tonytaylor

John,
I know it is difficult to watch someone you love suffer. My thoughts and prayers are with you and Paula.

Phil Raby

Rob, thanks for the updates, and for the support you're giving John and Paula.

Perhaps next time you speak to John you could mention that this thread has had over 650 viewings (way more than any other recent thread). No big deal in the great scheme of things, I know, but it does show that a lot of people out there care.

Cheers

Phil

Kahdmus

I know I echo the sentiments of everybody reading this thread when I say that there simply arent adequate words to express how sad I feel reading this thread.

Thanks Rob for giving us the updates and for passing along to John all of our thoughts and caring.

--H

JoeW

Rob, thank you for the updates. This is agonizing to read ... not much to say I'm afraid.

Joe

John Boggiano

Here I am.

I will call the hospital right after this to see how see is.

After I finally left her last night, she fell out of bed!

For pity's sake, how could anyone ever deserve this stuff?

She didn't injure herself (they have told me) and I thought it better NOT to go back last night. They now have the cot-sides up on her bed. Yeah, right, that would be useful for someone immobile, stiff and fitting - great idea!

Yesterday, poor, poor, Paula was confused and delirious much of the day. I spent hours and hours looking right into her eyes and we found that we could communicate even though her words came out all wrong and she couldn't make sense of mine. If she concentrated REALLY hard, we could 'connect'. Very moving.

She knows I love her and that if I am not with her I AM coming back...

So hard. So, so hard.

But we have so many good friends, who really know what the word means.

John Boggiano

After the visit I just made, I feel sure that a part of Paula has gone for ever. Maybe I misdjudged her lucidity earlier. She keeps asking me (in a kind of relaxed, easy-going way - this is Paual, after all!) why she is there.

She repatedly asks (all in a very gentle, quiet, non-demanding way) the day, the time and why is she there. She has sore buttocks and heels and is generally preety miserable, in a rather half-interested way.

Poor Paula.

Tomorrow, I MUST at least attempt to get our pharmacy open again, even if only for some reduced hours. Fortunately, I have found a locum to run it for Thursday.

Alarmingly, the hospital is saying they feel Paula is ready to come home. Huh?!!

Nobody has any idea how immobile she is (or what she was like before). Sadly, there is NO WAY I can let that happen. She will need to be watched 24/7 and need a lot of help at home. I was really getting beyond my limit before all this happened. I SO want to have her back, but I just can't! It will kill us both.

I might be on the point of getting out of the pharmacy day-to-day in a month or two - we are looking at taking someone on. But that's some time away and still leaves a mountain of problems...

Even I'm starting to feel I'm having a rough time too!

Thabks everyone for the offers of help, I really do get something from all the feedback.

John Boggiano

I'll be visiting Paula again in an hour's time.

Please, God, fix it all somehow.

DonW-Cape Cod

John, I just can't imagine what you and Paula are going through. It must be a terrible test of your faith.

I guess all us Rennlisters can do is pray. Take some comfort in knowing that there are hundreds if not thousands of us that are praying for you both.

mmccray

John,

Hang in there fella.

It IS extremely tough, and I know the feeling all too well. One gets all twisted up inside as the worry takes hold - what to do, why do I feel overwhelmed, why me?

Trouble is there aren't really any good answers for the questions.

I remember Brenda not knowing who I was, and really what was going on around her. She did recover somewhat, but I know that she isn't the same as before, and may never be, but sometimes that's just life.

You may surprise yourself about how strong you can be. But having been there - let me give you one piece of advice that I found truly worthwhile:

Try to focus on only one problem at a time and NO MORE.

Hospitals in the states are notorious for sending patients home as quickly as possible - whether you're ready to handle it or not. Somehow we just cope, but thinking of everything at once dooms us to excess worry - which won't help a thing.

You might see if you can solicit someone to watch over her when she comes home - at least for a while. Things may improve and you'll be able to better cope. I know that I really appreciated being able to get out and try to have some normalcy to life. It helped me to mentally cope with all that was happening.

John - I wouldn't wish it on anybody. Hang in there, God does pitch in when you really need him!

Marshall McCray

John Boggiano

Marshall,

Thank you for that advice. It sounds good and I will remember it.

Tonight, Paula was a little more lucid, 'though she did drift a bit toward the end of the visit.

