Dementia Awareness

[RichA]

Way before my mum had dementia, a friend's mum had it. She told us the best tactic was to "jolly them along" and just be nice. It works.
As soon as you tell them they can't go and see their father because he's been dead 30 years or they were never really a Broadway singing sensation then you're entering conflict territory and in for hours of misery. You don't have to fully play out their harmless fantasy, but if you kill it as soon as it starts you just make them miserable or angry.

 

[Tashyboy]

Way before my mum had dementia, a friend's mum had it. She told us the best tactic was to "jolly them along" and just be nice. It works.
As soon as you tell them they can't go and see their father because he's been dead 30 years or they were never really a Broadway singing sensation then you're entering conflict territory and in for hours of misery. You don't have to fully play out their harmless fantasy, but if you kill it as soon as it starts you just make them miserable or angry.

This all day is better than “ Ave just bloody told you”. ?

 

[Robster59]

Currently staying at Dad's in Notts after he had a fall and got an infection. He hasn't got dementia but it's alarming how an infection can mess up an older persons cognitive ability. 4 days ago he drove himself to the forest for a mile walk. The following day he was out for a pub meal with a friend. Now he can't string a coherent sentence together or stand up.
Also troubling is the lack of dementia awareness among the otherwise fabulous medical staff. There are quite a lot of obvious dementia sufferers in the various wards and it's surprising how many staff are clueless how to talk to them and help them.

We had the same thing with my Father-in-Law. Every time he got an infection, it definitely affected his mental state, and even after he recovered from his infection, his mental capacity never fully recovered. I do sympathise about your hospital experience. However, he was far more down the dementia route than your Dad is.
My Father-in-Law went into the new Queen Elizabeth Hospital in Glasgow. They have individual rooms, and they put a Forget-Me-Not symbol on the door to advise the nurses that the patient has dementia, but the reality was that they were just too busy to provide dementia care. Even the food they provided for him was not suitable as they would give him packs of sandwiches which he just could not handle. We didn't blame the staff. The ward wasn't designed for dementia patients, and they were rushed off their feet.
I hope your Dad recovers fully. You may see a big improvement once his infection clears up.

 

[RichA]

We had the same thing with my Father-in-Law. Every time he got an infection, it definitely affected his mental state, and even after he recovered from his infection, his mental capacity never fully recovered. I do sympathise about your hospital experience. However, he was far more down the dementia route than your Dad is.
My Father-in-Law went into the new Queen Elizabeth Hospital in Glasgow. They have individual rooms, and they put a Forget-Me-Not symbol on the door to advise the nurses that the patient has dementia, but the reality was that they were just too busy to provide dementia care. Even the food they provided for him was not suitable as they would give him packs of sandwiches which he just could not handle. We didn't blame the staff. The ward wasn't designed for dementia patients, and they were rushed off their feet.
I hope your Dad recovers fully. You may see a big improvement once his infection clears up.

Thanks man.

 

[Rooter]

After 71 years of marriage, it has been taken out of our hands and my grandparents have been split up. They have quite differing needs now. It’s absolutely heart breaking. The only plus is they don’t really know what’s going on. Went to see them both this week, and the people that work in the homes need a bloody medal.

Grandad couldn’t work out how we had his photo already! ?

 

[Tashyboy]

Currently staying at Dad's in Notts after he had a fall and got an infection. He hasn't got dementia but it's alarming how an infection can mess up an older persons cognitive ability. 4 days ago he drove himself to the forest for a mile walk. The following day he was out for a pub meal with a friend. Now he can't string a coherent sentence together or stand up.
Also troubling is the lack of dementia awareness among the otherwise fabulous medical staff. There are quite a lot of obvious dementia sufferers in the various wards and it's surprising how many staff are clueless how to talk to them and help them.

Not a pleasant read Rich but one you may be able to relate to.

https://news.sky.com/story/hospital...ne-amid-nhs-and-social-care-gridlock-12768458

 

[RichA]

Not a pleasant read Rich but one you may be able to relate to.

https://news.sky.com/story/hospital...ne-amid-nhs-and-social-care-gridlock-12768458

Thankfully, Dad is fighting his infection well and after 4 moves in 4 days ended up on a rehabilitation ward, so he's actually getting a little stimulation. He doesn't have any obvious dementia - just typical 90-something dodderiness - and is quite sociable, so he seems to get some good interaction with all the staff. The story very much rings bells of when my mum went into hospital though. Very similar, in fact.
The lack of stimulation is really bad though. Every ward bed has one of those individual TV things, but it's about £30 per week for the basic channels everyone gets at home for free. Most of the old folks just sit staring into space for hours on end.
Fortunately, my siblings have rallied a bit and Dad has had one of us with him every day since he went in last Saturday. No mean feat when he's in Notts and we're spread between Herts, Essex, Gloucs and the Caribbean.

