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Topic Does PD leave you feeling lost and lonely? Go to previous topic Go to next topic Go to higher level

By Lacy On 2010.11.11 11:51
I am suffering major loneliness as I watch my precious husband slowly disappear from me. In the past 12 months since he's declined so much, I've had to handle everything in our world by myself. I handle everything from oil changes on the car to whether we should buy a new one!! Yard work, house maintenance, finances, all of it has been a tremendous eye-opener for me! The man who took care of me and pampered me is basically gone and a new man has come into my life. One who is dependent, difficult, demanding, childlike, and downright (kills me to say this) burdensome. The new man treats me like a stranger, like his mother, like a nurse, not as a wife.

However, that being said, there are many moments of loving tenderness, lots of hugs and kisses.....all of which are actually painful for me because they're a reminder of what used to be.

Aside from the loneliness is the resentment that our lives have been forever altered by this miserable disease! We bought a beautiful motor home a year ago and planned to travel when I retired this December (which isn't going to happen either). As soon as we bought it, he began to rapidly decline. We used the motor home all summer but did not take long trips as I was afraid of how he would be while on the road. I do all the driving of course and the motor home was amazing because all his needs were met right there on board. Now all those plans for travel and retirement are down the drain and I fear I'm holding onto so much resentment that I'll become bitter.

I am a youthful and vibrant 66 year old woman and feel cheated out of the golden years by this mean and debilitating disease!!! I see couples our age going places, going out to dinner, movies, dancing....none of which is possible for us anymore and we're still young enough to enjoy all that but it's not going to happen!!

The loneliness is the worst though. I miss my partner of 46 years with whom I could laugh and joke and whine and complain. The man who loved to go shopping with me, would drop me off at the store, wait for me and pick me up, or come in and help me make decisions on clothes and such. I miss his loving attention when I had a headache, a crises, or a bad day. I miss that he was always there for ME when I needed him.

But I remind myself....we married for better or worse. We've had the better, now we're dealing with the worse.

Luckily, I still have my wonderful job even though the hours have been cut down to 30 a week which works very well for both of us. Without the social interaction with my co-workers, I don't know how I would cope with everything. I fear for the future when he can no longer be in the house alone and I'll have to give up my job. At the moment we have a young friend staying with us and he'll be here for about 6 more months. Without him, I don't know what I'd do.....he's been a godsend and does for my husband as much as, if not more, than I do. He's young and strong and is able to help move him from chair to bed to wheelchair, etc. But again, he'll only be here a short time and then I'll have more decisions to make - and have to make them all alone.

By sannph On 2010.11.11 15:46
Your post expresses exactly some of my feelings! There are days when I HATE this disease and all that it has taken from us. We've had so many changes; my husband retired at age 50 (is 55 now) and I've had to leave work to care for him as he can no longer be left alone. His speech has been greatly affected so one of the things I most miss is just being able to carry on a conversation. We do have a good support system of family and church friends; without them, I would be lost and going bonkers! And this forum is a HUGE help! When you need to, feel free to stop and vent---everyone is most helpful here!

By Allyn On 2010.11.11 18:33
This is the first time I have responded, but I have been reading posts for quite some time. It truly is amazing how every time I am feeling down I come to the forum and realize others are having exactly the same feelings and facing the same challenges.

My husband has also declined rapidly during the past 6 months. There are days when I just don't know how we will continue or where this horrible disease will take us. Fortunately we retired six years ago and have enjoyed traveling via motorhome and cruises. But now I can't plan tomorrow let alone what will be possible next week or next month.

By karolinakitty On 2010.11.11 21:16

By mrsmop On 2010.11.11 22:34
Lacy...I feel exactly as you do. I hate Parkinson's Disease, and also feel that I have been robbed and will not have much to look forward to in my recent retirement. I am 67, and this is my 2nd marriage. First husband also became ill. I too am lonely, and try to find activities outside of the home, as he has an attendant during the week. He's had PD for about 11 yrs, and had DBS. His PD has been progressing slowly but steadily, so I feel I'm in for a long haul. Yes, it helps a little to know that others share my feelings, but it still doesn't change the situation.


By Lacy On 2010.11.12 00:10
I have always been a highly optimistic person and try to see the bright side of every situation, never dwelling on the negatives... but this has really hit me hard - especially the last few weeks when I've seen such a decline in his condition.

