Nursing Home Dweller

In Recognition of a Lasting Legacy

Rebecca J Armstrong‘s column in the ipaper titled This Hero Died 25 years ago But He Has changed Our Lives (Monday 16/10/17) discussing marriage, being a carer, and her husband Nick’s life changing neurological disability, was of particular relevance to me. Like Nick, I also have lived in a home that bears Leonard Cheshire’s name, since spring 2016. I first heard of the man himself, and the homes which he founded when my then NHS social worker was looking for a suitable respite placement for me. This was complicated because, although I have a neurological disability, I don’t have learning difficulties. In fact, I was living in my adopted home town having completed a masters degree in Disability Studies there. I was also relatively young, being in my early thirties, but living with ever more complex physical and mental health needs. A placement was found, in a Leonard Cheshire home some 40 minutes drive from where I’d been living semi independently for almost 7 years. It didn’t even cross my mind that I may not return, desperately hoping a break from the relentless stress was all that was needed.

A Hesitant Beginning

I arrived on a lunchtime in Spring 2016, feeling utterly terrified, and completely in the dark about what to expect. For the first few days, I crammed in more sleep than I had in weeks. I quickly found things to joke about with care staff, though I don’t remember what now. The whole week was and is still a blur. One standout moment was the realisation that without more care than local funding was willing or able to give, I would struggle to cope when [if] I went home. Accidents of both bowel and bladder were happening frequently, exacerbated by extreme fatigue and chronic pain. I was, and still am, unable to empty my ostomy bag reliably (without dropping it, or without noticing it had overfilled to bursting point). I’d tried countless ostomy products, but only two products at that time accommodated my unusually large stoma, neither satisfactory given the constraints of my disability.

I’ve been brought up to face life head on, so at the end of the week was honest with the then manager about my predicament. After some discussion, he said if I decided to stay there was an en suite free, meaning all my medical and/or physical care needs, bed days, and all could be met in a contained space, reducing infection risk. Being young, and determined to see the positive and humorous side to life as often as possible despite my circumstances, were a plus for the home… A conversation with my NHS social worker, and a hasty visit from my parents that weekend, preceded the funding application… approved in record time! I moved in permanently, into my new room three days after finishing the respite placement. My needs did present staff with new challenges, too, a good thing in advancing training and development. The move did however have a catastrophic effect on me.

Loss, Life and Living

JD at Beechwood May 17
Portrait photo of myself, snapped by my Mum, 5 months ago, in the nursing home where I live.

Adjusting has been harder than I’d ever imagined it would be, partly because I’m still adjusting now. The loss of independence, fragile though it was, the loss of dreams, the psychological hit of living in care so young, sometimes still feeling misunderstood as my needs vary dramatically day to day. I’m clean and cared for physically though mental health training was lacking… which I helped to combat by sharing with staff the effects of pain on mood, reactive depression, and loss, through sharing my story. Staffing shortages at present are making life harder for residents though I’m hopeful of this being resolved in the next few months. Being young, I still want to feel as though I’m truly living, not content to simply let life drift past me. Still searching for ways of doing this within my constraints, or perhaps in spite of them. When mentally ‘well’ I have much spirit and gumption to rise to a challenge, much like the person who founded the place I’m slowly learning to call ‘home’.

On Hosting and Hospitality

My old flat (apartment) was my safe haven from the world, my place to hide. The urgency with which I’d roll in from outside, heaving a sigh of relief, the peace swaddling me, silence surrounding me. I could chose when to break the silence with voices, be it tele, radio, Skype calls to friends or family. At other times, after days, and sometimes weeks of confinement, the walls would close in, silence swallowing me, my mind protesting the peace, longing for someone, anyone, to brighten the place with their friendship, stories, or news.

Anyone, that is, but the not-so welcome ones: Doctors, nurses, carers, healthcare assistants, delivery drivers carrying in parcels or shopping. I’d often feel torn between a varying measure of gratitude for the work the did but resentful of my need for their presence, my mind, and/ or my body screaming for quietness and rest. Oh I’d try, I’d really try.  By my nature, I really want to like people, and I want them to like me. Did I learn some heart lessons? Absolutely. Did I let as much wash over me as I should? No way. The latter, I’m still learning, but I learnt so much about people management, over the four (or perhaps more) years I needed increasing levels of support.

I met so many people this way, whether I wanted to or not. Oftentimes, I made firm friends with people, at least for the time I needed them, popping in and out of my life, A sizeable majority would start off great, but eventually get too comy and familiar, nearly forgetting their professional role. Until they’d leave their place of work, for somewhere new and I’d start again, Over, and over, and over, and over, and over again.

