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Post by onlyMark on Nov 3, 2018 13:53:55 GMT
Mich, you are so coherent in your writings that’s it’s always a shock when you remind us of your brain injury! There’s not a clue in your writing, ever. Ditto, Mich. A big strong agreement with that sentence.
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Post by mich64 on Nov 3, 2018 16:05:06 GMT
Thank you Mick, Kimby and Mark for the supportive words. The one difference that has helped me socially was when I regained my facial expressions, smiling and nodding my head gives me the appearance of joining in socially, but sometimes I am smiling when I should not be. My one friend is really sensitive to ensuring I understand in group situations and will usually tell me "she did not mean that literally" so I can change my expression from shock to a smile or also the reverse.
My family will also wink at me when they see that I did not understand a joke or a sarcastic remark. My sister rearranged place cards at our table at a wedding this past summer as she knew it would be difficult for me the way it was arranged, I found out afterwards that she had done that and I was grateful. But, this is why I am concerned what is going to happen as I age and will I have these supportive people to assist me always?
Kimby I have thought of getting a letter from the doctor explaining my disability especially for when I am in airports. I can be drenched in sweat by the time I pass security and customs due to the anxiety of having to speak and answer questions but I am also determined to keep on with my love of travel.
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Post by Kimby on Nov 3, 2018 16:10:40 GMT
A letter is a great idea for airport security. I suggested the button for everyday situations, like being in a checkout line at the supermarket. It’s tedious and painful, and unnecessary, to have to explain your situation over and over. With a button on your coat, you could just point to it and smile.
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Post by mich64 on Nov 3, 2018 16:36:53 GMT
It is extremely rare that I am ever without my husband, he handles the checkout and talking to the ladies at the deli, which is where I will panic. When I say a number such as 200 grams, I say 2 0 0, single digits because that is what I see when I think of numbers. My brain will allow me to read the words two hundred, but to speak it, it will always come out as 2 0 0. It gets really complicated when I have to say large numbers they come out as 1 9 6 4 as an example when I am asked what year I was born. You would be surprised how many times numbers come up in conversation!
While I completely understand how wearing a button would simplify many daily situations and it is a very practical solution, I am sensitive (but also extremely proud of my progress!) and actually shy away from people/strangers.
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Post by mickthecactus on Nov 3, 2018 17:32:23 GMT
Dear Mich,
How I would love to meet you one day.
You amaze me.
Mick x
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Post by mich64 on Nov 3, 2018 18:00:02 GMT
I would love to meet you one day as well Mick!
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Post by lugg on Nov 3, 2018 19:02:25 GMT
Thanks Bixa and others who have posted about their thoughts / experiences -early days but we did start the ball rolling last weekend and she has agreed to a lifeline .... but for now but pretty much refused everything else. I am really not sure if social activities would help as she has always been so home orientated but I am also guessing that she is lonely a lot of the time.
Mich completely agree with other posts - you amaze me too - the brain is such a complex thing isn't it and reading about your experiences in learning to overcome the impact is inspiring
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Post by Kimby on Nov 3, 2018 20:52:04 GMT
Is a “lifeline” the “I’ve fallen and I can’t get up” necklace? Within a week of getting one for Mr. Kimby’s mom, she fell and broke her hip, and used it to call for help. May have saved her life.
Another thing that might help your MiL is Meals on Wheels. It’s a hot meal once a day that not only ensures nutrition, but also is an opportunity to socialize a bit and have someone checking in on her most days.
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Post by questa on Nov 4, 2018 0:11:58 GMT
Mich, I did not know you had a stroke or any such problems. Your written posts here are as excellent as any of our contributors and definitely more coherent than most of mine.
Re the letter for Airports...Get one done for your general use then, if you are travelling where English is not used run the letter through a translate program so the officials get the message.
While wearing a badge may be practical it raises lots of issues. Why should we ( I have language issues as well) have to wear a label which indicates we are not "normal". The whole thrust of modern health care is to emphasise what you CAN do, not what you can't. If I am talking with someone and start forgetting everyday words (usually stress related) I just say "Uh Oh, my brain has gone into meltdown again, I have Parkinsons, you know." The listener will usually reassure me, (Take your time etc)
The big news in your post is getting your facial expressions back. I am at the stage where I am losing mine and it really makes you aware of the subtle communications those facial muscles provide. Keep exercising!
I think you are marvellous. Your ways of working around difficulties creative.
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Post by bixaorellana on Nov 4, 2018 3:53:20 GMT
I try not to worry about what happen in the future but I do worry if it will be my choice. Mich, I can only echo what others have said about it never, ever being the least bit obvious that you have had to overcome communication difficulties. I have no doubt that having come this far, you will only continue to knock down each obstacle in your path. Truly, I don't think I've ever met anyone with as much discipline and determination as you have. ... we did start the ball rolling last weekend and she has agreed to a lifeline .... but for now but pretty much refused everything else. I am really not sure if social activities would help as she has always been so home orientated but I am also guessing that she is lonely a lot of the time. Lugg, thank goodness you persevered! Certainly the acknowledgment that she needs the lifeline, if only to reassure those who care about her, is a step in the right direction. "Social activities" is a broad term, but I hope at least your mil has phone contact with kindred spirits and might decide on her own to cultivate old or new friendships.
