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By carman96 On 2014.03.20 06:52
A lot is said about staying optimistic. I think of myself as being more pragmatic.
How can one possibly stay positive when you see the person you love deteriorate every day? When there is no hope of getting better? When you are so physically and mentally exhausted from daily caregiving? When you go from doctor to doctor, to p.t. and speech therapy and there is only so much they can do?
Sorry, but there is absolutely nothing to look forward to with this disease, so I can't and won't pretend to be optimistic about it.

By jaxrock On 2014.03.20 08:01
I completely reason to be optimistic about our loved one with PD...but, can't we find other things to be optimistic about?
lunch with a friend, phone call with a son/daughter/grandchild, a new book to read, .......just other "stuff".
It won't take away the pain we have every day of watching our loved one deteriorate....
but, I feel we must keep searching for other positives in our lives as caregivers..
just my thoughts........
I don't mean to sound "Pollyanna-ish", but it's the only way I can deal with the sadness of watching my husband's health deteriorate.

By carman96 On 2014.03.20 09:32
Jaxrock, I agree I can do positive things for myself and think positively for other people. It's just this PD that's so relentless.

By jaxrock On 2014.03.20 10:08
Oh, I's terrible!

I do notice.....and I'm sure you do too...that my attitude and optimism about other "stuff" in our lives seem to help my husband stay a bit positive himself.........

Even if he can't follow through with some of our plans, he seems happy that I can.

We are both aware that there's no rainbow at the end of this journey.....but I guess we can still enjoy bits and pieces of the occasional sunny days....

It's so hard, tho!!

By Freespirit On 2014.03.20 12:54
I would like to think I am positive while at the same time pragmatic.

It dawned on me several months ago that all of this fighting against PD was eventually going to come to naught and that my husband will one day succumb to PD regardless of what I do, or don't do.

This was quite a revelation to someone who had been in the "we're gonna fight this disease" mode for the past 12 years. It made me sad for a bit.

Now I feel I have accepted that one day my husband will die due to complications of PD. With that being said, my new mode of operation is to "work with the disease" as best as I can to make my husband's life as easy, and less complicated as we possibly can.

I am very optimistic about the things we are able to do for him! There was a time when people with PD had a much shorter life-span, and less options for care. The way I see it, we are all going to pass away from something. . .

My goal is to make his remaining days as wonderful as I possibly can!! It's tough, yes, but it is also an opportunity that I have as his wife, as a human being, to make someone else's last days special, and meaningful, and as easy as possible.

Just my thoughts. . .

By jaxrock On 2014.03.20 13:19
Ah, yes, acceptance...

I, too, came to that place a short time ago.....

The past twelve years have been awfully hard........

But I do seem to "accept" the unavoidable outcome a bit better now. Maybe that's why I can still see bits of sun in a gloomy, stressful day.

I really enjoyed reading these posts...

By JulieB On 2014.03.20 13:28
I like the way you said you are more pragmatic than optimistic -- I relate to that. There isn't a lot to be optimistic about with Parkinson's. It's a cruel disease. So while I'm not very optimistic and I want to be as realistic as possible, I do think being grateful helps.

I keep a gratitude journal and write down the things I believe God brings into our lives to bring us hope and joy even in the midst of this suffering/trial. I might write down even the most trivial-seeming things, like
#237 -- Michael's smile at breakfast today,
#724 -- the chickadees fluttering to our window feeder,
#1087 -- the generous meal Dawn brought yesterday,
#2881 -- that not even PD can separate us from the love of God,
#3109 -- the difference Abena briefs have made for us, and so on.

I have found this vigilance toward counting even the tiniest gifts, has meant the difference between dark, dark days, and days with light and hope. So while I'm not a very optimistic person, I'm trying to cultivate gratitude. It takes practice, I'm finding. :)

Thinking of you all today... xoxo

By jcoff012 On 2014.03.20 18:16
Been waiting to respond because I wanted to carefully word a response. All my life I have been called "The Eternal Optimist". I still am. I don't see it as a fault...but was the concern behind my recent post about denial...

Carl and I have had many long talks. When I came here a few years ago, I asked all the same questions as many others. Even people here called me someone who was too optimistic, etc...While that may be true to some extent, I offered up a conversation to Carl about all of this...HOW can YOU be optimistic each day? How do you cope? What do you want from me? Does it bother YOU if I cry openly or should I be optimistic?

I asked these of our wonderful forum PWP, especially Al, who has become a beacon for Carl and I both. I value his input, knowledge and kindness in answering my questions, even if he has answered similar ones for years. Why not go to the source, right? ;)

From these two wise men, Carl and Al, I have learned that it does no one, not even me, good to NOT be optimistic, as long as it is tempered in reality. I see this as a positive doom and gloom here, just reality. Will I be able to change the course of this disease or take away any of the pain, the hurt, or the desires for the "old days" But, I can start each day with a smile, look for new experiences, new books, new hugs and kisses, and research and share the information I have learned here...That is where Al and Steve have helped me...often without knowing...How can we caregivers not be optimistic when they can we not face the reality when PD IS their reality?

