My 56 year old husband has Alzheimer's. We are both seeking a support group geared toward early onset in the Phoenix area. Has anyone heard of any? He wants to attend and I think being around people closer to his age, going through the same thing would help. Right now he goes to a support group with elderly spouses and while they have been very gracious he doesn't quite relate. I'm 40 and also feel uncomfortable with attending though I haven't actually been because of my work schedule. I'm also looking for advice/resources on hiring a full-time, in-home companion/caregiver so I'm prepared when the time comes (if being prepared is actually possible). We have tried contacting Banner Health here in Phoenix but are still waiting to hear back after 4 months . . . Thanks for any help you may be able to provide.

hello micheal, I am too the wife of a spouse of Early Onset. He is 53 and I am 44. He was diagnosed 3 years ago. I am able to be at home with him and be the carepartner. We too went to the support groups but found it uncomfortable too as we were so much younger and had such different needs. How long ago was your husband diagnosed? What stage is he in at the moment? I almost stopped coming here as all the pickering but then I thought I would try one more time... I am in need of some one who would like to share and would like to be support even if on the net.. We are in Washington state 2 hours from the major cities.... Hope to here from you soon. Nae

Hi;
I am Bob, 56, and my wife Linda is 50 with early onset AD. She is healthy otherwise, and at first glance just looks her thin beautiful self. I take some of the credit for that, now that I am chief cook and bottle washer. She has lost 50 lbs. during the past 2 years, and now wears a size 10. What a hottie she is now. Lotsa veggies, healthy cooking, no snack stuff, chips, cookies- banned. I catch fresh fish in the warmer months, so we dine on striped bass several meals a week.
I am her full time caregiver, and don't work now. Boy I miss conversation. Linda rarely says more than a word or two, and that in response to a question. She paces a lot, and rubs her hands together. She picks things up and puts them down wherever. I hide the car keys now. Sometimes she forgets how to sit or come down stairs, other times she is ok with that. She needs help with everything. Dressing, shoes, cutting food, bathroom. Fully incontinent, so diapers always. I do a lot of laundry, and usually it is just easier to clean her up in the shower a couple times a day. Keep her away from raisins! That can get messy if she scarfs more than a few handfuls.
But... I am lucky because she is always in a good mood, easy to smile, and laughs at my jokes even if they are confusing to her. And she really likes music. It is the only thing left that really touches her and get her groove on. I can almost believe it is the old days when I see her smile and moving to a nice bluesy number.
What a hermit I have become. What with the diapers, needing assistance in the bathroom, lack of speech, needing rubber sheet protectors in bed, our travel, restaurant, and social events have about disappeared. Linda cannot use the phone now, and has nothing to say if she could. I was thinking recently that our old circle of friends has pretty much evaporated, at least from the standpoint of buddiness or support network. I guess some people must find it pretty damned awkward to deal with advanced AD issues. The truth is that she is royally screwed, and today is as good as it gets. I am finding it hard to plan for the future because I want to ignore it.

Hello Bob,
Well my husband isnt as advanced as you beautiful wife. But, the other day he was trying to look up an add informed me that there was nothing beyond the "T" and the really sad part he was looking up painting. So I know it is on a down hill side. He is so happy all the time too. He still talks to me but getting less and less. I can tell it confuses him sometimes. I cancelled the family pic-nic this year to much for him. And really what fun for me stressing about him. lol He has always been my superman. So do you have kids? Ours are grown 22,24,25 no grandkids. I understand about the friends they are goneeeeee haha. I guess they think it is catchie.. OK if you want you can e-mail too. Let me know and I'll give you my address for it. Nae

Hi Bob.Do as much with her as you can.Travel anyway,go & do all you can regardless of the depends.She can still enjoy things in the moment even if she doesn't remember them.BUT you do so it's making memories for you too.Hang in there.

Nae....

