Welcome to my website. My sincere apologies for not responding to you and other newbies more promptly, but if you have been reading, you are aware that I am in the middle of a move and currently living out of boxes. And my desktop isn't working, so I am on an old, slow laptop until my computer expert gets here on Saturday.
I started this website in 2007, because I couldn't find anyone who would talk about how I felt - I thought I was the only one feeling the way I did about what Alzheimer's Disease was doing to my marriage. I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. This site is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member".
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
After a 12 year battle, my husband died of Alzheimer's Disease on June 15, 2015, just 3 months ago. Since that time, I have been so deep in grief that I have not written many blogs or participated in the website as much as previously. I ask for your patience as I navigate through this difficult time. I can assure you, as others have said, any topic related to marriage and Alzheimer's Disease has been discussed on the boards and written about by me, so please use the "search" features on both the "previous blog" section on the home page (www.thealzheimerspouse.com) and on the top of these boards to research anything and everything related to being an Alzheimer Spouse.
So sorry you have to be here, but you have my sincerest welcome
I'm not sure if I'm entering this correctly, but I guess I need to try. Husband was diagnosed last month with early stage. He is despondent over not driving and seems to be sliding into a depression over this loss of independence. I am struggling to keep things going on my own as we don't have family to help out. I'll stop now and wait to see if this post is in the right place or if I should use another discussion. Sorry..... Not too experienced with messgae boards.
Your doing fine. Sorry you have to join our group but this is the best place. Someone will be here to share with you about us. There is lists of reading here and so many very helpful folks. Keep sharing as it helps.
Welcome Lynn12345, There is so much information here, and people are so willing to share. You have definitely come to the right board. Having been where you are, we understand. Can you tell us a bit about you and your husband? My husband passed on July 8, 2015 in a LTC facility. He was home about 4 years after diagnosis. You will get a lot of information from the folks here.
My husband is 71 and I am 69. I had known that his memory was getting bad and there were moments of confusion but the diagnosis of Early stage ALZ hit me like a brick. I am still reeling from this but going through the motions of daily living. He is intermittently angry, depressed, and moderately happy... all within 2 hrs time. We have seen doctors, social workers, and have an appointment with an elder law attorney in a few months. We have no children and family is several hours away so I am pretty much on my own. I feel like someone hit my brain with a hammer and then squeezed my heart until it broke. I guess that sounds a bit melodramatic but that is how this feels.
We live in Maine but are heading to Fort Lauderdale for a few months on Jan 6th. If anyone has any suggestions or experience with activities in that part of Florida, I would love to hear from you. Lynn
Lynn, I'm sorry I can't help you with any suggestions relative to Fort Lauderdale, but if you're driving down we're in the Melbourne area, a few hours north of there on I-95, and would enjoy meeting you all. I lost my precious wife of 60 years to Alzheimer's disease in 2009, about ten years after we first began to notice memory issues, and seven or eight years after receiving a diagnosis of "probable AD". But take heart -- by dint of positive attitudes most of those ten years continued being pretty good years as we were able to find joy in things she could still do as she was forced to give up things and as I found it necessary to "compensate" more and more for her increasing deficits and work harder and harder at encouraging her participation in things she could enjoy like travel, hobby crafts, and especially singing which she had always enjoyed. Even weeks before she died, she still looked forward to harmonizing remembered favorite hymns with the Hospice chaplain on his weekly visits with her here at home -- so it doesn't have to be all gloom and doom as you're feeling right now.
Lyn, I''m in Maine - Blue Hill. I lost my wife to AD after 10-12 years (the * and date mean the spouse has passed). I got a lot of help from this site, as well as lots of laughs. We need to laugh or we'll end up crying. Fortunately, she was very easy to take care of and we were able to do many things which she enjoyed, including a trip to South Africa and to Italy after the diagnosis. Even as she approached the end, she was basically happy. I would be happy to meet you here in Maine. Where in Maine are you? I do get to Florida some - my daughter lives in Palmetto.
Gourd and Marsh... thank you for your kind responses. I am trying to feel more positive about the future and your posts certainly gave me food for thought.