To be hospitable, welcoming, is a skill I lacked in at first, but I practiced over and over again, not just with the not-so-welcome ones. For all the ones I resisted, responded, reacted to, there were friends aplenty… each a gift from God. On the squishy sofa sat so many bottoms, others reclined, lounged, relaxed, often with a beverage to hand, and a snack or three. My safe haven became theirs. A place of prayer, bringing their needs, others needs, and my own before our Heavenly Father. These are precious memories.

Rarer times still, I played host, an unfamiliar role at best. Obsessing over the menu, the shopping, the cooking… disorganised chaos ensued… but I never recall ordering takeaway due to inedible food. Occasionally the food would be very late, a ‘simple’ menu anything but. Daring something to go wrong, but willing everything to be unreasonably perfect. Name after name of people with which I once shared my life but now lost touch, life having taken over. Minutes and hours of time spent with people eating, talking, laughing, sharing, my favourite ways to spend my time, to value, appreciate, love people. The very aims of good hospitality… It really is priceless and value-full. Time I’ll never get back that could not have been better spent.


via Daily Prompt: Hospitality

More than just a garden (2)

Unbelievably, it’s 9 months since a Garden Party was held to mark the official opening of the new front garden in the grounds of the big old house I, and my housemates call ‘home’.  A monumental effort between local businesses, hundreds of volunteers, Beechwood Residents, and staff, it’s continued to be tended by all the […]

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The annual catch-up…

Last week the clocks went forward an hour allowing for lighter days.  Spring has also begun to well, ‘spring up’ after an unseasonably mild winter.  It was with great excitement that this was also the week, my new quad sticks finally arrived from Florida. However, the most important event for me last weekend was the arrival of my dear Gran. (My last post featuring Gran was after her last big birthday, almost a year ago.)

I see Gran roughly once a year. This time my uncle and aunt drove south with Gran, to Manchester. A journey of almost 4 hours, without stops. I was so ‘chuffed’ (read: overjoyed) to see her. Unfortunately, I had to wait until the afternoon of Saturday to see them, despite knowing my Gran had arrived in Manchester the previous night. This was to allow me maximum time to get up and to rest before their visit, the first day of two, an added bonus.

My Aunt explained to me that the extra day was to allow for me having a bad day, or even a ‘bed day’ where I would need to curtail their visit to preserve energy for the following day. Plus… I got to spend more time with Gran. Their thoughtfulness delighted me, but didn’t surprise me, knowing how thoughtful my Gran is, especially.

We were having a laugh and a joke about how my Auntie is always in ‘physio mode’, checking I was managing with my new sticks, even though she was hundreds of miles from work! I was putting in a supreme effort that day, as I was desperate to walk well for Gran. I’m thankful to God that he kept me well, and smiley to enjoy those two days, enough that my ‘spark’ was back.

My limited energy was also boosted by masses of excitement over the visit(s), ensuring adrenaline booted my flagging energy. ‘Pacing’ (when activities are broken up into parts according to available energy) is always important. My relatives did this for me, checking at every half/hour that I was okay with them staying longer, and meant I could simply enjoy the visit.  Gran did too!

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Above pic shows Me (right) with Gran, after our ‘Afternoon Tea’

My Gran, Uncle and Aunt all got safely back up to Scotland on the Monday too. I felt pretty rough the beginning of this week! It did take me a few days to recover, but sometimes, the rewards far out weigh the costs! 

Until Till next time…

word cloud started with "accessibility"

The Pain about Pain

Pain.

We all feel it, be it a physical pain in our shoulders, arms, legs, ankles, all of these, or in muscles, or joints… We might try everything to get rid of it; from a warm bath, rest, sleep. medications, be they over the counter or prescription ones, but sometimes nothing helps. Even if we take things to block the feelings of pain it may still persist… over days, weeks, perhaps months, or even years in some cases.There is of course emotional and physcological pain too. I’ve taken anti-depressants for years now.

Unfortunately, it is this latter category in which I find myself for the past 3 years or longer, having endured chronic lower back pain since my teens. It all started with a back problem   stemming from how heavy my schoolbag was. Said bag was once weighed by the    head of support for students with extra learning needs or a disability. I think it weighed about 3 stone… At the time, being relatively slim it would have been about a third of my body weight.

