DH had his appt. with the neurologist on Mon. The NH sent him on a bus and his brother and SIL went with us. It was awful getting him there. The NH wouldn't put him in a wheelchair, because his stiffness could cause him to fall forward. Fortunately, they agreed to send an aide. She and I had to hold him up on each side and walk him onto the elevator, up to the 4th floor, down the long hallway to the Dr's office. What a spectacle we made. The office was so much more crowded than usual. The neuro put in an order for him to be sent on a stretcher in an ambulance next time.
Anyways, the neuro couldn't believe how much DH has deteriorated over the past few months. Even since he entered the NH in Nov., he's gone steadily downhill. He can barely speak. When he talks, he doesn't make much sense. He is rigid, shaky, has Parkinsonism, can't walk unassisted, can't feed himself. Yesterday, I found out he's down to 140 lbs. (he's 6'2").
The neuro now suspects he may have Creutzfeldt Jakob Syndrome, which is a variant of "Mad Cow Disease". This has really thrown me for a loop. I know the chance of him actually having "Mad Cow Disease" is pretty remote. He could have the sporadic variant, which is still very rare. The neuro said it doesn't last more than 5 years. At his present stage, the chances of his lasting 2 years are less than 50%.
The EEG didn't show signs of CJB. Now the neuro is researching a lumbar puncture test that could indicate whether he has this or not. Other than a brain biopsy, there is no real way to know for sure until autopsy.
Sorry to be so grim. I've been a mess all week. I find myself missing him as though he hasn't been gradually slipping away over the past few years. I don't know if it's just really hitting me or what. I just can't stand the idea of his being gone, even though so much of him is already gone.
I stayed home the day after the Dr's appt., stayed in bed most of the day til I had to pick up the kids. I feel like climbing into a hole and not coming out. I wish I could.
I know it could be something else. He could be having the rigidity and shakiness due to the Haldol, but the neuro said he would have had to have a really high dose to have it affect him like this. He was only getting 1 mg. twice a day, which the neuro had prescribed to help with his agitation back in Nov. He's totally off of it now, getting Parkinsons meds.
I know this is long, but I haven't posted in a while. I just feel lost, don't know what to do. No matter what the diagnosis, the prognosis is grim. Still, though, I feel like I need to know what it is.
Kelly, so sorry you are having to go through all this. That was terrible about the bus ride in his condition. I know what you mean about finding out if it is AD or something else. I keep trying to decide if I should take dh to the Neuro this year. Maybe there will be a diagnosis change we should know about.
We don't mind the "long". We are glad to hear how you are doing. Keep posting.
I hardly know what to say except I'm so sorry you and your dear kids have to endure watching what your DH is enduring physically. I'm sending up prayers for all of you, for peace and comfort.
Kelly - That is how last summer went for us. We had an AD diagnosis and that was bad, but manageable. Everything tracked just like everything I could read about AD. At the beginning of the summer pain showed up. It was transient and my DW was unable to explain how or where the pain came from. It lasted about an hour and a half per day, then we were back to regular stage 4-5 AD. While trying to figure out the pain, we stepped into some time accelerator. Moving quickly from 4-5, to solid 5, to 5-6, to mostly 6. I was looking at hospices. Finally went back to PCP for a followup visit after she had seen DW 30 days earlier. DW could barely walk, could not stand up unassisted and looked like hell. PCP put her in the hospital immediately. After 12 days of torturous tests, it was determined that she had small cell lung cancer, metastasised to all her bones. Oconolgist thought dementia was a result of cancer only, not AD, then cancer. The timeline does not support this. Untreated small cell lung cancer would have killed her much earlier. It was difficult to detect and diagnose. There were no masses; all tests (Xray, CAT scans, MRIs) came back normal.
DW has responded well to the chemo. She's gained her weight back and appears to be in good shape physically except for loss of hair. On Feb 2, we get a CAT scan and bone scan that will be the baseline to see really how effective the chemo was. Statistically, prospects are not good. Average life span is 10-12 months from diagnosis, and we ar 3 and a half months into that.
