It's been awhile since I've posted, and I just thought I'd check in.
Gary is physically stable right now. He has been in the nursing home for about 15 months. It still blows me away that he walked into the NH in Nov., 2008, still able to talk to me and feed himself, and within a couple of months, he was no longer able to walk, couldn't speak coherently. He is now unable to do anything for himself. He is wheelchair bound and speaks gibberish, is on a pureed diet, has to be fed by the staff. He has been crying a lot over the past couple of months. I reported this to the NH Dr. and he increased his anti-depressant. I think it might be helping; I saw him tonight and he didnt' cry at all. I couldn't tell if he knew me or not, but he babbled constantly.
I find myself switching back and forth between despair and anger lately; despair that my husband is "gone" essentially, and I'm left as the sole parent of 3 boys, who need their dad. I feel so alone, even though I have a full, noisy house. My two sisters help so much with the boys; I don't know what I would do without their help. I have to work full time, so they are basically helping to raise them. I feel guilty, as though I am not able to raise my own kids, but disability isn't enough; we need the income. I think that they are doing better since we moved to our new house in the country (very near where my sisters live); they have friends, they love their schools. Our 9 year old seems angry and depressed a lot of the time, but we have found a good therapist, and I think she can help him express and deal with his feelings. He has an appt. with a psychiatrist to see about getting on an anti-depressant, at least for awhile, so he can benefit from therapy; I hate that this is how things have ended up, but I want him to be happy and better able to cope; I hope we're on the right track.
So that's where we're at. I made an appt. to see Gary's neurologist next week. I feel like I just can't leave things this way, not knowing why he's in this condition, knowing that it's probably not AD, but there's no real diagnosis (possible Lewy Body Dementia, but no way to know for sure). I can't just wait until he passes to know why he ended up like this in such a short time. I feel that there is a genetic component; I don't believe that his brother's neuromuscular disorder (diagosed as Myotonic Muscular Dystrophy) is unrelated to Gary's neurological condition. I believe that there is a genetic factor that affects the males in the family (Gary's brother's son also has MD. Gary's two older sisters are fine.) Of course, that makes me worry about our boys. It's hard to imagine that any one or all of them could end up like this someday.
I know that people get AD at a younger age (Gary was diagnosed at 52). But I just can't believe that AD can progress this quickly. I need answers. I feel like I need to do something, but I don't know what, or if I'll ever get answers.
It is so good to hear from you, even under such trying circumstances. You have nothing to feel guilty about - you are doing the best you can under horrendous conditions. And it sounds to me like you are doing a great job - making sure that your son is getting the therapy he needs is very important, working full time, taking care of 3 boys, and seeing that your husband is getting the best care. You deserve a gold medal in the Alzheimer's/Dementia Olympics.
As for feeling anger and despair - you have the right. So much has been taken from you at a young age.
Yes, unfortunately, AD can progress very quickly, especially in Early Onset. There doesn't seem to be a scientific answer as to why it progresses faster in Early Onset than older onset, but it definitely does.
We all understand what you are going through, and are here for love and support.
kelly5000--I don't know a great deal about Myotonic MD, but I do know very few of the MDs and related neuromuscular diseases have a related mental deterioration. The fact Gary's brother and his brother's son both have MD, would possibly indicate a genetic connection. If no previous family members have it, it could be a new genetic error. However, genetic testing would be able to tell if it is inherited and Gary's sisters could know if they might be carriers. Some kinds are inherited through the mother and passed to the sons...or not. You could contact the Muscular Dystrophy Association Clinic in your area to get this clarified for your own peace of mind regarding your boys. I don't think you need worry about MD and your boys. I would focus on any definitive information you can get on Gary's Dx as some of the Demenias are or can be inherited.
Kelly, I have nothing substantive to offer but hugs of compassion and empathy for what you are going through.I can tell from reading your post that you are a bright and caring mother and wife and you will get through all of this. Please continue to check in as you have time. We all care and want to know how things are going. Grab onto the rope and hold tight.
Kelly, thanks for checking in; it's good to hear from you. You are doing a great job, and I'm sure your kids will profit from having such a strong and resourceful mother. You'll make it!
Kelly, I am glad you have help from family in raising your boys. As others have said--you certainly have nothing to feel guilty about. Having a job has its benefits beyond the monetary compensation--I think it gives your mind something else to deal with besides the illness and certainly can lend your life some normalcy, now and later on. My MIL was in a similar position with two children in the home and husband dx with dementia in his 40's. I think her job helped her pull through--she worked until she was 80, by choice in her later years. Hang in there.
Kelly, thank you for letting us hear from you. You've got so much on your shoulders, but it sounds like you're doing a superhuman job of dealing with all of it. Please do stay in touch.
Thank you all so much for your caring words and support. I'd almost forgotten how much support and compassion there is here. I'll try to post more often. It does help.
At least I know Gary is not a carrier of the MD gene. We had him tested for that when I was pregnant with our oldest. It just strikes me as odd that two sons in the same family have neurological and neuromuscular issues that have a strong genetic factor. There may be a connection no one has discovered yet. Or I could just be grasping at straws.
I certainly don't feel like I do a good job much of the time, but it helps to have so much encouragement. I have to remind myself that the boys are reasonably happy under the circumstances, and that I am helping to support us. I think I've done the best I can for Gary in terms of his long term care, but no situation is perfect. I would have preferred to keep him at home, but I know that's not possible.
I'm looking forward to meeting with the neurologist next week, to see if there are any other resources of information/research that I've missed. I'll keep you posted.
Kelly----If you were able to go back in the family tree, you'd probably find that the neuromuscular gene came from one family line while the neurological gene came from another family line. At some point, one person from each family line met and married and now both genetic conditions exist within your family. Unfortunately we often can't go back too far tracing medical/health issues before running into family members that no one knows about . . . or someone carrying a specific gene (that was passed onto their young child) may have died at a relatively young age before showing any signs of the actual condition. I know in my family geneology, I can go back 75 years and there are great aunts and great uncles that moved away and contact wasn't kept up with the larger extended family . . . and one family member had a falling out with siblings and cut off further contact with that side of the family.
Kelly, its good to hear from you. sounds as though DH is progressing very fast and like they say some dementias go faster than others. i know thats no consolation when its yours moving quickly. you are doing a tremedous job of holding down the fort at home. 3boys in itself is a huge amount of work. pats on the back. let us know how you are doing time to time- divvi