Alot of chaos lately on the board, isn't there? It has become my lifeline in so many ways, and after recent events I'm feeling better about the atmosphere and think we are getting things back to where they are supposed to be. A nice place is what it will be. I do hope you'll keep on keeping on. You're a good support person for EOAD caregivers.

I do hope your day is going well. I can tell you really care about animals too. Dealing with AD, and seeing the beloved pets become inadvertently disadvantaged because of it simply adds to the stress of the whole situation.

*I apologize for perhaps the way this was initially written and perceived.
It appears misunderstood, but the dog does indeed receive veterinary care. My comments regarding embarrassment taking the dog to the vet is because I have failed in promising to get weight off the poor dogs hips. Our vet is a very dear little lady, and our dog is heavier than she is. She did advise last year that the dog might be better off with a family better equipped to deal with him. She is very aware we are dealing with my husbands AD. And she has even tenderly spoken to my DH about it. She shared that both her Father and FIL have AD, and in fact she personally has taken over her FIL dog for the very same reasons. She even suggested the farm idea because she is all too aware of the unavailability of places to relinquish the dog and not have him put down because of it. Its a real funding crisis. The vet really fears the dog will be put down which is why I am so embarrassed that I haven't been able to remedy the dogs situation myself. I wish we could get the dog out for more walks. But he does get a walk everyday. A very persistent man with AD, who loves pets, and wants to feed them something is not going to sit still for having dog food locked up. He'd find leftovers if he had to just to feed the dog. Or find his way to the store to buy it. He isn't far enough along that I can control his actions that much.

It is out of love for the dog, and his right to be healthy and happy that I look for a better life for him.

I also want to through out that if it causes your wife to much confusion I dont think that is healthy. But if she enjoys it go for it. Also in my husbands and mines case we have made certain deals I will up hold and one is not to take hime out when he no longer has control over himself. Nae

Diana,
I am sory to have been so rude I had just been reading all these other post that were soooo very negative and well lack of sleep again sorry...I do understand about husband being not far enough along...My DH has to be reminded sometimes why we dont do somethings. DO you ever get frustated that YOU forget he sick because you are in between??? OK yes this is my lifeline too. It is very hard to get those who dont deal with it to understand. I get so tired of the remarks " I forget too" or "he seems to be getting better" FOR GODS sake came live with me cant you remeber he hasnt driven in 2 years or worked in 3 . This is what I want to scream some times. While I am at it, I have learned that how are you doing really means in SOME cases I feal quilty and should ask... OK done until later Nae

Bob
Hi Tom Bumps here you sound like we should be good friends as my wife is in the same shape as yours if you want some one to talk with call me.270-361-2593

Hi everyone. My name is Susan. I guess I should have used my name instead of my husbands (Michael). I’m new to this sort of thing so bare with me. . . (can someone tell me what ‘DH’ stands for?). We have 5 children between us but none in common. The youngest, mine, is 16 and at home but pretty much avoids Michael. They have never been close. I moved out my college age boys to reduce the household stress. Michael has a son not much younger than me but he really wants nothing to do with his family. His daughter is very supportive but lives in another state. Michael was finally diagnosed with EOAD last summer. This was after at least a year (maybe even two) of being blown off and told that he was too young to have AD or on the flip side that he was just getting old. A Neurologist (I think the 3rd one we saw) finally took his problems to heart and confirmed the diagnosis with a PET scan. Michael thinks he is in stage 3 but I’m not up on the stages so am not sure (apparently I should be). The last time we saw the Neurologist (about 5 months ago) he was ‘mild’ but the symptoms were bad enough to have him go out on disability with the government and get approved for Social Security. I think his symptoms are rather atypical (I say that with not knowing anyone else who has EOAD) as most of the deterioration is physical (lot of difficulty speaking/writing, frustrated in crowds/changes in routine, significant problems with coordination like driving/walking/using his hands, paces). He hasn’t wandered off and remembers most things though that is slowly changing. He is still driving but it won’t be long (physically having problems controlling a car and can’t drive anywhere new or with heavy traffic). He has good days and bad. He describes the bad as being in a fog and has a bewildered look about him. After reading what some of you are going through I guess it is mild though sometimes it seems worse.

