June was another month of major change in my care regime. I have now moved to a 24-hour care system so there is at least one carer with me at all times, day and night. I was urged by my medical team to move to 24-hour care on leaving hospital in April, but initially I wasn’t convinced of the need, and our care agency couldn’t provide 24-hour care so it would mean a complete change of personnel. Eventually, though, after exploring various compromise options, I succumbed and agreed.
One of the saddest aspects of the change was saying “goodbye” to my previous carers; lovely people, several of whom have been coming here regularly for the last 18 months, so we got to know them well. I received several farewell hugs, some of them even a little tearful. And then we began to meet the new team. They, too, are lovely caring people who, two weeks on, we are getting to know.
Moving to 24-hour care has several implications. Someone sits with me all night in case of any problems such as with the ventilator, and to assist me if I need help with anything, using the urinal bottle being the most common requirement! Doreen has moved into the spare bedroom, and we have an armchair for the carer where her bed was. It does mean Doreen now has uninterrupted sleep at night, and if there is a problem with the ventilator, I don’t have to worry that Doreen won’t be woken by the alarm!
A major advantage of the new regime is the regularity of the shift rota, with overlapping shifts providing two carers for an hour to get me up, washed and dressed at 7.00 every morning, and put me to bed at 10.00 each night. With the previous system of peripatetic care teams, their scheduled arrival times were often irregular, while the variable duration of preceding calls made actual arrival times unpredictable. Providing care 24/7 needs a team of at least 5 people working full time. Allowing for annual leave, training, sickness absence etc. takes that number to nearly 6 people. It is quite overwhelming to think that 6 people’s employment is entirely devoted to my care.
The new fixed gantry hoist arrived this month, making life easier for the carers. Sadly, though, my stand-aid hoist has finally been ‘confiscated’, so standing up is now a thing of the past. I have particularly long legs, which means I don’t appear tall sitting down, so the surprised comments when new people first saw me lifted to my full height used to amuse me.
On the subject of hoists, one of the things that most worries the MND medical team is weight loss. Pre Covid, I was always weighed at the MND clinic, but that’s not possible with virtual clinics, which still continue. At first I was able to get onto our bathroom scales before each clinic but that became too difficult about 18 months ago. Perturbed by this lack of critical data, they decided to send someone out to weigh me using a scale that fits between the hoist and the sling. Unfortunately, with the extra length introduced between hoist and sling, the new gantry hoist couldn’t go high enough to lift me clear of the wheelchair. Undaunted, we then tried the mobile hoist, which we still have, but that too wouldn’t go high enough either. Eventually, by transferring me to the bed, and lowering the bed as much as possible, we were just able to get a reading. It appears I have lost about 7-8 kg since last weighed. That must all be muscle wastage as I’m sure my stomach isn’t any smaller!
Finally, a quick update on the fish in our pond: Our original ‘big white’ fish is active and easily visible but our new smaller ‘camouflaged’ fish still hasn’t been spotted. Perhaps I underestimated the heron’s local intelligence network!