swilkinson

Ken

Ray and I had an "I wish" session today. He wishes he had been able to get his driving licence back, if only for a little while. I wish he'd had just the one stroke and not the additional ones. But we both agreed that the way to go is to make the most of what you have and enjoy each day as it come along.

Our Apex 40 Club is holding "Ray's picnic" on Monday on the Tuggerah Lake foreshore, this is the second picnic as we had one in January too. Ray gets a big kick about having a day named after him. I guess all kinds of good things can come out of the bad events in our lives if we just keep on keeping on.

Sue.

And Happy Easter to you too.

Sandy, I just said to Vicky Moran I don't intend the blogs to be sad. To me they are just a window into my world. Most are caused by a recollection of something from the past. It is about how I feel about what happened then.

My family grew up in areas where life was structured for the masses not to move above their station in life. My Mum was told by her step-mother :"I know my place, and you should too. Don't climb above your station in life , you will only get hurt."

You would have thought that the second world war finished this feudal stuff off but I think it was late fifties before England totally recovered and by then we were here in Australia. That was a freeing experieince for Dad personally but he and Mum still brought us up to what had been their parents values I think.

It is a world as you say of many pernmutations, each one appearing normal to the persons whose lives it affects.

Sue.

Put me on the list of people who would like their husbands to help in the decision making. Ray has no opinions, no preferences, cannot make a choice, rarely vioces a view. I don't know whether it is damage from the last stroke or whether it is the vascular dementia. :juggle:

Maybe this is the part of life where you have to "be your own best friend". That means among other things taking your own advice. So work out what needs doing and tell yourself you have the strength and ability to do it and go ahead and do it. :cheer:

We are here as back-up if you want and second, third, fourth opinion.

Sue. :chat:

Hey Sandy, as you said the bag is old and frayed and it is time I pitched that "helper's kit" out. Most of the contents have gone way past the use by date.

Okay, so now that I am not a helper how can I stop helping? Is there a local chapter of "Ex-helper's Anonymous" for that?

Sue. :bookread:

19th April 2006 will be the 7th anniversary of the first of Ray's two major strokes, the day that "retired" us both. It is funny that even though he has had five strokes that is the day I think of as being his stroke anniversary.

Ray doesn't think like that at all, he is a day-by-day person so yesterday is over, tomorrow is yet to come, today is the day he lives in. So today is Monday and he has gone to Daycare, I should be up and doing too.

Be thinking of you on 19th AJ.

Sue.

Pam, sometimes we've got to take a step back to see things in perspective, and that is difficult with a new relationship.

You, like me, are a bit of a rescuer, sometimes we've just got to let people learn from their own mistakes, however painful that may be.

After all they can ask for help if they need to and we'll still be on standby with our "helper's kit".

Sue.

Hi Amy

I have a son in the funeral business so have just been talking plots. Of course Ray and I are older than you (63 and 58) but I am going to be buried if we are close by, cremated and ashes buried here if I am far away. I also like the family plot idea but will settle for just be buried in the same cemetry as my parents.

Sue.

Hey Pam

Resolving the past is somewhere in there, you can't drop it and move on, vestiges of the past trail along behind. There is an acceptance that has to come before moving on and after moving on.

We just disposed of some furniture and I am reading endless piles of paperwork, sorting, sorting, throw this out, keep that. I know that some of what I throw away will be needed later and some of what I keep I will later throw away. Maybe I need that "self-appointed guardian of all truth" to sit at my left elbow and help with the job?

Sue.

Kim , sweetie, it is hard to make big changes in your life. You will be homesick for about twelve months and then slowly forget. I think it is a balancing act choosing either being with your birth family, or being with your new family.

Hope you feel better soon.

Sue.

Hi AJ

I know what it feels like to be constantly restating what disabilities Ray has and am glad it is me and not him who has to do it. I think he would feel exactly as you do"boys don't cry", "just get on with it","don't be a weakling" were all mantras he grew up on. So his response to doctors, health workers etc is "I'm fine thanks". Just as well I am sitting right there next to him and can state REALITY.

One of my mantras since Ray's strokes is "LIFE IS" because on any given day it is whatever I say it is. It can be good to others, bad to me. It is my REALITY. So don't ever be ashamed of your feelings , they are your "LIFE IS".

Sue.

Vicky

Ray does his "own" exercises too, they are a cut down version of what he is supposed to do. I nag him because I want him to do the lot as set out by the physio therapist but something is better than nothing.

I guess you get a lot of exercise working and running a household but sometimes the formal exercises are more specific at targetting certain muscle groups.

I like the balancing on one leg exercise, now if you coud just learn to meditated at the same time....lol

Sue.

Kim, you are so right , it is all about perception.

We once lived in a town with a somewhat troubled reputation. A lot of the kids from the local school came to play in our yard. One of the "up town" people said: "Some of the worse kids in this town play in your yard." I said: "No they don't. The kids who come to my place are the loveliest kids around." and they were while they were there.

No matter where you live there will be people who love you and do everything in their power to help you and some who will not. Be friendly to all, in your new job that is what will keep the customers coming back.

Hope you find a lot of happiness in your new situation.

Sue.

Susan and Rolly

Congratulations on surviving another year together, because the stroke applied to both of you. On April 19th it will be seven years since Ray had his second stroke, followed a month later by his third. I thought life as we knew it had ended and in some aspects it had. BUT we are still here, still together.

