Iam not feeling very good at the moment. If you remember I posted back in July saying that we still did not have a diagnosis for my 62 year old husband's memory and spatial problems. Well... today we were told he has early onset Alzheimer's. We both knew it was some sort of dementia but the diagnosis somehow makes it all seem so final. At the moment I feel like I have been hit by a ton of bricks. My husband Paul seems to be okay with the diagnosis. Is more worried about our money situation but to be honest he has planned well for "our" future. I think it is the unknown that is really upsetting me. He is actually doing well. Doesn't drive but goes out by himself, rides his bike, walks the dog, shops etc. I just don't know for how long. He is on meds. My younger son of 22 works, but still lives at home. He is quite supportive. My older son who is 39 and lives an hour and a half a way has already started, very nastily trying to tell me what to do etc., that I shouldn't let Paul out, etc., etc.. I am not looking forward to the long road ahead. Part of me wants it to be over quickly, the other half wants him to stay like this for a long time.His mother has been in a home for over 10 years. Doesn't know who we are etc., etc.. I pray to God the same thing doesn't happen to him for such a long time.
Julie55 Everyone of us can relate to your feelings. Just know you've found the best site to seek real world guidance for virtually every problem you'll encounter on the journey you've embarked upon
Julie, I lost my precious wife of 60 years four years ago -- seven years after a diagnosis of late onset AD confirmed what we had been suspecting for the year or so prior to the diagnosis. But most of those seven years between diagnosis and death were basically GOOD years, so my advice would be to put worrying aside and concentrate on milking as much happiness for both of you as you can out of whatever time you have left together. I found myself able to compensate as my DW's deficits worsened, allowing us to undertake new adventures and enjoy a pretty good lifestyle right up to about a year before the end, at which point one of our grown, but unmarried, sons moved back in to help me with loving caregiving. And the end wasn't too awful -- I was able to care for her at home, and hospice was a blessing during the last three months. I'm sorry you find yourselves at this point, but it is what it is, and you just have to try to make the best of it.
Hang in there, Julie55. As Marty said, you've come to the best online site for people like us who must deal with this horrible disease 24/7. Just remember that whatever you are feeling is okay ... okay in the sense that you owe no one any apologies for your feelings ...and whatever decisions you make both for yourself and your husband are, by definition the right ones because the bottom line is that there is no right or wrong decision. Each caregiver must do what he/she thinks is best and no one should guilt you into feeling you should be doing something different. YOU do what YOU think is best and THAT will be the right decision. One thing you should do now, though, is see an eldercare attorney and financial advisor to take care of important financial planning and end of life matters now so you are prepared as possible for the future. And as wonderful as this site is, see if there is a spouse support group that you can join near where you live. Many of us have found such groups very helpful. Hang in there, Julie55.
Gourdchipper is right. My wife was diagnosed at 57 and as Marty said everyone can relate to your feelings. But I hoped for two years at that time where we could be relatively normal and even though I was stunned, we went to a lot of little towns and long walks in parks and nature reserves (she loved walking and exploring). She had just retired and going to all those places was a concentrated effort on my part; but, I live knowing I did what I could.
I wanted long talks but my wife wanted to block it out. So we pretended but I did have those two years where we lived like we had hoped. Alzheimer's had to wait.
Writing this brings me to one of the heartbreakers. It was September 2009 and I was chest high in water at the lake. She was cradled in my arms while I looked around knowing I would never have this again. And that was true.
Courage Julie. And I hope your older son comes around to being able to handle this better. Many don't because it really is so difficult. We really do know what you're feeling because we've lived it too.
Julie, as all have said we do understand because we've lived (and some are still living) it too. I find it quite interesting that all who have responded to you so far (except me) have been the wonderful husband caregivers. That's one of the reasons this site is so helpful...all caregivers regardless of sex are so generous with their advice and experience.
I think the advice to see an elderlaw attorney is very good so you can put those worries behind you. Enjoy the life you have with your husband now...we'll be here to help and support you whenever you need it.
Julie I am so sorry for your sadness . It takes me back to a the brief time, two and a half years ago, or so, that I started posting here. I can see myself in your pain. The first part in some ways was really the hardest, trying to say no no no this can't be. I was even angry at my guy for getting it!
The wisdom and love and true aloha on these boards has literally pulled me through a quagmire of deep pain, indecision, anger, and rants in the early hours when I cannot sleep. We are here for you.