Marsh, we live in Windham, Me which is just northwest of Portland. We spend the winter in Fort Lauderdale, Fl. We (I) will be driving down as we have an old dog who can't fly. Gourd, we won't be able to make a stop this trip but possibly on our way home in the spring.
Hi Lynn. From Leominster, MA. Now living in Port Saint Lucie, Fl. Joan-who started this wonderful site lives just around the corner from me-just off I95,
Hello Blue.... We too are originally from Mass but moved to Maine 15 yrs ago. Port St Lucie is a lovely place to be. We will be heading to FlA in 4 days.
Hi everyone. May I introduce myself. I am 70 and live in Massachusetts. I just discovered this website about a week ago, and been reading like mad. I feel I have found a family that can finally understand. My partner of 12 years is in end stage of AD and cannot be left alone. She remains as sweet as ever, for the most part, as long as no one pushes or shoves her (trying to put a coat on her in winter is a challenge beyond comprehension.) Her ability to comprehend what is being said is diminishing daily. We are a lesbian couple, legally married in MA so I will use partner in place of DW if that is okay with you all. Love laugher and tears are all that is left for us. Memories aren't shared anymore. I used to be able to pull them out of her, but they are locked up somewhere inaccessible to me now.
This is a wonderful website, and it will be lifeline for you, as it has been for most of us. So sorry to hear about your partner. The folks here are very generous with their advice, and support. Good luck.
Hi Lindylou, Welcome to this website. We are in MA, too - Springfield area. Our spouses sound like they are at about the same stage. How long ago was your partner diagnosed? Are you still taking care of her at home? My husband was diagnosed 8½ years ago and has been in LTC for 1½ years. He is usually very happy and friendly but when someone tries to get him to do something he doesn't want to, he will get unpleasant. He does not understand much or make much sense. His memory is long gone - although he was one of 12 children, he seems to remember only one sibling (long ago deceased) and his parents. He always recognizes me although I can't say he knows who I am.
My partner has been forgetting things for about six years, but her neurologist refused to diagnosis her, because "that would be the end". Well I know better than that. The end is only beginning. She has been on a significant and rapid decline since last June with no sign of reaching a new "plateau". The decrease in understanding what is said to her, or to make sense when she is talking to me is the most recent decline. I was fortunate enough to be able to enroll her in a PACE program, Worcester MA and environs being in the area in Massachusetts covered by this program. It is an all inclusive program with both day care and home care offered. I feel very fortunate. But it is still very very hard. Thank you for welcoming me.
It's very very hard to go through this with our partner, we all agree. We call this the club nobody wants to join and whether we're male or female, all who join feel the same pain.
Lindylou, A number of people on this site have mentioned the PACE program. It has just recently started up in this neck of the woods (I think it started in California) and many people here have been asking about whether families are satisfied with it.
It seems kind of strange for a neurologist to refuse to diagnose for that reason but it is true that many people see the diagnosis as a milestone, even though they pretty much already know what the problem is. That certainly was the case for me. Even though I knew in my heart what was wrong, I fell apart when my husband was diagnosed and have never really recovered from it. I agree with Wolf. No matter what our individual circumstances, we all live within the same tragedy. That's why this website is so helpful - the people here really understand.
Myrtle, I found the PACE thread and indicated my willingness to share my experiences with the program. For my partner and me PACE has been very helpful and has made it possible for me to survive as a person and still keep my partner at home. But there are things for people to consider before enrolling.
Welcome, DocBog. I lost my wife to AD after 12 years. The * and date mean spouse passed on on that date. I was her sole caregiver until it got to the point I needed help. Then I started hiring people to get her up in the morning and put her to bed at night. Ask any questions you want and someone will have the answer. If you would like to ask more personal questions (although nothing except politics and religion is off-limits) my e-mail address is in my profile.
Thanks for the welcome. I have done a lot of reading and I can relate to the effect on the caregiver's life. In my case caring for my wife is like caring for a 2 year old. Herlucidity is constantly changing, her verbal communication is very limited. She will start out "I told yo..." then is all gibberish - very frustrating for me.
