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

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

How many of us manage to keep a job going?

AliceA

Registered User
May 27, 2016
2,645
As the philosophy says - we only ever have control over our own thoughts and our own actions. The rest is not ours to control(as much as we would like to). So it has to be about ourselves in the first instance, as wrong or selfish as that can feel sometimes, or else we can't be there for others. That's not to say its in any way easy or as simple as it sounds. As I mentioned before, "put on your own oxygen mask first before trying to help others" is counterintuitive but logically the best way to ensure a positive outcome for all.
xxx
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Have been away from the forum for a while but saw this strand thought I would post. If only because it has been 'one of those days'. I have been struggling to manage my full time job with my caring role for Mum, as I live with her full time and until now she has not accepted any other care in to 'her' house. We have 'managed' in our own way, and only recently she has accepted help in for a couple of hours a week (my escape time) and work have been very supportive, giving me the technogy to work from home, or try to, as I find I can only really manage the equivalent of 3 days in the hours I can grab to actually work. I know I have to keep working to ensure I have a future financially. The house will end up sold to pay for the future care home bills and my life will change once again. I am OK with that, change happens, and Is inevitable, the trouble is trying to cope with the now and the emotional roller-coaster of caring for PWD and caring for my own needs. Plus also having enough to give to work and a job I love but now I have to admit I can't really fulfill from a distance, as much as we are all trying to make it work. I am so very grateful that they are willing to do so and have supported me. So many employers don't or won't. Also really miss the real - time social interaction and the feeling of being the old me, a person not caught up in dementia and caring; needing to always explain why I am behind in things and not available for meetings. It feels like there is always another person with me now, even if they are not really there, it's never just me - if that makes sense? I am starting to loose myself to this now, it feels, and I want to try to find a way to maintain a 'lifeline' to the future and my job seems to be it, if I can just hold on. But it is a struggle. Today is my 49th birthday and work colleagues when I managed to call in there briefly this afternoon(in my hour escape time) were joking about the next year's big one and planning the party now. A major project I was working on has its opening event tomorrow and I can't be there. A bit of a birthday wobble and emotional vent here, but the trouble is we most times 'apply' for a job, none of us applied for the role of carer did we?
No need to be sorry, I can fully understand and recognise your thoughts. You don't need to justify anything. Instead you are admired for your love and devotion to those you care for.
Thank you - I’m very emotional after visiting Dad today - I appreciated your post
(((((((Hugs))))))
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
It seems like you were really given a rough deal in life - to have both parents with Dementia must be unbelievably heartbreaking. I feel like my situation is not really so bad in that I can provide care for my partner while still working part time (I have to work to keep some part of myself and normality - I have 10 years before retirement, my partner is a lot older than me). What people who haven't experienced dementia don't realise is how desperate the situation of caring and juggling can be and why it's so vital to find a cure for this horrendous disease.
actually I’m in awe of those including yourself who care for their PWD at home. That’s the toughest thing to deal with. When I used to have Dad here for respite care I was alert 24/7 &found him wandering around at all times of the day & night- having to hide the house keys incase he got out. So I’m in full admiration of those whose PWD is at home being cared for. As for me I just bumble through life lurching from one drama to another it seems.
This Christmas I’m going to ask Santa for a dose of boring normality! Fingers crossedxx
 

Crafts101

Registered User
Aug 22, 2019
40
Perhaps we should make that a bulk order for us all, and get the request to Santa in early ;)
Normality....... Never boring; often longed for; very rarely seen.
Xxx
 

White Rose

Registered User
Nov 4, 2018
357
Perhaps we should make that a bulk order for us all, and get the request to Santa in early ;)
Normality....... Never boring; often longed for; very rarely seen.
Xxx
actually I’m in awe of those including yourself who care for their PWD at home. That’s the toughest thing to deal with. When I used to have Dad here for respite care I was alert 24/7 &found him wandering around at all times of the day & night- having to hide the house keys incase he got out. So I’m in full admiration of those whose PWD is at home being cared for. As for me I just bumble through life lurching from one drama to another it seems.
This Christmas I’m going to ask Santa for a dose of boring normality! Fingers crossedxx
That wandering thing must be awful - I don't have that (yet!), he sticks to me like glue, won't go to bed unless I do and would get up at the same time unless I can persuade him to 'have a lie in'.
 

