What gave you the first clue that something was wrong?
- Thread starter Eleonora
- Start date
Ha! Garnuft - Christmas presents! You reminded me of another one! The year I was presented with a gift wrapped packet of raisins for Christmas! And daughter got a gift wrapped packet of tortilla chips!
Last Christmas my daughters got a packet of humbugs each from mum - wrapped, of course!
I don't think I got anything, except a pair of earrings which for her dignity's sake, I wrapped and said were from her You know, I have forgotten so many of the signs that definitely pointed to dementia, I just didn't want to accept it
And what strikes me reading this thread, is that so many of the definite signs concern social interaction; I don't think I've seen one yet on this particular thread about risks from cookers, etc .....When Mam used to say to Dad 'What are we going to get the bairns for Xmas?'
My Dad's catchphrase was...
'Make them all the same...give them nowt!'
I used to fall about laughing when he said it.
Mam's last Christmas, she wouldn't/couldn't give a gift.
Empathy?
Yes, I forgot about that as a signal.
Mam said to me that my son, the grandson she adored, even until the day she died, who spent half his week with her, who she fed through a tube in the hospital when he was born...dementia stepped into that relationship too.
'I can't come tomorrow Mam, the bairn's got to go in to hospital'.
'Time he was in a home' she said.
Dementia is a robber.
But I knew my Mam, I knew her well. I'm glad I was able to see through it's mask.
Mam seemed to break through the dementia before she died and from her hospital bed she spoon fed my son (26, disabled) a yoghurt that was left for her to eat.
Truth and comfort.
My Dad's catchphrase was...
'Make them all the same...give them nowt!'
I used to fall about laughing when he said it.
Mam's last Christmas, she wouldn't/couldn't give a gift.
Empathy?
Yes, I forgot about that as a signal.
Mam said to me that my son, the grandson she adored, even until the day she died, who spent half his week with her, who she fed through a tube in the hospital when he was born...dementia stepped into that relationship too.
'I can't come tomorrow Mam, the bairn's got to go in to hospital'.
'Time he was in a home' she said.
Dementia is a robber.
But I knew my Mam, I knew her well. I'm glad I was able to see through it's mask.
Mam seemed to break through the dementia before she died and from her hospital bed she spoon fed my son (26, disabled) a yoghurt that was left for her to eat.
Truth and comfort.
That just choked me up Garnuft, I think I must have something in my eye.
I've only know my MIL since she was in her fifties, (she's 83 now) but empathy was never one of her qualities so we didn't notice any change there.
I'm glad your mum and son had a good moment at the end.
I've only know my MIL since she was in her fifties, (she's 83 now) but empathy was never one of her qualities so we didn't notice any change there.
I'm glad your mum and son had a good moment at the end.
In hindsight it should have been obvious from the start
My mum's dementia was of sudden onset but her formal diagnosis was a laughable 18 months after she'd been looked after 24/7 by private live-in carers. In 2007 she was admitted to hospital with a rare and life-threatening condition that, among other things, inflamed and damaged the small blood vessels in her brain.
In Jan 2008 my brother and I got her home from hospital with private carers. SS and CMHT had been keeping her there for no other reason than they had decided she needed to live in a NH and hadn't got a suitable place. We kept saying we wanted her to come home; they said she couldn't manage to live alone any more and that it was impossible to get carers to live in. "We've never heard of that. Maybe in England, but you won't find carers like that in Scotland" was their mantra.
My brother and I found it hard to engage with people who thought they knew best and that we had no place in the decision-making process, even though my brother has welfare POA. The hospital doctors and nurses refused to tell us when she was ready for discharge. They were sarcastic to me and treated me like a pest, getting in their way when they were so busy. So busy providing our mum with bed and board on the NHS tab, when she was well enough to go home, but they wouldn't admit this, presumably because the hospital SW had told them not to? I asked to have a meeting to have input into her discharge plan. What's that? they said. The arrogance of the authorities was unbelievable. We eventually decided to tell them we were taking her home. The nurses couldn't pack her case fast enough and then admitted that she could have been discharged 6 weeks ago if there had been somewhere suitable for her to go.
