Dementia Awareness

[clubchamp98]

Tough times Tash for you and Mrs T.
All you can do is do your best.

Not the best sentiment but he’s better off now .!
That’s how I thought when my dad went.
He would not want to live like that!
Its a horrible thing and devastating to the rest of the family.

Hope you get some rest and time to yourselves now.

 

[Tashyboy]

Tough times Tash for you and Mrs T.
All you can do is do your best.

Not the best sentiment but he’s better off now .!
That’s how I thought when my dad went.
He would not want to live like that!
Its a horrible thing and devastating to the rest of the family.

Hope you get some rest and time to yourselves now.

I couldn’t of written it better.

 

[Robster59]

Condolences to you and your family Tashy. We all know that these will finish up with a sad ending, but you've done everything you can, and more.
It is sad but true to say he is at peace and you have some weight off your shoulders.
Remember him as he was in life, and not his final months/years and cherish those memories.

 

[Tashyboy]

Missis T is off to the bank tomorrow to finalise the bank transfer of funds from FIL TO MIL re FILs will. He passed away in January. I suppose that door is now closed. However another opens.
My dad has early onset Dementia and Alzheimer’s. He has had it over two years. If there was a positive re the FIL, it was knowing the path I was going down with him, my father would be following a similar path. In a way I could give my mother the heads up. It hasn’t. I have now come to the conclusion all the stories I told her, it was just gossip to her. It came to a head one day when I was in hospital with my dad. She said to me “ I don’t think you know what I am going through with your dad”. I lost the plot with her. I told her “ what the **** do you think me and Deb/ Missis T have been going through for the last three years”. I was livid.
When FIL passed away. Missis T said “ we should take your parents on holiday”. I really beat myself up whether to or not. We have been away loads of times with them both here and abroad. But my dad who also has COPD, Knackered knees, Leukaemia etc etc. is struggling. We went to Lanzarote a couple of weeks ago. It was challenging to say the least. Mother raising her voice at me dad, arguing with him. Me dad always forgetting how to drive a disability scooter. Me and Missis T made some memories but we realised my mum and dad are vulnerable and the days of travelling abroad are done.
The last three days of the holiday my mum was rough. We got back and I spent three days telling her to get to the drs. Eventually I told her point blank to make the appointment or I will. She went and has a chest infection, she also has a pre cancerous lesion on her head. I despair.
Went round last Tuesday to see how they are and as I was leaving she prompted my dad to tell me something. “ I say son, me and your mum have been talking and we are looking at getting a years holiday insurance again, coz the holiday went ok didn’t it”. I was speechless. i was bloody livid. Last years insurance was £2,500. It’s not like I have told them not to go on holiday. They can do that in the UK. Me dad wants to go back to Scotland, he loves it. She doesn’t
I normally go round 2-3 times a week. Ring 2-3 times a week. It has done me bigstyle. I have done nowt but moan all week. How can me mum ask her husband to drop this news when she couldn’t tell me herself. I am still raging.
I normally call after golf, Tuesday and Thursday. I rang today to say I am not calling as I am full of flu and head cold. Me dad said your mum is in Bed and is back to the drs at 7.30 pm as she is still not well. I just despair with her. Me dad for all his ailments is our good, but me Mum

 

[ColchesterFC]

Had a phone call from my dad this evening. He wanted to call me before I heard the news elsewhere as he "knows how these things can be blown out of proportion". He said they'd been out for the day yesterday and something had happened. He was very incoherent and as bad as he has been since the diagnosis. I was thinking that their house had been broken in to while they were out or they'd lost the cat, or something on that scale but it seems that nothing had actually happened. Got him to pass the phone to my stepmum who said that they'd visited an airfield and he'd said to someone there that he had grown up around there, despite never having lived anywhere near. Chatted to my neighbour who has trained in dementia care who said that maybe the airfield had triggered a memory as there was one near where he grew up. He'd also insisted that he wanted to call his dad who died over 30 years ago. It's such a bastard of a disease and the only consolation I can find is to hope with all my heart that he isn't able to comprehend what is happening.

