Am I being selfish? Any advice greatly appreciated

SparrowLON

New member
Jun 16, 2020
1
0
Hello - this is my first time here. I'm not at the stage that most of you are. My mum was diagnosed with Alzheimers / Vascular Dementia this time last year. I knew before then that there was something wrong (repeating the same questions, forgetting conversations from 5-10 minutes before, etc) but it still came as a shock to hear the actual diagnosis. I haven't really been able to get my head around what will happen in the future and the progressive amount of help that she will need. When do I give up my job? At the moment I can work from home but that's only temporary during the pandemic lockdown. I don't have any other family or partner to support me (apart from distant cousins) so I feel that all the burden is on me.

I realise that sounds selfish but am I allowed to think about my future too? I'm still of working age a good 20 years before retirement. How do I mentally and practically prepare? Thanks for your advice in advance.
 

jugglingmum

Registered User
Jan 5, 2014
7,111
0
Chester
When my mum had a crisis I never for a moment contemplated giving up my job to look after her, whilst some people can do this, I couldn't.

I was mid 40s and had 2 youngish children (7 and 11) so mum living with us wasn't an option (she could be quite spiteful to the children which pre dementia she wasn't). She also couldn't return to her house, so I found her a sheltered extra care, where I support her, do her shopping, take her to appointments and look after her finances. I work part time so was able to do this.

Others will be better than me at the more practical advice.

Have you got power of attorney ? Is your mum self funding - if so you can privately arrange carers and use your mum's money to pay for them.

If she isn't self funding you need to get a social worker to assess her - however you need to tell it warts and all of the issues, and try to get visits to cover what she needs.

Caring for a PWD is extremely hard work, they tend to not realise they need help, and not accept you are trying to help them (my mum is an exception to this and understands she needed support, although still argues with the carers over many things).
 

canary

Registered User
Feb 25, 2014
25,081
0
South coast
Of course you are not selfish. Any plans have to consider you as well as your mum - having dementia does not trump the needs of the carer (although we are all guilty of downplaying our own needs). If you ignore your needs, then eventually you will reach carer breakdown. I have been there and I dont recommend it. If you become unable to look after your mum, who else will do it?
 

Veritas

Registered User
Jun 15, 2020
318
0
My husband was recently diagnosed and I am thinking ahead too. We are both retired now, but were I in your shoes I definitely wouldn't start from the assumption that you'll have to give up your job. Of course you must think about the future - but that includes the time when your mother has gone. Planning for your own old age is important too.

The other thing I would say is that everyone's pathway through this is different, and so while there are phases/symptoms/behaviours at various time that seem to be commonplace, not everyone experiences all of them, and those that they do may not be experienced in the same way. At the moment, my husband maintains a fairly high level of day-to-day independence, in that he can cope with being on his own for a few hours at a time, but it is also clear that he absolutely could not manage for himself if he lived alone. He would need sheltered housing of some kind, with some sort of care support coming in several times a week. Your mother's path through this disease will be unique to her, as my husband's will be to him. So, for now, I am thinking about the practical stuff (eg timing of a bathroom refit!) but also making sure that 'me time' is built in so that as he becomes more dependent he has other people he can trust to look after him. I am lucky enough to have children who will be able to help (up to a point, they have jobs and lives too), but I am expecting that paid carers will be required eventually.

Whatever you do, this cannot and must not fall only on you. Your mother will be entitled to some sort of third party support and should get it. You as a carer are also entitled to have your needs taken into account. No-one can do this 24/7 all by themselves.
 

Citroen 2cv

Registered User
Mar 1, 2019
82
0
Spain
It is difficult when totally on own. I know I have struggled very much with the whole responsibility of everything. Since dad died sept 18 and we discovered that my son had emptied their bank account I have had the whole responsibility including financial we live in Spain and mums pension is small . There is not a lot of funded care here as care itself is still new. I myself work as a carer normally for 6 weeks at a time. So I was working to help clear debts and support mum and pay for carers coming home and caring for mum. It was hell as being long distance we had many carers who were not that honest. I moved mum into my home end of last year and since feb been her full time carer. It has got to stage where I believe she needs care home. Which I will still have to partially fund. Making this decision which will separate her from her little dog is breaking my heart. I need to work and have very much enjoyed my job. I am not retirement age yet either. It’s the decision making I hate having to make it for someone else . So I fully understand how difficult it is without family or a partner. You are not selfish but sorry you will probably have many times where you think you are. The whole experience for me has led me to carers breakdown.
 

Timebar

Registered User
Jun 13, 2019
22
0
Hi SparrowLON

It may be worth starting to speak with your employer about partly working from home going forward. You're already working at home now so a well timed conversation may be worthwhile. I work for a county council and they are using the current situation to plan working arrangements going forward, talking about using offices for team meetings mainly, not going into the office five days a week etc. They can potentially save money on buildings/heating/lighting etc.

Have a look at your organisations policies regarding staff with caring responsibilities. They may have to consider reasonable requests....forewarned is forearmed.
 

