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Topic Does anyone ever think about life without their loved one? Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2012.11.07 14:57
I am having a very heavy time lately and am trying to sort out my feelings so I can figure out what to do. I have recently discovered that one of the things I am trying to cope with is the realization of how much pain and sadness our future holds. I have lost several very dear friends and family in the last few years, some PD, some not, and miss them terribly and know that if I outlive my husband I will feel this way and worse many times over every single day. I think of those I have loved and lost recently and how hard it is to cope with, and how much their passing away has affected my life. I know I should not project into the future but I cannot help it when loved one after loved one passes away right in front of me and I am powerless to help or offer anything except my love and compassion. I know that love is everything, but it still haunts me that I was not able to alleviate their suffering or find anything that would help them.

I also feel so badly for my husband, it just breaks my heart. He is so uncomfortable, so tired, in so much pain, nauseaus, dizzy, it's all horrible and he tries to not complain and apologizes when he does and it is just tragic. The other day our little boy asked him how fast could he walk if he didn't have "that Parkinson's", as he calls it. It made my husband think of all the "what ifs" surrounding what he could do with our kids if he didn't have PD and really got him depressed. Then I felt horrible thinking about all of that myself and on top of it, profound empathy for my husband who is missing out on so much with our children. I hate that he is not getting the joy of seeing them in their activities or taking them to a movie or just watching a movie at home with them without falling asleep.

Some days I cope pretty well, other times things build and I feel so overwhelmed. I should count my blessings and shut up, I know, but every day I see him suffer and he tries so hard not to be a burden in any way, he feels guilty even though I tell him not to and I feel useless because I can do nothing to help. It's viscious.

By carman96 On 2012.11.07 15:28
It must be awful to have young children and have to cope with everything that you have to.
It is depressing to think of life without your loved one. It is a sad part of getting older that you lose people in your life.
I try not to think about what would happen if my husband passes away. He will probably go before I do since he has PD and is 5 years older than me.
The best thing I did this year was to lose weight and start exercising. I am off my blood pressure pills and am much healthier now. I did this for my husband as well as myself.
It is important as caregivers that we take care of ourselves physically and mentally. Try to find a little time for yourself. For me I find that even a short walk can clear my head a bit.
We all feel overwhelmed at times. Hang on and try not to think too far into the future.
As they say, hope for the best and prepare for the worst. Hope that doesn't sound too trite.

By jcoff012 On 2012.11.07 17:24
Lurking, if you dwell on the "what ifs" of the future, you will become overwhelmed with sadness, and you, too, will become clinically depressed.

When we first found out about the PD, I cried and said, "I cannot imagine my life without you." Know what he said??, "Jane, you are strong. You will survive." Just that short, just that simple.

People ask me how I/we have handled the last 5-7 years of all the sadness/illness/deaths in our family...I don't know, but we are still here and are together, with the commitment to take it one day at a time, no matter what the future holds.

Our lives are very different in a lot of ways, but in the end we all face the same ending with this horrible disease.

For us, 30 years ago next year, we lost our daughter to a pedestrian (her)/car crash the second day of her sophomore year. She was on life support for three days and we donated her kidneys (she was 15). Then my DH's Mom was dx with Parkinson's and my Dad died. In the last 5 or so years, we lost my wonderful 42 year old BIL to brain cancer; Mom had a heart attack, but is still here at 93; FIL died of lung cancer; son has testicular cancer and still has treatments for a football size tumor in his abdomen; MIL died after 22 years with PD; I was dx and had 3 surgeries for uterine cancer (just passed the five year mark); DH has Parkinson's for 3 years, but the latest neuro says he thinks he is actually in about year ten...and the list goes on...

I tell you this because I want you to know that there is life after PD. Al on here is my rock; he told me this the other day. I DO know that...it's just hard to face reality sometimes.

In no way do I want to minimize your struggles, I just want you to know that whenever I get down, I think there has to be someone who is worse off than me. And, sadly, there usually is. Just yesterday, we found that my husband's longtime friend and secretary is in her second battle against cancer, after an 8 year all clear.

I, too, wonder if I can make it yet one more time. You see, for some strange reason, the family thrust me into the "caregiver" for everyone...my BIL, MIL, FIL...and now, my husband.

Like Al said, too, PWP don't WANT this disease; or to be a burden; or make our lives sad...

I have known my husband since high school, have never had another lover/companion in my life (we married at 18), so we have been together for over 45 years...so, honestly, no, I cannot imagine life without him. He is *my* rock, my friend, and my life partner. I do not want to have a life without him in it. But, life does go on. Not the same life, but life.

Don't try to think too far ahead. One moment, our daughter said, "Love you, Mom" and fifteen minutes later, the school told me to go to the hospital. You just never know what life has in store or when someone's journey changes course.

All we can do is talk things out, share our wants, desires, and fears and do our best. That's all your husband wants...the best life you can have...now and later.

Love you and keep your head up. We all need to come here to say things we don't want to say around others that only these wonderful people can understand. Jane

By lurkingforacure On 2012.11.07 22:11
Oh Jane, I am really sorry about your daughter. I cannot even imagine.

I know life goes on, not always the life we want or would choose, but go on it does. I think I just never really thought about how hard it will be to carry on by myself. I guess this is a realization of the very real possibility, probability, that I will outlive my husband and it will be because of the PD. And an insight, now that many of my loved ones have passed away and I am experiencing the pain of those losses, of how I will feel when he does.

