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Post by bixaorellana on Apr 28, 2022 1:07:18 GMT
So very, very sorry to hear about these cruel diagnoses for your sister, Mick, and your mother, Mich.
Even without being terribly close, I know it must shock you to see a sibling go downhill like that, Mick.
Mich, you are so good to see the saving grace in the lifting of restrictions at least. All of the news you've given us of your family in the past two years has been so sad and hard to bear.
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Post by onlyMark on Apr 28, 2022 5:13:29 GMT
I see her about half a dozen times a year but even so it has come as a shock at how quickly it has come on. It took a couple of years for my father to go from his normal self to having the full blown symptoms but different with my brother who, because of the alcohol abuse, developed all the signs in less than a couple of months. I have no real idea but I suppose with dementia there is no set time and varies from person to person as to how quickly or slowly it becomes apparent.
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Post by lugg on May 1, 2022 19:47:54 GMT
So sorry to read that Mick and Mich ; its a cruel disease for sure.
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Post by cheerypeabrain on May 1, 2022 20:02:52 GMT
Sorry to hear about your loved ones Mick and Mich. xxx
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Post by mossie on May 4, 2022 18:46:01 GMT
It is a horrible thing to have because the person is taken away long before they die and become a different being. My wife went with it very gradually, but she was extremely placid and did not make a fuss. My Polish pilot also died from it and I have the terrible memory pf my last visit to him when he came at me with his hands like claws, growling like an animal. When I left I sat in my car and cried for the first time since I was a child.
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Post by mickthecactus on May 4, 2022 19:05:10 GMT
Gosh, that must have been terrible mossie,
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Post by kerouac2 on May 4, 2022 19:18:36 GMT
There is an infinite variety of reactions.
My mother once told me "I know you don't want to take me in, but you can just leave me on the street. Someone will come to take care of me." (She was already well taken care of in the nursing home at that time, which she called "the prison.")
It was easier to face when she stopped talking.
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Post by lugg on May 4, 2022 20:12:04 GMT
Awful for you Mossie and K2
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Post by mich64 on May 4, 2022 22:40:56 GMT
I can not imagine how difficult that must have been Mossie, sorry for you both.
My mom is talking less and less but she seems calmer, happier and content, I think she has had some sort of acceptance. She loves being hugged. I am aware this could be a stage and her behaviour can/will change, we just take things day by day.
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Post by questa on May 5, 2022 2:12:25 GMT
Different medications, Mich? Day by day is the only way go. My State has finally passed the 'assisted dieing' Act which I will use when various events occur.
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Post by mich64 on May 5, 2022 3:12:15 GMT
That is quite possible Questa.
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Post by kerouac2 on May 5, 2022 4:51:34 GMT
My mother was taking Aricept at first, but apparently it only helps in the early stages, and not very much anyway. The neurologist stopped it after a few visits because he said it was totally useless.
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Post by whatagain on May 5, 2022 5:37:47 GMT
I hear so often that the loved one becomes mean or even aggressive towards the remaining one(s)...
It certainly was the case with my in law, partially with my iwn Mum, and again with my neighbour/sister and her mother.
So difficult. And no reward. Just the duty.
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Post by cheerypeabrain on May 5, 2022 8:42:58 GMT
My SiL Dawn had alzheimers. Her partner, a rather disreputable individual...was claiming all sorts of benefits as her 'carer' but was in no way looking after her. We didn't have any contact with my husband's family at the time (the odd xmas card) and only found out when his niece reached out to us, telling us that her Mum was living with her now. She had visited her mother and step-father at their flat to find Dawn in an unkempt condition wandering about outside distressed. Her partner said that he couldn't cope with her (but still wanted her benefits) and wanted his step daughter to take her for a few days...he had already moved in his new girlfriend!. Turned out she was covered in bruises where he'd been hitting her (he'd always been violent according to our niece) and Dawn screamed every time her partner approached ...so Madeleine (our niece) took her in. Maddy registered herself as SiL's carer, altho she had a fight on her hands with the ex partner as he wanted the money that Dawn was entitled to for her care..but social workers got involved and it was obvious that Maddy was the best carer.
