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Carer's strategies for diffusing frustration

Hazara8

Registered User
Apr 6, 2015
547
Dear @Hazara8

Thank you for posting these thought provoking words. As you say in the end we have to look within, start to open the pages of our own book, to deal with what we have to externally, in a caring role. Learn to work around the invisible elephant in our loved ones life.

An old saying keeps coming back to me, first related to me in a very sad moment in my life. “They were the best of times, they were the worst of times”. In the caring role clearly we know what the worst of times are. But in overcoming problems, supporting our loved one, developing inside ourselves, we know a little more about the best of times. At another level yes sadness what a cruel illness is doing to our loved one. But conversely we are saddened because we knew and loved that person when they were at their best. I always had a good relationship with my mum. Caring must be so much harder where the relationship with the PWD was strained before the illness. For those individuals I have a very high regard when they take on a caring role at any level.

Thank you again for a thoughtful post. Best wishes for the future, continuing to turn the pages of your own book.
Thank you for those kind words. And good wishes to you also.
 

Hazara8

Registered User
Apr 6, 2015
547
How beautifully and eloquently put Hazara8... not many people are gifted with the ability to put such experiences into words and yet when you do I suspect you speak for a lot of people and give voice to their experience and feelings. Thank you
Thank you. I am continuously humbled by the accounts related on this forum. So many unsung and devoted Carers who by their compassion demonstrate the very best in the human condition.
 

Arty-girl

Registered User
Jun 29, 2020
14
Difficult becomes an understatement of considerable proportions when we apply the word to dementia. Any abnormality poses a challenge, some moreso than others. A personal challenge has to be confronted directly at the end of the day, if it is to be clearly addressed, despite any peripheral advice. One is referring to psychological challenges here. I am afraid that all the books in the world cannot open the pages of your own book. This person has in his youth read everything from Zen through Buddhism and tasted many theosophical texts and all manner of " mind expansion" writings and Yoga and so on. Nothing actually means anything when you are reliant on an outside source, because when the source is no longer there, you are lost, alone and with just yourself. Then, that is when one might discover what you truly are. In caring for someone very close, where the relationship actually feels so attached that everything that takes place registers psychologically, then it is of no surprise when any disruption in that relationship has a marked if not profound effect on you. Dementia is alike a third party infiltrating that relationship. It changes the hitherto ' normality' of that relationship and it does so through the body and soul of the one who you know and love and understand -- and changes everything without any consultation of either you or most significantly, the one whom it now inhabits. So, it then requires recognition of that imposter in all its guises. Difficult. The sudden snappy outburst or glowering expression which invites an instinctive reaction - is it authentic? Or is it the imposter Dementia? Did he or she really mean that? After all l have been striving so very hard to do? Does that remark warrant a reprimand?
There are no blueprints to resolving any of these dilemmas and that remains a raw reality. Every single case is different. We as Carers are different, with our own history, our likes and dislikes, our reserves of energy, patience and domestic situation. Whilst there are drugs and tactics and regimes ( in Care Homes) to alleviate the varied presentations of dementia, the fact remains that dementia behaviour which poses huge challenges for we who willingly take the role of Carer, has to be seen as the " devil in the box" and approached as such, DEVOID of the one it inhabits. Difficult . But to nurture the one in your Care as a prisoner subject to all manner of reluctant behaviour instigated by the Dementia captor, is to recognise that the loved one is completely innocent - despite the tantrum, the screams of abuse, the apparent disregard for your unconditional Care. And when that fleeting moment comes, when the one you know and love so deeply and ' communication ' shines that heartfelt light upon you both in mutual wordless accord, you know that the imposter does not rule neither you nor the loved one, fundamentally because you perceive its presence and its expression and treat it accordingly. The one whom you love and Care for cannot perceive any of that and that is why, however extraordinarily difficult it might be, you learn to treat both imposter and the one it has claimed as its own, with abiding awareness. Then, one wishes wholeheartedly, that you know what to do or what to say or not say at a given moment. Therein lies profund introspection, which can only be a good thing and certainly a good thing for the one you Care for, because you have opened the pages of YOUR own book.
Thankyou Hazara8. I don't think I'll ever get used to it.
 

lushr

Registered User
Sep 25, 2020
16
it seems to me, as carers, we are all quite surprised to be where we are, the people we care for were incredibly self sufficient independent people in our lives. and now they are barely recognisable as that person... for many of us children, the roles have been switched.... we are now the parent.

my psychologist said to me that my mum will not understand needs outside her own, that’s a trait of the three year old child. i never had children!

as for depression and carer support yes, it’s huge, lots of support groups and i highly recommend a psychologist, to understand my own feelings, and what my mum is going through...
 
