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Topic Where have you gone my darling? Go to previous topic Go to next topic Go to higher level

By plcpainter On 2011.06.03 18:49
Most days I am The Brave, Stalwart, Patient, and Cheerful Wife, but not today. Today I am indulging in my feelings of being beaten down by this disease. Tomorrow I will put on my Brave Face again and persevere but not today. Today I mourn the loss of my Darling Husband who is lost to PD. A man who looks vaguely like him inhabits my house and my life but my Noble Warrior, My Gentle Lover, My Brilliant Partner is gone. I have lived so long thinking that IF we got the meds just right, IF we did enough exercises, IF we endeavored valiantly enough against this disease we could hold onto the essence of our love and our marriage. But this morning I came to the grim realization that I've lost MY love to dementia, to the drugs, to the ravages of age and Parkinson's. Oh there are tiny glimmers of the person of years past -- ephemeral moments that tug at the heart with tantalizing memories and dreams.

Tomorrow I will be brave again and calmly remind him who I am when he asks, yet again, "Who are you?" I will tell him again and again how much I love him and how much he's loved me.

Tomorrow I will change his diapers and move him in and out of bed, maybe 2 times that night, maybe 6 times.

Tomorrow I will be brave. But today I am grieving. How I miss you my darling. How I miss you.

By caregivermary On 2011.06.03 22:02
Thank you for posting. I feel your pain and I too am grieving for the husband I once knew. At this point in our journey you do wonder, why? it all seems so cruel. Take care

By jockdoc On 2011.06.03 22:05
Dear picpainter, You are not alone! Barb and I walked a simular path 5 years ago. There were good days and bad days over and over again. We could plan nothing. Pd was calling the shots. There was no relief!
We found a Support Group that helped some. The main thing we were taught is that we were not alone. Others were in the same battle with PD. It was after the first meeting that I saw hero's at work. I started seeing Caregivers as Hero's. I see Heroics every day as I read from the Forum. No one has a clue what we are going through, except the other Hero Caregivers.
I'm adding your name to my Prayer List and I'll pray for you and your husband daily. JockDoc

By shakydog On 2011.06.04 01:06
My heart breaks. Just as I know his has broken every day of your journey. Find strength with your friends here. Take care of yourself also. You have the tougher job - to survive.

By Pearly4 On 2011.06.04 10:47
I don't know if it will help or not but after we lost my mother (almost two years ago to the day from today!) I find the good memories and times replaced the bad very, very quickly. In a matter of days bad feelings and memories were starting to slip away and the good came back and replaces the old. It never completely disappears of course, but the good returns.

I know there are some differences between spousal love and comittment and a parent/child relationship, but I remember the same feelings of "where is my real mother?" while we were in the midst of the caregiving and feelings of loss. Living with Parkinson's and the Parkinson's patient is definitely a long, slow good-by.

By plcpainter On 2011.06.04 17:55
Thank you all for your loving, supportive words. I AM much perkier today :) Had a good weep with a friend last night, on the phone, whilst sitting on a bale of hay out in the barn. By the time I got back into the house my eyes were dry and I was ready to tackle the evening routine for bed. This forum has been a God-send. Thank you for the prayers Jockdoc, and thank you all for sharing your stories and listening to mine. Blessings to all of you!

By parkinit On 2011.06.06 22:45
You've been on my mind since the day I saw this post. I read your note with great sadness and much trepidation. I've been praying for you and then seeing little glimpses of possibly my future down the road.

By sunshine On 2011.06.09 20:01
I thank you for posting and being so open with how it really is. I feel so grateful for having found all of you and all that you share. I felt so alone in this with my husband and I too was having the same feelings but to hear someone else feels the same, somehow makes it all seem a little bit less daunting. And that there is hope and strength from within this wonderful forum. Thank you! Thank you!
Hugs and blessings to all. :)

By sannph On 2011.06.10 22:11
I, too, thank you for posting. Just last night I had a good cry after putting my husband to bed, because of grieving all our losses, and then I tried to count some of the blessings along our journey. This forum is right there at the top of the list of blessings! It is great to know that there are others on a tough journey and surviving, and as we help each other along, we will all be stronger and better able to cope.

By Michele On 2011.06.11 08:44
plc, I have the same thoughts and feelings but you have expressed them so eloquently that it has helped me to sort through them. It is clear how much you love and cherish your husband It is only this love that keeps us going on as caregivers. Bless you and your husband.

By floweringcare On 2011.06.26 14:09
I could so have writen this. i now recognize that the low days or hours are just part of the package. Understanding that does not make them easier, just helps me accept them as they come. This forum helps me know that I am not alone.
I am a new responder, but have been reading it for some time.

By firstnow On 2011.06.28 12:23
I am not the primary care giver, my mother is, but your post broke my heart. I see her future so clearly in what you wrote. Bless you. I am so sorry for your loss.

By ILoveWil On 2011.07.06 23:40
It is truly amazing how much love and support I am feeling right now as I'm reading your post and all the responses to you. I am new at posting but 4 years ago I began reading all the great advice this forum gave on caregiving for parkinson's disease. Now today I am in, what I feel are the last stages of my dear husband's disease. After he fell 3 weeks ago, surgery and now 2 weeks in Rehab, I am losing him too. Today I unashamedly held him and sobbed almost uncontrollably in his wheelchair, wanting to call him back, talk to me, hear me...telling him how much I love him and knowing in my heart of hearts that everything in my life with him has changed forever. I left the care and rehab center and cried all the way home. On June 11th he was talking to me, walking around our log home porch, eating himself, watching the sunset in the Smokies and now today after spending 3 hours with him, he could not speak a word and was zoned out. I am feeling very sad and depressed. My wonderful family doesn't know how broken I feel because I keep an upbeat spirit for them. They might think I have lost my faith in prayer if I let them know. I don't know any of the dear people who post here but tonight I feel a cushion of love and support from you. I can hardly see my keyboard for crying but thank you for sharing your pain with me too. I will pray for you as I hope you will pray for me.

By parkinit On 2011.07.12 14:59
The beauty of this board is that people are able to share their journeys - both good and bad. We share helpful tips and information and simply CARE for one another. We get the raw, unscripted, unbiased, unwatered-down and completely from the heart comments from one another.

Thank you all for that.


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