Emac

Registered User
Mar 2, 2013
181
I have just caught up on this thread, wow ; thank you ! Brilliantly expressed!
Even being self employed - artist & having a support worker ( I’m registered disabled) to help with my prep work a few hours a week through access to work ..... I still find myself daily struggling to get time to do my work. It’s hard enough just to keep up with the paper work etc. My Mum & Dad don’t live with me, Dads in a care home, Mum has carers in 4 times a day. Yet I struggle to balance life. So how full time carers manage I have no idea.

visiting the parents -
- one day a week I drive a 5- 6 hour round trip to see Mum
That’s almost a days work in travelling! Then spending time with Mum doing her shopping & making sure any letters still sent to mum are dealt with despite years of LPA we still have to sort some mail out!
Sorting out any issues on home maintenance etc. Meeting health teams etc; all this is done in one day a week ! it’s a good 16-17 hour day. The exhaustion I have the next few days leaves me bed bound & in extra pain - I have acute ME after having TIA’s over 20 years ago. Id like to point out I’m on the higher rate of PIP care but had my higher rate of mobility taken away( yes I contested it all the way but the fact that I drove such long distances went against me along with the fact that I don’t use a stick - I kept tripping over it !)
-Dads in a care home that is not meeting his care needs ( don’t worry folks it’s another thing that’s now in hand !) That has brought extra problems & again it’s down to me to sort it out.

- so my time isn’t my own
- I have a duty of care as LPA to ensure best interests of my PWD are in place
- my life if dominated by sorting out two PWD welfare. Both have different needs & are at different stages.
- my life revolves around ensuring that those daily needs of each parent are met!

no one else will do that

- both parents due to my continuing diligence & care have had the failings of the system highlighted & safeguarding issues raised. These are ongoing for Dad, meanwhile Mum now has the care package in place she needs - but I still have to be the liaison point as her GP failed Mum with dramatic consequences!

- if I didn’t sacrifice my time & quality of life what would have happened to my Mum & Dad?

- Mum wouldn’t have had the diagnosis she so desperately needed & the medication & help.

- Dad would not have had social services investigate his home for failing to meet his needs.

- my Mum who was unbeknown to me in had dementia was caring for my Dad who was diagnosed with dementia......

So to anyone who says well your parents wouldn’t want you not to have a life of your own , I totally agree my parents before dementia would have said that. But this is now my parents with dementia & the normal rules of life just don’t apply with dementia.

it’s a terminal diagnosis which isn’t treated as a terminal disease! The PWD is robbed of the ability often to express pain & discomfort, who else but a loved one can know the little signs that indicate distress.

in all honesty my parents have regressed, my mum to a toddler & my Dad to a baby. That is the stage of their care needs - I didn’t have a life when caring for my own young children & I don’t have one now. There isn’t a difference between the two experiences except funding & my ability to care for the PWD - otherwise the similarities are frighteningly similar.

Yes it’s not fair
Yes it means I have given up so much - work opportunities, social life etc but for Me I know that I have done everything I could have possibly done to ensure that they had the best care in place possible; & when the system failed them I was there to make sure that those failures were rectified.
Yes my own health & happiness has suffered but my parents are at end stage dementia- dignity & being pain free seems to be more important in my mind; maybe I’ve got it all wrong but I need to know that I did everything I could do

sorry folks if I’ve upset anyone but I’ve given u so much because of my parents dementia- perhaps I’m trying to justify it
You have been given an very tough load having two parents with dementia and I totally agree with your comment that it’s like having a toddler or a baby only in an adults body...and their needs are very similar. However even within your current circumstances I think you do need to consider your own wellbeing in the mix..difficult though that is. That could be in little things such as taking an hour or two to yourself rather than dealing with your Mums bills or correspondence right away or larger ones such as considering whether your life might be made easier and the load more manageable if your Mum was also in a care home. Managing a care package from a distance must be incredibly stressful. Managing the care home is of course also necessary but perhaps better than worrying about your Mum being at home alone?

However you sound like a very strong competent woman and you don’t have to justify anything. Perhaps you have already considered other options and have good reasons not to look at residential care for Mum right now. We all have to do what we think is right and you are doing an exceptional job!

I just know that it’s easy to feel that there are no other options and to think your own needs don’t matter and only the PWD’S needs count. I like to challenge that wherever I see it. I have watched my sister make herself physically ill through doing too much for our Mum and Dad and came close to a major bout of depression myself so I worry when I read about carers giving up more and more of themselves...without questioning it or considering alternatives that take their own needs into consideration which is something we all need to do if we are to sustain caring in the long term.

There’s something about feeling as though you have made a choice to do something though that makes a difference and it sounds like you have done that and are comfortable with the choices you have made so don’t allow anything I or anyone else posts to make you doubt that! My intention was to help not to hinder.

