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Topic Knowing your limitations.. Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2015.08.16 20:21
At what point does a PWP cease to know his limitations? Will the caregiver know first?

I am constantly amazed that after six years, Carl seems able to accept and seems to understand his limitations with PD. Example, today we were supposed to go to the Water Park with the two grandkids, and our son. However, after he realized it was going to be 108 and his tremors kicked in big time on both sides, we found a hotel with an indoor pool!

But, there are times I sit and wonder how long he will be able to rationalize? I am STILL in a quandary about the re shingling of his sister's roof in October...grrrr...

Any insights? hugs, Jane

By umajane On 2015.08.16 21:28
Hi Jane,
In our case I definitely know my husband's limitations. He is ready to take the dog for a walk around the block and I have to go with him now. He has tripped twice and a neighbor brought him home. However he is ready to take off still. He sometimes wants to drive but there is no way so it is up to me to stop him.
I'm glad you are indoors today..It's 105 in Pleasanton and we have been in all day.
Unless he is napping or has a caregiver here I stick around to keep him safe.
Luckily I have 3-4 caregivers when I want to do my activitites and he seems to like them. I have found a very nice group of ladies and no complaints so we are both happy.

By bksquared On 2015.08.16 23:23
Hi Jane,
My PWP husband has severe balance issues and cognitive impairments that were the first symptoms of the disease. His executive decision-making stinks. He cannot think through a situation. Our grandchildren wanted to go tubing in the Delaware river. He wanted to do it. I could not get him to think that he would be in danger. No idea about his limitation. Thankfully my daughter told him no way. Tomorrow we will try a 6 person raft that can not tip over in the river. We know he will be safer with a life jacket and all of us around him. Or at least we hope he will be safe. So if Carl has not yet been mentally impaired at least he might accept your setting his boundaries. No one can predict when anything will change with this dreadful disease.

By makrivah On 2015.08.16 23:48
Good question. Since my husband's episode with heat exhaustion in June, his awareness of his limitations has greatly increased. In fact, he may be over reacting. He won't try to do much of anything. I wonder if he has given up? I've also noticed that when he tries to pitch in (for example, loading or unloading the dishwasher), things go wrong and I end up having to rework. Now I'm not being picky, honest. Stemware on the bottom rack, cups and glasses sitting right side up. That sort of thing. Tonight he had a strange moment. He couldn't figure out why the tv in the living room had on one show, while at the same time the TV in the bedroom had a different program playing. He'd lost the concept of each TV can be tuned to a different channel. I tried to explain. After a bit, he seemed to figure it out. PD is such a strange disease. Sad. Sad. Sad.

By VioletV On 2015.08.17 08:03
This thread is indeed apropos.

Yesterday late afternoon my PWP husband decided to paint a white safety stripe on the back porch steps. I won't go into the whole process--struggling to open a can of old paint on the kitchen counter-and it was old RED paint anyway (how long does it take to get dark red stain off of white ceramic tile?...). Arguing with me that he was able to do it. It was only 3 steps so I demurred. Got him to take a dinner break. After dinner he worked until almost dark and when I stopped him he was drenched to the skin -- as though a hose had been turned on him.

I brought him into our one air conditioned downstairs room, gave him cool water and Gatorade, then I cleaned up the paint cans etc. He seemed to be ok. Then he told me that he was mad at our housekeeper for being bossy while he was trying to open the paint. (But that had been me!)...

Now this morning he is struggling a little cognitively --not entirely sure of my name...could not remember what he usually does in the morning

One upside. He slept through the night with only one waking.

So I promised him this morning that I would indeed be bossy if he was wearing himself out. He seemed ok with that. Such a lovely man brought to this by this rotten rotten disease.

.

By makrivah On 2015.08.17 17:22
Violet, same song, different verse. Seeing our PWPs struggle just tears out our hearts and shreds the soul.

By michele On 2015.08.18 21:26
I can relate to each of these posts. Watching my Dad struggle is so heartbreaking. I don't know which is worse him thinking he can still do a certain task when we know he can't or when he realizes he can't do it any more! This desease is so cruel!

By jcoff012 On 2015.08.20 11:57
Violet, I am a HUGE fan of Magic Erasers! They work on everything! You can buy them everywhere...WalMart And Target have packs of them...they don't scratch, either!

Thank you all for responding...like I said to Al one time, we seem to be "lucky" with Carl's PD journey...he has increasing physical problems, but is still highly functioning, can drive, exercises, etc....

The reason I am asking this question is that we are expecting his "good" health may crash soon, and we want to be somewhat prepared for "signs".

Also, I am expecting a downward surge soon because our little guy started school yesterday, so our daily routine is upended after five and a half years. Carl's neurologist said watching Nigel, playing with him, teaching him, etc. kept Carl going in a good way...now he will need to fill all of the hours...Jane

By LOHENGR1N On 2015.09.06 19:48
Jane, sometimes it isn't knowing our limitations, we can use poor judgment. Tell Carl to be extra careful on the roof! A couple of years ago in the fall I was up on my roof clearing leaves so they didn't freeze and dam up any melting during the winter and cause leaks. I knew it was not a great idea for me to be up there. I knew I had to exercise caution. It was going quite well I was surprised at the ease of the task, then I turned well I tried to pivot around instead of cautiously taking small steps and gravity took over. I went flat on my back, arms spread out at my sides to absorb the landing. It was scary and funny to think of now as I must have looked like a cartoon character because I literally fell out from under my hat. I went flat and a split second later my hat plopped down on me. Needless to say I got off the roof right then and there. And finished the job the next day (I did mention poor judgement didn't I?). Remind Carl to be careful and be slow! Don't rush anything up on the roof. I know it is easy to say but just be careful!

By jcoff012 On 2015.09.07 19:34
Al, you always make me laugh and forget the PD! I am so glad we"met" here!

I think that very first post to me is burned into my memory and my life and has helped me through this journey....You told me to leave Carl alone as long as possible and to not hover and take on too much to avoid being burned out. All these years I have tried. It gets hard watching him at times struggle...but, then I realize what you are advising is for the best...HIS best is not always mine, but it IS his life! As a caregiver, my *job* is simple so far. we are extremely lucky. I am his companion, sounding board, and his love. We have had to make minor adjustments to daily living, but we still are relatively the same.

We leave soon for two weeks in Oahu and Maui and each time, I get melancholy thinking it will be our last. But, we decided after my Mom died earlier this year, that if we travel, we will fly first class and stay in hotels we love, no skrimping...Told our kids we are using up their inheritance, and they laugh and say to "go for it." As for the airplane rides...we have learned that the exorbitant cost equals peace of mind, extra care, better food, and a closeness to a separate bathroom that isn't available booking coach.

I will remind him to be careful, but in his mind, he has been preparing for the trip to North Carolina all summer. He walks 5k each morning, does LSVT, exercises with bands, and we lie out in the hot California sun to tan up! Every day...never fails...

I worry about him, but I keep letting him go at his own pace. I will do my best as long as I can...and then try harder! Love you and all my good friends here...Jane


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