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  • 5 Years after Diagnosis - Update

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    Old 03-06-2008, 04:32 PM   #1
    Beginning
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    5 Years after Diagnosis - Update

    When my DH was diagnosed with early-onset AD at age 58 (non-drinker, non-smoker, who exercised regularly and ate healthy foods -- no family history), I desperately wanted answers about the future. I've posted an annual update since that time, so that our story could tell others how the illness might progress (even though everyone's path can be different.)

    When DH was diagnosed, I felt that it was a death sentence and that our life was over. This was reinforced when he was required to stop working immediately, the neurologist reported his diagnosis to our State DOT and his license was revoked, and we had to work through numerous legal documents (living will, Testamentary Will, Power of Attorney, Social Security forms, beneficiary forms, titles to property, etc.).

    I thought I also had a few reasons to hope. DH was in a fairly early stage, and was functioning ok except for some speech and minor memory problems. This Board had a poster at the time, who was diagnosed with early onset AD about 8-years previously. Her postings had typos but otherwise were still well-written. She stopped posting about 3-years ago.

    We are now entering year 6 after his diagnosis. DH has had another large deterioration this year, and his MMSE score is now less than 6. This drop was larger than the 2-3 point drop that I had been told to expect each year, but I should flag that DH is not taking medications. He went off Reminyl and Namenda last year, for several reasons.

    I'm told it's unusual that DH still knows that he has AD. DH dresses himself, if his clothes are given to him. Otherwise, he might wear a summer shirt in the winter or could put on my clothes. There are some indications that he is starting to need to be reminded to use the rest room. I've been told to keep track of his bathroom schedule, so that I can remind him to use the bathroom at the same times. By helping him to follow his body's usual schedule, I've been told that he can be continent longer. DH shaves with an electric shaver, but misses spots. He can still tie shoelaces!

    DH is still able to speak, although he is becoming incoherent. It's a guessing game sometime to figure out what he wants to say. For ex., he told me that the dog made a mess like the cats make. It turned out he was trying to tell me that the dog had an accident in the dog-coop, which he equated to a cat's litterbox. On the other hand, he has a lot to say about the candidates for President and seems to enjoy watching the news on tv.

    He is no longer able to be alone during the day when I work. (He was probably alone longer than he should have been, since he seemed to function ok until I got last years' tests and realized how much he had been covering up.) He is in a day care program, and has adjusted very well to it. The day care workers are experts at keeping their charges busy, fed and happy, and I notice he sleeps particularly well on day care days.

    He no longer carries a wallet. We've replaced the good watch he wore every day of his life with a cheap digital watch. He will look at it, but can't tell time anymore. He can't use money, the computer, a television remote, kitchen appliances or a phone. He likes going to movies, where he promptly falls asleep. His table manners are becoming childlike, with slurping and open-mouth chewing. He is very cheerful most of the time and smiles or laughs a lot (even when there's no apparent reason.) Sometimes he will nod and laugh inappropriately in response to things that are said to him, which shows that he really isn't following conversations.

    It seems like just when you think you can handle the disease, it throws you another curve ball. A few days ago, for ex., he tried to open his car door while the car was coming to a stop. Now I know that he might do this, and will be using child locks. Last week this wouldn't have occurred to me. He has not wandered at all, or shown signs of sundowning. He sleeps 9-10 hours each night.

    I've been told that I should start looking at NHs and that his life expectancy might be another five years, but that he may be able to be home for another year or two (or longer, with more in-home assistance or nursing or depending on the level of personal care we are going to be able to provide). I still find that doctors and AD experts are unwilling to provide the forecasts that I want so badly, since each patient is so different.

    I'm starting to think about whether or not I will be able to handle incontinence, and if that's going to be the NH breaking-point for our family. Our kids (1 in high school, 2 in college) have discussed this too, and think that the NH stage might be when he doesn't know us anymore. While I've tried to keep life as normal as possible for our kids, they've grown up with this disease and their memories of their father will be affected by his AD. On the positive side, our kids have developed into very focused, caring individuals who are extremely motivated academically in health care fields, and who have volunteered hundreds of hours at nursing homes and hospitals. If it were not for their father's illness, I suspect they would be very different people.

    For every family like mine that is just handling the disease day-to-day, this Board is full of families that have much more dramatic problems with their loved ones. I don't know if the information I'm providing will help anyone at the beginning of this path, but I'm hoping it will show another face of the disease.

    Last edited by Beginning; 03-06-2008 at 04:35 PM.

     
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    Old 03-06-2008, 05:01 PM   #2
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    Re: 5 Years after Diagnosis - Update

    Thank you for your post Beginning. You are an amazing lady with a positive story to tell. We need that here. I am sorry that DH has deteriorated so much this year. I truly believe when we are with somebody day to day we don't notice the little changes that accumulate during the year to become big changes. You deal so well with all that is in front of you. I just hope I can do as well. Your children take their strength and lead from you. Children learn what they live and evidently you have made your home a nurturing atmosphere and your children have thrived. DH's illness has become a positive instead of a negative. I applaude you and have much respect for you. Thank you again the post.....

    I will keep you all in my thoughts and prayers.....

    Love, deb

     
    Old 03-06-2008, 05:27 PM   #3
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    Re: 5 Years after Diagnosis - Update

    I applaud you, Beginning, for being the loving and caring person you are. Many would have handled the situation very much less well. You have shown amazing understanding and helpfulness. Isn't it great when the person is cheerful? I had that MOST of the time with my mother - in contrast to the many scary stories abut AD victims who yelled, cursed, hit, spat or worse.

