Since my DH was dx moderate stage ( I think stage 5) I am trying to learn all I can about his illness . I know everyone is different, but I find it helpful to hear other's experience. I am also trying to plan ahead, as Joan advises , so any who can share would be appreciated.
Mine has been in moderate stage for about a year but I can tell he is slipping. He is starting to have incontinence issues. It has only happened about half dozen times but again this is new. As you say everyone is different and you know your DH better than anyone. To others who do not live with this 24/7 my husband probably seems like he is doing well. The other big thing is he goes to talk or say something to me and the words will not come out or he goes to say something and forgets what he wanted to say. This was not happening a year ago. I too am planning ahead. I found a respite place that works for me. I have left him twice so far. I am also looking at assisted living as that is where he is now. He cannot dress himself or shower without help. He can still shave but I have to remind him. One time he put toothpaste on his face thinking it was shaving cream. He is very placid for which I am grateful. He is not mean or abusive to me and does not fight me on too many things although he hates me making decisions for him. The big thing for me is when he is home the only thing he does is watch TV or sleep. He no longer reads newspapers or reads anything. He tells me he cannot concentrate for any period of time. I do believe he will get more mental and physical stimulation in an assisted living facility than he does here at home. The thing is with home it is where they are comfortable. I want to place him before I have to face some medical crisis. He has a number of physical issues--low sodium for which I have to monitor his liquid intake, COPD and peripheral vascular disease among others. Lorrie I would be interested to hear what some of your husband's symptoms are right now.
Our story....DH was 58 at DX was working full time, driving, doing everything any normal person would do. The cracks were starting to show at that time. But most thought it was depression. Now it will be 3 years next month. He can not tell me the date, day, time, who anyone is, what he just said, can not be left alone, can't make or take a phone call......He is able to dress himself and make a bowl of cereal and turn on and off the tv. When he talks he uses few words and almost unable to understand what he is trying to say......Who know how long any stage lasts they are all different.
Hard to believe how much has changed in the last three years.
DH was dx'd in 2008 at 58 with FTD or FTD?AD. At that time I would say he was in early-mid stage 5 on the Fisher scale. He could dress himself, shower & shave without assistance, make soup or sandwich for lunch, was driving until he got lost twice and the dr wrote to motor vehicle to suspend his license. Could hold a conversation but didn't remember it, did not know day of week, month or year, sometimes knew who the president was and had a mmse score of 21-22. I was working at the time and doing a lot of out of state travel so he was home by himself taking care of his needs and the 2 dogs abou 2 weeks out of every month. In retrospect I am not sure how well he was coping while I was away-every time I called him from out of town, no matter what time of day, he was never home. I think he was having trouble finding his way back home when he went out but he never said anything about being lost, etc. I beieve he was in stage 5 for about 3 years.
He is now solidly in mid-late stage 6-can read but with difficulty and doesn't remember what he read, having great difficulty with words and speaking, needs total assistance and cueing for all activities of daily living, is occassionally incontinent (both bowel and urine) can't be left alone, no longer knows how to answer the phone or make calls, etc. He is still very physically healthy and ambulatory. He has had difficult behaviors throughout this disease and continues to have them.
There's been alot of changes partiularly within the last 2 years.
Lorrie, I will send to the top your post in December about the same thing. That way you can see more responses.
I would estimate that "moderate" lasted from roughly '08 through '11. Hard to say exactly what's moderate. He retired in '06 due to inability to function at work. Does that mean he was moderate in '06? I don't know. At the beginning of '12 we kissed moderate goodbye and have been on a slide through the various stages of severe ever since.
Brain injury in 2008 and FTD dx in 2009 (looking back it is clear that FTD came before the brain injury). Stopped working in 2009, but slower decline than many mention here. I have seen a great loss of energy, some memory, concentration problems, language problems. But while limited L can take walks, help with various household tasks, and is learning to play the guitar. No ADL issues.
As I read your stories, I can relate to so many similarities. CO2 DH probably had symptoms 2 -3 yrs ago. He started with memory issues, getting messages mixed up, irritability, losing things. At first, I guess I was in denial. He was about 62. I wanted to believe it was his hearing loss or maybe depression. Then he started to stutter,stammer and have difficulty finding the right word. His driving,which had always been excellent, was becoming "careless" so I thought. He forgot to signal ( I didn't realize he couldn't find the signal). He missed street signs, backed into something and showed poor judgement. I was becoming scared. As his speech problems increased ,he became nervous.. The daughters and I faced the fact that something was very wrong. He was tested at NY Presbyterian Memory Loss Center. His Mmse score was 13 /30 and much further testing led to Dx of atypical Ad in the moderate stage. He too. No longer knows the day, date and has no concept of time. He has trouble with the tv remote, house alarm, telephone and never used a computer.