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Hazara8

Registered User
Apr 6, 2015
547
Thankyou Hazara8. I don't think I'll ever get used to it.
No, that is true in a very important sense. Because one is constantly challenged both inwardly and externally - the latter being the way in which we manage behaviours in a loved one so as to maintain their physical welfare. The inward, psychological management is profoundly greater a challenge and one can never get used to something so unpredictable and unfathomable as dementia in someone we know and yet seemingly do not know at all at given moments. Therefore it is an ongoing relationship which unlike "normal" relationships has no familiar pattern, no fixed regime, no security of ownership. This is why it truly helps to set aside moments of introspection. That does not imply getting used to it at all. But if one can clear the mind of expectation, or 'what has been' or ' what might be' and approach the actuality without that underlying urge to be elsewhere, then that at least dissipates the anxiety, the disappointment, the sense of inadequacy and all the rest of it.
In the early days of Care, the physical management, the unexpected tantrums, the reluctance to take medication, the inklings of paranoia, the night time events, the gradual progression of dementia so often subtle and seemingly wavering between mild and severe, the growing sense of being unable to sustain that Care into the despondent future - all of this presents as a " them and us" situation. You the Carer and the loved one being cared for. Then, one day the " them and us" becomes just " us" and things no longer seem so antagonistic or hopeless as before because there is a sharing of everything, apart from what inhabits the mind of the loved one. This is not some kind of panacea nor a means by which everything becomes suddenly ' normalised '. It is simply an observation which played out during my own dementia journey - which most certainly had its very dark moments of utter despair, but which by their very profound nature cast an enhancing light upon the actuality of those moments and gifted both clarity and reality as a given, enabling Care to continue without the angst which accompanied that daily Care before.
And which perhaps embedded in the subconscious the inevitable cessation of that Care come the day, when one was no longer able to do so, however willing, because the actuality very clearly told you so in no uncertain terms that you were inadequate, exhausted, potentially in need of Care yourself, by way of others taking on the mantle of Care which you had provided, perhaps for many years. Then, the " journey " becomes something else. Removed yet intensely meaningful. And no, you never get used to that either .
 

lushr

Registered User
Sep 25, 2020
16
No, that is true in a very important sense.

beatutifully said... all our journeys are so different, i work full time, i’m not a traditional carer yet most of my annual and sick leave is eaten up by my mother.

and underpinning all the new stuff is still the old stuff, no one gets along with their parents all the time! i can feel the worst aspect of her personality (depression, manipulation) lingering while her strength is sapped.

yet my strength is sapped too. i’m on three days unpaid annual leave to try to rest, get my house in order... catch up with life. i’ve just moved house as well as moving mum so my life is boxes and building ikea flat pack furniture and that job we all dread - emptying the family home... i have boxes here of things i think maybe i should just burn! but know i will regret next week....


lol.... they don’t write a manual for parenting, and they don’t write the manual for parenting your parents!
 

Herecomestrouble

Registered User
Dec 11, 2018
31
Am probably behind the game here, but having formerly responded with a degree of frustration when the wrong word comes out, I am trying hard to take a different tack - not least of all because I sometimes do the same myself - the word is just not there quickly enough and another takes its place - I know what I mean but a listener would struggle. So with my OH I am gradually getting into the habit of checking my automatic response to what he says and trying to work out what he means instead. it can feel a little like searching in the dark.
A friend's wife frequently asks to be taken home and asks him why he is there and where her husband is. I am sure that is familiar to some, but it is so hard and painful for him to adjust to her reality, which reinforces the loss that all carers in this situation are going through, slowly but surely. On a good day with almost a "professional" hat on, I am okay but on a bad day, it is just so sad and upsetting and difficult.
 

Herecomestrouble

Registered User
Dec 11, 2018
31
beatutifully said... all our journeys are so different, i work full time, i’m not a traditional carer yet most of my annual and sick leave is eaten up by my mother.

and underpinning all the new stuff is still the old stuff, no one gets along with their parents all the time! i can feel the worst aspect of her personality (depression, manipulation) lingering while her strength is sapped.

yet my strength is sapped too. i’m on three days unpaid annual leave to try to rest, get my house in order... catch up with life. i’ve just moved house as well as moving mum so my life is boxes and building ikea flat pack furniture and that job we all dread - emptying the family home... i have boxes here of things i think maybe i should just burn! but know i will regret next week....


