Hi, I'm new to the group. My husband was diagnosed with early stages alzheimers in 2011. I am in need to talk with and hear about people who are going through the same things I am. He was 60 years old when he was diagnosed.
Hi Karenk, Welcome to the group no one ever wants to join. My DH (dear husband) also was dx (diagnosed) with early onset AD (EOAD). At age 58 and sadly he passed just short of 4 years later. Not all go as fast as he did. I am sure he had AD for years before the dx.
Hang in there, weekends tend to be quiet, more will come along to talk with you. If you want information, we have it here on almost any subject you can think of. We have covered so much here. Just look around and if needed you can do a search.
Hi karenk I come here every day. My DH was diagnosed at age 56. Like others, looking back it probably had been starting years before. My DH is turning 63 in May. There is a lot of helpful I for action and lots of support. Sorry you are here.
Welcome karenk - so sorry you have to be here but there is a wealth of information and advice and, best of all, no judgement! My husband was officially diagnosed in 2012 at age 62 and has gone downhill rapidly. He has been in care for a year now and last week the dr. described his condition to me as 'end stage'. Another wife told me that could mean anywhere from two weeks to two years - this disease is so individual there is no way of knowing. I know you will find tremendous help here.
Hi Karen. You have definitely found a safe place where everyone "gets it". Feel free to share, vent, lash out...whatever you need. We are all here for each other. My husband just passed away 6 weeks ago at age 61. He was diagnosed at age 56. There is no other place where you will get as much acceptance and understanding. As the homepage states, as spouses...our issues are unique! This is a whole different ballgame than the multitudes that are taking care of their elderly parents with this horendous disease! Welcome aboard.
Hello, Karen. Welcome to our merry band here in Happy Hollow. (Yeah, right.) My husband was 25 years older than I, and it was 14 years from the first signs of early Alzheimers until his death at age 89 and a half on Sept. 2, 2014. We were able to care for him at home (just barely) with Hospice's help. I don't think you will find a better place than this website for advice and support.
Welcome to my website. My detailed welcome to you ( and two of our other newest members) is under the "sticky" topic - "New Members- Please Introduce Yourself Here" on the last page of that thread - pg 16. FYI - "Sticky" topics are topics that remain "stuck" at the top because they are informative pieces about the website and how it is run. Topics that are not "sticky", rotate lower on the boards as members stop writing on them. As soon as someone either starts a new discussion topic, or someone responds to one, that particular discussion comes to the top. As administrator of the site, I am the only one who can make a topic "sticky". I never mentioned that before; I just assumed everyone knew that - I guess now is as good a time as any to mention it.
Anyway, feel free to start a discussion on any topic with which you need help. Or if you just want to talk or vent.
Rona I am new as well my dw was diagnosed at 56 in may of 2012 but going on for a long before that I think 5 years or longer. Nobody wants to give you the diagnosis when you are younger and takes a long time to rule out other possible medical issues. She was in mid stages by the time we got the dx. Just learning the abbreviations.
Noticing big changes right now and dreading what is coming. I feel we have done well to this point staying As active as we can even though it is hard for her. I think one positive thing we did was not hide what's was going on from the beginning were open with friends and family. If they couldn't handle it, not many, then so be it but by far most have been supportive but I feel they don't really know what to do. They are supportive but I find it hard to just ask for help. I know I need help now as I can no longer leave dw alone and she really cannot do anything for herself. Lost driving over 2 years ago, can no longer use appliances or understand how anything works. Saw her confused the other day on how to turn the tap on. Also staring to see some hygiene issues not major but there. Also difficulty dressing. So I know we are getting up there. Having said that we are currently travelling having fun going dancing tomorrow night which she loves.
She is apposed to getting help, embarrassed about it and I am dreading having to do this but I know I will need to. I have a very nice RN lined up to spend a few hours a week with dw so I can have some time, don't know what I will do with it but know I need it, my hope is that she will accept this. I have billed it as I need help on one level she understands but then feels she is fine on her own. Any advice?
Rona - you are traveling in your RV. That means changes constantly. People with dementia do not take well to change. We live fulltime in our motorhome. Until 2 years ago we traveled and worked at RV parks/campgrounds. (he had to quit working in 2008). Even though we change outside environments, the inside is always the same. Your wife is in unfamiliar environment both living in the RV and outside. That will cause more stress and confusion for her. Hopefully she will adjust to the RV soon so it doesn't seem so foreign to her.