On the positive side, he still is emotionally connected to me , family and close friends. He is affectionate and wants so much to continue to be needed and helpful. He is very frustrated about not driving and tells everyone he can't Drive because something is wrong with his brain.. We have decided not to tell him about Ad. He doesn't ask and I think one of the blessings of a late diagnosis is that his lack of reasoning has made that easier.
Everyday seems to bring so many reminders that things are constantly changing and not for the better. This is such a scary disease! I am so glad to have found you all to talk to and share our stories.
Lorrie, has your husband had a recent mmse done? If so, what was the score? Was it higher/lower than the one you mention? I, like others on this site, don't feel the mmse is always a good predictor of where they are in the disease. I am glad that he is still emotionally connected to you and your family. Enjoy the time he spends with you. It is a blessing.
Yes Lorrie it is SO different for everyone! Hubs was dx at age 46, was working full time as a HS teacher, he started losing student's papers, had trouble keeping up with the grading, trouble using the computer, occasionally would miss a button on his dress shirts, stopped wearing ties since he had trouble tying them in the morning, took so much longer to get stuff done than normal, lack of motivation and my once driven hubs became very apathetic. He also started to have trouble pitching balls to our baseball minded son. Dx at late stage 4, stopped teaching, drove for about a year after dx, but then got in a fender bender. That was 2 years ago and now I would stay he is stage 6, he can't dress himself at all, can not use the TV remote or his phone, needs food fixed for him, can't read, mixes up his words all the time and has great difficulty expressing his thoughts and feelings. He can not be home on his own and really needs assistance with all daily living activities, he can still use the toilet ok, but get a bit confuse with the process of what to do. It has really progressed fast for my hubs. It's so hard to know how to plan, I know. Still tells me he loves me every day! :) Hang in there!
Samismom22, my DH is at the same place your husband is and he seems to have the same issues and be declining at about the same pace. Our latest challenge is sundowning which, for him, starts about 8:30pm and can go til about 1p or 2pm. We are tweaking meds, hoping to get the agitation somewhat under control. I've got his name on waiting lists at two memory care facilities, but am hoping we don't have to go that route just yet. Good luck to you.
Samismom22 My heart goes out to you. You are both soo young. It is frightening to hear how quickly things can change.. I can't imagine how difficult it must be to have young children too. That must make it even harder to plan. I' m starting to realize although we all know we must plan , it is very difficult to do that given all the unknowns. Glad to hear he is still loving and connected to you. We all try so hard to enjoy each moment!
Lorrie, my wife and I are both 66. She was diagnosed at 63 after I had been observing AD symptoms for 3 years. But Clare kept acing the MMSE, so for 3 years she was being treated, incorrectly, for stress/anxiety/depression ... but not AD. When I was finally able to convince her to get a 2nd opinion, she was diagnosed with early onset AD at Mount Sinai in NYC ... but even then her MMSE was still 26! Fast forward 3 years and she is now in her 2nd year of moderate stage according to that Fisher scale you've seen others reference. Her patttern had been to fall off a cliff with a major decline, then stabilize for several months, then fall off another cliff with a new major decline, then stabilize, etc. Starting last year, however, that pattern changed and how it is like she is rolling down a hill ... her pattern now is a slow but steady decline. Slowly but surely, however, she is starting to show signs of stage 6 ... several episodes of incontinence, for example. Lorrie ... you have definitely come to a wonderful site. There is more collective wisdom here, between Joan's postings and the comments of those come here frequently, than you will find in most doctors' offices! Sorry you've had to come here ... but whatever you are going through, you will find someone who can help. I come virtually every day, even if only to read and not post anything.
My Dh is 73, dx in 2006, but I knew something was wrong long before that. He too kept acing the mm exams. But doc went with my gut and started him on alz meds in 06. He was stable for a long time. The past few months he has been on a steady decline. He has had a couple incidents of incontinence of B and B. He tireds more easily, not eating as m,uch. he still can do shaving and shower but I have to prompt him in there and keep at the door prompting him. He wants to do it himself, but i know i will have to intervene soon. Sometimes I send him back 3-4 times because he forgot to shave. He is so independent to be so dependent!!He forgets which bathroom is his, forgets where trash is, cant make his own cereal anymore. He was very healthy but at his last checkup, he was prediabetic and stage 3 kidney failure. We have another one this week, Im anxious to see results. I have been saying stage 5, but I think hes rapidly moving into stage 6.