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Topic Feeling like I don't matter..... Go to previous topic Go to next topic Go to higher level

By dkleinert On 2012.10.20 00:05
So many days lately I feel like my needs/wants don't matter to anyone anymore. It is an awful feeling. I miss feeling like I was cherished, loved and that my husband cared for me.......I feel so alone and like a slave to him and this disease......I know these are irrational thoughts, however, they seem to be coming at me so often lately as his disease takes more and more of him away.....he is so self centered and honestly never considers me in any situation anymore. When I specifically request something, he forgets or is sidetracked with something he wants to do or have, and what my small request was just was not important enough to think about again......if I am not feeling well, he could care less.....I just feel so alone and lonely for someone to hold me, care about me, value me.....yes, I know my customers at work care about me, but it is just not the same. I know my grandchildren love me - again - not the to all of you live with it?

By lurkingforacure On 2012.10.20 10:55
Hugs to you, we all have felt as you do. I just try to take things one day at a time. This is such a lonely and horrible path for everyone involved, and no one who is not walking it or lived it can really understand.

Sometimes when I am having a really hard time, I try to envision what I would feel like if I were the one that had PD....this is really hard and depending on how I am feeling, sometimes I can do it and sometimes I cannot. I have found, though, that if I can really place myself in his place and consider how I would feel if it were me and I had PD, I would cling to my husband like a life preserver because I would be terrified of being abandoned and I would be so very scared. Plus, I would physically feel like total crap. When I am able to do that, and really place myself in his shoes, I am overcome with compassion for him and I am ashamed of myself for feeling impatient, angry, frustrated, etc. This really helps me.

Like I said, I can't always place myself in his shoes, some days I am just too sad at what our family is losing and has already lost, too frustrated, angry, fill in the blank. But on those days that I can, it makes a big difference.

By dkleinert On 2012.10.21 20:02
lurkingforacure - you are a much better person than I am. I do have compassion for my pd husband. Most days I do from morning to night. There are just sometimes when I feel so used up and so empty - no more fuel left to care for him or me......thanks for your kind remark, and I am ashamed that I feel sorry for myself at all.

By lurkingforacure On 2012.10.21 22:23
I feel ashamed and guilty for feeling like I sometimes do, too, actually, quite often and more than I like to admit. We've talked here often about the guilt, it's a loser emotion. Try not to get sucked into the guilt...we are all doing the best we can and have every right to feel however we feel.

By parkinit On 2012.10.22 21:58
DK -

It does become a lonely disease for us as we lose our spouses to this disease. Many times, I mourn for what I used to have in "us."

You do feel like you are losing yourself and become a slave of sorts for another person.

Do you make time for yourself? Do things for yourself? Pamper yourself? Sometimes we have to do those little things for ourselves if our loved is no longer clued in or unable to do these things for us.

I often think I must occasionally "spoil" myself because there will be times (possibly in the near future) where I'll just have to buckle down and endure this awful disease with my beloved spouse.

No need to ever feel ashamed for voicing you feelings, thoughts or emotions here.

By jcoff012 On 2012.10.26 14:49
I agree. Don't ever feel badly about saying how you feel here...everyone feels like you do, probably more often than any of us care to admit. We just do the best we can and keep going on...

Sometimes the feelings overwhelm us and it seems we just cannot "do" this any longer. Other days are spectacularly wonderful. We talk about PD openly in our home, but our oldest daughter, at 40, cannot handle it. She is estranging herself from her Dad by her lack of concern (his opinion); I chose to think it is the opposite...I think she is scared and choses to pull away to not face the reality of this disease. To her Dad, she "just doesn't like me anymore, now that I am not the same person." It is hard to watch, but I know, in time, she will be there for him. Sadly, it may be at the time he will no longer respond as she needs and she will miss out on the opportunities now.

In that way, I think that that is the real crux of the problem with PD...not knowing what to expect, not being able to take this disease away from our PD, and not knowing how to help without making him/her feel they are being treated like someone who NEEDS help constantly. Imagine your life as the PWP, and to me, it would be unbearable...I don't want to be taken care of, I want to live a full life.

I asked my husband the other day, and he said, "Jane, I just want to get through this with dignity. It is what it is, I cannot change it. I will just do my best."

