Caring for a loved one is a relentless, 24/7 commitment. Unless you have been in the position of having a vulnerable person depending on you for everything, is it difficult to imagine the life-changing role of becoming a carer to someone who, quite often, used to look after you. Yet this is a role that is unpaid, offers very few if any periods of respite or holiday, and makes no provision for sick leave, despite the fact that carers often neglect their own well-being because of their commitment to their loved one, making them much more likely to suffer health problems themselves as a result.
Unpaid caring is the ultimate example of selfless giving, and yet these people are taken for granted, their contribution often goes unrecognised, and many feel abandoned by the health and social care systems at the very time when they need the support of professionals the most.
Our experiences of caring for my father fall into the two most common ways in which family members support an older relative with a long-term condition. For 10 years my father’s dementia went undiagnosed, he lived at home and month by month increasingly struggled to complete simple everyday tasks. As his dementia progressed, he needed his family more and more, and we supported him as much as we could. We tried to get him the help he so desperately needed, generally failing on all counts due to the lack of understanding of dementia, until the ‘crisis point’ that I talk about here. Once that moment had passed, dad’s needs were far too complex for him to have any other option but to go into a care home.
I think many people make the assumption that if your loved one is in a home, you do not actually do any ‘caring’ any more, it is just ‘visiting’. I can assure anyone labouring under this misapprehension that if you are as hands on as we were in the last nine years of dad’s life, it is a full-time job. Granted the caring role alters, but the fundamental facets of it remain, plus you add many more to do with the politics of privately run care homes.
When your loved one is in a care home I think many people believe that all those battles for help and services, that you had when your loved one was living in their own home, magically disappear. Not so. You still have to fight for everything your relative needs, plus constantly helping and advising the care home staff, and monitoring your relative’s health and wellbeing very closely.
The unpredictability of the situation and the frequent need for out-of-hours services does not change either. I remember so vividly those unexpected middle of the night trips to A and E because dad was gravely ill; I would be tired as a rat, sick to my stomach with fear and dreading what may follow. Furthermore, because hospitals are not places where people with dementia generally thrive, you then spend every waking hour with your loved one so that you can feed them, assist with their personal care, educate the staff about them, and make sure they receive treatment that is appropriate to them.
Caring is a role that truly never ends. At every step of the way, from the early years of dad’s struggles at home, through his diagnosis of dementia and the years in care homes, to the very end, I can honestly say that caring for my dad was the one thing in my life that I never escaped from. In the meantime, I found that friends drifted away, relationships failed, my career was kicked into the long grass, and my peer group generally did not understand the devotion I felt and the duty I had.
One recurring theme I have always found talking to family carers is that however much you do, you always feel you could do more. Your maximum effort can still leave you feeling like a failure, and nothing you ever do can change the most fundamental thing that you wish you could alter, namely to take away the dementia, or whatever illness or disease they are battling, and have your loved one back again, as they were.
Given that no civilised society can exist without unpaid, family carers, it is remarkable that our supposedly very modern country undervalues this vital contribution made by the most dedicated and loving citizens that it has. The job description should read that you will be supported, helped and advised 24/7 to assist with providing the outstanding care that only those who truly care can provide. Love can do so much, but it cannot conquer all when it is exhausted, frightened, overwhelmed and alone.
That certainly hits the spot, Beth, and I'm sure you're describing poignantly the sort of life many of us carers have got.
ReplyDeleteThank you for your kind comments. All the best, Beth
DeleteSo much of what you are saying here resonates deeply with me Beth. The only diagnosis my Mum has had was effectivley a throw away comment by a locum GP at her surgery who, when I described what was happening, said 'she has vascular dementia, it will get worse. She needs 24 hour care'. She has never been referred to a memory clinic, the best she has had is a couple of mini mental tests on which she scored low. There is no doubt she has short term memory issues and she cannot rationalise or make the normal connections that we make without even thinking about it. Apart from now making a passable effort at getting herself dressed every day she cannot do any of the things she would need to do to sustain life without assistance. She can recognise her own thirst but cannot make the connection to go and fetch a drink or even ask for one. There is enough of her still here to tolerate her care home and I think she understands and accepts that she cannot care for herself and neither do I have the physical and mental strength to care for her at home (I have health issues myself).
