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Topic Al, Olpilot, if you would... Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2013.09.05 12:29
Carl is still a lot like both of you...his physical limitations outweigh his far...

My question...reading a great many posts, I see a common thread and one for which I would like to better prepare. Please let me pick your brains, or if anyone else can answer, thank you...

When a special event comes up or something important to a caregiver arises, what goes through the mind of the PWP?? I mean, I can't simply think that the PWP CHOOSES to ignore that which is special...Is it that you cannot remember the event? Are you protecting yourself because you know you cannot go out to buy a gift or make a reservation to celebrate? Or, does it just simply not matter with the life and death decisions you make daily? Are YOU offended if the caregiver makes plans with others? Does it bother you if the caregiver keeps his/her social life with or without you?

Like I have said before, we are still very much involved in each others daily lives. He has always been supportive and very kind...I am wondering if we will face these issues as the meds increase...I plan to keep walking daily and going to WWs and talking with friends, monthly PD meetings, etc...But, I really want to know...maybe others do, too? Jane ;)

By LOHENGR1N On 2013.09.06 00:07
Jane What you ask is not possible for me to answer. What goes on in the mind of another person or how exactly they feel about a specific event. Everything that has happened in our life weighs in on how a person reacts or feels, added to that the medications which are or can be mood altering drugs. On top of that is added the relationship dynamic's pre and post Parkinson's diagnosis. We are all just human so we all carry what we were taught or grew up with to some extent. Baring addictive actions from medications, if we were jerks before PD we'll still be jerks with PD. then again dementia and delusions will affect thinking also. I can give insights in specific events at times of how or why a reaction might be given.

I can tell you if I were in Carl's position right now with the up coming trip I'd be freaking. I experience anxiety and panic with events looming. (If I did before P.D. it wasn't noticeable so I guess it is a gift of PD or the medication, most likely the mediction) So I myself tend to just downplay (ignore) them until the last minute if at all possible. Even then at time's last minute I cancel...I'm not going! Anxiety wins. In fact I most likely wouldn't have Tess if not for My Personal Care Assistant. When the notice to go to interview for a balance dog came, I turned to her and asked will you handle this please? I'm going to be a wreck if I try to plan this. Yup She said then got transportation lined up a driver to split the driving with her and told me all set. The day of the trip I was anxious but made it there and back 3&1/2 hours ride each way, hour for interview. It was a long day but I made it. Needless to say I'm not a planner anymore not only because things are subject to change with med's working or not or feeling sub-par but to plan is to defeat myself. If something's slated I do not fuss over it or check and double check. The anxiety and panic it would cause to think about it LOOMING (yes capitol letters because that is what it would seem to be to me is looming) ahead would cause me to start acting like a chipmunk trying to cross the road. If you've never seen a chipmunk trying to cross a road it is like this; they dart out stop turn around run back only to turn back around and run into the road,stop, turn around and dart back...several times only to run back out when a car is coming and either run back, run forward or get smooshed! So if anyone would look to me to plan an event or to talk about an up coming event with them, they would find me reluctant and not much help. I know when events are, if something is needed to be brought or bought I make sure I have it BUT otherwise to anyone who doesn't know Me or how I react to those things could see it as uncaring or ignoring it......when the opposite is true, I do know, I haven't forgotten and I do care! I choose to put it on the back burner....then when the time comes handle it the best I can, get to it, get through it and get home. For me, to talk about it, plan it, plan about what I'm going to do while it is evolving would be to allow it to take on a proportion that would overwhelm me and in all probability make it impossible for me to attend. That said, it isn't in my case a problem of being able to buy a gift or celebrate or making a reservation or even remembering, for me it is a case of knowing that if I don't downplay the event it can take on a life of it's own filled with scenarios making it seem to end up like a life or death decision. I know it's coming, I know when, I make the choice to not remind myself of it till it's time to go and then get through it best I can.

As I said I can't answer what is inside other peoples heads or what they are thinking all I can offer is a peek inside my muddled mind. If this helps anyone a little understanding some reactions to events their loved ones may have, well glad I could help. Don't know if this is anything like you're looking for but here it is anyway ;)

Doc Holliday: What did you ever want?
Wyatt Earp: Just to live a normal life.
Doc Holliday: There's no normal life, Wyatt, it's just life. Get on with it.

By olpilot On 2013.09.06 01:13
I had to sit and write this out in a text file that I can go back to and see ifwhat I answer makes any sense.. First some answers, I never ignore the event, I hope I or circumstances can prevent me from going, I don't forget. I am not all that good at picking out gifts for people, I do however like to make gifts, not much better at that for getting it right, but rather than give someone a toaster or something mundane I have in the past given drawings, portraits, or things that I have done, but that is the past. Making reservations is really hard when after just getting of the phone with my wife and being told I need to do something, I forget. It bothers me very much that simple things like that somedays seem beyond me.I am not offended that my wife wants, needs, or has a life outside of dealing with the day to day of me, but am I hurt sometime, God yes. I like any male want my wife to orbit only me, have no need for anyone else, but in reality where we all really live, I know thats not realistic or even possible, I know there will be a day when the choice will be made for her though, and that makes me sad, that when her orbit is only around me it will be for this. And yes sometimes it does bother me that she has a life outside of me, and that my life is inside of me.

