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Old 11-20-2006, 08:55 AM   #1
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Are there any other young people caring for alzhimers?

Hi, This is my first post on any support fourm; I'm 23 yars old and my dad has recently been diognosed with alzhimers, but has been displaying symptoms for a few years, he is only 62.

It has been very hard, I moved back home after completing a degree and had plans of moving away again and qualifying as a teacher, but in the mean time my dad went down hill and was diognosed.

At the moment I'm working part time on min. wage, whilst this gives me the time to help my mum wih doctors appointments (she has to stay working full time) this bringing me down and I am starting to feel trapped, not progressing with my ambition to become a teacher. I can see myself becoming reckless-drinking more and taking recreational drugs in my snippets of free time.

I wondered if there is anybody else around the same age who has any advice?

 
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Old 11-20-2006, 08:59 AM   #2
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Re: Are there any other young people caring for alzhimers?

My mom is 63 but I am older than you... I am 34. Do you and your mom have any plans to put your dad in to a nursing home? What about if he becomes a danger to himself and others?

 
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Old 11-20-2006, 11:22 AM   #3
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Re: Are there any other young people caring for alzhimers?

You definitely need to sit down with your Mom and talk about options, so you can get on with your life. Be strong and in control of going after your goals. It sounds as if you're just in reaction mode right now, and blaming the situation for some bad choices.

I'm a bossy know-it-all Mom, and one thing I'm absolutely sure of is that your Dad wouldn't want you giving up your life for him.

My husband is 62 and in mid-stage Alzheimers. I work really long hours to keep things going, and appreciate it very much when our kids help out. Our oldest is going to be 21, and our youngest is turning 15. I'm considering having a "babysitter" come in for a few hours to keep my husband company, fix him lunch, etc. so that our youngest doesn't have to come home from high school at age 15 to be a caregiver for an Alzheimers patient.

I do NOT want my older kids giving up their lives and college years for their Dad's care either. Yes, I do ask each of them to contribute a big chunk of their free time to helping the family. It's the morally right thing to do for a loved one, and I need the help. I get some of that self-pity/anger once in awhile when they'd rather be doing something else -- it's only natural. There are undercurrents of "Why do I have to do this? Why aren't my parents helping me like my friends' parents are! I should be having a great time at this age, not taking care of a seriously ill parent." Hey, I have some of the same feelings even though I'm in my 50s.

It's great that you're helping your parents, but ultimately you have to work together to make sure that you can still pursue your own life. Your Dad's illness could extend through many more years, and you don't want to find yourself at 30 looking back on wasted years. Figure out ways to reach your goals, and then talk to your Mom. There will be ups and downs, but it's not impossible to make some progress towards your own goals while dealing with this situation. You can be frustrated, or you can wake up and see each day as being full of "challenges and opportunities" waiting to be overcome. Make a timetable for yourself. Your Dad's illness isn't going to get better and perhaps your parents just need some help getting through the initial planning and shock period right now?

Yeah, I know I'm bossy. It's a trait that keeps our family going, although I know my kids hate it. You're certainly not alone, although not too many younger caregivers like my kids post here.

Last edited by Beginning; 11-20-2006 at 11:41 AM.

 
Old 12-10-2006, 05:50 PM   #4
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Re: Are there any other young people caring for alzhimers?

Im 26 and taking care of my 60 year old Mother! You arent alone......

 
Old 12-10-2006, 06:32 PM   #5
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Re: Are there any other young people caring for alzhimers?

These posts have struck a nerve. It's horrible to hear that so many people in their 60's are getting AD. And I hate to hear that young people have to be burdened down with this. It makes me think about my kids. I have been worried about my husband, he is almost 59 and is showing signs of memory loss and personality changes. We have ruled out other things but haven't had him tested for AD. Our kids are 16 and 18. I would hate it if they had to put their lives on hold to take care of my husband, or me for that matter. We've lived our lives and they haven't. I would just do everything in my power to keep that from happening. I would say give your parents your love and moral support, a break once in a while, but don't give up on your dreams and ambitions. I don't think any parent would want that for their children. The greatest blessing in my life is if my kids are happy and will have a fulfilled life. I know you want to be there for your parents like they were there for you, but that was their job. I wish you the best and hope you can get your life back and your dreams. Good luck and keep us posted. C

 
Old 12-11-2006, 02:52 AM   #6
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Re: Are there any other young people caring for alzhimers?

