Home from home

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“Help, mummy, help me.” The shouting had been going on so long I finally began to switch off to it. Another resident, who was suffering from some degree of dementia, was obviously confused. I was staying for a weeks respite at a nursing home. From my room I could hear the regular visits from care staff to the room of the person shouting, reassuring them and trying, without success to get them to stop calling out. Only time was effective at stopping the shouting as I found out over the week. Their calling was a regular punctuation to the day and night over the week. How the care staff, as busy as they were, managed to stay patient and understanding all the time, I’ll never understand. I was only there a week and I’d had enough. I wanted to shout “shut up!” At them. If you think you would be more patient, try it out, have someone call out day and night at random times.

Nursing homes are probably the most unsuitable place for me to stay, but the only place adult social care will fund. I need nursing care, so a normal care home is unsuitable. There is only one nursing type home that is suitable in this area and it doesn’t routinely take adult social care rates. I am left with standard nursing homes, these are mainly filled with elderly patients with dementia. As you can imagine I don’t have a lot in common with the other residents. Mind you it does make me a novelty with the carers. At first I was complimented by the fact they thought my skin was so good, until I realised they were comparing it to other residents who were at least in their 80s.

Most of my time is spent on my own, either in my room, or in the garden. There is no one I can socialise with. My day is therefore punctuated by visits from carers. Two in the morning to wash me, one bringing breakfast, one at lunch, one at tea, two getting me ready for bed. In between I watch Netflix on my iPad.

I normally cause an issue in most nursing homes. I need lots of power sockets for all my electronics and they often have only one by the beds so I now have a multi USB socket. My iPad, smart watch, phone, Alexa plus wheelchair and wheelchair ripple cushion all need plugging in, plus I have an electric toothbrush. My bed side table ends up resembling an electronic work table full of wires and gadgets. I do like gadgets, but I also find them extremely useful in my limited condition. A smart watch is brilliant when you need to easily check messages. The Alexa is an essential disability aid. I can call for help, even in a collapse, or check any number of things while waiting to come round. It acts as an entertainment centre, but it also connects to all my smart home stuff. So at home I can control heating, lights and cameras on external doors.

One nursing home I stayed at I ended up helping a visiting lady from head office sort out the wi-fi setup. I’d been having problems connecting, so I did some trouble shooting from my bed. When she arrived, I found they had sent a none technical person, so I explained the problem and how to fix it. I have worked with computers and networking for years before I was ill, so it was simple for me. It’s always good when I can achieve something helpful even in my limitations.

Let me describe a typical day in a nursing home. I wake around 4am or 5am, that’s my usual time. Ring the call bell. You would not believe the image on many call bells. They have 1960s style female nurses in mini skirts, sexist or what? Someone looking totally different to the promised image turns up. Then the joys and embarrassment of using a bedpan begin. I won’t describe it in detail. But just think about what it would be like having two people, they have to call a second, help you onto a bedpan or commode then off it and wipe your bottom. Think for a moment about the procedure that would be involved in that. In some nursing homes I have to use a bed pan on the bed with all the balance issues that involves, in others I can be hoist onto a commode. Yes it’s all as unpleasant as it sounds. For me the worst bit is that when you ring the bell first time one set of carers come to help, then when you are finished and ring again you don’t know who will walk in the door. Will it be the same people or two complete strangers you’ve not met yet. Night staff tend to be bank staff, so you don’t really get to know them all. I don’t enjoy it at all, would you?

After this I ask for a first breakfast. I am like Winnie the Pooh, I have first and second breakfast. I’m probably full of fluff too as I always have fluff in my belly button. My first is coffee and a slice of toast or bowl of porridge. I then watch Netflix till the two carers arrive to get me ready for the day. Typically that varies between 7:30-9am. When you are on respite you are last on the priority list.

I covered what it’s like to be washed and dressed by two people in another post. After being dressed I either get hoisted into my wheelchair or stay in bed. It depends how well I feel and what’s happening. I can only manage a certain amount of time in my wheelchair, even now it has a battery powered ripple cushion. We will assume this is a day I have got hoisted into my chair.

Second breakfast comes next, again in my room. Then I would explore the less used rooms or go into the garden, weather permitting. I avoid the more used rooms as I have found from experience that the other residents look puzzled at me. I put the battery powered Alexa on my lap tray so I can call for help if needed to the one I have left with the office. My lap tray is a Trabasac which fits by straps to my wheelchair and acts as a beanbag tray and a bag for my wallet, iPad and phone. As I mentioned in a previous post, you won’t be surprised that Trabasac sell trays for pushchairs too.

