swilkinson

It is good to get with other caregivers and find we all have similar problems (though some people's seem MUCH worse). When Ray and I did the six week Tuesday meetings in a row with the Community Stroke Support Team I noticed a difference in my attitude as I was able to get an overview of Ray's condition and my reaction to it rather than just doing everything as a knee jerk reaction to the presenting situation.

I guess like me that you are now seeing the broader picture 16 months down the track for you 7 years for me, where you know what Rolly has got back, what he will get back and how you will live with that situation.

Hang in there, there are still good times ahead. And maybe now he is posting recipes again you can keep him busy in the kitchen.

Sue. :friends:

Hi Chris

I saw on our news last night how hot it was in England and laughed. When we lived in Narrandera it could get to 118 degrees mid-summer and not get on the news.

I'm glad you are able to sit and chat with Trev, Ray was like that in 1999 and it was the 2005 stroke that seemed to block his thought processes more. It is sad when I know that he now does not understand the content of what I say unless I use short sentences and lots of breaks so he can follow.

Is there a person on the council that you could go and see to help you put some pressure on to speed up the job? Just a thought. It is all such a slow process otherwise.

Sue.

Thanks for sharing Mel, I really love to see other people's photos, it is like a little glimpse into their world. How nice to live on main street in a small country town. A bit like Yass, one of the towns we used to live in. We actually had trees up the centre of the street and you had to remind people not to back out into them. One friend did and regretted it.

I know you have a lot of troubles at present and do appreciate the time you take to think of others.

Sue. :friends:

Don't plan too far ahead and you will be fine. We all mean to take life slower so it helps if we keep that in mind - stroker and non-stroker alike.

Good luck with the new job. And just keep going , if they have faith in you from your previous track record you will be okay.

Sue.

Bizarre that I should land here tonight and this was the first thing I read. We have just come from a "Xmas in July" dinner. These are very popular in Australia as we usually have around 100 degrees for our Christmas Day so have seafood, cold meats and salad.

Tonight we had spiced ham and baked veg, and Christmas pud and brandied custard. Our Lions Club singing group sang some Christmas songs with funny words and we all took gifts which will go to kids in the Childrens ward at the local hospital.

When we came out it was blowing a gale, the wind was howling and the sound of the breakers ( we meet at a Surf lifesaving clubhouse) was deafening. The driving rain was so cold it could easily have been snow stinging our cheeks.

So why is it Christmas at your house?

Sue.

As a Postscript

Today we went to Craft group and celebrated Rene's birthday, she was 99 today. A couple of her friends from days gone by came and one lady said to me: "Look at all the new ladies, isn't it lovely to see them here. I wish I was still here."

And she is right, they are a lot of lovely women. I just need to give myself time to get to know them better. I guess it is all in how you look at things. My time frame is just going to have to be more flexible. I am sure as we get to know and trust each other, there will be some among them that will become friends. It is not a swift process.

Sue.

My Dad died at 86 and I had him here the last four months of his life. I then continued to have Mum live here as with Alzheimers she couldn't go back home alone. This was all after Ray's major strokes.

I agree that fathers are very precious, even distant ones. And we ought to do as much as we can for them while we have health and energy to do so.

Thanks for that reminder and I'll put you both in my prayers as you grieve.

Sue.

Glad you had a great day. I was born in England , and on my birthday in June we always had a picnic, rain and sleet never stopped us. Just kidding. On our two visits in 1994 and 1998 we had some lovely weather, as well as some rain to make the flowers grow.

Ray had a few choking episodes after the last stroke and we persevered and he eats almost normal food. The meat has to be cut up fine but I usually show it to him first so he can see what it once looked like. We also order precut, or soft foods when we go out to eat.

I loved your comment about the kids not staring, we have young grandsons of a friend of ours who tell people when we are out together: "Look out, Uncle Ray has a sore leg and you are in his way." they really do mean well even if it does get us some stares sometimes.

Sue.

Adults have the same emotional problems as teens do but try harder not to show it. Money is a very emotional issue as it determines how we all live. You may find that with two families to support on a disability payment there is not as much to go around and that you do have to go back to the local school or make other economies in the household budget.

Your Dad's health I should think is the first priority. Then the welfare of the families. Your Mum could go to the local courthouse and speak to someone there to find out where she stands with future payments and Centrelink could give her some help too. It is true that a stroke doesn't just affect one part of your life, it affects relationships, lifestyle and so many aspects of just day-to-day living.

Is there someone else you could turn to for advice, like a school counsellor, or someone at your local neighbourhood centre? At the hospital there are social workers who deal with stroke patients and their families all the time. And as a family member you would be entitle to their help in interpreting just what is going on with medical matters right now.

You really are so supportive of your Mum. There is another virtual hug coming your way. :friends:

Sue.

Tess, If I had long enough arms I would hug you from here. You are right to be mad about a lot of things, this is not what you want to face at this time of your life. You want to be carefree and ready to go out and about just like a lot of your friends are, not hanging around the hospital. My son was fifteen when Ray had his first stroke and I guess felt the same way.

I too wanted to collapse in a heap when Ray had his major strokes, and he was not as long in a coma as your Dad has been. It is really scarey when these major traumas happen in your life and none of us are prepared for them.