 

[Tashyboy]

Not gonna lie this last month or so has been purgatory re FIL and his dementia. Me and Missis T fully understand his situation but the MIL I could seriously throttle. She went to ASDA last week on her weekly shop. 30 minutes later FIL rang Missis T in serious distress looking for her. Missis T went round and he was in bits. An hour or so later she got home
And was surprised to see Missis T who told MIL he had called her and was upset. She said “ he was confused when I left but I thought he will be ok” She then said that she had recieved a call off social services re respite care ( what missis T had arranged) but she was to busy to take it as she was shopping. I was bloody raging. Missis T jumped in her car last Friday as he was a mile and a half away from his house walking home to a house he lived in 70 yrs ago. Bladdering it down at rush hour. The police walked him home a couple of days ago. I am at the end of my tether with her but I have to keep my gob shut. I don’t know how many times she has been told to take him for a Walk for stimulation. She don’t. He refused to take his 9 tablets. Missis T sorted him. Yet 90% of the time he is asleep.
Social services now heavily involved due to Missis T forcing the issue and yet MIL is saying to social services that she didn’t know that or that or that. She did she, is just to thick and bothered about her and not him. Missis T who never loses her rag is raging re her mum. Fortunately we are away from today for a couple of weeks to recharge missis Ts batteries. Her sister who has been dear and takes no crap has now picked up the baton.
Rant over. Enjoy folks coz me phone is off.

 

[Swango1980]

Not gonna lie this last month or so has been purgatory re FIL and his dementia. Me and Missis T fully understand his situation but the MIL I could seriously throttle. She went to ASDA last week on her weekly shop. 30 minutes later FIL rang Missis T in serious distress looking for her. Missis T went round and he was in bits. An hour or so later she got home
And was surprised to see Missis T who told MIL he had called her and was upset. She said “ he was confused when I left but I thought he will be ok” She then said that she had recieved a call off social services re respite care ( what missis T had arranged) but she was to busy to take it as she was shopping. I was bloody raging. Missis T jumped in her car last Friday as he was a mile and a half away from his house walking home to a house he lived in 70 yrs ago. Bladdering it down at rush hour. The police walked him home a couple of days ago. I am at the end of my tether with her but I have to keep my gob shut. I don’t know how many times she has been told to take him for a Walk for stimulation. She don’t. He refused to take his 9 tablets. Missis T sorted him. Yet 90% of the time he is asleep.
Social services now heavily involved due to Missis T forcing the issue and yet MIL is saying to social services that she didn’t know that or that or that. She did she, is just to thick and bothered about her and not him. Missis T who never loses her rag is raging re her mum. Fortunately we are away from today for a couple of weeks to recharge missis Ts batteries. Her sister who has been dear and takes no crap has now picked up the baton.
Rant over. Enjoy folks coz me phone is off.

I wonder if MIL is in denial? Maybe not about FIL condition, but almost convincing herself that life can almost go on as normal? I've no idea, not experienced it. But such things might really impact the mental health of the MIL who has to constantly live with someone with dementia, which perhaps can make people act irrationally, relative how others would react looking more from the outside?

Horrible condition, and it must be horrific for loved ones around the person who is ill, especially those that have lived most of their lives under the same roof.

 

[Tashyboy]

First sentence hits the nail on the head. She has never had to do owt and has no plans to start.

 

[Lord Tyrion]

@Tashyboy huge sympathy for what you are going through. We went through similar with the FiL, denial, and my wife had to do most of the slogging to get her mum into a home. Jeez it took a while, a lot of time, aggro and stress. It was a constant battle. Knowing someone is in danger due to neglect and being limited in what you can do, without going down the nuclear route, is very, very difficult to see. Your FiL needs to be a in a specialist care home, you know it, your wife knows it, your SiL knows it. Best of luck, somehow your MiL needs to be led down that path.

