Please also make sure that you have Durable Power of Attorney. The moment your wife is declared incompetent a regular POA is worthless.
It takes time for us as caregivers to adjust and accept the situation. Being impatient, angry, tired are all normal. Your feelings are normal. I recommend therapy to help you adjust and accept your new situation.
Welcome Todd this site has been a lifeline for me a place where you can let your feelings out and there is no judgement. A safe place to be full of caring individuals who are living or have lived through what you are going through so they get it.
Good morning. Hello, I just found thealzheimerspouse site this morning trying to learn. After reading through the whole site this morning for 4 hours (and crying) for 4 hours I feel I am where I need to be for support and information I will need in the years to come. I don't know how involved I will be entering comments, but I will be eagerly reading and learning from you all. Grateful I found this site early. My husband's memory is beginning to fail him daily now--the progression is devestating. He is the love of my life--"the other 1/2 of my soul".... Thank you for starting this site so many years ago... and keeping it going so it would be here for me now. THANK YOU!
Welcome Kay42. Glad you found this site. Lots of information & help here - good place for you to vent - we do not judge. When I joined last year, like you I read a lot of posts on this site & I also cried - I still cry sometimes. Folks here are always ready to listen & help.
Welcome Kay42. When you are ready tell us more about you and your husband.
don't be afraid even to make small comment - helps us know people are still here. We have many who introduce themselves then we never hear from the again. That is sad because they evidently were looking for support when they found us. If you click on my name my info is on my profile.
Welcome to the best website you will ever find for the particular concerns of the spousal caregiver. When my husband was still at home this was the one place I could go to learn, vent, tell my story without judgement and with lots of support. I earned my * this week when my husband lost the ultimate battle with dementia on Wednesday. I know I will keep coming here for support and to share my experience with others, such as yourself. When you feel comfortable to share a title but about yourself and your situation, please do. It will help us to better support you as you go through your journey.
Hi Kay42. Browse the message board as much as you like. You will find helpful information for all of the stages of dementia. I want to echo Bqd*. You will find a very supportive nonjudgmental group here who will truly "get it", and love you through this. I've found that I can truly share and vent here without fear of burning out friends. Look forward to getting to know you on your schedule. Best wishes on the journey no one wishes to have to travel.
Just a quick note to say hello and make sure I'm able to post to the message board. My wife is only 57 now and was diagnosed with early onset AD about a year ago. She can no longer work or even drive anymore - still adjusting to her loss of independence. I'll probably lurk around and get a feel for the area before posting too much. Thanks for the site. I'm looking forward seeing what's here.
Welcome houstonian you will find all sorts of information here from people just like yourselve we all get it as we are all living it or have lived it. NO judgement here just support.
I just lost my husband on June 27, 2018. He was 70 years old and we had been married almost 48 years. We noticed him search for words about 4 years ago but he wasn't formally diagnosed until 1 1/2 ago. We mostly had good days this past year and a half. There were times he was confused and didn't know me, but it always got better. The week that started the end went something like this. On Monday, we went to visit our youngest son and family. Tuesday, we went to our grandson's send off to middle school and later that evening to a baseball ballgame and he enjoyed it so much. We didn't get home until very late and he was a little confused. The next morning there was still some confusion but he took me to work and picked me up as usual. By Wednesday, he was getting more confused and by Thursday, he didn't know me and was getting agitated. That evening, he was upset but seemed to settle down as the night went on. On Friday, he took me to work and I should have known he was not himself. And, later that morning he was agitated and angry about our son cutting some wood. It escalated and he threatened to harm himself so we called the E-squad and they took him to our local hospital. He ended up in the Geriatric Psych Ward for 2 weeks, getting more delusional everyday. We transferred him to a larger facility and he had 1 good day there. He had to be restrained during that time. After all the tests for other another reason he might have declined so rapidly it was decided there was nothing else they could do. He was put in Hospice and died after 3 days.
I still have not been able to wrap my head around this. We had talked about what was ahead of him and he knew that the chances were he would be in a nursing home at some point like his uncle before him. I know that he did not want that and going quickly was better for him. But that month and a half were so horrendous for him and our family. I can't get it out of my mind that I should have done something more to save him. He had always come back to me and this time he didn't.