He may still be the same person inside but I'm seeing less and less of that treasured person I married. He no longer enjoys movies as he used to, sitting outside and watching the sunset puts him to sleep, and the moments are rare when he remembers something I might bring up but when the rare moment presents itself that I get a glimpse of the man he used to be, I cherish and treasure that moment for a long, long time.

By Emma On 2010.11.12 05:20
Lacy, I too know exactly how you feel. We are human beings with normal human emotions and sometimes the stress of this is just too much. I retired at 55 to stay home with my husband full time so I know what you're feeling about that too. It's hard. I feel like our world has become very very small. We used to travel a lot, which I'm grateful for, but that's over. Doing simple everyday things together is nearly impossible. There are many times when I wish we could just have a normal conversation or a normal meal together. I truly understand that it is not his fault and I love him dearly, but like you it gets harder and harder to see the man he used to be. I have to keep reminding myself to try to see him as God sees him, something my grandfather used to tell me to do with everyone I met.

At this point there is very little that he can do. This is hard for people who aren't caregivers or aren't here yet to understand, but it wears you down physically and emotionally. I'm 59 and I envy my friends who can just hop in the car and run out to do something when they feel like it. I'm jealous when I see couples much older than us walking around the grocery store together or going into a restaurant. Most of my friends are busy going to concerts, camping, hiking, playing golf, taking classes, doing what "aging" baby boomers/hippies do :) That's not possible for us and yes, I resent it at times. Why? Because I am HUMAN and I have a right to feel HUMAN emotions and I'm not going to apologize for it. I wish we had a normal life/retirement ... both of us, not just me ... but I reserve the right to feel sorry just for myself sometimes. I'm tired of doing all the work, I'm tired of making all of the decisions, I'm tired of shouldering this responsibility alone. I'm afraid for the future; his, mine and ours. There's never one big thing but everyday there are a hundred little things and they add up.

I understand that my husband is the one with the disease, I understand that things are far worse for him and I'm not trying to diminish that in any way but right now I'm just talking about how this effects me, the second victim of this terrible disease. We do all caregivers a disservice if we ignore the sacrifice and toll that Parkinsons takes on us. We have a right to be selfish sometimes. We need to support each other and recognize the impact this has on us, physically and emotionally. We also have to remember that we are here on this board BECAUSE we are caregivers. There are many people in our situations who have given up and are no longer doing this job. We are the ones who have stayed and who struggle every day. We need each other to help us get through it. So yes, vent away. We hear you.

By gap2010 On 2010.11.12 06:44
Lacy and Emma, thank you so much for sharing your feelings. I love my husband and always will, but I grieve for the loss of the man he used to be. How we used to be. Everything has changed and many of my friends and family, truly don't understand the disease, what it does and why we are becoming so limited with what we can do. I have lost some friends whether it's me distancing myself or them since my husband has had this diagnosis. I know they don't know what to say and I don't bring up my situation unless they ask and then I try to be brief. I am 48 and my husband just turned 50 in October. already he can hardly walk at times, he's hearing voices and seeing things, has a hard time talking and is much more comfortable staying at home. This is not where I expected we would be but I did marry him because I love him and I married for better or for worse, in sickness and in health and I will remain with him because I love him and my commitment as well. I do have to say I treasure the good days he has because I see a glimpse of the man he used to be, how we used to be together. I am so thankful for those days. The other days we get through by the grace of God. I am glad we can come here and share our feelings without judgement. Thanks for sharing!

By NW_Raven On 2010.11.12 15:12
Thank you, Lacy, for leading the way into this topic. It was sad but reassuring to see the word “lonely” cross another caregiver’s lips. Loneliness is the foremost feeling that I have grappled with in the last year. I am 49 and my wife, 53, was diagnosed with PD two years ago. For a year or so, I have been distressed by a gap appearing between us – in our perception of her symptoms, in our plans, in our preparations for her future (which she steadfastly refuses to consider seriously), in slight changes in personality – and more. The product of this “gap” or separation is a sense of loneliness on my part. We used to be best friends, an extremely close couple, and devoted parents.

Now, with the children grown and the PD arriving, our roles our changing and she is having trouble adjusting. We are experiencing a major crisis in our relationship, caused by this and by her diminished capacity of deal with change. It is a vicious circle. I am totally committed to her care now and in the future. However, I am starting to wonder if we can successfully adjust to all this as a couple. Meanwhile, I have reached out to new friends (until now, I have had no close friend other than her), on whose support I am starting to rely. This helps me a lot but my wife is very uncomfortable with this change. I know I need this outside support. She does not see why. Yet another disconnect. I am trying to give her time to find her way through. Meanwhile, I have to survive, too.