 

[Tashyboy]

So today we had a meeting at in-laws to sort out respite care. Basically so someone can sit with FIL whilst MIL went out to do shopping etc. At the meeting was the in laws. Me and Missis T. An occupational therapist who has been a fair few times and the young girl who was sorting out respite care. Bottom line the FIL tripped out. He got overly aggressive, he had his hands on Missis T and then the respite girl. Missis T who was fantastic throughout all this tried to calm him down. At this point he once more had hold of Missis T. At that point I intervened. He threatened to sort me out and “I said go on then”. He backed down as he only lays his hands in women. MIL at this point called the police. Missis T managed to calm
Him down as I followed the physio guy out of the house. Suffice to say it never went well. How I kept my fist off the end of his nose is a question I will Ask myself for years to come. Missis T said “ she wouldn’t have blamed me”. It’s not a pleasant feeling seeing someone with their hands in your wife. Or another young girl.
Apart from That it went well.
Not been the best of days.

 

[RichA]

So today we had a meeting at in-laws to sort out respite care. Basically so someone can sit with FIL whilst MIL went out to do shopping etc. At the meeting was the in laws. Me and Missis T. An occupational therapist who has been a fair few times and the young girl who was sorting out respite care. Bottom line the FIL tripped out. He got overly aggressive, he had his hands on Missis T and then the respite girl. Missis T who was fantastic throughout all this tried to calm him down. At this point he once more had hold of Missis T. At that point I intervened. He threatened to sort me out and “I said go on then”. He backed down as he only lays his hands in women. MIL at this point called the police. Missis T managed to calm
Him down as I followed the physio guy out of the house. Suffice to say it never went well. How I kept my fist off the end of his nose is a question I will Ask myself for years to come. Missis T said “ she wouldn’t have blamed me”. It’s not a pleasant feeling seeing someone with their hands in your wife. Or another young girl.
Apart from That it went well.
Not been the best of days.

I feel for you man. Hope you get some respite care sorted.

 

[clubchamp98]

So today we had a meeting at in-laws to sort out respite care. Basically so someone can sit with FIL whilst MIL went out to do shopping etc. At the meeting was the in laws. Me and Missis T. An occupational therapist who has been a fair few times and the young girl who was sorting out respite care. Bottom line the FIL tripped out. He got overly aggressive, he had his hands on Missis T and then the respite girl. Missis T who was fantastic throughout all this tried to calm him down. At this point he once more had hold of Missis T. At that point I intervened. He threatened to sort me out and “I said go on then”. He backed down as he only lays his hands in women. MIL at this point called the police. Missis T managed to calm
Him down as I followed the physio guy out of the house. Suffice to say it never went well. How I kept my fist off the end of his nose is a question I will Ask myself for years to come. Missis T said “ she wouldn’t have blamed me”. It’s not a pleasant feeling seeing someone with their hands in your wife. Or another young girl.
Apart from That it went well.
Not been the best of days.

When my mum was diagnosed I had a social worker come round to sort some respite out.
I said to my dad “ just say yes to everything” as you can always say you don’t need things at a later date .
but saying NO it’s harder to get it back later.

SW comes in and dad just says “no” to everything.
I could have killed him there and then.
but as next of kin he had the final say.

so get where your coming from Tash.
possibly the hardest thing I have ever had to deal with.

 

[Tashyboy]

When my mum was diagnosed I had a social worker come round to sort some respite out.
I said to my dad “ just say yes to everything” as you can always say you don’t need things at a later date .
but saying NO it’s harder to get it back later.

SW comes in and dad just says “no” to everything.
I could have killed him there and then.
but as next of kin he had the final say.

so get where your coming from Tash.
possibly the hardest thing I have ever had to deal with.

The difficult thing is that when he was going ballistic, the colour just drained from him. He looked like he would have a heart attack. missis T and her sis have said if he does, do not attempt to resuscitate him. Quite sad when it gets to that.

 

[SwingsitlikeHogan]

Social services have been excellent working with my Mrs to sort out a care home for some convalescence time for my mil (93 next month and recovering from broken shoulder and pelvis - and at the moment her ability to get about and look after herself is very severely limited). But my MiL is confused, maybe not dementia, and not really switched on to what’s being done for her. And she was very resistant to going into care, resentful with my wife for her insisting she had to.

She kinda gets it, but as she isolated all through pandemic she seems to have rather lost the ability or indeed the courage to converse and integrate with strangers. And so my Mrs went to her room in the home yesterday to find her mum half on, half off the bed and fully clothed. Not really able to decide what to do, or indeed what she could do, and she hasn’t yet got used to the idea of pressing the Help button or using the Help mat that’s by her bed.

Its distressing for my Mrs, but what else can we do. Maybe she’ll be able to go home in 4-8wks time, but even if she is able to do that how she will safely be able to negotiate the stairs in her house to bedroom and bathroom/toilet we doubt…and doing any sort of downstairs conversion or adaptation is problematic given my wife‘s brother is having to live there also. And that’s complicated.