Rona Understand what you are saying Charlotte but it has been good. Thought long and hard before we left. Is it good to just give in or should you keep trying? She has adjusted we have our dog and she is doing fine having fun but we will have been gone two months and she always asks about when she will be home. I am well aware home is her safe place. This trip has been very social with old and new friends has been good for me and we have had fun but ad is just progressing. People around us have been supportive just trying to continue through life as best we can. We will head home on Sunday that I am afraid is when reality will really hit.
Good to hear overall the trip has been good. It probably is something you had to do for you more than her. You are the one who will be aware of your world getting smaller as a caregiver. I know for me it is so hard to give up traveling and be stuck in one park. Sometimes I think about just moving to another park in the area but then it would be hard on him to learn a new park at this stage.
Enjoy what time you have left. Sounds like you have it under control - as much as we can. And it is so good that you have friends who have not run.
Thank you Charlotte yes i feel we have been doing as well as we can but I sense soon it is going to start spinning out of control. I asked our health care professionals and they all advised to go now while we can so we did. Dw everyday asks when she can go home but asked if she plus like to stay longer the answer is yes. Last year we meet 3 couples who travel together and this year we hooked up with them, did not travel together but went to the same parks just overlapping time has worked well. They are all very helpful and gives me a chance to be social
Moved to new community 5 years ago just as we started to talk about dw memory issues, moved to help my inlaws as mil had major stoke and fil starting to fAil. MIL passed away 20 months ago, fil just passed from AD. Was hard as when we had him dx it was when dw was showing signs then within a year she was going through same tests it was very hard. Anyways as a result hard to get out there and meet new friends when you are starting to withdraw. So we have good friends but not many close. So when we visit usually an overnight we have gotten a lot of company but I have realized this is very hard on dw and really cannot do,that any more. She can visit for awhile but then needs her space. Staying with others is also not good. Typing fast as dw really does not like when I am on computer or phone says I spend too. Much time have others had that.
So when we get home I fear our world is going to shrink I know at times I need a break so I can be better for her. When I get frustrated I know I make mistakes just don't have the patience I think I should have. Need to go now
I also am new to the group. My DH was diagnosed 3 years ago with dementia although he showed memory loss at least 5 years ago. The neurologist says that with the type of dementia he has can go on for many years. His aunt just passed away at age 92 and had dementia for years. He is delusional and often does not know who I am - thinks I am his brother and wants me to call his wife so he can go home where his wife and kids live. Our children are grown with families of their own. He can't tell you their names but seems to recognize them when he sees them. It's the same with the grandchildren. He is 80 years and and I am 77 - his sole caregiver. Each day is a challenge. I'm glad I have this group to come to.
katlady37 and Rona, you are in the right place. People here do understand…much more so than "civilians" do…and can and will offer support and advice for whatever is going on at the time. Isolation and exhaustion are two big issues…I know they were for me. The computer helped a lot with the isolation, as in many ways it became my window onto the world. As for exhaustion…I never figured that one out…probably should have paid for more private help for him and gone to a spa (ha-ha, yeah, right)…but I know that day programs have helped lots of caregivers who needed a break but were not ready to place their spouse in a facility. One thing I do know is that it is a good idea to plan in advance and look around to see what might be available in your areas as you need more help. Talk to the doctors' offices, your local Alzheimers Association, and your local Office for the Aging…also to friends and neighbors who have elderly relatives…to see what might be appropriate and affordable, even if you don't need it right this minute. As many have said on other threads, you should consult with an Elderlaw or estate planning attorney, too…your individual issues will vary, of course, but you basically need to figure out how to get the Alzheimers spouse taken care of without impoverishing the well spouse. And you need to be able to get control of and handle the finances without needing your spouse's signature on anything. (Taxes, selling a house or car, whatever. )
Rona, don't beat up on yourself. It is very frustrating being tied to a demented person all the time.
katlady37, my sister-in-law is 92 and still taking care of her demented husband who is 94. They are still in their own apartment, but she is ready to croak. It is so hard. You must be one strong lady.
Thank you Elizabeth - all good advice. I sure hope I am not taking care of my husband by the time I am 92. Your poor sister-in-law. My middle son is an inspiration to me. He has a 22 year old autistic son and his attitude has always been that you play the cards you're dealt and make the most of it.
Katlady - we all can attest that is is much different taking care of your spouse, the one you have spent much of you adult life with; the one you planned your retirement years with, who you cried and laughed with, etc. A child is different. Yes the stress and exhaustion can be the same, but the emotional toll is totally different. But he is right - we have to play the cards we are dealt and try not to dwell on what it was, what will never be.
welcome katlady rona and Karen. you will find yourselves checking in so much now you have found the best place for support while you journey thru the AD maze with your loved one. divvi*