I need advice for Mum & Dad

PVMM2010

New member
Sep 4, 2018
2
0
My name is Caz.

I’m feeling like I don’t know where to turn, and I’m hoping that perhaps someone here may be able to give me some sage advice.

Dad was diagnosed with subcortical vascular dementia starting around 5 years ago arising mostly from a series of strokes, TIAs and a heart attack. He is in denial of the dementia, refuses to acknowledge with the doctors that he’s ever been told about it and has gradually been getting worse in his symptoms over the years. At this point in time, he has a troubled short term memory, altough this is controlled by a calendar for dates and he can pretty much recall recent events, but he has many spaces in his longer term memories, for instance he forgets about operations hes had etc. His temperament has changed and he is cranky, depressed and moody and not a very nice person to know and has alienated pretty much all of his friends and family apart from his wife, myself and my husband.

His wife/my mum, has Altzheimers or a more traditional form of short term memory loss I guess, you would call it. She appears to be living sometime in the past, a few months behind us now and can not remember anything recent. My dad wrote off his car last week (he has finally given up driving thankfully as a result) and yet Mum had forgotten the incident within 5 minutes of the accident happening. Something so major and yet she couldn’t recall it.

The thing is Mum has developed a habit of humming quietly to herself, she loves classical music and I suspect that she is “listening” to orchestrated music in her head. While doing this she is happy in her own world, and I’ve noticed that she taps her hand along to her gentle tunes. Every so often though she will bang her hand on her legs as if the music is coming to an end, or maybe it’s the start of the 1812 overture (who knows?) but she hits her leg hard and seems quite happy in herself doing it. It’s been a bit of a joke between us, up until what I witnessed today!

I’d asked Mum if she would swap seats with me in their front room, (I was over visiting as I am going away for 5 days and wanted to talk to both of them). Mum was really reluctant to move into the chair closer to Dad, but I assumed it was because the chair I was sitting in looked out of the window where she loves watching the traffic go by (it still could be the reason). However, after she had moved into the new chair next to Dad, it was long before she started humming her tune and she was tapping out her notes and soon she let out three sharp bangs on her leg. Slap slap slap. To which my dad then stood up and slapped her three times really hard in her leg !

Harder than she had hit herself. She told him to get of and leave her alone and he sat down as I said to him that there was no need to slap Mum. Then Dad said well it interrupts my TV programs and it wakes me up when I’m sleeping!

Mum left the room at this point and I said to him that it was unlikely that Mum would stop slapping her leg and that it was part of her singing to herself. That it was part of her dementia and that she wasn’t doing it to annoy him. His reply was “well it might just discourage her a bit”. I was really shocked by his reply!

He then got up and walked out to use the bathroom.

I later asked Mum how often he slapped her and she said “No, he’s never slapped me and if he ever did it would be in an affectionate manner”

Mum and Dad were the sweetest couple ever, Dad would never have allowed anyone to harm Mum in anyway when I was younger and would be devastated if he realised what he was doing. I know it’s the dementia altering his perception but I’m at a loss as to what I should do now.

So, here I am. Asking for advice? Please there must be someone out there who can point me in the right direction?
 

carolynp

Registered User
Mar 4, 2018
569
0
My name is Caz.

I’m feeling like I don’t know where to turn, and I’m hoping that perhaps someone here may be able to give me some sage advice.

Dad was diagnosed with subcortical vascular dementia starting around 5 years ago arising mostly from a series of strokes, TIAs and a heart attack. He is in denial of the dementia, refuses to acknowledge with the doctors that he’s ever been told about it and has gradually been getting worse in his symptoms over the years. At this point in time, he has a troubled short term memory, altough this is controlled by a calendar for dates and he can pretty much recall recent events, but he has many spaces in his longer term memories, for instance he forgets about operations hes had etc. His temperament has changed and he is cranky, depressed and moody and not a very nice person to know and has alienated pretty much all of his friends and family apart from his wife, myself and my husband.

His wife/my mum, has Altzheimers or a more traditional form of short term memory loss I guess, you would call it. She appears to be living sometime in the past, a few months behind us now and can not remember anything recent. My dad wrote off his car last week (he has finally given up driving thankfully as a result) and yet Mum had forgotten the incident within 5 minutes of the accident happening. Something so major and yet she couldn’t recall it.

