• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

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How do you stop putting your life on hold?

Lavender45

Registered User
Jun 7, 2015
1,598
Liverpool
Maybe that's a daft question, maybe its just me.

Mum is in an EMI Nursing Home. I should be picking up the threads of my life job hunting and slotting back into a more normal existence, but I'm not. I don't feel ready to be the normal person. I feel like I flicked a switch and paused life when I gave up work to care for mum and now I'm blessed if I can motivate myself to flick that switch back. I suspect that makes me bone idle, a thought I'm not comfortable with, but how do I shake the lethargy?
 

DeMartin

Registered User
Jul 4, 2017
711
Kent
Start small, volunteering a few hours a week in a charity shop, makes you get up, clean up and you get to meet a variety of people, both fellow volunteers and the general public. A lot of libraries need volunteers especially if you have computer skills.
It’s the getting out and beginning a “normal” life.
Small Steps.
 

Linbrusco

Registered User
Mar 4, 2013
1,603
Auckland...... New Zealand
Its taken me 18mnths since Mum went into her care home for me to feel ready to start planning & doing things for myself and my family.
Now working an extra day at work, paying off some debts, a big tidy up at home ( home & garden maintenance neglected) joined a gym :) and although we had a scare a few weeks back with Mum in hospital, tomorrow my husband and I are flying to Australia for a week ( im in New Zealand) for his sisters 60th.
My sister & brother are keeping an eye on my Dad, and my 21yo son is looking after my 16yo daughter.

Its been a series of small things which I made a list of, ticking them off one by one.
I think a sense of satisfaction and accomplishment are feelings much overdue for me :)

My Dad is waiting on a Memory Team assesment again so im taking the chance while I can to do things
 

Norfolk Cherry

Registered User
Feb 17, 2018
287
Thats a very good point maybe the big leap back into full time employment is just a bit too daunting. Thank you. X
The full on caring role is inevitably going to take a huge hit to anyone's confidence in the work place. We have had to fundamentally change our identities after a long period of being a carer. I agree about the small steps approach. You are absolutely not "bone idle"! I'm part time, about to give up work and looking after my mum who lives in her own home close by, with carers 3 times a day. What I notice is how much it has affected my conversation with people. It's a struggle to talk about something other than "my mum" Who wants to talk about that!! I'm losing interest in the world, I used to be much more engaged with politics and culture, and I need to work at bringing that back. Take it slowly and enjoy your re-entry into the world outside of caring! I guess we will all come out the other end, changed but in a positive way.
 

smartieplum

Registered User
Jul 29, 2014
259
Maybe that's a daft question, maybe its just me.

Mum is in an EMI Nursing Home. I should be picking up the threads of my life job hunting and slotting back into a more normal existence, but I'm not. I don't feel ready to be the normal person. I feel like I flicked a switch and paused life when I gave up work to care for mum and now I'm blessed if I can motivate myself to flick that switch back. I suspect that makes me bone idle, a thought I'm not comfortable with, but how do I shake the lethargy?
I suppose it's a new normal. My mum recently went to a NH and instead of her being with me, I I look on it as visiting her in her new pad. I miss her more than I can say but I HAVE to go on.
 

arielsmelody

Registered User
Jul 16, 2015
516
It sounds to me as if you are maybe suffering from depression - not full on major depression, but you have been and are going through a lot, which has left you low at the moment. Don't be too hard on yourself - have some rest, get outside in the fresh air, give yourself a bit of space to recover and start to feel more like yourself. Maybe if it drags on, it might help to go to your gp.
 

acorns

Registered User
Jan 25, 2018
103
I agree - I've gone from being a complete workaholic to not missing work at all or even wanting to go back to that stressful working life. I suppose we've taken a different path now so we have to expect change. Let's look on the bright side - we are going to land on our feet after all this because if we can get through this we can cope with most other things!
 

kindred

Registered User
Apr 8, 2018
2,343
Maybe that's a daft question, maybe its just me.