Welcome DocBog, This is a wonderful site with so much information that will help you. My husband passed almost 7 months ago, and I don't know how I could have made it without the advice and support of these wonderful people. And even after, there is still advice.
I am also newcomer to this site and want to welcome you. It is good to be able to share events, stories, questions, frustrations with others who are going through the same issues, and sometimes in addition to not feeling so alone, you also get suggestions and help that makes a big difference. Sole caretakers can feel very alone.
Welcome DocBog, I'm one of those that found this site a while ago but initially just read it for advice and information. I only started posting in the last several months. I found this site, and the people on it, to be a god-send! They are full of compassion, empathy, advice and counsel and are the most non-judgmental, supportive group who truly can understand what you are going through and provide real, practical advice because they live it or lived it everyday.
I'm a new member of this site. My wife has had dementia, comparable to stage 6 Alzheimer's disease, for about three years now. I'm her primary caregiver. We're both relatively young, in our early 50s, and I have a full-time job. I have professional help stay with my wife while I'm at work.
I've already gotten involved in a conversation on another message board, and I've been happy to exchange thoughts with others here who understand the situation and who write with such insight and kindness. Thanks.
HI RSA, I'm glad you are finding the benefits of this site. I'm sorry this disease has hit you and your wife at such young ages. There are several people who are still working here. I am one of them - I'm self-employed - but my hours dwindled way down after years of in-home caregiving. My husband is now in LTC; he's in Stage 7. Best regards.
Hi newbie here. I cannot tell you how happy I am to have found this site. I have been browsing the message boards and am so happy to hear voices that sound like mine. You all have let me know it is all right to be frustrated and even angry sometimes I was feeling so guilty. My husband was officially diagnosed with Alzheimer's about 5 years ago but upon reflection it started much earlier. I am the full time caretaker and see no change in that coming so I will continue to try and remind myself it's the disease and not him I am really angry with.
Welcome Cathy 120. I am a relative newbie, (since January) and have found this site to be a lifeline to sanity. You will find a very supportive community of fellow travelers here who do understand, know that frustration and anger come with the territory and will share experiences, advice and (most importantly) the care that all caregiver spouses need. The current contributors will become friends, I've found). The old threads hold a wealth of experience and knowledge. Welcome again.
Cathy120, Glad you found this site. It's been a lifesaver for so many of us. The anger issue is something I am not proud of. It seems I was impatient and angry a lot of the time. there are treads that deal with this and lots of other issues. Or start a new thread with your current concerns and someone will be along to speak to the issue,
Hi Cathy120, I doubt there is a person on this site who has not lost their cool when their spouse does some nutty thing. It's just human nature. Im not surprised that after 5 years, your patience and good humor have worn thin. Welcome to this site.
Hi, I am new on the message board but, have been a "lurker" for many years. It's close to 8 years since the dx for my husband, but, it took over a year to get the dx so in total 9+ years of dealing with this disease. I am the full time caregiver, and I too have struggled with anger at him and the disease, and anger at the world for ignoring us in this situation. In Ontario (Canada) it is the government that has control over who goes to a longterm care home, and there aren't nearly enough homes for the avalanche of dementia cases. I can't afford to put him into a private home, so I have another year or two before his name comes up on a placement list.
I am 64 years old. I had to quit working 4 years ago to take care of him, now I worry who will take care of me since I can no longer earn a living and we have been living off of savings for the past 4 years. He has some savings but, he had to quit work at age 59 because of the dementia.
It's not just being a caregiver of a stage 6/early stage 7 dementia patient that is so difficult, it is all the plans and hopes and dreams for our future that we have been robbed of. No wonder caregivers are angry. Only our most loyal friends still come around. It is my family that I get the most support from because his family, is either too busy, or just don't want to deal with it.
Welcome to the site Cheryl. Sorry that you're facing this but there are supportive people here that have also been through it and as you already know, this is very difficult to go through.