The thing is Mum has developed a habit of humming quietly to herself, she loves classical music and I suspect that she is “listening” to orchestrated music in her head. While doing this she is happy in her own world, and I’ve noticed that she taps her hand along to her gentle tunes. Every so often though she will bang her hand on her legs as if the music is coming to an end, or maybe it’s the start of the 1812 overture (who knows?) but she hits her leg hard and seems quite happy in herself doing it. It’s been a bit of a joke between us, up until what I witnessed today!

I’d asked Mum if she would swap seats with me in their front room, (I was over visiting as I am going away for 5 days and wanted to talk to both of them). Mum was really reluctant to move into the chair closer to Dad, but I assumed it was because the chair I was sitting in looked out of the window where she loves watching the traffic go by (it still could be the reason). However, after she had moved into the new chair next to Dad, it was long before she started humming her tune and she was tapping out her notes and soon she let out three sharp bangs on her leg. Slap slap slap. To which my dad then stood up and slapped her three times really hard in her leg !

Harder than she had hit herself. She told him to get of and leave her alone and he sat down as I said to him that there was no need to slap Mum. Then Dad said well it interrupts my TV programs and it wakes me up when I’m sleeping!

Mum left the room at this point and I said to him that it was unlikely that Mum would stop slapping her leg and that it was part of her singing to herself. That it was part of her dementia and that she wasn’t doing it to annoy him. His reply was “well it might just discourage her a bit”. I was really shocked by his reply!

He then got up and walked out to use the bathroom.

I later asked Mum how often he slapped her and she said “No, he’s never slapped me and if he ever did it would be in an affectionate manner”

Mum and Dad were the sweetest couple ever, Dad would never have allowed anyone to harm Mum in anyway when I was younger and would be devastated if he realised what he was doing. I know it’s the dementia altering his perception but I’m at a loss as to what I should do now.

So, here I am. Asking for advice? Please there must be someone out there who can point me in the right direction?
It’s interesting your mother did not want to sit next to your father. This suggests to me that at some level she knows he has slapped her before - but it also suggests that she has found a way to keep out of range.

Forgive me for commenting when I have no real advice to give. Others will respond more forcefully I am sure.

What’s in my mind is that you could so easily not have seen this happen and be none the wiser at this time. Otherwise they each seem ok together by and large. Would it be possible for you just to keep an eye on your mother, making sure she doesn’t have unexplained bruising and isn’t exhibiting signs of being frightened of your father?

Call me too non-interventionist but I’d be inclined to let this one go through to the keeper, myself. Part of life’s rich tapestry at this point? Your parents seem to be muddling along reasonably well together overall. Your father is unlikely to change his behaviour. Your mother seems to have worked out a way of staying out of reach.

At some point they may have to be separated but for now could you simply make a diary note for yourself, so you have a record in case of future need? I suppose you could advise their GP also in order to have another pair of eyes on the situation.

I just feel any intervention more than your rebuke to your father is likely to upset them both and the equilibrium they seem to have achieved for the time being.

Sorry not to be more helpful. I am sure others will have more to say.
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
My name is Caz.

I’m feeling like I don’t know where to turn, and I’m hoping that perhaps someone here may be able to give me some sage advice.

Dad was diagnosed with subcortical vascular dementia starting around 5 years ago arising mostly from a series of strokes, TIAs and a heart attack. He is in denial of the dementia, refuses to acknowledge with the doctors that he’s ever been told about it and has gradually been getting worse in his symptoms over the years. At this point in time, he has a troubled short term memory, altough this is controlled by a calendar for dates and he can pretty much recall recent events, but he has many spaces in his longer term memories, for instance he forgets about operations hes had etc. His temperament has changed and he is cranky, depressed and moody and not a very nice person to know and has alienated pretty much all of his friends and family apart from his wife, myself and my husband.

His wife/my mum, has Altzheimers or a more traditional form of short term memory loss I guess, you would call it. She appears to be living sometime in the past, a few months behind us now and can not remember anything recent. My dad wrote off his car last week (he has finally given up driving thankfully as a result) and yet Mum had forgotten the incident within 5 minutes of the accident happening. Something so major and yet she couldn’t recall it.

The thing is Mum has developed a habit of humming quietly to herself, she loves classical music and I suspect that she is “listening” to orchestrated music in her head. While doing this she is happy in her own world, and I’ve noticed that she taps her hand along to her gentle tunes. Every so often though she will bang her hand on her legs as if the music is coming to an end, or maybe it’s the start of the 1812 overture (who knows?) but she hits her leg hard and seems quite happy in herself doing it. It’s been a bit of a joke between us, up until what I witnessed today!