Mum is in an EMI Nursing Home. I should be picking up the threads of my life job hunting and slotting back into a more normal existence, but I'm not. I don't feel ready to be the normal person. I feel like I flicked a switch and paused life when I gave up work to care for mum and now I'm blessed if I can motivate myself to flick that switch back. I suspect that makes me bone idle, a thought I'm not comfortable with, but how do I shake the lethargy?

Thank you and I so understand. So well done on caring for your mum as you did. I am just emerging from four years being sole carer for my profoundly demented husband. At one stage I wondered if I would ever be a human being again. I'm a mental health professional and understand what was happening to my mind, and please, you are not idle. You have been through a prolonged trauma and it will take time to feel normal and part of life again. I have been a psychotherapist for so many years and one thing I have learned that may be relevant is that life is a struggle to find somewhere rewarding to put the mind. Dementia is engulfing and threatens this, it fills the mind and makes us uneasy when it doesn't. My experience is that slowly building up putting the mind somewhere interesting, gardening, reading, simple things and practising keeping the mind there, not wandering into dementia or how mum is, eventually seems to reboot energy and motivation. But we need to really keep on to establish that habit.
Regarding our lives as a whole narrative is helpful. And again, the sheer engulfing nature of dementia threatens this. But it is only part of our lives, and a smaller part of our lives now that our loved ones are cared for. We have to work hard on ourselves to make sure dementia is not the only story we have to tell.

Please eat well and look after your health. I found myself choosing really cheap food as we are self-funding and I became afraid to spend anything. But this really won't do will it. Is your health good?
Thank you for posting. This forum is wonderful. All good wishes.
 

elvismad

Registered User
Jan 8, 2012
289
Maybe that's a daft question, maybe its just me.

Mum is in an EMI Nursing Home. I should be picking up the threads of my life job hunting and slotting back into a more normal existence, but I'm not. I don't feel ready to be the normal person. I feel like I flicked a switch and paused life when I gave up work to care for mum and now I'm blessed if I can motivate myself to flick that switch back. I suspect that makes me bone idle, a thought I'm not comfortable with, but how do I shake the lethargy?
HI Lavender, I understand how you feel. Since mums move into Assisted Living I have more time but I worry constantly. I did not give up work and actually feel quite normal when there. Its the evenings and weekends I struggle with. I find no energy to do the mundane housework etc. and can't seem to motivate myself. I feel I need to be with mum but am trying to give myself 2 nights of not visiting a week. I don't feel like going out and seem to have lost all interest in things I once enjoyed. I actually told my husband the other night that there is simply 'no joy'. I had started to drink more than was good for me and have decided (this is the first week) to abstain from now on. I am going to try taking small steps. I packed my swimming gear this morning and have decided to go on my way home from work. I had entered the Swimathon with a friend and I don't want to let her down. Maybe that's the way - plan stuff with someone else. Its harder to back out if you feel you will let someone don.
 

Hazara8

Registered User
Apr 6, 2015
408
Maybe that's a daft question, maybe its just me.