My perspective on all this, as long as she does not have to deal with just me that is good for her. Right now I am doing pretty well, I can for the most part take care of myself, and in fact don't want to be hovered over. I think I may be at a place where I still need to be somewhat incharge of me. It is getting harder and harder to do that. I get slower, the pain gets worse, and that trip downstairs to the shop gets steeper. Seems every couple of months the meds increase, because I decrease. I try as best I can to keep life as it was, but it gets harder and as it gets harder I have to rely more and more on her. It puts so much responsibility on her, when already she has a pretty good load. Like all the caregivers I see here, she has her own health issues. For the past few years mine have taken over our lives, and hers have fallen behind. It's not fair, but it is what happened. I hope that even when it gets to the point that I pout, and sulk about her having a life besides me she keeps having one, easy to say now.I don't think anyone locked in a Pd body wants the one they love to lose being who they are, but there is a lot of fear being the one in that body. We have no control over this demon, we can fight and I have no doublt that every pwp fights every minute of every day against it, but it is a losing battle and we all know it. I can' t speak for anyone else but part of the fear also includes what am I going to do if some how, for some reason that rock in my life isn't there. I am not saying this as a mistrust issue, I don't want to come across that way, but as this thing progresses I think we regress back to that childlike state of need. Or like the fear, almost panic I see in my puppies faces when I leave, what if something happens, who will take care of me, what will I do. For so many years I was the one in control, as an airline captain, as a sailor, as a man, and now that is gone, or at least fading fast. For all the times I've heard people day control is an illusion, having been and airline Captain I can truly say that when I did that, the only time I didn't have control,God did, and that was just in the weather. My decisions would trump fedral law, if I was wrong you would read about it on the news, short of that I was always right. Those were the rules. Now not so much, now I am a passenger on a bus headed for a train wreck at an airport. Fortunately we are all on a different road going at a different speed, the destination is the same, but no two of us are will get there the same way.

Pretty long winded answer, but I hope it makes sense. Simple put I wish I was the center of the universe, but I don't want to pull anyone out of orbit, I don't want anyone else to crash and burn.Steve

By jcoff012 On 2013.09.06 13:29
Al and Steve (Hi, Steve), your posts are amazingly candid and beautifully written. So much more indepth than I expected, but so heartwarming. Thank you.

To be honest, I first read these over four hours ago. You both made me cry, but not for the reason you might think. I just reread them and have saved them both as a file for our personal battle with PD. You were both so sweet to let me/us see into your mind and soul. How difficult it must have been, but if you are heard and understood by even one caregiver or other PWP, it is so worth it, right?

I guess my question went out to you out of concern and love for Carl...and both of you. I realize "this is a caregivers forum", but I am touched and amazed that any PWP are able to verbalize how they deal with life. I, for one, know how a chronic disease can in an instant in a doctor's office change life forever. However, I, for one, can NEVER know what you face daily and I would never presume to. I just wish for one day, then another and another, PD would leave you.

Steve, it was touching how your love for your wife comes through your post here. I see the same concerns in Carl's eyes. So, I know they are in his heart.

And, Al, I agree with you...seems like PD sometimes only makes one's traits worsen. But, if PWP can be as kind and caring as you, we all need to sit back and reread your posts.

Seems we are all in this together, battling the same battles, just at different times. Thank you for once again understanding that our way of handling PD is to ask questions before a situation occurs...not that we can always be prepared...but it helps to ask and listen to the advice of men such as you both. Again, thank you,

Hugs and love, Jane

By jcoff012 On 2013.09.06 14:59
She has a life outside of me, and my life is inside of keep rereading that..

It puts caregiving in perspective, doesn't it? Not that as the disease progresses the daily aspects of caregiving are not overwhelming, but you are right, Steve...Caregiving is for only part of our lives, even if at times it seems like it is the only part...PD IS the PWP's only life and not one he/she would place on anyone else.

It is through boards such as these that relationships, friendships, and understanding can be had. We may agrue, disagree, weep, or relish in the daily joys of life, but can you even imagine how caregivers and their PWP survived without being able to ask for and offer help from others? FINALLY, a good use of the Internet!

Again, thank you both...wonderful food for thought...haunting words...

By olpilot On 2013.09.07 00:56
Tthank you for asking, not very often does someone care enough to ask what is going on inside of someone else, anyone else. It helps me to know what goes on in the minds and hearts of those who take care out of love, duty, or just a desire to help, the ones who stay when you could leave, the one who stay out of love.

I am so glad to have found this place, and after a relatively short time to, feel apart of it. Al's insight and his experience, the compassion of Jane and the other care givers give more insight into living with pd than any book or seminar.
Thank you Jane, Al, and everyone else here fir listening, and for the feedback.

Reminded me of this song frlom years ago

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