Wishing you the strength to always do what you think is right.

Emac
 

Bikerbeth

Registered User
Feb 11, 2019
755
Bedford
I had a bright idea to take early retirement and give up my ‘proper’ full time stressful job and decided to do temp/contract work through the winters and then travel from May to Sept. 18 months later Mum got her diagnosis. Temp work and Mum’s multiple phone calls to me through the day did not go together very well. Other various appointments along with 2 cataract operations And associated care made it impossible to continue. I have felt I have tried my best to look after Mum during this year but currently await a place for Mum in a Care Home. I really would like to follow at least some of my plans before it is too late. I have had 2 partners who have died unexpectedly before reaching 50 so know in a totally different way how cruel life can be. So selfishly once Mum is settled nearer to me I hold hope that she is safe and well cared for and I can do some travelling although the world tour may have to wait
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
You have been given an very tough load having two parents with dementia and I totally agree with your comment that it’s like having a toddler or a baby only in an adults body...and their needs are very similar. However even within your current circumstances I think you do need to consider your own wellbeing in the mix..difficult though that is. That could be in little things such as taking an hour or two to yourself rather than dealing with your Mums bills or correspondence right away or larger ones such as considering whether your life might be made easier and the load more manageable if your Mum was also in a care home. Managing a care package from a distance must be incredibly stressful. Managing the care home is of course also necessary but perhaps better than worrying about your Mum being at home alone?

However you sound like a very strong competent woman and you don’t have to justify anything. Perhaps you have already considered other options and have good reasons not to look at residential care for Mum right now. We all have to do what we think is right and you are doing an exceptional job!

I just know that it’s easy to feel that there are no other options and to think your own needs don’t matter and only the PWD’S needs count. I like to challenge that wherever I see it. I have watched my sister make herself physically ill through doing too much for our Mum and Dad and came close to a major bout of depression myself so I worry when I read about carers giving up more and more of themselves...without questioning it or considering alternatives that take their own needs into consideration which is something we all need to do if we are to sustain caring in the long term.

There’s something about feeling as though you have made a choice to do something though that makes a difference and it sounds like you have done that and are comfortable with the choices you have made so don’t allow anything I or anyone else posts to make you doubt that! My intention was to help not to hinder.

Wishing you the strength to always do what you think is right.

Emac
oh bless you, I’m a total mess at the moment - other life issues have popped up & I’d normally cope but as the saying goes it’s a bit like the straw that broke the camels back!!

a good night sleep- only woke at 2 am !

Totally agree with you that a Care home at some point might be the only option for
Mum. She recently went into a respite care situation Mum wanted to visit Dad & I couldn’t manage her needs in our house - stairs etc. Mums type of dementia means she can come across as high functioning, but is a high falls risk, gets exhausted by the simplest of daily life- ie getting out of bed & becomes extremely confused with exhaustion. So a Care home meant she was well looked after but above the other residents intellectually. Now she’s on memantine her behaviour issues have been resolved to a certain degree that’s now manageable. Mum has carers in 4 times a day & I actually no longer have the worries I had about all aspects of her care. The GP is going to be a pain, but I can get another GP out if required - the reception staff are excellent & aware of the issues. It does help growing up & knowing a lot of them!

As Dads at the end of his life now all I can do is be around for him & provide the comfort of being held. How long it takes the body in this final stage is totally unknown - how long is a piece of string. Dad becomes easily dehydrated & his lower lip swells regularly. The care home are giving him protein drinks, bit like shutting the stable door after the horse has bolted as Dad has lost 6 kg in a month.

So Dads lovely new GP has put him on stronger morphine patches & the liquid oromorph to back it up.

Getting the home to admit what the medical professionals have stated is no longer my concern - an Enquiry by safeguarding is underway. The lovely SW doing this has found Dad as we describe, so I’m no longer fighting the system alone I’m actually standing with others with Dads best interests at heart.

It’s always good to have a balanced view & I appreciate those that give that; it’s not an easy position or popular at times & certainly brings out the defensive in those the advice is meant to help. ( Hands up - that’s me!!) But I totally appreciate your input- you say the same as my own husband & children, & others. This is a no win situation though & I have to be able to live with myself afterwards ... I’m adopted you see & 18 months ago my biological mum passed away. We had known each other for over 20 years but her own family were not as welcoming shall we say - in particular her husband was off at times. So I found myself cut from that family support & grieving on my own. I don’t want to have the regrets I had with my beloved biological Mum so I guess I’m overcompensating!