Hello everyone. I am older than the parents/spouses you have who are suffering from AD. I have children in their 20s and 30s.

If I ever get AD (my Mom has it) I want to be cared for in a nursing home or other facility. As early as possible! Before anyone feels they have to give up their job or move in with me. Before anyone is driven crazy by my irrational behavior, and starts to resent me and feel I am an immense burden. Before siblings begin to hate each other because one gets the whole burden while others deny the whole thing is really happening.

My children know that I feel this way.

I am now speaking on behalf of Dementia patients in any stage of life - we need help, professional help. We do not need our children giving up their own lives, strife and hate in the family, being embarrassed by our weird behaviors and thus losing all self respect.

I hate the expression "I will NEVER put my mother/dad/husband/granny away in a nursing home."

It is not away. Visiting hours are often all day, any day.

Think of this - if I get a heart attack, do I want my kids to try their best to take care of me at home, and avoid sending me to a hospital? Only to send me there anyway, far too late?

AD is a disease, not a character weakness. Get the person professional help and professional care. It doesn't matter if it costs all my remaining assetts.

Sometimes keeping the person at home is the worst possible thing you can do to them.

Please do not take this as a criticism if that is what you choose to do, it is only one 67 year old womans' opinion.

Love,

Martha

Last edited by Martha H; 12-11-2006 at 04:50 PM.

 
Old 12-11-2006, 03:02 PM   #7
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Re: Are there any other young people caring for alzhimers?

Martha --

Boy, did your posting hit home. As you know, my husband was diagnosed 4 years ago. I now feel some of that frustration and resentment you describe. We're at the point where DH can't figure out how to open a car door, answers the phone and then just walks away from the receiver, leaves the tv and all the lights on when he goes to bed, etc. It's bad now, but I know that it's going to get worse.

Instead of being happy that one of our kids is getting college acceptances, I'm panicking about how I'm going to pay for day care for him when I'll have 2 kids in college. Finding out that my husband wasn't honest with me during our marriage and knowing that I can't do anything about it doesn't help the situation. It's one thing when you're a caregiver for someone with no negative baggage, and it's another thing when there's already some resentment and old history bottled up.

There are days when I think that a diagnosis of terminal cancer would have been better than Alzheimers. I can't imagine doing this for another ten years, and then being destitute with broken health/broken family relationships as a result of caregiving...but that's the future I see.

For the original poster -- don't let this be you. There's no happy ending to this disease. Don't waste your 20s. I agree with Martha and CYT that your parents can't want you to sacrifice yourself to this awful disease.

Last edited by Beginning; 12-11-2006 at 03:04 PM.

 
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Old 12-11-2006, 05:17 PM   #8
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Re: Are there any other young people caring for alzhimers?

My dad is in the final stages. My sis has spent years trying to manage dad now all the money mom and dad had is gone and he still ended up in a nursing home. No I dont like how dad is dying its horrible no dignity to alzheimers! I was sick myself so really wasnt much help to them but I'm there now and to see my mom and sis suffer so much is worse then saying my final good byes to dad. I miss him already for years now. I will love him forever.

 
Old 12-11-2006, 05:46 PM   #9
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Re: Are there any other young people caring for alzhimers?

