It's all my fault!

[Raspberry Ripple]

Working from home today around mom's first visit from a CPN. On arrival she told me the firemen had been out because she set the alarm off (checked with Telecare and no-one has been out), then asked why I made the house look untidy , I was only sitting there. I asked how it was untidy as it was tidy in lounge, she said bedroom was messy so I had to tell her I hadn't been upstairs yet. Then after the CPN had been (lies, lies and more lies from mom, she's perfectly fine, nothing wrong with her), she asked why I made her look stupid. It's ok though, getting used to it. She said she hadn't seen anything strange for 12 months, (first hospital admission was June), and that when she got up she put the fire on for 'them' and they sat in the front room mostly. Fire doesn't work either now, had to disable it. Small chat with CPN whilst mom was distracted by carer to add the truth

 

[DesperateofDevon]

Working from home today around mom's first visit from a CPN. On arrival she told me the firemen had been out because she set the alarm off (checked with Telecare and no-one has been out), then asked why I made the house look untidy , I was only sitting there. I asked how it was untidy as it was tidy in lounge, she said bedroom was messy so I had to tell her I hadn't been upstairs yet. Then after the CPN had been (lies, lies and more lies from mom, she's perfectly fine, nothing wrong with her), she asked why I made her look stupid. It's ok though, getting used to it. She said she hadn't seen anything strange for 12 months, (first hospital admission was June), and that when she got up she put the fire on for 'them' and they sat in the front room mostly. Fire doesn't work either now, had to disable it. Small chat with CPN whilst mom was distracted by carer to add the truth

Oh bless you, you must be emotionally wrung out. It’s awfully distressing- I am a very emotive person & deal well with issues then fall apart! Though at other times I have dissolved in tears & to my shame raised my voice when faced with plain ignorance of the issues dementia brings.
However difficult things are once help is in place - it does make a huge difference.

my mums much happier on her meds - it’s only taken 5 plus years of what felt like hell at the time! mum also has got used to the carers & likes the visits- this if a complete 360!!!
so breathe & keep posting lovely xx

 

[Lawson58]

This morning OH had a doctor's appointment to check his blood thinner meds but forgot to take his record book.

No prizes for guessing who got the blame. I have been blamed for everything over the years for things that have happened (like the car needing new tyres) and many things that have never happened ( such as stealing his car).

Mostly it's water off a duck's back. Except when I get blamed for his children's abysmal behaviour then it's on for young and old. A thick skin is handy but it's not impervious to everything.

 

[DesperateofDevon]

This morning OH had a doctor's appointment to check his blood thinner meds but forgot to take his record book.

No prizes for guessing who got the blame. I have been blamed for everything over the years for things that have happened (like the car needing new tyres) and many things that have never happened ( such as stealing his car).

Mostly it's water off a duck's back. Except when I get blamed for his children's abysmal behaviour then it's on for young and old. A thick skin is handy but it's not impervious to everything.

I got Dad changed over to another drug that’s self regulating- no clinics, or change in prescription depending on clotting rates etc. It has made life much easier

as for having a thick skin but not being impervious- as carers people forget their own needs very easily & dementia & its associated behaviour becomes normal. Putting the PWD needs & dealing with the issues consumes & it’s easier to ignore & neglect the emotions & exhaustion that can bring than try to address it.

So I am an emotive person who can become hypersensitive at times, if at my lowest points in dealing with dementia I appear overwrought & almost hysterical with frustration....... count yourself lucky that at that moment in time you are not me! As I myself don’t recognise me most days, the facade it on to face the world outside of my home can fool only those who really don’t want to see another’s true situation; I am not that good an actress !

My granny used to say “ sticks & stones can break your bones , but words can never hurt me” .......well that just proves that wisdom doesn’t always come with age

words penetrate deep & wound longer no matter how much you block out or rationalise - we are only human

 

[Dimpsy]

Does this ring any bells with you?
Over the last few weeks, we have noticed small changes in mum's behaviour.
Silly really, and not the least important, but we take note because her actions are not like my mum!

She had a torn page in her beloved word search book (she did it, forcing paper clips on), but she has been cross "and she knows who did it".
When I said she had done it, she denied and said it wasn't her.
Childlike, passing the blame onto someone else (I'm not going down the road of asking "well who did tear it mum"), but she rarely gets cross, she's even tempered and generally a happy soul, so we were taken aback to see her angry.

Apart from her atrocious memory, short term and increasingly long term, mum has been relatively stable, OH and I wonder if changes are afoot!

 

[DesperateofDevon]

Does this ring any bells with you?
Over the last few weeks, we have noticed small changes in mum's behaviour.
Silly really, and not the least important, but we take note because her actions are not like my mum!

She had a torn page in her beloved word search book (she did it, forcing paper clips on), but she has been cross "and she knows who did it".
When I said she had done it, she denied and said it wasn't her.
Childlike, passing the blame onto someone else (I'm not going down the road of asking "well who did tear it mum"), but she rarely gets cross, she's even tempered and generally a happy soul, so we were taken aback to see her angry.

Apart from her atrocious memory, short term and increasingly long term, mum has been relatively stable, OH and I wonder if changes are afoot!

Different dementias effect different parts of the brain. The only way to truly be sure of what’s really going on is by your Mum having a C/T scan or MRI, then behaviour & patterns become more understandable.

Keep a record of all of the changes - it can be vital in ensuring medication is appropriate.
Changes are always a foot with dementia it’s a greedy disease at times. take care
X

 

[Lawson58]

I got Dad changed over to another drug that’s self regulating- no clinics, or change in prescription depending on clotting rates etc. It has made life much easier

as for having a thick skin but not being impervious- as carers people forget their own needs very easily & dementia & its associated behaviour becomes normal. Putting the PWD needs & dealing with the issues consumes & it’s easier to ignore & neglect the emotions & exhaustion that can bring than try to address it.

