For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in


Topic 'I am deteriorating..." Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2016.08.01 15:02
Carl said this to me two days ago, and my heart broke.

A few months ago, I noticed that he was swaying badly if he tried to stand in place next to the kitchen counters. Then, lately, he has begun to weave and sway more and his tremors are more noticeable on his right side...which means he has them on both sides now.

In other words, he IS declining, after almost nine years. My "former" Marine is facing his hardest battle, but has finally stated out loud that he is losing the fight.

I guess this means that when we see the neurologist at the end of September, there will most likely be noticeable changes and changes to his meds. We are both trying to cope with the future and to remain upbeat, but we know the reality. We know what is coming, better than most...we both remember his Mom's struggles.

I have learned from Carl that HE wants to guide himself through this disease. He knows we are in this together, but he has to face PD on HIS terms.

I guess I am on here because I wasn't sure I did the right thing in response to his devastating comment: I said nothing. I didn't react. I let him say it out loud for the first time. But, SHOULD I have commiserated or tried to make him feel better? I just looked at him and gave him a long hug...no expectations of more...just a hug...should this have become a 'discussion'?

We are a very affectionate, vocal couple, but I feel strongly that he needs to go at his own pace, in his own way. I just feel a tad uneasy. Any ideas?

By mylove On 2016.08.01 15:26
I think you handled it just right, Jane. He will come back and talk more when he's ready.

My hugs to you too. We seem to be on the same path.

By flowers12 On 2016.08.01 15:35
I'm so sorry you're going thru this. My hubby told me recently that he is really going down hill. I too hugged him and just told him that we will do the best we can. It's so darn hard to see our loved ones start to disappear right in front of us day after day knowing there is nothing that can make it better. I really can't imagine how much more difficult your journey is having already gone thru it with a family member.

My hubby has more pronounced tremors now in his left hand and now beginning on his right too. This is 8 1/2 years with PD.

I don't know what anyone can say other than you love them and will be there for them.
HUGS and prayers.

By VioletV On 2016.08.01 17:17
Very similar reaction here. My PWP husband says "my mind is going." I don't contradict this -- it would, I think, make him feel that he was crazy and that I didn't understand his distress. When I hear his expressions of fear and worry I just tell him "I'm in this with you -- you won't have to deal with this alone. We will figure things out together." That plus a hug.

The brutal reality is that they are, ultimately, alone to deal with PD and we cannot have it for them. We can help them bear up.

VV

By lurkingforacure On 2016.08.01 20:25
I too think you handled it just right. And hugs are the best:)

I am coming to believe that simply being there for my husband is the real, most important, role in all of this. Not running the household, keeping up with meds/doc appts, raising the kids, or working, but simply being there to remind him that he is loved and never alone.

By carman96 On 2016.08.01 21:22
I think the hug with no discussion was the best thing. He will bring it up again if he wants to discuss it.
My husband with his dementia has no way of coping with PD. He is not capable of understanding or discussing how he feels.

By LOHENGR1N On 2016.08.02 00:18
Wow, how did you "guys" all become so wise? Yes I believe a hug and I'm here/not going anywhere is the best way to handle these things. If We want to discuss it we'll bring it up again maybe with a do you think a little adjusting of medication will bring some back for awhile kind of thing. You smarty pantses were stellar in your reply's!

Carman, If I may? Sometimes I've discussed dementia on here and being an eternal optimist I try to see the side of things some may not. Reading your response I feel your pain and sorrow. Especially in your husband has no way of coping with P.D. understanding or discussing how he feels. At times I've said maybe it is a blessing when it happens. As we the patient become unaware of any life before P.D. to the loved ones, spouses and children it's normal to grieve the loss of the way it was to sadden over the memories wiped. But it is us who have those memories of better times the patient doesn't so they don't dwell on them we do. Maybe it is some divine plan put in play as a coping mechanism for a patient to just remember or think this is the way it is the way it always has been a life of P.D. and not grieve or miss our life before Parkinson's. I don't know I don't have or know all the answers. I'm still working on learning answers and trying to help if and when I can. It's just another view of things and maybe with that view some can find a little ray of sunshine to brighten the darkness and lighten a burden for just a little while.

You people make me proud to call you my friends every one of you. Hang in there!

By jcoff012 On 2016.08.03 14:03
I appreciate all of your comments. This disease makes us constantly question, doesn't it?

We had an eye opener today, in fact. Two mornings in a row, we have had very low tire pressure when we got in the car. So, today, we went to a local tire store. They pulled two of the tires to show us why we need to buy new ones, but more importantly, why NOT to drive any further than up the street to home! My point of this?...*I* have been complaining for two weeks that the car was riding poorly, but *he* kept saying, I was wrong! I kept saying we needed to take it to somebody, but *he* kept insisting it was "fine". Well. It wasn't and I am glad they can help us out. We just got home and the first thing he said was, "I guess I should have listened to your instincts more...seems I get unreasonable quicker now. I AM sorry." Like I told him, it's over and no one was hurt, that is all that matters. Next time, who knows what will happen? PD rears its ugly head unexpectedly...ugh!


© 2003-2017 MyParkinsons.org · Privacy Policy & Terms of Use
Published by jAess Media. This website and Forum is sponsorsed by people like you