ReplyDeleteYou are right that caring does not end when you walk out of the care home having deposited your relative to their tender mercies. I/we do not visit every day but I do bring mum to our house twice sometimes three times a week and call in to see her if I am in town. I feel embarrassed and guilty to say that I do not visit every day , especially when I think of the joy on Mum's face when she opens her eyes from dozing and sees my face. She is constantly in my thoughts and the guilt never leaves me. It eats away at you and will not be quietened. As I said before, Mum's time in her care home has brought some improvement but we daily live with the knowledge that more strokes are likely and we wait for 'worse' to come. We have not had any support from anywhere, although to be fair we have not asked for any. The initial contact with a social worker at the hospital that threw her out was the one light in this dark tunnel of dementia. She gave us a string of sound advice and told us, above all, to take our time. We don't mention the 'D' word in front of Mum and refer to memory problems from the stroke although I now feel certain she had been experiencing dementia related problems long before the stroke/crisis point that took her to a life in care.
Your final paragraph hits the spot. I appreciate what you are doing to raise the profile of this terrible disease/condition/illness that has and will have such long reaching effects through every family touched by it.
Hi Julie, thank you for your kind comments and for sharing your story. I am so sad to read what you and your mum are going through. Sadly dementia services remain very much a postcode lottery, and it sounds like your mum came out of that very badly indeed. There are pockets of excellent practice but they are still not replicated across the whole of the UK.
DeleteAs carers we all do the best we can, and you sound devoted to your mother. There is so much more to having a loved one with dementia than the physical caring part that happens when you are with them. Coming to terms with what is happening and managing that in your own mind is a constant process that affects the whole of your life. It is very easy for me to say, but try not to be too hard on yourself, I have taken that path and it is very draining on the energies that you need for your loved one.
Take care, and I wish all the very best to you and your family, Beth
I found that post so true, especially about some peers not understanding, which can be a v lonely feeling.
ReplyDelete2 things - one in reference to Julie. Age UK in my area has a dementia support nurse, and I have found her support on the phone and at home has literally kept me sane. It is v important that you do ask for help, both for your mum's sake and yours. I also recently cried at the GPs about the lack of support, and they said they would ask an Admiral nurse to get in touch with me.
Re being unpaid. My husband and I have 4 children and I gave up my part time work 3 years ago to support both my elderly parents, who manage day to day but cannot cppe alone with their frequent hospital appointments, paperwork etc I haven't earned anything for a few years and things are very tight at home. Recently a carers' charity visited my Dad to assess if they could give him a one off payment of £200, as 85 year old carer for my Mum, and I came along to help him answer questions. At the end of the meeting the people from the charity turned around and said 'you are the carer here' and asked if I received carer's allowance. No one had ever asked that before. They sent someone to interview me, and I was encouraged to apply. I kept explaining that I didn't, for example, wash my parents, but they said that all the organisation, support and help I give them allows my parents to live independently.
Although we need the money I do feel guilty about applying, but am going to go through with it as we are eating into our savings just to keep going. So I'd like to say that for others reading your excellent blog, it may be worth asking for help and citing my case, and maybe other carers can get something to help them cope with the financial burden that often comes on top of all the other ones. I have to say I haven't yet got this allowance, and I do find it stressful applying, but the charity believes I should get it.
I also should say that I didn't even know this charity existed until a social worker recently assigned to my parents after my mother and father threw away her medication by mistake, got in contact with them and asked them to visit my parents. So it is worth keeping on asking - some times there is help out there we don't know about.
Beth, thank you for being here.
ReplyDeleteGood post.
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