I just feel like someone needs to tell me (like a professional) what to expect and when, what I should do/not do or say/not say to him, etc. but no one is. I’ve always been a planner and think I can deal with just about anything if I have information but I’m totally out of my element on this one. Most books seem geared toward the elderly and elderly type issues, or generalize the stages but don’t offer coping mechanisms. Has anyone found a book that does? As a for instance, I may have to move to promote in my career but is moving out of the question now? Is a career out of the question – I notice you are all full-time caregivers? I hate to admit it but I don’t think I’m mentally/emotionally cut out to be a full-time caregiver (I think I would have a nervous breakdown – I’m very squeamish) not to mention my career helping young veterans is important to me and will be my only livelihood after Michael is gone. We should be financially ok with having someone come in the home but can you think of any pitfalls with that? Have any of you thought about nursing homes? They make me very nervous (go figure) and I think Michael would be better off in his own home, with his own things and a set routine, rather than being surrounded by strangers. However, he is insistent that when he needs constant help with basic daily living skills and/or in a constant fog that he wants to go to a nursing home. Did any of you talk about this sort of thing before the progression? Do you have a right to an opinion? This probably sounds selfish but if you are very uncomfortable with leaving your spouse in a nursing home does the AD spouse have the right to put that emotional burden on you? I mean they won’t know the difference but you will – does that make sense? I see how emotionally drained some of you are but do you feel a certain satisfaction by caring for your loved one because you think it is the right thing to do and/or you know no one can do it better? Sorry to ramble on but I’m curious at your beginnings/plans/thought process with all this. Thanks for any input.

Susan, my name is Tracy and I am 42 and in the middle stages of Alzheimers Disease. I was diagnosed in 2002. I am glad that you are here and honestly it would do your older kids good to be here as well, seems that you all have alot to learn.

First, HD = Dear Husband. I don't kn

quote:

quote:

ow what your lives have been like or how long you have been married but the more that I read your letter the less caring that it sounded. Your husband has ALZHEIMRER'S DISEASE and you are worried about a career!!! OMG = Oh My Gosh!!! First of all, the whole family including the kids whether they like him or not need to be educated about EOAD = Early Onset Alzheimer's Disease, which means diagnosed before the age of 65. You all need to do family counseling if you are not already and it doesn't sound like you are. Michael needs support from ALL of his family especially you!

Is he on any medications? If not, that is the next very important step. If so, then with love and support he will go along way. Michael still has alot to offer and alot to do. I am stage 4 maybe early 5 and I speak at conferences with my next one being in Oklahoma in 2 weeks. Maybe you could come, it would really open your eyes. There will be several others with EO = Early Onset speaking as well. His life is not over and he is and can still be a very productive part of society.

Can you not keep you job position as it is and then when Michael does become incapacitated or passes away you can move on? If you love your husband, now is the time that you and he BOTH need together. Make new memories for you to hold on to, enjoy the moment and don't worry about tomorrow because all that anyone ever has is today.

I am sorry if this comes across very snide but it pains me to see anyone trying to push their loved one off and continue on because they have their own life to live. He is apart of your life, he is your husband, he should be your life.

Hello Susan and Welcome,

Making this adjustment is an entire family affair, as you know. You've already made some of them. One of the most important steps you've made now is seeking information and support. This message board is a great place to be. I also recommend posting in the "caregivers forum," as well as "questions for the care consultant."