lol.... they don’t write a manual for parenting, and they don’t write the manual for parenting your parents!
Don't burn! - Why not ask a friend to store some e stuff that you might think you should get rid of, for safe keeping for a month or so, and if you don't miss it, then get rid of it...but there is the danger of acting in haste, repenting at leisure and you have more than enough on your plate by the sounds of things to have to deal with those kind of feelings too.

and it is such a big issue for us all - this change of role - exacerbated by the fact that it was not what we expected - Even if had we been presented with the idea ("one day your mum or dad might need you to look after them", or promising "for better for worse, in sickness and in health") we would have consented to that intellectually without engaging with what it really meant. How could we do otherwise? Like giving birth I sometimes think....people say it is going to hurt like hell.......I was ready for that......ah.....no I wasn't!) . It can seem like a constant process of clumsy adjustment. Why do we set such impossibly high standards for ourselves ..My son is learning to free skate - he falls often. Isn't that how it goes when one learns something new?
 

Hazara8

Registered User
Apr 6, 2015
547
beatutifully said... all our journeys are so different, i work full time, i’m not a traditional carer yet most of my annual and sick leave is eaten up by my mother.

and underpinning all the new stuff is still the old stuff, no one gets along with their parents all the time! i can feel the worst aspect of her personality (depression, manipulation) lingering while her strength is sapped.

yet my strength is sapped too. i’m on three days unpaid annual leave to try to rest, get my house in order... catch up with life. i’ve just moved house as well as moving mum so my life is boxes and building ikea flat pack furniture and that job we all dread - emptying the family home... i have boxes here of things i think maybe i should just burn! but know i will regret next week....


lol.... they don’t write a manual for parenting, and they don’t write the manual for parenting your parents!
Alas, at the end of the day the only manual is oneself. Compassion provides clarity for the right action. But one has to take care also of oneself in order to fulfill the Caring role. And sometimes it is wise to acknowledge an instinctive action at the time, I.e. the clearing of " boxes " because unlike the here and now they gather the dust of time and inevitable decay.
 

lushr

Registered User
Sep 25, 2020
16
@Herecomestrouble thanks, i have hired storage for 12 months so i don’t have to deal with it all now. i can move my own stuff and access my washing machine - that’s the plan... i will be moving a few extra bides out of my life and into next year to deal with... giving me time to sort my own dishes and books and cds, before worrying about hers.

i only kept things of value, things that mean something. but it is a huge task to sort through decades of photos (a century of them actuLly...

@Hazara8 “compassion provides clarity” wise words my problem is that compassion for myself conflicts with compassion for mum. i think calling her each day and visiting each week is destroying me.
 

Hazara8

Registered User
Apr 6, 2015
547
@Herecomestrouble thanks, i have hired storage for 12 months so i don’t have to deal with it all now. i can move my own stuff and access my washing machine - that’s the plan... i will be moving a few extra bides out of my life and into next year to deal with... giving me time to sort my own dishes and books and cds, before worrying about hers.

i only kept things of value, things that mean something. but it is a huge task to sort through decades of photos (a century of them actuLly...

@Hazara8 “compassion provides clarity” wise words my problem is that compassion for myself conflicts with compassion for mum. i think calling her each day and visiting each week is destroying me.
Yes, and compassion embraces all things, your well being included, else you become redundant. The nurse who tends the sickly patient must also sleep and eat. Compassion is in essence the heartfelt awareness of humanity of which each one of us are a part. Thus you in turn must be included in that. There should be no sense of failing whatsoever. You cannot be held responsible for dementia in another. You matter equally as a human being and self awareness in all of this provides clarity.
 

lushr

Registered User
Sep 25, 2020
16
i went back to find @Whisperer post, beautiful! i wish we could leave hearts next to valuable posts wer relate to or appreciate.
 

Whisperer

Registered User
Mar 27, 2017
231
Dear @DreamsAreReal and @lushr

Thank you for your kind comments. We have all met Dementia now in our lives, the party guest from hell. We know the heart break, the emotional hits the, physical demands, the certainty they will slowly grow. I had a dark patch about 18 months ago, found myself unable to sleep one night, the whole situation had just got to much. In that moment I realised that yes Dementia is a dark shadow on the lives of many, more individually I was going to lose mum and not in a nice way. To help mum I had to get myself in a better place. Many of the decisions my earlier post mentioned stopped being vague thoughts and solidified in my mind that night. Crucially I agreed with myself that humour was a valid tool, would help me in the future.

I post sensitively on this forum as others arrive at different conclusions or are at different points on the caring road. Glad my comments could be of help and raise a smile. I close wishing you both well in the future.