Hi, Salllly, I'm Ann (61) and my husband was diagnosed with AD at 59 ~ this past spring. Our children 27,34,37 were/are devasted, but I've encouraged them to continue on with their lives and not move back to the same town. We have continually visited them as the 27 and 34 year olds have two and three children and they have goals of their own. There were indications of memory loss in '99 when our youngest was in college, but I didn't share my perceptions as she was focused on her own life journey. I would encourage you to follow your dreams ~ listen to beginnings and cyt as they are right on.
Our greatest blessings are knowing our children are successful, fulfilled and living the path that God intends for each of them. They check in with me often and now come to visit us since traveling is more difficult ~ their input is so important to me, but I don't depend on them for helping care for their dad.
There are support groups, day care centers, various kinds of helps depending on your parents insurance and you might be able to help your mom find out resourses depending on the area you are in, but definitely don't be pulled down by the situation as it is not your responsibility. Our youngest daughter and her family came for Thanksgiving and shared that she is going to pursue her doctorate next year. Her sharing this new plain of theirs has given me something to dream about and not dwell on our situation. I dont' mean I'm living my life through their plans, but the joy of knowing they are pursuing their own dreams and visions has somehow lifted my spirits to new heights.
So get back on track and let us know how your plans are developing. Several of us will be YOUR cheerleaders!

 
Old 12-11-2006, 05:57 PM   #10
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Re: Are there any other young people caring for alzhimers?

Hi, Beginnings, I'm wandering what stage/level your husband is in. I don't want to become resentful...my husband retired in 11/05 and was diagnosised in 5/06. We sold our large home and moved into a gated community, two bedroom and feel like the meds are working, aricept and others to support the aricept. He doesn't take pills by himself, or prepare meals, but can still care for his own personal hygene every morning and makes the bed. He continues to drive, but I'm usually with him or he goes on one short trip to the store, gym, etc. I think he is in stage 3/4 and I wander how much longer before he won't be able to drive or I wont be able to leave him alone. I leave for about an hour at a time now. He watches a lot of TV and reads as much as he can...that has declined tremendously. He's very quiet now also. I know a lot of this is unpredictable, but Martha says she'd go to a facility long before necessary and we are in a situation where we could go whenever we need to a long term care facility...would you suggest not staying in our 2 bedroom as long as possible. Thanks for sharing your thoughts. You and Martha seem to be well seasoned and I am a planner who could use some wisdom.

 
Old 12-12-2006, 03:38 AM   #11
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Re: Are there any other young people caring for alzhimers?

Hi Ann,

My Mom stayed in stage 3-4 for a couple of years. Maybe 3 years, before she was in stage 5, and that lasted another 3 years. In the past year she has gone into 6 and now 7.

The hardest stage for her was around 4, starting 5. At that point she knew something terrible was wrong with her mind, but didn't understand it. Everything had changed, people acted different, her daughter (me) didn't allow her to go out alone, she felt like a prisoner in her own home. Friends avoided her, and she lost her orientation skills, thus getting lost several times right in her own neighborhood. She used to cry a lot and beg God to take her.

Now that is long over. She had a good year or so at the nursing home, which she thought was some kind of fancy hotel. She didn't ask about going home, I think she felt she was home. She enjoyed visitors even if it was unclear who they were.

Now she is apathetic. Not sad, not happy - just tired of it all. I am pretty sure her life is ebbing away, she is steadily losing weight, and doesn't pick up the phone. I have already missed her for 4 or 5 years - missed the real her, not the person who has taken her place, which we call The Imposter.

I just hope she lasts through the Christmas season, since I am having my son from Miami up here for a visit. (like your daughter he is in a graduate program, nearing his PhD) and I hope I don't have to leave for NY suddenly during his visit . My kids are 38,36 and 29.

love,

Martha

Last edited by Martha H; 12-12-2006 at 03:39 AM.

 
Old 12-12-2006, 07:58 AM   #12
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Re: Are there any other young people caring for alzhimers?

Thanks, Martha, your note helps me a lot with timing. It seems Dan has stablized then there is a day of confusion, but still think we are in 3/4 and have been for nearly 18 months, so I'm thinking in the next 6-9 months he won't be driving. He loves to run an errand by himself, but I'm on pins and needles when he does, yet he hasn't gotten lost yet. Forgets where he is going sometimes, but as long as he carries the cell phone I'm okay. On another chat someone suggested we go to the police station and get to know some of the people as we are in a small town. I don't think Dan is ready for that. Thanks again I so appreciate the ability to plan "what's next"...our daughter wants us to move to N. CArolina, but Dan prefers staying here til he does'nt know any different. More later, finding this site has been most helpful and your notes I linger at. I'll be praying for God's timing in all this so your son has a memorable time this holiday season and YOU TOO! Ann

 
Old 12-12-2006, 03:51 PM   #13
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Re: Are there any other young people caring for alzhimers?