Never did I imagine that some sixteen years later that same pain would persist. I was always susceptible to musculoskeletal pain anyway due to my cerebral palsy (CP). Cerebral Palsy is the medical term for a number of disorders and means ‘brain paralysis’, affecting each person very differently. I’d always just assumed that because my walking was wonky, I might end up with damage to my body, especially since my diagnosis was that CP affect both legs from my hips to the tips of my feet. A physio said the pain is likely down to doing everyday things differently just to get by, and it was bound to tell on my body. (MRI Scans last year failed to pinpoint specific causes). I digress, back to the story… 

Determined to achieve as much as possible despite my CP, (and many more problems besides) since school I’ve achieved two Arts degrees, one a Bachelor, the other a Masters, and passed a couple of further education exams in Counselling Skills, as well as doing a couple of guest lectures in what it was like to grow up being labelled as ‘Special Needs’, despite unexpectedly progressing through high school to University and beyond. 

Drawing blanks

I have no idea when pain first began to push its way through into more than a niggle on a daily basis. Perhaps at University, when I first needed a mobility scooter, or when trips to the bathroom become ever more frequent and increasingly painful.

8 years ago, I began to require more physiotherapy, and eventually a three-wheeled walking frame. This took some getting used to, having been able to walk relatively unaided since the age of six, except perhaps for the borrowing of an arm or two. Despite the strangeness at first, and the increasing challenges I faced each day, I carried on managing with my walking frame and the occasional use of a manual self-propelling wheelchair until roughly age 28.
One day, I wheeled myself into a consultant’s room for what I assumed was a routine appointment and left in turmoil. Due to pain of increasing severity becoming the norm on at least a daily basis, walking was apparently no longer an option. Months of assessments followed until one day, my shiny new electric wheelchair arrived. It was now the beginning of a more painless future. Or so I’d hoped. Several medication changes have made a bit of a difference to one type of pain, and then another have been necessary to try to block a newer kind of pain.
Warm-water based exercises weekly used to stretch, strengthen and condition my aged body, but  I’ve since moved to an area where Hydrotherapy is not available. I did start on new pain patches which helps, but I always have some pain. 

Female model shown in 9 images with a read blotch indicating a different site of pain


There is little doubt my pain is chronic. Chronic pain is continuous, long-term pain of more than 12 weeks or after the time that healing would have been thought to have occurred in pain after trauma or surgery.

British Pain Society, 2015 http://britishpsinsociety.org

Different sites Inc. the one above estimate between 10-14 million people in UK live with chronic pain. Ouch! 

This is the pain about pain. 
To collapse into bed at the end of one painful day only to struggle to find a comfortable sleeping position for any length of time, and the pain to continue all night long and be with me into the new day too. The pain about pain is its sheer persistence. It doesn’t care who falls victim to it, or what one’s plans are, or what problems it exacerbates. 

The day one or all meds stop working is a day I pray will never come, though I know it’s possible. I’ve begun physiotherapy again, with the aim initially of becoming stronger and fitter for an upcoming major surgery, “elective” for the first time in my life. Really I have no choice about it,  just planned, as opposed to being a emergency. 

I’m aware many are in a worse situation than me, have no access to clean water, food or shelter, never mind pain relieving medication,  antibiotics or appliances such as stoma bags.

Equally, there are many who never need to give pain a thought save perhaps the occasional headache. For those who battle pain day in, day out I feel solidarity with, but wonder how we continue to fight each day. 

Emotional and psychological problems add to the burden

At least 1 in 4 in the UK battle psychological and emotional pain in the form of one or more mental illness. While I don’t have a mental illness as such, I do have Reactive Depression, a result of living in so much pain for so long, not to mention the emotional and psychological chaos that comes with constantly managing all that comes with it. 

Stay tuned for the next in my series of posts on pain, on depression and loss.

Taking inventory: From the outside looking in

Winding the clock back to the end of December last year, when the New Year was so shiny and new it had yet to begin, I had a conversation with my therapist where I had a definite “light-bulb moment”. In need of motivation for the year ahead, I decided to write a list of up coming events and extras (mostly outings)  which would give me something concrete to look forward to, brightening my semi-life..

During the year, I’d attended several weeks of a pain-management program. We were taught how to set manageable goals, by making them S.M.A.R.T.:

  • Specific
  • Measurable
  • Attainable
  • Realistic
  • Time-bound

My “Looking Forward” list was an extension of this technique. I followed one last piece of advice from the psychologists, which was to make goals public to give help to be able to stick to them, injecting intentionality into the project.. That’s why I published it as a blog post. Friends and family heard of, or read of, my plans with enthusiasm, and encouraged me to do my utmost to accomplish as much as possible.

The original list from 27/10/15 was as follows:

“In 2016 I’m looking forward to….