Charlotte, thank you. I'm sorry that your SIL had to go through that but I had never heard of it ending that way so the fact that someone else experienced this lets me know that it does happen that way. Everyone tells me I should be glad that he went quickly, but in the end I don't think it matters how fast, just the fact that he is gone and I miss him so much.
DRA I am so sorry for your loss. I can't wrap my head around the speed of that! He was taking you to work and then just gone in a matter of weeks? Tokes. That's a roller coaster ride. (((( Hugs ))))
bhv, yes it was a roller coaster ride. I go over the events of that time every day trying to make sense of it all and I know that there are no real answers. He is gone and I'm left wondering what my life is going to be like. I have a great family and a wonderful support group from friends and my church. But, I am just sad and miss him so much. We were together 6 years before we got married so for 54 years of my 69 years he was in my life. I feel like I let him down by not recognizing that day he was struggling. He counted on me and I told him I would always be there for him.
DRA, you did not let him down. You did the very best you could at the time with the knowledge you had then. Your husband well knew how much you loved him, and he loved you. It will take time to move though grief. I have not faced this kind of grief yet, but from reading this site and others, I've read often enough of how painful and long and overwhelming it can be, but spouses do come out on the other side. The book "Year of Magical Thinking" by Joan Didion was helpful to me even years after my father's death. Eventually you will be okay, at least most of the time.
Good morning, and thank you this site. I am both relieved and saddened to hear that others are sharing similar experiences. My wife has just recently been diagnosed with AD, although I have known it for several years. My heart is broken, but I'm trying hard to take care of myself so that I can be a better caretaker for her. Again, thank you.
Welcome, BobY, glad you found this site. We're all in the same boat - we understand & support each other & we don't judge. Post whenever you feel the need to vent, share, ask questions....
Welcome BobY. sorry you had to join us but I have been here since 2009 -it has been a lifesaver for me. The wealth of information here is also amazing.
Searching the web for words of wisdom in dealing with the loneliness of caregiving, I happened upon this site. Lo and behold, I had joined in March 2017. Now that my husband is in a memory care facility I have more time on my own, but now what. Many before me have been here. Love to hear from you.
Welcome back jmomper. I just placed mine the 17th. I haven't gotten rid of his clothes, but am working on cleaning out all his and my junk. We have live in the Motorhome for 14 years, so lots of accumulation. But, I still procrastinate choosing to play computer games vs working cleaning!!
Welcome jmomper. My husband has been in long-term care now for 11 months & he was in a private facility for 5 months prior to that. Life is certainly different. I'm very lonely, but I've had to make efforts to go out & be with people. That does help to a degree, but it takes time to adjust to living alone. We've been married for 45 years, so yes it's an adjustment. I enjoy visiting my husband daily. As long as he's here physically, I need & enjoy being with him, even though it's very sad to see him in that state. That's my personal experience, everyone is different. You will eventually adjust to your new life & find meaning & joy again. Give it the time it needs.
I’m Marc Hult ( not to be confused with only other “ Marc Hult” in the USA who lives in Washington State;-) My wife of 47 years has developed undiagnosed dimentia ( ¿ Levy/Alzheimer's/Parkinson’s/alcohol ? ) which is ironic because she was a world-renowned researcher in medicine. ( To be blunt , all of her patients ( kids) would have died without her invention — any many did anyway. She refuses diagnosis which leaves me, as her only care-giver, in the dark as to her prognosis and how to best care for her. This is tearing me to pieces.
Welcome Marc, sorry you had to join us but a great place to get knowledge and caring. Even without a diagnosis, we can still support you and help you get through this horrible disease.
Welcome jmomper and Hult. I found infinite assistance during my journey with my partner through dementia leaning on the care and wisdom found in this website. One of the things I did in addition to starting pages and communicating with current members was to go way back in history and read dozens and dozens of the early pages. There is a wealth of information here from many years ago to the present. I don't pretend to have read everything written here, but I certainly learned a lot and received a lot of emotional support through this website. Sorry for all you are going through. Trusting you will find the strength to make it through. Feel comfortable raging as necessary, sharing your experience, and holding on to lifelines thrown to you by members.
