Relationships and Parkinsons


#1
Hi,
Trying to get my head around somethinng that is bugging me.Maybe it,s the end of the line.Almost definitely me.How much of a strain does Parkinsons have on a marriage,relationship.I am trying to remain calm,but I think after 27 years together things are floudering.Am I too extreme,do I crave too much sex.Am I now a shadow of the man I once was.Am I spoilt,tainted,surplus to requirements.
I thought things were good,maybe it's all me.She said it is.My window has gone.I am devoid of answers.I sip another drink while she lies sleeping,is it me.It's not just pd with me,once I was strong,a Titan by name and nature.Does she sense this weakening,the giving up on life.Does she resent ever meeting me on that fateful day.
I have trouble showing caring emotions,fine in words,lacking in actions.That makes a person feel unloved.I never was loved,is this why?Sure I show sexual love,I always aim to please,tell her I love her,Don,t think that's enough.
Parkinsons is the ultimate test.Me,wrapped up in woe,what about my poor Wife.Has she given up,does she want the real me back,is she at a loss as what to do.I am.I think we are heading for crisis.Trouble is I'm past caring,blank to pain.Every time I try to convey how I feel,it is wrong,I am deleted in all quarters.
I have told my Wife to move on,at 47 we are still young.Find someone worthy,to take care of you,to be STRONG for you,to SUPPORT you.That is all I can say.Parkinsons worsens traits within us,exagerates them,splits up relationships or brings eternal heartbreak and suffering.
I feel for all you carers/Wives,Husbands,partners.Parkinsons is destructive,I do not embrace it.Maybe that's the problem.If anybody disagrees feel free to impart your wisdom.We have been together 27 years,married 25,but things are slipping and my hands are full of oil.It's all my fault.I have no solutions,have no more energy to give,she sleeps,i'm here,drunk again.
Titan
I await deletion.

#2
I hope they don't delete it \titan because this is part of PD for some people. I am sorry that you struggle so much with it. Maybe when you finally accept this thing, life might improve, easy to say I know.

So many people have lost relationships with this and despite your saying you don't have any love or feeling left, that is all i could read from your post, love and despair. Don't give up on her Titan, or yourself.

Caroline

#3
:neutral_face:hi titan,
Are these the words of someone who has had too much to drink or is this the real you coming out and sharing your feelings. Obviously I dont no you but you say you have been together for 27yrs. so just because this illness has come along why should things have changed for you. You sound as if you have given up on yourself and your marriage. Dont let this evil illness destroy what you have. If your marriage is worth saving then DO IT! Titan by name and Titan by nature go forward and give it a try.

#4
There is no way I can (or would) try to advise on your relationship with your wife. Only to say that 27 years is worth fighting for.

We have been together for 49 years, married for 47 this year, I am the one with PD and my o/h is taking on more and more of a 'carers' role because of the inevitable progression of PD the effects of which, I'm sure needs no explanation to you. I have seen and sensed his feelings of frustration when once again I cannot carry on and just need to sit/lay and do nothing. All I can tell you is that so far we have been able to tell each other what is causing the friction.

I know it is easy to write and say try to talk it through but I also know how difficult this is to actually do. Who starts, how do you both keep calm, how do you explain what and how you both feel - oh we have been there - and fortunately managed to get through and stumble on. Our way of dealing with everything is that from the beginning we agreed not to 'blame' each other but to stay united against the real enemy which is PD.

The main word I think is 'united' and from your post I get the feeling that at the moment you are trying to understand what is happening but seperately. Please Titan, don't give up on the 27 years you have both shared. Try to find the strength and will to reach an agreement with your wife that you both need help to get back what you are fast losing. Call in all/any help available - family, friends, consultant, GP - anyone who can perhaps sit and listen to both points of view. It does help. Don't try to do this on your own Titan, even if it is only to keep posting here.

#5
Hi Titan... I know they've deleted you before, but I, too, hope they let this one run.. because it is "real".. and just as we can truly encourage one another, sometimes encouragement comes in different forms.. no doubt all of us on here have our doubts and fears (I know I do... and some days they're not so different to yours!) - but there's the crunch - if only we were open and honest with one another the pain is aired,it is shared... some folk will help you as much as they possibly can... others will stay in the background, but be buoyed up by knowing they are not the only ones feeling that way...(i.e. you've helped them!)..