  1. Becoming an Auntie for the first time
  2. A close relative’s big birthday
  3. Going to see Boyce Avenue (a band who first found fame on YouTube coverong
  4. Going to indie food fest
  5. Going to a theatre show (yet to decide on what, where and when)
  6. Going to the seaside I miss the sea
  7. Visiting Susan with Debs and a sidekick
  8. Listening to Daily Audio Bible Every Day
  9. Keeping a gratitude journal (find a regular time to do this every day. Maybe 6pm?)
  10. Keeping up with Pain Management Programme activities:
  • Review goals on a bi-weekly basis
  • Every Thursday at 11.30am read through PMP course material
  • Practice mindfulness at these times minimum
  • Review Activity Level – is it at as steady a level as possible day by day?
  1. Reading a book a month on a completely new topic I know nothing about.
  2. Going to a different church from mine every 6 months
  3. Streamlining my spending (not sure yet what this looks like
  4. Sending a small but appropriate gift and/or card to a friend going through a hard time, Aim to do this a few times this year.
the days that changed my life
month-per-view calendar

Six months on, my life is unrecognizable, partly from the move to a new area, no longer living independently and receiving 24/7 care. Some items on the list have had to be abandoned, (was unable to use passes for indie food fest,)as it is harder now to find carers to accompany me on outings, since the home can be short-staffed at times, and everyone is needed here. The home do their absolute best to allow some of the requests where at all possible. Going out is now mega-tough.

It wasn’t all good!

Items 8 and 9 required habit-forming to really impact my life, and sadly this just did not happen. At the end of last year and beginning of this one I had a period of illness where I was unable to leave my bed at all, due to a nasty bout of cellulitis in my good foot, which lasted 5-6 long weeks. The antibiotics alsocaused havoc in my body, lowering my immune system, and ensuring another infection soon followed. Once all of this had healed, I became more fatigued than I have been for years, losing the energy I had built up with extreme care over a number of weeks while attending the Pain Management Programme and building activity levels. I’d been feeling better, and that was all gone. Upset, my mood sank lower, and my comping mechanisms became more and more erratic. A care-planning meeting added to the upset at the time, as it seemed nothing was achieved at all that was much practical good. However, those who needed to realise just how hard things had got for me began to see just what I was facing, the first of several answered prayers in the first 3 months of the year. Some weeks later, I was given respite, and following that, funding to make it a permanent move. The swiftness of the answer meant that no one was prepared for it, and 10 minutes before leaving for the Boyce Avenue gig, I finally heard the answer I’d been seeking. Almost 3 months on, I’ve now settled in the home.

First Gig in Years and a meet n’ greet!

Fortunately, some items on the list were completed before the move, and some I’ve documented in this blog. I became an Auntie to baby Euan on 11th February this year. I made it to my Gran’s 80th Birthday meal at the end of May, and loved it despite all the effort. Going to the Boyce Avenue gig in mid-March was a guaragutan effort too. Organising a side-kick, taxis to and from the O2 Academy, and the all important tickets of course. To ensure I’d no problems with my ostomy while out, I just didn’t eat an evening meal, and drank as little as I could. I’d guessed, correctly as it turned out, that getting to the disabled toilet would be a palaver, and this was the only way to avoid those stresses. My strategy worked until I got home, which was a relief. I didn’t want to miss any of the gig and was fortunate enough to briefly meet handsome Calum Scott, from Britain’s Got Talent (2015), the support act to the UK-leg of Boyce Avenue’s tour. If you are wondering who the heck they are, check out the You-Tube links to their music.

Despite all the upheaval in my life, I’ve managed to continue thinking about what I learned from the Pain Management Programme, and attend two further sessions, but missing two due to illness. I’ve pulled out of the programme now due to the difficulty of travelling two or from Leeds, and of finding a side-kick. However, at an appointment this week, I’ve been given a reading list, and will be sent programme material in the post at the times the group meet with each other. Very happy with those arrangements, to allow me to continue learning and accomplishing my goals. One, was to gradually begin writing and publishing blog posts again, another to continue with gentle exercises and stretches I was given while attending the course, and the other goal to go out with visitors rather than staying in. Due to my change in circumstances, the third goal is not so achievable. I know I am doing as much as I possibly can and am learning to be content with that.

I’ve surprised myself with how much I HAVE done, and I’ve gained new memories, made new friends, re-acquainted with old ones, and built on aspects of myself I knew needed more work. I have more confidence from pushing myself despite often feeling lousy. Doing more has pushed me to want to do more, despite reduced energy levels these days. The days in-between activity days have become recovery days rather than rest days. Having a ‘rest’ just is not enough. I’ve needed more and more sleep after outings, and even in the days before hand. I now read veraciously, and more widely than before, from Women’s fiction, poetry, books on how to write poetry, fiction or memoir, a book of Spurgeons sermons on prayer, which I’ve not long begun, and many more, even some YA books. I colour in, am back listening to music, and nudging my friends if it’s been a little long between contact.