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Post by mich64 on Nov 4, 2018 4:35:17 GMT
Lugg, that is good news that she will accept the lifeline system, like Bixa commented, it will help to reassure those who care for her and perhaps it will make her feel safer as well knowing she can signal for help. I agree with Kimby, Meals on wheels volunteers do bring more than a meal and nutrition, they help with daily routine and structure which sometimes encourages more activity. Perhaps it would be advantageous if it were available to her.
(in response to your comment, their is so much more that is unknown than known about the brain, there are always new discoveries! I have had over 12 years now to adjust/adapt and am determined to find ways to improve!)
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Post by lugg on Nov 6, 2018 19:21:54 GMT
Thank you all - some really welcome advice -just need to keep trying x
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Post by lagatta on Nov 24, 2018 15:30:55 GMT
Here is an interesting initiative; French posties checking in on elderly people living alone (or as a couple) in isolated areas www.theguardian.com/world/2018/nov/23/care-package-french-postal-workers-helping-lonely-older-people This has always happened, but it is more formalised now. In general their adult children have to pay a modest fee for this service - K2 might know more - I suppose there is some provision for elders wih no living children or they are unable to pay the fee. I love my friends and am very happy to get together with them, and am also perfectly capable of and happy to socialise in a community association I belong to and other things I'm involved in, but I am more of an introvert than an extrovert and am also happy home alone (with Livia, that is) reading - books or online, writing or drawing/painting. The weather is much milder now - around freezing point and will go up, quite bright but a bit veiled. I have to check on the house of a friend who is abroad for quite a long stay. If it is mild I'll walk there - There is still too much ice on the cycle paths for me to feel safe cycling there.
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Post by kerouac2 on Nov 24, 2018 16:09:26 GMT
Yes, with the decline in physical mail, the French Post has been looking for new ways to be useful. The service for the elderly is really quite reasonable because the basic service costs 19.90€ for one visit a week plus a written report to the family. With the government tax credit, the real cost is less than ten euros a months for anybody paying taxes in France. You can pay for as many as six visits a week (that would be 94.40 or 47.20 with the tax credits, which sounds damned cheap to me). For just a bit more, you can add one of those remote alert devices for the old person, and those work 24/7.
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Post by lagatta on Nov 24, 2018 19:19:30 GMT
It certainly seemed most reasonable to me, but people were complaining about it. Don't want to get into stereotypes about people in France complaining about everything... Postmen and postwomen must cover quite a bit of ground, and I suppose some of the old people aren't as courteous as Janine.
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Post by kerouac2 on Nov 24, 2018 20:01:20 GMT
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Post by Kimby on Nov 25, 2018 23:12:14 GMT
Mr. Kimby’s Dad ended up in nursing care when he fell 3 times in a weekend and his Mom couldn't get him up without calling 911. The third time they said he needed to be checked out, so they took him to the hospital. After 3 days, and lots of inconclusive tests, he was transferred to rehab. After 30 days in rehab, he was designated a permanent resident in nursing care. He spent the next three years gradually declining there.
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Post by questa on Nov 26, 2018 4:59:19 GMT
I helped a friend move into a retirement 'village' last week. He gets around on a Vespa but is limited walking. The place is like a hotel suite with kitchen and the residents live independent lives. When they need 'care' this is done in their suites. They have decent size sitting rooms and bedrooms and downstairs are lounge rooms, Pool tables, big kitchens, gardens etc. Friend is on 7th floor with balcony leading to magnificent views of beach, coastline and sunsets over the sea. As it is Govt subsidised he pays less than the windowless bed-sit he was in before.
I hope I can get one like this when I am unable to cope. I had an assessment last week for services organised by a Govt body. Told them I only need a hand with heavy vacuuming and turning a heavy mattress. I must admit, I'm wishing for a bit of 'looking after' nowadays.
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Post by Kimby on Nov 26, 2018 12:32:28 GMT
Sounds lovely. We should all be so fortunate in our dotage. Questa, should you restrict your activities to preserve your strength, or is it good for you to push your muscles beyond their comfort zone?