My reaction is to give you a "hug" because drink or not, you have "exposed" yourself and in itself that takes some doing... (does your wife truly know just how much you love her? What would she do if she read your words?)..and as far as thinking of her with someone else.. know what's motivating you, but best not to even go there - too disturbing/destructive... and in any case... my hope is that between us all we can help to restore your self-esteem and encourage you to really go for the next however many years any of us have got - I have trouble with doing the "live for today.." thing (esp. if I'm feeling rough) but it is true... so I honestly hope this finds you encouraged by the obvious support and empathy already posted... and, mate, don't give up on your relationship.. please don't..

Sincerest warmest wishes... bursardavid

#6
Oh Titan, I know you to be an honest, caring, sensitive soul but there is one person you insist on being unkind to and that’s yourself. You must stop taking the blame for having PD and learn to acknowledge – not only for your own sake but also for the sake of your loving wife and family – that you have many wonderful qualities which PD can’t touch. You’re a good man, Titan (with or without PD) so try to remember that.

With love

Lily x

#7
hello Titan,

I don't know if you are a religious person, as you've not said, in any posting I recall....but its me, nonnameme...and I'm sure you've seen some of my posts..I am putting you on my prayer list....with my lighting the candles...along with all on here.....we all struggle to get on...we do care what happens...I agree with the others, too....accept all the help you can from family, friends, doctors, etc.and try to keep your marriage together.

I also keep our prayers for a cure someday...soon. I hope today is one of your better days, whatever that may be. And please keep us posted on your life...xxx :grin:

#8
Dear Titan

It can not of been easy for you to share your inner most feelings. I hope in some way getting things of your chest has helped.

You and your Wife have 27 years together and 25 years of marriage, that is along time. (don't give up)! They say the grass always looks greener on the other side, believe me it is not.
Coming to terms with been diagnosed with Parkinson's, is a shock to the person who has it and to their nearest and dearest.
Partners will also struggle coming to terms with this. As it does and will change your life's. Plans for the future now have changed.
Her worries will probably be a little different to yours? Keep talking to each other that is important, so many emotions, anger, sadness,

Titan, I never look to the future, take each day and enjoy it, cherish those that love you dearly and think of the things that make you smile and happy,(like your grand children.) Take care T and remember you once said to me KEEP SMILING:smile: x

#9
Hi,
Thanks,I am really sorry.Take everything on board.Discussions,big time tonight.
Appointment tomorrow
appreciate all kind words and advice
Titan x

#10
Hi Titan, you have nothing to be sorry for.

#11
Titan, I am in the same position as your wife, it is my oh who has parkinsons, we have been together for 48 years married for 44 When he was first diagnosed both of us were shell shocked. We all have our own fears and my first one was I did not want to be a nurse, I wanted to carry on like we always were. I now know my husband is still the same person, just the complaint itself is making him different. Surely when you love someone there is nothing better than to just give them a hug if you can manage nothing else. Keep close and show each other love in different ways. Yes there will be hard days, I just take myself out for a walk to give us both space. Dont blame each other, no one is to blame, there are some wonderful people on this site all rooting for you.

Big hug Maggie.

#12
Titan - never spoken with you, but I am married 30yrs and would be lying if I said never felt any of those emotions since dx. PD is a S--T and no-one ever truly embraces it of should :exclamation: But we can learn to accommodate the demon and we carry on as much for our families as us. Good luck with your appointment I really hope things work out for you guys.

#13
Hi,
I suppose Five hours of discussions and Soul searching leave it impossible for me to elaborate deeply or fully on all that was said last night.Indeed some things should remain private and it would be wrong for me to divulge too openly here.
A lot was said,hurtful things,caring things,topics covered spanning all our life.My Wife reiterated what many here have said.Everything was covered,our ups and downs,hopes and dreams,Parkinsons,the future,my stubborness,reality,life,death.
Many home truths were hard to hear.Not just recent,but going back through all our years together.What is clear is,it is so easy for anybody,not only pwp,to get so wrapped up in their own frustrations,that those of their loved ones are so commonly overlooked.
Frustration,hopelessness,anger,sadness and loss.All build up over time in those who care for us with Parkinsons.Not once did my Wife question my love for her.Although,there I was discussing all the negatives and reasons why she should give up on me.Why?,i asked,I am useless,redundant,flawed and empty."Because I Love you"she said.Did I want to hear that?,well I was relieved,so must have.
So we move forward,try to make the best of things.There will be many more ups and downs,but with things discussed with Neuro today and hopefully a clearer outlook.I realise that,for now,the past cannot be changed,I think to much.I also need to wake up and regain some respect from the woman who loves me.The woman who has stood by me,even when I have continuously messed up.
We have not been together 27 years for nothing.That I think, is worth holding on to,a guiding light in the darkness.Yes,I will utter those words,of course,"I love her".
There is nothing like a good talk to clear the air,and to all those who took time to listen and respond to my inner turmoil.Helping me realise many things.I thank you from the bottom of my heart.
Titan x

