Hello everyone. My name is Robin. My husband was diagnosed in January with progressive dementia, later changed to Dementia with Lewy Bodies because of the other symptoms he has. He is 46. I have to keep this intro short because I am currently overwhelmed but so very glad to have been directed to a place for spouses.
Welcome Robin - there is a lot of valuable information on this site, as well as encouragement and caring. Feel free to vent, ask questions, whatever you feel the need for!
Welcome Robin, you both are so young to be dealing with these horrible diseases. Visit often, as bdq says. lots of valuable info here and a lot of support. We've all been through what you're going through. Lean on us, we'll be there.
A big welcome to you, Robin. I am so sorry you have to be here - but glad you found this life-saver website. You will receive much support and information from those of us 'who have been there' or are still there.
A new member, darlenegail, posted this in another thread, but I transferred it here. I hope others see it and welcome her here. Darlene - my welcome is at the end of this post.
This is my first post and I must tell you that your comments fill my heart knowing that I am not alone on this journey. My husband, Chuck, is in the moderately severe stage. This holiday season was so difficult as I put the x-mas decorations around the house, something we have always had such joy in doing he sat and watched not participating.
And then came New Years. No understanding of the holiday and to make it worse for me, it is my birthday. He doesn't know that and I feel alone.
This is a journey I don't feel anyone deserves and like Joan. I want him to be a peace not feeling ashamed because he can't find the right words or finding it difficult to dress or fix a meal.
Bless all of you.
Another new member, morgancastle47, posted in another thread, so I would like to welcome her also.
darlenegail and morgancastle47,
Welcome to my website. If there is one thing I can assure you both of you, YOU ARE NOT ALONE on this journey. 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" and "Understanding the Dementia Experience".
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.
Welcome. You have come to a place of soft landing and understanding.
Hello, morgancastle47 and darlenegail. Welcome to these forums. I think you will find that the people here will offer support, encouragement, and good, common sense advice that you will not find anywhere else. I'm sorry that you both have to be here, but with all of us working together, we can get through this…wherever we may be on the journey.
Darlene Welcome You have come to the right place for support. They are great and understanding because they are doing this journey as well. No lectures just our own stories. Below is one of mine.
I have decided to down size on Christmas decorations. My DH can't help anymore. Our anniversary was in December and this year I made reservations for us at a nice restaurant and told him we were going and what time I would pick him up at the LTC. He asked why we were going and I told him it was our anniversary and he was so happy I had reminded him and that I had not let it just go by and feel bad. I learned a lesson and it was to remember he can't remember and I have to help him remember. We had a good time. He went back to the residence and when I went in to visit a few days later everyone was telling me how he was so happy he was able to take me out for our anniversary. That's my latest lesson on being a dementia caregiver and there have been lot and will be more. There are others who will come to wlcome you. Each of us is on the same but different journey. Ask lots of questions.
morgancastle47 and darlenegail I extend a hearty welcome to both of you. You have joined a caring site that will be supportive and understanding without judging. Ask any question or just vent if you feel the need, We will understand and we care.
Hi, everyone. I just joined today and have been looking around at the many many threads -- so much good information and support here. I'm Rosella, and my husband was diagnosed about 1 1/2 years ago with Alzheimers. He is almost 90 now, and I am almost 78. We are still in our home and managing pretty well. So far (knock wood) we haven't encountered any dramatic symptoms, although his comprehension and organization are both getting worse. He is also DEAF, which makes for some lively conversations.
I am probably putting this post in the wrong place -- please forgive me, as I learn my way around!
Welcome rosella, you are in exactly the right place. As Charlotte said, sorry you need to be here but it's the only thing that got me through the journey. As you probably know from reading previous blogs, the * means that our spouse/partner had died. If there is a date after the * it is the date of the death.
I knew my DH (dear husband) had problems after we moved to a new state in 2007. It wasn't until the summer of 2010 that he was diagnosed. We had several hectic years and in September 2013 he went on hospice. With their help and reading this board and a couple of paid aides each week, I was able to keep him at home until the end.
