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Topic Update on Michael Go to previous topic Go to next topic Go to higher level

By JulieB On 2014.07.14 08:48
Hello friends. My husband Michael has had some pretty steep declines in the last few weeks, and after being home for over two months, was re-admitted at the Veterans Home in our area a little over a week ago.

Now that we know that the dementia that goes along with the Parkinson's is Lewy Body Dementia, we can better understand some of the strange things that kept recurring with him. The last and most severe episode was dramatic. He had been okay in the morning (walking on his own with us using a gait belt), chipper, enjoyed a good breakfast, was fairly lucid even though it's often impossible to understand his speech. After breakfast we were walking to his chair and within about a minute, an invisible veil of sorts came down over him and he began to hunch over more, his walking slowed and eventually stopped, and he seemed in a daze and couldn't respond to us at all. He began to slowly sink to the floor and had I not been holding on to the gait belt he would have fallen. He was in a semi-conscious state, eyes open, looking around a bit but unable to answer us or move himself, for about 20 minutes. It took all the strength our daughter Sara and I could muster to get him to his chair once he sort of came to. He has had these varying degrees of cognition before, but not like this.

Michael's hallucinations have grown more frequent and detailed too, which is a hallmark of LBD. For those of you going through this, you know how heartbreaking this is. He kept asking me why I had put rods all over the floor because it was hard to walk with them there. He has seen monkeys everywhere. He informed me of a kidnapping plot he thought people were planning, etc.

I know some links about Lewy Body (that often accompanies Parkinson's if there's a dementia component) have been posted before, but for anyone new, here's a link that might be helpful:

http://www.lbda.org/content/symptoms

Even though I know the care he is receiving is better than I was able to give him on my own, I still struggle with the decision, just as I did before. It all seems so clear when we reach a point where we just can't safely care for someone anymore, and then once the move takes place, the sadness and second-guessing rush in.

Just in the last week, Michael has taken part in so many enjoyable activities at the Veterans Home. They pamper the men (not all VA homes are like this, I hear -- we are blessed) and this helps me probably more than it helps him.

But the sadness and emptiness are pretty overwhelming right now. I know we will get through this. I'm grateful to be able to share with those who understand. xoxo

By Mary556 On 2014.07.14 11:02
dear Julie, I am crying and praying with you.

My Mom has had two of those extended episodes of unresponsiveness. the first time we thought it was a stroke. the ER doctor used the words "locked-in". almost a year to the day later this happened again. both times Mom's DX was dehydration and "altered mental status".

It must be so difficult for you now, all the decisions and emotions.
I am missing my Mom so much this week she has not been at home, but know it is so much worse for my Dad. It is painful to see your spouse, the love of your life, go through this. I hope and pray for the best for your Michael and yourself.

By moonswife On 2014.07.14 22:31
Julie, B strong,
I empathize too. My Micheal had similar last week and was hospitalized with dehydration, low potassium, kidney stone, UTI all contributing. Today a urologist ordered one more RX, but took out foley cath. Good and bad news. We love our men, we would take a bullet for them, but sometimes we just CANNOT do enough. I will pray for you extra tonight. In fact, I think a lot on this board will.

By Mary556 On 2014.07.14 23:24
moonswife, I will pray for your husband, too. God bless you both.

By carman96 On 2014.07.15 08:36
Julie, I'm so sorry this has happened.
Bless you all who have a PWP in the hospital. Wishing all of you peace and strength.

By Marilyn-NJ On 2014.07.15 11:53
Julie - I'm so sorry. The commonalities of PD are just mind boggling. Sometimes, we reach a point that we just can't do the caregiving routine ourselves. While we prepare and try to ready ourselves, it's just not that easy. I know that "facilities" take away our daily burdens, but, yes, other concerns take the place. It is what it is? I have no answers to ease your pain but know that I, and many others, share it with you.


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