Dementia

[gmm243]

This is very close to me at the minute. I first noticed my mum getting a little forgetful around 12 months ago and then she forgot my birthday which I couldn't care less about but she was always very clued in about even when I loved away there was always a card.

She has been diagnosed with dementia and yesterday I had to take her to the specialist for am appointment. He asked her 10 simple questions of which she managed to answer 3. She did not know what month it was, her birthday, the prime minister,  or what day it was. He gave her three words to remember and asked again in 2 minutes. She only remembered one and guessed another.  Thankfully she is not agitated with it but it is terribly hard to watch.

Mum is 79 and dad is 88 so a lot falls to him as I work full time. He is still driving but I help as much as i can. I only live a mile away so am pretty much on hand and call every evening. We have a friend who comes in twice a week to take her shopping etc which is a great help.

It's very hard to watch and I dread what the future holds for a lady who I always knew to be so bright and agile.  Now she just shuffles about slowly and is fairly hard to have a conversation with. Saying that, some days are better than others but the bad days are slowly outweighing the good ones.

[ditchman]

Very difficult reading.....my heart goes out to all of you........

[Wymondley]

Mungler, I can't add much to what's already been said, but having lost my father to this dreadful condition I offer you my utmost sympathy.

For you or anyone else facing this, there'll always be support, advice or just a "yes mate, I know" if you need to vent, here on pigeonwatch.

[39TDS]

2 hours ago, gmm243 said:

This is very close to me at the minute. I first noticed my mum getting a little forgetful around 12 months ago and then she forgot my birthday which I couldn't care less about but she was always very clued in about even when I loved away there was always a card.

She has been diagnosed with dementia and yesterday I had to take her to the specialist for am appointment. He asked her 10 simple questions of which she managed to answer 3. She did not know what month it was, her birthday, the prime minister,  or what day it was. He gave her three words to remember and asked again in 2 minutes. She only remembered one and guessed another.  Thankfully she is not agitated with it but it is terribly hard to watch.

Mum is 79 and dad is 88 so a lot falls to him as I work full time. He is still driving but I help as much as i can. I only live a mile away so am pretty much on hand and call every evening. We have a friend who comes in twice a week to take her shopping etc which is a great help.

It's very hard to watch and I dread what the future holds for a lady who I always knew to be so bright and agile.  Now she just shuffles about slowly and is fairly hard to have a conversation with. Saying that, some days are better than others but the bad days are slowly outweighing the good ones.

It sounds like I have dementia then.

 

Apologies for making light of it but what else can you do? It's tough on everyone, my Dad has it to varying degrees. Some days he isn't too bad but others it is worse. Fortunately it isn't distressing him as much as his current (long term) partner as she has to deal with it. As for remembering birthdays, he hasn't doe that for over 30 years!

Best of luck to you Mungler and to all that are going through similar, it is a cruel thing.

[shaun4860]

Worse thing about this awful disease is that the people that have it don’t know they have it.

Its the people that care have to suffer 

[Mungler]

9 hours ago, shaun4860 said:

Worse thing about this awful disease is that the people that have it don’t know they have it.

Its the people that care have to suffer 

Men and women are geared up differently; and the left will tell us we’re all the same and we can jump genders but it’s just not possible.

I’ve been amazed at how the wife has immediately become an elderly carer - she always seems to know what to do, say and how to deal with any situation.

We’ve been told you’re not to directly address any of the delusional aspects. I struggle with this but am learning to roll with it. When the MIL tells us the people in the photos lined up on the mantle piece are talking to her or that she doesn’t need her keys when she goes out because they’ll let her back in but recently they won’t open the front door for her (etc) my reaction is logic and ‘no, that’s not possible they’re photos not real people’ but the Mrs is immediately straight in with ‘no they can’t open the front door for you because they’ve been told not to, that’s why they won’t open the door for you and that’s why you need your keys…’.

Indeed, turns out the wife’s a natural at this stuff as I think 99% of women just are.

Anyways, it’s all a bit Jordan Peterson and probably why women are in the care sector and not people like me. 

Spoke to a client last night who has gone through this - he said it was gallows humour that got him through. 

[oowee]

I fear my Mum is going the same way. Took her to dinner with my son and daughter (32 and 30), after dinner she asked me who the chap was sitting next to me .

[Cranfield]

The changes in the patient can be very shocking.
My MIL was a sweet old lady, no swearing in front of her, she would even turn off a tv programme that was a bit near the knuckle.
With Alzheimer's disease she would use words I didn't know she knew, becoming argumentative and low key violent.
This really upset my wife and her sister.
When my wife told the doctor about this behaviour he said,  "she is no longer your mother, you must accept this and not get upset".
Because this illness makes no obvious physical change to the patient, it is difficult not to still see your mother in these circumstances.
Even the "good times" are hard, my MIL would often thank my wife for something she had done and say, "do you have a mother ?"
Heartbreaking.

