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


Topic Is it possible to be the Perfect Caregiver?? Go to previous topic Go to next topic Go to higher level

By umajane On 2016.01.02 12:55
After reading and rereading Jane's post I wanted to write this one.
There are many negative parts to our day and many positive fun moments as well.
When I write on this caregiver board I want to be honest and helpful.
This disease is not always pretty or positive.
There are moments of sheer desperation and sadness. I can not be the most loving, perfect wife, caregiver or person 24/7. There are times in life not only PD life that there is negativity. I try to stay upbeat, positive and kind. For me it's not possible every minute of the day.
This board is great for sharing the happy moments and the desperate sad negative ones as well. I do not want to be judged by my every word.
If I have to be upbeat all the time this board is not for me.......

By Lynnie2 On 2016.01.02 14:07
My feelings exactly. Lately it is getting harder to be positive. My husband is experiencing confusion and hallucinations as you probably know if you have been reading the forum and next week will have a CT scan on his head to see if there is anything that could be causing it other than PD.
Last night he didn't even know my name, however after some prompting he knew me and this morning he was getting dressed so he could go home.
He was already home....... His mind plays trick on him he says.
This website should be to discuss our problems and we can't always be up beat if you are have serious problems.
We need support as being a caregiver is very tiring.
I don' t have help yet, but I probably will in the future......
The future...........what will that bring, eh? Hate to think about it.
If I am being negative please forgive me. I just hope and pray they can give him something to help this the fog he is in. Time will tell.........but in the meantime we just go day by day and hug each other in this journey we are on.

By sosad25 On 2016.01.02 15:04
I agree that it is sometimes almost impossible to stay positive. My husband fractured his hip and had replacement surgery he is now in acute rehab. However that isn't going very well as he is not able to do the amount of therapy that is required there. He is depressed and even mentioning suicide. I go there at least 2 or 3 times a day but I feel like he mad at me each time I am there. We will be moved to a skilled nursing/rehab on Jan 8th and I am trying to be encouraging and say that he will get better, walk again and be able to come home. The reality is that I don't know if that will be the outcome and I too am depressed. I try not to be negative when I post on this forum but it can be pretty hard when your entire life revolves around caregiving, doctors appointments, worry, etc. Maybe we get negative because we KNOW that the situation isn't going to get better -only worse. I love my husband but does this situation make me frustrated, angry and depressed-YES!. Our PWPs have certainly lost so very much but we have too. I can't be all sunshine and flowers in this situation. Sometimes making the best of it just isn't enough to take away the sadness. I think I'm rambling so I'll sign off. Need to go back to the rehab.

By jcoff012 On 2016.01.02 19:24
Jane, you know I value your opinion, and I know you value mine. I asked for comments, and I am glad you did. I, too, get excruciatingly tired and sad over all of this...in our case, tomorrow is a perfect example...

We leave here to drive to San Francisco for a Monday morning Neuro appointment because it is a two and a half hour drive one way. So, we drive up the day before, get a hotel that is over priced because it IS in SF...go to the neuro after a restless night's sleep, then drive the 21/2 hours home...up the next day for my shots in my eyes!

So, maybe I asked that question after a similar time..We have no choice but to go to SF because there is no neuro who specializes in PD within 175 miles of where we live!

As I said, if my post was perceived as condescending, I apologize...I just am wanting to say sometimes life is harsh, but we need to keep trying to hold on...maybe it istoo simplistic to say I believe that love IS there and always will be, even when life makes it so difficult to find.

No one should EVER take a post personally, that is the point of the board...take what you can, get the help you need, and ask and answer others as best you can...

Much love down the road...vent, scream, but know no comment from me is EVER directed towards anyone personally...ever...Jane

By umajane On 2016.01.02 19:38
Jane, Thank you for clarifying.....I wish you a good trip to the Neurologist. It's a big trip and a lot of effort but worth it I am sure. Drive carefully and be safe.
Jane

By carman96 On 2016.01.05 10:28
Well, I put in my 2 cents on the other post.
I do feel I cannot say things here that I can say on the other group. Heaven forbid that a person who is struggling does not get the support they need.
You never know what your unsupportive words can do to a person who is already down.
I wish everyone well.

By umajane On 2016.01.05 11:10
Carman. is it possible to share the name of the other support group. The dementia is becoming very difficult and I need some help. Thank you. Umajane

By makrivah On 2016.01.05 11:23
I will continue to be on this forum, but would like to know of others as well. Please share with me also, thank you.

By carman96 On 2016.01.05 11:54
The other group is on Facebook. It is a private group so you have to be invited. Caregivers only.
If you Private Message me on Facebook I can ask the administrator to add you. Carole Manley, Murphys CA

By 839Ellen On 2016.01.06 13:42
I find it so helpful to read all the comments on here. Even when someone has to complain about an issue that is going on in their life, it can help someone else who may be going through a similar situation. I am grateful for all the information and advice. Ellen


© 2003-2016 MyParkinsons.org · Privacy Policy & Terms of Use
Published by jAess Media. This website and Forum is sponsorsed by people like you