 

[Tashyboy]

Had a phone call from my dad this evening. He wanted to call me before I heard the news elsewhere as he "knows how these things can be blown out of proportion". He said they'd been out for the day yesterday and something had happened. He was very incoherent and as bad as he has been since the diagnosis. I was thinking that their house had been broken in to while they were out or they'd lost the cat, or something on that scale but it seems that nothing had actually happened. Got him to pass the phone to my stepmum who said that they'd visited an airfield and he'd said to someone there that he had grown up around there, despite never having lived anywhere near. Chatted to my neighbour who has trained in dementia care who said that maybe the airfield had triggered a memory as there was one near where he grew up. He'd also insisted that he wanted to call his dad who died over 30 years ago. It's such a bastard of a disease and the only consolation I can find is to hope with all my heart that he isn't able to comprehend what is happening.

I have to say that the mental strain in dealing with this is at times off the scale. The more I sit back and think about what we have gone through with the FIL and now me dad. Missis T was and is immense. The training she has had in dealing with this has been immense in helping, dealing and being proactive. Problem with my mum, she don’t understand or do proactive. She
“ told me” a couple of weeks ago to apply for a “ blue badge”. My dad stopped driving 2 1/2 years ago. I told her to apply for one 6 years ago. I have a feeling you may be having a few more chats with your neighbour.
Good luck with it and although it’s not everyone’s way of dealing with it. Talking about it on here massively helped me. It is one of the few topics on the forum that has not led to arguments.

 

[RichA]

Yep. Dementia is .
Mum had it and Dad really couldn't deal with it. Now he has it. Fortunately he is now in a nice care home.
All I can say is what I was told by a friend whose MiL had it years ago. Jolly them along. Be nice. Correct them, but in a kind way. Be infinitely patient, even when it's almost impossibly difficult.
Laugh when it's funny, but not at them. If you don't find some humour in it, it can destroy you.
There are three young male healthcare assistants at Dad's place who are amazingly caring. They call him "Pops" and are clearly fond of the folks they look after. Dad recently started talking to me about how the German boys are taking over the "hotel". He's having vivid dreams that continue while he's awake. The healthcare guys wear green uniforms that he has associated with German soldiers. It took us a week to figure this out.

 

[Hobbit]

Yep. Dementia is .
Mum had it and Dad really couldn't deal with it. Now he has it. Fortunately he is now in a nice care home.
All I can say is what I was told by a friend whose MiL had it years ago. Jolly them along. Be nice. Correct them, but in a kind way. Be infinitely patient, even when it's almost impossibly difficult.
Laugh when it's funny, but not at them. If you don't find some humour in it, it can destroy you.
There are three young male healthcare assistants at Dad's place who are amazingly caring. They call him "Pops" and are clearly fond of the folks they look after. Dad recently started talking to me about how the German boys are taking over the "hotel". He's having vivid dreams that continue while he's awake. The healthcare guys wear green uniforms that he has associated with German soldiers. It took us a week to figure this out.

My MiL thought the carers in uniform were pilots. In her head she connected it to the RAF pilot she was in love with during WW2.

One of the things we found that helped when she went off piste was to change the subject, starting with a question, e.g. “did you see,” or “what did you have for lunch.”

Confronting their beliefs only leads to frustration for them and you. A “yes,” then change topics often worked.

 

[Tashyboy]

This post is like a good bad penny that keeps returning. Been to me parents today and had a good natter with the neighbours. She has taken my number and will keep an eye on me parents. Good neighbours are worth a fortune that you cannot put a price on.

 

[RichA]

Just saw this advert on TV. Mum had dementia nightmares. Dad is approaching that stage but it's just very vivid dreams for now that continue when he wakes.
My sisters and even some of the staff at the care home don't quite get it (it's not a dementia care home). This advert might help people understand - I know this is how mum felt when it started to really kick in...