Hi Lady Ann. I just went back and looked at the stages stickie again. I think my husband is in Stage 5 now, going into the 4th year after his diagnosis. His illness has progressed significantly this year. We'll be going for his annual appointment with the hospital in February and I'll get updated test results. He is still alone for about 5 hours a day, but I think we're getting to the point where that isn't going to be possible. He doesn't do anything in those hours anymore (he used to do some small chores). Based on what I see on weekends and when I'm home for a day, it appears that he now just sits, naps or does a small job over and over again, like wiping a counter. Sometimes he goes up and down stairs, as if he was going to do something but can't remember what it was. He might try to do a small chore like checking whether a christmas light string is working, and an hour later he'll still be picking it up and putting it down.

Based on our experience, I don't think any AD patient should be driving. When my husband was first diagnosed, he really didn't have lots of symptoms except that he struggled sometimes to find words. He was definitely at an early stage of the disease. The first neurologist reported his diagnosis to the DOT, and they sent him a letter rescinding his license. At that point, he was furious and I certainly believed that he was a better driver than our 16 yr old. After all, he had been driving safely for 40 years! We spent a few hundred dollars to go to a special center that tests people who have lost their licenses for medical reasons, to get a clearance for him. I knew he would lose his license sooner or later, but thought he'd be able to continue driving for at least another year or two. What an eye-opener! Even though he was in a very early stage of AD, he got numerous common street signs wrong on the written test. They also tested his peripheral vision and ability to multi-task. Although he was fine with driving and watching the road, his brain could not process a kid by the side of the road or another car moving oddly at the same time. His reactions were definitely not within normal, and he might not have been able to react to an emergency situation. Please reconsider having him continue to drive, even sitting next to him. By the time you tell him to "Watch out!" or "Stop!" someone could be hurt. It's not just a question of knowing directions -- the disease also affects judgments, depth perception and reaction times. (I also think it's easier for the patient to get in the habit of being a passenger when he-she may still understand the reason for it, as opposed to trying to convince someone who's further along in the illness that he/she suddenly can't get behind the wheel anymore.)

I'm hanging onto the house right now and not moving for a few reasons. The biggest is probably that I want the kids to get through school without disrupting their lives anymore than necessary, but being in our home is letting my husband be a little more independent for a little longer. We've lived here for 18 years. He can get a glass of water now -- but if we move, he'll never be able to learn where the glasses are. ..

 
Old 12-12-2006, 06:17 PM   #14
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Re: Are there any other young people caring for alzhimers?

Hi, Beginning ~ it's such a blow to read your e-mail, but I so appreciate your sharing truth with me and how it worked in your situation. This will be a difficult thing to confront as I was going to ask our dr. to tell him so he would take it seriously and not argue, but we don't go til Feb. He seems to handle himself so well so I thought that it would be okay if i'm along ~ although he has driven on short errands. Hummmmmmmmmm
We have discussed him not driving when I came to the realization that it wasn't safe, so I'm hopeful he will remember our conversation and abide my the "rule". He has expressed this will be the most difficult situation yet.
Again, thanks for your forthrightness in expressing yourself.

 
Old 12-21-2006, 11:27 AM   #15
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Re: Are there any other young people caring for alzhimers?

Beginnings, It's taken several weeks and many tears, but no more driving for my husband. We're just back from the mall and I drove. I've been driving all week, so now it's solid, but he was very resistant a week ago and sullen, but after several talks I think he understands. I just wanted to write back and thank you and Martha H. for your words of advise.
Somewhere on this AD Health Board someone gave a website to determine predicted survival based on testing, age, date of diagnosis. I wrote the figures down for my personal use, but have lost the website. I chat with 12 other caregivers and patients and they want to know the website. Do you recall where it was posted? Thanks, and Merry Christmas! Ann

 
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