[ditchman]

With ref' to what Mungler says.....

one of the most difficult things for a single carer is the communication with the patient....when you are on a 24/7 shift in order to communicate you have to put yourself on the same level as the patient....so as time goes on you talk like as if you have demenntia and you start to think like a dementia patient.......and i tell you what ...it screws your head in....mentally it becomes very very wearing....couple this with NEVER auging or disagreeing with what is said and agreeing and supporting the patient at all times regardless what is said and done is the way forward for a quiet life (sort of)

the anguish this causes is totally, mentally crippling......and then you have to do the house work ..cooking..washing shopping... ironing..washing the patient....without any help whatsoever

as said before this desease is a family killer ......the hairs go up on the back of my neck and my heart starts to palpatate as i write this..and it has been 3 years since her death.......

Edited November 8 by ditchman

[marsh man]

1 hour ago, ditchman said:

With ref' to what Mungler says.....

one of the most difficult things for a single carer is the communication with the patient....when you are on a 24/7 shift in order to communicate you have to put yourself on the same level as the patient....so as time goes on you talk like as if you have demenntia and you start to think like a dementia patient.......and i tell you what ...it screws your head in....mentally it becomes very very wearing....couple this with NEVER auging or disagreeing with what is said and agreeing and supporting the patient at all times regardless what is said and done is the way forward for a quiet life (sort of)

the anguish this causes is totally, mentally crippling......and then you have to do the house work ..cooking..washing shopping... ironing..washing the patient....without any help whatsoever

as said before this desease is a family killer ......the hairs go up on the back of my neck and my heart starts to palpatate as i write this..and it has been 3 years since her death.......

There are some horrible illnesses about and dementia must be towards the top of the leader board , thankfully I was never put in your position , on the forum we often have a little larf and chuckle together but reading your posts on caring for you late wife it was certainly no laughing matter and I am not sure I could had cooped as well as you did , you done your upmost and couldn't had done any more so you can hold your head up high , hopefully you can now start getting some of your life back and enjoy your free time . 

[ditchman]

23 minutes ago, marsh man said:

There are some horrible illnesses about and dementia must be towards the top of the leader board , thankfully I was never put in your position , on the forum we often have a little larf and chuckle together but reading your posts on caring for you late wife it was certainly no laughing matter and I am not sure I could had cooped as well as you did , you done your upmost and couldn't had done any more so you can hold your head up high , hopefully you can now start getting some of your life back and enjoy your free time . 

i might take up cooking 

[marsh man]

3 minutes ago, ditchman said:

i might take up cooking 

If you need any advice from the master chef then you know where I am    

[amateur]

My parents, in their late 70s at the time, moved in with my sister in a large London house that both families bought, at her request to help out with her children, and, probably, so that my sister could get a larger house. My two brothers and I were in broad agreement that it was a good idea, and that our sister could scoop any inheritance, as long as she looked after them.

She had many years of unstinting childcare, housework and shopping being done for her, whilst she worked.

Then Mother had a stroke at 90, rendering her non-compos mentis and immobile and Father, by then, was slowly slipping into dementia.

Sister sold the house, unequally split the proceeds and retired to the South Coast, putting the parents into private sheltered accomodation, some 5 miles away from where she had now moved.

We visited them regularly (140 mile round trip) and found that Father, who even before he had dementia, had only very basic domestic skills and wouldn't countenance carers, was turning the place into a pit and Mother was bedbound.

We asked whether or not our Sister had been in. "Oh yes, she's a good girl. Comes in regularly, but she is very busy". There was no evidence of any cleaning or cooking being done by her.

Then one day my wife and daughter went to visit, found Mother in septic shock, lying in her own waste and basically half dead.

We immediately got her into hospital and once that she had sufficiently recovered, found a plush care home close to us that would take both of them. Father didn't object, because he would be with Mum.

My elder brother and I, who lived locally were able, with our children and grandchildren, to visit them regularly.

Their money ran out 18 months later and they had to move to a perfectly acceptable, council approved home.

Mum lasted another two months and died next to Dad. He didn't realise that she was dead. Dad died peacefully three months later.

I haven't spoken to my sister since we moved them back here, but she lives well on the proceeds of their house sale.

[marsh man]

3 hours ago, amateur said:

My parents, in their late 70s at the time, moved in with my sister in a large London house that both families bought, at her request to help out with her children, and, probably, so that my sister could get a larger house. My two brothers and I were in broad agreement that it was a good idea, and that our sister could scoop any inheritance, as long as she looked after them.

She had many years of unstinting childcare, housework and shopping being done for her, whilst she worked.

Then Mother had a stroke at 90, rendering her non-compos mentis and immobile and Father, by then, was slowly slipping into dementia.

