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By HangingOn On 2014.08.26 10:51
I miss the way we were. I miss the guy that I could talk to and get a response. I miss the laughter and facial expressions. My hubby has never been real nurturing or show a lot of emotions. But now to have a conversation and by the second sentence he is now focused on something else. I stop and he doesn't even realize. I mentioned that I was still talking and he told me the sentence he thought was the last thing I said, but in all reality he missed a lot of the conversation after that point.
The conversations we do have are of him trying to prove me wrong or him upset and aggravated with me.
I know life is about change, but I am struggling right now, missing the fun interactions we used to have. Missing sharing my every day events with him. ~Nancy

By makrivah On 2014.08.26 11:01
Feel my virtual hugs. I could have written your post.

By Freespirit On 2014.08.26 11:31
I so can relate to your post. Truly my husband is not the same person that he was 12 years ago, and yet since this disease has progressed slowly. . . he has changed slowly too into someone different so this really IS who he is. I don't know if that makes sense, but. . .
I was thinking this morning on my drive into work that, as difficult as PD has been, it has given me the time I have needed to prepare myself for losing my husband. I don't know what my life would have been like if I had lost him suddenly. Not that losing him will EVER be easy. . . I think that even the trials God sends us are customized.
I dont' know.

By JulieB On 2014.08.26 13:40
I so totally relate to what you've shared, Nancy. Michael and I haven't been able to have a normal conversation for about two years now. It's an odd kind of loneliness, because our loved one is still present, yet not. Hugs to you... xoxo

By HangingOn On 2014.08.26 13:52
Julie, you are so right. It is an odd loneliness. I am sure others that have not experienced this don't understand how I can be lonely, but he is right here. I am so glad we have this forum to find each other and realize even though we are sitting by ourselves, we are not alone in the journey. Hugs to everyone.

By makrivah On 2014.08.26 14:50
All the posts to date describe our situation to a "T". I am alone, but he is there. thank you for letting me know that it is not unusual. I miss the man I married every minute of every day.

By Marilyn-NJ On 2014.08.26 16:47
I'm a part of this club, as well. We've lost so much already but I find a glimmer of what he used to be each day. I miss it all, too.

By umajane On 2014.08.26 22:29
Oh my Hanging On.....I just opened the computer to write about this very topic. My husband is next to me but WHO IS HE? He doesn't listen or hear me so I speak quite loud and then he says I am talking too loud. I am tired of all this caregiving right now.....tired tired of the boredom at home.
I do a lot of things on my own or with family but "at home" time is getting me down. I know I have to change my attitude because it only makes everything everything worse. Thanks everyone for sharing....this forum is really a light in the darkest of times.

By jcoff012 On 2014.08.26 22:56
I am so sorry so many caregivers feel like this. I honestly do not know what would help you, I wish I did.

If it helps, please allow me to relate one of the final experiences my husband and I had with his dying friend and his wife, just last week...

Carl's friend had a massive stroke a year ago, so he has been slowly declining. Now, two weeks ago, he had the final, massive stroke and within a week, died. We went to see him to tell him good bye. When we walked into the room with the hospital bed, she climbed up to the bed and stroked his hair lovingly and almost screamed, "JOHNNY, Carl and Jane are here!" She then left us alone and we spent an hour talking to him, stroking his hand, and realizing his time was drawing to an end.

Then, we walked out to their deck to talk to her, try to comfort her, and offered to sit with him if she needed to get away or rest....Here is what she said, and I will try to keep it in my heart as our time comes to an end, or if I am lonely...

"Look around. See...and....and...? HE gave me all of this. He gave me his love. He made it easy for me to go on. We had 43 wonderful years together. He held me up when I was sick. I will keep doing the same as long as he needs. I love this man. For a year, I have had such loneliness...but soon, I will dwell in loneliness...But, in my heart, I keep our love...he leaves with mine, but I will keep his in my heart and let it grow each day until we are together again. He is my love."

Pretty powerful. I hope I have her courage and strength...I know I have the love.

I share this in hopes that coming here to say how you feel is truly heard...but, I hope to give you hope from someone who has faced the worst and still speaks so glowingly of her husband. Hugs and love, Jane

By mylove On 2014.08.26 23:44
I have a wonderful counselor that I see that lost her husband to cancer. She understands this so well. She calls this "pre-grieving". (And our spouses go through it too, btw). It's the constant process of readjustment, from normal to a new normal to yet another new normal, and the sadness as we leave behind what we knew. We are off balance, grieving, and lonely....and the person that we knew we looked to for support is going through not only their own adjustment from one level of ability to the next, but grieving the losses they are leaving behind along the way. It's normal for couples in relationships with a chronic illness to go through this. You are not alone.

She left me with a reminder that while it's normal to grieve during this process, it's important to not let that get in the way of loving each other at every stage. To grab what we can do while we can still do it. To appreciate the moments and to live in them as fully as we can, with our whole hearts and souls. She said "don't look at yesterday, or borrow trouble from tomorrow, but be fully present in today, as best you can." I love that. Jane, I think that's what your friend's wife has done, and her story is beautiful.