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Post by bixaorellana on Nov 26, 2018 22:39:38 GMT
Sometime it is not that easy. No, that that easy and really, immensely difficult. Even when the person with dementia is placid, the amount of care and vigilance necessary is stressful and wearying to the caregiver. I do hope your mother-in-law gets rid of any guilt she might be feeling, Whatagain. This is a situation in which she could never do anything except wear herself out. You may or may not want to give her these links. There might be more & better ones if you're searching from Europe &/or in French: www.alzheimer-europe.org/Alzheimer-Europe/Who-we-are/Our-members In this one there is a link to forums at the top far right. That might be helpful to her: www.agevillage.com/
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Post by questa on Nov 26, 2018 23:36:02 GMT
Questa, should you restrict your activities to preserve your strength, or is it good for you to push your muscles beyond their comfort zone? As a "sufferer" of "voluntary inertia" (i.e. laziness), I have to have an end result of any exercise that I do. I eschew gyms, boot camps and anything that involves action for action's sake. I don't think you can preserve strength by restricting activities, can you? (I wish!) I get a bit of exercise driving my dog to a nearby large empty park and letting her gallop around in circles at the end of a 15 metre rope while I just stand in the middle and turn. When I was working I had on my desk the maxim "Efficiency is nothing more than intelligent laziness" and I was able to instigate many changes over the years which let us do more with less effort.
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Post by Kimby on Nov 27, 2018 12:10:22 GMT
I also “suffer” from that “condition”. ;-)
But it’s the other condition I was thinking of when I asked my question about exercise....
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Post by bixaorellana on Nov 27, 2018 19:06:15 GMT
Meet Zora, the Robot CaregiverThe article is both creeping and intriguing. (And yes, I know it's a NYTimes article and yes, I know they have a paywall.)
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Post by lugg on Feb 21, 2019 19:37:57 GMT
Things have gone from bad to worse with my MIL she fell and was on floor for several days just before Xmas and then spent several weeks in hospital. She is now home with a 4 times a day care package but its not enough to keep her safe. Since she's returned home she's had a fall and cut her arm badly , she's flooded the house with gas and is now deteriorating so rapidly its frightening. Anyway this week finally got a comprehensive mental health assessment done with diagnosis coming on Tuesday. I really don't need this to know she no longer has mental capacity to make good decisions. Now just need to persuade her cockwomble of a son that he needs to act like a son. I have visited a number of care homes and now have a good idea of whats good and not good. Anyway I'm off to visit another care home tomorrow that is close to me and my daughter and fingers crossed this will be a good solution. On a positive note this has made me sort my legal will and also my living will to sort the other stuff.
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Post by kerouac2 on Feb 21, 2019 19:57:53 GMT
I think a number of us here know just how difficult this situation can be. I was really sort of lucky because my parents told me years before the need arose to not hesitate to put them in a facility when the time came "no matter what we say." I don't have the slightest idea how they came to know that this was the best advice, but I followed it, even though it was painful.
Best of luck for the future, lug.
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Post by mich64 on Feb 22, 2019 1:31:30 GMT
I hope you find the solution Lugg.
We went to town today to visit with my parents, my father called last evening to tell me that they have decided to sell their home and move into an apartment. I was concerned that this was not a joint decision and that my mother would be upset but I was surprised at how united they were.
I was given a list of things to put on line for sale, we discussed buildings they would prefer to live in, what to expect for rental payments and there reasons for their decision. I could barely sleep last night, but after talking with them today, I am relieved that this is something they both want to do. This winter has been record breaking, one of the worst we have seen in a very long time, they are both stressed with concerns of flooding and although they have hired a contractor to plow the driveway and shovel their roof off, the worrying has overwhelmed them and they admit it and do not want to go through another winter, they hope they are moved into a building where they no longer have any of those concerns. They are even willing to take an apartment when one becomes available even if there house has not sold, they have put a lot of thought into this.
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Post by Kimby on Feb 22, 2019 2:18:48 GMT
Gotta love their being proactive. And even if they didn’t say it, one benefit of moving now, instead of when they become infirm, is that it spares their kids having to deal with their home and possessions, and frees up cash for future health care needs.
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Post by mich64 on Feb 22, 2019 3:27:59 GMT
Exactly Kimby, those are actually some of the reasons we discussed today. They are also afraid of leaving each other having to do this on their own while dealing with their grief. My dad wanted to make this move 2 years ago, but we knew my mom was not ready and helped him with hiring contractors to take care of their lawns in the summer and snow removal in the winter as we knew this physical work was the issue at that point. But now they both agree that they want to settle the house and get their finances simplified.
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Post by mossie on Feb 22, 2019 17:06:54 GMT
I must admit that I am trying to cling on to my solitary independence for as long as possible, BUT I am starting to get a bit unsteady on my feet at times and don't relish the idea of falling and not being able to get up again. The crunch will come when I can no longer drive but will put that day off as long as poss, but realise that I must face up to making a responsible decision. It is not much fun getting old, but will try and have as much as I can.
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Post by kerouac2 on Feb 22, 2019 17:43:03 GMT
Well, you can start by getting one of those push button alert devices for emergencies, although I really doubt that you would need to wear it around your neck. Having it in the pocket of your trousers would already be reassuring.
And I think we can count on you to not try to take up the Prince Philip challenge on the road.
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