 

[Tashyboy]

Not gonna lie, it’s been a painful few months.. I took my parents away in May to Lanzarote on what we thought was there last holiday abroad due to my fathers dementia and his failing health, knees etc. Since then they have been to Benidorm and have a cruise in a couple of weeks. I have told my mum I will have nothing to do with any of her holidays, taking to the airport etc.
Lo and behold the dementia support worker asked me how things were going. I told her what was going off. She said that technically as I have POA I could stop my dad from going. I told my mum this and she sulked. A couple of weeks later the dementia worker called me back and said “ your mum has rung me”. It transpires me mum had rung to see if she could book the cruise. She then spoke about how my Brother and Sister who my mum does not see has said “ go on holiday”. Bottom line my mum has played me and my brother off on the other two. The care worker said “ your mum has told me a couple of other things but asked me not to say owt re privacy”. I came off the phone and was bloody livid.
Bottom line my mum is being manipulative to get what she wants( holidays) and using my dad who cannot make decisions to get her way. The thing is, we haven’t told her not to go on Holiday, but stay in this country so if anything goes wrong, we can help.
Suffice to say, things have changed. I used to drop everything at the drop of a hat to help her/ me dad. I still go round but don’t chase round like a bloody idiot. I am seething with her.
I went to my Aunties in Clitheroe on Sunday as we were in West Yorkshire. She told me “ “your mum told me she wanted to go to the Caribbean for a month over Christmas and New Year, but the insurance company wanted another £2,500 on top of the £3,000 she has already paid”.

 

[Lord Tyrion]

@Tashyboy wow, just staggering really. The denial and manipulation is not uncommon with partners of people living with dementia but this is another level. I think you are taking the right approach in stepping back a little but that is still difficult. After all, you want your dad to be safe.

Out of interest, could your mum not go on her own, or with a friend? Could your dad go into respite care whilst your mum is away? Is that a possible compromise or would your mum not entertain that?

 

[RichA]

Don't underestimate the harm that living full-time does to a dementia sufferer's partner's own mental health.
With little experience of dementia ourselves, it was only with hindsight that we realised Dad had been covering up and dealing with Mum's dementia on his own. It almost destroyed him. A friend who's been though it all told us later that it's actually the partner who needs the support rather than the sufferer.
Dad's got dementia himself and is in a care home now. I speak to him every day for 5 minutes and spend one day a week with him and it's taking its toll on my nerves. I can only imagine how stressful it must be taking care of a partner at home.
Not criticising or judging anyone - it's brutal on all concerned.

 

[Tashyboy]

@Tashyboy wow, just staggering really. The denial and manipulation is not uncommon with partners of people living with dementia but this is another level. I think you are taking the right approach in stepping back a little but that is still difficult. After all, you want your dad to be safe.

Out of interest, could your mum not go on her own, or with a friend? Could your dad go into respite care whilst your mum is away? Is that a possible compromise or would your mum not entertain that?