Mum is in an EMI Nursing Home. I should be picking up the threads of my life job hunting and slotting back into a more normal existence, but I'm not. I don't feel ready to be the normal person. I feel like I flicked a switch and paused life when I gave up work to care for mum and now I'm blessed if I can motivate myself to flick that switch back. I suspect that makes me bone idle, a thought I'm not comfortable with, but how do I shake the lethargy?
That 'normal existence' one speaks of, is challenged quite significantly when you enter that quite extraordinary world of 'dementia'. In a way, it brings to mind the time that I lost my father, rather unexpectedly and whilst walking through town, seemed hypersensitive to everything going on around me. What was once 'normal' - people chatting, shopping, smiling, going about their business - was no longer so. "Why are these people acting as if nothing has happened?" "Why does that blue sky filled with pristine white clouds, no longer look the same?". It seemed to me, then as a now, that once you are faced with that 'reality', the undeniable, unavoidable, factual and truthful 'reality' which is set before you when you are caring for a loved one with dementia,then the everyday matters, those things which appear to be so important 'normally', change and quite simply become almost irrelevant. I actually gave up work and in so doing, soon became oblivious to any ambition whatsoever - my focus, my utter preoccupation was with my mother - not simply because it was mother and she required care, but it was mother in the merciless possession of dementia and that very fundamental reality, which this disease opens up, also brings about what is quite simply a living relationship with undeniable TRUTH. As with the bereavement cited earlier, there is no escape from this and it colours everything by the sheer nature of its being. Melodramatic? Perhaps, when you have not been down that path, like so many things in life. It should be no surprise to feel the way you do. Caring for someone with dementia, especially when the relationship is so close, opens up feelings and an awareness often not touched upon in 'normal' life. That whole spectrum of emotions that we humans are prone to - hope, anxiety, fear, frustration, confusion, pain, despair, anger, guilt, exhaustion, depression, expectation, and so on and so forth - become a kind of 'norm'. Is it any wonder that the prospect of job-seeking, earning a crust, all the daily practicable matters which enable us to function in the world and yes, even preparing a meal, seem, at times utterly trite as if to impinge on what really matters. That "here and now" truth, which registers so starkly on the face of your loved one, in those moments of real need, is what is meant, I suggest, by 'humanity' in essence and these other matters - important as they clearly are - can never address that truth, albeit that they are termed 'normal existence'. You touch something far deeper in dementia world and that, perhaps, never really leaves you and your perspective on 'life' changes, maybe for ever.
 

Duggies-girl

Registered User
Sep 6, 2017
1,787
That 'normal existence' one speaks of, is challenged quite significantly when you enter that quite extraordinary world of 'dementia'. In a way, it brings to mind the time that I lost my father, rather unexpectedly and whilst walking through town, seemed hypersensitive to everything going on around me. What was once 'normal' - people chatting, shopping, smiling, going about their business - was no longer so. "Why are these people acting as if nothing has happened?" "Why does that blue sky filled with pristine white clouds, no longer look the same?". It seemed to me, then as a now, that once you are faced with that 'reality', the undeniable, unavoidable, factual and truthful 'reality' which is set before you when you are caring for a loved one with dementia,then the everyday matters, those things which appear to be so important 'normally', change and quite simply become almost irrelevant. I actually gave up work and in so doing, soon became oblivious to any ambition whatsoever - my focus, my utter preoccupation was with my mother - not simply because it was mother and she required care, but it was mother in the merciless possession of dementia and that very fundamental reality, which this disease opens up, also brings about what is quite simply a living relationship with undeniable TRUTH. As with the bereavement cited earlier, there is no escape from this and it colours everything by the sheer nature of its being. Melodramatic? Perhaps, when you have not been down that path, like so many things in life. It should be no surprise to feel the way you do. Caring for someone with dementia, especially when the relationship is so close, opens up feelings and an awareness often not touched upon in 'normal' life. That whole spectrum of emotions that we humans are prone to - hope, anxiety, fear, frustration, confusion, pain, despair, anger, guilt, exhaustion, depression, expectation, and so on and so forth - become a kind of 'norm'. Is it any wonder that the prospect of job-seeking, earning a crust, all the daily practicable matters which enable us to function in the world and yes, even preparing a meal, seem, at times utterly trite as if to impinge on what really matters. That "here and now" truth, which registers so starkly on the face of your loved one, in those moments of real need, is what is meant, I suggest, by 'humanity' in essence and these other matters - important as they clearly are - can never address that truth, albeit that they are termed 'normal existence'. You touch something far deeper in dementia world and that, perhaps, never really leaves you and your perspective on 'life' changes, maybe for ever.
Wow @Hazara8 I wish I could have written that. Yes I have given up work to look after my dad and normal existence has gone. Everything is dad and everything else seems trivial now. It's like I have become enclosed in my own bubble away from the normal world and the normal world does not look the same anymore. It looks mundane and irrelevant.

