swilkinson

Hey Kristen, although Ray's major strokes were in 1999 I still remember how I felt walking down the corridors and feeling as if I was in a freezer with sound-proofing, I had so many conflicting thoughts I couldn't actually hear what people said without it all sounding hollow and far away.

I remember the not-sleeping, not eating, not thinking about anyone or anything just the stroke, stroke, stroke. But almost seven years later we are still HERE.

Hope to catch up with you soon.

Sue.

H Lynn

We've been away but hope to catch up with you and Rod soon.

I'll try to get Ray back on one day (our time) next week.

Sue.

Wow. Sounds like you really see your situation in a whole new way!

Loving someone is the best thing you can do for them and caregiving is certainly a demonstration of love tough though it may be.

Marriage is for better or worse so let's hope the worst part is behind you and things can only get better.

Sue.

Janice - I had better read all your old bogs before you recycle them. Hope you are printing off a copy of each one so you don't lose the record of those early struggles.

If it seemed dark remember you were waliking through the Valley of the Shadow of Death. And look how far you have come.

Sue.

Welcome Back!!!

Glad you had a good time on Mauritus, a guy I worked with came from there and he told us IT was paradise, but family was hell...lol

It seems ages since we've chatted but you will be able to catch up with us all by reading our blogs and posts.

Glad you survived with minor fatigue problems. And were able to do the snorkelling etc.

Sue.

I know it says "Live the life you love" but sometimes you've also got to "Love the life you live".

It is frightening that a survivor can go on to have seizures, TIAs and other medical conditions detremental to their health and well-being. It seems extra unfair after putting up with so much and fighting their way back to something resembling normal. But it does happens. So you did the right thing, you "played hookie" and enjoyed the day as much as you were able.

Hang in there, life will always come right side up again.

Lovely to talk to you this evening. Hope you slept well.

Sue.

Find someone with experience, patience and compassion. A person who claims to be a professional and says the things she said ought to go back and retrain as something else.

Of course she probably graduated from the same school as the doctors who say :"No you didn't have a stroke" and then it shows up on the MRI.

Keep working on the exercises and see someone else in two weeks time.

Sue. :friends:

Start with those you come across every day, talking about your own experiences. If you can hook up with someone with recognisable physical deficits too so people can see the range of deficits that you can still survive with and live a reasonable life.

Because Ray has had a series of strokes over 15 years our friends also know it is a long term survival situation. NOT he stroked, he died. BUT he stroked and battled back to live a life. People need to know that what you did took courage and a lot of support. As a carer I need our friends to see stroke survival as worthy of support.

Sue.

Kristen, I just hate it when someone reminds me that the answer to my problems is more hard work.

Okay, I admit it, you are my inspiration, no more Strokenet, more housework...lol

Sue.

We are all night owls some times in our life. You can always chat to people like me who have day when you have night there.

Remember the sun never sets and night and day depend on where you are on the planet so set your clock to China time and keep on going...lol.

Sue.

Hey Lynn, you and Rod are in our thoughts. Worrying is second nature to a caregiver. I too have an occassional panic about the "what if's" with Ray and me. But so far, so good.

His bus is back, five hours off is all I get in a week. Better than nothing though.

Sue.

Bonnie I usually do have some small frozen meals especially designed for Ray and I have been using them when he didn't want what Trev and I are having. I've about run out because it has been a bit hot for a full on cooking day. I will however get back to that.

Ray is 63, he is working age, not old. This shouldn't be where he loses his appetite but seems to have been his condition for the last year or so.

I think what threw me was that he was so like my Mum, even to the expression on his face.

Sue.

"Sleep on it" has always been one of my solutions to problems too. You can wake up with an entirely different view of life.

A good night's sleep gives you more energy and maybe some of your dreams have returned.

Good luck with your early spring clean, you are certainly ready to get ahead of the game this year.

Sue.

Nice to see you blogging again Mary.

We do need people like you to reply and help the newbies just as we were helped when we first came on.

Sue.

Service elevator is good idea, Ray and I use those, bathroom is something else but at least ring and see if there is a locker room or somewhere you could use instead, we once used a cleaner's room.