Hello. My name is Dellwyn. I found this site by looking up information about Alzheimers. My husband was placed in the nursing home from the hospital in January. He had not officially been diagnosed and I was very shocked to find out that he has this disease. I had seen a lot of the signs but chose to pretend they were not happening. After he got the flu and pneumonia in January he seemed to go completely out of his head. The dr told me he was delirious and that it would get better, but it did not. It got much worse and now he has gone down so much that I could not take care of him He has to have 24 hour care. It breaks my heart. I am glad that I have found this site. I have friends who have called and supported me but I feel so alone. We have been married for 36 years. He is 80. Since I have been reading these posts I have been surprised to find that there are so many similarities in our stories.
Hi I am Ron and my wife is Lisa and this is my first post. She was diagnosed with Alzheimer's in May of 2012 just around her 56 birthday although in hindsight it had been going on for a long time. It is hard to get a diagnosis when you are young as I am sure you know. We have been doing well keeping active and social I feel that I have been pushing her to do so and she is a trouper. We are Lucky as we were able to retire early. We have a good group of friends but very few close as we moved to a new community about 5 years ago. Unknown to us she was already showing signs, we thought it was stress. So getting out and making new friends was hard.
At our last specialist meeting in the summer I asked where we were at and the response was late stage 5. I can no longer leave her alone and know that I need help but she is against it. This will be difficult for me but I know I need to do it. We are at the point that I have been dreading. There are no processing skills left and I am seeing small signs of her physical deterioration and know what is coming.
Welcome. Your history with Lisa resonates with me. My husband was dx at a very young age. To be specific, he had FTD and so was not staged.
Yes, it can be very difficult and more than exhausting to seek a dx at a young age. I can understand, to an extent, that doctors do not want to accept dementia in someone so young. My husband saw a neurologist, research neurologist, two neuropsychologists, and a neuropsychiatrist, all following attempts at the general medicine levels to determine what was happening to him.
As I did, you will find understanding, knowledge and compassion here. We're here to listen, support and help.
Hi Ron, my husband was diagnosed at age 56 also. If you have gotten to the point where you realize that you need help then please get help. I, as so many here also, waited too late to get help. I am an RN so I knew I could handle anything that was thrown at me. I found out that it is impossible to care for someone and be "on guard" 24 hrs a day. It is amazing how fast they can decline. Mine went from sleeping all night...manageable...to up and down and falling all night. He didn't want a "babysitter" either. But, he was also unable to realize what the 24/7 care was doing to me. I started using hired caregivers until he was placed about 4 months ago. Please don't let the disease take both of you. Welcome to this site...it has been a lifeline for me!
Hi Ron, welcome to this group. You will find so much support here. Know that each persons situation is different. When I placed my husband I felt as if I had abandoned him but it was to the point where I could not leave him alone either and I decided it was either going to be me or him. We have to save ourselves in whatever form that takes. Some people hire help to come in and others opt for placement. I chose the latter as I have a small condo and did not want people in and out all the time. You will know what to do and we are here to support through it.
I first had help to come in the house by telling DH (dear husband) that I was getting someone to help with the cleaning. That worked, and he was soon used to her being there twice a week.
welcome to all the new members. its been awhile since I was able to post as I just got my new laptop. using the iphone keyboards is very hard. at any rate, those of you new to the site will find much comfort knowing so many have been ahead of you, and many to follow. we learn from everyones own personal input. there is a lot of similarities on how the disease progresses but then each victim it claims has their own set of challenges. a world of wealth in older threads here as well. may you find peace and new friends here that know exactly how you are feeling and want to offer help and understanding`- divvi*
Rona Being use to being open and making decisions together it is hard to have to do something I know Lisa is against. However I know I have to do it. I have billed it that I need help she understands that on one level but then feels well she is fine and can just be on her own. We are currently away in our rv and I am dreading going home as I know changes need to be made. Prior to leaving I met with an in home support worker, RN, very nice and a perfect fit also she came to the house to Meet Lisa and we chatted planning on having her come once a week when we get back just to give me a break.
Anyways thought it went well but after she left Lisa went ballistic. She hated me, I lied to her etc etc. Not easy. And things have deteriorated for Lisa while we have been away. Seems to be moving very quickly.
I have been quite behind on welcoming new members, and for that, I apologize. As many of you who have been reading already know, 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" and "Understanding the Dementia Experience".
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.