Hi, my name is Valerie and my husband Kevin has early onset Alzheimer’s. He was diagnosed at the age of 57 and is now 61. I’ve never joined a site like this, but have lately needed to just reach out to others who “get it”. We were married in 2007 and by 2015 he was diagnosed with this horrific disease. It was a second start for both of us and it was great. But now I just feel so lonely and angry and exhausted. Unfortunately this disease has progressed very quickly. His words are muddled and can’t really carry on a real conversation. He thinks he’s making sense and through enough of just knowing him I usually put the pieces together. He has such a hard time with comprehension and he can barely write his name. It is so hard to watch him disappear. He was a former Speech, Theater, English teacher and was brilliant. I still work full time as a High School Math teacher as I am only 54. We were at the doctor’s the other day and I was talking to this nurse who basically summed up my life when she made the comment “so you have two full-time jobs that must be really hard”. Someone for the first time acknowledged this fact. I was both happy and sad at the same time. I don’t really know what to expect from this site or if anyone is still reading this long post. But thanks for listening.
Hi Valerie. Welcome to the site no one wants to join. I am well beyond being in the active part of the disease. My husband died in 2014. There are lots of people on the site who "get it". I am sure someone will chime in to listen and comment. My husband was a college professor in the sciences and I understand how hard it is to watch this brilliant man disappear into dementia.
A lot of the value of this site is just knowing there is someone to listen without judgement. Keep on posting.
Welcome Valerie. So sorry to hear about your husband being affected especially so young. My husband was 60, his younger sister 55, so this horrible disease knows no age limit.
We all know how you feel - the loneliness, the anger and resentment that can build up, the exhaustion from hearing the same things over and over; or from trying to figure out what they are saying or want. Hang in there, we are here.
Valerie, take heart -- at age 54 you've got lots of life still in front of you. I lost my precious wife of 60 years in 2009, but my life didn't end then. I think my journey was helped a lot by some advice received from a member of this forum named Starling, who observed that spouses who seem to come through this terrible caregiving journey best are ones who are able to believe and focus on the fact that there will still be a life for them "AFTER". Similar advice came from a book entitled something like "Playbook For Alzheimer Caregivers" written by Coach Frank Broyles who had lost his wife to Alzheimer's. He basically advised accepting and dealing with the fact that Alzheimer's is terminal, like a coach needing to put a losing a game behind him and begin to plan for the next game. The "next game" for me was knowing that I didn't want to be alone. I didn't like that my wife was dying, but I accepted it and was able to start working the problem of not being alone -- and remarried seven months after my wife's death, with the full approval and understanding of my family and friends.
Valerie, sorry you need to join our group but glad that you found us. Based on age and your emphasis on his speech he might not have Alz but have Sementic Dementia or PPA. While much of caregiving will be the same recommended medications differ (most Alz meds are not recommended for FTD and both I mentioned are FTD variants) and the challenges of a caregiver can differ.
Hi Valerie, This is where I chime in after paulc to recommend an additional site www.ftdsupportforum.com. You are not alone. Everyone's story is different but there are common threads. Searching old posts can bring up helpful insights and suggestions. I don't imagine you have much time for that, so if you have a question just start another thread and this community will respond. Best Wishes, Carol
Hi Valubull and welcome this is a great site to come for advise and just to vent there is no judgement here just people who are living what you are or have lived it. It has been a lifeline for me as it has for many that came before. YOu will need this type of support, others will provide advice but unless you have dealt with it with your spouse they cannot really understand it.
My wife is now 62 has been in a home for over the last two years, in hindsite the first noticeable symptoms started when she was about 50, she is now in the latter stages. The saying is if have have known a person with alzheimer’s Then you have known one person with Alzheimer’s everyone is different and although there are different stages everyone’s journey through this is their own.
Once again welcome and please lean on others here for advice and support I know I have.
welcome Gr8shpr. While waiting for diagnosis make sure all the paperwork is in order while he can still sign: DPOA which includes financial and medical power of attorney. If you have assets best to see an elder attorney if you already have not to protect your assets. If he has not been diagnosed, might be a good time to look into long term care insurance.
Feel free to ask any questions and/or start a new thread with questions.
My husband is 71, diagnosed first with aMCI then not long it was 'dementia of the Alzheimer's type' - that was in 3/2008.
@Charlotte Thank you for this information. My DH is 70 and the doctor has refused to do any testing because, according to him, there is no cure or treatment to stop the progression. I am only now beginning to consider further steps, although all usual paperwork is in order as of last April 2018. I will return later.
yes there is no cure or treatment to slow it down, but, with a diagnosis it will help when time comes for medications. Some should not be given to people with some dementias.