The point of rehearsing that sorry saga is that after all this excessive 'care', once we decided to bypass what SS decided was best for her then we found ourselves completely alone in managing our mum's care. She was immediately taken off the SS books. Her GP monitored her physical recovery but refused to accept that she had dementia. We ourselves didn't know how much she would recover. Physically she was still convalescing, very thin, learning to walk again, and plagued by hallucinations and paranoia after months living on a hospital ward. We hoped that after a few months she would be physically well and could then perhaps have paid help in the house as required, maybe not needing a live-in carer any more.
When 7 months later I eventually got SS engaged again in order to get Direct Payment funding we were fortunate to have an excellent SW with mental health nursing experience. It was she who confirmed that our mum had dementia, that she wasn't going to recover mentally, and that she would slowly get worse. The official NHS diagnosis came in 2009 when the psychiatrist assessed her as not having capacity with regard to legal and financial matters. She had wanted to change her Will and the solicitor called in the psychiatrist to check whether it was OK to take her instruction.
That's the very long answer to "what gave you the first clue..." The short answer is that from the moment our mum returned to her own home she was entirely passive about all domestic arrangements, personal care and anything that involved decision-making. She resented the presence of the carers but expected them to do everything. If they tried to engage her in cleaning or meal preparation as an activity to engage her mentally, she would always refuse. She just wanted to sit in her chair, or preferabaly take to her bed, and be waited on.
Prior to her severe illness she had been, we believe, mentally ill for a few years but our father covered this up as nerves because she was over emotional and mustn't be upset. When he died this got worse, but we put it down to the stress of grief and having to tackle the mountain of administration that comes with the death of your partner, especially when he had been the one who dealt with finance, utilities, insurance, and so on. She completely panicked when faced with this responsibility. Therefore some of her oddness afterwards was a continuation of previous behaviour. We didn't give it the label of dementia until probably a year after she had suffered catastrophic inflammatory brain damage and consequent dementia of sudden onset.
My mum's dementia was of sudden onset but her formal diagnosis was a laughable 18 months after she'd been looked after 24/7 by private live-in carers. In 2007 she was admitted to hospital with a rare and life-threatening condition that, among other things, inflamed and damaged the small blood vessels in her brain.
In Jan 2008 my brother and I got her home from hospital with private carers. SS and CMHT had been keeping her there for no other reason than they had decided she needed to live in a NH and hadn't got a suitable place. We kept saying we wanted her to come home; they said she couldn't manage to live alone any more and that it was impossible to get carers to live in. "We've never heard of that. Maybe in England, but you won't find carers like that in Scotland" was their mantra.
My brother and I found it hard to engage with people who thought they knew best and that we had no place in the decision-making process, even though my brother has welfare POA. The hospital doctors and nurses refused to tell us when she was ready for discharge. They were sarcastic to me and treated me like a pest, getting in their way when they were so busy. So busy providing our mum with bed and board on the NHS tab, when she was well enough to go home, but they wouldn't admit this, presumably because the hospital SW had told them not to? I asked to have a meeting to have input into her discharge plan. What's that? they said.
The arrogance of the authorities was unbelievable. We eventually decided to tell them we were taking her home. The nurses couldn't pack her case fast enough and then admitted that she could have been discharged 6 weeks ago if there had been somewhere suitable for her to go.The point of rehearsing that sorry saga is that after all this excessive 'care', once we decided to bypass what SS decided was best for her then we found ourselves completely alone in managing our mum's care. She was immediately taken off the SS books. Her GP monitored her physical recovery but refused to accept that she had dementia. We ourselves didn't know how much she would recover. Physically she was still convalescing, very thin, learning to walk again, and plagued by hallucinations and paranoia after months living on a hospital ward. We hoped that after a few months she would be physically well and could then perhaps have paid help in the house as required, maybe not needing a live-in carer any more.
When 7 months later I eventually got SS engaged again in order to get Direct Payment funding we were fortunate to have an excellent SW with mental health nursing experience. It was she who confirmed that our mum had dementia, that she wasn't going to recover mentally, and that she would slowly get worse. The official NHS diagnosis came in 2009 when the psychiatrist assessed her as not having capacity with regard to legal and financial matters. She had wanted to change her Will and the solicitor called in the psychiatrist to check whether it was OK to take her instruction.