Nuff said. I do hope you come back, because there are times late at night that I cry, too...We certainly aren't travelling and enjoying retirement, like we planned. But, we have each other...for over 46 years and counting! Hugs, and take care of yourself, too. Jane

By parkinit On 2012.10.26 14:59
Jane -

My husband has a daughter near your husband's daughter's age. She, too, has pulled away.

Sometimes I understand - he has been harsh in conversations with her (as he is with me at times, however I cannot "run away"). She has chosen to stay away and only visits now very infrequently (2-3 times per year even though they live relatively close) and for a purpose to her visit. This make me sad for her, sad for him, sad for me.

It is evident that this disease is not satisfied with eroding the minds and bodies, but also greedily erodes the families of those afflicted.

By jcoff012 On 2012.10.26 16:11

My husband is sometimes harsh with me, and sometimes with our youngest daughter who lives close by...but, he has never been harsh with the oldest girl, in fact, I think he is overly kind to her. It is her loss.

Our other son understands and is compassionate...maybe, in part, because our son has testicular cancer, lost his hair, etc., but values life. Our youngest is an amazing young woman of 34, who is "treating" us to an after Thanksgiving trip to Disneyland with her husband and our youngest grandson, and has thought of everything, including staying IN the park, renting an RV for the drive down, etc...But, the oldest, who only lives 1 1/2 hours away will make excuses to NOT come up to is very sad for her to miss out on what will probably be our last time to make the 10 hour drive down there...

We'll see...what I am learning is that we have to take this stupid disease one day at a time...and then, be ready to change plans again!

I HATE PD...hate it...we are all losing ground in the fight, but thank God we still keep looking better times, as long as we have them...

Hugs to all, Jane

By barb On 2012.10.27 07:48
I hate myself for feeling so angry but we haven't been married that long and while I knew he had pd he kept other things from me. I feel more like a his personal assistant than his wife. I'm responsible for everything. I would never have built this house if he had been completely honest with me. We still travel. It isn't easy but we can cruise. Once I get him to the ship somebody else takes care of meals, changing bed linens etc. I don't worry about wet carpet and I'm perfectly content to read on our balcony if he is having a down. People are very nice and the cabin is never far
I think I'd go crazy if I didn't have a cruise to look forward to .

By phoenix On 2012.10.28 21:57
dk, I know exactly how you feel. Had a really bad fall on Wednesday (fell 3 feet onto rocks - over exuberant dog!), Nothing broken, but badly scraped and shaken up. Finally managed to go back in the house, he didn't notice the blood or anything...the next day he finally noticed I was limping and in pain. I told him what happened and got a few minutes of sympathy and that was it, he was right back to asking for this and that. I had to have a little pity party - I spend so much time caring for him, making all the decisions, doing everything in the house, etc - it would be so nice to have someone care for me once in a while.
Anyway, had a pretty rough few days and finally feel better today and over the pity party, but I don't think we need to apologize or feel guilty for feeling that way.

By cmonge On 2012.10.30 09:52
How fitting is this thread as I was just going to start one on this very topic. I am feeling more alone than ever now that my youngest and best friend has moved out to attend college. At least she stayed local and is only 20 minutes away. My husband has no sympathy or empathy for me at all. I am stressed and drowning at work and he is happily retired and does nothing around the house to help. I do spoil myself and go out with friends but it is not a replacement for the intimacy I have lost. I really want to cry every day for the loss of my husband.

By Jane On 2012.10.30 11:26
Today I just need to vent. I have been having a very stressful two weeks at work. Friday when I got home I told my PWP that I was just exhausted and needed to vegetate. He gave me five minutes then started with his needs and told me that I was selfish because I didn't even ask him how he was doing. When he began his usual accusations of my inviting people into our home during the night for a party, I just laughed and said that I absolutely could not tolerate this craziness tonight. Because he could not tolerate my going to bed early, just in case he should need for me to do something I got a pillow and blanket and fell asleep on the couch. I am 66 years old, my employer won't let me work part time, I can't afford to retire until I'm 70 and I feel I can't work full time and take care of my husband. As usual I had a good cry before going to work, which woke up my husband who needed to know what was wrong, which resulted in my feeling angry at him for not leaving me alone! Yikees!!!

