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Topic another view of lost and lonely Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2010.11.13 00:47
The view from inside; I'm not saying anything about the grieving over loss from the Caregivers/Partners view, it's natural to grieve that loss. And venting helps get it out (how many times have you put up with my typing it down to get it out and go on? Lot's thanks for putting up with it. This is another one). I'm just trying to give a different perspective on things here. A different point of view one our caregivers/partners don't get to see much of. A glimpse for both sides and why we need to make the best of what we have. A meet me in the middle or being a pain back to Parkinson's! P.D. you aren't going to rip Us apart! You are able to beat Us in the end but love and understanding will out and we'll meet you on our terms.

Here We are, the Patients, yes your world is getting smaller, so is ours much smaller. We See every day the looks on your faces. The concern, the worry, remember you can express feelings and cares, happiness, fright, We sometimes cannot. As the Disease masks our faces robbing us of this form of communication, We can read Your expressions, the fear that We're not there, or hear in your voice a terse response or mumble about We don't care or we're selfish. We do care, if We don't come up with an answer to a question quickly or fumble at doing something We can feel your fear it's dementia! We know it might come and that scares you.........Well it scares the hell out of US too! You worry you'll lose Us, You worry We'll forget You, We worry we'll lose everything and everybody we've ever cared for, our whole lives will be gone! You will at least be left with memories of the past and able to make memories in the future, We'll awaken each day to a blank slate only to seemingly each time we turn around have someone erase it on Us.

Are We stubborn? That depends on the view point, to You we may seem so. We keep trying to do things and muddle them up! We are going to, while we still can fill out the checks for the bills. Now you know it takes Us longer to write them out so you tidy up and do some chores while we're (you think writing checks) but in reality we're having trouble writing, med's aren't working right yet .... then the med's kick in and we start on the bills. You're done with the chores and we have plans to go to the store. You come in look and We've just started!! WE KNEW YOU WANTED TO GO SHOPPING! So we waited until you were ready to leave to start! It's in the view point which constantly changes for Us. So now we're stubborn and selfish! We've been doing our best to help and it goes wrong. We'd like to say would you rather I scribbled on the checks so you had to rewrite them? But We keep our mouth shut because if we scribbled then we'd be losing it and unable to even write a check, nutter's the big "D" setting in. Can't even tell we've scribbled all over the checks. Different view points.

So our world's shrink, You exasperated may call a friend or turn to the computer, We fumble with both, our fingers betray Us We hit numbers too many times or keys because of tremors, or it takes so long to type and retype, everything is a chore to do. But We don't want to be a burden so we try to help and take too long or get goofed up or have to wait for med's to do their job and then we start things but you have to finish, we intend to finish when we are able but..........so our worlds shrink and communication breaks down more. We can't find the right words to express "what we thought we were doing" quick enough so we keep our mouths shut and are stubborn or selfish and uncaring. Different view points, different perceptions. Yes We know you're burning out caring for Us and do need time to recharge, we understand that. We want you to get out and just get away for a bit (you're more fun when you come back) You need to remember while We really do care and want to help you. Want you at your best and not burdened down beaten by life. We sit and watch you go out while We're here trapped inside held hostage by this disease unable to step out even for a moment..........and so our world shrinks.........

By shakydog On 2010.11.13 01:28
Amen, brother. It's a small world after all

By arlenecram On 2010.11.13 07:29
Thanks for that reply---I think I needed to hear that---sometimes I lose sight of the fact that he is trying to help me. Regardless of what the disease has done he is still the man I married--and I love him more today than I did then!!!

By Lacy On 2010.11.13 09:07
Lacy here...I posted the "lost and lonely" comments and I must say, this is exactly what I needed to read!! God bless you for sharing. Now I feel as though it's ME who's being selfish. He is the one dealing with this dreaded disease and he's the one who is truly trapped.

I can get up and walk into another room at a moment's notice, for him to do that it takes planning and TIME.

I shall always keep your post in my mind as I care for him and I'll be more aware of my comments and expressions when I'm with him.

Thank you again for putting so much of this into perspective for me. It will truly make me a better caregiver!

By arlenecram On 2010.11.13 10:22
Lacey---we all have those feelings at times........I too have profited from this post. It is not an easy road for anyone!

By LOHENGR1N On 2010.11.13 10:37
Lacy, Please don't feel "guilty or selfish", what you feel is only natural. It's only Human to feel these feelings. I just try from time to time to put a voice to this Disease from Patients who struggle to voice these things. The most important thing to remember is We're still there even with a blank expression. We truly do appreciate all you do for Us and as limited and sometimes hindering it is we're trying to ease your burden too. Sometimes both sides can get caught up in it and lose sight of that. You're doing ok and venting is needed. It's ok to morn these losses. Keep up the good job you're doing everyone and keep up the good postings! Take care, best of luck and hang in there!

By Emma On 2010.11.13 10:44
I am going to be the devils advocate here, but it distresses me to hear Lacy say that after reading this post she now feels like she is the selfish one. Everyone is selfish sometimes, in life in general and when dealing with Parkinson's as either a patient or caregiver. I think we all have the right to that sometimes, none of us signed up to be saints and if we try to hold ourselves to that standard we are doomed to fail and ultimately to feel even worse than we already do. This forum is the place where we can go to express those feelings and have some sense that they will be validated and, sorry LOHENGRIN, not be told "ya but ...". We truly do understand that the loss and frustration is more for our loved one, but that doesn't make our loss and frustration any less. When we express those feelings we are not ignoring or denying the reality of the situation that our loved one is in, we are just speaking from our hearts about how we are affected and how we feel. Let us have that.

By Emma On 2010.11.13 11:52
LOHENGRIN, A minute ago there was another post, from you to me, which I tried to reply to but couldn't. Now that post is gone. Weird. Anyway, I appreciate your post to Lacy. If you look at the times our respective messages went up it appears that I was typing and didn't read yours until later.

By Michele On 2010.11.13 12:31
LO, Lacy, Emma, We all need to vent without judgement. That's why we are here. I hope no one was offended. Both caregivers and PWPs need to be selfish at times. As much as we love each other, sometimes we have to meet our own needs. I believe that my husband's "stubbornness" is his way of being "selfish" and taking care of his needs. Yes we all are human and expressing our feelings by venting helps. Lacy, you are allowed to feel lonely, frustrated and sad. It is clear that you love your husband and are sacrificing your life to be with him. Not all wives/husbands/partners can or will do what we do. We do it out of love. We know our PWPs experience is so much harder than ours and we want to help.

By karolinakitty On 2010.11.13 21:15
[deleted]

By parkinit On 2010.11.14 23:02
Thanks for hitting the "reset" button for some of us, Al.

By Evie On 2010.11.16 15:10
Lohengr1n, this post of the 'view from inside' is so helpful to me. I have been reading for probably 2 years now, not posting, trying to deal with all the subtle changes in my PD spouse. Your post really puts some perspective into what I see happening and it helps me realize that most of my spouse's actions, or should I say inactions, is because he really can't help it. I can cope better when I have a better understanding of a patient's view. Thanks so much for your views.


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