jriva

Hi Ann,

I find it somewhat amusing that people are shocked that the Strokenet blog world is not "safe" from the world viewing them. I have myself set up to get Google Alerts anytime my name appears on the internet and it's amazing how much the stuff I write---blogs and message board posts as well as my articles---travels around to places I didn't put them. Back eight years ago, I used to review books and one of those reviews even resurfaced this year! Anyone planning to sue their doctors or hospitals are foolish to post and blog their stories. Even using a different name doesn't help. If you know the tricks of a good search and you are determined to find someone's writing, you can find anyone.

I, personally, don't have a problem with family and friends reading my blogs, etc. I gave them all links to my blogs. I figure it can do more good than harm---help them understand Don and I better.

Jean

Sue,

I just came from Associated Content where I was reading an article written by a young mother complaining about how friends and strangers alike offer her unsolicited parenting advice. This is nothing new in our lives for people to want to "help" or give their opinions. We're just at a different place with different opinions expressed but no less annoying, in those times when we can't let it roll off ours back. Most people truly are well-meaning people who are just trying to show concern, how ever misguided or inapproperate it may be.

One thing people don't understand about putting someone in a nursing home is how it impacts the spouse's income and ability to hold on to assets so that he/she doesnt' have to live below the poverty level or loss the home they've known for many years. At least over here in the USA that's the way it is...not sure if the is true in your country.

Caregivers, in my opinion, are not living in a bubble at all. We understand what we are giving up to be a hands-on caregiver and what we'd give up if we gave that care over to an instituation. Life is not always easy or fair but we all have to make our own way in the world. Part of making our way is to appreciate the fact that 'well meaning people' usually are not being nosy or critic or judgmental. They only see themselves in us and think they would do this or that differently. The hard reality of it is that when they DO get do where we're at as caregivers they, too, will find out that it's not so black and white. Ethics, emotions, strenght of character, committment and the major life style chances all get weighted up, sometimes on a daily basis, by the caregivers.

Jean

Ann,

This is your inner voice, your mother and whoever else you might believe talking----go see a doctor about your blood pressure!!!! Having such a big difference in pressure between arms is, in itself, a symptom of something!!!!!

If you're not already doing it, get a journal to log all your calls regarding the lawsuit, and who said what to you when. It's not too late to start one now. I was one of 50 defendants in a lawsuit that dragged on just short of a decade. I know how badly they can effect people. Several of the older people envolved died from that stress---at least their kids blamed it on the lawsuit and I don't doubt it because it WAS stressful.

If Wesley Long doesn't come up with records, have the lawsuit lawyer send a letter off to them. They may suddenly be more co-operative or at the very least, you'll have documentation that they lost them. More than likely they have their own lawyer going over them before turning them over to you, so keep up the barking dog trick.

:friends: Jean

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I HATE dementia! It robs so much from so many people. When I was dealing with my dad's I often felt like I was trying to hold on to him while he was hanging over the edge of a mountain cliff. One slip on my part and we'd both go over. If you ever start feeling like that, remember that your friends like Ann and me and others have a hold of your feet and we'll pull you back up.

:friends: Jean

Diane,

I'm keeping my fingers crossed for you and your new device working.

Jean

Marty,

Glad to see you back from Florida and just as sassy as ever. Cooper our dog sends air kisses to Jake your cat.

Jean

Fred,

I'm so sorry to hear about your family losses!!! This is so sad.

Jean

Ellen,

Don and I are both excited about Denny's letter writing and activism kicking in again, too. We all need our passion projects in life to feel useful and alive and Denny's got one that is near and dear to our hearts as well.

Jean

Sue,

Traveling with someone in the beginning stages of dementia really isn't a smart thing to do. The unfamiliar surroundings and routine can be upsetting and disordinating, making it worse. What in the heck is wrong with a doctor who doesn't understand that?

Lots of people do travel with wheelchairs in tow and enjoy it but I'm like you, the extra effort for me is too much work and I won't do it. With us having no kids or grandkids to come and bail us out if something should happen to my health along the way it's a scary thought to be somewhere far from home and get stuck there. We have friends from speech class who travel with wheelchair husband's in tow but it's not for me. I let it roll off my back when the expectations of other suggest what I should and shouldn't do. You only have to please yourself and Ray, Sue. Don't let others who don't understand affect you.

Jean

Ann,

I sure understand how you feel about going to Hawaii and why you didn't tell Bill. I had a similar thing happen when two other couples asked us to go to a remote cabin in the woods in the UP. It took me two days to get it through to Don why that would be an impossible thing to do with a wheelchair bound person---outhouses, no running water, no sidewalks, not to mention the fact that the bed, without a handrail would be impossible and the cabin had steps. When I mentioned this to the other couples, of course they all said, "We'll help" but they are all our age and I can't see giving someone else a heart attack getting Don up and down the "five little steps"---that would be NO trouble. ya, sure. People just don't understand how hard it is to travel with a disability.

