It's been some time since I last wrote - I'm here now as aproverbial repentant 'sinner'. Renee's EOAD is progressing at an awful pace. Her most recent MMSE scoring was 11 (out of 30). She is less and less interactive, and more sadly, less and less aware. She is ever more withdrawing into her 'self', when I or our sons, family and friends, can not go. But of a more positive note: she is not in any pain and is generally of a happy disposition. There are many vacant zones in what was once a wonderful marriage and relationship. So many things that can be no longer shared, or indeed new experiences opened-up. The is a drudgery to the path she and I are on, and only one of use aware of it's awfulness. The God's were angry with her (and maybe me also) when she was blighted with this disease. Why a loving mother and wife can be so imposed upon, that is a question I will ask of my God one day. His answer will be at best trite - maybe my anger is miss focused. To all of the cargivers out there I remain in awe of the daily challanges you face, and more importantly, how you overcome them and re-join the daily fight for your loved one and yourselves.
We all struggle through the challenges and only overcome them one day at a time with a lot of support and information.
As to the "whys" of who gets this disease - I have never questioned it. Instead of "why him?" , my question is "why not him?" The disease does not discriminate. Someone from every walk of life gets AD. More importantly, no one from any walk of life escapes having something horrible happen to them at one time or another. AD just happens to be what happened to us, and we do the best we can to deal with it.
torps--as a fellow EOAD caregiver, I can tell you I did the same questioning of G-d that you mentioned. Why did my husband, as a young teen, have to live through his Dad's EOAD and then receive the dx himself at age 60? Wasn't the experience with his Dad more than enough for one lifetime? But over time, I realized it was pointless to ponder that question. I taught myself to just deal--there are no answers to the "why".
Dear Admin and MarilyninMD, There is a solace and acceptance in your respective situations and words, alas I'm not there - yet. I angst for Renee and her plight. I recognise that the 'blame game' is part of the grieving process, it just that I can not accept the unfairness of it. So much lost love and sharing, all lost.
Each of us comes to acceptance at our own pace. It took me 4 years of kicking, screaming, crying, and fighting to finally accept. We're here to give you support through the process.
torps, this is an incredibly hard journey and one which none of us wished to make. My husband talked about retiring all his working life. There was nothing specific, just not working. He retired at 59. I believe he would have been asked to leave had he not accepted the retirement package that was offered. I found out from our friend with whom Gord worked that other workers were coming to him and asking why Gord was asking how to perform the very jobs which he had taught to them. After that journey is done, there is the journey of dealing with loss. Dealing with guilt, sadness and the normal grieving process. It takes amazing strength and courage to get through the whole thing. You will find that on this website.
I wish I had the right words to say. Only that on this journey I have been through all the phases that everyone else goes through. And we just go along. I have learned that I am stronger than I thought. I always felt that I needed a man to take care of me. I now see that I am able to do things myself and am stronger than I thought. Also my DD who is 16 is so thoughtful to her dad and others with life changing problems. She is not into herself and the drama that most her age would be in. She has a very good outlook on life and is the one who keeps me cheered up. She knows her dad is never going to get better. But she is happy he is still here for her in the very limited way he is. And right now Dh is happy and content with his life. And in the end that is all I could hope for.
Don't feel torps that it is just you. Bad things happen to good people and good things happen to bad people. That is just the way of the world.
jang* the same thing was happening to my DH and they retired him out at 58. Thank goodness he had a great staff who helped him along.