Gaginny, You have your hands full with PTSD and FTD. There is a lot of information here on FTD, but not so much on the combination of PTSD and FTD. Please keep posting and asking questions. There is always someone who can either answer you or point you in the right direction.
CrankyPants, I placed my husband a year and a half ago, and I am still feeling the trauma, although have received much help from a grief counselor. My point is NOT to make you feel worse; it is to let you know that we all go through a myriad of emotions during placement. Honestly, the "sticky" thread above - Caregiver Life With Spouse in facility" has been of great help to me. I would suggest reading as much of it as you can. The main point of this website is to let Alzheimer spouses know that they are NOT ALONE in all of their conflicting emotions and thoughts. For a good insight into emotions related to placement, read my previous blogs dated from July 2013. ( Home page - www.thealzheimerspouse.com - left side is "previous blogs". Click that - everything is arranged by year.)
Rosella - You have posted in exactly the right place. It is easier for me to find new people in the beginning, and later if I need to reference something they have said, if everything is in one place. Yes, there is a lot of good information and support here on the message boards, but don't forget about the home page - www.thealzheimerspouse.com. My blogs are personal experiences with which all Alzheimer Spouses can relate at one time or another during their journey. They are also often informative articles on all subjects related to Alzheimer's Disease.
Rona and KarenK - Please be sure to log onto the home page - www.thealzheimerspouse.com - and read the EOAD (Early Onset) blocks of information on the left side of the website. You can also find supportive information related to EOAD on these message boards. Go to the top and click "search". Type in EOAD, making sure the "topic" circle is filled in, and click "search" again. All of the EOAD topics will come up. On the home page, in the block that is titled "previous blogs" type in EOAD, and the blogs I have written related to EOAD will come up.
And in case anyone has missed it - my general greeting explains how and why this place exists - As many of you who have been reading already know, 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" and "Understanding the Dementia Experience".
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.
Feel free to start a new discussion on any Alzheimer Spouse/Alzheimer's/Dementia topic that interests you. We are here for support and understanding.
You have taken on a lot of responsibility trying to welcome so many new people to your site. I'm totally amazed that sooooo many are experiencing the same predicament. Reading many of the discussion board comments has brought tears and yet comfort in knowing that we are not alone. My prayers go out for each and everyone experiencing the pain associated with this disease. My intentions are to become involved in many of these discussions. My wife Millie has had dementia now for almost ten years. We recently lived together in an assisted living facility for a year and a half. For the past three months she has been in an Alzheimer's care unit...I live very close now in an independent living apartment. Thank you so much for providing this outlet and source to help us deal with our concerns. BillFlot
welcome Bill. there are several men with wives in facilities like y ours. glad you found this place to learn and vent. some of us have already left the roles of caregivers after decades of it and come back to check on those behind us. divvi* (the * behind a name means we have lost our spouse. hope to read your posts soon.
Welcome to my website. The post right above yours gives the general greeting and information about how the website was started, so I won't repeat it here. I do want to say to you that we have many men who are members. Although they are somewhat quieter than the women, they always have something valuable to contribute, and I do believe they feel safe posting their emotions here where they know they will get understanding and support.
You may want to look through the "sticky" (meaning that it stays at the top) thread for spouses who have had to place their husband/wife in a facility. Honestly, I have gotten a lot of support from that thread myself. (I placed my husband a year and a half ago, and am still trying to adjust to it).
Be sure to check in on the home page - www.thealzheimerspouse.com - often for new blogs, news, and the website's resources that are on the left side.
Hi! I am Oregramma. My husband of 46 years has been recently diagnosed with probable AD. My life has become a living hell. Two years ago he began lying about me to our entire extended family, telling them I'm crazy and should be confined to a mental hospital. I was evaluated--but other than anxiety, the doctor found no mental disorders. Nevertheless, my family has estranged me, and I've lost contact with our adult children and grandchildren. They believe he's fine, even though he's been diagnosed--they say I drove their father crazy. My husband abuses me daily in one way or another; I never know what to expect. I lock myself in my room to stay safe. I worry what might happen next. Our finances are in disarray--I have NEVER been privy to financial information. I don't know this person I'm married to anymore, and I'm scared, lonely, and don't know what to do. I'm glad I found this website.