#14
Titan.... so pleased you've been able to "report back" such positive steps forward..... so pleased, too, that you feel (and obviously know) you are talking to, not just other PWPs, but folk who know "where you're at" and indeed "where you've been" over these last few days...
I wonder just how many know that place and, ironically, just how many you have helped by baring, and sharing, your "demons" in the way you did..

But - you have also shown, proved, that even in the darkest place there is light - that such "demons" can be quieted... I think you have been really brave (although' you would probably say not) achieved a lot, restored a lot... and "spoken" to so many others of us in doing so.

Like you, I am an inveterate worrier - I think I should have been mentioned in the New Year's Honours List for 'services to anxiety"' ... so do know "that place" and have thought the thoughts you've thought - you've done more good than perhaps you know...but perhaps and importantly you've restored those bridges that you feared were crumbling with your wife - trust you will sleep peacefully tonight".. and be assured many of us will be thinking about you and 'rooting for you' in the days to come...

Keep in touch old friend... bursardavid.

#15
Write, write, write!

#16
dearest Titan
I echo all the good wishes and know that together you and your wife will reach a better place and find a way of living together in peace.
It will not be an easy journey but you are surrounded by love and the good thoughts of many. Stay strong.
Love GG

#17
Titan :arrow_right: Great news I wish you and your O/H a fabulous 2012 and echo all that has been said. Keep in touch.

#18
Hello Titan, It's so nice to hear that you have started to talk to your wife about things. I recently looked at the latest picture of you and your wife with your beautiful grandchild and you make a lovely family. As I have said to you on another site, when..... and I know you will....come out of that dark hole that you've been in...you will be an invaluable asset in helping others as they walk their long road to acceptance, of learning how to embrace what we have instead of mourning for what has past. Onward and upward my friend, take care.

Glenchass

#19
Hi Titan,

You have reminded me of my inner feelings when i was first dx but have since buried and forgotten only to re-enlight what 'might be' in the future. I just hope i can be as brave as you and your beloved in the future when the time comes to 'have that chat' as i'v e always known however uncomfortable it will be, at some point it will need to be confronted. Thank you for sharing and confronting these inner thoughts because at some point i believe this will need to be explored by the pwp or the carer/oh/partner involved. I have looked at my own matrimomial relationnship and think i may have underestimated the underlying bond we have (almost 25 yrs). Those vows we made 'in sickness & in health' actually count and i can't think of a better place to be when one is kicked down and vulnerable. I wish you and your dear wifey all the strenghth and love and commitment you both need to get to that next all important show off anniversary.

Love to you both

best wishes

Diane

#20
Hi Titan, me again:grin:
Hubby caught me blubbing over reading last few days posts, it made me talk and bring forth (all be it briefly)recent underlying feelings (yes ,i too had had a drink or three!)And guess what? ended up talking about relatives passed and so i dug out old diaries to confirm dates and ended up back in 1979 when we met and recalled diary entries i had made:flushed: i soon went from tears to laughter as we recalled the silly little things that i had written (age 15/16) Not sure what message i want to portray here other than i'm glad my hubby walked in on my 'down' moment and we were able to share some of our unspoken thoughts. It kind of put us/me back on a level track (that i thoght i was the only one vulnerable of falling off). I'm at the begginning of this PD journey and have had visions of the life to be expected that you are now experiencing and can honestly say it scares me on a personal and relationship level in similar experience to your own. so i thank you for sharing your demons as it gave me the opportunity to open up to mine to. I'm sure it will help other forum members too. I'm soo hoping that you can get through this dark patch and reminice on the good times and remind yourself that you have loved and are still loved.:smile:

thoughts are with you

Diane xx