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Dementia infiltrating all of life

Splashing About

Registered User
Oct 20, 2019
434
I saw this theme posted elsewhere and it resonated with me.

Many of my conversations with friends, colleague and family are around the situation. Before she went in to NH my weekends were all full of what crisis or problems had arisen. Midweek evenings were a juggle of what needed to be done, visiting and Tetris style slotting it all into a tight timeframe. I felt like I was holding my breath waiting for a phone call at work....frightened to book my diary “what-if”. On trains or car journeys getting crisis calls and deciding whether to ditch work and return or manage from afar. Career choices changed because I knew I couldn’t take on extra responsibilities. I wonder if I can carry on working at all.

Practicalities of considering financial consequences: do we fund another hour a day (£600 a month) or cope? Will we end up selling the house to fund care?

Emotional challenges....is my mum distressed, depressed, angry...is her behaviour harming my dad? Now I spend a lot of time worrying how she feels (she looks distressed sometimes and mostly agitated) analysing our past relationship when she turns on me. My immediate family relationship because I’m so focused anywhere other than on my family. Facing the inevitable end result and finding yourself hoping it’s not years away. Guilt. Wondering if I’ll get dementia and will my children have this experience. (Laughing as I recall my eldest firmly telling me she will not look after me.) Guilt at wanting to go on holiday and not have this gnawing worry.

It felt like a creeping fog that landed on me slowly and I think has changed me forever. The different phases we went through, different challenges - as fast as you thought you’d reacted, adapted, accepted one new normal...another horrible phase looms.

DTP is a lovely place to talk with others who get it.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,771
Kent
Yes it does take over our lives and affect all our relationships.

I don`t know a better way and have yet to find anyone who does.

It felt like a creeping fog that landed on me slowly and I think has changed me forever.
Someone likened the after affects of caring for a person with dementia as PTSD.
 

Splashing About

Registered User
Oct 20, 2019
434
@Grannie G I texted a friend the other day after a particularly difficult session bathing mum and said I was traumatised. I can’t say why, because uttering what she said and did feels like a betrayal however it was traumatising (emotionally and on a disgust level) and hard to process. Not being able to say it adds to that feeling of trauma. My friend is an ex district nurse and I just poured it all out knowing she’d understand, not repeat it and felt heaps better for sharing.
 

Cat27

Volunteer Moderator
Feb 27, 2015
11,602
Merseyside
I think it does change us forever. I’m 3 years on from my Dad dying I still feel the effects of caring.
 

Palerider

Registered User
Aug 9, 2015
1,934
North West
watkin.observer
I think I completely agree with you @Splashing About, and even when we know they are in the right place being cared for we go through a range of emotions. I think it has certainly changed me, I don't know yet what lasting effect this will have but time will tell.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Aged mother was really on the ball this morning when we spoke, she said I don’t want you to become run into the ground like I was looking after my parents. It made me old before my time.
Gulp!
 

TNJJ

Registered User
May 7, 2019
1,727
cornwall
Aged mother was really on the ball this morning when we spoke, she said I don’t want you to become run into the ground like I was looking after my parents. It made me old before my time.
Gulp!
Bless her.She does sound like she was on the ball. What a nice caring thing to say!
 

Lladro

Registered User
May 1, 2019
123
I saw this theme posted elsewhere and it resonated with me.

Many of my conversations with friends, colleague and family are around the situation. Before she went in to NH my weekends were all full of what crisis or problems had arisen. Midweek evenings were a juggle of what needed to be done, visiting and Tetris style slotting it all into a tight timeframe. I felt like I was holding my breath waiting for a phone call at work....frightened to book my diary “what-if”. On trains or car journeys getting crisis calls and deciding whether to ditch work and return or manage from afar. Career choices changed because I knew I couldn’t take on extra responsibilities. I wonder if I can carry on working at all.

Practicalities of considering financial consequences: do we fund another hour a day (£600 a month) or cope? Will we end up selling the house to fund care?

Emotional challenges....is my mum distressed, depressed, angry...is her behaviour harming my dad? Now I spend a lot of time worrying how she feels (she looks distressed sometimes and mostly agitated) analysing our past relationship when she turns on me. My immediate family relationship because I’m so focused anywhere other than on my family. Facing the inevitable end result and finding yourself hoping it’s not years away. Guilt. Wondering if I’ll get dementia and will my children have this experience. (Laughing as I recall my eldest firmly telling me she will not look after me.) Guilt at wanting to go on holiday and not have this gnawing worry.

It felt like a creeping fog that landed on me slowly and I think has changed me forever. The different phases we went through, different challenges - as fast as you thought you’d reacted, adapted, accepted one new normal...another horrible phase looms.

DTP is a lovely place to talk with others who get it.
Thank you for sharing this - It resonated so much with me too. Isn't it weird that just how sharing things like this through the forum anonymously can help? Before I had to deal with my wife's dementia, I really had no idea that platforms like this existed , let alone actually were a vital source of solace for others. Thank you x
 

myss

Registered User
Jan 14, 2018
441
I saw this theme posted elsewhere and it resonated with me.

Many of my conversations with friends, colleague and family are around the situation. Before she went in to NH my weekends were all full of what crisis or problems had arisen. Midweek evenings were a juggle of what needed to be done, visiting and Tetris style slotting it all into a tight timeframe. I felt like I was holding my breath waiting for a phone call at work....frightened to book my diary “what-if”. On trains or car journeys getting crisis calls and deciding whether to ditch work and return or manage from afar. Career choices changed because I knew I couldn’t take on extra responsibilities. I wonder if I can carry on working at all.
This first paragraph is how I feel right now. Today is one of a couple days where I don't work or do caring but a parent/mature student, it still means my 'days off' can be as manic as when I'm working.