I have tremendous respect for Maddy..she was a single mother with 2 children on the autistic spectrum. She was working in a school as a teaching assistant, but decided to give up work to care for her Mummy (bless the benefit system which is designed for situations like this!) . Maddy coped brilliantly with her Mum and she had a good life in a loving home. I don't think that I could have coped like she did. When Dawn died her ex partner didn't bother coming to the funeral altho he wanted to know if there was 'any money'. We've kept in touch with Maddy altho we've not seen her since covid.
Maddy thinks that her mother's condition might be down to the fact that both her ex husband and her partner were violent. Not something I knew about altho I knew they were both a bit 'rough'.
2 of my aunties have alzheimers. Mary was cared for by her husband but died a few years ago at 91..another auntie is in a care home (she's 92 now). My cousins don't want us to visit her because she gets very confused and upset. It can happen to anyone, my aunties were such sweet, kind and funny ladies..maybe it's better to just remember them as they were. It's heartbreaking.
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Post by htmb on May 5, 2022 9:10:33 GMT
Cheery, what an absolute sh!t the partner was, and thank goodness for your niece, Maddy. People like the partner deserve to be locked away to rot for their inhumane treatment of others.
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Post by Kimby on May 5, 2022 12:50:14 GMT
My mother was taking Aricept at first, but apparently it only helps in the early stages, and not very much anyway. The neurologist stopped it after a few visits because he said it was totally useless. And Aricept has some unlovely side-effects like explosive diarrhea....
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Post by casimira on May 5, 2022 14:02:01 GMT
My former neighbor was on that medication and it did not seem to have made any difference. One day she would know me, the next time not. She would say "I don't know who you are but I know I love you".
It was heart wrenching to witness.
She would associate me with certain things like giving her figs, lemons, listening to Leonard Cohen, and certain books that we shared. We both admired some of the same writers and I always enjoyed our discussions over certain novels.
I miss her terribly when she moved in with her son and family to another part of town.
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Post by kerouac2 on May 5, 2022 15:50:49 GMT
My mother went through a violent phase. I think it tends to happen when the person finally understands that everything is finished and there is no going back. My mother's phase didn't last too long, but it was violent enough that they shipped her off to a hospital for a few days for evaluation so the nursing staff at her place could calm down and not file charges.
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Post by whatagain on May 6, 2022 7:14:05 GMT
She would say "I don't know who you are but I know I love you". It was heart wrenching to witness. . This is absolutely lovely. Her mind failed but not her heart and she knew she could trust her feelings. What a kind person she must have been and same for you for inspiring love over memory. Splendid. Thanks.
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Post by casimira on May 6, 2022 15:01:25 GMT
Thank you Whatagain for your thoughtful reply. I never thought of it that way until reading your post I thought it to be so inciteful and perceptive.
I can tell what a sensitive and thoughtful person you are. Not that I thought otherwise before as you have demonstrated a huge capacity for compassion and empathy many, many times.
What I would call "an old soul".
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Post by kerouac2 on May 6, 2022 15:05:22 GMT
My mother would sometimes say "Bonjour monsieur" when I arrived, but she would still cover me with kisses.
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Post by mich64 on May 6, 2022 23:00:56 GMT
And Aricept has some unlovely side-effects like explosive diarrhea.... Well this could explain a lot and now makes me think that this may have begun earlier than I had realized and I would bet she was on that medication. Casi your previous neighbour sounds lovely. It would be heart breaking to hear her say that because she sounds so kind hearted. My mom does that too Kerouac, lots of kisses which frustrates my dad (because of COVID), and I have noticed that she now calls me "my dear" but she always says my husbands name. Cheery, your niece Maddy is a wonderful daughter and thank goodness she was able to look after her mummy and that the right people were there to help her. I agree totally with your comment htmb!!
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Post by bixaorellana on Oct 3, 2022 17:48:01 GMT
I recently flew to the US and back again, going through the Houston airport. At the security checkpoint I was told I had to remove my shoes & put them in the bin to be scanned. I responded that, because of my age (74), that rule is not usually enforced with me. The security lady said, "Really?! You look too young!". Before going into full fledged vain preening, I asked her what the keep-your-shoes age is. It's 75.