Thank you everyone for your supportive comments. Gourdchipper your comments particularly lifted my spirits. Thank you for that. We have known for 2 years something was wrong, just never had the diagnosis until yesterday. After a little crying on and off, I have decided to pull my socks and get on with it and enjoy the time I have with him. In all honestly we never did much together, but since he has been different these past two years, he is kinder, more interested in doing things with me and it has been a very nice 2 years. He is a very generous man with everyone but himself, so today, I went out and bought him TV speakers and a subwoofer so he can listen to music via the TV. My younger son hooked it up and we called him down. He adores music but listens to it on his computer via headphones up in the den. He came down and I was wondering if he would notice. Well he did! He was so happy he cried. I then went up the street and bought us all Christmas lattes, from Starbucks. Something he would never do as I said he is stingy with himself. Not any more. I'm in charge now and I am going to make sure he experiences all the things he should have been experiencing in his life and we have a lot of catching up to do, and.... guess what, he loved his Peppermint mocha latte. It is nice to think I have people on this board whom I can speak to, I have a feeling I will need to be doing that alot in the future. Thank you everyone for your kind words of support. Julie
Julie 55 I am so sorry that you now apart of our club, you will find alot of help and support here. If I were at the place you are now, and knowing what I now know, I would go ahead get all the legal papers in order before he progresses any further. Make sure you have a medical directive or a living will so that you can help him when it is time. As far as the older son getting snippy, nip that in the bud now. Let him know that you are capable of doing what has to be done and that you need his support not his critical comments. It might help if you and your husband have the talk with him together. Hugs to you and your family.
Julie - so sorry you have to be here. I agree go and spoil him and yourself. One of the more difficult things I found in dealing with hubby is taking slowly taking charge of everything. I was always surprised and sad when I realized that he could no long do something. But it does make you stronger.
I think shellseeker has good advice regarding your eldest son....he is probably in shock too. A family sit down and discussion may be the best way to go.
Great going, Julie -- sounds like you've already got a good start on making the best of a bad situation, what with the TV speakers and Starbucks extravagance -- keep it up! And do continue to post and let us know how you're doing. I came here originally looking for information, and I found lots of that, but I also made lots of cyber friends and got emotional support that I didn't even realize I needed, just being able to share with folks going through the same thing I was.
Julie, I am so sorry you are here, but glad you are, for all the great information you will glean from it . I have been here several yrs. I too have tried to spoil my DH as he was always so close with money. He never wanted anything for himself. He is pretty firmly into stage 6 and sinking pretty fast. I hope you get the support you will need, this site is phenomenal .
I knew for several years that Herb's memory was going south and that his mother died from AD. I hoped against hope that this wouldn't be his fate. Finally I had him tested and the diagnosis came back early AD - same as your dh. I had the same socked in the stomach feeling as you and I grieved all over again. And I've grieved over and over again in the past 4 years and I'm sure there's more to come. With the proper medication, Herb is quite wonderful to live with. He can't do much for himself anymore, but he does have a cheery disposition that I am very grateful for. This wasn't the case in the beginning before I came to this site and got advice about meds and, PTL, he does have a good and very cooperative neurologist who works well with me.
Good luck with your son. Perhaps he needs to come for a week long visit and see for himself that your dh isn't quite incapacitated and that he (and you) should enjoy his freedom as long as he is capable - the other will come soon enough. And, Amber is so right, all of this will definitely make you stronger. God bless you.
This is my first post. If you don't mind I will refer to my wife as DW. (Darling wife) She is 61 and just got a dementia diagnosis after three years of MCI. We have been married over 38 years and have two wonderful children. She was a world expert in her medical field, the most brilliant woman I ever met. But when the patient is a physician there are some special problems. At this moment she is adamant about not telling people. She is lovely, good-natured and was always so introverted that she can just smile and laugh and almost no one in the group "suspects". I and our two grown children go along with the "party line", that she retired because. she did not agree with changes in her organization. I think she finds the "comedown" from being a keynote speaker at conferences to being totally dependent very hard.
I have retired from most professional work to be a full time caretaker. I can do some consulting from home if I want to. Compared to most, money is not an issue. She has no trouble with ADL, and can do most IADL with my assistance . ( I was always a very good househusband, cooking and laundry were always my department, lots ot photos of me ironing her presentation clothes at meetings)
I wonder if any others have similar issues with "concealment". Is it common? what do you do? FWIW when we travel she has no problem at all when I tell strangers (hotels and restaurants)
I do have other issues once I get up the courage to post them
Crushed, I can relate to what you wrote. I am a retired physician and my DW is a biochemist, much smarter than me (which is why I hesitated to date her in highschool). She was diagnosed with AD about 10 years ago, but managed to conceal it for quite a while. I remember people at church suppers telling me that they couldn't see anything wrong. Fortunately, she did not mind letting people know that she had AD when it became more obvious.
Unlike you, I was not a "good househusband". When I had to take over the cooking it was quite a chore, but since I was a chemistry major in college, I could read recipes.
This June will be our 60th wedding anniversary, but she does not realize it. Our 3 kids are very supportive.