Responding to both yourself and Rich.
Re me dad, he is not bad in himself with dementia. His worst symptom is his forgetfulness. He cannot, couldn’t make decisions re driving ( don’t drive) and he occasionally gets confused. But he will make his breakfast, makes drinks, gets dressed and potters in the garden. But re his Luekemia, COPD, Triple bypass, and his knackered knees in which they won’t operate on because of the above. Physically he is shot. He does 10 -15 mins a day on an exercise bike. So in a sense of how dementia can develop he is probably 3/10. You just have to keep an eye on him.
Me mum will get outta bed like yesterday when I called round after golf and she says” have you made me a drink”. So in a sense me mum has not got it bad, but she will in the future. Yesterday when I went round she said “ Will you drop me off at Tesco as your dad only has 1 1/2 bottles of red wine” . Now in the past I would have took her and taken her home. Yesterday I dropped her off and said cheerio. She said to me dad “ you’re not coming” before we left. Now don’t get me wrong. I was passing Tesco but had three dozen jobs to do when I got home inc picking up Layla from skool at 4.30. But I have just thought
“ arseholes mum, if you can go on a cruise you can get back from TESCO in a taxi”.
Re Holidays. Me mum has three opportunities of free holidays, my brothers static at Mablethorpe, my sisters lodge at Tallington lakes for the last five years, and a holiday cottage on the south coast in a gorgeous town. They are available anytime. She is not bothered.
A few months ago, me dads sister in law, my auntie, his now dead brothers wife came over and we had a fantastic meal. Oh the promises of keeping in touch. A Couple of weeks ago it was my aunties birthday. I asked me mum if she had called her and said happy birthday. She said” no, she don’t ring here and make the effort so I don’t ring her”. I asked when she last called my auntie. She couldn’t remember. So I told her “ is my auntie supposed to ring all her friends on her birthday so they can congratulate her”. She never responded. Bottom line, she don’t keep in touch with any of her friends
She called me on July 13th and asked me to do her a job. I said “ did you know it was Missis Ts birthday yesterday”. She had forgot for the second year running. I was bloody seething. Missis T Reckons my attitude has changed since that day. It hasn’t it has changed since she spoke to the dementia support worker and I realised she was being manipulative.

 

[clubchamp98]

Don't underestimate the harm that living full-time does to a dementia sufferer's partner's own mental health.
With little experience of dementia ourselves, it was only with hindsight that we realised Dad had been covering up and dealing with Mum's dementia on his own. It almost destroyed him. A friend who's been though it all told us later that it's actually the partner who needs the support rather than the sufferer.
Dad's got dementia himself and is in a care home now. I speak to him every day for 5 minutes and spend one day a week with him and it's taking its toll on my nerves. I can only imagine how stressful it must be taking care of a partner at home.
Not criticising or judging anyone - it's brutal on all concerned.

Yes my dad was carer for my mum.
But I found he was a major problem as well.
Got a social worker to look for help to make mums life easier but dad just said “ no” to everything.
He had the final say it was very frustrating when he then started complaining he was knackered and ended up in hospital himself.

 

[SwingsitlikeHogan]

@Tashyboy and others on this discussion…I hear and feel your pain…your frustration, irritation and anger…and your despair. I too have had such difficult situations to deal with over the last three years…with my MiL and two BiLs.

With one BiL (my sister’s husband) I have managed to come to terms with what he did and how he so very badly hurt my family, close and wide. With my MiL I now realise how much we were judging her by her words and actions, yet we now realise that we were misjudging her…little did we know of what she was coping with out of our sight.

And with my other BiL (wife’s brother) - over the last couple of years me and my Mrs have been judging him very harshly…his behaviour to his mum and us has been awful - but how do we feel today with him in hospital very seriously ill, with a condition he’s been struggling with these last three years. We feel guilty - who are we to judge?

In all three cases we (myself certainly in all) have come to terms with the situations and regained a level of peace of mind - and we need that…we don’t need to have the behaviours, real or judged, living in our heads rent free. And how have we done this?…largely through forgiveness.

To forgive those who have hurt you is difficult, it can be very, very difficult. But it’s not excusing or exonerating their behaviour…it’s coming to an understanding that we do not know what drives their thinking and behaviour, and not being judgemental - rather accepting that we cannot change others. Through forgiving I (we) have been able to put past thoughts truly behind us, to help and support today and going ahead - as best we can.

This Mayo Clinic article on Forgiveness may help. I hope so.

Why is it so easy to hold a grudge?

Forgiveness and letting go can lead to healing and peace.

www.mayoclinic.org

 

[HomerJSimpson]

So sad to see "Syd" Lawrence with MND. https://www.bbc.co.uk/sport/cricket/articles/c93p8ex3503o

 

[Robster59]

So many things in the above threads that resonate. The video brought tears to my eyes as it does highlight the effects on people going through dementia, and the impact and pain it causes on those having to deal with their loved ones going through it.

