Page 32 - TalkingCare_Issue3_WebVersion_OACP Winter 2017
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                 Home is best? The experience of one carer...
“I wanted to care for my husband at home
and I was grateful that he was able to die
at home. Even though I was five years
older than him, I was fit and able to make all the arrangements and nurse him. We had been left some money and I knew of five people who I paid to help me care. I also had the help of one care agency. I had never had to care for my parents ­ so I had a lot to learn!”
The beginning: At the outset of their care pathway ­ a patient and carer ­ may not be aware of the great number of contacts they may be required to work with or manage. Using the internet as a reference tool can assist in finding the relevant people, agencies, clinics, organisations and social activities. It was a
huge learning curve for me.
We were very fortunate that I was able to take on the role of ‘care coordinator’ or ‘web controller’ for my husband. I was also fortunate to have spent two years as a social worker in a geriatric hospital. If you do not have a family member prepared to take on the caring role or special friend to help out, it may be difficult to manage on your own as a loved one becomes less well and more reliant on you. My husband was told that he had Type 2 diabetes in 1997 and began injecting insulin in 1999. I started taking him to diabetic clinics every six months. We saw the dietician and spent a day learning about diabetes. From 2007 we visited more and more clinics. The geriatric clinic following a transient ischaemic attack (TIA) or ‘mini stroke,’ then the renal clinic. Following falls we went to the Falls Clinic. One of the reasons for my taking my husband to all these appointments was that his mind was not working properly as he had vascular dementia and so did not always understand his conditions. We were then referred to the Memory Clinic.
In 2011 my husband had to have an operation, which involved attending the Skin Clinic and follow­ups after the operation. Following another TIA my husband was admitted to A&E
overnight. Another admission followed this time we were referred to the Urology Clinic. Even though this referral was going from one hospital to another in Oxford we waited three months for this particular appointment. What was very frustrating was that it was impossible to find out when the appointment was going to be. The Patient Centre could not make the appointment and the department itself could not tell me anything about it. We needed the help of the District Nurse, as we had to learn how to cope with a catheter. During all these months we were very well supported by our GP. My husband attended the Eye Hospital many times as his diabetes damaged his eyes. He had one cataract removed under an anaesthetic as he was too anxious to have the operation without an anaesthetic.
As my husband gradually got worse we needed help from yet more people. From February 2014, following another hospital admission, we had help from a medical social worker to enable my husband to come home with ‘A Package of Care’. We also had an occupational therapist who arranged for hospital equipment to be delivered to our home, which included a hospital bed, and we had a Hospital Discharge Team to help me care until I could arrange for a private care agency to provide care ­ four times a day.
Life at home: Our life in 2014 revolved around a series of identified points of contact, various organisations and emergency services.
• Our own GPs
• District Nurses
• Care agency
• Five carers, all but one had trained as nurses
• Referral to Sobell House and regular contact
and support from their palliative care nurse
(such a help)
• Occupational Therapists ­ they closed our case
twice and I had to make new referrals. This was strange as they knew my husband was under 'end of life care’
• 111 when my husband's catheter blocked, and when I needed advice out of hours
• 999 to help my husband back to bed when he became unconscious
• Podiatry ­ we attended the clinic when we could get there. Once that was impossible I had to arrange for a private podiatrist to visit
• Dental care at home
• Eye test at home in order to enable my
husband to watch the TV
• To keep in touch with the renal clinic nurse
when we could not get to the clinic
• Arrange one week's respite for my husband at
Sobell House.
• Call to GP admission for 24 hours to medical
assessment unit
• Marie Curie Nurses for three nights
Family: My husband had four children. They all lived within 100 miles of us and they did their very best to keep in touch with us and visit when they could. Due to their jobs and family commitments they were unable to help me care for their father until the last week of his life
when the two younger children stayed with me. If I had not been able and available to care none of his children could have cared for him and he would have had to go into a nursing home.
My life: I gained much satisfaction from caring for my husband. I liked learning how to look after him. We were fortunate that we lived in a bungalow with plenty of room for the hospital equipment. We could afford to pay for the help we needed so that I could have a breather. When I had to go to an urgent appointment one of our carers was with me in twenty minutes. I was very grateful to the Oxfordshire County Council for giving us emergency cover if I had a problem or had an accident (it was only necessary to register with them). I was also in touch with Action for Carers and had help from their outreach worker who encouraged me to apply for the Attendance Allowance.
I had taken over responsibility for giving my husband his insulin injections and for testing his blood sugars. I could not leave him with someone who could not do this. This is not to say that it was not an emotional strain, I did get very tired. Because my husband’s short­term memory was so poor he got very anxious if I was away for a long time. Carers, like me, may also have other family who need their love and support. My older brother who lives alone in London lost most of his eye­sight when he was only 48, I had been in the habit of visiting him frequently. One of my best friends insisted that I continue to visit him. She would stay with my husband while I was away. She shared the day with one of my paid carers ­ a huge relief.
I decided to write this account, as I wanted to highlight what can happen when someone with chronic illnesses is cared for at home (every case/situation is different). We were lucky to live very near to the main hospitals in Oxford. I was fortunate that my husband was easy to care for. When friends phoned him, before he was too ill to answer, to ask him how he was, he would say ‘I'm fine’ ­ an answer that was bravely stated.
I have acted as next of kin to three friends who had no one to act for them. They all, in the end, had to give up living independently. In my experience there does need to be a person who coordinates all the different services. Otherwise the needs of the client/patient may not be met. As a long retired social worker, it would be my dearest wish if a position of ‘family care coordinator’ could be created and a person allocated to each family to assist them in managing the care pathway of a loved one.
Editor’s Note:
If you would like to write a letter or submit an article about your experience of care to Talking Care Magazine please go to page 6 to learn how to get in touch ­ don’t forget to add your contact details to your communication.

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