Just hang in there and take everything a day at a time. I know that is a lot easier said than done but it is what we all had to do. I am not going to say it will get better, how the heck would I know? But you will be able to bear whatever lies ahead. Time heals, your heart, your soul, your life. Just hang in there.

Sue. :friends:

You are so right Sarah. Wrong time, wrong place. See you in the coffee shop soon.

Sue.

Congratulations! You have just become a Domestic Engineer. This is what some people call their housekeeper/homemaker role/job here.

A Domestic Engineer is worth his/her weight in gold. Now think of all the new skills you will have time to learn. And you will be able to start right at the bottom, without any expectation or pressure and surprise everyone with what you can do.

Never underestimate the power of a brain cell to regenerate when you least expect it either. You have many good years ahead of you yet.

Sue.

Yep, good for both of you. I have done the human walking cane with Ray too, we can do it but it is very tiring. But sometimes Ray too is determined he will go some of the way the others are going, particularly on the coach trips. And I welcome those times he shows he is willing to give it a go.

I think you will find things are better when Patrick has more confidence and he will be more likely to try something new when he has tried out a few of the old trials as a confidence booster.

Sue.

Hi Tess

Glad there has been some progress, the swelling will go down gradually and then you will see what you Dad is going to be like.

It is hard to be young and full of life surrounded by people who are close to death. All you really have to do is appreciate that they are seriously ill and need the peace and quiet to get better. Maybe as you go to the hospital more often you will find that you can relax more. It is a bit like sitting in a garden. You can let the quiet thoughtful side of you out.

Looking forward to hearing more as your Dad progresses. :cheer: :cheer:

Sue. :friends:

PS you have to approve the comments if you want others to see them. Otherwise you will be the only one they are visible to.

:friends:

Sue.

Chris, tell Trev "no big deal" about changing pads etc. A lot of us caregivers do it and it is just part of getting dressed after a while and much better than cleaning up after an "accident".

It is good that he doesn't regret the decisions he has made in the past as Ray does and I think that has thrown a shadow over his past. It is better to live life forward rather than backwards.

Although you will find constant care very draining, well I do anyway, after a while it will be just another phase of your long life together. We will be here for you to vent to, and share your ups and downs with.

Give him a hug from your buddies here when you go to see him. :friends:

Sue.

Mel, both survivors and caregivers fall into the "poor me" syndrome sometimes. I had an attack of that this morning and got out in the sun for a while, that seems to help. Then I took Ray down to the lake about ten minutes drive from where we live. We sat there in the winter sun looking at the view before walking for a while with me pushing his wheelchair. Keeping busy helps and so does exercise.

A lot of us do come here for support because friends, particularly those who still work full-time, don't have time for us now in their busy lives. We build a different kind of life, like you I do hand crafts, in my case knitting, crochetting, beading. I play on the computer while Ray has an afternoon nap, sometimes get out in the garden or take a short walk. At night I phone older, already retired friends, read, watch tv, come back to the computer. It is as if a stroke shrinks your world.

I'm sure missing your daughter had something to do with how you felt when you posted this. Hope now she is home you feel much brighter.

Sue.

Hi Margaret(MM)

Good to see you posting again. It is a while since I've see you in chat too. I miss some of the used-to-be-regulars. Drop by to chat if you have some time free and see me on.

Hope summer is going well for you, down in Australia I am trying to survive winter, not cold today but on some of the rainy and overcast days have been very miserable.

Sue.

I agree with Asha. I would go over and over what we could have done to prevent Ray from having the strokes in 1999. But blaming him and blaming myself only hindered acceptance. In the end we just have to deal with the problem in front of us to the best of our ability.

Mind you I still have the same problem every time things change now. Guess I just have to battle my way through every crisis. Sometimes, like you, I feel as if it would be easier if I could just go with the flow.

Sue. :friends:

Kristen I know this is different but pretend the people you meet are just like me and Jean and a few others from here and you are just explaining some of the stuff you do in chat. People in real time and people here are just the same kinds of people, it is just the same words but said out loud.

Good luck with your first day at work, I will be thinking of you.

Sue.

Alexander and Pamela arrived home late this afternoon.

Alexander was 20" (49cms)long at birth and weighed 7lb 2oz (3270grams) at birth.

He was named after Pamela's grandfather and my Dad. What a lovely ending to June. I am so glad it is over and he arrived safely.

Now let's get back to normal, whatever that is.

Sue.

Barbara

Congratulations on your first blog.

Thanks for telling us Eddie's story. We all are concerned with our health now and all information is useful.

Hope Eddie continues back to good health.

Sue.

Hey Sherri, I think you are beautiful too. And that's no secret. :wub2:

I am a Granma again this morning and I am sooo excited.

I love everyone today. :wub2:

Yeah.

Sue. :cheer: :cheer: :cheer:

:cheer: :cheer: :cheer:

Yes to all of the above. I remember when that happened to us. Not a nice feeling and you did well not to let it take you over.

Hope it turns out a much better job than the last one.

Sue. :friends:

Yes, Phyllis, do keep on trying. I look forward to your blogs and postings. My favourite is still the one about having to go out to eat and getting paid for it. And I really would miss you if you take leave. Too many of our regular bloggers drop out and don't come back so please don't be one of them.

Sue.