I’d asked Mum if she would swap seats with me in their front room, (I was over visiting as I am going away for 5 days and wanted to talk to both of them). Mum was really reluctant to move into the chair closer to Dad, but I assumed it was because the chair I was sitting in looked out of the window where she loves watching the traffic go by (it still could be the reason). However, after she had moved into the new chair next to Dad, it was long before she started humming her tune and she was tapping out her notes and soon she let out three sharp bangs on her leg. Slap slap slap. To which my dad then stood up and slapped her three times really hard in her leg !

Harder than she had hit herself. She told him to get of and leave her alone and he sat down as I said to him that there was no need to slap Mum. Then Dad said well it interrupts my TV programs and it wakes me up when I’m sleeping!

Mum left the room at this point and I said to him that it was unlikely that Mum would stop slapping her leg and that it was part of her singing to herself. That it was part of her dementia and that she wasn’t doing it to annoy him. His reply was “well it might just discourage her a bit”. I was really shocked by his reply!

He then got up and walked out to use the bathroom.

I later asked Mum how often he slapped her and she said “No, he’s never slapped me and if he ever did it would be in an affectionate manner”

Mum and Dad were the sweetest couple ever, Dad would never have allowed anyone to harm Mum in anyway when I was younger and would be devastated if he realised what he was doing. I know it’s the dementia altering his perception but I’m at a loss as to what I should do now.

So, here I am. Asking for advice? Please there must be someone out there who can point me in the right direction?


I think this is a really tricky situation. The time comes when a person with dementia of any kind is not capable of caring for themselves at a reasonable level. To have two people with dementia living together means that neither is really 'caring' for the other, once the disease has reached a certain stage.

If neither is capable of caring for the other, in your parents case, that means neither one of them is being cared for properly on a day to day basis.

Have they reached that stage with their respective diseases?

Are Social Services involved? Because sometimes a impartial view will bring realisation. You have been so close to this for so long that you are possibly accepting everything you see, whereas someone else might take one look at your parents and say that the situation is no longer tenable.

If you live too far away, or are working and cannot be there daily, perhaps involving a Care Agency would work. With a carer coming in a couple of times a day to perhaps see to meds or meals etc the general situation could be monitored.

I would hate to be alarmist, but you would not have come on TP if you were not really worried for your Mother's safety - I think you need to get some level of professional involvement. Why wait until Mum is showing any bruises? You don't want that for her. You would blame yourself.

Dementia in one parent is heart rending, but in both parents, you must be worried silly over them - you need to let someone else carry the can for you and that is the doctor, social services, or carers.

I am also aware you might get many differing solutions to this problem. I think there is no ideal solution - you have to do what feels 'right' to you and what you, knowing your parents best, feel happiest with.

Good Luck
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,806
0
Kent
Your father could have been mirroring your mothers behaviour in as your mother said `an affectionate manner` .

With both parents having different forms of dementia, communication between them might be severely compromised.

It`s worrying they are still living together without anyone there to monitor or smooth out possibly explosive situations and I don't really know how you can protect them from each other.

The Helpline might be able to give you more experienced advice. Try to contact them today.

National Dementia Helpline

0300 222 11 22

Monday to Wednesday 9am – 8pm

Thursday and Friday 9am – 5pm

Saturday and Sunday 10am – 4pm
 

Hazara8

Registered User
Apr 6, 2015
702
0
I think this is a really tricky situation. The time comes when a person with dementia of any kind is not capable of caring for themselves at a reasonable level. To have two people with dementia living together means that neither is really 'caring' for the other, once the disease has reached a certain stage.

If neither is capable of caring for the other, in your parents case, that means neither one of them is being cared for properly on a day to day basis.

Have they reached that stage with their respective diseases?

Are Social Services involved? Because sometimes a impartial view will bring realisation. You have been so close to this for so long that you are possibly accepting everything you see, whereas someone else might take one look at your parents and say that the situation is no longer tenable.

If you live too far away, or are working and cannot be there daily, perhaps involving a Care Agency would work. With a carer coming in a couple of times a day to perhaps see to meds or meals etc the general situation could be monitored.

I would hate to be alarmist, but you would not have come on TP if you were not really worried for your Mother's safety - I think you need to get some level of professional involvement. Why wait until Mum is showing any bruises? You don't want that for her. You would blame yourself.

Dementia in one parent is heart rending, but in both parents, you must be worried silly over them - you need to let someone else carry the can for you and that is the doctor, social services, or carers.

