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Maria R.

My story up to now - Maria

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On the last days of this terrible 2017, and when it will be one year since I last spent time with Paul before everything changed, I just wanted to thank you all for the support you have given me these months and wish the best for you and your loved ones, 

Mariax

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Thank you Maria, may 2018 be a much better year for you and Paul. Hoping that he will continue to improve and that eventually you will have the life together that you had planned.

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Hi all, 

 

It's been a while since I last posted but there haven't been changes in Paul's situation, or at least noticeable ones that could bring any hope now that's been one year since he had his hemorrhage. He's been out of the wheel chair for some time now but as I haven't seen him (though keep calling every day) not sure how mobile he is. 

 

I'm writing this because this Friday I'm flying to the US to spend a few days with Paul (well, at a hotel close to his center) and his family told me that they would try to help me take him out of the center some time during the 6 days I'll be there (don't know the details yet).

 

So I keep thinking what would you recommend to be my response when he asks for the things in our life that don't belong to his life now, like when he says he can't find his phone, or when he comments about something that doesn't have any relation with now, or me, .. Do I try to make some correction? Is it worth for any kind of recovery? 

 

It's easier to deal with this situations on a phone call (upsetting as they are anyway), but I would like to make my stay count, even if it's only a bit, because I'm doing this for him, and because I miss him every day.. 

 

Maria x

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Hi Maria,

 

Thanks for the update.  This must be tough for you.  What I would say is judge for yourself when you get there, but before you see him, speak to his family and get their opinions face to face.  No matter what you have said by email, Skype or whatever, it's never as good as face to face, when you can judge the atmosphere, watch the body language and so on.  Compare what they say with the situation you find yourself in when you finally get to see him.

 

I think you have to play it all by ear.  It will be a tough experience for you but it may also be uplifting if you see progress that others haven't.  Nobody ever said his or your journey would be easy.  Recovery is a long and winding road and everyone goes at their own pace some  a lot slower than others, unfortunately.

 

Don't build up any false hopes, as that will set you up for a fall if reality doesn't meet your expectations.  So deal with what you see, hear and feel.  Speak to doctors if you can for their opinions and speak to family and carers, so you have as full a picture as possible.  Then sit down and analyse for yourself, if you can, to make sense of it all.  If you can't do it by yourself then sit down with someone you know and trust and talk it over.

 

Lastly, try not to over think things before you go - that is just torturing yourself.  What you have to deal with is what is - not what might be, so get the facts first and then put all the red herrings to one side and deal with what is left.  Only you can make those calls Maria but you have to do it with a clear head and by offloading as much emotional feelings as you can.  I don't mean to sound uncaring there, I just mean in order to do the best you can both for him and yourself by making the right decisions.

 

Good luck and please come back to us. I hope this helps.

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Maria I hope you have a lovely time visiting with Paul don't try to guess your responses just let things happen...

 

I'm not quite sure about the don't belong to his life now.

 

Let us know how things went take care honey.

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Maria thoughts are with you and hope your visit goes well with Paul, take care xx

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Thanks for your wishes Louise, 

What I meant (with my English being not my first or second language, thanks for the patience there) is that he has been in a center for more than half a year, not being aware of where he is, just making up the answer every day when I call (usually he is working, sometimes at a wedding..) so he doesn't have a phone, nor his money, his case, his home.. That's why I asked now I'm able to visit him again

Maria x

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Thanks for the detailed answer Macca, it looks like you read my mind (not sure if that's good 😁

I was counting on checking with his family (I'm staying at a hotel but I'm always asking for updates and I have made sure they know when I'll be there and my hope to make it count). 

 

I'll be honest and won't say I'm not overthinking because I am and have been these last days, but don't worry because I have no hopes on the outcome. I have got myself used not to expect anything good after this year, and keep writing some words to Paul every day (5 notebooks already and counting) telling him how he was on our call and how I feel, pointing out those little things like when he says my name,or how he is himself.. 

 

Yes your words always help, one way or another, so thanks again, I'll update when I get back

Maria x

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11 hours ago, Tina said:

Maria thoughts are with you and hope your visit goes well with Paul, take care xx

Thanks Tina for your wishes, warms a heart that needs a lot of that 

Maria xx

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Maria, just be aware that all our thoughts are with you and we wish you all the very best on your journey and hope that you get as much as you can from it.