So I am an emotive person who can become hypersensitive at times, if at my lowest points in dealing with dementia I appear overwrought & almost hysterical with frustration....... count yourself lucky that at that moment in time you are not me! As I myself don’t recognise me most days, the facade it on to face the world outside of my home can fool only those who really don’t want to see another’s true situation; I am not that good an actress !

My granny used to say “ sticks & stones can break your bones , but words can never hurt me” .......well that just proves that wisdom doesn’t always come with age
words penetrate deep & wound longer no matter how much you block out or rationalise - we are only human

Regarding the blood thinners - we had this discussion with both OH's GP and cardiologist and it was decided that it was better to keep him on the warfarin, mainly because it can be reversed with an infusion of vitamin K quickly which can't be done with the alternative.

With his medical history, it was thought to be a better option as he has had a number of emergencies in the last few years.

Does this ring any bells with you?
Over the last few weeks, we have noticed small changes in mum's behaviour.
Silly really, and not the least important, but we take note because her actions are not like my mum!

She had a torn page in her beloved word search book (she did it, forcing paper clips on), but she has been cross "and she knows who did it".
When I said she had done it, she denied and said it wasn't her.
Childlike, passing the blame onto someone else (I'm not going down the road of asking "well who did tear it mum"), but she rarely gets cross, she's even tempered and generally a happy soul, so we were taken aback to see her angry.

Apart from her atrocious memory, short term and increasingly long term, mum has been relatively stable, OH and I wonder if changes are afoot!

This reminds me of when we started having puddles in the bathroom every morning at about the time OH was diagnosed. Of course, he denied it completely even though I never used his bathroom. No, no, no, couldn't have been him. He used to get up to go to the toilet during the night and forgot to turn the light on so didn't aim straight. That problem was easily solved but other things like that happen occasionally.

 

[DesperateofDevon]

Regarding the blood thinners - we had this discussion with both OH's GP and cardiologist and it was decided that it was better to keep him on the warfarin, mainly because it can be reversed with an infusion of vitamin K quickly which can't be done with the alternative.

With his medical history, it was thought to be a better option as he has had a number of emergencies in the last few years.

This reminds me of when we started having puddles in the bathroom every morning at about the time OH was diagnosed. Of course, he denied it completely even though I never used his bathroom. No, no, no, couldn't have been him. He used to get up to go to the toilet during the night and forgot to turn the light on so didn't aim straight. That problem was easily solved but other things like that happen occasionally.

it’s swings & roundabouts really all the time. It sounds as if Dads much further down dementias pathway; we have had the discussion on several occasions now with doctors & paramedics of quality of life over quantity of life. A difficult conversation to have & hear but the PWD bests interests must be met; & sadly there comes a time when hard decisions have to be made sometimes. It helps that while mental capacity is in place that a TEP form is filled in.

it’s still hard decisions even with medical advice.

as things progress an open mind to medical options is always good, when Dad struggled to get out of bed to get to appointments ( I took him to the INR clinics etc) that was the indicator that his needs had changed & so I had his medication changed to ensure Dad wasn’t distressed with the upheaval appointments brought to his already confused mind.

 

[Lawson58]

it’s swings & roundabouts really all the time. It sounds as if Dads much further down dementias pathway; we have had the discussion on several occasions now with doctors & paramedics of quality of life over quantity of life. A difficult conversation to have & hear but the PWD bests interests must be met; & sadly there comes a time when hard decisions have to be made sometimes. It helps that while mental capacity is in place that a TEP form is filled in.

it’s still hard decisions even with medical advice.

as things progress an open mind to medical options is always good, when Dad struggled to get out of bed to get to appointments ( I took him to the INR clinics etc) that was the indicator that his needs had changed & so I had his medication changed to ensure Dad wasn’t distressed with the upheaval appointments brought to his already confused mind.

OH had massive open heart surgery 15 years ago and since then, there's been a heart attack, a cardiac arrest, 3 hernia operations, prostate treatment, internal bleeds, cellulitis, nose bleeds requiring hospitalization and it goes on and on. It would be nice not to have the frequent checks but that's how it goes. His AD is progressing very slowly but I believe his physical health is a much bigger issue for us and his cardiac arrest certainly made us face questions for the future.

 

[DesperateofDevon]

OH had massive open heart surgery 15 years ago and since then, there's been a heart attack, a cardiac arrest, 3 hernia operations, prostate treatment, internal bleeds, cellulitis, nose bleeds requiring hospitalization and it goes on and on. It would be nice not to have the frequent checks but that's how it goes. His AD is progressing very slowly but I believe his physical health is a much bigger issue for us and his cardiac arrest certainly made us face questions for the future.

I really do sympathise Dad has had poor physical health since 1991, the medication doctor & hospital appointments got to much for him. Now the medication this week is down from 11 tablets to 2. Comfort care is the name of the game now! The morphine patches & oromorph should help- if we can only get the home on board or get Dad out into palliative care soon life will become easier.....

 

[JoannePat]

When my mum was getting the first signs we went to the GP together, when we came out she completely let me have it - "how dare I show her up?", "what did I think I was doing?", "I'm her family and should stick up for her?". She went completely mad at me and my dad. She even drove home, when the dr had told her no more driving.

Two months later she had a massive stroke, and 9 months after that she is now in a care home.

If it is any consolation they don't know, we take it to heart because we are human and this is our parents/partners/loved ones.

We carry guilt, heart break and every emotion under the sun. We love them, we get frustrated, we want them back.............

thinking of you

Jx