By phoenix On 2012.10.30 22:17
Jane, isn't it good that we can vent here and know that others understand? Working ft and being a caregiver is like having two full time jobs and I really feel for you. I was lucky enough to retire in June, though at a reduced pension, and now I have no idea how I did it so long. The money's tight, but at least I have stopped crying every day. Please know that people here understand and care!

By lurkingforacure On 2012.10.30 22:53
To me, one of the silver linings about threads like this is that they help put things in perspective. I may feel overwhelmed at something going on in my PD-governed life, but then I will read posts about not being allowed to work part-time and having to work full time AND caregive full time and think, huh, I have it pretty easy compared to ______ (anyone here, lol).

Similarly, I might be frustrated at the 5 glasses on my bathroom vanity (again) or the ever-present slops on the floors and countertops, but so far we are not dealing with all of the issues that I know may be in our future. One day down the road, I probably will be there, but for right now, I'm thankful that things are not worse than they are. It doesn't make it any better, but this does help me accept things and appreciate the time that we have right now.

By tipplelady On 2012.11.06 23:02
hello, new here and feel like i am drowning. 41 years of marriage, the last 12 totally unlike the first years. I wish some doctor would tell me if all his symptoms are parkinsons! he has tunnel vision - a thought enters his mind and he is doing whatever it takes to fulfill his wants. does he still care about me and can't express it or, and this feels right, does he not have the ability to care for anyone except himself. he lies when he has no need to, he loves to sneak and hide things, candy, valium, food. it feels like i am trying to make life good for him and he is trying to make life good for him and hurt me in the process. i don't care anymore and i refuse to feel guilty for feeling alone and used. thanks for listening to me say mean things

By sunshine On 2012.11.07 01:10
I too am in the same place as each of you and I was going to come on and post how unhappy I am and how lonely and unloved I feel. If I allow myself to feel it is just plain too scarey. Sometiimes I feel like if I start to cry I will never ever stop. So much pent up inside and it really feels like there isn't anyone here to listen to my feelings. My husband, at the first chance he gets, with someone who pays any attention to me, nudges his way into the friendship when I am not around and I have no idea what he says or does but I end up completely isolated and judged very harshly. Time and time again I have come up against this and it is just so hard to cope with. I feel like I must hide away from everyone to avoid the critical comments or the snide remarks. He is a master at manipulation and I just don't know how much longer I can keep a stiff upper lip and carry on. Having the Parkinsons is hard enough for us both but all the games and manipulation compounds it and totally removes us from any intimacy in our relationship and keeps me isolated from anyone who knows both of us. I'm so sad that this is where we have arrived. I really don't know what to do anymore. I'm afraid and I am tired of all this now. I've been burnt out and come through it with some knowledge of how to take care of myself but it just seems that the mental stuff is getting so difficult to navigate. When he is around others, other than me, I often hear oh he is a really communicative fun guy. Then I ask myself then what is wrong with me that he can't be like that with me. Misery and picking at me I know is partly his frustrations and he's taking it out on me sometimes but I just don't understand the other stuff that goes on. I dismiss it to the Parkinsons but then I hear from someone that he is fine when he is out somewhere. I just don't get it anymore and I'm not sure that I want to anymore. I feel sad inside for me now. I feel alone and I feel so judged and isolated with him. He says mean things about my children who are now adults and after a period of their own anger now understand him and his victim stance and his manipulation. But I don't feel that I can go to my children because they have their lives and they sure don't need to be worrying about their Mom. I heard a very wise little old lady, when my children were small, that all your children want to know is that you are happy and doing well. I believe this with all my heart. And I don't want to ever burden them with my own issues in this life. It is for me to fix.
Thank you too for listening here. Sunshine's sun has gone behind the clouds for a bit. Sorry!