Torps: The journey is a long test of one's endurance. DW and I began in the late 80's caring for DW's mother after her father passed away at 63 years old due to botched surgery. Both DD's were old enough to remember the horror scenes of their grandmother's AD induced raging,agitation, incontinence etc. We cared for her mom for several years until we placed her in a NH. And now their mother is cursed with the same disease. I can't imagine what terror must be coursing through their minds, yet they deal with it. They've both refused gene testing. The thought must always be lurking in their mind. My DW's condition sounds much the same, no discomfort, she's always tired and would prefer to sleep that participate is any sort of social activity. The stress of being unable to communicate or participate overwhelms her. I thought our social life, or what remains, had come to an end due to her indiscriminate spitting. A problem I resolved with meds and with having her help me wipe the floor. Some how that penetrated and she's try to say "disgusting" when wiping the floor. Over a period of only a few short weeks she now always has a tissue in her hand and no longer spits on the floor. (Off topic but even the bleakest of problems can be dealt with) Both daughter's with their families have visited with us over the past two weeks, in part because I had a cornea transplant combined with the usual post camp and pre start of school visit. I can say is if nothing else, watching my grandchildren and my children exhibit non stop loving care and actions toward DW reassures me that disease has not been able to penetrate the love of our family and DW and I raised two super daughters, both of whom have married really nice guys and who in turn have blessed up with 4 grandchildren. No matter how difficult the journey look around you'll find something to sustain you
We are only two years since diagnosis for my husband. The first year I spent screaming in denial, angry at so many fair-weather friends and uncaring family members, and even angry at HIM!
I would never have believed how I am now, as he swiftly moves through the stages of EOAD. (He is now 63) I shower and change him, deal with incontinence, all the cooking , cleaning , yard work, my small business trying to bring in a well needed income, etc etc etc.
And I smile MORE that last year, and accept, and do not cry out near as often. As for God, no way I blame God, it is the way of this crazy world we just never know. Only on the other side perhaps it will make sense. But in the meantime, I grasp for those happy moments, and there are many. I know I will freak out again, and as it may be a time coming when I need to place him, I know, that will be terrifyingly sad. (I do not want him to die at home...)
So keep coming back we all understand that is for sure.
torps, we all grieve along side you and Renee. If any of us could undo what is done and turn the clock we all would. But all the would be and could be does not change or diminsh the daily tasks of love that we all face. Yes you are overwhelmed and overcome with emotion and grief. You are also bone-tired and it is hard to see the light at the end of the tunnel when you are so weary. I applaude you for all you have done for Renee and the children. Now, it is time for you to take a deep breathe, use some respite time from where ever you can get it, and recharge your batteries for the rest of the journey ahead of you. hugs and prayers.
Acceptance is one of the more difficult aspects of EOAD. It is especially difficult if you are a logical, reasonable person who is used to getting things done through working hard and smart. EOAD transcends everything. It does not care if you are smart or stupid, tall or short, rich or poor, devout or a pagan. Do spend some time being angry, because you can't not be. Work on getting over it though. Rejoice that she is not in pain and generally of a happy disposition. Take this time to rest and get in shape. You will need your strength later. You will need it so you don't lose your mind when her disposition is less happy, and more so, in dealing with the medical community full of processes and procedures that just bring terror to her.
Yesterday, my wife would have been 55. She died in Feb 2009. Acceptance helped me provide the best care possible for her. Acceptance helped me survive. My advice is to get to acceptance as quickly as you can. You have work to do, and most of it is heartbreaking.
I try not to think about why my husband, why am I in this position? My husband had pray and anointing when his dad was diagnosed - something we believe in. Why was that prayer not answered? For me I have to believe it was in my God's way, not mine. We all have to come to terms with our belief system or it will eat us up.
Why, why, why? If I lingered on the why I would really be depressed. Try not to focus on it. Do not ask why, just where from here to get through this horrible disease.
I cry as I read this thread. They say our life is mapped out when we are born...but why this horrid disease. It just gets harder and harder...I thought I had accepted it, but now he's in N/H, and seeing the downward path he's on, I'm again asking....why?
oh Julia I just read on the other thread about your awful experience at the home . That sounds unacceptable! They can't all be like that.
Our pastors wife said it is the one thing that shakes her faith, her husband seems to be in the early stages of AZ. She keeps bringing up the scriptures about God giving us a sound mind.And she wonders, why it says that..and then he as a believer , is getting this?