That's the very long answer to "what gave you the first clue..." The short answer is that from the moment our mum returned to her own home she was entirely passive about all domestic arrangements, personal care and anything that involved decision-making. She resented the presence of the carers but expected them to do everything. If they tried to engage her in cleaning or meal preparation as an activity to engage her mentally, she would always refuse. She just wanted to sit in her chair, or preferabaly take to her bed, and be waited on.
Prior to her severe illness she had been, we believe, mentally ill for a few years but our father covered this up as nerves because she was over emotional and mustn't be upset. When he died this got worse, but we put it down to the stress of grief and having to tackle the mountain of administration that comes with the death of your partner, especially when he had been the one who dealt with finance, utilities, insurance, and so on. She completely panicked when faced with this responsibility. Therefore some of her oddness afterwards was a continuation of previous behaviour. We didn't give it the label of dementia until probably a year after she had suffered catastrophic inflammatory brain damage and consequent dementia of sudden onset.
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My OH is a fair bit older than me and I put many of his memory lapses down to age. He was a performer on and off stage. He recognised that he couldn't learn lines as he used to and he put it down to age as well. The flip side of this is that he has always been very good at covering his lapses. He always said, with a joke, "what I don't know I make up". As a storyteller I was used to him changing or embellishing a story. What spurred me to action was a dinner party. I was at one end of the table and he the other and I realised that a couple of women on my end were laughing at him, not the story. Now in late mid stage Alz, he can't remember the stories, the speeches from Shakespeare he used to recite, the funny sayings and mouldy old jokes he used to tell. Cruel.
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How horrible of them to do that. Hope they never have to experience this themselves.
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I very much hope that the first action you took was to give those women a verbal slap.
There goes that Karma-building again! Just hope they know what's likely to be coming their way. Not that I wish them anything but a sudden awareness of just how awful they were. Any chance of putting them on the spot personally, or via someone else perhaps? They are presumably so thick-skinned that they think the phrase "There but for the grace of God" applies to everyone else. So sorry. Loving thoughts X
Oh, Garnuft, what a lovely memory. That was your 'real' Mam showing her love. xx
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Looking back (there's that hindsight again) Pete began to stress over his job. He actually thought he couldn't teach anymore. He then had a 'breakdown' with psychosis and was admitted to a MHU. He kept telling all the medics that he was losing his memory 'not so Mr T-it's anxiety'.Various cocktails of drugs did no good. Then he became paranoid.Lack of empathy.Unable to enjoy socialising.Unable to partake in hobbies.Unable to read.
You asked what was the first clue-all of the above had the benefit of hindsight- it was when Pete was out in the garden tearing up the recycling and letting it fly round the garden. It was everywhere.I think that was when I KNEW
Take care
Lyn T
You asked what was the first clue-all of the above had the benefit of hindsight- it was when Pete was out in the garden tearing up the recycling and letting it fly round the garden. It was everywhere.I think that was when I KNEW
Take care
Lyn T
First off, work would have noticed, but they didn't realize what was going on, and my OH lost his job in January of 2010 due to increasing errors and lack of focus at work.
For me at home, it was that B didn't finish anything he started when doing simple chores. If he vacuumed he wouldn't put the vacuum away; emptying the dishwasher he would forget a few items in it or leave some on the counter (I didn't know at the time he couldn't figure out where they go). He would put something back in the garage in odd places, or not know where to find things that he put away. He would put something into, or pull something out of the freezer and leave the lid open. When we brought in groceries from the car, either a bag was left in the trunk or on the floor in the hall. So everything he did I would have to double-check and tell him to finish, or I finished in frustration. Our arguments went from 1 a year to 3 a week.
When he went to work part-time at a friend's company in late 2010, our friend took me to lunch after the first month and told me to get him checked out as something was seriously wrong. Apparently at work he kept forgetting how to turn on the computer, couldn't learn the simple tasks of the job, and put things away in weird places (like on the floor in the middle of the room). I hugged my friend with relief as all along I thought it was just me being overly controlling/demanding!
By November of 2012 my husband had surgery to clamp off an 8mm aneurysm in the frontal lobe, and 6-months later, after much testing and review of scans, was diagnosed with early onset dementia at the age of 55. According to the neurosurgeon, the scan that showed the aneurysm also showed atrophy of the brain "to that of a 70 year old".