One thing my 95 year old mother said the other day..."Jane, look in the mirror each morning. REALLY look. See yourself, not as you THiNK you look, but as you are...the person you have become....Are YOU the same as you were fifty years ago? Do you have your girlish charms? Be honest. You have changed...and often for the better...but, you walk slower, have lapses of memory, your hair is greyer...What I want to share is this...Your Dad's doctor told me to do the same thing..."Do not judge him. ALLOW him to get older, to change. It is life. A chronic disease is no one's friend. Make yourself happy so you can make him happy. Share your loves, your wishes your pains...but pour more compassion and kindness into your days and your lives together will be richer." I was stunned...I guess those words will haunt me...she sensed I was at the point of facing our new reality, as many of you are doing. I needed to hear that wisdom...

So, am I optimistic?...Yes, I want us to be as happy as possible as long as possible. I will work hard to make it so. Do we accept the inevitable...yes of course. But, we do not dwell on it...

One of the simplest, yet wisest remarks from Carl was, "Jane, PD is what it is. Everyone dies. No one wants to. Some of us know the reality that it IS coming sooner than we want. But, I want it to be as happy as it can be and I need YOU to help me make it that way. I will do all I can for as long as I can. When the time comes that we must part, I want you to know that in my heart I will know you did your best and you will know we loved each other in the best times and through the worst. I want you to be happy, matter what you want or need, I want you to have it. I wish I could give you all you want and need, but I know I won't be able to as PD worsens. Try to remember, and remind me often, that our love will survive...even this."

Don't you love this man? I certainly do. So, call me the forum optimist...I wear the title proudly...No offense meant to others who are facing this journey with quiet each his own. I just wish I could DO something for each person along the way...too bad we all don't live closer and could really hug and share the ups and downs...wouldn't that be grand? Hugs and love to all, Jane and peace to all PWP.

By carman96 On 2014.03.20 23:54
I very much love my husband, and I try to do my best to make each day as good as possible for him.
Of course I have compassion and kindness for him. But I can't have any conversations with him about how he is feeling about the future. Sometimes he doesn't even realize we are home. He thinks we are moving every day, and I have to try to convince him we aren't. he doesn't understand that he will never get any better. It is so sad for him and exhausting for me. He gets mad that I hide his truck keys because he still thinks he can drive. I have to help him get dressed which is difficult because he is always wanting to take his pants and shoes off, and two minutes later he wants them on, and doesn't remember that I just helped him take them off. This happens several times in a row. He gets up 4 or 5 times a night and always wants to change his depends whether they are clean or not. I take him to appointments sometimes several times a week. He can't walk more than a few feet at a time and often falls, despite my best efforts to keep him safe. He is so limited in what he can do. He can't play cards, or read, or carry on a conversation. And on and on.
I take care of him as well as I can, and try to smile when I feel like crying.
Sorry if I can't stay positive always, but that's the way it goes.

By jcoff012 On 2014.03.21 00:06
Hey, there...I didn't mean you, Carman...I meant that as a rhetorical question..."Don't you just love this man?" was referring to my husband, not yours, or anyone else's...don't take offense...

As I have always said, it is NOT my place or desire to chastise one person has all the answers...I wrote that I didn't respond quickly because I wanted to carefully craft an answer...thought I had...

As I always say, too...we are only into Carl's journey for six years, but we went through this for over 22 years with his PD is not new to us...I know you are worn out, feel alone...and tired...All I wanted to say was what it was like on our journey so far...and, as always, ask me again in 10 or 15 years, perhaps life will be different and more difficult for us, too...

Many people use their faith to get through all of this. We use the fact that we have been together since high school and have had a lot of sadness and loss, so we use that willpower and, yes, faith, to get us through...Please don't be asked for opinions...that was mine...I meant nothing personal... LOLOL...Hugs, rest, Jane.

By carman96 On 2014.03.21 00:52
Okay, Jane, I guess I took it wrong.
It's the dementia that gets to me the most. I sure miss having a normal conversation with the person I spend the most time with.
I hope for you and Carl that he doesn't get dementia or if he does, he stays in the mild range.

By jcoff012 On 2014.03.21 11:26
Carman...a suggestion...take it or leave it...Are you able to attend a Monthly Caregivers Group? You might find a few good friends there. Or, how about your Weight Watchers group? Have you considered becoming a leader for WWs? There are also a lot of online boards on their site...your journey with WWs and PD would be invaluable...It wouldn't be talking per se, but you might make a new friend or two with whom to connect.