My perspective on life has changed. Possessions mean nothing unless they have a purpose. I no longer want anything other than to one day do some travelling, preferably on my own. I just want a direction to go I suppose without responsibilities.
 

kindred

Registered User
Apr 8, 2018
2,343
Wow @Hazara8 I wish I could have written that. Yes I have given up work to look after my dad and normal existence has gone. Everything is dad and everything else seems trivial now. It's like I have become enclosed in my own bubble away from the normal world and the normal world does not look the same anymore. It looks mundane and irrelevant.

My perspective on life has changed. Possessions mean nothing unless they have a purpose. I no longer want anything other than to one day do some travelling, preferably on my own. I just want a direction to go I suppose without responsibilities.
 

kindred

Registered User
Apr 8, 2018
2,343
Oh my goodness, there are some beautiful and profound posts here, so much that I identify with. As I was the invisible carer to the support services, I started to feel I had no value and that everything I did was wrong. Even though I understood the dynamics, it didn't make any difference, and I too was a 24/7 sole carer, a kind of slave to dementia. As for possessions not having a meaning, I remember that on the day my OH was diagnosed, I actually ceased to want anything and couldn't imagine how anyone could want things ... I so agree that the normal world looks mundane and irrelevant. As though I had gone through the door into a parallel Universe. Thank you so so much for your posts, thank you.
 

hilaryd

Registered User
May 28, 2017
84
Huge thanks from me too. My mum died in January after a fairly short but very rapid and intense dementia decline, and the feelings others have described above are exactly what I've been experiencing - such a relief to know it's not just me! The world is changed, together with my place in it, and I'm finding it very hard to readjust. However, there have been positive changes too - for example, a closer relationship with my co-carer sister, a different perspective on what is and isn't important, and greater empathy with others in a similar position and with other PWDs. Yet again, hurrah for this wonderful forum, and best wishes to all.
 

DollyBird16

Registered User
Sep 5, 2017
1,186
Greater London
Hi @Lavender45,
What you are experiencing would seem to be perfectly normal to me. My Mum has been in care (after me caring for her 24/7) for 6 weeks now and I went for my first job interview for full-time work yesterday. I have to do this because I can not survive financially without a job, even for a few more weeks, but in reality part of me feels just as you have described. The trauma of the last few years has been so extreme and so much has been given physically, mentally and emotionally that I felt I was no longer the same person that I had been when I gave up work 3 years prior. The exhaustion has been overwhelming to recover from. I can focus for some considerable time on certain types of work (like the 5 hour on-line application for the job I was applying for!), but felt completely peculiar at the interview. Even putting make-up on for the first time in 3 years and wearing smart clothes was weird and seemed completely unnecessary, after being housebound with Mum for the last year and a half. After dealing with life and death incidents on a regular basis, whether I put one or two coats of mascara on has become irrelevant. Of course it is necessary out there where dementia hasn't touched other people and in the workplace, in the so called 'real' world, we have to play by the rules. However, inside me, my world and the rules have changed and I don't think there is any going back completely to how I was 'before'. It's a case of finding the best way to live in the new and changed reality, I feel. If you are able without financial constraints to take time to find the best way to move forward in your reality, then take it. If I had an option, I would take a good 6 months and give myself the time my mind and body needs to heal. Unfortunately I can not do that and must move on to survive. The emotions are all still there, because as we all know, our loved one being in a home does not take away any of what we are dealing with emotionally and there are still the visits and the other care we have to accomplish for them to stay there. I must add that I failed 50% of the practical test I had to take at my interview! I just could not get my head together. Then, when it was all over and I had got home, I retired to lie on my bed for the rest of the afternoon, totally shattered. I know I am not bone idle. I am certain you are not. It is a recovery period and to my mind, perfectly natural after what we have been through as carers. Please be kind to yourself now. You are allowed.
Oh so true, who cares about how much mascara and posh clothes, I’ve never subscribed to that.
I wanted to message to say well done, getting an interview is a huge accomplishment in itself, you done good, hats off to you. X