Whisperer

Registered User
Mar 27, 2017
386
0
Southern England
Dear Sparrowlon

Be clear in your own mind you are not being selfish. What you are doing is considering a very major future decision. Take your time. Your post suggests you are not yet at the point where an employment decision is urgently needed? You may ultimately decide to stop working and care for your mum full time, or continue working, assisting as best you can in your mum’s care, which is just as valid a decision. Full time caring or working whilst you sort out mum’s finances, shopping, visiting carers, etc, both are caring roles just one is more direct. Both involve personal sacrifices and each has merit. Only you can decide. Below I outline some points to consider, to start you thinking some more hopefully.

1) I am guessing you are say mid forties? Giving up work has significant financial implications as regards wages and your future pension pot. You would lose contact with most of your work colleagues, holidays will become harder to organise and finance. As the caring role developed you would more and more be mostly identified in that role, by the world and also by yourself. After caring for what could be a lengthy period could you get back into your field of work? Starting employment again in a new field in say your fifties would be a challenge.

2) When a decision is required would it have to be an all or nothing one? Could you then reduce your hours, work from home if the employer recognised you had caring responsibilities, allowing you to make an informed decision over time, not just step off a ledge. Any of those actions could deliver an alternative course of action to leaving employment, which most likely would remain viable for some time.

3) Remember if you decide to keep working full time that is your choice as well. Either decision is valid, choices you make, based on as much information as you can get and what you personally want to do. Do not let others sway you if you really think staying fully or partly employed is the best course of action at that time. It would be you making the sacrifices no one else. You need to be mindful of your own longer term interests. I gave up work to care for my mum, but I was nearer retirement age, pension sorted, no partner to consider, no dependants, looking back on matters a privileged position few others have.

4) Your mum would want you to have a life, but only you can decide what you want to do with it. Make a list of pros and cons, be honest with yourself about what you are willing to sacrifice, what you can take on. The worse thing would be to give up work in the future, become a carer and overtime regret the decision. That most likely would badly impact on your relationship with your mother? Have you discussed this with your mum? She might very strongly oppose the action you are thinking of taking. I do not know how advanced her Dementia is at present, but her view is an important one.

With outside carers visiting your mum when required (would your mum be self funding?), you helping where you can, you might find It is quite a way into the future before an employment decision is required, if you wanted to get fully involved with her day to day care. So many other things I could mention but no doubt others will later.

There is no right or wrong answer we all have to make our own decisions based on what we know about ourselves, our personal circumstances, etc.. Nothing to do with anyone else. Whatever you decide I sincerely hope it works out for the best, both for you and your mum. Your a lovely person just by thinking about the level of sacrifice you would be making. Your mum is lucky to have you in her life. Caring can be a rewarding experience, but Dementia is an illness that just keeps taking. Read some of the threads here to get a real feel for what caring for your mum might involve. IMHO try to postpone any employment decision, concentrate on gaining knowledge about the illness, arrange practical steps like Lasting Powers of Attorney, etc. Also enjoy your time with your mum now, before her illness gets worse. Best wishes.
 
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Weasell

Registered User
Oct 21, 2019
1,778
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I think at present Carers benefit is about £65 pounds per week.
Any decision to give up work is likely to have huge conquences for your you future.
Would one way to play it is in any discussions with social services you say ‘ its essential I keep my job’!
I would really fight to keep your job at all costs!
 

Weasell

Registered User
Oct 21, 2019
1,778
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Sorry didn’t fully answer the ‘prepare ‘ bit.
1, Arrange power of attorney both) as soon as possible.
2, Then apply for attendance allowance if mum is over pension age
3, Just start reading random forums. Bit by bit you build up your knowledge.
break big problems, into little problems and then post, everyone is here to help you.
 

Rosettastone57

Registered User
Oct 27, 2016
1,855
0
Hi @SparrowLON , don't give up your job. Seriously, just don't. When my mother in law was in the depths of her dementia, it never occurred to me or my husband to give up work. We both had full time jobs and we needed the income and our pensions. My mother in law was self funding and lived on her own. We had power of attorney and just arranged carers for her to get her meals, prompt medication and make sure she was alright. We never thought of ourselves as selfish and you're not either for wanting your own life.
 

White Rose

Registered User
Nov 4, 2018
679
0
Hello @SparrowLON
I was going to say the same as @Weasell get the practicalities/legal stuff sorted asap - power of attorney, wills, etc. Basic level of attendance allowance is usually available, not means tested.
I carried on working and cut down hours and upped the external carers help as the disease worsened - I'm furloughed but usually work 3 days a week, nightmare organising carers and day care and very expensive but worth it for my sanity. My partner is in year 5 since diagnosis and now can't be left alone at home for any period, he'll fret if I'm just out of the room or upstairs! It's VERY HARD.
Keep contact with friends and try to keep a social life - it's a lonely existence being a carer of a PWD.
This disease could suck up all your mum's money and your own - you need to think of your own financial security.
Be selfish - though you're not selfish as you're already thinking how best to care for your mum.
Read Hugh Marriot's book 'The Selfish Pig's Guide to Caring'.
Good luck and keep posting through the good times and the bad - it helps.