As for dementia, Carl's Mom had was his Dad's biggest problem...her voice was so quiet and he had hearing aids, so add the dementia and his cancer...Phew! I guess that watching him manage her care with all of the other issues in his life, including rads and chemo, I have a so much respect for him and he is our role model...How can *I* complain after watching him do the caregiving for over 22 years? So, I, too, hope Carl doesn't get it...But, we are ready...Easy to say, but we take PD one day at a time...what else can one do?

As for misunderstanding posts...that is a huge Internet problem...what we perceive one way is not always the way it is taken by the reader. i am seeing that the frustration, the fatigue and the loneliness often cause many posters to misread posts...I also don't think anyone here would intentionally hurt anyone else...That said, I hope you and your husband have a great weekend...As always with PD, we can only live one day at a time. Hugs to you, Jane (I am thick harm done...ever!)

By Freespirit On 2014.03.21 12:54
"As for misunderstanding posts...that is a huge Internet problem...what we perceive one way is not always the way it is taken by the reader. i am seeing that the frustration, the fatigue and the loneliness often cause many posters to misread posts...I also don't think anyone here would intentionally hurt anyone else..."

A big AMEN to that, Jane!!!


By LOHENGR1N On 2014.03.21 17:06
whoo hoo or oh shoot he's up and running on a computer! You're right there's nothing optimistic about this disease! I'm not going to try to paint sunny skies or smile faces on it, I can give a glimpse of my outlook on living with it. I'm a nature buff, I have over these years learned to look for small windows of encouragement from nature. With years of self training I've found a plethora of examples all over if I look for them. Just looking out a window at the lawn, it's grass and it grows. Every week or so it gets mowed over, cut down but it still grows. It's Parkinson's Disease, I have it, it is getting worse and will continue to worsen but I'm here and continue on. Right now it's snowing outside, the birds are huddled wondering like the rest of us where the heck is spring? They're here, going about their business of surviving so I do also. Each day there are events going on all around Us we can learn from. I guess if there were any good in Parkinson's is it slowed me down so I could catch them. This disease sucks big-time, being my own caregiver I'm forced to slow it down, to step out of the world most of the time and live in the Parkinson's world with myself, my patient. It must be maddening to try to straddle both worlds....When I do have to function in both worlds handling shopping and Doctors appointments I tire quickly. I don't know how you carry on for so long living in the middle. No there is nothing optimistic about this disease, I rise daily and try to find bits and pieces of inspiration. Rays of sunlight throughout the day to hang on to. In tough parts of the day I look for examples to draw strength from to get through the hard part.

If I could give any consul to you strong and wise caregivers who labor everyday to aide us I think I'd say be easier on yourself. Just as time goes on and the expectations upon Us patients is lowered so should you lower what you demand of yourselves. When we need more care then something else has to be left undone. You cannot do everything and keep things like they were before. Things aren't like they were before Parkinson's and no matter how hard one tries to keep up everything we can't it's just an illusion we try to keep. I hope I haven't offended anyone with this post as it wasn't my intention. Be easy on yourself, understand it's impossible to keep things as pre-disease.

Sit down, have a cup of tea, put your feet up and say screw the dishes it's paper plates tonight! Take care, best of luck and hang in there but above all be easy on yourself

By carman96 On 2014.03.21 20:59
Welcome back, Al!

By jcoff012 On 2014.03.21 21:03
Just was typing the same! Welcome back, Al! We missed you...I agree wholeheartedly...let the dishes GO! lol Paper plates are our friends! lol Hugs!

By carman96 On 2014.03.21 21:15
Jane, , no we haven't been to a PD support group yet. It's at ten in the morning on the first Tuesday of the month. It's 30 minutes away. Good luck trying to get my husband out of the house by 9:30. Besides, there is always something else going on that day.
I really would like to work for WW but that would mean even more time away from home.
I do have my over 50 exercise class, my bunco group, my Master Gardener friends, and my WW group. These groups overlap sometimes, as we live in a small town. Many of the women are older than me and some are widowed. I get lots of good advice from these women. I don't know what I would do without them.
Everyone is very kind, I don't want to be someone who only talks about my husband's illness.

By jcoff012 On 2014.03.21 22:58
Carman, we live 30 minutes North of Santa Rosa, in the wine of our neighbors has his own is cool...Our meeting is on the other side of SR, so it takes us 45 minutes each way, but its only once a we go...

If you ever need someone... Jane_coffey NO space...We are retired and only watch Nigel T, W and Th now...