I liked the comment that this is somehow a preparation for harder things later. Maybe it is. Maybe we have to forge in the fire a little bit to be steel when our loves need us the most.

By HangingOn On 2014.08.27 06:36
Someone on this site mentioned the grieving process and it really shed a light on things. I read the article over and over. I never thought of it that way, but it was so true.
We do not have family close by, I do keep in touch by phone so that helps. When I start a project that I can call mine he takes it over. I walk to get some time to myself and see a counselor. Thank you everyone for the feedback.

By carman96 On 2014.08.27 09:41
I can certainly relate to the loneliness of having my husband there, but not really there to have an actual conversation with.
Jane, that is a touching story about your friend. I know women who have lost there husbands to cancer or an illness of a year or two. But with all due respect, Parkinson's is very different. It is years and years of slowly losing the one you love. The grieving process is so terribly long and the future is unclear. We don't know how long the journey is or how it will be in the end. It gets harder to remember the love you once had.
I believe the people like me who have posted about being lonely and their husbands not being the same are the ones who are dealing with dementia. That is the most difficult for me.

By jcoff012 On 2014.08.27 11:09
Carman, you know I respect you and you know I fully understand the circumstances are very different with PD...but, the loss and slowly watching someone go from being a world class architect to someone who needed to be fed, needed help with daily activities, and who slowly lost most functions is very much the same. His dx was dire, too...he was lucky to have been alive for the final year they had together. For Carl, it was a terrible see this man go from a mountain climbing, skiing sportsman to a man who constantly repeated himself, etc. was extremely difficult.

You bring up a very good point...We talked about dementia last night, in fact. The dementia, or even the total loss of cognizant thought, will be difficult and a lonely time. I am very sorry for all of you who face this daily. We are not there.

In this PD journey, as with any chronic disease, no one knows the future. It is difficult, almost impossible to imagine any future.

I guess what I wanted to say was that her message was one of love...when you get so far down, remember the good, the best of your life. It really helps. When you get so far down, remember you will survive...It may not be the same and you grieve for what you have lost, but there was a very real reason you fell in love so many years ago...I wish for all, that you have the continued strength to keep going. Knowing that there are so many others doing the same is sobering, but, in a way, comforting.

As always, we are in this together, and can offer an ear to listen, a platform on which to vent, and a loving heart to help in the darkest times. We are all friends. Hugs, Jane

By umajane On 2014.08.27 11:42
Thank you Carman and Jane. I have to count my blessings. We have been together almost 38 years, This is our second marriage...we have terrific grown children, 15 grand kids and have had a fun filled healthy life. We have traveled the world, worked and played together.
The PD is such a major adjustment and the beginning dementia has been difficult.
I think I need an attitude adjustment and will start working on that immediately.
At the same time I need to exercise, and take better care of me mentally and physically.
My husband has personal trainers, does Pilates and walks the I better get going and count my blessings

By jcoff012 On 2014.08.27 12:30
FIFTEEN grandchildren!!! Christmas, if you are Christian, must be a true holiday!!! I will think of you this year...our kids are grown and have moved away, and we only have Nigel and Emily, five and 10, so I cannot fathom what a joy it is to have so many!!!

You are a special person, Jane...keep posting! Hugs, Jane

By carman96 On 2014.08.28 00:52
WOW, umajane, 15 grandkids is so awesome!
I like that you say you need to take care of yourself better. I think exercise is the best stress reducer. It is so important that we stay as healthy as possible.
As for the as attitude adjustment, I will try if you will! Sometimes I'm just so darn tired and depressed it's hard to count your blessings. But grandchildren are certainly one of the best things in life, right? I have one natural and five of my husband's. I have been in their lives since day one so I am Grandma to all and I love then all so much. They range in age from 12 to 25. We even have two great grandchildren!

By carman96 On 2014.08.28 01:20
Jane, my husband was also an avid skier, waterskier, motorcyclist, etc. He worked so hard and played so hard. Over several years, he had all those things taken away from him. First he had to give up skiing, then motorcycles, then waterskiing, etc. He hasn't driven a car in over two years. It's just been so many years now, it's hard sometimes to even remember what once was.
Now he can barely walk without assistance. Add to that the horrible effects of losing his cognitive functioning, slowly but surely. It's just so agonizing to watch.
I am certainly not trying to take away from anyone else's suffering, and I am glad your friend can remember the good times.
I think it would be a good thing to start going through old pictures to remind both of us of all the wonderful things we have done together. Don't you think that is a good idea?
I know you always are thinking of others and are a good influence to all on this forum with your positive attitude.

By moonswife On 2014.08.28 06:40
Just when you think that dratted Mr Parkinson has changed everything, forever, along comes an amazing surprise. Mike could not get out and shop for our 45th anniversary yesterday, so he had German dinner all ready to eat when I came home from work. He is toast tonight, but I think he thinks it was worth it. Tasted great, and sweetest treat was the surprise.

