LOVE vs PD

Living with Parkinson's Carers, friends and family
1
:confused:
Hello, I feel I must write this as I know many of you will recognize my fears.
I have been married to my dear wife L for thirty one years, I am not going to say
we have never had a wrong word or disagreement that is impossible , all that
precious time has slipped away in a instant . when we met it was a very special time ,we simply could not keep our hands off each other, a passion unmatched I was
thirty L was thirty six it was a magic time for us as it is for everyone when a new relationship begins. I had just survived a very painful divorce and had custody of my two daughters , my wife had never married and had no children yet she took on the role of Mother to my precious children with enthusiasm looking after them as if they were her own, it was a wonderful time.
The years rolled by my ,daughters are now 40 and 38 and I have five lovely Grand children I am 63 in September ,L is 69, and has been a loyal true partner ,we have had some hard knocks and L was always there she backed me ,thick or thin, and
then in 99 I was diagnosed with PD , at first nothing seemed wrong I had very few symptoms and life carried on as normal,things were to change I suppose it was
inevitable really , as the symtoms of this hated disease became more intrusive
and my wife was faced with the most horrible of tasks she became impatient and
sometimes very cold and distant towards me, as the PD was growing I felt our love dying, oh I still love and desire my precious lady, but the burden placed
on her is I feel becoming so great the prevailing attitude towards me is of uncaring or perhaps grudgingly caring is nearer the mark, I hate myself for erasing the warmth and closeness that we had ,I feel unwanted unneeded and we
co exist in a rather chilly relationship now, Its not good, I am needing her
more and more when she is becoming more and more cold and hostile,there has been
talk of visiting her friend in Spain for a week or three and I have encouraged
this as I know the strain is reaching breaking point for her it may help to get away from this sad situation even if it means the ultimate sacrifice and I lose her god knows it must be unbearable to see her once very capable partner reduced
to a very different person, a wreck in many ways, the benefits of the recent
Duodopa have not unfortunately not improved matters so we shall see.
Kindest Regards fed
2
Nothing I can say will help at all fed, but can't not respond. Thinking of you and others in similar situation, and wishing you well.
3
A very honest post Fed. Would it help to get someone in a few days a week to relieve some of the burden from your wife so she can be your wife again and not just your carer?

I'm 34, single (well except for my life long companion PD) so I've been thinking lately should I find love and ultimately burden the one I find with my PD? Knowing the possibilities of PD at the very start of the relationship, is PD the cost of loving me and should such a debt be incurred?

Love is complicated at the best of times...

dr jonny
4
Fed,

Honest posting, perhaps your wife just needs time with her friend to be herself, hope you don't lose her.
Thinking of you both
5
Hello Fedexlike
Like the other respondents, I really feel for your situation and hope that a holiday will enable you and your wife to be happy together again.
I wonder whether your mention of horrible tasks is a reference to incontinence. While your wife is away you will have different carers, see if their way of dealing with incontinence gives you experience of a better way of dealing with it.
I would suggest that you make an appointment with your local incontinence nurse. She should be able to offer advice to you and to your wife on the best products and the best way of dealing with it.
When your wife returns from her holiday regular help with caring for you may be enough for her to carry on again. As a carer she is entitled to respite so you could try to make sure she arranges it.
Very best wishes to you both
Hatknitter
6
Huge respect Fed. You’ve given all your regular readers much joy and comfort yourself, it’s time we helped you. I agree with others, maybe all she needs is some space. And tell her how much you love her, and tell how much you care.
Thinking of you both
Semele
7
Hi FedEx,

I know that I am nowhere near the same person that I was, before Mr. Parkinson came to call, and of course we are all getting older, and lots of things are going south, & passion often wanes , even in 'normal' relationships.

Because we are clearly not 'the same' , it is sometimes difficult for spouses to look upon us in the same light I guess, no matter how deeply they may have felt for us previously, and hard as it is, I think that we need to try & understand this, and I try to compensate for what I no longer offer in our relationship, by giving/ doing/ saying /providing other things , but in different ways.

This of course has not been and is not now always easy, for either of us , but the important thing we have found is to try, and of course to talk it over, again not always easy, but worth trying.

We have a PD sufferer friend who felt things were not right at home and getting worse, and recently, she took the softly softly approach to the problem, over a weekend away , and was surprised at how successful this approach was compared to previous 'confrontations'.

However, she tells me that they have settled, of necessity, for a somewhat different relationship, cemented by their underlying feelings for each other and their family.

Don't know if I have helped or hindered, but I hope it is 'helped', even by knowing that you are not alone in having these feelings.