@RichA - You are totally right in the impact it has on those having to handle it. It affected my missus and I don't think she's ever been 100% right ever since. The mental strain can be immense. And the same for my Brother who looked after my Mum. Again, he was offered help but refused it as he believed he could do it all himself. I knew he couldn't and so did our family, and I see him now and it's wrecked him.

@Tashyboy - This is so hard for you as you are trying to do your best but, by the sound of it, your Mum is almost in denial and will use whatever means she can to get what she wants. I think you and your siblings need to get together and make sure you all sing from the same hymn sheet to stop your Mum playing one off against the other, and then all of you speak to the Social Worker to ensure she understands that you are all of one mind. It is so easy to get yourself worked up and stressed about these things. I can fully understand you just want to stand back, but the emotional blackmail that people can use in these situations can be really difficult, and they don't care about the impact it has on you and others, as long as they get their way.
Out of interest, does the insurance company know the full extent of all illnesses associated with your Mum and Dad? If she has not declared everything, then if anything happens the insurance could become void. And by ensuring everything is declared, it may make it prohibitively expensive for your Mum to actually afford the insurance for travelling overseas.

My thoughts are with you both, and anyone else who is going through this.
Letting your feelings out to friendly strangers on a forum such as this I found to be very helpful.

 

[SwingsitlikeHogan]

So many things in the above threads that resonate. The video brought tears to my eyes as it does highlight the effects on people going through dementia, and the impact and pain it causes on those having to deal with their loved ones going through it.

@RichA - You are totally right in the impact it has on those having to handle it. It affected my missus and I don't think she's ever been 100% right ever since. The mental strain can be immense. And the same for my Brother who looked after my Mum. Again, he was offered help but refused it as he believed he could do it all himself. I knew he couldn't and so did our family, and I see him now and it's wrecked him.

@Tashyboy - This is so hard for you as you are trying to do your best but, by the sound of it, your Mum is almost in denial and will use whatever means she can to get what she wants. I think you and your siblings need to get together and make sure you all sing from the same hymn sheet to stop your Mum playing one off against the other, and then all of you speak to the Social Worker to ensure she understands that you are all of one mind. It is so easy to get yourself worked up and stressed about these things. I can fully understand you just want to stand back, but the emotional blackmail that people can use in these situations can be really difficult, and they don't care about the impact it has on you and others, as long as they get their way.
Out of interest, does the insurance company know the full extent of all illnesses associated with your Mum and Dad? If she has not declared everything, then if anything happens the insurance could become void. And by ensuring everything is declared, it may make it prohibitively expensive for your Mum to actually afford the insurance for travelling overseas.

My thoughts are with you both, and anyone else who is going through this.
Letting your feelings out to friendly strangers on a forum such as this I found to be very helpful.

Just on this one point (though I agree and feel all the rest)…as this is my brother-in-law.

My Mrs and I have come to understand that his behaviour is that of a narcissist. That sounds terrible…but it explains a lot about his behaviour over the last two decades, not just the last few years - possibly much longer. And now that we recognise that he seems to suffer from this mental illness/condition acceptance, and subsequently forgiveness, have been easier and possible.

 

[Tashyboy]

So many things in the above threads that resonate. The video brought tears to my eyes as it does highlight the effects on people going through dementia, and the impact and pain it causes on those having to deal with their loved ones going through it.

@RichA - You are totally right in the impact it has on those having to handle it. It affected my missus and I don't think she's ever been 100% right ever since. The mental strain can be immense. And the same for my Brother who looked after my Mum. Again, he was offered help but refused it as he believed he could do it all himself. I knew he couldn't and so did our family, and I see him now and it's wrecked him.