By Mary556 On 2014.08.28 08:01
Carman, YES. A photo memory book would be great. A Speech Therapist at the rehab place worked on one with my mother these last few weeks. It helped Mom a lot. I'v been wanting to share this idea w/ you all & will write more when there is time. (it's very hectic around here right now!)

By umajane On 2014.08.28 11:27
Carman...that is a wonderful idea to perhaps make a special album of "the good old days" and yes we have had plenty of great memories. I will start working on that.....It will be fun.
Also as you mentioned exercise. I have been quite lazy in that department. I have been so busy setting up my husbands schedule that I have forgetting about my time. It will definitely feel good. As a matter of fact I vow to take a walk this morning as soon as I put this laptop down. As far as 15 grand kids go here is the scoop.
I have 7 from my 3 sons, my husband has 5 from his son and daughter and there was a remarriage so we adopted our new daughter in laws 3. They range in age from 5-23 and I m very involved with most of them. All healthy, wonderful kids and we are so proud of them and look forward to their future. Thanks again Carman for all the good ideas.....
Thank you for the motivation....just what I needed

By jcoff012 On 2014.08.28 18:46
OK, Carman, you have started two things for us, too...I am back to walking in the morning...I have been lax the last six months...six months, doggone it! AND, I told Carl about a scrapbook and he said, "How about Shutterbug online?" So, we are going to look into that tomorrow after his dentist nice to have photos from way back til digital ones from the present...

Michelle, we also need to put in pictures of Carl's and for you, Ben's, projects! This could get interesting!

Always something...Carl's sister was dx on Monday with advance COPD and has to be on oxygen...she had only the cheapest insurance, so I imagine that is yet another burden for us...I KEEP asking, since we found out on Monday, about her finances, etc...We live so far away...NC to CA...She HAS to have the oxygen...Thought maybe we could set up an account...we'll see how that goes, too..

Hugs to everyone...Carman, thanks for the nice comments, but life gives no one big promises...only choices...and, as always, we choose to make it through with a smile as long as possible...Hugs and love...gotta gather up our six boxes of photos...and old photo albums! lol Jane

By jcoff012 On 2014.08.28 18:48
Moonswife, that is so lovely...I bet every mouthful was delicious! Congratulations on being positive and having such a great husband! Hugs, Jane

By olpilot On 2014.08.29 02:20
I understand the feeling of loss each and every caregiver talks about, I too have suffered that loss. The loss of who I was, what I was and my whole reason for being. I too miss the loss of companionship that I once was able to have with my wife, my kids, and my family. Being in this failing body doesn't mean that I'm not feeling the same things you are, what it does mean is that I am less and less in control of my ability to be a part of that world. Everyday is a struggle to keep what part of me I can. Reality changes in my new and ever shrinking world, was that a dream, was that real, did it happen or is this just an episode of the twilight zone.

We just had one of the best summers we have ever had but always in the background was Parkinson's and for ever for us all it will be there. Whether I'm gone first last or somewhere in the middle this will always be a part of my legacy. Today I know that, will I next year or the year after remember who I was what I was and who I Ioved. This is what the future may or may not hold. For now all I can do is hold tight to whatever I can. When I first started on this sight I was an avid wood worker, now not so much, my coordination and strength have been deteriorating to the point that the shop now scares me. Who knows what the next 2 years will bring. Yes we all miss our loved ones but when you wake to a new and different reality and don't even know your self believe me the loss is mutual.

By HangingOn On 2014.08.29 07:19
Thank you Olpilot for letting us know how the PWP feels. I truly appreciate you posting this.

By VioletV On 2014.08.29 09:49

Thank you thank you thank you.

When I feel worn and tired and sad about how things are, I do need to remember that this lovely man, who was an effective and successful attorney, who raced sailboats, and jumped horses and kept bees and orchards and wrote exquisite letters that his friends hold on to and cherish, can't do any of those things any more. Whatever I've relinquished to PD, I have the opportunity, in the interstices of our life, to enjoy snippets of the-rest-of-me. Him? He never can, can't escape the reality of PD for a minute, for the rest of his life.

Tells me I need to just "chill" (as the kids say) and keep on going.


By mylove On 2014.08.29 09:51
Jane, you're right! I should be keeping track of all his projects. There have been so many amazing ones.

My boss has a husband who has something degenerative and neurological, though she's too private to say what. She has been using Shutterfly (I think) to make memory books of all their big vacations, etc. They go all over and bring back these amazing photos. She's making the books to share with him later. I thought it was a wonderful idea.

I've been trying to talk Ben into installing Pinterest, though I think he thinks it's just a girl thing. But he's always looking for new projects. I think it would inspire him. I know it does for me. I'm just too exhausted these days to start new ones.

By umajane On 2014.08.30 15:20
olpilot.....thank your your post and explaining so much to is very helpful

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