Maybe all those people who tell you that Bill looks so good would like to take him out for an afternoon to give you a break? I bet he wouldn't look so good if they were facted with the responsibility for a few hours.

Jean

Ann,

Thanks for the update. We were all worried.

I'm dying of curiousity. The phone call you have to make to get the ball rolling for a back up plan...who are you suppose to call?

Jean

"....why do i feel it is necessary to be so polite and sugarcoat my answers for other peoples comfort..."

Hi Kerry,

I don't think there is a caregiver in the world who won't identify with the emotions and thoughts in your poem. I personally think the answer to your question about why we are polite and sugarcoat the answers we give to people is because we instinctively know that we couldn't hold ourselves together, if we put our thoughts into actual, spoken words. We also know that it wouldn't change a thing. If we did admit it, what would it bring us? A few more "you poor dears" but in the end we still have to find the strength needed inside ourselves. Fortunately, listening to what at first is the misconceptions and compliments of others will eventually help their words to become the truth. We DO grow strong and become amazing when we get far enough out from the strokes to look back and see how far we've come.

Jean

Anne,

There is nothing worse that self-inflicted caregiver guilt and it comes on with a venegence when we get temporarily disabled ourselves. It's a scary time because, as much as we wish there would be someone else to step up to the plate, in many cases there is no one. Or at least we think there is no one because we don't like asking for help.

A few months back I blogged about this same thing when my back took me to ER. I let it go too long and it sounds like you didn't. Good luck at the doctor's office. Hang in there until you get some answers.

For me, it was a wake up call to get Don a disability friendly phone so he could at least get help, should I not be able to phone out myself. I can't tell how much more security that purchase makes me feel.

Jean

Sue,

You should let your talent show more often. Nice work and the sentiment is a twist I hadn't heard before.

Jean

You are amazing, Phyllis! You may be too short for some tasks but you sure are getting a lot of cognitive exercises out of the stuff you have to do on the job. I don't think I could work as hard as you and I'm younger.

Jean

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Sue,

Don and I have been to a couple of those grandparents' days as fill-ins for kids who didn't have any of their own. I'm sure your granddaughter was really proud to have you there. Sounds good that you can still do as much as you can with Ray in tow.

Jean

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Mary Jo,

Add my welcome and sympathies to those up above. Sorry we had to meet this way but you will find this blog community a good place you share your ups and downs.

:friends: Jean

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Ann,

Oh, gosh, that would drive me crazy listen to that bleeping all day long!! Does the thing need its battery changed or is there something else that can go wrong with them? You've just given me a reason why I need to have a ladder in the house. When we downsized, I didn't keep a single ladder because I really shouldn't be on one in the first place. But I don't have maintennance to call for stuff like this.

Loved your other blog entry about enjoying the spring. We don't have things in bloom here in Michigan but the daffodils are close. We have a cold snap coming so who knows, they may be dusted in snow by mid week.

Jean

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Aaaaaaaaahhh, blowinggggggggggggggggggggggggggggggggggggg!!!

There's isn't much to say that will help right now, so catch this hug.

:friends:

Jean

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Ditto on the welcome....I'd write more but I'm swamped with work.

Jean

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Wow, you live in a place that we once camped in about 15 years ago. On that trip we drove the entire distance around Lake Superior and still count it as one of our all-time favor trips. We've also driven the distance around Lake Michigan and Lake Erie.

Jean

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If anyone else gets beeped for a word that is innocently used, let me know. When Steve first installed the word filter I took out about 20 words. You would not believe what it changed the word 'hell' to---something like 'eternal place of damnation.'

Jean

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AJ

Down days are to be expected from time to time. Glad you've got a supportive wife who knows just how to help you when that happens.

Jean

Betty Jean,

You've read THE SECRET and you haven't added a comment on our Blogs Book Club thread about that book? One hundred lashes for you!!!!!!!

Donna,

That line is from GONE WITH THE WIND said by Scarlett O'Hara. If my memory serves me well---and I made no promises there---that line was the very last line in the movie.

Jean

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Phyllis,

I just removed the word 'screw' from the bad word filter. It's ridiculous that a word that has so many meanings is banned on this site. So if I get fired for messing with the PG-5 rated word filter, it's all your fault.

I recently sent a PM to a co-worker and I used the term 'screwed up' which of course got changed to *beeped* up which made it appear as if I said something worse than I really did.

Jean