Welcome to my website. First, let me say that what you describe, although a definitely horrible situation, is not uncommon. My family thought I was over reacting, exaggerating, and just plain nuts for at least the first 4-5 years of symptoms, even after the diagnosis. Unfortunately, until the symptoms become so obvious and impossible to ignore, other family members will continue to be in denial.
You, however, need some help in dealing with Alzheimer's Disease and your changing marital state. First, 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" and "Understanding the Dementia Experience".
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.
Next, call your local Alzheimer's Assoc. chapter and ask for an appointment with a social worker. Explain the situation and tell them that you need to learn all you can about dealing with this disease, and you need emotional support.
Also, any concerns or questions you may have, please ask here on the message boards. Look on upper left side where it says "start a new discussion". You can title your discussion whatever your concern is. Or you can look up your topic at the top of this page by clicking "search".
Hi, I am Carol and I am new to this website. I am the spouse of an Alzheimer's patient. Jerry was diagnosed about 1 1/2 years ago and when I heard the diagnosis, I freaked out. Jerry and I have been married almost 10 years and he is 18 years older than me. He is 74 and he and his family are in full denial of his disease even though they were all present when the doctor told us.
Jerry is still in the mid stages but his short term memory is going fast. He gets confused all the time about everything and I have had to quit my job because three different times, I've come home to a house full of smoke because he left a pan on the stove and he was oblivious to the smoke. He accused me of lying about it.
I am now his sole caregiver. I do everything in the house. He still mows the yard and gardens but I do everything else. He no longer drives so I drive him to the gym and to church. He still rides his bike and takes long walks around the neighborhood, but I am concerned he isn't safe doing that. I'm putting off fighting him about it, it's his last true freedom.
We have gotten all the recommended legal stuff taken care of for both of us. He has a bracelet for Safe Return, if he gets lost. It's kind of a small world for me. I love him and will only put him in a home if he becomes aggressive or something like that, but the life I imagined for us is gone.
Hi Carol, We have a lot in common. I am older than you are (66) but I'm 19 years younger than my husband. We were married for 16 years before he was diagnosed. I also freaked out. I feel bad that you had so few good years with your husband before this hit you. My husband is in the later stage (6-7) and has been in a LTC facility for 10 months. Like your husband, he was fit and had a lot of energy and when he was at home he was outside all the time. I had a GPS tracker on him and he went to day care several days a week for two years, but even with that, my world got very small. So I know a little of what you are going through. I hope you find both good advice and understanding on this site. I know I did.
Hi, I am Orchid. I am 66 and my 73-year old husband was diagnosed with "probable senile dementia" in 2011. Since that time, he has continued his very slow decline. He is still mostly early stage, but some mid-stage behaviors too. Since he has refused any further testing, we don't have an updated diagnosis, but his behaviors are consistent with Alzheimer's. His mother died of Alzheimer's and his younger sister has been diagnosed with it. We have been married 42 years, and he has three adult sons from his first marriage. My stepsons are supportive, but live far away and are busy with their own lives, so I feel very much alone with this. I often feel that I am losing my mind trying to deal with his irrationality and confusion. We are in the process of selling our house to move to a continuing care retirement community where I hope I can get more support.
Hello and welcome Orchid. Sorry for what you are dealing with. You have found a caring group of folks here who will be very supportive and nonjudgemental when you need to vent. This is not a club anyone wants to join, but many of us don't know what in the world we would do without the care and support we get here. One thing is for sure...we all "get it"!
I posted last night about our shorter journey thru dementia. My DH was 60 and I just turned 65. We met in 1972 in a college math class. He was starting college and I was returning from working in the real world. He was a buddy first and then we fell in love. Married in 1974 and no kids. He was my world. His career was as a locomotive engineer for 30 years in Eastern Oregon. The railroads work on rotary shift schedules and I wonder about massive sleep deprivation as a cause. One former engineer in our small town died in 2013 at 59 of EOAD. He was 1 month older than my DH and they started their careers together. At the NH where my DH was, another retired engineer was admitted in early March. This man looked great, talked great, walked great and then he would tell you that he needed to get to his train for work. Most of our friends have been supportive; a few just couldn't deal with DH's changes and I truly understand that. The only poem I learned as a kid still keeps me going..Robert Frost's "Stopping by the Woods on a Snowy Evening". My other mantra is " Blue Sky" by the Allman Brothers. I don't have to sleep with a cell phone on anymore and I really miss that..I miss being called in the middle of the night to go comfort my DH.