By LOHENGR1N On 2012.11.07 08:55
Sunshine, I don't know if this will help or if you're a state of mind to even hear it or want to. I will post it though because it arises from time to time here on the forum how We can act almost "normal" out in public. I'll try to explain this phenomenon, First we try to only be out in the world when our medication is working. When we know we'll present our best. Secondly we also exert ourselves to appear normal as the next person. We joke around trying to de-stress situations, to be accepted and not pitied. When out we feel people looking at us, we hear the changing of position or shuffling of feet in line if we're at a checkout fumbling with our change. We hear the sighs and muttering if we're moving slow or having a problem with a door or steps. Walking down the street as we drift from side to side or staggering like a drunk or walking slowly and someone wants to get by. We present our best personality many times to draw attention away from our lacks now. So people won't dwell on our symptoms. We're like amature second rate magicians using slight of hand to distract those we meet so we can create for a time the illusion of being well of being normal. Needless to say we can't do this all the time and also we know you with us 24/7 know our shortfalls. I know this doesn't help how you feel or make up for our actions from time to time. It's a humble attempt to explain another "quirk" of life in action and strains on inter-personal relationships living with Parkinson's Disease. Take care, best of luck and hang in there.

By Jane On 2012.11.07 11:35
When I used this page to vent, phoenix's reply just helped me so much. I'm sorry I didn't take the time to thank you, phoenix, before this. Sunshine, I want you to know that I empathize with your feelings. Even though our intellect knows that these behaviors are a part of Parkinson's, our emotional minds react with the hurt anger and frustration that the behaviors evoke. Take care and know that we understand your feelings.

By sunshine On 2012.11.07 12:27
Thank you Jane for hearing what I was trying to say and for your understanding and care and support.
And Lohengrin, I appreciate your valuable input firsthand from one who actually lives and breathes this horrible condition.
Thank you very much. I know that I will keep taking care and hanging in there.:)

By parkinit On 2012.11.07 18:38
For me, today, too, has been really tough. My spouse keeps losing a certain set of papers and then he asks me to find them. I did, once, then the next day he said he had lost them again and would I find them. I did and put them where I could find him (and hope he doesn't move the file again). I told him I wanted to be responsible for filing all paperwork in the future so we BOTH can find things.

Then, I tried to ask him where his bag was that he always has with him when we go out because it was time for a pill dosage. He doesn't remember to take the pills, can't hear alarms, and so I'm responsible for remembering to give pills every 2.5 hours. Anyway, when I asked about the bag, he snapped at me, "Can't you SEE I'm trying to talk on the phone!!" He had just finished a conversation and had hung up.

I said it was time for his pills and that was why I was asking and walked out of the room. At that point, I didn't care if he took them or not. He never said he was sorry, he found the bag and took his pills. I went for a walk to avoid retorting.

Later, again, after never apologizing, he said, "My leg bag is in the bathtub; I took it off." I said next time I was around that bathroom I would get it. He responded, "You don't have to go get it right now." I wasn't going to, but he assumed I was going to jump. SIGH. I want a husband. Frankly, right now, I feel like I'm someone's personal slave. Several people - even his friends - have said that they worry about ME more than him. They have encouraged me to get out of the house and get a job. He would have to have an attendant here with him if I worked.

These people that we married aren't the same.

I understand where you are coming from, Al, but it is a different place than where my spouse comes from. He DOESN'T care about what people see or think of him. He doesn't mind going out drooling all over the place and when I grab a paper towel to help him dab his chin, he tells people, "She worries more about the slobber than anything else. It doesn't bother anyone else." He doesn't notice the others that are grabbing for tissue, too. He just says it is my problem that it bothers me.

I've stopped going out so much because he doesn't care if he drools all over a table when we go out to eat or slobbers on the menu. Again, we don't go out much anymore. I feel isolated, alone and married to a different person.

Most of the time, I'm all about HIM, but today, I'm feeling sorry for me.

By lurkingforacure On 2012.11.07 22:22
parkinit, I was feeling horrible and sorry for myself and then I read your post and feel better about my situation and feel bad for you. What strange creatures we are, for in the process of feeling empathy and compassion for you, somehow my sadness at my own situation has disappeared.

But I am posting here to offer unsolicited advice, which is, I would get a part-time job you enjoyed. It will get you out of the house, which you sound like you desperately need. It will give you a break away from your spouse, who does not sound very grateful, which you also need. And it will put you with other people, which you also need.

If you cannot find a part time job you enjoy, I would consider volunteering part time for the same reasons.

Thank you for sharing.

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