First of all I want to thank you and your son for all the work you put into making this board. I love the way you have improved it. My husband is the middle stage of Alz and sometimes he doesn't know who I am. As I stated before on some of my posts that I have no other members of the family close by, and some of our kids really have no clue what Alzheimer's is all about, so they really don't want to talk about it. This board is my life line. I am trying to take it one day at a time, but sometimes it is really hard to do. I also worry about what comes in the future when I get to the point were I really will need help with caring for my DH. I want to take care of this while I still got my wits about me. Well enough of that. Just let me tell you again, thank you Anne
I agree with Ann. This is much better. I read more than I post these days. I have been pretty down. Hubby is only in early stages and on Aricept and working his way up to 20mg of Namenda per day. His neuro is treating him very agressively . I see little things like the short term memory loss and repeating things over and over. But like Anne, most of my family doesn't understand so they just don't talk about it. My son says I am exagerating. I worry about the future everyday. I know sometimes I watch for changes too hard but I can't help it. Also the cost of the drugs are going to kill us. HE has pension and SS but I am not employed now. Since I quit my job to take care of my Dad with dementia. After he passed away I just couldn't get another job. Our credit is in the dumps and there is not much of any financial security for the future right now. I try to stay positive but it is very hard. Especially when I read the heartbreaking stories on the board. I know I am not there yet but will be.
Anne, You're so welcome - I'm much happier with these boards, too. Even I couldn't navigate the old ones when there were so many posts. I used those in the beginning, because it was what the host server offered, and I wanted them up right away. Once I got the other technology worked out, I went to work on these. joang
I'm going to start a new discussion topic on families and others thinking we are 'EXAGGERATING". It is a big problem but I don't want to write about it under the "thank you joang" topic. Click back to discussions to see it.
I want to thank JoanG for starting this website. I found out about it from my support group leader. My husband of 40 years is now in a nursing home, since Feb. & he is in the end stages of this horrible disease. He was diagnosed in Mar. 2005, but definitely had symptoms for several years before that. One of the most frustrating things was trying to get a proper diagnosis. Even when I told doctors of his symptoms, mostly visual at first and he had 2 car accidents, one in which he totalled a Mercury Grand Marquis because he didn't see the truck he ran into; even after all that, the MRIs & CAT scans did not show any problems. When I asked one of the neurologists to order a PET scan, he told me it wasn't necessary! Strangely enough, it was an acquaintence at a wedding who observed my husband's behavior and told me he had Alzheimer's. This was about a year before he was actually diagnosed by a doctor! So it is really the people who are LIVING with the disease who are more competent than some of the medical profession. There is a tremendous misunderstanding of this disease. Most people, including myself, think (or thought) of Alzheimer's as a "loss of memory" disease. The truth is that it's a BRAIN disease. The brain which controls EVERYTHING that your body does, is being eaten away and destroyed. This is something I need to explain over & over to outsiders. My husband now has difficulty swallowing & has had aspiration pneumonia 4x since Feb. I find that many people do not "get" that this disease destroys the whole person & not just his memory. Anyway, thank you Joan...for providing a comfortable forum for spouses. Diane
To all of you, You are very welcome. I was in so much silent pain, I couldn't sit by and do nothing. I knew there had to be others feeling the same emotions as me, so I poured my heart out into this website, and the response has been so gratifying. My writing and reading your messages is my therapy.
I have many more plans for the website - more features and information. My next step is to get advertisers for it, so I can make it a full time job.
You are so on target about no one understanding what Alzheimer's is, including me. Check out the section - previous blogs - to the left of the website, and click on "Alzheimer's - not what we expected." The "Welcome Blog" also addresses this issue.
I, too, thought it was progressive loss of memory - PERIOD. I had no idea what else was involved, so it's a constant learning process and struggle.
However, because I am well aware of the outcome, as I tell my readers constantly, I take one day at a time. If I dwelled on what is ahead, I wouldn't be able to function. I enjoy the good days and deal with the bad as best I can.
I hear what you are saying about getting a diagnosis. It is truley unfortunate that this typically takes many years and most patients are in the mid stage of the disease before doctors say it's AD. In my husbands case I had his neuroligist give it to us after two months. I wanted him on med's as soon as possible. I was warned from others that "how will it affect his abiality to get insurance" and "why don't you wait it could be something else". I know this is hard for a doctor to give such devistating news but it is a relief to caregivers that spend years tryin to figure out what is wrong with thier spouse. We all must be proactive and look out for the best intrests of our husbands/wives.
So sorry to hear that your husband is in a nursing home. Well to this site.
Thought this would be good to get back in discussion. I, too, am grateful to Joan for putting this site together. I just post and read on this one now. My husband was 2 years getting a diagnosis from the neurologist. lmohr
It isn't only the diagnosis - when life is through - doctors just can't seem to get it. They are too much in to the cure or 'fix' mode. I had an extremely difficult time getting anyone to consider that my DH was a candidate for Hospice. I hope they reconsider now that Hank went to Hospice on Friday and started the dying process on Sunday - or was that Saturday? Joan,I am so indebted to you for this site. No one is really interested in the details, except in this group where we are all on the same sinking boat.