The point of all this is the uncertainty of diagnosis and the seemly endless tests are brutal. You must be strong and cannot be shy. Be a force for your LO. Many of the technicians and professional staff will treat your loved one as though they have the ability to reason and follow directions. On the MRI where they did successfully kick me out, they came back and asked me to please come back in and make her be still. Remember you are the customer, you have a say in how things go. It behooves you to be nice, but don't let them treat you like an unknowing civilian. You are engaged and know things that they do not. Good luck.
Kelly, I'm newer here and don't post much. But, I have to reach out to you and let you know my heart aches for you. I think things are bad but, I don't have kids and DH is still home with me. This dementia, no matter what the name on it is, is just horrible. I've read many of your comments and know you are a courageous and loving person you are. You're in my prayers. Nancy
Oh Kelly, Yet another thing to add to your already crazy plate full. I am so sorry, I am sure that not knowing what is going on is a lot of why you feel so lost. As caregivers we want to fix everything. And having control out of our hands, leaves us feeling lost. You truly need some time to yourself for a break from all of this, I swear I don't know how you do all you do. Of course your going to miss him when that time comes. You love him, You spent years loving him, he will always be apart of you. Each person finds their own way to deal with their loss, for me knowing that my loved ones are at rest and not in pain helps me. Believing that they are in a much better place has always brought me comfort. As far as missing Dh when that time comes, I don't know how or if I will be able to deal. I just hope that all that I believe and know will help ease the loss.
Years ago, I went thru about a 6 month period where I lost 3 very special people to me. All very young, trying to understand the meaning of why I came across a book that was wonderful in helping me find peace. If you would like the name, let me know. Robin
I'm so sorry you are going through all of this. That bus ride had to have been horrific. Please accept my prayers for peace and comfort. Hopefully, things will improve.
Oh dear Kelly, the bus ride and trying to walk with him down a long hall in his condition .....I just can't imagine! Our thoughts and prayers are with you. Please keep us posted on how things are going. {{{{HUGS}}}}
Kelly, I too am so sorry to hear of all you, your family and your husband are having to endure. If I may be frank, I am wondering why his neuro would want to put him through more tests when the only true way to know would be an autopsy. The VA wanted to continue running tests year after year, finally I firmly stated no. Enough is enough. I could see if there was something that could be done to help him.. but there isn't.. why subject him to it? I know very little about Creutzfeldt Jakob disease, what I do know is scary and I am so sorry you are having to face this. ((hugs)) Nikki
Kelly, So sorry to hear your DH continues to decline. in some cases the younger persons do decline more rapidly. i cant imagine CJ disease. i had also wondered about it with my DH because we visited England in the early 80's several times when the big outbreak occured there. not many people had knowledge of it back them and it takes many yrs to manifest itself. my DH was one that enjoyed the delicacy dishes as well and that even put him more at risk-but he has lasted so long and so symptomized so slowly i put that idea to rest after the pet scan and vascular dementia dx- please try to take care of yourself and your children during this stressful time and let us k now how you are doing when you can-Divvi
Hi Kelly, I am sorry to hear of the decline of your husband. My DH spent 25 years as a meat cutter and we went through the probable CJ disease dx as well. It was quickly ruled out once his symptoms did not match the rapid progression of CJ. I am praying for all of us to see the day a cure is found. My thoughts and prayers are with you.
I am so sorry to hear about all that you and your family are having to endure.Your LO is so fortunate to have you to advocate for him and care for him. You see your LO as a person that was once very vibrant, alive and caring. Now, unfortunately, he is seen as a room number or a diagnosis. I can't imagine how you are managing. Thank you for sharing and giving inspiration to us all. You will my in my prayers for your strength and hopefully a little peace.
When trying to find a reason for my husband's memory loss, he had a lumbar puncture, among many other things that he could have was CJ Disease, that was about 5 years ago, if that would have been the case he would not be here now. Seems like some test positive for many things. I too wonder why his Neurologist would have him come to his office in such a terrible shape. Kelly, please know you are in my thoughts & prayers.
Kelly, thank you for letting us know how things are going. I am so very sorry, this must be so horribly stressful for you. You are in my thoughts and prayers.
Kelly, I have been thinking of you and sending blessings for you and your family. Please let us know if there is anything new. Take good care of yourself....M