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Topic What keeps you going...what keeps you positive? Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2013.12.03 17:27
As I sat here late last evening re-reading some of the various posts, it occurred to me that there is an underlying problem that needs to be addressed...at least, for me...for us...And, that is...what keeps you going through life with PD and going on in a positive way? If you read the forum, you notice the changes in some of the PWP as time goes by that make us sad; and, there are changes in the lives of the caregivers, too.

Lately, I have been more melancholy than usual. Perhaps it is the holidays, reflection on the loss of so many in our family in the past five years; or all of our very serious health issues...or, perhaps it is the current compassionate, yet soul-searching posts of our dear PWPs.

I need to be uplifted to be able to be uplifting to others. I need to know what helps you get through this disease. I honor all of you who are facing PD with such love and kindness to all of us here. I honor all of the caregivers so willing to help each other.

But, I, too, want to help others, and ourselves, in any way possible. Lately, I feel so worn out and tired. I guess I am just needing to know there is more to my future than watching my gorgeous husband fade. I want to help him without smothering, to be beside him, but not leading him down the path *I* think he needs to take...in short, I need to hear from you..what works, what doesn't...

By umajane On 2013.12.03 21:55
For many reasons holidays bring out a lot of memories of seasons past and therefore the sadness comes in. Although we personally have a large family we do not get together like we used to for various reasons as their are in-laws, other families, divorces etc. etc. So I think about how it used to be. My husband because of a little dementia does not seem to bothered by the emotional side of the season.
I stay positive for my kids and grand kids because I do not want to be a whiner or complainer. Everyday is an adventure at our house and although care giving can be quite tedious this is the hand that I have been dealt. It is still hard to believe that we are in this situation but I am extremely grateful for all the fun and good times we have had.....I am hopeful for the good times that are left.

By jcoff012 On 2013.12.03 23:20
Jane, I was in a "bad place" when I posted that, but I cannot apologize because while it was a downer, it was a temporary time. We don't remain in a "funk" for long. We fully understand what the future will be; I guess I just need to know that it is a common feeling that this overwhelming desire to take PD away from his life is normal. I cannot bear to think how this must feel to him, but I lie in bed at night wishing (call it praying?) for a simpler, pain free life for my PWP. I realize it isn't going to happen, but I in the darkness of the night, I sometimes need to put my feelings into words.

Then, again, sometimes late at night, I reread the forum and see things in the posts that show that some of the people I love here are struggling with life and death and doing it with more grace and courage than I have. I cannot help but wonder, selfishly, if I will become a less than helpful caregiver when he needs it the most. I am known to be very positive and to ask questions early on, but I also know that I am not patient and it seems that patience will become paramount.

So, I posted to learn from all of you. I admire those who so openly share their lives with PD, but my heart hurts that there is nothing I can do to help them. And, selfishly, I wonder when the time comes to say good bye to our friends and loved ones how we will manage without the love, caring guidance afforded here.

Hugs and thank you for commenting. Sadly, we truly are in this together. Jane

By umajane On 2013.12.03 23:41
Jane, on Thanksgiving Day my daughter took a picture of her Dad walking the dog looking so normal and happy. It was a great shot like old times. But that is not the way he is now it was just a lucky picture. Today coming out of Home Depot he looked so frail and old. It was a sad sight. He then slept 2 hours. How we wish for the good old days. Thanks for all your wonderful posts.

By ResistanceFutil On 2013.12.04 07:07
Jane, I so enjoy your uplifting, well-articulated posts. I believe we share the good fortune of no major financial issues, and I think having to worry incessantly about money in addition to health would make a difficult situation even worse. You are quite positive and always a breath of fresh air!

To answer your question about staying positive, about being uplifting, I don't know that those are requirements. My husband and I are in a second marriage, there is still some friction between step-children & step-parents, and we don't have decades of happy memories to sustain us. I would love to be positive, to be a source of strength and joy for those around me, but that's beyond my current skill set! (Believe me, I am grateful for those who are joyful and strong!)

Something from an earlier thread written by Al has me still reeling. How can I complain about my "lost life" when at least I can turn my back on PD for a grocery store run, lunch with a DIL or shopping excursion with a grandchild, but my husband can't escape it for 10 seconds. I think this was the reality check I needed, the correct perspective, the attitude adjustment.

I plan on getting by because of those short breaks, those moments of respite. I hope to feel more compassion for my husband and myself as time goes on. For me, doing less harm will be my light to follow - mustering the kindness for my husband when I want to snap. Hopefully those "emotional muscles" will get excercised enough so I can be positive and helpful to others, but I'm not going to burden myself with placing demands on myself about how I should be. Just getting through each day without hurting (emotionally) my husband and being compassionate towards us both may be the best I can ever do - and that's going to be difficult at times!

I truly am grateful, finally, for people who do have that inner strength, who had supportive homes to grow up in, who can now share their kindness and strength. That will never be me! But at least now I can appreciate your kindness for all and one way I plan on keeping going is to listen to your strength when you're strong, and others as well, and go from there.

By Mary556 On 2013.12.04 12:26
Faith and trust in God is what sustains my family.
"Love one another"... believing that is why we are here, we do our best and know that we will continue to receive the graces that we need.
It will not be easy. there will be difficult days ahead but we do not fear them. there is a peace the world cannot give.

By carman96 On 2013.12.05 09:54
I like to think that I am a positive person and that things will work out in the end. But the last couple years have been brutal as far as losing people to cancer and my husband's downward spiral. I do tend to get melancholy this time of year and even though my parents have been gone for years, I still miss them.
Thanks for the reminder to try to stay positive. Negativity can be a killer and what does it help? Not a darn thing!
I need to write myself a big note to be positive and be thankful for what I have!
My husband's neurologist told me she doesn't like the idea of daily journals, because she finds that people tend to focus on the negative. Makes sense to me.

By jcoff012 On 2013.12.05 11:05
A very quick note...we are in Eureka because we drove here for a retirement dinner...five hour drive...phew! What I need to say is that he made me proud last night and it was wonderful to be around his peers who appreciate him, love him, and ignored the tremors...there was a lot of asking him to repeat, but they were patient and kind. The BEST part? The man whom they honored was THRILLED to see Carl and said so many, many times...I had to leave the table to go into the bathroom to cry...as his once assistant knows me and followed me in, I told her that their love and kindness was the perfect solution to my latest bout of melancholy for him...her response? Jane, we ALL are here for you both, just tell us what you want and need...It is amazing to know that some of this loneliness of PD CAN be self-induced! We are getting ready to have breakfast before heading home...with six friends from last night!
Carl was touched and is smiling a lot today...wonderful experience!!!

By ResistanceFutil On 2013.12.05 12:41
What a wonderful, well-deserved gift for you and your husband!


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