I’ve yet to go to the theatre, but have recently been to the cinema, and have plans to go again to see the much talked about movie version of ‘Ab Fab’. Hopefully I’ll get to see the seaside over the summer, possibly visit my friend Susan who doesn’t live all that far away.  Of course, I have yet to have the operation I’ve been waiting for.I’m looking forwsrd to getting rid of my heavy hernia! I am sure there are other things I can add to the list. If you have any suggestion, feel free to post a comment below.

What’s so hard about going out?

‘Worry Wart’

I’ve found this post so difficult to start. I have tried several times in the last day or two, but not managed to concentrate long enough.  The words have jarred so in my head, that I’ve ended up deleting them and going outside for fresh air. Still, my mind refuses to quit jumping from topic to topic, thought to thought. I’ve cut, copied and pasted so many times trying to make the words fit despite the chaos in my head!

I’ve always been a worrier since I was very small. Outings have always been hard since a young age because of the need to be near a toilet. Growing up, I still went camping with The Brownies, and The Girl Guides, even though the latter meant sleeping in tents… and dashing to toilets. I’ve been on numerous picnics with my family or while on a Scripture Union holiday. I always worried about accidents, and developed something of a fear of public loos.

There were other worries too. Since I was very small, I become easily disorientated, sometimes even in familiar places, getting lost as easily as a young child might do, and have been known to panic in crowds. Having the spatial awareness of a 10 yr old is the reason why I’m not allowed to drive, but somehow, still allowed to be in charge of an electric wheelchair!  I don’t know how I managed to move away to university twice, given these sorts of problems, but now many years have passed since my move to the wrong side of the Scotland/England border, I’m very glad my parents gently encouraged me to accomplish as much as possible. I was no different from my brother in this respect, having both left home at a similar age. However even if going out while at uni or when I lived in my flat was as ‘simple’ as going out for a meal with friends, out to a friends house or out shopping with friends, I’d be so anxious beforehand so as not to sleep much the night before.

Argh….!argh

As time has gone on, and my health issues have become more complex, going out have become much more of a thought, and required more planning than ever. Even weeks or days before an outing, I’ll worry whether I’ll be well enough to go at all, and how much going out will take out of me, or if it will cause a pain spike. Remembering to take spare ostomy kit and spare clothes, medication, my phone in case I got lost, always having a drink with me because of greater risk of dehydration, and so on alleviates some of the worry. However, I’ve even had panic attacks and lots of trouble with anxiety, especially in the last few months, before I made the decision to move. I’ve had mindfulness training and other help with my mental health due to the toll my physical health has had on my mind. I find it useful as a practical skill to calm down if i’m in a state of heightened anxiety. Of course, I still pray at times of worry and panic too, as mindfulness is no replacement for prayer, and nor is it intended to be.

‘Somebody stop me’!

Tomorrow, I’m due to meet up with a faithful friend I haven’t seen in 2 and a half years. I should be excited about seeing her and catching up on all her news. All I can think about is if I will feel well enough to enjoy being out, if my friend will be shocked at the differences in me, and how I will manage to stay calm while navigating an area unfamiliar to me. There is of course, the usual worry over toilets! I will be with a carer as I am unable to do this kind of thing on my own. Much to the staff’s confusion, as they said they didn’t want to feel like a spare wheel in a private conversation. Fair enough… The worries around going out have become enough for me not to be concerned about this, as it is far more important to be accompanied and hopefully relax enough to forget everything for a little while, other than enjoying seeing my friend..

Making such an effort to go out means I’ll have to schedule in ‘recovery time’ afterwards, chronicillnessmeme2to try to recoup some of the extra energy used. Going from day to day can mean I need a least one recovery day in bed, so adding extras to my week isn’t easy. It’s very necessary for me though. It’s a big part of feeling as though I’m living, and not simply existing. Being with friends or family energises me, and I love being around people as much as ever. Despite all the effort, I’ll continue to push myself to go to new places and keep seeing my friends occasionally, rather than them always having to come and see me. A carer commented today that I seem to have lots of friends. I think it’s in part because I’ve learned the hard way that you have to be a good friend to others to make good friends. I wouldn’t have it any other way… and I get to nap after!

Over to you….

 

  • Áre you a worrier? I’m interested to hear how you manage those worries, whether it be through keeping a journal, hitting the gym or something else.
  • If you also have an illness (physical or mental) or a disability, do you find it difficult to meet up with people or to go out? What are some of the ways you cope with going out, or coping with not being able to go out?