I stopped going to church last July when my sister died, I will not accept that she is in "hell" because she is not a Christian. I am not trying to rewrite the faith, but just, cannot, accept that. I just don't get it either, I still hold on the the hand of Christ that is as much as I can do.
I am so sorry Julia, but to me, it sounds like you will have to find a better place for him.
Last week I posted this quote I happen to come across. I now have it on my refig. and read it several times a day and it does help me. 'WHEN YOU THINK YOU ARE DROWNING IN LIFE. DON'T WORRY, YOUR LIFE GUARD IS WALKING ON WATER."
Most of us here have said "why me"..."why my spouse?....where did my life go? Is my life now over? Is this all that is left for me and my spouse? The answer is...who knows. What we do know we have to play the hand that is dealt to us. We don't have to like it. We don't have to play our hands the way others want us to. We don't have to be comsumed by the hand we are dealt, but we have to learn to play it to win. To win means to do the best we can and to try our best not to fold our hand and become a real loser. To be a winner in this game...is just doing the best you can without guilt. Quilt is the losing hand in this game.
Many men here do a wonderful job of caring for thier spouses and others have chosen to place their spouses so they can continue to work and have a life outside of being a caregiver. We never judge the decisions others make. Many women on here do a wonderful job of caring for thier spouses to the bitter end and then there are others that just can't do that because of their physical limitations or just because they can't handle the stress of caregiving. And, no one here ever judges them either.
Right now....you maybe need to sit down by yourself and chart your course of being a caregiver. Don't think about what you will be losing...think about what you might be gaining. And, this is so personal for each "captain" of the ship that I won't even suggest what course you may want to chart. I have charted several courses and gone way off course many times...but, there is a certain satisfaction in knowing you have a plan. And, at the end you will know you did your best and your best is all that matters...not what anyone thinks, etc. Chart your own course...don't drown in this life situation... and don't worry...Your lifeguard is walking on water.
Coco...we didn't go to church, except for weddings, christnings etc...but we believe and we prayed in our own special way. Dh has a great faith in God...and thanks him all the time for the good life he had before this.. sending hugs to you all out there...
I love your post too Judith.... it is so true and so potent..... Thanks for posting.
Torps it is nice to meet you but I am sorry it is under such horrible conditions. Love your dear wife as you have never loved her before, give her hugs and kisses and wipe her tears. Listen to her voice while she can still speak and soak up all the memories you can while you can still make them with her. We all have questions even if they are not the same as yours. We come here to share them and get guidence from others that understand what we are going thru. You came to the right place. For your sake,,,,, relax because the going is going to be the toughest thing you have ever gone thru. But we will all still be here for you and with you and your dear wife. Thanks for joining us.....
Marty, my sons worry a lot about getting Alzheimer's. Our younger son deals with it by reading tons of self help books and getting medical tests for everything. Our older who is diabetic is also very afraid. He doesn't talk about it the same but I know it haunts him. Gord had the APOE4 gene. I think that is the right name. Sadly, it seems to have come from both sides of Gord's family. I am pretty sure that his mom had it although it wasn't diagnosed. She was doing many things like Gord did but then had a stroke. I found out not long ago that one of Gord's uncles on his dad's side also had it. I have not told the boys about him. They are worried enough as it is.
jang: Do you know what percentage of EOAD people have that gene? I wonder about my dh but his father died at the age of 45 with a heart attack and his mother died with cancer in her early 60s. His mother had 3 sisters but they all three were killed in an auto accident at an early age. Because of all these early deaths there doesn't seem to be any way to find out. But, I was just wondering if most EOAD people have that gene or is it very few that have that gene. My dh was dx when he was 58.
,The results come from a team of scientists investigating why a gene called ApoE4 makes people more prone to developing Alzheimer’s. People who carry two copies of the gene have roughly eight to 10 times the risk of getting Alzheimer’s disease than people who do not.