I understand regarding your 16 year old, his age coupled with not a great relationship PRIOR to diagnosis will be difficult at best. Not because of the disease, but because of their difficult "personal" "pre-diagnosis relationship between your husband and son. My oldest son, from my first marriage is now 25, married, military. He isn't close at all to my husband who has been in his life since he was 8 years old. He lives across country, is cordial on the phone, but has very little compassion toward my husband. But again, this is due to the turbulent relationship prior to AD. As a kid my son could never "measure up" to his step dads expectations, and now as an adult my husband can never measure up to my sons expectations. I think in this very roundabout way I'm saying the quality of the relationship prior to the diagnosis is what makes the current relationship when it comes to teens. They don't yet have a capacity to accept their relationship issues in the pre-diagnosis period, due to misunderstandings, might have actually been due to the AD. Eg: my son was called a liar and punished for something his stepdad had forgotten about, then denied to me that he punished my son at all. This is while I was at work. I'm not blaming or excusing either party, but making my point that AD, pre-diagnosis wreaks havoc on relationships because of misunderstanding, but strong relationships can and do survive this.

You'll definitely need support from family, friends, and others either who have EOAD, or others who are caregivers. You've found a good place.

Hi Guys I am the new kid on the block. My dad has what I call the intermediate stage of dementia and as a daughter I feel lost and alone. Although I know that GOD is there for me but that what does one do...how do you cope with seeing someone that you truly love go down hill without brakes? Input anyone??? I find myself crying for some of the meanie things he says. Help :[

Hi,

This is my first post on this site. I've been browsing off and on for the last couple of days. I can completely relate to your struggles and the decisions you are facing. My husband is 46. He has been diagnosed with dementia. We haven't gotten a diagnosis of EOAD, but it looks more and more everyday like this is where we are headed. I am 37. We have 2 kids at home, a son whose 11 and a daughter who is 8.

I love my husband very much, but if the finances are going to come together, I have to continue to work. I have been thinking over the last couple of weeks about finding someone who will come in a couple of hours a day. They could make sure that my husband eats lunch (or at least a meal during the day) and do some light cleaning. That would be reassuring for me, but I think it might unnerve him. Sometimes he can handle strangers and sometimes he can't.

I don't know how to best take care of him. I don't know how to manage the relationship between him and the kids. My son is slightly afraid of his dad. Robert has a habit of just grabbing Ryan if he wants him to move from one spot to another. Instead of telling Ryan to do it, he will just grab him and start to move him. He doesn't do it in a manner that will hurt him - it just startles him.

I don't think you are uncaring. I think you are just overwhelmed. You feel your life slipping away along with your husband. Your partner is disappearing right in front of your eyes and it is so not fair.... You do have to consider your own menatl health when making decisions. I have noticed that on the days I am really frazzled, Robert is much more anxious and confused. If I am relaxed, it seems to help him relax.

So, if working outside of the home keeps you sane, do it. I am sure when the time comes and it is no longer safe for your husband to be home alone, you will find the right person to come in and help. Or maybe at that time, you will feel differently and will want to stay home. For me, staying home is not an option. I talk to Robert a couple of times a day while I'm at work. He seems to like this. He will often try to get off the phone quickly, but it helps to stay connected in some way.

I know what you mean about planning. Maybe the best thing to do at this point is know that everyone's situation is just a little different than everyone else's. I like to have a plan of attack in mind for everything. It is comforting to know that you can handle whatever comes next. I am learning with this type of illness, that may not be something I can do.

You just have to take things one step at a time. Learn what you can so that you will be able to recognize these decision points when they come. I am thinking of checking out the local alzheimer's support group. You should look for one in your area. I am sure there are people there who have been at the stage you are at and can share their experiences with you.

Lelore

Susan:

My husband 53 has EOAD. We have will have two kids in college this fall. I have to work to support them & my DH. I have been fortunate to have had a job interview this past week to go back to a previous employer with an income that will support us & pay for college. I'm expecting SSDI to take a few years to be approved so we have to live on my income. I am going back to my former employer (even though my job will not be as challenging) but it is a caring place where they know about the AD and understand that I can not travel.