Hugs, Jane

(Carl and I had a long talk today on the way back from our daughter's...he says he is ready for whatever is coming. I told him I was ready, but wonder if the sadness and loneliness I am seeing in the forum is in our future...Here is what he said, "Jane, we have been together since we were 17 and now we are 66. We have very few things on our bucket lists that we haven't done. We have insurance, rx coverage, two beautiful homes, money in the bank, great kids and grandkids...All we don't have is a long future like we planned. But, you ARE a strong woman. You WILL make it without me. Can't we just live the time we have without worrying what is to come? We cannot change PD. NO ONE knows what will happen or when...we just know it WiLL happen..." I just sat and listened...made no comment. I realized at that moment that he just gave me a gift that so many caregivers never hear...and for that, I am grateful and love him even more.) Hugs, Jane

By carman96 On 2014.03.22 09:10
That's beautiful, Jane! What a sweet and wise man Carl is.

By dans316 On 2014.03.22 11:03
There was an article in our local newspaper today about local parishes of the Catholic Diocese or Harrisburg Pa sponsoring a day devoted to caregivers. It's for caregivers of family members or friends with a disability or serious illness.The day features a continental breakfast, hand blessings, an elegant catered lunch and an afternoon of spa treatments-hair cuts, manicures, massages, facials and more-all for free.

Just wondered if anyone on this forum has ever heard of this in their area or attended one??

sorry to make this so long, but in the article they mentioned a poem, Blessing of the Hands," I think the author is Joni Brandt but not sure. It was read continually during a ceremony they had. Hope you enjoy it.

Bless these hands with their gentle touch,
bless these hands as they caress the ones they love so much.

Bless these hands that clasp in prayer,
bless these hands that seek Godís guidance each hour.

Bless these hands that push the wheelchairs,
Bless these hands that assist with the stairs.

Bless these hands that drive the vans,
Bless these hands that schedule doctor and therapy plans.

Bless these hands that shampoo, bathe, and touch,
Bless these hands that rub the lotion and such.

Bless these hands that comb the hair and dress,
Bless these hands as they seek to bless.

Bless these hands that brush the teeth and stroke the face,
Bless these hands as they see Your grace.

Bless these hands as they work the feeding tubes,
Bless these hands, they are Yours to use.

Bless these hands as they hold the spoon up,
Bless these hands as they lift the cup.

Bless these hands as they wipe slobber and drool,
Bless these hands, they are a useful tool.

Bless these hands as they deliver the meds,
Bless these hands as they make the beds.

Bless these hands that massage muscles and painful nerves,
Bless these hands that are used to serve.

Bless these hands that soothe through seizures and pain,
Bless these hands that long to take away the pain.

Bless these hands that pray for healing, relief, and peace,
Bless these hands that pray with great belief.

Bless these hands that clean mess after mess,
Bless these hands with patience as they are put to the test.

Bless these hands that wipe away tears,
Bless these hands that long to take away fears.

Bless these hands as they wipe yet more tears,
Bless these hands as they long to take away rejection from peers.

Bless these hands as they wipe tears of their own,
Bless these hands that do this in secret, they cry alone.

Bless these hands that are often wrung in worry and fear,
Bless these hands with comfort from loved ones so dear.

Bless these hands that grow weary and tired,
Bless these hands, may they always be gentle, kind, and inspired.

Bless these hands Lord, which are dedicated to You,
Bless these hands that are Yours to work through.

Bless these hands Lord, with power from above,
Bless these hands to deliver Your intimate love.

By parkinit On 2014.03.22 23:42
Beautiful, Dan. Thanks for sharing.

I can so relate to frustrations here. I can also relate to being optimistic at times. I always greet my husband with a smile and a kiss each morning and he says,"Hello Sunshine!" More and more, this is difficult for him to say.

Just that remark from him each morning makes me want to be his Sunshine, yet some of you may never or rarely get positive feedback or a thank you. This is not intentional, but there is loss of memory, loss of voice or other issues. That is when it is difficult to be positive. When my PWP can no longer vocalize his wishes or call me his Sunshine, then it may be very difficult to be positive.

By jaxrock On 2014.03.23 05:54
Parkinit, we are so lucky!
Yes, my husband also calls me his sunshine....and says Thank You every time I give him his meds....every 2 1/2 hours!!
I don't know if I could do that, if I were in his shoes....
He also compliments me when we get ready to go out to lunch, or dinner...etc. He still thinks I look wonderful, even though I can see fatigue and stress in the mirror sometimes....
Maybe it's because we also met in high school and have been together ever since....
I would (will) certainly miss his gentlemanly, considerate ways....
A bright, sweet man who should never have to go through what he's going through...but, then, no one should!
Never thought I'd be a caregiver, but, if that's how it is, that's how it is....
I'm blessed in so many ways.....I sure can't complain, but I can vent, can't I? Pleasant Sunday to all....

By Rempt2 On 2014.04.21 20:09
Dan thank you for the article. What a great idea!

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