Big hugs for both of you from Ray and Sue.

Fred, your blog inspired us and I took Ray to the movies and saw "The world's fastest Indian" about a guy in New Zealand who rebuilt an old ex-army Indian motorcycle and raced it in Speed Week in Bonnevile Utah in 1967 and broke a land speed record.

I will try to take Ray to a morning movie once a month and then out to lunch afterwards, it will be our latest 'treat'.

Thanks for the thought, Sue.

Yes, mourning the past is normal, thinking what mght have been is normal. And the ignoracne of the general public to strokes is normal too.

Only advice I can give is hold on to the good things in life as hard as you can, the music of your life may be playing the darker notes at the moment but soonn the lighter notes will come tripping through again.

You and Patrick have now what people only "hope" to have when they are old, some time to spend in each others company. Enjoy it while you have it and worry about the future when you're further down the track. You got a whole lot of living to do first.

Sue.

Sandy, after dealing with some of this frustration I guess I am more cynical that I used to be. My natural optimism usually shows up sooner or later. I am going to see if I can join a carer's group that was formed for people who live with someone with a mental illness but has been widened to include those who live with anyone who neeeds long term care. There is ONE I know of for about the 3,000 people who need it, so I'll stand in line.

Jean, yes, sometimes I feel I'll just put it all down here. I do it for myself but also for others who I know feel the same frustration but are unable to express it. Besides, those who don't like it can just read the happy ones can't they?

Went to the site and read some of the words. Seems to me she must have been a hurt child at some time in the past.

We all find our meaning somewhere and there are always songs to give words to the inexpresible.

Sue.

Sandy and Lynn, I am somewhat of an expert on assisted living and believe me you don't even want to go there. Some of the staff in some of those places would make Attila look like a honey.

Seriously, I think money can be quite a cushion and that people who are better off get better care. So save for that rainy day when you are old, widowed and in some cases friendless. Sandy, I have never worked in an industry where women got paid as well as you seem to, most of my dealings have been in the lower income level where the good things in life had to be saved for.

Like Vicky, when I first worked full-time I did the work at home as well. There were no choices, no cheap labour, no subsidised childcare, no tax breaks and a woman was expected to work inside and outside the home. I guess in a way that makes caregiving easier as I am used to long hours.

Mind you I would hesitate to spoil a man as Kim says she does. I look at Ray and see the results of that. He did the outside work, I did the inside work, now I do both. None of what he is capable of doing appeals to him and so he doesn't think of taking on even chores he could do.

I think if I continue on here it will turn into something I should have blogged about. Sorry.

Sue.

I think the unmarried but committed couple can be a very satisfactory relationship for two older people but unless it is explained and accepted by their family and friends difficult for those who are "signficant others".We don't on the whole live in isoloation but in a network of relationships so for those who can't work out what exactly their relationship to this new person in the family is there is some conflict.

I remember a friend of Mum's whose middle aged son had a live-in ladyfriend. Mrs *S* had some problems with this, especially as he wasn't divorced so technically she still had a daughter-in-law, the mother of her much loved grandchildren. After some consideration she said to my mum: "I have decided. I will refer to Carol as *D*'s concubine." It didn't go well with the lady in question but I guess it was the correct terminology.

Sue.

Fred and all, thank you for your comments.

These people I met for the first time on Sunday are not "new friends" they may be in the future but at the moment they are people who have said "hello" once. Not one of them will ring and invite us to dinner, or offer to mind Ray while I do something in an emergency. Our friendships of 23 years can not be so easily replaced.

Think back to the last time you moved from house to house and remember how long it was before the new place felt like home, before the next door neighbours became someone you could rely on. That is how long this will take.

It was good that a couple of people said hello and I am grateful for that, but it will be a long time before what we had as a little church family at our old church is replaced by something equally familiar. As with stroke recovery it will take time and working at it to make us feel confident again.

Sue.

Yes, we are thankful to have interests to keep us going too. Had our grand daughter and three lots of visitors on Sunday. Ray is at Daycare today having a picnic in the Japanese gardens. He wil be real tired tonight.

No Lions for us so we must have our meetings same week as yours. But Ray will get more sleep now the Commonwealth Games broadcasts are over. He just enjoyed the variety of sports so much.

Hope you have a good week.

Sue.

Denny...is that REALLY YOU?

Sue.

I'm not partial one way or another but "fake ID's" are a problem where ever you encounter them.

If someone leaves and comes back it's probably more appropriate to let others who are new to the site know that you were once here and then left and have come "home".

So Stan and Kim, welcome home.

Sue.

Fred, sounds like you live in a real big neighbourhood there.

I just love your positive spin on life. We just bought a small car that I can lift the wheelchair in sideways, makes a big difference to my back. Ray can slide in and out of it easy too.

We have too few concessions for disabled people hereabouts but politicians here still need to seek the money to look out for the disabled and their caregivers. We just got a new politician so I might just pay him a visit and see what his policies are.

Keep up your work in encouraging the newbies, you are doing a great job.

Sue.

Ray get critical when he is tired. Often makes faces rather than comments about food he doesn't like and pushes it around his plate.

We eat at our local club bistro rather than restuarants as I can adjust the portions to how he likes it. Man oh man, I wish he just had a good healthy appetite again.

Sue.