Good luck.
8
Hello
Thank you all for your kindness and advice, unfortunately the long post I have written explaining the situation up to date disappeared into the void, I am so annoyed I will have to go or this laptop will be joining the ISS IN ORBIT ROND EARTH. FED
9
:disappointed:
Sorry about my last post, I just never seem to get my head up now staggering from one crisis to another, and feeling increasingly more isolated, the situation is not getting any better and if you throw into the pot the fact that, the suggestion
of a break in Spain has been agreed but not for me, and it isn't Spain, its the Lake District at a friends Holliday cottage ,a male friends cottage she insists
she is going with two of her buddies but I met one of the ladies while shopping and she knew nothing of the trip,so you can see my fears, I will not give up but at what point does Loving become detesting , BLACKHEART can find a way, so many ways to crush the human spirit, and this one my friends is by far the worst.
Kindest regards fed
10
Fedex

I have just read this post and my heart really goes out to both of you. When I was going through one of the most difficult periods of my life, you were so honest and brave, providing me with support and comfort.

What can I say? As a wife and supporter of PWP, I do find that I need to have breaks, just to be able to think and do things for myself. Be myself. I always go away to Lanzarote once a year with a friend to relax and have fun. Do things that would be difficult (and hurtful) if I was with my husband - dancing, long walks, etc.

As you know, I was extremely hurt by my husbands behaviour and have just undergone a course of counselling. It was a great help , cleared out a lot of bad feelings that I was harbouring towards him and life in general. Has your wife undergone counselling?

I do agree with the other posts. Additional support should be sought to enable her to see more of you, her witty, intelligent husband and man, and less of Parkie

I really do not know what to say about your suspicions regarding another man. Just remember that at the moment they are just suspicions not fact.

Just remember, you are one of the kindest, uplifting, most amusing contributors to this forum. .All my love,

Neddie
11
:frowning::disappointed:
Thank you Neddie, and all of my dear friends for your support, I feel I am going
to need it, all sorts of things are happening, things I feel I cannot share at this time suffice to say that plans have , as I understand it are well advanced
I cannot say more as I am hoping it will all be a bad dream and I will wake up
as in my Night terrors.
with regard to councelling, when suggested I simply received NO so that's that.
However the Idea of regular breaks allowing the pressure to dissipate has met with approval so that might save the day so fingers crossed.
I have too much to lose so I will try anything, but I feel the trust that once existed is being stretched to breaking point, once again thank you all for your
support. fed
12
Hi Fed

I don't post often but I just wanted to say my heart is with you. This is such a cr-p hand we have been dealt with, and our emotions and relationships are not made any easier by it.

Life is hard anyway and pd makes it that little bit harder xx
13
:sunglasses:
Hello Seabreeze, thankyou for replying , yes life can be difficult at times but we must not let Blackheart win,also things are looking brighter on the home front
I decided to bite the bullet and cleared the air within a 40 mile radius, turs out my dear wife did not realize she was being so very offhand with me, and
regrets her behavior , things are running much smoother now and long may they do so, thank you all for your kindness and support.
Kindest Regards fed
14
Hi fedex,
I've been following this thread and you won't believe how glad am I to hear a corner has been turned! Hope all goes well for you both from here forward.
Regards Tractorman.
15
:sunglasses:
Hello Tractorman, I am very glad to say that things are much better now, we are on the same wavelength at last. but it has been awkward at times as having allowed my first marriage to drift into the rocks I recognized the same signals and was worried ,thank you for your kind concern .
fed
16
Hi fed

I am so glad to read your positive post!! Love and best wishes to you both xx
17
:grin:
Hello Seabreeze, thank you for your words of support, I was very worried for a while and felt I was about to fail, its amazing what can be achieved when you sit down and talk about the problems causing the problem? I am not suggesting a mutual appreciation society here but all the kindness shown me by all who have
expressed concern at my predicament has humbled me, the very fact that we have never met , but I feel I have known you all for years, and if that sounds soppy
so be it, I will do my very best to keep up as this forum is priceless.
Kindest Regards Fed
18
Hello Fed,

Delighted to see from the posts that you and your dear wife are back on the same wavelength.

Take care and best wishes to you both.
:wink:
19
I read your posts with a mixture of sadness, worry, relief and anxiety. I do worry about what might happen in my own marriage as my PD advances.

I can feel the changes in my body slowly advancing,creeping round me. I am not the woman he married any more.

But then I think to myself, he has dodgy knees, dodgy hips,dodgy thyroid, high blood pressure, grey hair and has put on 4 stone since we married 22 years ago so I think he's changed much more than me !!!

I am much more active than him and we decided that I would probably be wheeling his bath chair around rather than the other way round!!

I do hope you resolve your worries Fed and that you have another 31 happy years together.

Caroline
x
20
Dear fedexlike,

For some reason, I just picked up this thread today for the first time. Reading through it was a deeper emotional experience than I could have expected. I was so relieved to get to the happy ending!

During the first posts, I was thinking that perhaps your wife seemed cool and distant because she was (consciously or unconsciously) trying to protect herself from pain. It is so hard to watch someone you love suffer any disease and especially one as visible as this one we have. I know my husband had great difficulty with my PD until he was spared the rest by an early death at age 70.

Hope you're enjoying that outing with your wife and your friend! Much happiness . . .