@Tashyboy - This is so hard for you as you are trying to do your best but, by the sound of it, your Mum is almost in denial and will use whatever means she can to get what she wants. I think you and your siblings need to get together and make sure you all sing from the same hymn sheet to stop your Mum playing one off against the other, and then all of you speak to the Social Worker to ensure she understands that you are all of one mind. It is so easy to get yourself worked up and stressed about these things. I can fully understand you just want to stand back, but the emotional blackmail that people can use in these situations can be really difficult, and they don't care about the impact it has on you and others, as long as they get their way.
Out of interest, does the insurance company know the full extent of all illnesses associated with your Mum and Dad? If she has not declared everything, then if anything happens the insurance could become void. And by ensuring everything is declared, it may make it prohibitively expensive for your Mum to actually afford the insurance for travelling overseas.

My thoughts are with you both, and anyone else who is going through this.
Letting your feelings out to friendly strangers on a forum such as this I found to be very helpful.

To be honest Robster and to put it as bluntly as possible. My eldest Brother and sister don’t give a toss. My bro lost his wife in a motorcycle accident ( that’s another long story where posts of wtfs come into it. He is cracking on with life, a life that don’t involve mum and dad. He has actually told me that when mum and dad have passed away he will personally thank me and Missis T for all we have done. I have told him our younger bro has done a lot as well. Elder Bro has said “ I cannot stand going round because of all the crap I had to deal with re losing my wife, I listen to me mum and think WTF am I doing here”.
My sister. Again she thinks exactly the same. Her and my elder brother are two peas in a pod and talk more together.

Re insurance and Holidays. Quite frankly I could scream. My mums mantra is. “ if anything happens to me on holiday, the insurance company will look after your dad” Where the hell she gets that from I don’t know. He don’t even know how to open a flip phone, never mind dial a number. Spoke to me brother today in the golf course, he walked with us whilst we played. He looked at me quite sad and said” went to me mums last night, me dad looks knackered and old”.
As far as I am aware, the insurance company knows me mum and dads ailments. And me mum moans like the clappers about the cost. But I have to remind her that the last claim on the insurance was because of her. She had Gall stones and had to have her gall bladder removed so the holiday had to be cancelled. Guess who was the mug that had to chase all that up to re over the cost of the holiday. It took 3 months and the threat of going to the insurance ombudsman. It wasn’t until I spoke to Bolsover cruise who were brilliant that it got sorted. I told me mum Bolsover cruise help to sort it and to remember that in future. So guess who she has booked this cruise with. P and O direct.

I could go on and on, and SILH talks about forgiveness but it’s hard to talk about forgiveness when someone is extracting the urine. Me and Missis Tash who has been an absolute Trojan went through purgatory with her Father ( and Mother). We kept my mum in the loop with everything that went off. We felt it may give her an insight. For me it was a massive learning curve, for missis T it just seemed another day at work but this time it was her mum and dad. One day we was at a pub taking out my mum and dad. Missis Ts phone rang when we were coming home.It was on hands free in the car, her mother was screaming “ he’s hit me, he’s hit me”. Missis T said “we are on our way, we will be 15 minutes”. My mother said “ don’t drop us off we will come with you”. She wasn’t bothered about MIL. She just wanted to see what had gone off. We got to in laws and FiL had calmed down. He had “ come out of the dementia fog cloud” and was full of remorse. A couple of hours later me dad who at this time had been diagnosed with early dementia rang us up and asked if everyone was ok. Me Mum was in the background shouting “ did he hit her, did he hit her”. I was bloody seething. And there in lies the problem with me mum. It’s not about learning and understanding Dementia and Alziehmers. It’s about gossip and using me dad to get her way.

Last weekend I bought me dad 3 books re Belle Vue, Rochdale and Manchester. I knew me dad would love them, plus he can keep reading them. She rang today and said “ them books are great, we have read them and you can have them back”. No mum keep them and me dad can read them again like he has not seen them before. She still don’t get it.