I made the trip with Gary last week to Mass General in Boston, about 2 hours from where we live. We rode in a handicapped van. Gary was extremely alert, maybe too alert throughout the day. He literally babbled from the time I met him at the NH ( he cried when he saw me) around 11:30 until I left him back there around 6:30 at night. How exhausted he must have been! I sure was, and I wasn't talking the whole time.
It was a very tiring day, and it ended pretty much as I anticipated. The neurologist said that the Dr's had done a very good job of making sure nothing treatable was missed, and that there really wasn't anything else that could be done. He did offer to check into further genetic testing to try to put my fears to rest about the boys' futures. And he gave me paperwork on autopsy (brain donation). I guess the "good news" is that now that he has been there, they will do an autopsy free of charge.
I left feeling pretty hopeless. With no more information really then when I started.
I think Gary was aware of what was going on. When the Dr. brought up Advanced Directives, he blurted out "shoot me". That was probably the low point of the day for me. It made me realize how miserable he is when he is "awake", not under the influence of calming meds. I think he really understands more than he seems to.
I just can't fathom that I won't know what happened to him until he's gone. Maybe not even then.
I wonder lately if he isn't bettter off being sedated. His quality of life is pretty much zero at this point. I can't stand to think of him being in pain emotionally, knowing what he's lost, maybe even missing us.
I might ask the Dr. to up his meds. I don't know, I'm torn at this point.
Bless you, Kelly. What a tough situation. Thank you for bringing us up to date. It's probably small comfort at this point to know you've done all you can with doctors and testing. It's heart-rending when they know they're having problems. Sending gentle ((((hugs)))) your way.
Kelly, thanks for your post. What a tiring day for both of you, and sometimes so discouraging. So sad that he's so aware of his situation. Hope you'll both feel more cheerful soon and find some (small?) joy to share.
Kelly, If you don't mind, what tests were done on your DH? I have had the questions test done on my DH as well as blood tests and an EEG. In our area there is no further testing and I will have to go to UCLA or UCSF for more detailed work and scans. My DH is capable in many areas.But he is forgetful in recalling where places are, appointments, and some things like that. But he can dress himself, shower, read papers and watch TV, I don't let him drive. I often wonder how much he is aware of his situation. I walk on eggshells sometime not quite knowing what to say.
Gary had CAT scan, numerous MRI's, including the last one, which was a more high def, "weight bearing" (I think that's the term for it) MRI to rule out Crutzfeldt Jakob Disease (aka "Mad Cow Disease").
He also had a SPECT scan, and a PET scan, a couple of EEG's, which were normal, and a lumbar puncture, and neuro-psych testing.
It seems like a lot when I list it out like this, and yet I'm no closer to knowing what specifically is wrong with him than I was when we started.
It sounds like your DH is in the earlier stages. Hopefully, he won't deteriorate as quickly as Gary did. Gary was aware of the disease from the time he was diagnosed. He kept saying he was going to beat it. I'm not sure how much he really believed that.
He participated in a drug trial, but we stopped before it was completed. It seemed to have no real affect on him, for all we knew he was getting placebo, and the two hour trips were too much for both of us, especially once he became incontinent.
Sorry I'm not more encouraging. I really do not think Gary has AD, but some other form of dementia. I think AD would have progressed more slowly, even the Early Onset form.
I am one that strongly believes that keeping our LO's free from emotional pain is as important as keeping them free of physical pain. I believe we are their advocate to accomplish that when our LO's can't speak for themselves. No one should spend the last phase of their life in either pain if it can be prevented or minimized.
We also went to Mass General for my 53 yr. old husband. He is now living in a ALF. We also have 2 boys and have not gone down the genetic testing route...if you wouldn't mind sharing...what are your thoughts on the genetic testing? Our boys are 17 and 23.
Thank you ,Kelly, for sharing the details of the testing. Our neruo said he would set these tests up for us as well as any second opinion we might want but as I said we would have to go out of town. We can get MRIs here but maybe not that type you had done for your DH. He also told us how physically exhausting it all is and in his opinion the diagnosis would remain the same. That and the fact that no certainty is available unless autopsy is done later. It rather seemed like, unless the memory impairment had a violent component, it really doesn't matter what the title is as dementia can only hope to be slowed down. My hubby is rather early on in the progression. His other complications are more troublesome to me, such as shortness of breath. But he is cheerful and willing to do things to help ( but his aerobic capacity won't really let him) so I am grateful. The one thing I do miss is our conversations that had depth. We talk about the price of groceries or things like that but things I know he cared a great deal about now it's just sort of a shrug of the shoulders kind of thing. I have tried doing the jotting things down about his condition but like someone else mentioned I think I need a log on the computer to just print out.
I feel like I want to pursue the genetic testing, maybe as much to get answers about what this is (i.e., whether it is related to his brother's genetic MD), as to determine if it could affect our boys. The neurologist warned me early on that if the boys got tested, it could affect them down the road (employment prospects, ability to get insurance, etc.). The geneticist told me flat out that they don't test kids, which I suppose I can understand. I wouldn't drag them to the Dr. to be tested at their ages, anyways. If they were adults though, I suppose I would leave it up to them. I would want them to have the facts, in case it could impact their decision whether to have kids or not.
Mimi:
I know exactly what you mean about missing conversation. The loneliness for me is crushing, and I have a house full of noisy young boys!
There is so much I miss, but just talking to him is probably what I miss the most. That and his strength. He pulled me up when I was down on myself. He was the optimist when I was pessimistic and negative. Now I just feel lost so much of the time.