By Michele On 2010.11.12 21:53
Hello Lacy, I am a little further down the road in my journey with this awful disease and how it has affected my relationship with my husband. For me it has been four years since he has become dependent on me for everything. I truly understand where you are and the loss that you are feeling. You have experienced so many losses because of your husband's PD. As you know, loss brings denial, anger, bargaining, depression, and finally acceptance. The first four can come and go in no particular order. I have come to learn that our darling husbands, like anyone with a serious disease, can be self-absorbed and unaware of the suffering of others. My sweetheart who used to be so giving and kind just doesn't see how hard it is for me physically and emotionally. I get overwhelmed and he doesn't understand why. I have finally learned (although not at all times) that he truly doesn't see it. His self-absorption is not selfish, it just is. It's part of the PD. This has destroyed the close relationship we once had. I now have to find support outside of our marriage where once he was my best friend and my rock. This forum is one of the forms of support - the only one where I can express what is truly happening and how I truly feel. I also found that I have to be "selfish" in taking care of myself and to fight for my right to be "selfish." I also thank you for introducing this topic. You are not the only one who feels lonely although you were the first one to say it. Bless you and keep coming back here for support.

By lurkingforacure On 2010.11.14 05:34
We are one of those young onset families with young children mentioned in one of the posts and yep, it is very, very hard. I mourn the loss of our family the most and the daddy my kids would have had but for PD. The daddy who could take the kids to the park, teach them how to ride a bike, play soccer, help with homework, give words of wisdom at those important times. That is all gone. Sometimes I wish we had been hit with PD later, after our kids had at least gotten to know what their dad was like before, and the wonderful daddy he would have been. Now all they know is a daddy who is too tired all of the time to do anything. It is beyond heart breaking.

Sometimes I wonder if it's easier with kids, though, because children have a way of keeping you in the now. At least occasionally. It's hard to be thinking of how hard life with PD is when you have a child yelling for help in the toilet NOW or you have to get someone to a birthday party in an hour and no gift yet, etc, etc, etc. If our kids were grown and I didn't have all of those distractions, I can see how hard that would be, as well. I feel it when our kids are gone from the house for brief periods and it's quiet, no chaos, no commotion. The quiet is nice, yes, but the PD cloud is still there, just as strong, perhaps stronger, as it now is fully unmasked and really in your face.

I guess it all really just sucks, for everyone. I won't even go into the friend thing, another heartbreaker. I am pretty sure that I would not treat me and my family as many have done if the situation were reversed, and that makes me sad as well. Or family of the PWP. I was talking to one family member of my husband just the other day and they were going on and on about how they had not been able to get more than six hours of sleep a night the past week and how hard that was....I was thinking "have they forgotten who they are talking to? that their brother has PD and we haven't gotten more than a few hours sleep at a time in YEARS?"

I've read Al's post and don't diminish it at all. I'm glad he wrote all of that because it's good to be reminded of how the PWP feels too. But we need to be able to vent and mourn and share and help each other too because as someone said, no one on earth knows what this is like except someone walking the same path. It is so very hard every damn day and I have yet to "get back more than I give", or maybe I'm just not seeing it. Today is just a bad day, I guess.

By parkinit On 2010.11.14 23:16
Yes, it does. But I adjust because I married "for better or worse." My spouse does things (not intentionally) that causes me more work, etc., etc., (the usual caregiver complaints), but then he said a few days ago, "My greatest fear is that I'm ruining your life, too."

My heart is his until I take my last breath.

By mylove On 2010.11.15 09:50
Parkinit, you took the words out of my mouth and the thought right from my heart.

This thread has opened up a great deal of dialogue in my house, and that was the exactly the thought I wanted my Shakydog to be able to take away from it all. Every time this topic comes up I wonder if he's secretly thinking of what a burden he is, and just won't say it. There's some historic precedence; he said it to me in the beginning of this all, and it's been the thing I've worked hardest to overcome. When you love someone, they are never your burden or trial to bear. That doesn't mean that life still doesn't leave you frustrated and tired! I think that's very, very important to separate, and have understood by both caregiver and patient alike.