I'm an open person so when people asked how things are, I would give the honest answer and then realised all I mostly spoke about is how I cared for my parents (mum also ill but not with dementia) and how I longed for my days off due to how tired I am.

Although I have some friends, my phone has been quiet at weekends. I don't blame them tbh but it's opened my eyes that I cannot just be existing like this - sort of how my dad has now delcined to - but must try in some small way to live in to its best.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
This first paragraph is how I feel right now. Today is one of a couple days where I don't work or do caring but a parent/mature student, it still means my 'days off' can be as manic as when I'm working.

I'm an open person so when people asked how things are, I would give the honest answer and then realised all I mostly spoke about is how I cared for my parents (mum also ill but not with dementia) and how I longed for my days off due to how tired I am.

Although I have some friends, my phone has been quiet at weekends. I don't blame them tbh but it's opened my eyes that I cannot just be existing like this - sort of how my dad has now delcined to - but must try in some small way to live in to its best.
Good time friends! I had quite a few! But to be honest I don’t want just good time friends, I want those that when the going gets tough step up to the plate! That’s true friendship.

maybe the old adage “ you can count your true friends on the fingers of one hand is true!” but needs updating in plus those virtual true companions on TP!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Bless her.She does sound like she was on the ball. What a nice caring thing to say!
I know,a real lucid moment!
Really looking forward to my visit today. Hopefully more cuddles & nice mother daughter time!

might make OH take me as I’m starting to pick up from latest M.E flare up & want to continue improving! Asking for help & then accepting it - oh my is that an upward incline in my learning curve I see!!!!
 

northumbrian_k

Registered User
Mar 2, 2017
1,038
Newcastle
My wife has been in her care home for almost 6 months yet dementia is still at the forefront of my mind. I have a good set of friends in the cycling and greyhound communities and several have been very supportive when I have needed it most. I'm not the same person that I was before dementia took hold. I am more emotional but in some ways I am stronger. I have managed to wrestle most of my daily life away from its grip. I am conscious when meeting others that talking about dementia is not on their list of favourite things to do, so I try to limit what I say even when sometimes the message is positive. I always have my friends on DTP and I know that they understand how much life is changed by dementia, inexorably and permanently, both for the person affected and for those who care for them.
 
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Jaded'n'faded

Registered User
Jan 23, 2019
889
High Peak
@Splashing About - my mum died last week and I spent 3 years doing the caring, though she was in a CH. (Plus several years before that trying to manage her from a distance.) I realise my 'sentence' was much less and far easier than others and for that I consider myself fortunate.

But what you say really resonates with me. I put my life completely on hold for those 3 years, panicked every time the phone rang, thought of little else but dementia. I too questioned my previous relationship with my mother, felt guilt that I could have/should have done more, and have wondered (too often!) if I will get dementia too, as mum and her mother did.

It has definitely changed me forever and, if I'm honest, probably not in a good way. :(
 

Splashing About

Registered User
Oct 20, 2019
434
Some very sad answers. I’ve been offered a carers assessment. I’ve barely got time for it but a few weeks ago felt like I was having a breakdown....nothing dramatic, just crying all the time and feeling like I couldn’t work ...ever. I was offered it, refused on basis of lack of time but she sent me an invite by post with details of what they offer including 6 sessions of counselling. For all the reasons listed by all of you I’m going to accept it and deal with how I feel.

Is 6 sessions enough???:D
 

myss

Registered User
Jan 14, 2018
441
@Splashing About - my mum died last week and I spent 3 years doing the caring, though she was in a CH. (Plus several years before that trying to manage her from a distance.) I realise my 'sentence' was much less and far easier than others and for that I consider myself fortunate.

But what you say really resonates with me. I put my life completely on hold for those 3 years, panicked every time the phone rang, thought of little else but dementia. I too questioned my previous relationship with my mother, felt guilt that I could have/should have done more, and have wondered (too often!) if I will get dementia too, as mum and her mother did.

It has definitely changed me forever and, if I'm honest, probably not in a good way. :(
My condolences to you @Jaded'n'faded
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Some very sad answers. I’ve been offered a carers assessment. I’ve barely got time for it but a few weeks ago felt like I was having a breakdown....nothing dramatic, just crying all the time and feeling like I couldn’t work ...ever. I was offered it, refused on basis of lack of time but she sent me an invite by post with details of what they offer including 6 sessions of counselling. For all the reasons listed by all of you I’m going to accept it and deal with how I feel.

Is 6 sessions enough???:D
oh my lovely you really are at your limits, crying & the panicky feelings Keep the appointments but also make good up s with your GP. It’s difficult times & you need to have some help . Personally I’m on antidepressants & find them incredibly helpful - not a miracle cure but it helps
 

daveyshadow

Registered User
Jan 14, 2015
38
Good post, and I agree with everything said, it infiltrates everywhere and yes that feeling in the pit of the stomach when the phone goes, and the inability to EVER switch off. With this GE happening we really need to engage with any politicians we come across and point them to this site to try and get them to understand the sheer scale of the issues faced by everyone concerned. We the carers but also the PWD and the system that is just not fit for purpose.