swilkinson

Been there, done that. I can saw down tree branches, clean out drains, climb on ladders and fix gutter brackets. I think I must have become a handyman since Ray's strokes hapopened.

As Jean said I bet you sleep well!

Sue.

I hadn't thought of this before Robyn but want to add that if Jane was like my Ray she wouldn't have the energy to initiate the call. Since Ray's strokes I always dial the number and hand him the phone, he can't initiate actions like that. Mind you he would be thinking about me all the time and maybe talking about me, just couldn't ring me.

So PLEASE make a move and let her speak to you again. She might be longing for the call to come but be unable to make it happen.

Sue.

I had my Mum here with me with mild dementia, she had outbursts like Mike and the caseworker who was in charge of her respite said not to fight every little battle. So if she didn't want to shower or have her hair washed let it go till tomorrow. Choose a time when she is calm and then say:"How about a nice shower and I'll put your favourite blouse on you and get something nice for dinner?" and that did seem to work.

With a brain injury there seems to be a "wind up handle" somewhere so the more anxious, uncomfortable, unable to perform the person gets the more abusive they become. I guess without being able to run away from the situation I might do that too. One way to approach it is to prepare Mike well in advance for what is going to happen, like washing his hair, so he is ready to co-operate.Don't do anything you know might cause him to start this behaviour when your children are around. And remember Mike will have good days and bad days and in response so will you!

All caregivers think at some time that they have made a mistake in bringing the person home instead of putting them into a care facility. I know I do. And keeping them home through the ups and downs takes its toll. It is a situation I review every day. And after seven years I can say: "so far, so good".

Hang in there, you will have better days when being with Mike wipes out all other considerations.

(((hugs))) from Sue.

Trev has a casual job cleaning train carriages, he uses a carpet cleaning machine of industrial proportions to clean the carpetted floors. Last night he brought it home and spent a couple of hours this afternoon cleaning the most walked through areas of our house.

What a joy to come home to a house that smells fresh and clean. Or maybe that was just the huge fan blowing air through the house to dry the carpets out? Whatever it was it was definitely the smell of Spring!

Anyway it was a lovely thing for him to do for us and made the rest of my housework soooo much easier.

Sue.

Susan, speaking as a caregiver and not a survivor I think it is because it is such a long haul that we all get tired. There doesn't seem to be a road map for the future and I sometime suspect that what happens is obscured by what I think ought to have happened and so I don't give full credit to myself for what I do achieve so much as castigate myself for what I have not achieved.

I think this requires a different kind of thinking as the situation we are in is like a long, slow journey. On that life journey, what you do each day does not matter so much as what you do over a longer period of time. So new enterprises and new developments are not as important as finding fulfillment in what you are able to do, the reading, the work you do here, the keeping together of home and family.

There was a way of looking at the sacredness of everyday tasks that keeps me centred. It is not what you do that counts so much as doing what you do to the full extent of your ability. So the task itself is important. This eliminates a lot of the guilt, if you do a few a tasks well and then you rest from your labours. And leisure time should be just that, a way of resting, of renewing your energy for the future.

I know this all sounds like the philosophy of the medievalists and a lot of it probably is as I've studied them a good deal. But that is my answer to your "Faith Crisis".

Sue.

Diane, you are coming along fine now. Keep that confidence going. It is a long haul but oh what joy being able to walk on your own will bring. I was so happy when Ray could finally walk unassisted, it made me cry. And it is such a difference to see him stand upright, at his full height! He walks a bit erratically sometimes, but he walks. :cheer:

It is hard to wait for something to happen, we were like that with our front handrails, waited almost fifteen months for them. What we didn't know was that the entire staff (one man) had had a heart attack and there was no money to replace him. So we could only use the back door all that time.

But little by little your life will go back to a semblance of what you want it to be, just keep courage my friend.

Sue. :friends:

Now I'm going blue in the face holding my breath waiting for the details of how the weekend went!

Sue.

You will like the person you are now, from our few times in chat together I certainly do.

