit went for a walk and sat in Cafeteria and Jim had his treat a Mince Tart & 1 1/2 cups of coffee. The Cafeteria is closed but there usually is some coffee or hot water left in the urn. Jim is very thin so he needs the extra calories. He eats his meals very well.

Jim was in good form yesterday from winking at the Aids to swearing for some reason or another , talking a blue streak and smiling. Jim,s eyes yesterday were shinning. I can tell how Jim is most times by his eyes. When he gets that far away sad look I know he is feeling sadness.
Before Memantim Jim talked but just a lot of words, now he is talking in short sentences. Yesterday he said' "You know my Brother Arthur was in the Air Force", he tried to get out that he was a Upper Air Gunner in a Lancaster Plane but it got jumbled. When Jim used to metion his brother that is how he would talk. It was great to see that coming back,,.

I left Jim walking down the Hallway peaking in all the Rooms. I do not tell Jim I am going because [ since Memantime He says " Wait for me" So I just watch him and go.

My sisters picked me up and we went to a Thai yesterday for supper. I said to them " You can see that Jim is Happy here " Yes he is they said. I am so glad he is because that makes it easier for me to see Jim there. Hoping to bring Jim home this weekend. I am not sure yet wether it will be Sat, for an over nite and then Fathers Day.

I will be seeing the Oncologist at 11AM, for the resultsof the tests I had last week. Then maybe she will set up for the Radiation Treatments. Just in case you hadn,t read I had a PartialMastectomy Auxillary disection [ took out 14 Lymph nodes] 6 weeks ago, it was Cancer. So I have to have Radiation. Never a dull moment in my life.

. You said I must have been a progressive thinker [ Hmm what does that mean] I k now I was off doing somethin all the time . I remember when I was 11 yrs old I used to go downtown on the Street Car and go to a big
dept. Store and buy Material for my Mom or anything else my Mom had on the list [7 children in the family , 5 girls] , my Mom made all our clothes]
. When I was 18 I joined the Canadian Air Force but never got out of Canada. I guess you could call me a progressive thinker.

I could go on forever . Chris I know what you mean about conversation. The "C" is my conversation. It is good now when Jim talks [ in whatever way ]. I know sometimes I could go for days now and not speak[ only to the radio or TV.] Then someone would phone and my voice was hoarse. I often have water by the phone.

Must go and get ready [ do the dishes etc] , my sister is picking up at 10.30. I do not drive.

Take care
Eleanor
[ still a Caregiver for Jim[ we will be married 57 yrs in Nov.

Good morning from Minnesota...

Thank you for your message, Eleanor. Yes, I truly enjoy my morning computer time. I'm probably substituting the morning conversations that Roger and I used to enjoy for morning computer time. I seem to crave conversation, and since my husband is no longer able to provide conversation with any depth, I've learned to search for stimulation in other places. I'm sure that applies to most of us.

Eleanor, I want to say as so many others have said, how much I admire you. You are a role model to all of us, not only in your role as a caregiver to Jim, but also your ability to use the computer. Most people in your age group would never think of using the computer, let alone a message board. You must have been a progressive thinker throughout your entire life!

Well, I'm off to another day of projects. I hope that you have a good day, too!

Love, Chris

Good morning from a sunny Toronto:

Chris :
I remember the early Morning "C" time when Jim was home [ Jim has been in NH since Dec.29/03 ]I used to get Jim up at 9AM on the mornings he didn,t go to Day CEntre [ Day Centre days I would get Jim up at 7.45AM] So usually I got on the "C" before I got Jim upor after I got Jim to bed at 8.30PM. You learn that you have to fit youtr times into hte quiet times with LO.

Billy G:
I am glad your son is able to accept his Mom Illness. It makes it so much better when they understand. I know our Children [3] have all accepted their Dads Illness and are very much at ease when they visit him in the NH. Especially since he has started taking Memantine [Namanda] they see the difference and are so Happy. Last night when Daughter Sharon & Gdaughter Shannon visited JIm , Sharon said He saw me coming down the Hall and called out her name. Things like that make your Heart skip a beat , especially when they had forgotten and now with the Memantime little things come back.

I hope your daughter will be able to accept her Mom's

Must go take care and keep posting.

Eleanor

Good morning Billy,

I'm up early this morning and taking advantage of the quietness by reading the message board. My heart goes out to you as you struggle with the sadness of your daughter not sharing in the journey of her mother's illness. We have two grown children and acceptance of their father's illness was not easy. Our son who lives further away and has been busy working as a CPA and also attending law school found it much easier to bury himself in work and study than to partner with his family. After we went to Mayo and we actually had a diagnosis, then he hit rock bottom and was able to accept the situation. He has been simply wonderful since then, so information was key.

Our daughter lives two hours away from us, but only four miles or so from her in-laws, so that family sees far more of our grandson. This spring I began feeling like our daughter was kind of throwing us out with the dishwater and distancing herself from us. Although I'm usually the type that bends over backward to have harmony with our children, I actually had words with our daughter and things have been much better since then. I think it's okay to let our children know that we have needs, too.