I’m going to go on a bike ride with my husband today ! Actually it’s going to be a lot shorter than he expects - I haven’t ridden a bike since I backpacked our hefty fell terrier after she decided that she’d had enough ! That’s over 10 years ago!!

so thank you for playing devils advocate - it’s a necessary role but not always a popular one
(((((Hugs)))))))
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
That wandering thing must be awful - I don't have that (yet!), he sticks to me like glue, won't go to bed unless I do and would get up at the same time unless I can persuade him to 'have a lie in'.
Sadly I’d now be happy if he was able to wander & be mobile- hindsight means that those precious walks we went on with the dogs are history never to be repeated.

Dementias a cruel disease & I hope my experiences can bring light to another’s journey
 

Bunpoots

Volunteer Host
Apr 1, 2016
3,820
Nottinghamshire
Enjoy your bike ride @DesperateofDevon. I started riding again last year after a break of about 10years. It helped my mood a lot. The hills nearly killed me then (actually I pushed the bike up the steepest of them)...they seem flatter this year!

I hope your dad is comfortable at last.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Enjoy your bike ride @DesperateofDevon. I started riding again last year after a break of about 10years. It helped my mood a lot. The hills nearly killed me then (actually I pushed the bike up the steepest of them)...they seem flatter this year!

I hope your dad is comfortable at last.
Hills..... oh no nothing but flat cycle path for me ! I might even get OH to drive me down to the cycle path in the van!! Baby steps you know ! I wonder if trainer wheels might be appropriate- or maybe a tricycle???
 

Bunpoots

Volunteer Host
Apr 1, 2016
3,820
Nottinghamshire
Hills..... oh no nothing but flat cycle path for me ! I might even get OH to drive me down to the cycle path in the van!! Baby steps you know ! I wonder if trainer wheels might be appropriate- or maybe a tricycle???
:D I fell off my bike a few weeks ago so my daughter told me I needed trainer wheels :rolleyes:...

I’m going for a ride this morning - 2 big hills and a nice flat bit in the middle
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
:D I fell off my bike a few weeks ago so my daughter told me I needed trainer wheels :rolleyes:...

I’m going for a ride this morning - 2 big hills and a nice flat bit in the middle
my FIL has a recumbent bike , while an acquaintance just bought an electric bike - he’s a keen cyclist & super fit! An electric recumbent bike appeals with a nice comfy padded seat- or is that just a sofa on wheels with a motor attached? Umm ...
 

Brian_P6

Registered User
Dec 1, 2015
5
Hi maryjoan,

I work from home too and I think that is the key - find something that you can do working from home. The motivation is the difficult part, I thought it was because I was "gender challenged" that meant I couldn't multi-task ;-) but maybe you're right, the constant being called away for this, that and the other does distract and make motivation hard. It is worth doing though because it means that you can interact with others and have sane conversations even if it is by telephone, and for that brief moment, you're not a prisoner.

As a younger person (I'm 52, my wife with Alz is 66), I also find that the whole 'state help' is geared towards the expectation that everyone with dementia is retired and on a pension - well that's what it felt like. After I gave up work 4 years ago, there was no way with the CA, PIP etc that I could pay the bills so I set up my own little company. I do websites and membership systems for enthusiasts clubs. I can easily work 40 hours a week at this. Productivity is low (so is the pay, but that's not the point, do it for sanity) because of the call aways and motivational issues, but a few hours here and there, plus she goes to bed early then I get the evening too and it soon mounts up over 7 days. Once you do that ...... you get Working Tax Credit !! Yay - then I could pay the bills!
 

SoAlone

Registered User
May 19, 2016
142
Devon
I worked for about 3 years, whilst still caring for OH at home, with no support from Social Services or GPs. My employers were superb, taking no account of the frequent times being called home or not getting in for 2 hours or so.Whole story is too long to details but, in the end the lack of support from these two sources led to OH being sectioned (he wouldn't eat or drink despite my best efforts) and to me suffering what is known at Carer Breakdown, by the powers that be. Because I didn't have POA for health and welfare, Best Interest Team decision was he needed full time Nursing Care and after a slight hiccup we found a wonderful home where they care for him so well. I am now his wife again, who he is pleased to see and not the nag bag of a useless nurse he used to think I was. Being much younger than OH and still having sizeable mortgage, giving up work and staying in our home weren't something I could achieve. When things turned out as they did I was glad of the job to absorb me for a while each day. However, don't think I don't feel guilt every day, and still daydream of looking after my gorgeous OH full time. I can't advise, but that is my story. Take from it anything that helps
 

theartmonster

New member
Jun 10, 2019
5
I’m 29 and live with my Nan and Grandad, and am my Nan’s carer, shes been diagnosed with Alzheimer’s for about 6 years and within the last year my Grandads become unable to cope and change his behaviours/routines to do what’s best for Nan and her routine. She can’t be left on her own anymore and it’s very much like being her parent.
Most of the care is by me, but I can’t afford not to work, so my Grandad looks after her on the days I work. It’s so tiring as I’m getting up in the early hours every morning to help Nan get to the bathroom.
Although it’s not restful, going to work does give me respite. However I’m still having to deal with calls to doctors, social services and the care companies so I’m never truly switched off.
 