Sometimes in a new situation we have to put aside the old information in our brain and take on new information. Ray and I have both done this in the seven years since his major strokes. I have had to learn to do a lot of new things and he has had to learn to watch me do things badly without critising what I do.

I am glad your husband and family are supportive. Boost their efforts by giving them thanks and praise as they deserve it. You will adjust to your new "normal" or at least come to tolerate it.

Sue.

It is always best to look at the good in every day for your own peace of mind. We used to sing that song: "Count your blessings" and on a bad day that reminds me that life is "speckled with good and bad things" as you said.

I am glad you can have Mike's Mum in the house now in spite of what has happened. I have a friend who tells lies a lot, I think of that as his weakness, he wants to re-invent himself all the time, to look more important. You will be glad later that Mike still has contact with his family.

Sorry you went through all that angst with your cousin and the stolen credit card, what a hassle on what should have been a much better day. I hope today is much happier for you.

Tell Mike "Happy Birthday" from Ray and me. And give him a :friends: big hug.

Sue.

Mel

((((hugs))) from me too. You are dealing with so much, both physically and mentally that it is no wonder you are feeling overwhelmed.

I hate anniversaries of the deaths of people I love too. But it is also a time to celebrate that we are alive, and they will be alive in a way too all the time we have the breath to tell their stories.

I joined Lifeline, which is the same kind of service as the Samaritans in America, because a friend of mine committed suicide. I worked on the phones for eight years doing a six hour shift once a week. I wanted to do something to help people feel more empowered so they didn't get to feel that feeling of being lost and alone. On the night shifts in particular people were thankful just to talk and relieve their feelings of loneliness. That is what we are here for too. I hope that some of what I did helped people go on living a life that they found worthwhile.

(((hugs))) and prayers too.

Sue.

Oh , I am GREEN with envy! A glass of wine in the bush with so many animals. My memories of the bush inland when we lived south west of here are the night noises and the mad dawn chorus of birds.

Aussie animals are shy and not often seen so it is a treat when you do see them. Apart from the kangaroos on the edge of all the wheat farms of course, they can be far too plentiful.

Enjoy your weekend, post pictures in the Gallery when you come back.

Sue. :gleam:

T, I don't usually have any luck. I echo the words of an old friend of my mothers who used to say: "The good Lord lets me buy as many raffle tickets as I can afford, He just never lets me win anything."

Next week I'll probaly be back to my 5 out of eleven score again.

Sue.

Tom, it is a free competition and there is just a weekly prize of $50 drawn among the top tippers for the week. I didn't get that but at least, just for once I did get a good result.

I think as a caregiver I get disheartened by the fact that I do so few of the things I used to do that guessing the winners for just one week seemed such an achievement.

I guess I just need to get out more eh?

Sue.

PS I am now doing better than my son too. How good is that?

I don't understand what rehab Bill will be able to do? Ray is going into respite in November but there will be no therapy, they will just look after his needs. I will not be going there every day. After all the purpose of the respite is to give the caregiver a break so he/she can go on in the caregiver role.

In our hospitals we are not allowed to shower or shave the patient, even if we are the caregiver, and can only feed them "under supervision" I guess that is all about liability. It does make you wonder what life is coming to. But it does make it easier for the caregiver who can say: "I'd love to help but I am not allowed."

If Ray asked where I was when he was in hospital I used reasons like - "stuck in traffic, paying the bills, drinking extra cups of coffee ( always got a comment on that one!), answering phone calls from people who need to know how you are doing, getting the house ready so you can come home". I know it is tough but they can wait an extra hour if they have to. And being on your own is often what life is about when you are seperated by illness.

Life is tough sometimes and just taking it day-by-day gets you through. Keep on doing what you are doing Ann, but do take some time for yourself.

Sue.

Got a letter today, yet another one, asking do I want to attend a Carer's Support group? "I would love to, but what would I do with Ray? "is my reply every time.

I have been looking for a stroke support group locally but they all seem to be at a distance and meet in the afternoon, not the best time for Ray. I need one that meets locally at 10.30am.