I know I should not look into the future, and that I should be grateful for today. It' s just so hard when my husband looks at me with such pain in his eyes and asks me "what's the point" and I don't have any answer and even if I did, I wouldn't be able to speak it because of all the tears welling up in my soul.
I wonder sometimes how much a person can handle and just don't know how my husband does it, day after day.

By Trusting On 2012.11.07 22:50
I'm so sorry for all the losses some of you have already endured. I don't have any children at home so I know our situations are very different, but my PWP and I talk about the future and even death. We just recently went and had our will and trusts completed to make things easier on us and our children. We talk and cry. He told me the other day he worries about me financially. He doesn't handle the finances now and it's hard for him to realize that both of us will be okay in that area without the other. Although I don't want to be without him, I also don't want him to linger on this earth with unbearable pain. One of my biggest worries at this stage is, "what if I should go first?" I am in good health, but a car accident could take either of us in an instant. I don't ever want him to have to go into a care center. There are some things in life that are just out of our control so that's why I and him just give it to God, one day at a time. Blessings!

By jcoff012 On 2012.11.07 23:02
I am sorry about our daughter, too, she was our first born and the light in my husband's soul. When she died, he died for a long time. You know how Dad's and daughters are...

Let me come back to you from a different approach...I told you that we have been together since high school, and are soon to be 65. So, I do know exactly how you feel about not knowing what your life will be like without him. I lie in bed at night wondering the same thing. It hurts me to watch him withering away; yesterday, he hit the gas instead of the break and we plowed into an embankment in a Safeway parking lot. He has NO problem with driving, but this shook him up. Sadly, I was scared...for him...I said nothing, but I know he's been thinking about it today.

As for the "what's the point", tell him you need him, you love him, and then do something to make him laugh. I have to repeat that my cancer team said over and over that laughter really does help anyone under stress. It may seem inappropriate at first, but try it...it truly works.

This horribly stupid, demeaning disease HAS no answers for any of us. Don't beat yourself up...You are facing a long struggle ahead. Try to remember all of the love and good times you had before PD. Hold onto your mutual love.

We watched my MIL handle my FILs death...she could no longer speak, but she sat by his bed, holding his hand...I didn't think she would last long after he died, because like us, they were together over 45 years. But, she lived with PD for three more years...with dignity...a Southern gentlewoman to the end...

You know, I asked my niece about her Grandma...she said she doesn't remember her as NOT being sick, so it was normal for her. "But, Aunt Jane, that didn't mean I didn't love her, or wasn't proud of her...one of the best memories I have was her patting the couch next to her to motion me to sit with her." ;) Not a bad way to remember someone we love dearly.

Hang in there. No one wants to be alone. Cherish the time you have...and vent when you need to. Love to you. Jane

By jcoff012 On 2012.11.07 23:07
Trusting,

Just a quick note...our "children" are 42, 40, and 34! lol They have been through a lot, too...

I think that part of the reason we are so calm about the future is that we planned our money, savings, and we were a part of MMIL's Parkinson's 22 year journey, so we may know more about the disease than most.

What I seem to need is the support and the answering of specific questions...others come on for other reasons...

No matter what, it's great to find people here who are non judgmental and who offer us hope and love...Jane

By parkinit On 2012.11.08 07:27
Jane -
So much, so very much. Just when we think we can't handle it, someone posts something worse that they have endured.

I want you to know your strength to endure everything you have survived is an inspiration to me.

It's another day. I'm dusting off the "sorry for me dust," pulling up my bootstraps and beginning a new day with a new attitude. :)

By jcoff012 On 2012.11.08 17:58
I am proud of you for picking yourself up, but I am not an inspirational person...just a realist. Heavens, we have had the end of life discussions, etc. I never want anyone to think we don't have questions or fears, too.

My husband is, and always has been, very handsome. Women have no problem telling me, either! A lesser man would easily have been a rogue...But, a long time ago, he said, "I won't cheat on you...if I ever find someone else, I will tell you, then leave. Not ever going to happen, so put it out of your mind."

Funny how life throws us a curve...he said to me the other day, after I commented about how good looking Brad Pitt was 20 years go, but straggly now... "No one could ever find me attractive now. The tremors and the drooling would HAVE to be a turn off." So, it was my turn to reassure him..."Gee, that's funny...two women at the salon said how handsome you were, and they would love to have you look at them with the lovely way you look at me," Was a real ego booster, but true.

I do miss the hugs and lying in bed all night (he rarely makes it all night now). But, I honestly have to admit that although the physical part diminishes, the memories of past tenderness get me through the hard times...laying my nightgown at the foot of the bed each night as we prepared for my Dad's funeral, sleeping in a hospital chair for five nights so I wouldn't be alone after the last cancer surgery, insisting on cooking both our meals until he no longer can, and just last week, taking me on an expensive, several hour long shopping trip so that I can say I truly had a "Pretty Woman" moment with two salespersons doting on me and bringing clothes TO me...lol...he is making memories, but I have a lifetime of them...

I guess what I am saying is we all have problems, but we all have great joys. When I need help, I know you all will be there..Just be assured I will return to you the same caring and support...and hope. Love always, Jane


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