I too want to thank Joan and all the posters. I have been lurking for a couple of weeks now and this is where I come often just to read. I feel so much better knowing the things that have been driving me crazy happen to other caregivers too. My husband was diagnosed at age 63 in 2006 but I know the signs were there at least 2 years before. He seems more confused each week. I had to smile when I read the post about compulsive behaviors. As I was reading it my DH was picking something off the rug and carried it out to the garage to throw away rather than a basket in the house! I've learned not to comment, but sometimes it is so hard. Thank you, Joan, thank you.
Hello Apricot, welcome. And yes, thank you Joan...this site is a lifesaver and a sanity saver. Thank you to all the brave souls who get up every morning and try again and are willing to share their experiences here. Bless us all on this brutal journey.
Welcome Apricot! I've been on this site for about a month and have learned more about the behaviors than I could have EVER learned from a book. The folks here are wonderful and very supportive--even if you're having a really 'bad hair' day. I've had a few and have been supported all the way!
Joan, don't know how I personally could cope without this place. Thanks so much!
Welcome Apricot - love that name. We can never thank Joan enough for starting this website. It has been more help to us than anything we have ever read.
Welcome Apricot- I too am new. I sure hear your concerns. The memory issues were minor compared to the other behaviors. I get so frustrated with the apathy. My DH sits nearly all day and watches that aweful TV. The other thing that bothers me is the lack of awareness of what is happening to anyone else. It is so unlike him. I think that is what has been keeping my children from accepting the diagnosis. They are not around him enough to see the memory problems. They think he is just getting old but he is only 60!!!. My children think I am exaggerating and have even said that maybe I was responsible for his behavior, that maybe I am not paying enough attention to him. You are so not alone...we understand and I know you are not exaggerating. Welcome and let it out, it will help more than you can imagine.
Thanks everyone - I say it all of the time, but I mean it from the bottom of my heart - you help me as much as I help you.
sandy D - go to page 30 of this dicussion board, and you'll see a topic - Everyone thinks we're exaggerating. It is SO common in the beginning. Also, click on the previous blog section on the left side of the website, and read #29 and #254. Those are just two of the blogs that deal with this subject.
Our first neurologist ( who did NOT specialize in Alzheimer's Disease) told me that it was ME. I was "projecting" what I saw in school with Special Ed. kids onto my husband. Until they are sitting in a chair, totally oblivious to the world and unable to speak, no one sees anything wrong with them. It's always US, our fault, our imagination, our lie, our drama, our everything. Yup. It's frustrating.
sandy D please don't fall in the trap of accepting blame for any of this. If you had been aware of what was coming and started treatment earlier you would be in exactly the same spot as you are now. There are no "what ifs" in dealing with this monster.
Admin- I read the blogs and discussion on page 30. I feel like a huge burden was lifted from my shoulders. Wow, it is like you wrote from my mind and my experience. I find it odd that my 10 year old has noticed but his mother has not. He asked my husband a question-(he was laying on the couch watching TV again) and then my grandson asked me the same question. I commented to him that his GF just answered the question and his comment was " but sometimes Papa doesn't make sense and he just woke up from a nap so I thought I better asked you for the real answer". Out of the mouths of babes. I am so glad to know I am not crazy (yet) and I know this is going to make it easier for me to focus on the important things...my DH.
This is an excerpt from the sermon I heard this morning, but it is not religious. It reminded me of what Joan has done and is doing for all of us and to shine light on issues related to Alzheimer's. So this is a thank you to Joan - and maybe a challenge to all of us - at least to me.
From the sermon:
In closing my remarks, I want to share something from Robert Fulghum, who tells one of my favorite stories in answer to the question in his book It Was On Fire When I Lay Down on It. The story is about a time when he was a younger man, studying Greek language and culture in Greece for the summer. Alexander Papderos had founded an institute devoted to healing the wounds of war on the island of Crete. At the end of a two-week conference Dr. Papaderos asked, "Are there any questions?" And Fulghum, half-jokingly, asked, "What is the meaning of life?" Papaderos said, "I will answer your question," as he pulled a small round mirror out of his wallet, and said these words:
“When I was a small child, living during the war [WWII], we were very poor and we lived in a remote village. One day, on the road, I found the broken pieces of a mirror. A German motorcycle had been wrecked in that place. I tried to find all the pieces and put them back together, but it was not possible, so I kept only the largest piece. This one. And by scratching it on a stone I made it round. I began to play with it as a toy, and became fascinated by the fact that I could reflect light into dark places where the sun would never shine - in deep holes and crevices and dark closets. It became a game for me to get light into the most inaccessible places I could find. I kept the little mirror, and as I went about my growing up, I would take it out in idle moments and continue the challenge of the game. As I became a man, I grew to understand that this was not just a child's game but a metaphor for what I might do with my life. I came to understand that I am not the light or the source of the light. But light - truth, understanding, knowledge - is there, and it will only shine in many dark places if I reflect it.
“I am a fragment of a mirror whose whole design and shape I do not know. Nevertheless, with what I have I can reflect light into the dark places of this world - into the black places in the hearts of men - and change some things in some people. Perhaps others may see and do likewise. This is what I am about. This is the meaning of my life." And then he took out his small mirror and holding it carefully, caught the bright rays of daylight streaming through the window and reflected them onto my face and onto my hands folded on the desk.
Thank you. There are so many of you out there who are doing your part. Check out this blog -http://www.thealzheimerspouse.com/Cahill1.htm - on our members who are "shining a light on Alzheimer's issues." Since that blog was written, I need to add Marsh to the list - he is a retired physician who is enlightening the medical community on AD. I apologize if I have left anyone out.