Hello everyone, my 51 year old husband was just diagnosed several months ago with early onset AD. Looking for others in the same situation, I feel all alone since none of our family or friends can really understand what this means. Anyone else out there?
Welcome Chryl1265. Sorry that you need us but glad that you found us. You should find lots of support here.
Some of us are dealing with younger onset dementia. I am 56 as is my wife and we have a 19 year old son at home.
When you are comfortable I hope you can describe some of your husband's symptoms. Based on his age I am wondering if it really be Frontotemporal Dementia (FTD). FTD is often misdiagnosed as Alz which can lead to prescribing incorrect medications and/or recommendations. Getting a proper diagnosis of any dementia can be difficult.
Have you been able to do the basic legal stuff: Power of Attorney (POA), Durable Power of Attorney (DPOA), Medical Power of Attorney (MPOA) and wills. Is your husband still working, and if you, is he on Social Security Disability?
Hi, Cheryl1265. My wife is 51, and she has had dementia for a few years; it's now comparable to late-stage Alzheimer's. I understand the isolation, as do others here. Online at least, you're not alone.
Welcome Cheryl1265. I was 52 when my husband was dx'ed. He was 56 but had been showing signs for a couple of years. He was misdiagnosed for a few years. Turns out he had Lewy Body Dementia. He had a lot of the Parkinson's like symptoms. He was always very pleasant and easy to manage thank goodness. But as he declined I remember how the walls started closing in and the desperate isolation I felt.
Hi Cherl1265. Welcome to this website. You will find supportive friends here when you share your needs, anger, and pain. We are all in a hard place, and thus we truly understand. You'll find my intro a little further up the page. My partner began her descent into AZ when she was in her 50's. She's turning 65 this summer.
The questions that paulc is asking are very important, and need to be addressed very soon, if they haven't been.
Welcome Cheryl1265. So glad you found us on this website as it will be a life line for you as it was for me. My husband is gone 1 year tomorrow. The grief journey has its own characteristics but do feel free to share all your feelings here as time goes on. We do indeed understand and you will get good suggestions on how to handle problems as they arise.
Hi Cheryl1265. My wife was 53 at diagnosis and that was 3 years ago. She was a school teacher, very strong personality, headstrong, etc. As you feel comfortable, it will be great to share experiences...especially in the very early years of this adventure.
Hi, my husband was diagnosed with early onset August of 2015, he was 52. I can now look back and see the signs, but at the time we were told he had a vitamin B deficiency and to take more B vitamins along with coconut oil. Nether worked, so we kept pursuing. We met with a neurologist who gave us the distinct impression he did not believe my husband had any problem. We were then referred to a fabulous neurologist at Harborview in Seattle! After several evaluations and then a PET scan it was confirmed he has early onset Alzheimer's and it is at the moderate stage! In the last year he has seemed to gone down hill at a significant rate. I would like to know if anyone here could tell me if this is "normal" for someone of his age?
Waning Moon I lost my wife of 60 years to late onset AD almost seven years ago, so I'm no expert on early onset, but I can steer you to information about it on Joan's Alzheimer Spouse website -- go to http://www.thealzheimerspouse.com/EOADsidetopic.htm. Hopefully some other folks will come along who can tell you about their experiences with rate of progression, but extrapolating their experiences to your own case isn't a certain thing by any means. You have my sympathy -- in my own case, my wife and I were fortunate in being able to enjoy a decade or so of happy retirement before AD entered the picture significantly.
Thank you Gourdchipper! My husband and I have been together for 9 years, however legally married just 1 month before his diagnosis! We truly thought the problems he was having would be something fixable. Alzheimer's was not even in our thoughts. Even after the diagnosis I know I was in denial. I kept hearing friends tell me how hard it will become, but in my mind I thought "How hard can it be caring for someone you love?" WELL, each day I am discovering how hard it truly is and just what they meant!! I feel guilty saying that, but with his fast decline, it's hard to adjust! I know everyone here has gone through the same thing and I am so thankful to be able to be on a site with people who know! I am just surprised at the speed his disease is progressing.