Is your husband on a statin drug for high cholesterol? If so, look to it because a knows side effect for some is memory loss. If he has had a colonoscopy the common anesthetic to use is Versed which is designed to cause memory loss so you don't remember but the loss can continue.
Welcome Konnie 54. We are all in the same boat & are here to help you. Lots of good info from folks that have been on this site for years. My husband was also diagnosed at 64, but it had been going on for a few years already (unbeknownst to me). Yes, it's definitely a roller coaster ride & we are here to support you.
Hello Konnnie 54, you've found a great place to gather information, learn how others have handled similar problems - and of course, just a safe place to vent when the frustration gets too bad. I'm afraid that's my outlet - we are older than most on the list, dh will be 82 the first of March, and there just isn't anyone I can talk to about his progress/lack of it. He started having problems over 10 yrs ago although the dr paid no attention to me; just aging. I was finally able to get him in with my own doctor who worked with him, then referred us to specialists. Was about 3 years ago he began going downhill faster.
I don't know at what age they call it EOA, my Mother was 64 when my Dad died and we realized all those little things we thought were aging were actually AZ. My Dad was fine, they both lived at home so it simply didn't occur to any of us that there was a real problem. She lived about 10 more years, a few at home, then a private facility then the last 6 in a nursing home. My older sister was 67 when during one of our weekly phone calls, I realized something had changed. Her daughter told me she was acting just like Gramma did. She seemed to follow the same pathway, even the same time line. The difference was, her children lived close and her daughter moved back to CA to care for her so she was able to stay in her own home, and financially they were able to hire 24 hr help. What's left of my family is scattered to the four corners so I know it's up to me. I sometimes feel I'm losing my mind :) but I'm already far older than they were so maybe I inherited my Dad's genes.
If you have any time, I usually do it when I must do something or I'll start screaming and never stop :) is to go back to a few years ago when there were many more people active on the list. I find a lot of information, and it helps to knows others have gone through the same thing. I've said as the disease gets worse dh seems to get healthier - whereas I keep losing ground. Suspect I'll be pushing up daisies before him. Welcome to our little group, a roller coaster is a good way to describe our lives now.
Early Onset Alzheimer's Disease which they are now calling Younger Onset due to confusion when people say early stage is when diagnosed before 65.
Yes, Konnie, there is a wealth of information in the back post. I have been with the site since 2009, so I know all the information that has gone on the last 10 years. I find using 'advance search' bring more of what I want to know than regular search.
Welcome Konnie this site has been a lifeline for many of us loads of info and support no judgment. My wife was diagnosed at 56 but had been going on for years prior she is now 62 and has been in a home for over 2 years now. This is a great place to vent we all need to do that and we all need to feel that we are not alone. Everyone here gets it as they are living it or have lived it. Again welcome.
So glad to find this site. My DH was diagnosed in February 2018 with Vascular Dementia and Alzheimer's and lives at home. This summer he had two major strokes and a diverticulitis abscess that resulted in a colostomy. He is not able to learn the bag routine so it is me and a caregiver who take care of it. I am blessed to have the best caregiver EVER who is very competent and has a wonderful way of cajoling my husband into showering and putting on fresh clothes. We've been married 28 years and have enjoyed a deep partnership that no longer exists. I'm lonely. No girlfriend can fill the void of a partner. Thank you for understanding.
Welcome. Sorry you had to join us but there is a wealth of information in all the past post and we will be here to walk the days with you. True - a girlfriend can't fill the void of a partner, but we will help and support you.
My hb is 71 diagnosed in 3/2008 with 'dementia of the Alzheimer type'. We've been married 47 years.
Thanks for the welcome Charlotte. My HB was diagnosed with MCI in November 2017, VD and AD in February 2018. Symptoms began long before diagnosis, some the result of previous TIA strokes (2013 and 2017) and the start of AD. He's 78 and I'm 60. No kids in our marriage but he has two from two previous marriages. Neither kid is helpful or supportive to either of us nor do they visit regularly. Saving that story for another thread. For now I'm just happy that I found this site and look forward to interacting and learning from all of you.
Welcome Mrs.Mountain Guy. Like Charlotte said, there's a wealth of information in all the past posts. We all here to help you & support you. Fell free to vent.