Normally I request to be hoisted back into bed in time for lunch. In most nursing homes once you ring the bell there’s a wait. How long depends when you ring. If you ring during the morning rush, when everyone is being washed and dressed, it’s a very long wait. If you ring at one of the handovers between shifts, again the wait can be long. At other times it is normally really fast. At least it is for me. I’ve noticed that some residents don’t get answered quite as fast. But, those same residents seem to press the bell an awful lot, maybe that’s why.

Lunch, like all meals in a nursing home is OK, about the quality of a café or a low star restaurant. The meals are small, which suits me as I have a small appetite. I have to have someone with me when I eat. This is because if I have a collapse while eating I could choke. It has happened at home and Mary removed the food from my mouth. At home Mary or my carer are always a few feet away, so in a nursing home a carer has to stay near me too.

The afternoon is a repeat of the morning. I sometimes have visitors, which is great. My day generally is punctuated by collapses. I keep a running record of them, looking for patterns. I have between 2 and 6 per day up to 20 minutes each one. It’s the quiet days where I have 2. Due to the stress, noise and disturbance of being in a nursing home I generally have 6 a day while staying there.

Tea time, again a carer has to sit with me. Nursing homes give you a choice of food for the next day and I do like that choice. The thing about being in bed or a wheelchair all the time is that food becomes a big focus of your day. You might think ‘food is a focus for me.’ but this is different, I mean it occupies a large part of the day because there are not a lot of other things happening. There is a tea and coffee trolley normally morning and afternoon, but I can ring for drinks anytime. I tend to find that once the ladies doing the tea trolley find I have my mental faculties, they spend more time in my room chatting. One of the younger carers kept appearing in my room to chat. I thought she must be on a break each time until one time a supervisor came in and said “There you are, we’ve been looking for you, you’re meant to be in room 6.” I would like to claim it was my witty repartee, amazing good looks or animal magnetism that kept drawing her to my room. But, I know it was two things, a desire to escape working and the novelty of a resident able to chat normally. She is a very nice young lady but just not suited for care and she no longer works in it.

The time I get ready for bed is up to me but if I time it wrong and hit a busy moment or handover I can have a long wait. So, I normally get ready early, before 8pm. Getting ready for bed is not just pyjamas, again with two people, but also tooth brushing and preparing my CPAP. I have sleep apnoea on top of everything else. A CPAP is a device that feeds pressurised air down your nose and throat to keep your airway open all night. This prevents the episodes where I stop breathing. Sleep apnoea is where you stop breathing many times an hour during the night. Your body eventually kicks in with a gasp and starts again. But it causes an oxygen drop and heart rate race each time. It’s dangerous and disturbs your sleep. Without a CPAP machine people fall asleep at the wheel of cars or lorries and it can cause all sorts of health problems.

Once the carers have got me ready for bed at 8pm I don’t actually go to sleep till about 10pm. For me in a nursing home I don’t get a very good nights sleep. When I first stayed there I used to get woken every 2 hours by nurses checking on me. Some actually asking “are you OK?” They had gone before I could respond “I was till you woke me.” It took a while till I realised the reason. Because I have bed sides and a CPAP the night staff automatically see me as a risk that needs checking on. The problem with being in a nursing home full of dementia patients is that even when I first realised that and told them not to check on me. I got the response “yes, that’s fine.” In a pat you over the head, patronising way. They thought I had dementia because they didn’t read my care notes, so they ignored my request, thinking I didn’t know what I was saying. I had to have the day staff cover it at hand over to ensure I wasn’t disturbed. Even then one over zealous night nurse still popped her head in quietly one night, forgetting the door is not quiet.

Overall I do not enjoy nursing homes for respite and would choose to stay at home with 24/7 carers. I don’t get much sleep, I find it stressful and difficult. I certainly don’t enjoy using a bedpan or commode with a constantly changing audience. It would cost adult social care nearly the same to cover 24/7 at home care through some agencies, but the system doesn’t allow it. Less money is available if I am at home than if I am in a nursing home. It’s one of many peculiarities of the social care system.

One last comment on Nursing homes. I don’t enjoy staying in them because they are unsuitable for where I am mentally and not setup for my physical needs. But, everything I have seen while staying at different ones tells me they are safe and pleasant places to stay. The staff are incredibly patient in difficult circumstances. The food better than I expected. The environment pleasant, especially the gardens. I don’t fear a time when I might need to be in a nursing home full time. It just doesn’t suit respite in my current situation.

One of the nursing homes I have stayed in.

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