I can see both sides of this issue pretty clearly, and I think both sides are honest in their feelings. Right now he's taking care of me because I've been ill. I understand the thought and fear, because I feel that way too - as if I'm visiting undue hardship on a goodhearted man who has enough on his plate without my issues too. I hope he knows that when the pendulum swings around and it's my turn to give that he need not fear that he's my burden. Everything I do, I do for him.

By Pick On 2010.11.15 10:29
"When you love someone, they are never your burden or trial to bear. "

No. I speak from personal experience when I say it is possible to love someone AND feel burdened by them at the same time. These are the type of comments I find hurtful and the type that drove me away from this board, because the message is if you feel burdened by your PWP then you don't really love them.

By Lacy On 2010.11.15 10:50
I agree with Pick.....I think you can love someone unconditonally and still feel the burden of them. I love my husband to fact, I think I love him more today than I did before he got sick. His personality has changed, in some ways for the better. Granted, he gets combative and argumentative at times, but for the most part he's sweet and loving and appreciative. I'm sure the time will come when even that will change. But for now I'm enjoying how he is as much as I can. He's not the same person I married, but then, neither am I in some ways.

One thing I've learned through this ongoing process of debilitation is that I have more patience than I ever dreamed possible. I've always been an impatient person, always in a hurry, always quick to move onto something else....but PD has taught me to slow down, take the time to enjoy what we DO have, and realize that he can't help the way things are and I'm sure he doesn't like it anymore than I do. So who am I to be in such a hurry to rush him along? He would if he could.

By the way, my mantra has been "It Is What It Is"....I came upon this at the very moment of acceptance after going through all the other steps of denial, fear, frustration, anger, etc. It is what it is, and nothing's going to change it so learn to deal with it as best you can. (still doesn't mean there won't be days of frustration and anger and "woe is me" though).

By Emma On 2010.11.15 11:30
Really this is just about semantics isn't it? The definition of "burden" is something that is carried, a load, a duty or responsibility, a difficult or worrying responsibility. I would say that caregiving is that. So is parenthood, but in both cases we carry the burden willingly. It's just that sometimes it weighs on us more heavily than others and we need a little help and encouragement along the way. I too love my husband and will be with him through whatever the future brings. I was also a caregiver for my mother (mental illness and alzheimers), my grandmother (alzheimers), and still am part time for an aunt (also alzheimers). All of those experiences were/are at times a heavy load to bear but I did it, and still do, out of love. I don't think the two concepts are mutually exclusive.

By mylove On 2010.11.15 12:08
"Potayto", "potahto".

I guess what hurts my heart the most is the thought that he would think that he was a burden to ME. Just my personal opinion, and not meant to be a sweeping generalization.

The PD is the burden. I guess we all share the load.

By rmshea On 2010.11.15 20:54
I like that, mylove--PD is the burden. Love is seeking out and providing the best for another; it's not always warm fuzzies and pink hearts. Our service to others, our devotion to getting them the best care-those are expressions of love even though we don't 'feel' very loving toward the individual at that time. It is not easy to express ourselves without seeing the looks in the eyes or the tone of voice..I appreciate the help and views of all I have read on this forum. As I read, I send up a prayer for each. Even the vents are helpful; I remember as an adoptive mom, I could not vent around moms with biologicals--they would look at me funny. Around other adoptive moms, we could vent about things moms do. It's important we each have a safe place to express our pains, distress..I hope this always continues to be such a place.

By mytngenes On 2010.11.16 15:43
Oh how I can identify with the posts here. Lonely is the perfect word to describe how I feel. My hubby is 57 and I am 54. Because of the drain on our finances, there is no way for me to be able to retire and stay home with him, I'll be working for many years to come. I have an hour commute to work, so I am gone for nearly 12 hrs a day...and I worry immensely about him when I'm gone from home. Most days, when I'm home in the evenings he is either absorbed with the tv or feeling so bad (pain) that there's no communication or exchange of conversation. I must take care of everything, make all decisions. There's no discussion or advice giving-he doesn't want to be bothered-and I know it's the PD talking, but it does cause extreme lonliness and hurt/grieving over what has been lost. Some days are better than others, but some days are really difficult.

My faith is what keeps me going. I just pray that I can continue to hold on and be strong, and be what he needs me to be and not totally crash and burn from the stress.

Thanks for listening.

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