CARERS AND CARED FORS.
A CASE STUDY
Elizabeth and I nursed both of our mothers in our home for the last three years of their respective lives as they had looked after us during the first three of ours.
We made the same promise to both mums that we honoured…we would look after them so long as it was safe for them and us to do so.
What follows is a case study of the last three years of my mother’s life. I hope as she would have hoped that this will help you to come to terms with an increasingly common problem- caring for loved ones in your own homes - children, wives, partners and parents, just as we did.
1986. After 45 years in the same house in Gorleston on sea, we persuaded her to move into a new ground floor flat here in Stalham.
1986-2003. She was active but ever a private person “being alone and lonely are two different things,” she happily went about her business.
2004. Fall in flat. She was not hurt but it was only her neck pendant alarm that alerted us to her predicament. By common consent it was decided to sell her flat and move in with Elizabeth and I.
2004-06. Her circle of movement slowly contracted. Bus trips gave way to staying in the village, free walking to a four-wheel walker to a wheel chair to a push round the block, our bath gave way to a shower, a stairlift became essential until at last we converted her bedroom into a bedsit. By then we were taking her meals to her. She developed a fear of wetting her bed and at one stage was ringing her bell every hour during the night. Then came double incontinence, increasing physical disability and decreasing mental alertness-she ceased reading her newspaper and damning all Tories. We now found ourselves nursing her 24/7 and although there were two of us we were getting increasingly tired through lack of sleep, nursing duties, extra shopping, running up and downstairs with loads several times of day and night, remembering that we were in our late sixties ourselves. We found it very difficult to pursue our hobbies and interests as mum slipped further into decline and us knowing there would be no light at the end of the tunnel.
So, what had we discovered about homecare that we would like to pass
1. THE CARER IS AS IMPORTANT AS THE CARED FOR!
If the carer cracks up, who will then do the caring?
So, IF POSSIBLE…
1a. Build up a circle of support based around relatives, local surgery, friends home delivery services, societies caring for specific problems like Marie Curie, Macmillan, Alzheimer’s, and of course, Age Concern. In Norfolk there is Norwich Carers Support online and hopefully other counties have the equivalent.. This covers a lot of bases all of whom offer advice and backup.
1b. Do not abandon your hobbies. Keep your mind active, and always try to find out something you did not know before.
1c. Never turn down the chance of a break. Even 3 hours respite is precious.
1d. Keep your friends. Do not become an illness bore. You will find this very difficult, so make it a rule never to raise the subject in conversation unless pointedly asked.
2. Never underrate what you and all other carers are doing in saving the state from bankruptcy. In Norfolk alone there are an estimated 80,000 people being cared for at home by relatives, many of the latter, children still at school. Assuming a minimum of £3,000 per month+ for a place in a care home… Multiply this by 52 for the year… and this is for just one county alone! Now imagine the consequences if the carers for those 80,000 people abandoned all of their charges on the Norfolk Show ground and said, “Over to you, Mrs. May!” Need I say more?
3. And while on the subject of finance…
DO YOUR HOMEWORK! The best source of advice that we found was the local carers’ group. This consisted of others like us, some with far greater problems, others with less. They were the people who had been there, done it and racked up a huge collection of tee-shirts. They had come up against all the problems, knew the best sources of advice and above all had developed wheezes for overcoming shortcomings in the system. They were our best guide to the entitlements you too must never fail to claim. You are making huge savings for the NHS. They are yours by right. If necessary get angry and don’t forget that every little battle won is for all others less able to stick up for themselves as well as you.
Mum began to have falls. Although she weighed but 8 stone, Elizabeth could not lift her and I was frightened too for fear of hurting her in her frail state. A move into a nursing home in the village was inevitable. We just did not have the facilities to look after her safely any longer at home.
Mum settled and was clearly well looked after. One of us looked in every day to see her and she was enjoying the company.
She liked sitting in the sun outside but took only one trip out into the village in her wheelchair. She looked forward to visits from us and grandson Andrew but her memory was beginning to fade. She was taking noticeably less interest in her television.
As usual, one day I took in my lap top with photos of Gorleston including one of the house where she had lived for 45 years. She did not recognise it. Then came one of the two worst moments in my life. I went in to see her and started chatting only for her to ask me who I was!
First week…early Christmas Party at nursing home. Mum perked up and enjoyed it but passed away on the 17th.
I got the call that she was sinking fast but could not get there in time. However… since my father had died forty years earlier, by custom I was left head of the family (at least in theory!) Thereafter every time we met, mum and I always had a glass of Scotch together. When I went into her room to see her at peace, there was the bottle and there the two glasses. Without hesitation, I had my last drink with her and proposed this toast…
“Mum, may those who come after us stand as securely on our shoulders as we stand on your’s.”
Ten years on and I still miss her.