Welcome Gary, you seem to have figured out a great deal already, well done. Living in their reality is a hard learnt lesson but the only way to go otherwise you will end up completely doolally yourself. FTD changes their personality so very much and it is heartbreaking all the way.Keep reaching out for whatever support you can find, here or elsewhere. Not just for your wife but for you as well. That sounds rather negative, sorry. But you seem fully aware of the problems so it is nothing new to you. I will just add that there still will be some happy moments so grab them whenever you can.
Yes there are a lot of happy moments that we have. That is because I am living in her reality. I did not think I would have to do it after retirement, but such is life. The one thing I have found reading this board/forum, it is more women saying there husband, not the other way around. I did chat to one man, paulc, and his wife has it. Not to be socially incorrect, but is it perhaps doctors listen more to women as opposed to men? I don't know. I would be interested in your comments.
Hello everyone, My DH was diagnosed in August 2014. We were high school sweethearts and are now both 55. He seems to be declining fast. He asked me what a shoe was the other day; he didn't know what they were called. I am still working and feel incredibly guilty for wanting time to myself since I have to do everything. He goes to all day daycare and loves it which gives me a lot of piece of mind. Thanks for having this forum. It helps.
Hello Hestooyoung. I just joined recently too. My husband was diagnosed with EOAD a few months ago. Is it my imagination, or does it seem as though early onset Alzheimer's which is supposedly rare, is more common than people realize? And ah yes, guilt. I have a lot of that because I'm already wishing this was over.
Whether more are getting it or they are now diagnosing it correctly instead of some mental health issue. The same is happening for the older people too thanks to living longer. I still believe the increase is due to the stuff in our food, water and air supple destroying those more susceptible.
Welcome, Hestooyoung. A good name because he is too young. Much too young. I'm glad you've got him in daycare. It sure saved my life.
I'm not sure that EOAD is actually increasing but I do think that more people whose spouses have it are joining this website. I hope you will be able to get some comfort from their experiences and that they will get some from yours.
Hi everyone. I was so happy to find youze (Philly-speak). The main Alz.org site is just a little overwhelming for me. My dear, brilliant, kind, witty husband of almost 25 years (2nd marriage for both and BEST marriage in the universe) was diagnosed almost 3 years ago, a few months after my beloved mother died. It appears to be early-onset Alzheimer's, we've been shuffled around by providers and will finally see U of P's Penn Memory Care later this month. Not that it matters much at this point. My husband began to have noticeable symptoms early in his 60s; he'll be 68 on Tuesday. I'm his trophy wife (yeah, right!) of 63. Does anyone else think that EOAD moves more quickly than Alzheimer's that begins in old age? Because his dementia is moving so swiftly that it takes my breath (and heart & soul) away. I can't imagine how it could possibly get worse but. of course, it will. He has lost so much ground in the past 6 months that I wonder what will become of us. Neither of us have family nearby, we have no children and our friends are either still working or have drifted away (as I'm sure, we have too). We've hired a wonderful social worker and the first thing she did was determine that we could never, ever afford to to move to a community with Memory Care. On the plus side, I am so very blessed to have met the true love of my life and as I saw on another site tonight, it is my honor to serve him and give him back just a small portion of what he has brought to my life. Now, tell me, howz are youse guys doin'?
Welcome and sorry you had to join us but this is a great place for support and information. There is lots to read.
As for EOAD going faster - it depends on the person but it does seem those diagnosed in their 40s and 50s do go faster. Women seem to go faster, too. We had one woman on here whose husband was gone in 2 years. My SIL was diagnosed at 55 and died 9 years later. MY FIL was diagnosed early 60s and survived over 20 years. My husband was diagnosed at 60 (now 69) and is still chugging along. We just started year 10 of this horrid disease. You just never know.
Hi jeannebodine. I'm so sorry your husband was stricken with this disease at such a young age. Welcome to this site. I hope you will find both useful information and comfort here.
Welcome Jeannebodine. This is a safe place with no judgement just information and caring souls to help you through. Everyone here gets it because everyone here has lived or is living it. this site has been a lifeline for me as it has for many others. Good luck and visit here often you now have a whole team with you on this journey.
So glad I found this site. My DH is 70 and in stage 3 of FTD. The feeling of isolation is one of the hardest parts of this disease for me. We have 3 children and 2 of them live nearby. Our daughter doesn't want to talk about her Dad's health, thankfully her big brother is aware of what is going on. He lives across the street from us and talks to his Dad every day.
Tried to explain to my daughter that I lost my husband years ago to ED and now I am losing my best friend. Don't think she can handle her Dad's changes.
He has recently been progressing and this level is very obvious as he is becoming more confused and the periods of confusing things are happening more often. He started this around Easter and this seems to be the fastest he has progressed since we be came aware he had dementia.
Of course, like most of us that are older we both have other health issues to deal with. I am presently having physical therapy for my shoulder and knee (osteoarthritis in both). Trying to put off another knee replacement and next week see the spine doctor about my back.
Would I be terrible to say that after reading about what some of you are dealing with I realize I am fortunate because things could be a lot worse.