On Monday we went to Brainerd for Roger's VA appointment and it was an absolute day from hell. I'm learning that even fun outings are becoming stressful for him and he's more comfortable in familiar surroundings. For someone who always wanted to be on the go, this seems so totally out of character, but I guess that's the name of the game.

Is it possible for you to find some type of respite care for Ronni to attend so you can have a bit longer break than the volunteers are able to provide? Although I don't overdo the use of RC because of budget constraints, it gives me great peace of mind knowing a break is possible.

Hang in there, Billy.

Hugs, Chris

Smurf,

Bless you sweetheart for trying to help out your dad. This also goes for other sons and daughters doing the same. My wife is 55 and I am 60. I am her full-time caregiver and have very little time for myself. So far I have not found any physical help other than volunteers through our church. They come take her to get her nails done, take her for hair appointments, movies and lunch on occassion. They also take her on Thursday evenings so I can go play some golf with friends. My son also lives with us but is going to school full time. He helps when he can by fixing our meals (he loves to cook and is studying to be a chef) and he will watch after his mom sometimes while I run errands. My daughter is also pregnant and due any minute. We seldom see her. Since her mother has become sick she doesn't come around much. It is very disheartening because they were so close before. She just works a few blocks down from where we live but can't seem to make it here to visit. Any other times she and her husband are to busy shopping or visiting with friends. She calls once in awhile and we talk. She tries to keep me updated on the progress with the baby. I feel really sad because I don't think we will get to see much of our first grandbaby. I can't change her but I do think God that we have our church family, our son and the friends I have made on this forum. Without these I do think I would loose my sanity.

All the suggestions you have read here are from people that know. I do strongly recommend that you get the book " The 36 hour Day." It will help you, your dad and anyone else in the family that wants to help out. Don't give up. Your dad needs all the help he can get and the biggist help is knowing that you are there for him and that you truly love him. Tell him that on Father's Day. Nothing could make him any happier than having his wife and partner back. That not being possible, he needs to know he has you.

Thank you so much,

Billy G.

Hi Carrie...

What type of Alz links are you looking for and what type of information specifically ???



,,,..,,,

Smurf, your mom is so young to be afflicted with this.There are others who are dealing with EOAD. Carrie, I went to your reccomended sight.Very informative and a good resource for everyone

My mother has been sufferring from Alzheimers for the past four years. Ive been by her side the whole time, from the times she eats her meals to the days she needs to bathe.

Looking at the posts below, i've noticed that there arent that many links posted in regard to Alzheimers. www.alzinfo.org has been quite helpful for me, on this rather harsh journey. hope it is of great help to you.

take care,
carrie

Smurf, I might also add that your father should consider joining us here in the EOAD spousal caregiver's meeting room (now for the month of March). We are mostly all spouses in about the same age bracket as your father. We have found that this online support 24/7 is absolutely the best thing to keep us going.

Take care of your own emotions too during this most stressful time. We all want that baby to have the best possible next few months and arrive bringing joy to everyone. You know, babies do that by their meer presence. Such gifts they are!

Please come here often, and do encourage your father to also. You've been given some good advice here already. Now you need to do some footwork and get things going. Good luck.

Dear Smurf:
You are so right, your father does need help and I say that most important thing is for him to have as full understanding of Alzheimer's as possible. With this disease understanding it is vital to effective coping and minimizing stress. The Internet is packed with information for you and your father. Check out my home page with some links at: http://hometown.aol.com/fkcassel4221914/myhomepage/index.html
Give special attention to the 10 Absolutes.
Keep faith and God bless.
Franklin

Seizure activity is something generally seen as the result of the disease in the later part of the disease. At this point she may become a lot more dificult to care for. She may go back to where she was in the disease prior to the seizure but she could also continue a down hill climb.

Alz. normal takes a steady rate of decline unless something else effects it like an infection, such as an UTI, a physical cause such as a stroke or seizure or an emotional cause such as stress, fear anxiety and depression. What have the Drs. said?

You may want to check out the local care facilities in her area. Many of them provide alternate care other than 24/7, mainly in the form of respite care. Perhaps you can contact the Alz. Assoc. in your area and they may also give you a list of alternate and supplemental care available in your area.

sugarlips has given you good advice. i will add a local nursing home also has a list of people that can help.

is your dad in good health? at his age he should be able to handle the situation. many here are in the same age bracket and with the exception of day care,handle everything mostly on there own.

there is in home health care. its cheeper if you find some one thats registered with a nursing home or hospital. the in home agencys tend to be expensive.

is your mom on one of the alzheimers drugs as they do help to hold the disease off for some time.

Smurf,

Welcome to the forum. I'm so sorry to hear about your Mom. Contact the Alzheimer's Assoc. They will be able to direct to the types of help availavle in your area. Also, the Area on Aging. It can be found in the blue pages of your phone book. Depending on your financial picture there is lots of help available. Another good source is calling the hospital and speak to a social worker. They always know where to find help. A good book to read is "The 36 Hour Day"
This gives you a good overview of what to expect.
Post again and let us know how things are going.

Vicki

[ March 12, 2002: Message edited by: Sugarlips ]