 

Macca

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Hi all,
It's been one month since I came back from staying one week with Paul, but due to a small accident I haven't felt like doing much besides work.


On the whole and besides being mentally and physically exhausting, we had very nice times and very tough ones too, though I don't regret at all the efforts I put into making it possible.


When I arrived there his family told me that I could take Paul with me all the time I wanted to, which was a surprise. So we spent the first hours together out of the center to assess how it could work and it was smooth enough to make me feel we could spend all days together. But when we went to the center to get his stuff and medecines he lost concentration and disconnected enough to start an argument on some past memory with his ex wife that ended up with him breaking up with me.

 

It was so disconcerting and sad, I thought I would be able to get through to him on those difficult moments, but I was wrong. They told me about the sundown syndrome and that we should start it over the next day.


I was fearing he might not want to see me again, but his face lit up when he saw me first hour in the morning and when I told him that I was going to kidnap him for a few days (a joke of us).

 

So the next days I took him for walks (at the center it's easier for him to be lazy so he is still struggling with walking after so many months on a wheelchair), to eat his favorite food, we took naps and talked. And we had some long times when he was sure he had meetings and stuff to do and me trying to explain or remind him that we were on holiday or that he hadn't taken his car or that I was paying for everything or that we weren't meeting someone..

 

It's amazing how he forgets what he did a while ago and can hold on to one of these stories for hours. Those moments were tough and upsetting (I felt they were for both) and as he wakes constantly during the night very trying.


But we had times of us too, very nice times, when we walked holding hands or sat down and just were together or talked or when he got moved by the love letters, stories of our time together and all the pics I put together for this visit. And I knew he was really talking to me, reminding bits of this and that that came out in our conversations. 


And now I still call him every day, even though I don't know if he will ever come back. And I still miss him terribly and feel very sad, and not sure if my stay made even a small change for him.
Maria x

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Bless you Maria, i cant imagine how hard your visit must have been for you.

Huge respect for all your strength and love for Paul and how well you are coping.

 

I am sure your visit helped him very much, with all the special memories you both made before and now.

Sending you a big hug, thoughts are with you.

 

Hope you are doing ok after your accident?

Take care and keep in touch.

 

Love Tina xx

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Hi Maria,

I'm so pleased you managed to spend some time with Paul, as Tina said it must have been really hard for you.

 

I'm sure that you being there will have made a difference, you have been so strong throughout all of this, well done you.

 

Please don't give up hope, 

 

Sending both you & Paul very best wishes.

Love

Michelle xx 

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On 07/06/2018 at 17:54, Tina said:

Bless you Maria, i cant imagine how hard your visit must have been for you.

Huge respect for all your strength and love for Paul and how well you are coping.

 

I am sure your visit helped him very much, with all the special memories you both made before and now.

Sending you a big hug, thoughts are with you.

 

Hope you are doing ok after your accident?

Take care and keep in touch.

 

Love Tina xx

Thanks Tina, I don't think I'm strong, I doubt it some days but then I just have to keep waking up every day and hope that when I get home after work I can talk with Paul and maybe that day he will be able to chat from a quiet place (which makes a big difference in what he reminds of me and us). 

I don't have much pain now so working on getting better, thanks again

Sending love back 

Maria xx

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On 07/06/2018 at 21:22, Chelle C said:

Hi Maria,

I'm so pleased you managed to spend some time with Paul, as Tina said it must have been really hard for you.

 

I'm sure that you being there will have made a difference, you have been so strong throughout all of this, well done you.

 

Please don't give up hope, 

 

Sending both you & Paul very best wishes.

Love

Michelle xx 

Thanks Michelle, hopes are not very high now, I guess I'm still down after it all and with the accident and not being able to talk with him when I felt  so vulnerable didn't help. 

I'll keep waking every day and calling him and trying to connect any other way they make possible for us in case it may help until I can afford to go back to stay with him for a while. 

Sending love back

Maria x

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Hi all, 

 

I'm just talking out loud and though I do it many times every day, mostly to myself, today I feel I need to ask for your opinions: 

 

These last days every time we talk Paul tells me he thought I would go there the same or the next day. And he sounds so sad when I tell him I won't be going for a while because I still feel like lying if I agree when he is not correct, and I never lied to him. So I keep wondering if I should do it on these occasions and agree with his idea, because as you've told me it's his world and his facts, 

 

It makes me feel that I disappoint him for not being able to go and stay with him, so it's a vicious circle.. 

Maria x

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