My thoughts and prayers are with all who are struggling with a relative and close-one in such circumstances. Can be so difficult and distressing.

 

[Tashyboy]

Social services have been excellent working with my Mrs to sort out a care home for some convalescence time for my mil (93 next month and recovering from broken shoulder and pelvis - and at the moment her ability to get about and look after herself is very severely limited). But my MiL is confused, maybe not dementia, and not really switched on to what’s being done for her. And she was very resistant to going into care, resentful with my wife for her insisting she had to.

She kinda gets it, but as she isolated all through pandemic she seems to have rather lost the ability or indeed the courage to converse and integrate with strangers. And so my Mrs went to her room in the home yesterday to find her mum half on, half off the bed and fully clothed. Not really able to decide what to do, or indeed what she could do, and she hasn’t yet got used to the idea of pressing the Help button or using the Help mat that’s by her bed.

Its distressing for my Mrs, but what else can we do. Maybe she’ll be able to go home in 4-8wks time, but even if she is able to do that how she will safely be able to negotiate the stairs in her house to bedroom and bathroom/toilet we doubt…and doing any sort of downstairs conversion or adaptation is problematic given my wife‘s brother is having to live there also. And that’s complicated.

My thoughts and prayers are with all who are struggling with a relative and close-one in such circumstances. Can be so difficult and distressing.

Ave got to say SILH that the previous stories that I’ve read on here of peoples experiences has massively helped. It’s like being on a bus and you know one stop is “ I want to do the best for my parents but am I the one to give that”.
Another stop is “ I should have put them into care sooner”. Another “ family get there lives back”.
I could go on and on, and some of the experiences and thoughts I have read on this forum I thought were brutal and harsh A year or two ago. Now me and Missis T are in a place where I think some of the comments have firmly hit the nail on the head and it is a terrible place to be in. When me and the kids were at Wembley yesterday Missis T spent all day catching up on a days full washing, ironing, cleaning the house etc. She said she enjoyed it being busy, but it was catch up and she was tired when we got back late. We have had some good talks and we agree that because of the FIL previous personality which is now exaggerated because of his condition, it will not end well.
Thoughts SILH.

 

[RichA]

It's a really difficult balance: what's best/safest for them vs what's best for us/what we can live with after it's over.
Mum had it.
MiL has it.
Dad is starting to show signs of it.
I've got 8 years of fairly intense experience and still don't know the answers. Good luck to all of us.
The bit I've underlined seems most relevant, from a personal perspective.

 

[Voyager EMH]

Don't think I've posted on this thread before. I mainly just read through very watery eyes.
That last comment "what we can live with after it's over." struck a massive chord.
Did myself in, I did.
Over did it and suffered slow build-up exhaustion and low blood pressure. Early retirement was prompted.
It was the constant thoughts of, "Am I doing the best/right thing? Am I doing enough? Will I regret not having done more? Will I feel guilty?"
It wasn't dementia for my mum, but a combination of many disorders.
But I massively empathise with all these posts.

Please look after yourselves and each other as well as the cherished loved-one in need.

 

[oxymoron]

Ave got to say SILH that the previous stories that I’ve read on here of peoples experiences has massively helped. It’s like being on a bus and you know one stop is “ I want to do the best for my parents but am I the one to give that”.
Another stop is “ I should have put them into care sooner”. Another “ family get there lives back”.
I could go on and on, and some of the experiences and thoughts I have read on this forum I thought were brutal and harsh A year or two ago. Now me and Missis T are in a place where I think some of the comments have firmly hit the nail on the head and it is a terrible place to be in. When me and the kids were at Wembley yesterday Missis T spent all day catching up on a days full washing, ironing, cleaning the house etc. She said she enjoyed it being busy, but it was catch up and she was tired when we got back late. We have had some good talks and we agree that because of the FIL previous personality which is now exaggerated because of his condition, it will not end well.
Thoughts SILH.

Tashy, you have had about the worst this disease can possibly throw at anyone and i can only thank God we did not have this level of trouble this causes as Dad passed before it got really traumatic for us .
I keep dipping in and out of this thread as i feel i have nothing to contribute now he has passed , however i see the FIL is beginning to show very early signs the same as dad did and the missis is
terrified as her step mum sound exactly like your MIL and as you say , it will not end well .
Keep your chin up Tashy , you and your family deserve all the best going forward, .