I am also aware you might get many differing solutions to this problem. I think there is no ideal solution - you have to do what feels 'right' to you and what you, knowing your parents best, feel happiest with.

Good Luck


Such a helpful response. But clearly a proper assessment is due for the sake of all parties. Dementia is complex enough in a one-to-one situation. But in both a mother and father, a genuine challenge and potential problems. Every 'odd' act of behaviour has a meaning in dementia. Even within the controlled environment of an EMI unit in a Care Home, I find it exhausting after several hours in 'communication' with residents. The domestic (at home) situation enhances all of that and beyond.
 

Prudence9

Registered User
Oct 8, 2016
478
0
@PVMM2010 Hi Caz, I'm so sorry, what a difficult and worrying situation for you.
I can't imagine the heartbreak and complications of coping with both parents with dementia.

I would be too worried to leave things as they are I think. Would it be possible to rig up a webcam or two that you could monitor via an app on your phone so that you can keep an eye on the situation whilst you ring round for advice?
(Sorry, I never had to do this so can't advise further on the technology).

You may have no cause for concern, but it rings a warning bell in me that your Mum wanted to avoid sitting close to your Dad and her "hostess mode" may have prevented her from trying to explain her fears.

I hope you call the helpline number that Grannie G provided, I feel you need help with this and do hope you receive it.
 

PVMM2010

New member
Sep 4, 2018
2
0
It’s interesting your mother did not want to sit next to your father. This suggests to me that at some level she knows he has slapped her before - but it also suggests that she has found a way to keep out of range.

Forgive me for commenting when I have no real advice to give. Others will respond more forcefully I am sure.

What’s in my mind is that you could so easily not have seen this happen and be none the wiser at this time. Otherwise they each seem ok together by and large. Would it be possible for you just to keep an eye on your mother, making sure she doesn’t have unexplained bruising and isn’t exhibiting signs of being frightened of your father?

Call me too non-interventionist but I’d be inclined to let this one go through to the keeper, myself. Part of life’s rich tapestry at this point? Your parents seem to be muddling along reasonably well together overall. Your father is unlikely to change his behaviour. Your mother seems to have worked out a way of staying out of reach.

At some point they may have to be separated but for now could you simply make a diary note for yourself, so you have a record in case of future need? I suppose you could advise their GP also in order to have another pair of eyes on the situation.

I just feel any intervention more than your rebuke to your father is likely to upset them both and the equilibrium they seem to have achieved for the time being.

Sorry not to be more helpful. I am sure others will have more to say.
@PVMM2010 Hi Caz, I'm so sorry, what a difficult and worrying situation for you.
I can't imagine the heartbreak and complications of coping with both parents with dementia.

I would be too worried to leave things as they are I think. Would it be possible to rig up a webcam or two that you could monitor via an app on your phone so that you can keep an eye on the situation whilst you ring round for advice?
(Sorry, I never had to do this so can't advise further on the technology).

You may have no cause for concern, but it rings a warning bell in me that your Mum wanted to avoid sitting close to your Dad and her "hostess mode" may have prevented her from trying to explain her fears.

I hope you call the helpline number that Grannie G provided, I feel you need help with this and do hope you receive it.


Hi,

I was thinking of perhaps doing this, but dad would never agree to it. However, I am fairly up to date on technology and Dad loves ‘Clocks” and ‘timekeeping’ and there is a cheap version of a webcam on Geek for £18 plus £10 Shipping. I think having looked at all the comments that I will ‘give them’ a gift of the clock and monitor the situation, and phone the dementia advice line today. I am so concerned about them both. They are the same two people who bought me up, but so vastly different as well. It’s so very hard to cope with.
Thank you for your kind comments, please keep your advice and comments coming, anything is welcome.
 

Georgina63

Registered User
Aug 11, 2014
973
0
HI @PVMM2010 \ Caz

I happened across your post today, and there are quite a lot of similarities with my situation a couple of years ago. Both parents have dementia and were at home together for a while (now in CH). At the time, I received brilliant advice and help from our local Alzheimer's Society, who kick started getting a social services assessment, which in turn got the help my parents needed at the time, though it was a very rocky road! It was a very fine between putting in place the right amount and level of care and accepting there were still risks involved. I think you will probably know when it no longer feels 'safe'. I found the whole situation very difficult, not least as it comes to a point where you are having to make key decisions on behalf of parents who are not very accepting of intervention! However, it worked for a while and allowed Mum and Dad to be together at home for as long as was manageable. I hope you are able to find a good solution. Georgina.
 

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