kindred

Registered User
Apr 8, 2018
2,341
I’m 29 and live with my Nan and Grandad, and am my Nan’s carer, shes been diagnosed with Alzheimer’s for about 6 years and within the last year my Grandads become unable to cope and change his behaviours/routines to do what’s best for Nan and her routine. She can’t be left on her own anymore and it’s very much like being her parent.
Most of the care is by me, but I can’t afford not to work, so my Grandad looks after her on the days I work. It’s so tiring as I’m getting up in the early hours every morning to help Nan get to the bathroom.
Although it’s not restful, going to work does give me respite. However I’m still having to deal with calls to doctors, social services and the care companies so I’m never truly switched off.
Welcome and you are going to be a great asset to our forum!! I've just read your very helpful post on gagging and choking too. Thank you!
warmest, Kindred.
 

White Rose

Registered User
Nov 4, 2018
357
I’m 29 and live with my Nan and Grandad, and am my Nan’s carer, shes been diagnosed with Alzheimer’s for about 6 years and within the last year my Grandads become unable to cope and change his behaviours/routines to do what’s best for Nan and her routine. She can’t be left on her own anymore and it’s very much like being her parent.
Most of the care is by me, but I can’t afford not to work, so my Grandad looks after her on the days I work. It’s so tiring as I’m getting up in the early hours every morning to help Nan get to the bathroom.
Although it’s not restful, going to work does give me respite. However I’m still having to deal with calls to doctors, social services and the care companies so I’m never truly switched off.
What a wonderful grand daughter to do that for your grandparents - I don't think I could have done it when I was your age. Hope you manage to fit in a bit of fun with people your own age sometimes though, caring for a person with Alzheimer's is relentless.
 

Olliebeak

Registered User
Sep 13, 2014
116
Buckinghamshire
My situation is a bit similar. My husband 17 years older, he is 83, I am 66. I had been working full time up to his real turning point last March. I have been cutting down gradually now on 12 hours a week working 4 hours each on a Mon, Wed and Fri. with set hours 9:30 - 1:30. This had been helping. However, I think he he now showing signs again of decline. A carer comes in for a 1/2 hour on each of those days to check on him. He used to be fine with it, but the past few weeks all he does is complain about it when I get home and some of the stories he makes up are pretty unbelievable! And yes, things are in a bit of a state, but so far nothing too major. I find that work is my escape and keeping in touch with the outside. Otherwise I would be very isolated. Thankfully my work has been very supportive. Yes, I feel very guilty about leaving him. However I also feel that no matter how much time I would give to him he would want more. I am going to try my hardest to stick with a job for just as long as possible. You have to give some thought to yourself as well. This might sound selfish on my part but I also know that probably in the not too distant future I will be forced to give up work.

Thanks Red Eyes. Yes very similar - my husband is 83 too. I am very torn as work has been a real escape but like you things are getting harder. My husband was diagnosed 5 years ago. He has deteriorated very slowly which is a very mixed blessing. I feel so guilty because I try and keep my work and other interests going while he is slowly becoming more isolated by the disease and our shared life has evaporated. If I was at home all the time it would not benefit either of us.
 

Amber17

Registered User
Sep 20, 2019
11
I just want to say to all those caring and juggling life and everyone’s post has made me cry and think I’m not the only one going through all that. It helps me understand my situation in some ways are better and some worst but still I’m standing.
I’m approaching my 40 soon and I’ve been caring for my mother for the last 20 years in her own home but since last two years she had a stroke and has had dementia she’s had to move in with me due to needing full time care. I work part time, Have young children to look after too. Husband isn’t in the best of health either and he needs care too. Life isn’t the same anymore I can’t switch off both physically and mentally exhausted.
Work is break for me otherwise I’d have a complete breakdown, my colleagues are in their 60’s and fully understand the pressure of caring for someone with dementia how mentally challenging it can be. Sometimes I wish I could be left on a island with no worries, I don’t know what the future holds but one peace of mind I have is my mother is with me no matter how hard it is.