swilkinson

We went and picked up the ultrasounds today, and will take them to the doctor next week along with the results of the blood tests Ray is to have tomorrow and see where the doctor thinks we should go from there.

I am beginning to think stroke, diabetes and dementia is going to be a hard combination to accomodate in our lives. I am not looking cheerfully at the future at the moment. It is a bit of a downer to constantly be reminded that things are going to get worse not better.

We only have to live one day at a time though so I will do my best to spend each day with Ray as cheerfully as I can manage.

Thanks to all who keep us in their thoughts, I know a few of you do, so thanks, I do appreciate it.

Sue.

Phyllis, some people do feel a change in atmospheric pressure, my Mum could always feel a storm coming because it made her feel headachey. It is something to do with the inner ear which can also make you feel off balance. Her solution was lying in a dark room with the blinds drawn and a cool cloth on her forehead and an aspirin or two if the feeling didn't go away.

Get as much rest as you can and try to catch up on that energy loss. We need you to stay well and come back here often.

When we lived at Narrandera out in the west of our state we had one hot summer when the temp didn't go below 100 degrees day OR night for ten whole days. Most of us felt like a wind up doll after a couple of days of it and many older people finished up in hospital with heat exhaustion. I felt the heat that year and I was nearly 25 years younger then. So just spend as much time as you can in the a/c, drink plenty of fluids and take it easy. :beer: And try not to drive in a thunderstorm if you can possibly get out of it.

Sue.

Jean, in countries without the medical facilities we in the western or "first world" countries have most people do still die not that long after a stroke, though I guess those who have good family care last the longest.

When I was a girl my next door neighbour had a stroke and took to his bed (against medical advice) and died 18 months later, probably of inactivity. A lot of stroke survivors were wheelchair bound before the excellent rehabilitation we take for granted these days became availabe outside of major city hospitals.

Think back to you own childhood and see if you can remember relatives or family friends who died of what we today would consider a minor complaint. And think of the kids who had polio, or grandmothers who were bed-ridden with "bad hearts".

Makes you count your blessings I guess.

Sue.

Good and bad days seem to be the lot of the caregiver. You achieve something or your survivor does and you feel soooo good, and then something comes along and overshadows it. Hang on to the good, picture Trev doing more because of the new improvement in his arm.

Tell you neighbour:"Sorry", and tell her/him about Trev's improvement, maybe they will feel good too. A trouble shared is a trouble halved, a joy shared is a joy doubled, my Mum used to say that.

The extra time Trev has spent away from home will be a blessing in the end. Just hang in there.

Sue.

Kim, I am so sorry to hear you are going through all this right now. I also had a sick husband and ill parents at the same time and know how fragmented you feel.

Just give yourself some time to meditate, or just to day dream. I will lend you my beach meditation to put you to sleep of a night.

You are walking down some wooden steps, at the bottom is some pale yellow sand. Move your eyes slowly from the sand and at about waist height you will begins to see bluey-green waves breaking. Let your eyes wander out to a sea that is as blue as a blue wrens feathers. Add palm trees, rocks etc as appropriate.

Honestly you need to relax. Praying is good but worrying is bad for you. I will pray with you too. Hope things begin to go better for you all soon.

Sue.

Ellen, Ray would start jobs after his first stroke in 1990 and I would finish up completing them. Now I wish he could just initiate anything!

I hope you have a wonderful holiday. I look back on some of the trips we have done and am thankful for the memories Ray and I have and for the chance to see so much of Australia. I know you will feel as passionate about your exploration of your own country.

We are big fans of Chinese food too, so if Ray had aphasia I am sure that would be one of the words he would attempt too.

Sue.

Mary, a lot of your thoughts have been my thoughts too since Ray had the strokes. Thoughts about finances, working, that floundering feeling, I think we have all that in common. Even those survivors and caregivers who seem most confident have the sleepless nights.

Once stroke happens life is changed. And we are left to try to turn those changes to our advantage.

Good talking to you too.

Sue.

Welcome from me too. It is not easy to put into words what you feel about the stroke event but once you do it is amazing how the words flow! I find blogging a way of sorting out what I feel about what happens to me as a caregiver and to Ray as a survivor.

It can be a mixed blessing, putting our thoughts out for everyone to see as others have an opinion about what we should have done too. In the end it is what you think about what happened to you that is important and the action you take because of that.

As Jean said: looking forward to getting to know you better.

Sue.

Phyllis, I have a friend also in the merchandising business who's phone calls sound much like your blog. She had to build a six foot high cardboard waterfall and then stack her product in tiers beside it. Her description of it had me laughing but her crying!

Don't do more than enough to keep you going, you can't afford to get too tired and let your health suffer. I am so glad you have the intention to have a sleep-in weekend, you'll feel better for it.

Good luck with it all.

Sue.

Take plenty of baby wipes on your trip, baiting fishing hooks is a really messy business. Hope you are good at scaling fish too.

I'm glad to hear Denny is now speaking in full sentences. Ray is not much of a conversationalist now. He doesn't have aphasia but maybe what is said doesn't trigger an answer in him. Sometimes I push real hard to get an answer but he gets more silent if I do that. I guess you have both to want to talk and have something to say.

Keep working on those plans to travel, life on the move can be the best time of your life. Enjoy.

Sue.

The roller coaster is not going to crash. It is an enclosed system. So the ups and down just smooth out from now on.

Congratulations on all your achievements. I envy a few things on your list. I have NEVER caught a barracuda or cruised to Hawaii. But I can share your enthusiasm for both. Good for you.

Sue.