This is one stat I found. Here is another:
Early-onset Alzheimer's disease occurs in people age 30 to 60. It is rare, representing less than 5 percent of all people who have Alzheimer's. Some cases of early-onset Alzheimer's have no known cause, but most cases are inherited, a type known as familial Alzheimer's disease (FAD).
Familial Alzheimer's disease is caused by any one of a number of different single-gene mutations on chromosomes 21, 14, and 1. Each of these mutations causes abnormal proteins to be formed. Mutations on chromosome 21 cause the formation of abnormal amyloid precursor protein (APP). A mutation on chromosome 14 causes abnormal presenilin 1 to be made, and a mutation on chromosome 1 leads to abnormal presenilin 2.
Scientists know that each of these mutations plays a role in the breakdown of APP, a protein whose precise function is not yet known. This breakdown is part of a process that generates harmful forms of amyloid plaques, a hallmark of the disease. A child whose mother or father carries a genetic mutation for FAD has a 50/50 chance of inheriting that mutation. If the mutation is in fact inherited, the child almost surely will develop FAD.
Critical research findings about early-onset Alzheimer's have helped identify key steps in the formation of brain abnormalities typical of Alzheimer's disease. They have also led to the development of imaging tests that show the accumulation of amyloid in the living brain. In addition, the study of Alzheimer's genetics has helped explain some of the variation in the age at which the disease develops.
NIA-supported scientists are continuing this research through the Dominantly Inherited Alzheimer Network (DIAN), an international partnership to study families with a genetic mutation that causes early-onset Alzheimer's disease. By observing the biological changes that occur in these families long before symptoms appear, scientists hope to gain insight into how and why the disease develops in both its early- and late-onset forms. In addition, scientists are attempting to develop tests that will enable diagnosis of Alzheimer's before clinical signs and symptoms appear, as it is likely that early treatment will be critical as therapies become available. http://www.nia.nih.gov/alzheimers/publication/alzheimers-disease-genetics-fact-sheet
I would love to have my husband tested. I forget the guy on here who had his wife tested and she did not carry it. So, not all EOAD had the gene - probably more do not than do. I think he said Medicare paid for the test - would love that as we can't afford it.
jang*--I don't know how old your sons are, but let me give them some advice. My husband handled the threat of AD (his father had it in his 40's, Steve was dx at 60) in a very sane way. First, he lived a very healthy lifestyle--minimized stress/happy marriage/ate well/exercised daily, etc. He and I stayed out of debt; we traveled a lot when we were young (did not wait for retirement, like many do) and most importantly, got a great LTC policy. I don't know if your diabetic son can qualify, but both should look into it and get whatever type of policy they can afford asap. Some coverage is always better than none. There is no point to worrying about it--advise them to be proactive, perhaps new treatments will be available by then, if/when they are dx. If they can handle the psychological fallout of genetic testing, have it done AFTER LTC ins is in place. Even if they have the "bad gene", a fertilization process exists where they can avoid passing it on to future generations.
Hi Marilyn, my boys are 40 and 42. Both have had very stressful lives with the mother's of their children doing everything in their power to turn the children against their fathers. My grandson is 13 and has heard every day of his life what a rotten father he has. My son has phoned his son every day of his life, fought tooth and nail to gain access to him and paid his child support in full on time. Also paid is extra curricular activities. The other son is much the same. Anyway, life is settling down for both of them and they are obsessed with exercise, eating well and keeping their brains active. Gord had the testing done for the gene while attempting to get into a study. He had to join a different study because of the gene. I have read that having that gene is not a death sentence. There has to be quite a few factors happening to cause Alzheimer's. I pray that is true.
I was told for the apoe4 test which is the only one his neuro recommends is $600+. Not much for some but for us it might as well be a million.
As I have said all along - now I am glad we never had biological children - no chance of passing it on. My heart goes out to all of you with children and pray they never have to experience AD.
