A Partner's Point of View?

[Dianni]

Hi all

 

I wondered whether any of you can recommend a book about MS from a partner's point of view?

 

My hubby is struggling and though he wont read the book, it might give me some insight into what he's going through if you see what I mean.

 

Hugs

Di

xxx

[Stumbler]

Di, the MS Trust have published the transcript of a "chatroom" discussion for partners. This may be of some use???

 

MS Trust Link

 

Edited 31 Jul 2010, 10:07 am by Stumbler

[Dianni]

Thanks John!

 

I have read an article or two written by partners on the MS Trust site. It's so hard trying to understand how Gavin is feeling especially when I'm not sure how I feel (If you see what I mean).

 

One of the ladies who participated said exactly what I would have siad in that Gavin seems to deny things need doing when I ask and sort of ignores the fact that I can't do things. It's a case of if I don't do it, it gets left. It's really frustrating but then he's always had me to do things so I guess he needs to learn that the housework has never been done by fairies and laundry isn't tackled with a majic wand

 

when I first got the dx he did sort of talk about things but it was all very bleak such as what sort of funeral would I like and what he'll do with the house when I'm no longer around. This was OK and I understood why he needed to talk about these things but I don't think he's moved on even though my imminent death in about 50 yrs time) still seems to be the overriding 'thing' in his head and it's as though every time I say I need help, he thinks it's a step closer to me dying.

 

I have told him I have no intention of dying and he's stuck with me for the next 50 yrs. I've also suggested counselling for him but he's a Yorkshire lad (worse he's a Barnsley tyke) and men don't do emotions or counselling!

 

Still, I'm getting emotionally stronger. I'm coming terms more and more with what MS means to me and how it's affected my life. I'm even beginning to accept my limitations (but I've still not used my newly installed lift and struggle up the stairs!)

 

I actually managed to talk to Gavin this week rather than shouting and screaming and even made a joke of a few things. I'm hoping that now I'm more comfortable with my MS and myself in general, that this wil rub off on Gavin and that I will be able to help him get over the shock and trauma and grief that he must feel but wont admit to!

 

OK ramble over (for now anyway!)

 

Hugs

Di

xxx

[Stumbler]

I've always considered MS to be a condition that blights a family unit, rather than just a person.

 

Anyone close to you, especially a partner, has to go through the denial/anger/acceptance cycle as well as you. This cycle of emotions maybe more difficult to manage for our partners.

 

[happyandy]

I remember when my dad had it. It was a misery for the whole family. I had all my dads friends ( who dropped off one by one) giving me lectures about how things have changed and not to worry I wasn't going to catch it as its not genetic. Because dad was on a gluten free diet we all were. Didn't stop the progression and it was rapid.

 

There was also the physiological effects. The man I saw as a hero, funny, could put his hands to anything reduced to standing peeing while me or my sister held a bucket. Later it became more difficult as his speech went and was pretty much incoherent. With this came belligerence. Making life awkward for whoever was trying to lift him. My mum said to me years later that she had planned on leaving him prior to his illness but when MS struck it was seen to be her duty to stay and look after him. She felt trapped.

 

It was such a relief when he went into hospital.

 

While its tough on the person who's life has been changed inexorably by this disease we have to remember the same thing has happened to the family members as well. They are going through the grieving process as well as to what they have lost. With me I got stuck on the anger bit until the day he died.

 

 

Andy

[Christina]

There's not much I can add to the experiences and advice already given Di, but just to say when I was diagnosed I think it was something of a relief for Rog. At last he had an answer to what had probably been going on for years! He'd had a hard time with my symptoms and my anxiety about what was going on and why I couldn't get a proper diagnosis. I'm sure, in fact I know, he'd come to believe I was suffering from anxiety and depression - I'd convinced myself I was too although I knew that there were very real physical symptoms that had completely turned my life around and which the doctors were hedging their bets about.

 

It's me now, who periodically tries to give him a way out if he feels he needs it - it's me who doesn't think I can cope with becoming more dependent on him and I don't want him to end up being my carer. He always says, 'but if the boot was on the other foot, you'd look after me wouldn't you'?