So glad to have found someplace with people who "get it".
Welcome to the site Martha. Everybody here is going through or has gone through the dementia of our spouse. I'm sorry this is happening or as we say - welcome to the club nobody wants to join.
Welcome, Martha. This website has been my lifeline this past year and a half. Please feel free to post when you have questions and need advice, when you need to vent and rage at life, and when you can give advice or support to others. We are all traveling a very difficult path, but we are traveling together and helping each other.
Martha, welcome to this safe spot where you will find so much help. Sorry you have to be here. As I approach the two-year mark of losing my husband, I seldom comment anymore, but there is a very faithful core of regular contributors who can inform, guide and encourage as you move down this path. You are so fortunate to have your children nearby. I wish you strength for the journey.
Welcome Martha to a great place to land when going through these horrid diseases. Yes, things could be worse but don't 'grade' your situation against others. Sometimes trying to convince ourselves 'things are not as bad as others or could be worse' is a cruel thing many of us can do to ourselves. Some get peace with saying that, others feel more guilt. We all have our own threshold - what is a wall for one is not for others. When I was going through counseling for child abuse I learned the same thing can happen to people - one would be devastated by it, the other barely affected. The same is true as caregivers going through this disease (or any really).
Hi. Jim here. 70 years old and have been caregiver for my wife, 69 yrs. old for over 3 years. Started signs of Alzheimer's 9 years ago. She is very social and most don't even know unless you are around her for a while. I have to help her dress, cook clean etc. I have help for one day a week for 5 hours. Pretty wore out. She was violent but drugs now keep that under control.
Hi Jim, Welcome. We are all travelling a very hard road. We are here to help each other survive this horrible experience, with both practical advice and moral support.
Hello. My name is Marg. My husband was diagnosed at 65 and he is now 71. The struggle is now becoming very real. I am blessed to have such a sweet and kind husband. That part of his personality is still evident. Aphasia is becoming very apparent. We go to gym 3 days a week and he works with a trainer and that seems to really make a difference. I do have someone 1 day a week for 5 hours and it really helps. I look forward to "meeting" all of you strong and wonderful people.
Welcome, Marg, Happy you found this site. I had lots of weak moments but the kind folks here lifted me up when I thought I couldn't go on. Join in on any discussion or you may start your own. Again, welcome and take care.
Want to welcome you Alim. I trust you will find the support I did when I joined a year and a half ago. Wish you didn't have to be here, but am so glad you found us.
Hello. My name is Lee. i found this group while researching my husbands personality and mood changes. I did post about them, and just noticed I should introduce myself. my husband is 64 now and his fits of rage and erratic moods and cruelty just escalates. dr says he is borderline. I am sad there is a need for such a board, but blessed to have found it. i have already learned so much.
Hi Lee, I remember your earlier posts. We are here to help you, if we can.
This site has become hard for newcomers to navigate because many old discussion threads called "stickies," which have not been used for years, have made it hard for newcomers to find the threads they are looking for. I have brought the thread you started (about a diagnosis of "borderline") to the top of the list. It should appear just under the "stickies.
We want to help you but it's hard when there is so little information. "Borderline" is not a recognized diagnosis. If the doctor means "borderline personality disorder," that is a diagnosis. but it is unrelated to dementia or Alzheimer's disease. Several people suggested that in an elderly patient, such a dianosis might be wrong and the patient might have fronto temporal dementia (FTD), which has similar symptoms.
Can you tell us a little more about your husband's condition?
Hi, I just discovered this forum and I'm grateful, because there is an Early Onset Alzheimer's forum on Facebook, but far too many of the posters are caring for parents or other relatives. I wanted specifically to learn what other spouses are going through.
I just turned 66 and my wife (same age) has been in a care facility since August three years ago. I was her 24 hour caregiver for 2-3 years prior and I was unemployed before that because of the crash of 2008. Now I'm scrambling to provide for both of us and my own retirement. The money was all gone by the time my wife went into care, but I am finally turning the corner with a decent job and paying off debts.
I think I'm over much of the agony, depression and anguish, but in several areas of my life I'm not making much progress. I often feel overwhelmed and unable to set priorities. I never thought that living alone after 42 years of marriage would be this stark and sometimes lonely. This surprises me because even though we were partners, we also had solitary interests. I'll have more comments on this in another discussion. For now, I'm glad to be here and looking forward to reading the stories from the rest of you! --- BobR
Welcome, BobR. Look forward to hearing from you. My partner too is 66. You'll find lots of supportive people here who can relate to your situation - men and women both.
Hi everyone, I'm so glad I came across this site, as it's been looking as though there's no one who really understands what it feels like to watch the love of your life slowly drift away. Watching my beautiful Sylvia, my loving wife of 28 years, gradually succumb to the ravages of Alzheimer's has been the most heart wrenching and heart breaking experience of my life. I was full time caregiver to Sylvia at our home for several years, but gradually the toll of that caregiving began to impact my health, and so I finally had to give in and place her in long term care. Sylvia entered LTC on October 4, 2016 - making the past 9 1/2 months the loneliest I could ever possibly imagine. For the 28 years we were together, we never spent a single night apart, and always had our breakfast and dinner together. Now, coming home to an empty apartment, having my morning coffee alone, and cooking for one, has just been devastating.