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Post by questa on Oct 4, 2022 4:59:47 GMT
Dependence is not as threatening as I thought it would be. As you know I moved to a retirees village when my sons realised I was too far from them to come and pick me up when I fell (often). I have help from the staff for housework, gardening, shopping and socialising. Last July I had to surrender my driver's licence which is a terrible shock as I used it a lot. Now I am also getting help in dispensing my medications. a fairly tedious process x5 times /day. I am so glad a trained person is on the dot with them ready when due. I still oversee it all just to make sure, if I get it wrong my Parkies plays up on me.
I am on a new-ish med called Madopor...the Memory pill. I can feel the improvement as I don't have to grope in my memory for simple words anymore, remember what I had for dinner etc. It has a slew of side effects which I am sorting out.
Living quietly with my little ball of white fluff. Pixie. She is the perfect dog for me...well trained and affectionate. She has become a favourite with the other people in the village. I will try to post a pic but she looks like Mick's Barney.
I have had all the tests for dementia and just squeeze into the "normal" group...so far! However I am misplacing things, forgetting and misunderstanding more than I did a few months ago. The horrible pain I had in my scalp, shoulders and neck has responded well to botox.
I have also been de-cluttering and find I am not so attached to my mementoes as I was a year ago. I was holding a travel souvenir recently deciding it's fate, when the words jumped into my mind..."That was then, this is Now" and I felt like it didn't matter if it went.
However, I still remember I have Parkinsons and will probably develop Dementia. I have placed a DNR authority in my medical notes and plan to get it tattooed on my chest...to match the pink lotus on my ankle. My specialist said I have to officially ask for the assisted program, they are not allowed to raise it as an option. Anything rather than like my friend who turned into a monster!
mean while...press on regardless, chaps!
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Post by mickthecactus on Oct 4, 2022 6:46:32 GMT
You sound pretty good to me questa.
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Post by questa on Oct 4, 2022 7:59:50 GMT
It is the anyport mob that keep me on top of things. Without your interest in how I am doing and your l-o-o-ong distance caring I would not be so chipper. You have heard about having "support circles" for the bad days...well, you are mine with all your ups and downs and caring for each other, you remind me that I am not the only pebble on the beach, so suck it up, Girl, and get on with it.
Yesterday I planted 16 assorted shrubs...rosemary, lavender + Ozzy ones. Today gale force winds have flattened the lot!
C'est la vie
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Post by bjd on Oct 4, 2022 8:43:17 GMT
I wonder whether it's your nursing background that gives you your practical outlook on life and, in particular, on your health, Questa. It certainly seems to keep you strong-minded. And planting shrubs is a sign of hope in the future.
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Post by kerouac2 on Oct 4, 2022 11:03:03 GMT
Keep up the good fight, Questa.
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Post by questa on Oct 4, 2022 12:25:58 GMT
Thank you for your kind words, Mick,
Bjd. You are right in thinking my nursing background helps. I understand the processes that are taking place in my brain and body, what is "normal" and what I must report to my GP. Only the frequent falls earlier this year scared me...about 3 a week resulting in broken hands, fingers and 3 whacks to head (on concrete) causing mild concussion. I Google everything then hit my Doctor for back-up.
My best learning is the 4 afternoons in Sept and Oct at the major hospital where the neurologists are teaching junior doctors about Parkinson's. They observe my tremor, gait, manner of movement etc. They ask intelligent questions and I get to learn new information. I don't want to join the club that is for Parkies. It would scare me to see the endgame people.
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Post by mich64 on Oct 4, 2022 16:34:13 GMT
Love to hear your positivity Questa. Acceptance and dependence are a lot different when it comes to health and I think your background/life experiences have been quite beneficial to you. Any Port and the members have been a blessing to me for many years as well.
Glad to hear that you have the medical professionals you need to keep you informed, properly assessed and that they want to keep learning too.
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