She can't quite work out why she is there - she can just about deduce that it is a hospital. I tell her that she's been very ill, but that she is safe now, and in good hands - she just needs to rest and let it all wash over her without worrying about it. She trusts me that this is the best way to handle it, and the conversation moves on...

Even I, myself, realise that I am suffering in this more than Paula herself and that is something that makes me feel better as I wouldn't want it any other way.

Soon, they will be starting some physiotherapy and mobilty assessments (I don't really think they'll find much left in the way of mobility, however...).

I made a small error tonight which made her cry a little. Then again maybe it wasn't an error...

Paula is always telling me how she doesn't really have any friends of her own. (Yes, I know, Paula certainly knows how to tug the old tear glands into life!). I said to her tonight, 'You know how you're always saying that?' She nodded. 'Well then how come our house is full of flowers?','How come there's a thread JUST about your problems and how you are doing, on Rennlist, with hundreds of hits?','How come the mobile is full of text messages about you?','How come the email inbox is filling up faster than I can even read it, with questions about how you are and why do the phones never stop ringing?'

Thanks, everyone.



To be continured...

Edit: Arjan, you could do something for me...

Whilst I have a lot on my plate, I would like to set aside my Rennlist Moderator role. Arjan, I think you would be perfect to take it over for me - how about it? I'm sure if John D. has read your posts he will agree.

Jacks911

John, While I pray for Paula and you, I can't help but offer some suggestions - but sadly these may only work in the US or you have already covered these things. You have an MS support group nearby? - call them or have a local friend/family member do so. When Paula comes home you'll need a care giver to assist you & Her. Do you have Case Management services available. It's what my wife (RN MN) does for the Elderly and it can significantly reduce the stress, help you think more clearly & plan for ongoing care. And though you are to busy for this now, bookmark this site for the future - www.Caregiver.com [newsletters@caregiver.com]. Remember, You'll be caring for Paula - but somebody has to be there to care for YOU. God Bless you both.

John Boggiano

Jack,

Thanks.

This is the way I have to start thinking now - look past the emotional stuff towards the practical.

Back to work for me this morning. Yuck.

There is a lot of stuff above Paula's hospital bed, which includes a phone that she can use to call me any time (she'd have to ask a nurse, of course) and that I can call her on.

I will try to get moving on finding what support services are available for us when she comes out...

Her mother (retired nurse) and stepfather are going home tomorrow if she remains out of danger. To be honest, I'm looking forward to that. They've been here since the day before her fit, but her mother takes 'professional detachment' to extremes, even with her own daughter - she's only concerned with practicalities. When Paula was rushed to hospital, my folks drove her stepfather behind the ambulance (her mother and I were in the ambulance). He asked if they had time to stop so he could get a newspaper...

Her mother said to me, once Paula was admitted to the hospital, 'John, she won't ever come home and you mustn't let them try to send her - you need a life of your own'...

Paula's father had MS and I think it has resulted in this strange approach from her mother.

Fortunately, although they have stayed with me these last few days (and broken my shower, made the house a mess, asked my folks to do THEIR washing!), it kind of makes me smile that they think they are 'helping'.

Another word of special thanks here to Rob, who has been a rock for me, definition of 'friend' and a great help to Paula as she knows I call him a lot.

Youcef

John,

Enshala Khair....God help you and yor wife.

Youcef

Phil Raby

John, the trouble with inlaws, eh? I'm sure they mean well, but I guess at times you just want your own space. I guess they 'mean well'...

I remember when our first child was born (and please don't think I'm comparing that with what you're going through) both sets of parents turned up, and I ended up looking after them as well as rushing back and forth from hospital after a very unpleasant birth experience. It came to a head when I returned home one night and they were all sitting there. I asked if they'd got themselves drinks only to be told 'We were waiting for you.' Arrghhh! Although they'd come to 'help' they were more trouble then it was worth, much as I love them...

Anyway, not much help that, but I think Marshall's advice to focus on one problem at a time is sensible.

Take care.

Phil

Roygarth

Dear John and Paula

My thoughts and best wishes are with you both. My 2 year old daughter was diagnosed with cancer last year (100% OK now) and I sort of know what you are going through. I was amazed at how supportive it was to know that friends and family were thinking about us.

Kindest regards
Piers