I hope I haven't rambled too much, and that some you guys understand what I'm feeling.
Lots of people on this site can relate to your feelings. I had my DH (dear husband) home until the end but many on this board have gone through what you are feeling. Check the other discussions including the Sticky relating to the Spouse/ Partner in residence.
Thanks MaryinPA and bluedaze for your thoughts. Again, I feel so lucky to have found this site, and I know that I will also find support here as well. Hopefully I'll be able to offer the same to others.
Hi BobR, Welcome to the site. I have always thought that EOAD is a particularly cruel form of the disease. We all experience different reactions to the disaster of dementia, depending on our particular circumstances but since we are all Alz spouses, we share many of the same feelings, so we can understand your distress. I hope you find help and comfort on this site, as I and so many others have done. I look forward to hearing more about your experience.
Hi anorthendboy, Welcome. So many of us can relate to your experience of an empty apartment. My husband was in care for three years and it was one of the most difficult periods of my life. We have a had a number of members from Ontario and I'm sure you will hear from them.
Welscome to both BobR and anorthendboy. I wondered about a anorthendboys' name. I was married to a boy "from the north end of Winnipeg", so the bell's were already going off when you posted your former location. I was born in the north west of Calgary, have lived in various places in Canada and the USA, now in Vancouver, B.C.
mary75, Yes, I'm from North End Winnipeg. Is there any other North End????? We too have lived in several places in Canada, including many years in Vancouver (West End & Yaletown), as well as on The Island (Courtenay and Nanaimo). What part of the North End was your husband from?
Larry, sorry but I don't know. I didn't even know it was further divided into parts. He is dead now and all other family members who would have known. I know he said it was a lower-income part of the city at that time — he was born in 1931. His family moved from there to Vancouver and then Port Mellon about 1945, and we went to high school together in Gibsons Landing. I remember that it was predominately a Jewish neighborhood, although his family were not. I know he had a great appreciation of the Jewish culture and people. Winnipeg is known for its friendliness, and he said it was even more so in the North End. Resilience is another trait he attributed to the North End. No sissies there. He always made the claim that he was a North Ender with great pride.
Your husband nailed it exactly - Northenders were for sure very friendly and resilient. The entire North End was blue collar, and that made for strong family ties and sense of togetherness Depending on which part of the North End you lived, there were different ethnicities. The part where I grew up, usually referred to as the Old North End, was almost entirely Jewish. As a matter of fact, when the Jewish High Holidays occurred, even though the local schools didn't close, there were so many students missing, that basically, not much was taught.
Hello y'all, My wife and I have been married for 55 years. I an a retired military man. We have had a good life in spite of me having severe chronic pain for 49 years. About 7 or 8 years ago my wife started down the Alzheimer road. My pain issues and other new problems led us living the last one and a half years in an assisted living facility. My wife is at the end of stage five. I do my best but it is hard when you feel real bad yourself. Saying it is a challenge does not come close to describing life. We are 74.
Could you tell us a little about the kind of support you are getting — or not getting — from family , friends and the assisted living facility you and your wife are in? That's one thing this site is good at and that's support.
Welcome Rodstar43 here you will learn you are not alone we are all travelling through the same journey. There is lots of support and good information here a real lifeline for many of us.
Hi Rodstar, Welcome to the website. There is a lot of support available here and it sounds like you could use some, given your own chronic pain and your many years of caregiving. We have a few veterans here and quite a few wives of vets. My own husband, who died in March, was retired from the USAF. What branch were you in?
Hello, I swerved 23+years in the USAF. First in communications then as a First Sergeant for 7 years. I did mismanaged to get an AS an B.S. Degree before retiring. After retirement I picked up a M.B.A. Degree. Later at age 56 we retired. I felt medical problems were going to increase on me. We ran around our great country for five years in our motorhome. Because of my chronic pain, Sep decided on a home base in Idaho, then Texas on a little 20 acre ranch. In 2009 my wife had a few TIAs then seizures. I started to notice memory problems. She would have a seizure episode every five weeks. With each one she lost more and more. Our three adult kids noticed. She got test, got meds but continued. She has been in stage five for three years. In 2014 I had Bell Palzsy, recovered, had two TIAs. 2015 I had two more TIAs and a sepia blood infection. That last TIA my wife did not realize the danger I was in, I was Unnconscons for 20 hours. Our doctors said that's it, get off the ranch, move into an assisted living facility and be close to our children. I am the 24/7 365 carfegiver here. My wife gets agitated if we are separated for just a few minutes. Example, if I go into the hospital my son and his wife tag team to stay with her. She can get angry quick. All this is not easy some times when you have severe 8 out of 10 pain yourself. There is a full memory unit on our second floor, but so far I can handle it.
reread my words and my kindle sure screws up some. My time on the desktop is limited. My wife gets jealous and paranoid. She will suddenly appear and look over shoulder. That was motor home not microphones.