It s a pity when businesses don't comply with disabled access but try and see it as their problem not yours. Ring and say:"We are coming to a function there and this is what we require." Then is is their problem and they need to offer suggestions.

Sue.

Or with something else in mind:

"Does my blog look big in this?"

Sue.

Keep on blogging.

Your thoughts were my thoughts when my dear dad died. The difference was that I still had my husband who had had strokes and my Mum who had dementia living with me.

I still have some regrets about my father's death as he died wothout his family with him. Mum and I had visited at lunchtime but he wasn't alert and we left after about ten minutes or so (that was as long as she could visit for). Although the hospital called us he had died by the time we got there.

I guess you have to remember what you did manage to do for someone and not regret that there wasn't a perect ending.

Sue.

Debbie

Lay back against the pillows, picture a beach, miles and miles of silver sand, hear the gently lapping waves, issssh, wooosh, issssh, wooosh.

Repeat that over and over until you feel better. Okay that is just an example but basically relax...lol

Sue.

Trevor and I have just been discussing having a Rolly's Recipes dinner night and inviting the family around. You have some wonderful ideas and although we have varying dietary needs most of them can be adapted to suit our own personal tastes.

Keep up the good work mate.

Sue.

Hey MM, we caregivers have mostly been where you are right now, but you and your family have a lot on going on right now and that may be why you suddenly feel so blue.

Remember to break everything down into small steps so you can see what you are doing, plan ahead some and give out some of the jobs to others. The kids, your parents and Richard may be able to help in little ways, kids can peel potatoes, old folk can shuck peas, little girls love to dust or wash up. Include everyone in the chores and whistle or sing while you work.

I know from our chats you love the bustle of family life but sometimes you have to have time out too so create a space that is just yours which, when someone sees you there they will just pass on by. Kids love the "special place" idea and may want one too. Sometimes talks on the phone or chats here can help break the tension too. Don't be afraid to take some "ME time".

I too miss my "old Ray" but increasing disability has ruled out all but companionship so I have had to accept that. Hey, we would be less than fully human if we did not feel it was all hopeless sometimes but I am sure a lot of prayers are being said for you right now as people view this blog.

As St Julian said: "All will be well, and all will be very well."

Sue.

Hey Debbie

I have a bit of an uncomfortable relationships with my sister too and she is a bit like yours but this weekend she said:"I tell everyone about you because I'm amazed by what you've done since Ray's strokes."

You are a survivor not an applicant for the National Housekeeper of the Year awards. You need to stress the long way you've come and the little help you've had apart from a MARVELLOUS husband and she will be the one who goes home envying you!!

And if she is well off she can afford to call for takeout for a couple of meals. Keep the phone number handy.....lol

Sue.

Lynn it is true that mostly we don't get help bcause we don't ask for any. And that superwoman image does create a barrier.

Good luck with the mylogram and do keep giving yourself permission to express your needs to others. It is not a one person job looking after someone who has had strokes, we all need a lot of support of keep us going.

Sue.

Beg to differ here, dear friend. In a real group in real time ( I did a group for 20 weeks as part of a chaplaincy program) ideas get distorted, arguments happen, huffs are taken. That was just six of us!!!

You can never know someeone or understand someone completely. At best we are all here to help, at worst to get help for ourselves.

You are an intelligent person and that is a bonus for us as you provide an insight into how the mind often works. But we are all present as charming individuals blundering through the universe in our own little capsule. We all do our best to be a link in the support safety net.

Cheer up, things can only get better (well in my metaverse anyhow).

Sue.

Susan

Ray and I just had two days away at my sister's house and even that was a break as my BIL barbecued and they have a dish washer.

Congratulations to Rolly for faring forth on his own and to you for making it happen.

Sue.

Sandy, I guess your mothers situation is a little different from mine as your Dad has a full time aide. I am Ray's full time aide.

Here we have what is called duty of care, so if I leave Ray even to go down the street or out for a walk one of the risks I take is that he will have a fall and injure himself. Then I am liable to criminal neglect charges.

It is a slippery slope for us carers as it is damned if you do and damned if you don't. Which is why I am pushing to get three hours respite a week.

Sue.