Just looked at the photos you posted in the Gallery Mel, nice ones of your brother too. I just think your house would fit anywhere in our street. And I am sure you would make a good neighbour. You've got the beginings of a good garden there. I have daylilies up the back, mine are orange and yellow.

Sue. : :friends:

Kristen (((((hugs))) :friends: it is a big disappointment when life trips us up with yet another "little medical problem" as my doctor calls them.

With all the new medication SURELY something could be done to keep seizures at bay? Or does that mean returning to the zombie state? Maybe, like Ray, what would suit one of Patrick's coditions would clash with the available medication?

Anyway, I'm thinking of you both. And will try to have a chat with you soon. :chat:

Sue.

Kristen

Sounds like you are doing fine in your new surroundings. And the getting lost thing is something that happens to us all.

Hope the stroke group works for Patrick. We all need to find kindred sprirts and as you know they come along when we least expect it.

Brandon already has girls that ring him DAILY? he must be a "chick magnet".

Hope you enjoyed your day out. Catch you soon.

Sue.

Go for it. Life is too short not to have what you want. But remember to make it so you can have what you need as you age.

We fortunately have a house that is on one level and have had a ramp put in to the back door. I'd still like an ensuite bathroom but don't know how to do that cheap enough.

Remember that building a new house is stressful though and prepare for lots of delays and disappointments.

Good luck with it all.

Sue.

Hey Vix! Where's your poker face? Smile through those tears and all will be forgiven.

Hope all was right this afternoon. Think of a summer on the beach and smile.

Sue.

Hey Cindy!

We are all different, some rely on God, some get comfort from their dogs, their family, a few good friends. Some are vocal and voracious bloggers, some are just quietly supportive.

Like you I am sometimes worried about the effect something I write in my bog will stir up in the Strokenet community and have had some really off-the-wall replies sometimes. But I do like to see someone with a different view to mine as long as it is not derisive, offensive or out-to-get a particular section of our community. Abusive comments are not warranted here. After all we are a SUPPORT group.

Keep on blogging! It helps with the stress levels.

Sue. :friends:

:happybday: You bet! hope it's the best year yet!

Congratulations Chris and Kim, another milestones passed, another year of struggle ahead. But there are plenty of people here to cheer you on. :cheer: :cheer: :cheer:

And make the most of any movement. It is that determination that in the end pays off. Tell him not to give up. You really are the best Chris.

Sue. :friends:

I want to add to what Asha said. Fate is always out to get you!

Ray has had five strokes so I wish we could turn back the hands of time till before the first one. But with my luck fifteen years ago I would have been run over by a big red bus!! :death:

Sue.

Cindy, having my hair done used to put me in a good mood too. Haven't had it done for a while except what I do at home but I'll keep it in mind and use it if I get another attack of the blahs.

Lawyers always take their own sweet time, so you just have to be pateint.

Sue.

Nice to see you blogging again Kim.

I would fight to make days not like the day before. I know Chris is not as mobile as Ray so we have more opportunity to go out but I have strived for a routine so Ray knows that on Monday we do this, Tuesday we do that. In your case maybe Monday could be icecream for dessert etc. If there are different walks to do, Tuesday could be the day we go past the park. Wednesday might be Macca's lunch. Maybe this doesn't apply in your world but it does in mine.

Because of Ray's various conditions our world will soon shrink back again. It is hard to see that happen but the example of people like you and Chris shows me that other people cope with that and I can too.

Go on working to make life better for both of you.

Sue. :friends:

We had a few American river boat captains in Australia, came from the gold fields there, to the gold fields here in the 1850's and finished up pilotting boats on the Mighty Murray - Darling River system.

Hope they had Abe Lincoln's device with them as the sandbars changed overnight as the Murray rose to great heights after floods and fell again.

Thanks for the history lesson.

Sue.

Hang in there Chris. Bureaucrats are so slow because there is no timeline for them to have to perform to. I was a public ( civil) servant and the letter from the MP , called a "ministerial" meant you had 48 hours to complete the case. That usually meant someone further up the line had had it on his/her desk too long!

We are all so looking forward to you having Trev home with you again. I only did the daily trip to see Ray for three months and that was long enough. Mind you his homecoming and living with the routine of appointments, PT etc will bring it's own frustrations to both of you. But we'll be here to support you through the frustrations.

Sue.

As I have done some work with the dying as part of my Clinical Pastoral Care I would say that a lot of people feel like Craig. Unfortunately when whoever is in charge of us at the time calls in the paramedics we are not usually able to make the choice, it is made for us. Then the choice is not whether we go onto life support but when we come off. And left to a family there will always be some for and some against the decision.

So make your wishes known. Discuss whether or not to use pain killers, feeding tubes, chemotherapy, drug regimens. Tell your family exactly where you stand on options such as further rehabilitation, organ transplants, artificial hearts etc. Discuss nursing home care v palliative care.

In my experience the wishes of the patient are seldom followed once they get hospitalized as those who surround them often think they instinctively "know" what dear old Mum or Dad would have wanted. And the medical staff is out to "save" the patient.

And Phyllis a lot of the last three months for me would be spent with my family unless I thought doing so would distress them too much.

Sue.

And Denny is right! The sooner you are out on the road the sooner you will have your confidence up. I guess you will need a mechanical check done on it before you take off though.

We had a campervan for years, sadly it got too expensive to drive and needed a lot of mechanical work done so we sold it. I sure do miss it.

Have heaps of fun on your trip. Are you taking the bikes too? That would be so cool. And good exercise too after all that sitting.

Sue.