My husband is in great spirits and ended up in intensive care this past weekend. He past out after church was over and I took him to the hospital ER. He was admitted and his heart stopped. He was then "life flighted" to another hospital. I told him "don't you dare die on me now I'm healthy and I've got pleanty of care giving years left". The cardiologist wanted to give him a pace maker. I was horrified since aneshtesia can possibly progress AD. The doctor blew off my concerns and said his brain could not work without a heart. Thank GOD we had another doctor come in and he did a tilt test. The new dr. felt we could control his condition with meds and he could continue his life as before. The day he was released we ran together for 3 miles!

My husband is my best friend and I am his advocate. I still want to "save" him and am trying to find a clinical trial. It is my job to see that he has the best quality of life possible. I enjoy every day that I have with him. I refussed to move out of our house even though we would have more money to live on if we could down size. We have finished basement with a bed & bath and if/when the time comes I would like to have a live in care giver. If at all possible I would want DH to stay home.

This is a tough journey for all of us but we need to always think of the patient first.

I too am my DH advocate and best friend and I too have been ttrying to find trail studies for him but alas he is TOO young. Either he has to be at least 60 or minimum 55 for Goodness sakes that is like saying we wont bother to test some one with Aids until they reach the 5th symptom. I am so sick of the buricrats and the systems. As for the social security. If it is all documanted and the physcoligist sees his decline it will take about 6 months. That is how long it took us. Nae

Younghope: Thanks for the candor. It is refreshing these days as we get told what to do by people who have no idea what we are going through or patronized (the sympathetic ‘how’s Mike’ with the accompanying boo boo face/tilt of the head by people I know don’t really care and are just being ‘polite’ or nosey). I do have a wide range of emotions/thoughts (some selfish/some selfless, often somewhere in the middle) and threw some out there specifically for feedback. I don’t see the point of lying that I think about surviving this (it is also one my husband’s obsessions by the way). It is also hard to explain my thoughts fully in writing to people who know nothing about me or my husband. We just came to accept the diagnosis about 4 months ago and are trying to sort it out. We were convinced he had Huntington’s disease because his symptoms are almost all physical but which has since been ruled out based on a conclusive blood test. As for my career, it is the same career my husband had and had to give up about 8 months ago. We help returning war veterans (mere babies) get back on their feet by accessing a confusing myriad of benefits. My oldest son just returned from Iraq/Afghanistan so it is very personal. My husband has the same commitment fueled by two tours in Vietnam and 20 plus years in the Air force. It is what we do, done so for 13 years and how we met. My husband’s face lights up when I come home and tell him funny stories of his old boss, the crazy antics of my employees or the heart breaking story of a 20 year old with a permanent colostomy bag. My husband goes with me sometimes when I do night briefings at an Air force base that he retired from and helped to close down. He tries to help but gets frustrated because he can no longer speak very well. I love him just being there. A promotion would mean I could help even more veterans but I keep coming back to what you also mentioned about chilling out in the position I’m in. That was reconfirming and I thank you for that. My husband has a different perspective and one we have argued about. He doesn’t want me to give anything up. He is very independent, as am I, and has planned his entire life knowing that he could die young. He wants to go into a nursing home the minute he needs any ‘help’. I’m to cut the ties and run apparently. I have no intention of doing that. His father died at 42 years old after going ‘bonkers’. It is obvious to his family that it was Alzheimer’s but at the time (late 60s) little was understood about the disease and early onset was unheard of. His family was devastated and as the oldest and only boy it was up to him to take care of his mother and two little sisters. His mother couldn’t even drive. He vowed never to leave his family in that position and even made his first wife get her RN so that when he did die young she would be independent.