Great you have found a group you and Rolly can attend. If you have been to another meeting post and let us know what your group is doing.

Sue.

Ann, I doubt that Bill is finding life a nightmare. He has nursing, food when he needs it and knows you are there as his support.

You need some time out so get whatever help you can for Bill and then take every second day off. Listen. This is so important, you CAN leave Bill to the care of others and relax yourself.

Yes, we all cope with illness when our suvivor is home and fall apart when we have time. I had a bad day a few weeks ago and threw myself on the bed ten minutes at a time, jumping up in between bouts of nausea to perform the usual tasks. There wasn't any other choice.

(((hugs))) Sue.

Ray and I just watched a documantary called "Survivng Katrina", all those poor people, it certainly brought it all back to us as here in Australia we saw it all unfolding on CNN.

Our government too is sometimes slow to react and not all the homes blown away in Cyclone Larry in north Queensalnd have been restored yet. Most of the talk from politicians has no-one follow it up and so it doesn't get the action it needs. But we go on believing what they say - incredible really.

Congratulations Bill on the two arm golf and hope you enjoy that trip to the Nascars. It is so good when you recover some of the skills and thrills of your pre-stroke life.

Sue.

Welcome back Debbie, good to see you back in your blog again. How about coming to chat too, plenty of newbies so we need some experienced people on to help them.

Sue.

:friends: Sorry you are hurting :friends:

Sue.

Ann, :friends: hugs from me too. It is good the investigation is finally happening and at least some time in the future you should have a cause if not a treatment. For a lot of what goes wrong there really isn't a solution anyway I find.

Give yourself a break and don't spend all your time with Bill. You need some thinking time now as you will soon be facing difficult problems regardless of the present outcomes.

Remember it is one day at a time for all of us, and thankfully the rest is in God's hands.

Hugs from your Aussie twin, Sue. :friends:

Hi gang

I'm back here at home. Had a good couple of days but my little grand daughter was sick both ends last night so I was glad to come home and leave my daughter to be the caregiver. I plan to have another trip to see them before the end of the year.

Here the carport is going up. As I type this two men are drilling holes in the roof battens and putting the roof on. The size is just right for an outdoor BBQ area and it is going to be a real asset in the summer as this part of the house will be cooler too.

Anyway, it's good to go away, it's great to be back.

Sue.

Diane, I go to visit my Mum in her dementia lodge on Monday mornings when Ray goes to Daycare. Mum is regressed back before speech now, but I was singing silly songs walking round and round the corridors with her and she was humming a little to join in. Music affects us all in some ways.

I like "Always look on the bright side of life" I think "life's a laugh and death's a joke" had summed up bits of our lives too. I had viral pneumonia and one of the nurses said to me:"I thought you were going to die on me last night." so I'm aware of what REALLY breathing means.

You are an inspiration, you know that? I hope they do feature you in a national magazine, to give people an awareness of how the human spirit can survive against great odds.

Sue. :chat:

Last time we painted Ray got to choose the kitchen paint, came home on the day it was painted and said: "No. no no." Luckily the painters were still here. So they cut the paint color 50/50 with white, repainted it,"yes" it was okay. I think it is a post-stroke thing, perseption and reality are a little askew.

Glad you are getting excited about the changes to your new house.

Sue.

For Ray and I going to a Lions Club BBQ is about getting together with people we like. Ray has been in our Club for many years so others know he would help if he could. Doesn't stop them from teasing him occasionally about sitting down! But as the workers take a break they take it next to him and keep him talking and so part of the Club.

Our Big Brekkie in the Park comes up next month as we will both be there enjoying the spring weather I hope.

Keep your spirits up and the rest will follow.

Sue.

Linda, two years is a good anniversary because by then you are usually stable and in good health. Congratulations.

Have you been able to take up any of your old activities in the last twelve months? If you have could you do a post on that as the newbies need to know that there is hope ahead as they deal with the horrible first year.

Nice to see you back on again.

Sue.