For me at home, it was that B didn't finish anything he started when doing simple chores. If he vacuumed he wouldn't put the vacuum away; emptying the dishwasher he would forget a few items in it or leave some on the counter (I didn't know at the time he couldn't figure out where they go). He would put something back in the garage in odd places, or not know where to find things that he put away. He would put something into, or pull something out of the freezer and leave the lid open. When we brought in groceries from the car, either a bag was left in the trunk or on the floor in the hall. So everything he did I would have to double-check and tell him to finish, or I finished in frustration. Our arguments went from 1 a year to 3 a week.
When he went to work part-time at a friend's company in late 2010, our friend took me to lunch after the first month and told me to get him checked out as something was seriously wrong. Apparently at work he kept forgetting how to turn on the computer, couldn't learn the simple tasks of the job, and put things away in weird places (like on the floor in the middle of the room). I hugged my friend with relief as all along I thought it was just me being overly controlling/demanding!
By November of 2012 my husband had surgery to clamp off an 8mm aneurysm in the frontal lobe, and 6-months later, after much testing and review of scans, was diagnosed with early onset dementia at the age of 55. According to the neurosurgeon, the scan that showed the aneurysm also showed atrophy of the brain "to that of a 70 year old".
Eleonora, for a long time, maybe two years or a bit longer, people would ask my husband a question, and he'd reply "Can't remember." This happened some long while before the active illness set in. My, but I never knew what I was truly in for. Hope you are reasonably all right? Hugs.
something wrong
My hubby has Parkinson's and mixed dementia.
I was caring for my dad w myeloma and mum w Alzheimer' and trying to keep working part time when I noticed that my husband was very forgetful and confused about arrangements.He also would be driving and take a strange route to a very familiar place.
He was diagnosed a couple of years ago w 'mild cognitive impairment'. Then he suddenly went off swimming far out when we were on holiday and nearly drowned .He was saved by the lifeguards on the beach.He had never done this before.
He became very anxious about being on time for things even wanting to leave the house about an hour before the appointment.
His gait has changed significantly and he has really lost his muscle tone.
He also makes very weird squishy noises w his mouth which I find very off putting.
The most recent diagnosis is mixed dementia.
I feel overwhelmed at times.
I suffer w bipolar disorder myself and so things can be very difficult at tmes.I had to give up my job in2011 as I was too tired and stressed to continue.
At the moment ,I am responsible for my mum's affairs and our own as my husband can't cope with money matters.I do feel overwhelmed and very tired at times.
My hubby has Parkinson's and mixed dementia.
I was caring for my dad w myeloma and mum w Alzheimer' and trying to keep working part time when I noticed that my husband was very forgetful and confused about arrangements.He also would be driving and take a strange route to a very familiar place.
He was diagnosed a couple of years ago w 'mild cognitive impairment'. Then he suddenly went off swimming far out when we were on holiday and nearly drowned .He was saved by the lifeguards on the beach.He had never done this before.
He became very anxious about being on time for things even wanting to leave the house about an hour before the appointment.
His gait has changed significantly and he has really lost his muscle tone.
He also makes very weird squishy noises w his mouth which I find very off putting.
The most recent diagnosis is mixed dementia.
I feel overwhelmed at times.
I suffer w bipolar disorder myself and so things can be very difficult at tmes.I had to give up my job in2011 as I was too tired and stressed to continue.
At the moment ,I am responsible for my mum's affairs and our own as my husband can't cope with money matters.I do feel overwhelmed and very tired at times.
I forgot to mention that w my mum the first real indication of Alzheimer's was when she couldn't make sense of her watch even though it was digital. She also developed a habit of wanting to check the time every few minutes as she wanted it to be time for lunch or bed and she thought there was something wrong with her watch as it didn't show the time she wanted.I found it so excruciating that I would make excuses to go off and do things in the garden or another part of the house.
How cruel people can be! I have noticed that my hubby's joke making has suffered lately.He fills in the gsps with strange additions which don't really work.
So sorry to hear you also struggle with Bi Polar, Madamet. My son, who is now our main helper, also juggles this disorder. As he tells me, as long as you manage to keep all the balls in the air at the same time............ As yet, my H is in early stages, so Dom isn't called on all that much thankfully. You have my admiration and very good wishes. X
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