Conditions on the ward, similar to the other wards he was moved to, were of constant interruption for medical procedures, background noise from outside the ward from disturbed patients, other patients’ visitors’ loud voices, and some ward patients’ loud arguments against the system. Bright lights and electronic beeps and wards crowded with people and constant movement. Sleep was nigh impossible, so I brought him home for that.
John's wife
Severe ME Story – John's wife explains a recent hospital visit
My husband, John, aged 81, has had ME for 3 years, and 9 months, following a bad virus picked up on holiday in Greece at the same time as traumatic issues in the family and serious theft at home. He has been in hospital for 8 days, due to two infections at the same time. He came home in an ambulance after a very long wait, arriving at 9 pm – beyond exhausted.
He has been home now for 10 days. Since this hospital stay, he has no energy, is bedbound and extremely weak, and exhausted by the slightest effort.
Over the five or so weeks prior to his admission, he was capable of walking, with help, short distances, could use a Rollator as a walking aid, and on three occasions could join a small group of people for a social occasion away from home, when we used the Rollator like a wheelchair. He enjoyed talking to friends, neighbours, and carers at home and could use the stairlift and go outside with one of us.
While he has had marvellous and dedicated A&E and ward staff who worked hard to give him the best care – to me, the key is the lack of awareness in the hospital of what ME sufferers need while hospitalized.
As John’s wife and registered carer, I tried as tactfully as I could to explain about ME to several layers of staff. The nurses were upset and defensive and thought I was complaining which I was not. They said they knew about ME. On the ward, their joint principles of nursing were to treat all illnesses the same. Senior staff asking me for information in general about my husband listened and said they would pass on the valuable information I had provided.
On the ward, after 2 days of leaving John in bed to sleep if he wanted to the nurses put him in a chair in the mornings – this disrupted what passes for him as a routine – to sleep through the morning. The system’s care principles cannot allow for adapting to individual needs or asking about them. Nor could they take into account the issues around cognitive dysfunction which mean John is usually not able to understand straight away and so answer the questions they ask him, and so the need to use me as a sort of filter for the exchange of information with John. They were concerned to encourage independence in patients. All they asked me about was basic stuff like ‘Does he do this at home?’
Conditions on the ward, similar to the other wards he was moved to, were of constant interruption for medical procedures, background noise from outside the ward from disturbed patients, other patients’ visitors’ loud voices, and some ward patients’ loud arguments against the system. Bright lights and electronic beeps and wards crowded with people and constant movement. Sleep was nigh impossible, so I brought him home for that.
He is now a wreck of the man who went in. Fragile, extremely weak, can’t walk, exhausted upon exhausted, bed-bound, incontinent, often unable to speak or express his needs. This is exactly how he was – except for the incontinence – last August following the horror of a 30-hour stay in a packed A & E due to dehydration from the 2020 high heat.
It has taken us almost a year since then to reach the stage he was at before this admission. We have lost all that and now have to start all over again.
I see no possibility of the Hospital being able to become ME friendly. I think they don’t have the means. Yesterday, I said this to the Adult Therapy Team Physiotherapist who was arranging to come and see John. She said, ‘I hear this a lot.’
In this part of the North West the only centres dealing with ME – or Chronic Fatigue Syndrome as it is referred to – tend to be in Psychology Departments and lean towards Graded Exercise Therapy (GET) and Cognitive Behavourial Therapy (CBT).
N.B. The featured image is a stock image of a gentleman in a hospital
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