 

It takes a while to sort these things out doesn't it? We're still not there - it's a work in progress I think I'd say! As far as household tasks are concerned, as long as I tell Rog what needs doing he'll get round to it - sometimes not quickly enough for my liking but usually he does. I have to say that I'm still able to do most of it when I'm not relapsing - just in smaller doses with lots of rests.

 

So I agree, this disease can be just as difficult in different ways for our nearest and dearest. I think you and Gavin will get there Di.

 

Hugs

Chris x

[tdkstratus]

There's not much I can add to the experiences and advice already given Di, but just to say when I was diagnosed I think it was something of a relief for Rog. At last he had an answer to what had probably been going on for years! He'd had a hard time with my symptoms and my anxiety about what was going on and why I couldn't get a proper diagnosis. I'm sure, in fact I know, he'd come to believe I was suffering from anxiety and depression - I'd convinced myself I was too although I knew that there were very real physical symptoms that had completely turned my life around and which the doctors were hedging their bets about.

 

It's me now, who periodically tries to give him a way out if he feels he needs it - it's me who doesn't think I can cope with becoming more dependent on him and I don't want him to end up being my carer. He always says, 'but if the boot was on the other foot, you'd look after me wouldn't you'?

 

It takes a while to sort these things out doesn't it? We're still not there - it's a work in progress I think I'd say! As far as household tasks are concerned, as long as I tell Rog what needs doing he'll get round to it - sometimes not quickly enough for my liking but usually he does. I have to say that I'm still able to do most of it when I'm not relapsing - just in smaller doses with lots of rests.

 

So I agree, this disease can be just as difficult in different ways for our nearest and dearest. I think you and Gavin will get there Di.

 

Hugs

Chris x

 

I'm with Chris on this one. Mike used to get really frustrated with me. One example was when we used to go to the gym, I would use the cross trainer and he would often tell me that I wasn't trying and I was deliberately going too slow. The truth was I was going as fast as I could, it just seemed slow to everyone else. The part that hurt him the most was when I lost all interest in being intimate and sex. It was only after diagnosis that things started to piece together for him and he realised that it wasn't my fault as well as feeling guility thinking that I was 'putting it on'. Just after diagnosis, he would look at the MS websites looking for information on how to help me (unknown to me, I only found out not too long ago). We feel that the diagnosis has made us stronger and I am able to open up to him about how I'm feeling now (without feeling that he would just laugh at me or just think I'm making excuses).

[Tania B]

Di,

 

I wish I could offer some helpful advice as this something I'm working on. However, I found that when I left some MS related literature on the dining table my husband has taken a peak and commented later. It has been useful to let snippets drop into conversation and not to bring up subjects as big important ones. I'm learning to be selective and more subtle.

 

Tania x

[Dianni]

Thanks everyone. Once again you've proved what a fantastic group of people you are!

 

I know Gavin has been on websites, but in all honesty I think this has added to his pesimistic view of how the MS will affect me as there's not much positive stuff out there when you search Chronic Onset PPMS. (I know cos I looked too)

 

Gavin is not what one would call a social person. He never has been. He prefers to spend his time with his family and leave the rest of the world well alone. He doesn't do talking about emotions or experience. I have learned forthe most part that he has t get through things on his own or in his own time. It's just so hard for me to understand what he's going through and not be able to help.

 

I think that as I'm getting through alot of the emotional stuff that comes with a dx, then I'll be in a better position to support him and he will get through the grieving process too.

 

We are just starting to make jokes again. Initiated by me it has to be said but I'm hoping that he will now start feeling he can joke about it too.