    I pray you will maintain your dignity and beautiful attitude for the remainder of your long journey, and continue to make the right decsions. I agree that incontinence could be the signal that NH time has come, and forgetting who you are and who the children are would also be a good time for the change. With his naturally cheerful personality, he will adjust well to a good NH with caring personnel.

    Your story shows people that although it is a terrible disease, it does not mean the end of life as you knew it. Life goes on, even with dementia. Thank you.

    Love,

    Martha

    Last edited by Martha H; 03-06-2008 at 05:28 PM.

     
    Old 03-06-2008, 09:07 PM   #4
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    Re: 5 Years after Diagnosis - Update

    Beginning,

    All I can say is you have done and will continue to a tremendous job!
    I am new here, and your post about your DH is very insightful to me.

    We go for a 2nd opinion later this month for mom. I hope the DR will be open about her scores.

    I will keep you and your DH in my thoughts and prayers...

    ~Looking out 4 Mom

    Last edited by Lookingout4Mom; 03-06-2008 at 09:08 PM.

     
    Old 03-07-2008, 10:40 AM   #5
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    Re: 5 Years after Diagnosis - Update

    Beginning,

    I very much appreciate your posting. I know everyone is different but every story is a learning tool for those of us here.

    Your a wonderful wife and your DH sounds like a sweetie. My Grandfather was always very sweet and so easy to please. My Grandma on the other hand could be a real handful. They both had this terrible disease.
    My prayers and thoughts are with you and your family.
    Chris

     
    Old 03-07-2008, 12:53 PM   #6
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    Re: 5 Years after Diagnosis - Update

    Thank you for your post and I hope you will receive blessings each day for just what you all need. I once read something that stuck: How do you eat an elephant? One bite at a time. I try to take it one day at a time and not stress too much over what might happen in the future. It is hard to do when faced with dementia. Question for you: how did you go about telling your kids about your DH and when did you tell them? Also, how did your husband act right at first to make you think he had something wrong? How did they figure it out? Lots of questions, but I appreciate any answers you may have for me. Thanks a lot! C

     
    Old 03-08-2008, 01:32 AM   #7
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    Re: 5 Years after Diagnosis - Update

    Thank you, everyone. CYT -- My first notice that something was wrong was when he looked directly at something and was unable to say its name. I said he needed to have a physical and he agreed. Later I found out that he had been worried since he was finding it hard to speak on calls at work because he couldn't think of words. I thought he might be having mini-strokes. The internist referred him to a neurologist, who made the initial diagnosis. He had a CAT scan, MRIs, blood workups, and memory tests galore. We tried another neurologist and then got a third workup from a national AD research center before finally accepting the diagnosis. His initial symptoms were speech-related, but it wasn't long before memory loss and impairment of judgment became evident too. For ex., he often would misplace items or put them away in odd places and he ran up large charges on credit cards (ordering me two nonreturnable custom fur coats, for ex., as a "surprise").

    As I look back, I see that there were signs of the disease for a year or two before his speech had reached the point that we both thought he needed to see a doctor. His closet and office became extraordinarily cluttered, and he became very indecisive. He wrote himself more notes which contained odd spelling errors, and he was leaving family decisions to me. Each thing by itself didn't mean AD, but now I see they could have been early symptoms.

    I told our kids as soon as I was calmer. In the beginning, they didn't know much about the disease. I explained it to them as an illness that would progress, but that I thought it would progress over many years and that I was going to keep their lives from being turned upside down. I reassured them that they didn't have to deal with big changes. In particular, I told them that their lives weren't going to change - no changes to school, home, etc., and that Dad would be around for years.

    Our kids each had classmates who had lost parents through death, and who had parents who were fighting cancer. I don't remember anything of this kind when I was in school, but its amazing how much our kids know about life these days. I also offered to let them come to doctor visits as a family over the next years, if they wanted.

    I did ask them not to talk about the diagnosis at school, since it was still a private family matter. I called their Guidance Counselors and told them confidentially, but asked that their teachers NOT be informed. If there was any change at school, I wanted the counselors to alert me. On the other hand, I didn't want their teachers treating them differently or interpreting everything in the context of family trauma.

    Two teachers did find out from the Counselor. One had a Mother in NH with late-stage AD, and was very helpful to one kid by just offering to talk whenever the kid wanted. The other one treated the kid like DH had already died, to the point that other kids wondered why the teacher's behavior had changed so much.

    The guidance counselor helped me get a driving pass for the only kid who had a license at that point, so that this kid could drive to school if needed.

    As we went along, of course, changes did occur like Dad stopping work and being unable to drive them to school events - but they dealt with each change as it occurred, instead of having the whole package dumped on them at the same time as the diagnosis. I did suggest they watch a show on AD that came out the year of DH's diagnosis, which I think now was a mistake. It showed the worst of the disease and scared them. The show would have been useful for them later, not the first year.

    Telling the kids wasn't as hard as I feared. Since the AD patient is still around and the changes are progressive, they quickly realize that panic over losing a parent isn't necessary and that the family will have a long time to adjust.

    Last edited by Beginning; 03-08-2008 at 01:33 AM.

     
    Old 03-09-2008, 12:22 PM   #8
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    Re: 5 Years after Diagnosis - Update

    Thank you so much for the info and I wish you all the best in the coming years. C

     
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