Hi Everyone - Newbie here although 8 years into full time caring for my husband how has Young Onset Alzheimer’s Disease. We are both now in our early 60’s - still too young for pensions!
I am interested to know whether anyone else feels the same as me for a presentation I am making at the upcoming Alzheimers’s International conference in April.
My husband and I were both self employed and loved our jobs - Landscape architect and me - fashion design. When he was diagnosed I had to put my signature next to the word ‘Carer’ and I will never forget that moment. It was as if I - the person I knew - disappeared - and this new care facilitator emerged. My job was over, my identity as an enthusiastic and creative person was gone. I was now the person who took care of a very sick man. I do not resent that at all and fully accept that this is my job. However - I do resent 8 years of pity - oooo poor you - how do you do it? Life must be so tough etc - you all know the words. Yes it is awful - its the hardest thing I have ever done and financially I am terrified of the future. However - I feel that I - the carer - am being kept upright and functioning in order to prevent this task being foist on the state. It’s all about - taking care of myself , and respite (jokes - prohibitively expensive) and self care to keep me physically fit for the job. At no point has anyone ever asked me about the previous iteration of myself - how I feel about giving up a job I had created and nurtured for 45 years, how do I feel about losing my skills - my contacts - raison d’etre. my income! I wish those in charge of nurturing the Carers - charities - social workers, could address us in a more positive way - somehow encourage us to keep connected to our old roles. I also feel that the overwhelming attitude of those who care for the carers is on a one way street - no one asks me what I have learnt through my experience - the incredible life hacks I have developed to get through each day. We as carers are an untapped resource who should be treated with greater respect for our in depth knowledge of whatever situation we are dealing with and our pre carer professions and work experiences.
Hi @maryclare welcome to the forum. You are 100% correct when us classed as unpaid carers lose our identity, no one seems to understand that there are two types of carers, paid and unpaid. We all do the same job as a paid carer maybe more depending on who we look after but also those extra hours we put in just to keep our houses going. I do feel we get put down, written off and more should be down to get us treated with the same respect. Even when they did that clap for key worker’s we were forgotten and not included. If it was not for us the NHS would be swamped with bed blocking but also for care as well.
I hear you, I only became a carer officially last year but been doing it all my daughters 8 and a half year life.
The first time I said to someone “I’m a carer for my daughter” felt odd, I’m still getting used to it. I’ve lost a lot of myself to I think.
How are you @maryclare? What have you learnt from being a carer? I’d love to hear it
I find it interesting as Graham introduces me at medical appointments as “This is Chris, my husband and my Carer”. Some people speak to me, others grunt then ignore me. If I am ignored I wait til an opportune moment and then ask a very pertinent question which stops them in their tracks as they realise they HAVE to answer. On one occasion I added - yes, you see, I DO know about his ailments and THAT is why I am here - to ask the questions Graham forgets til after the appointment… now…’ and smile… Otherwise I am invisible like most unpaid carers.
Gosh thats a big question - well lately I have taken up reading about stoicism - that is a good leveller when I feel I have a raw deal - It gives me a different perspective. When I say read I mean literally sound bites as I have forgotten how to read anything of length. I think there are two issues here - how to learn to cope with being a carer and how to cope with losing ones self.
I have learnt that actually to care for another human being is probably an amazing thing to do - but I would never choose this - I don’t feel like a natural. It is a hugely undervalued job. I have learnt what true patience is - and this is not part of my nature and its hard but it works. I have learnt the extrordinary impact that music has on my husbands brain - an instant reboot. i didnt realise that a lifetime of creative work which is suddenly stopped would be frustrating and bad for my mental health. I have learnt to be less judgemental of others - most people have complicated lives even if they look idyllic. So many lessons learnt about myself but also lots of hacks about how to cope with everyday conundrums
I also can’t read for very long anymore, pre-I being born I would read for hours and hours, on the train to work, in the library in my free time, now I can barely manage more than 5 minutes.
I think it is amazing, and some days I still wonder how i do it! Like @Chris_22081 said the amount of people who ignore it or think it’s not a proper job, especially as I gets older and supposedly more able to advocate for herself and yet she still refuses to talk to these relative strangers to her so I answer for her.
Stoicism is the best way to describe it, I just googled what that meant and it fits perfectly. Now you’re teaching me things, that’s really good. What a great forum this is
Welcome. My son was brain damaged at birth, fit as a flea but unable to read, write, or do any maths. It has been an uphill struggle. Denied a proper career due to lack of respite, I share my skills in other ways. Be sure to claim all the benefits you are entitled to, especially PIP. Once this is granted your husband may be able to claim exemption from Council Tax. I give this advice to anyone caring for someone with dementia as some councils neglect to mention it. Money can’t make people better but it can make life easier. Be kind to yourself, some days can be more difficult than others, especially if you are tired, and on days when you mourn your old lives, grieving is natural. We are here for each other on difficult days, and if someone asks “how do you…?” Someone will usually know. When my brother was dying abroad I asked about cheap phone calls and had an answer within 10 minutes!