My health is not good but I continue to care – Hardest Hit

A mothers tale – In memory of Rhys

I have been a Carer for 25 years, for four people at one point, now just two. I manage, I cope, as we all do, when things sail along as usual, but over the last months, worry about benefits in the future, grief for the son I lost (through a totally preventable cause), sadness after my father’s death are all taking their toll. My son’s inquest gave me no answers; the only professional person who looked respectful at the time was the Social Worker. (He gave me faith that some people are in their job because they care).

Now I am struggling.

My health is not good but I continue to care. Hospital appointments, day centres, Social Work appointments, finance, food shopping, secretarial, taxi, nursing, dietitian, all the things that nobody ever thinks to tell Carers that they will have to do, ON TOP of the everyday physical caring, washing, dressing, toileting, making decisions for, cooking, phone calls, the list is endless.

Two months ago, my husband and son, both type 1 Diabetics as well as having other disabilities, did a course, to help them keep their diabetes under better control. It was a wonderful course; it taught them a lot about carbohydrates, they had new blood sugar machines to aid them. My son, who also has Downs Syndrome, can use the blood sugar monitor with the smallest amount of help. It calculates his carbohydrates for him. He has to test 9 times a day very basic. When he goes out through the front door, he needs to test more often, if he goes swimming, horse riding or walking, he needs to test before an after activity. In fact, he could end up testing up to 12 times a day, IF his blood sugar stays within the normal range. If his blood sugar goes up or down, he needs to test around every ten minutes.

I have been battling to get enough blood testing strips on prescription for this wonderful machine. Yesterday we were told that my husband and son could have a maximum of 200 a month each. That will make a maximum of 7 times a day. I have now hit rock bottom. I phoned the manager of the surgery and she told me she was out of her depth within my reasons, and she would ask the specialist nurse at the surgery to contact us. They have not done so yet.

I have contacted my son’s Social Worker and Learning Disability nurse by email overnight too. I CANNOT cope any longer.

I can only care, as long as I have the tools to do the job, and I do not have the strength to fight any more. I am ready to hand over the reins. I have lost one son, and my heart is torn apart that I am not getting the support I need to continue to care for the other. If he stays at home, and we have to pay for the blood testing strips, then he will be unable to go out with support workers, as it would have to come out of his benefits. I have not heard back from the Social Worker or Learning Disability nurse, hopefully they will contact me later today. I have not heard back from my MP, I have written to him twice. I love my son, I feel as though I am letting him down, but I have no fight left in me. Even on the day my younger son died, I had to continue caring. I have NEVER been able to grieve properly for him (or for my father either).

Jane

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