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Topic musing about dignity and other things Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2012.03.14 00:39
Some more late night musings. As I read the posts daily here My heart goes out to both Patient and Caregiver/Partner. I read the struggles of my fellow patients and their caregivers. We tread a thin line with med's adjustments and daily living. I understand the love that accompanies willingness to help Us patients. And I understand that love turning into resentment as this disease goes on. For the endless (seemingly and unfortunately) line of new comers to our site I post at times some controversial subjects. Not because I'm trying to fuel a fire or cause a problem but because some things need to be touched on. In doing so at times people feel I'm singling them out or get upset. I'm not singling out anyone or trying to upset them either. I'm simply talking about things that might be hard to discuss between the team of caregiver and PDer.

We are conditioned in our society that caregivers tend to their charges and the charges tend to the business of getting better or healing. There are some diseases that don't get better or heal and Parkinson's Disease is one of them. In our conditioning to care we start doing things that we can do easier and better or faster thinking we're doing the right thing. Well, you are making life easier for the patient BUT and it's a big but. Things get progressively worse. With some of us faster, others slower progression. We have medication but this also isn't like advertised on TV. It doesn't make it all go away at best it lets us function at a sub par level and at worst it doesn't help us at all. And side-effects? Some of the most horrorable you can imagine! Some times it gives me insight into minds like Edgar Allen Poe's! Through these long years of battling with this disease I would consul my fellow PDer's to stay as active as they are able....I mean really able! Having a bad day my fellow patients? these "bad" days will be looked back upon as good day all to soon so don't stop. Keep plugging along! I know it's easier to have help but still do everything you can even if it takes a bit longer (I say everything you can with the caution as long as you are NOT endangering others while doing it like driving!) Caregivers don't rush to do everything for your charge! You'll end up doing everything for the rest of their life and resent them for it. Stages are brought up many, many times. The Hoehn and Yahr scale is used. I've always said they aren't set in stone and I could be in a late stage five of being hit by a bus for all I know so it really doesn't matter where you fall on the scale. This scale was devised way before most of the anti-Parkinson's medication available today was ever made. Patients don't look at the scale and say oh I'm showing signs of stage three but some of stage four that's it I'm a goner...keep going thinking the worse will make it come that much faster. And no I don't view this as denial I view it as self preservation.

Lastly for now as I'm getting tired typing it is okay to let us out of your sight for a moment. I know your fears, I know you're wanting the best for us and to keep us safe. But whistles and bells alerting every movement, well they can be viewed by us as ....... We were bread winners, heroes to the family! We played catch went to games watched our offspring proudly in sports, plays, tended cuts, mended hurts, dried tears. We were Mommy and Daddy chasing monsters from under beds and closets. Brought drinks of water on scary nights when bad dreams came. We read bedtime stories. Now we're battling a monster still, one that gives bad dreams, tricks us into seeing things that aren't there. Steals our voices at time so we can't talk let alone read a story at bedtime. We tremble and twist, drop things and fall, even get stuck in mid-step or thought. We're still Mom's and Dad's, Grandpas and Grandmas. Don't doubt we're still here filled to bursting with love and appreciation, yes bursting because we have trouble getting it out. We're not asking for anyone to feel sorry for us, we don't want sympathy ...all we want is to let you know we love, we feel and wish to retain our dignity. We're not feisty, argumentative or suborn. We're clinging to each bit of dignity and self reliance we have until it is finally wrenched for our clenched fingers. Smile (with) for us, laugh (with) from us or just sit silently with us for a few and remember, just be with us that's all we mostly ask, that's all we really need and that's some of the best care and medicine you can give us. Take a break form all the worries, fears and work, look into our eyes see the love, ignore the pain and fear touch us with your thoughts. Take care, best of luck and hang in there.

By mylove On 2012.03.14 01:06
Al- you're absolutely right about the way of thinking being not denial but self preservation. If you don't keep going, you won't keep going. That's what Shakydog always says. I think that's why it took him so long to admit that it's maybe time to cut back a couple hours at work.

I know it's so hard for him to think that he may be the reason why I'm having such a tough time. I'm trying to find a counselor as we speak that understands chronic illness. I was seeing a guy that I really like awhile back, but he could never understand what chronic illness was like. He was the kind of guy who was never sick a day in his life. When I told him I needed to know how much to share of my burdens with my husband, he told me that's what my husband was there for and that I shouldn't ever spare him anything.

He never could understand what it was like to have to tell your spouse that the dog's torn up something valuable or the kid has a flat tire when you're looking right at them already exhausted from work and you can see them visibly deflating as you speak the words in front of their face. That's the reality the caregiver spouses face every day.

And the other reality is from the other side: that person you're inadvertently battering on IS still a spouse, a husband, a wife, a father, a mother.... and wants nothing more than to participate as much as you want them to, even when it exhausts them to go on.

Sometimes it feels like the dance of the devil.

I'm not sure what point I was trying to make, I'm just musing along with you. Keep the faith.

By moonswife On 2012.03.14 21:46
To both of you......thank you for taking a perfectly horrible day and making it bearable again.
A caregiver having an unusually bad case of asthma, came home to a husband with 10 or more years of PD that had made german dinner.
How awful for him to have given up a job, and watch me go to one. Yet he tried to make my night better by being the cook.

Bless you for putting life into perspective.


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