Sister sold the house, unequally split the proceeds and retired to the South Coast, putting the parents into private sheltered accomodation, some 5 miles away from where she had now moved.

We visited them regularly (140 mile round trip) and found that Father, who even before he had dementia, had only very basic domestic skills and wouldn't countenance carers, was turning the place into a pit and Mother was bedbound.

We asked whether or not our Sister had been in. "Oh yes, she's a good girl. Comes in regularly, but she is very busy". There was no evidence of any cleaning or cooking being done by her.

Then one day my wife and daughter went to visit, found Mother in septic shock, lying in her own waste and basically half dead.

We immediately got her into hospital and once that she had sufficiently recovered, found a plush care home close to us that would take both of them. Father didn't object, because he would be with Mum.

My elder brother and I, who lived locally were able, with our children and grandchildren, to visit them regularly.

Their money ran out 18 months later and they had to move to a perfectly acceptable, council approved home.

Mum lasted another two months and died next to Dad. He didn't realise that she was dead. Dad died peacefully three months later.

I haven't spoken to my sister since we moved them back here, but she lives well on the proceeds of their house sale.

Money is the root of all evil spring to mind , my father would never harm a fly or rob anyone of a penny and he used to say that as soon as a person die the Vultures would come after the pickings , how right he was .  MM

[oowee]

7 hours ago, ditchman said:

With ref' to what Mungler says.....

one of the most difficult things for a single carer is the communication with the patient....when you are on a 24/7 shift in order to communicate you have to put yourself on the same level as the patient....so as time goes on you talk like as if you have demenntia and you start to think like a dementia patient.......and i tell you what ...it screws your head in....mentally it becomes very very wearing....couple this with NEVER auging or disagreeing with what is said and agreeing and supporting the patient at all times regardless what is said and done is the way forward for a quiet life (sort of)

the anguish this causes is totally, mentally crippling......and then you have to do the house work ..cooking..washing shopping... ironing..washing the patient....without any help whatsoever

as said before this desease is a family killer ......the hairs go up on the back of my neck and my heart starts to palpatate as i write this..and it has been 3 years since her death.......

Total respect. I could not do it. 

[Keith 66]

My Dad got vascular dementia towards the end of his life & Mum was sharp as a pin until the morphine switched her off (bowel cancer).

But my inlaws both had & have dementia & my wife being nearest it fell to us to deal with most of it. Mil is now 94 & in a good care home, she does not know what planet she is on. Terrible to see.

Worse is a good friend whose wife has early onset dementia & is now in her mid 70's. We see them every few weeks for dinner either at their place or ours or at the club, anything to keep her in some sort of normality. Trouble is she tries to join in the conversation & its as if her mind has been totally scrambled, now she is getting violent & its only a matter of time before she has to go into care. If so the council will put a charge on their house & when they die it will go to pay for the care.

Homes are a lottery, Mil is in a good one & the staff are superb, it is a real home in every sense of the word. Get a bad one & its worse than you can imagine.

Dad  passed away in the geriatric ward at Lancaster, after a short illness, there were some terrible dementia cases in there & he called it the legion of the dammed.

Best of luck with whatever you do.

[39TDS]

Fair play to you Ditchy, you didn't half have a lot to deal with when your missus was bad. Tough beyond words and you did well.

So sorry for the rest that are going through it and I really do wish them all the best.

[Flashman]

Based on my Grandmother's final years with it.  

1. Keep MiL in her own home. Is it a bungalow, as stairs become difficult?

2. Get on to the Council. They provide visiting services, loan electric medical beds, wheelchairs, as that’s all cheaper than moving to a home  

3. Paying for home help to come in takes away the daily stress. Employ a couple of helpers direct to cover the core hours. Agencies are thieves. 

4. There’s no guilt in wishing it would end. We make people live longer, not better. 

[Penelope]

One has to conclude, that there is a lot to be said for AD; kinder all round.

My nan on my mum's side, had 6-7 years of this before passing at 93 in a home in early 2020.

[7daysinaweek]

Mungler

My heart goes out to you and it must be a very difficult time. 

My other halves grandfather who had fluctuating capacity with mixed dementia, lived on his own and started to take the occassional walks out, sounds similiar to your MIL. He lived alone in a nice bungalow and his garden was his passion. He did not take to carers in the home despite us trying, and however difficult the correct decision in the end, he went into a nursing home with a degree of initial reluctantly. We checked out few and found one which he appeared to slightly warm to,  the grounds were nice, they had several other residents who liked to garden and we arranged a morning for him to go and we were with him, then another day, and then we took him.

The move from his home in Darlington over a hundred miles away down to near us. All the family were concerned how he would take to the home as he had lived on his own for many years and had his very exact routines, he never looked back and loved it for the few years until he passed away.