Michael’s ‘independence’ also drives his relationship with our kids. We actually chuckled at the mental picture of getting everyone together for counseling. He said, ‘talk about stress – gees’. While I agree the two of us definitely need counseling, his relationship with my kids is more of a ‘mom’s husband’ than as a step dad. That is how we set it up at the beginning of our marriage as they have a relationship with their own dad. My kids have little or no animosity towards Michael but he definitely makes them uncomfortable with his ‘bizarre’ behavior. My oldest son was a little hurt when I asked him to move out as he didn’t see why his comings and goings in the middle of the night, tripping the alarm, friends parading in/out, washing at 2am, etc. would stress anyone out. I think he understands now. Michael’s daughter is very close to her father but unfortunately lives in Texas and is raising two small boys (who bring him a lot of joy) often by herself when her husband goes to Iraq. Michael is also close to one of his sisters. She comes out from California every few months to be with him. I think by and large our extended, if not very blended, family will adjust given time. Michael’s son, however, may be a lost cause. He is 37 but acts like a spoiled 5 year old. He has tried pushing his entire family out (except for the sometimes obligatory dinners, etc.) of his life since his parents divorce 15 years ago. He doesn’t return his father’s phone calls and Michael has taken a piss on him approach. I think his son’s wife wants to make amends as she is expecting their first child but I think her husband prevents her from really doing so. I think one day Michael’s son will regret his behavior. At this point I have no use for him as I see how it makes Michael (not to mention his sister and his Mom) feel.

Michael is on Aricept (can’t really tell if it is working) and a drug for depression (with good results). He wants to do a drug study for any new Alzheimer’s drug but hasn’t fit the criteria yet. Can you tell me a little more about your conference in Oklahoma? Thanks.

Question for everyone: Have any of you moved? We always thought we would downsize and move closer to work when my daughter graduated from high school but I’m wondering if the change would be too stressful for my husband.

Susan, thanks for sharing more of your story, it now makes better sense and I understand more of your relationship. That is one thing about being here, for us to be able to help and understand each other, we have to share our lives in many respects or the efforts are useless.

I commend you and your husband for your profession, I have an older brother that served in Vietnam from '69-72, came back as one of the lucky ones, physically anyway. I understand how this can/could be so close to your heart.

As far as the counseling, I wasn't talking about you and your husband, I was speaking of you and your kids, to help to understand the process of the disease better and how to help him in the long run. I can tell you personally that counseling does nothing for the person with dementia as we don't retain information from one meeting to the next and our decline of comprehension many times inteferes.

There are days as I am sure you know by now that "we" have good days and bad days. We may be foggy and need alittle more direction or understanding and then tomorrow it as if it were all a nightmare and we are perfectly fine (well almost!) These are the early stages of the disease are do not warrant nor would it even qualify for a nursing home, Assisted Living - a BIG maybe at the least. Maybe your husband could take what he is dealing with now and help others with understanding Alzheimer's Disease as he has in helping so many veterans in the past? To every ending there is a new beginning....

The conference in Oklahoma on June 12th is actually focused on Families with Alzheimer's. This year my husband will be speaking, if I do, it will be very little. But it is to show how Alzheimer's has changed our relationships and lives, what we have found that does and doens't work, etc. Micahel Reagan is the Keynote Speaker. In AUgust I will be speaking about, "Diagnosis, now what?" That will be in CHicago.

Anyway, hope some of this information helped.

Hi Susan; everything that you have expressed is very very normal! You are in the prime of your career- don't apologize to anyone for that or for feeling overwhelmed. I used to think my job was stressful now I find it is one of the thing that makes me stay sane. Having said that , I would try to avoid any major decisions or changes right. What works for one person won't nec. be what works for you.

I am a current Director at Hope Research Institute in Phoenix AZ, and would like an opportunity to discuss alternatives to Alzheimer's patients and their loved ones. Our company offers many different clinical study opportunities for AD and all studies are overseen by a board-certified neurologist.

This type of forum is a wonderful breakthrough to understanding this disease and I wish all of you the best. Please feel free to contact me anytime to discuss our study opportunities. If you would like to know more about all of our current trials, please visit our website at www.hriaz.com or contact our office at 602.288.4673. CenterWatch is also a great resource to find a multitude of clinical trials in your local area. Warm regards, Adam

For more information please contact:
Adam Thompson BS, CRC
Hope Research Institute
3120 E Union Hills Dr
Phoenix AZ 85050
602.288.4673