 

I've written other posts about sex and intamacy so I won't bore you all again. I think that as I'm now beginning to see myself as a woman again and making an effort with my appearance and clothes then the rest will follow. We've really had a lot of stress over the last year what with the dx, the fight to get the alterations done to the house then actually getting them done. Our daughter came home with her 2 boys for six months just as we were starting the fight for alterations. It's hardly surprising that we've let our sex life slip! And as I didn't see myself as a sexual being I dismissed any and all of Gavin's advances. I think he then stopped seeing me in that light. I'm hoping things will improve on this front

 

I really do agree that the whole family has to go through the process just as I do. My mother was disabled with what we always believed to be MS. (It wasn't until my dx and 8 yrs after her death that we found out she had something different and knew it but never told us)

 

As I am living with it personally, I am going to get there first. I have to wait for others to catch up. I just want to see things from Gavin's point of view because how I felt towards my mother was very negative (for reasons other than her disability) and I am so frightened that my lot will feel the same towards me regardless of how many times they assure me they wont because I am not the same as her!

 

Thank you all so much again for all your replies and for sharing so much of your own experiences.

 

Hugs

Di

xxx

[jeni]

Hi Di,

 

I really do not have anything else to add to what has already been written.

 

Other than to say to you, that reading your threads and the love and caring that shines through for everyone, you will never turn into your mother.

 

Also Di about this book that you have been looking for? Any Chance that you could Pen it for us?

 

Take Care.

 

Love Jeni xx

[Dianni]

Thanks all

 

The funny thing is, that other than intimacy, we generally have a really solid relationship. He drives me mad at times but then I would bet everything I have that I drive him to destaction too sometimes! (I know, I know it's hard to believe )

Jeni --- thanks for the compliment thinking I'm capable of writing a book! But I couldn't do this one because I can't do it from a partners point of view. I do a bit of writing and even been published so you never know, I might just do one from my point of view!

 

I do know I'm not my mother and that I have a fantastic relationship with my kids, dad and brother. I just have a really deep understanding of how hard it is to be a carer. I looked after my mother and brother ffrom the age of 13 (ish) then my son was born with liver disease and I have been caring for him for 24 years! I am so frightened that I will become a burden (Not that Gareth ever has been. He's hard work, but that's different).

 

Gavin never spoke about his feelings when Gareth was ill and he was far more poorly than I'll ever be. I suppose I want Gavin to talk because that's how I cope and learn. I guess I'll just have to accept that he deals with things differently to me and work at getting him to open up a bit at a time.

 

Thank you all again for your support and taking the time to read and reply with so much thought and care.

 

Hugs

Di

xxx

[Tania B]

I wondered whether any of you can recommend a book about MS from a partner's point of view?

Di

xxx

 

Hello Di,

 

There are about 6 useful pages under tha heading "Coping with your partner" in a chapter titled "Learning to live with MS" in the following book:

"Coping with Multiple Sclerosis" bt Cynthia Benz abd Richard Reynolds (ISBN: 009190246-0). This is a revised updated 2005 version.

 

I would recommend this book generally. It doesn't address your specific question but I hope this may help in some way.

 

Tania x

Edited 6 Aug 2010, 12:35 pm by Tania B

[Christina]

I've got that book too Di, it's pretty good.

 

Chris x

[Jackie01]

Carlsberg don't make partners, but if they did they would be the most understanding partners in the world.

[Dianni]

Thank you Tania!

 

I'll look for the book on Amazon tomorrow.

 

Now Jeni your if Carlesberg made partners... That could be a whole new thread! I'm soooo tempted, but I'll leave it to you!

 

Hugs

Di

xxx

[jeni]

Hi Di,

 

I really wish It could be my partner, but I am totally teetotal.

 

Take Care.

 

Love Jeni xx

[Tania B]

I must confess that I haven't read that chapter through properly but I certainly need to do so today because things are pretty difficult right now. I'm being ignored and given no answer as to where M is going, for how long and left with a gut full of sarcastic, hurtful remarks.

 

Last night, I was told that it was hard to understand how I can be so dim and repetitive one minute and "sharp" the next and told that I was pretending.

 

Tania

Edited 15 Aug 2010, 4:46 pm by Tania B

[miss daisy]

hi tania

 

sorry i can't offer any advice just replying to saying i understand how that can feel and i can empathise with you.

 

sending you lots of hugs(don't know how to do the avatar inserts)

 

take care x

[Tania B]

Thank you Miss Daisy for you kind words. I feel a lot better now I've received an apology and we seem to be friends for now but need to talk.

 

Wishing you well

 

Tania x