I hope everyone had a peaceful, somewhat enjoyable holiday.
I think I mentioned in my last post that I wasn't able to bring DH home for Christmas. He has continued to deteriorate rapidly over the past month and the Dr. and nurse practitioner advised against bringing him home. After seeing him today, I know I could never have cared for him at home even for a few days.
He is pretty much confined to a chair now. He's so frail. He can't feed himself or speak coherently. He is shaky too. The NH neurologist who saw him on Wednesday said that he suspects AD with Lewy Bodies, which I've heard of, but no one has mentioned in relation to DH before. He has Parkinsonian symptoms, but not necessarily Parkinson's Disease. He looks like he is nearing the end of this, I don't know. I can't see how he can continue this way much longer.
This afternoon, while the boys and I were visiting, he suddenly started having spasms; it looked to me like a seizure. I got very scared and rushed for the nurses to check on him. They checked his vital signs and he was ok. When I got back to the room, he seemed back to "normal". They said it's probably hallucinations, but I know what hallucinations are, and that did not seem like a hallucination to me!
I'm planning on talking to the nurse practitioner and maybe the Dr. tomorrow to see what they think. Maybe he should have an MRI to determine whether he is having strokes or seizures?
The Dr. attributes some of these symptoms to the Haldol. I feel terrible for allowing him to be put on that while he was in the hospital, but he was agitated at that point and wandering all the time. They gave him Haldol to help him sleep at night. When he came home from the hospital, I needed it because he was so agitated! Then he was admitted to the NH and I let them continue with it; they have gradually weaned him off, but he continues to receive it at night to help him sleep. They say they can't just cut him off cold-turkey. He has to be weaned off it. I can't see how taking him off completely could result in worse symptoms than he's experiencing now!
Do you think he should have another MRI? He just had one a little over a month ago when he was in the hospital, which just showed AD progression, but he was not at all as bad as he is now. The seizure scared the crap out of me today. I thought, he's having a stroke, this is it!
I took the kids to see his mother, brother and SIL yesterday. It was very hard. It was so strange to be there without him. It felt like he's already gone.
Sorry to ramble on, but my head is spinning. I keep thinking the Haldol was a mistake, maybe the NH was a mistake, although I can't imagine having him home now. How can someone deteriorate so rapidly?? He was just diagnosed a little over 2 years ago, and he seems to be nearing the end. I don't know how to live without him.
kelly, I am so sorry you are going through this now. I understand it was heartbreaking. Haldol does effect people in weird ways so I have been told.
My husband has Parkenism/AD and VD and spinal stenosis. Sometimes I think he has Lewy bodies. He has started jerking quite a bit. Somewhat like someone with MD.
Is he on aricept and namenda? we are all thinking of you a lot. God Bless.
Wow, Bluedaze, it never ceases to amaze me how quickly I get a response when I post.
Thanks for your kind words. DH is way too young for this. He's only 54 but looks at least 74.
I need him, but I can't bear his suffering like this. I will probably re-do the advanced directive soon. I don't want him to be kept alive with machines if it comes to that. I don't think he'd want that either.
One of the last coherent things he said to me is that I'm the "love of his life". I miss him so much.
He has been on Namenda for the past two years. He was on Razadyne, but I took him off when he seemed to have digestive problems. His neurologist said that the Namenda doesn't matter anymore, has no real effect. He is on an antidepressant, since he was having bouts of crying when he was in the hospital. I just can't believe how much further he's declined in only about a month.
Kelly5000: I will keep you and yours in my thoughts and prayers. My hubby has declined rapidly as well, but remains at home. God Bless you, girl. You're in my prayers.
Kelly, I am so very sorry. Please don't try to second guess yourself on his medication or his treatment at this stage. Putting him through another MRI (which are difficult if they are shaking - my husband had difficulty having his last MRI because he couldn't stay still - and we really didn't learn much) might be more stress than he needs right now. I know that you need him and don't want to let him go, but remember he is going to a better place and will be free of this disease that has destroyed his mind. Don't feel guilty. Remember that you are the love of his life and have done the best you could for him. My prayers are with you both.
Kelly, it does no good to second guess the decisions you made. We all try to do the best we can, with what we know when we are making decisions. Sometimes what we choose makes things better. Sometimes nothing can make things better. Try to take care of yourself too.
Kelly, I am so sorry you & your children are dealing with all these issues at such a young age. As others have said, please don't second guess the decisions you have made. You are in my thoughts & prayers. Please take care of yourself, your children need you.
Haldol is commonly prescribed for agitation, for acute situations needing immediate control (e.g., sundowning). You are certainly not to blame for agreeing with the doctor's prescription. Like any of the other meds that are suggested for AD patients, the only thing we can do is make our best guess and go with it.
However, like any other med, Haldol can have serious side effects. I would definitely talk with the DOCTOR about what happened asap.
Haldol can cause seizures. The advice I'm seeing on the web is that if the patient has convulsions (seizures), to stop the haldol and get emergency help.
It can also (more commonly) cause muscle spasms, especially of the neck and back; the doctor should be notified as soon as possible if this happens.
Kelly, my husband first had seizures - or fainting spells or what have you - nine years ago. The US Attorney General had something recently, remember? It just happens. It's scary if the kids see it of course, but although I think you should let the doctor know about it, and work to get him off the Haldol, another MRI won't really show anything that would be beneficial, would it?
Do not second guess yourself or feel guilty - you could not possibly have cared for him at home, and you have your children, as well as yourself to think about. You did the best you could for him for as long as you could.