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Topic Excellent book by PD doc Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2015.01.26 21:51
Recently we lost to PD (with Lewy Bodies) an esteemed cardiologist by the name of Thomas Graboys. You may have read his book: Life in the Balance. I have not, but intend to.

If you ever feel angry, put-upon, trapped, frustrated, like you simply are at the wall,...or sad, depressed, hopeless, guilty that you cannot help (and we all have and do, every day, sometimes several times a day), try to remember what it is like for the patient. Here is a writing from Dr. Graboys, it is exceedingly articulate, and really tells it like it is for the one with PD. It quickly brought me back to reality. Here's the link:

http://www.lbda.org/content/finding-hope-midst-despair-my-decade-pd-lbd-grayboys

By VioletV On 2015.01.27 11:19
Oh, Lurking,
Thank you so much for this. If you substituted lawyer for doctor, and sailing and riding for tennis and skiing, you would have my husband's story.

He asked me today "do I ask you to do too many things that I could do for myself?" And we talked a bit.

Though he COULD make himself a cup of tea--open the drawer, find the right decaf tea, take the bag from the box, close the drawer, get a cup from the cupboard, walk back to the tea station, put the bag in the cup, dispense the hot water from the hot pot, get a straw from the drawer, get an ice cube from the frig (he hates it to be too hot), carry the cup into the family room---, the effort involved is what it might take me to actually whip up an omelette or make a complicated sandwich.

It's just so much easier for me, that I try (not always successfully) to spare him the expenditure of effort needed for tasks that I can do without thinking.

But YIKES, PD just goes on and on and he never gets a break

Thanks for Dr. Graboys' essay. It's very helpful!

VV

By makrivah On 2015.01.27 23:55
Thank you for sharing the article.

By Lynnie2 On 2015.01.28 14:35
I feel I do too much for my husband and my daughter mentioned it years ago. I have tried to learn to back off a bit.
I know it's hard to see them struggle to do things that come naturally to us.
My husband used to get the whole lunch ready, but now he is so slow and doesn't remember to put things on the table that have to be there. He can get the soup ready most of the time, but making a salad would take for ever. Lately he sleeps before lunch so I end up getting it most of the time, however he attempts to get some things for me.
I got the lunch ready today (salad) and he set the table pretty good, and also cleared the dishes away and put them in the dishwasher afterwards. I usually have to check that the frig stuff is back in the frig, but today he left out the Catchup and Salad dressing.
I know he wants to help but as you know things aren't the same.
He helps wipe the dishes at night too, so that's a big help. We always have dishes that won't go in the dishwasher you know.
I feel I need to have more patience with him and it's getting harder and I have to watch myself. I think it's because we seem to get tired doing more things than we ever have done. I feel as if our rolls have switched and I am the stronger one now.
I just want him to do as much as he can even though it isn't always up to my standards,
Watching them struggle even to get their wallets out of their pockets and then get the money out of the wallet to pay for the restaurant bill takes so long, but I have to learn to be patient and I am hoping that clerks have the patience too, but they probably don't realize why they are taking so long.

By SparkysGal On 2015.01.29 08:27
Lynnie - I've learned to "try" to help by timing things for my PWP. For instance I ask him about 15 minutes before we get to the gate if he has the money for the parking so that he has time to get his billfold out, dig around, etc. and have the money ready by the time we pull in. He too leaves things out of the refrigerator and I gently ask him if he's done with whatever the item is, then put it away. I still work and he is still able to be home alone, so I always keep several tasks for him to complete. Things he can do at his pace and that I don't have to watch and get frustrated. He has a sense of purpose and accomplishment as he checks off the items. (Don't put anything urgent on the list is the key). Our roles have totally reversed and I must do more, I keep my temper balanced by simply asking myself, "How would I want him to handle this if the situation was reversed?"

Sometimes he complains about something on my list, so I just say scratch it off and I'll replace it with something you think needs done. (This way, he can decline doing something that is beyond his ability and retain his dignity.) He also gets great joy complaining about "Carla's List" to his friends... His way of bragging about how much he still has to do in his retirement.

We are currently in discussion on how to make modifications to our home to make it more livable as we grow older. (We both know we are talking about his decline with PD but it's easier to discuss if we approach it as a team.)

I know I've strayed from the original post, it was a very good article.

Hang in there Caregivers!!

By mylove On 2015.01.29 09:40
Very well put, and we are doing something similar. I find that now that he's been forced into retirement, he's frustrated and needs things to occupy the time productively. What's he's found is that he's now got an unlimited amount of time to do the research, letter writing, form filling types of stuff no one has time for. He's very very sharp....it's his body failing him, not his mind. He's worked on his Social Security, his retirement application, major purchase research, warranty stuff for our house.... All things I have no time to do with a full time job. It's been really amazing. He has the time, the patience, and the tenacity to get through where others might give up. You'd be astounded at how it's paid off.

Being realistic, I know this part won't last forever but we are embracing it for now. He's still Ben-with-Parkinsons and not Parkinsons-with-Ben. It's a useful distinction to remember. :)

By lurkingforacure On 2015.01.29 13:27
I sure wish I had some of the help talked about here. It's so hard to think of the help my husband could give me and our kids but won't, while he drives to lunch with friends and treats our home like a hotel. Very hard on our children, kids are not blind.

By Marilyn-NJ On 2015.02.03 13:28
Thank you so very much for posting this link. Beautifully written, insightful and meaningful for me!

By carman96 On 2015.02.06 07:15
It's a good article, but oh so sad. There is no good ending to this disease.
My husband needs a lot of help to do things. He gets frustrated and gets mad at me. Yesterday he tried to move a small speaker, but fell and knocked over one of my plants. A little while later, he was trying to move a chair to sit in, he fell, the chair fell and cut his finger. The chair also broke. It was brand new three days ago.
All of this happened because he said "leave me alone!" Guess who has to pick him up and clean up the mess? He is getting a lot of bumps and bruises and my back hurts from helping him up from the floor. So much easier for me to help him in the first place. I'm so sorry that he has this terrible disease. What he doesn't understand is I am trying to keep him safe and out of the hospital or nursing home.


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