Welcome Keely. I assume you still live in Eastern Oregon. I live in Eastern Washington. I have a sister that lives outside of Madras and other family in Bend and Prineville.
Things are going downhill fast. Today DH is giving me the silent treatment for something, but he refuses to tell me what. I think we are just about broke--I've been trying to figure out our neglected finances, but have no help. Who could possibly figure out such a mess? I'm clueless about everything. And I guess I'll cry myself to sleep again. I have no marriage left. The adorable, funny, intelligent boy I married in 1968 has vanished; whoever is in his body now is no one I could ever like, and certainly would never marry. This disease is AWFUL!!!!!
Have participated in virtual communities for over 20 years and appreciate the capabilities they provide to communicate on specific subjects of interest
..and since my 63 yo wife of 30 years was diagnosed with EO Alz over 2 years ago, this is the subject of most concern in my life at this time
Coming down the learning curve, rapidly, as the realization grows of what we are dealing with here, the most stunning realization is that the medical community is virtually powerless to deal with this disease
..so any potential treatments for the cure or arrest of the beast is beyond the current capabilities of what the medical establishment can do
..but they have managed to develop several bromides for symptomatic relief only, currently featuring the recently renamed, to avoid generic qualification, Memantine, which we are dutifully required to purchase, as NamendaXR, at some $15/pill to help our loved ones
..what sweet blackmail
..and although we are encouraged by the daily report of a new finding that will explain the mystery and provide the hoped for cure, we all know that even if that is correct, it will never be available before our loved ones are gone
Enough rant
Appreciate the platform you provide
..and I would like to start a new board to trade views on what we are doing by way of supplements or any other strategy to do for our loved ones what formal medicine can't
Hi Metacomet, So sorry you have the occasion to join us on this site. I agree with that the drug companies are operating a racket and that the medical establishment, recognizing its own impotence but loath to admit it, is by its compliance abetting this corrupt scheme.
I tried some supplements but they did not work. Maybe someone else can suggest something. You might also want to use the "search" feature to find what's already been written. BTW, I love your screen name.
Metacomet, you are not "required" to purchase Namenda. This may be recommended by your wife's doctor, but you are free to refuse if you don't think it is doing any good. When my wife developed AD she was put on Aricept, which made her vomit for the first time since I had known her. Other drugs, including Namenda were tried, with no obvious benefit, so I stopped them all.
Metacomet, Namenda was recommended but I chose not to start it for my husband. None of these medications will change the outcome of the disease. My husband was started on the Exelon patch and I asked his PCP doctor to take him off which she did about 6 months before he passed. I never did think it did much for him and was a constant irritant on his skin.
marsh, I think Metacomet is talking about the fact that the manufacturers of Namenda are discontinuing the twice-a-day immediate-release version of the drug. They are doing this because its patent has expired and the drug can now be sold in a generic version. These drug companies (Actavus and Forest Labs) do not want consumers to be able to buy the generic version and want to force them to buy the once-a-day, extended-release version of Namenda (renamed Namenda XR), at a much greater cost (and, of course, a much greater profit to the companies). I think that the matter is now the subject of anti-trust litigation in a federal court in New York.
So what Metacomet is saying is that people who want to take Namenda, now available in a generic version, may not do so; instead, they are “required to purchase [it], as NamendaXR, at some $15/pill.”
Charlotte, That is true but the order is only temporary. It will remain in effect in order to preserve the status quo until the underlying issue (whether there has been an antitrust violation) is resolved by the litigation.
..but in my case, my 63yo wife has been diagnosed with EOAD, and maintaining as much quality of life as possible as long as possible is of paramount concern
..and when the professionals that you desperately rely on suggest that it may help in that regard, it is hard not to run to the drug store, script in hand..
..and then adding insult to the financial injury is the explanation that the Namenda does absolutely nothing to treat the causes of the disease.
..it may provide symptomatic relief..and given the array of what those may be, and the fear of encountering what we all know is waiting for us, sooner or later, it is simply a reaction to procure the pills, at whatever cost
..rearranging our budgets as necessary given the astronomical cost of these things