I read the book, “Still Alice” & passed it on to my 2 older children. In the book it mentions the test for the gene. My daughter said that she was probably going to have the test & then our son called me from his doctors office when he went in for routine blood work & told me that the lab tech told him that they could just do the test if he wanted to. I have no idea if either one of them actually had the test, but my son did say that his wife told him that if he had the test she did not want him to get the results & she didn't want to know either because then anytime he would forget something they both might wonder if it was AZ starting.
My son said the same thing about the testing. He didn't want the result-so why bother. I would also be concerned about future insurance. While the result wouldn't be available the fact that it was done would be.
Yes, the way our insurance system works you are encouraged to not know anything about possible health problems that might be lurking. We had that situation with L, a psychiatrist thought she should have a neuropsych test 10 years ago to help find a diagnosis, but then thought having a diagnosis could cause future insurance problems.
Judith--my husband's neuro told me the testing would cost about $4,000 (would not covered by insurance). This was about 5 years ago--I presume it would have determined whether Steve has the "familial" EOAD or not. Anyway, since there was no benefit to him, I decided against it. As time went by, because of the slow rate of progression, it appears to be the later-onset version of AD that just occurred at a younger age.
23 and me direct to consumer genetic testing is $300 and is free to people who are diagnosed with Parkinson's Disease. It does include testing for the APOE gene: https://www.23andme.com/health/alzheimers/ I did it for my husband and found the information so interesting I went ahead and had myself tested. I don't recommend it to anyone who is under 65 and not in a very stable job (as I am)--there is a risk of getting information that could cause an insurance company to reject you.
Ditto on the all the coments about not testing just to know. #1 the insurance company will drop you like a hot potato and you will be labeled with a pre-existing condition, making new insurance impossible. #2 the pyschological stress of knowing that you have a postive result is too much for many to take. It will definately affect the quality of life and relationships. Some things are better left to the unknown.
I know this is a little off the subject....but who else has found with EOAD that it moves so much faster!?!?!?!?! It seems as if hubs is just moving along with the progression of this horrid disease so quickly....he is 48 dx 2 years ago and really moving into stage 6.
We have no children, so I decided against having the test for DH (I was refered to a study group on FTD which would have conducted the test as part of the study and would be free). The dr did tells us that probably 50% of the nieces/newphews will get it. I told DH's brothers what the dr said and they can decide whether or not to share info with their children who can decide whetehr or ot to test.
My 2 adult boys were advised of genetic testing when DH was diagnopsed with EOAD, but they both passed, too. Their reasoning..."why in the world would I want to know that"?
samismom22--I believe it's the familial EOAD variant that moves much faster. Also, it depends on at what stage the patient was dx. My husband was dx at age 60 with MCI, is now late stage 6 over 7 years later. That is considered slow progression. Does your husband have close relatives who had EOAD?
Hubs has no family history anywhere with anyone with Alz. Both of his parents are healthy and their 80's! He was tested for the APO4 gene and does have that. I just don't get it........
Samismon22, my DH was diagnosed in Jan. 09. He was moderate then. He is now in stage 7. Most of stage 7 except he is not bed ridden. He can get up and walk very very slow for a few steps... I think this is moving very fast. He is 57 now, 54 when diagnosed. No one else in family has this or Alzheimer's. It is a bit of a shock to see so much happening so fast. I hope things get better for you....
my DH was diagnosed at age 58 - he will be 67 next month. He progressed rather slowly at first, but his decline over the past several months is alarming. It astonishes me that we've been dealing with this hideous disease for so many years. There are so many threads regarding EOAD, I wasn't sure where to post, but here it is. DH hasn't been violent, but he is crabby as hell most of the time. Thankfully, when he's not a day care (5 days a week) he's content to sit in the bedroom and pretend to watch TV. He can't feed himself, dress himself, bathe himself, well you get the idea. Argh!
Diane, remember several years back when we had the big discussion about when we first saw symptoms. Some of us, at that time, saw them 10 or 20 years ago. For me, we are about 14 years right now since I can recall seeing the weird things start happening. We are undiagnosed FTD/Picks. I'm sure that things started in his early to mid-fourtys. We are at 59 now.