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’.

From a modern flat to a big, old home….

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A recent photo of me with my nephew, taken in my new room in Nursing Care facility where I now live. 

From ‘independence’ to full-time Nursing Care

In the last little while, I’ve moved into residential care. Not a decision I took lightly but living independently was seriously endangering my mental health. Respite was arranged in a hurry as I desperately needed a rest. A few days after my arrival, I was a different person. I’d had more sleep then I’d had in a very long time, in part due to sleeping on a specialist mattress to try to ease some of my pain. I’d had proper meals, and help with the projectile stoma output which had been giving me so much grief at all hours of the day and night. I very quickly made friends, and there are as many activities available as possible given that the home is maintained by a national charity, and as such, relies heavily on volunteers. I did play more than one game of scrabble that first week, which I loved.

At the end of the week, I hadn’t heard if there were any changes to my care plan at home and I knew I couldn’t go back for any length of time and not get in the same mess. I knew deep down there was no money for any more care at home. Long story short, I’m now in residential care full time. I’m much happier, certainly safer and healthier than I was living on my own, latterly.

Disconnect in Well-Connected Times

Of course, as with any move, there will always be teething problems. These have become apparent very quickly. The manager is trying hard to get something done about the sweltering heat, and the problems with water. The care I have is generally absolutely brilliant, especially now people have had time to get used to the idiosyncrasy of doing stoma care on my behalf. I may have startlingly high levels of pain and fatigue, and the medication needed to manage these has it’s own side effects. Staff have begun to recognise the signs, and remind me to rest often. I am slowly developing my own routine in amongst my varying levels of health. I love visitors and thrive on being around people.

There’s just a weeny problem. The house is old, and has been extended. The house has been blamed for the non-existent Wi-Fi in upstairs rooms but that was only part of the problem. Finally, a solution has been suggested and will hopefully be implemented fairly swiftly. It needs to be. After all, personal care and support is paramount, but access to social support, which arguably includes Wi-Fi is nearly as important. I look forward to the day when I can skype when I chose to, including family as well as my therapist. I am almost wholly dependent on social media for keeping in touch with my wonderful friends, who I really miss, as well as church family and blood family. I also rely on Wi-Fi to conduct research for blog posts, and find other sits to write for. Being a girly girl, I make occasional purchases too.

My life has diminished enough without losing touch with people or losing the blog altogether. These are crucial contacts for my own sanity, some of whom offer online support with my chronic illness and disability. Why should any of this have to suffer simply because my circumstances have dramatically changed? It’s time residential care caught up with the times!

Over to You:

Do you think WiFi access is important in today’s world? Why, or why not?

Do you live in supported living, residential care or a nursing home, is Wi-Fi access considered a priority? Should it be?

Do you have any other comments to make. Perhaps you disagree with me. I’d love to hear from you!

An update on the problems, and the possibilities!

New Week, Old Problems

Morning everyone! In my last post, I mentioned some of the negatives that have been plaguing me recently, and some of the positives which counteract these. Specifically, the unreliability of both my health and my wheelchair continue to be constants which interrupt the life I would love to live. Last week, I took delivery of a small electric wheelchair, reconditioned and fitted to me. At first, all was well. Though not nearly as supportive as my aching body needs, it was at least working, and getting me round my flat, to the doctors surgery or church, and even a trip to my nearest city to meet up with  a close friend and her small boy. The peace, and freedom, has been all too short. Noisy wheels are back. I was assured that it was probably just the plastic from the wheelchair and the rubber tyres colliding in squeaks, but to contact those with a responsibility to fix it should it get worse. That’s what I will have to do later this morning, at the risk of sounding like a moaning minnie, as the wheels don’t actually feel very safe, besides being noisy. They are, at least still working for now, which is more than can be said for my previous chair. It has now been collected, thankfully, so there is one less set of wheels to negotiate round when I want to get from one room to another. Even this is an improvement on recent weeks, so it;s not all bad! Hoping the problems have a simpler solution, with it being a simpler wheelchair!

Accomplishments (at last!)

My health has continued to interrupt my writing because I have continued to need to hone my sleeping skills! I am however having more ideas for posts to write and being able to do a little more without falling asleep, so though it is slow, there is definitely progress! I’ve managed to complete a few small projects, including the first chapter of a memoir and the query letter, which I emailed off within the right side of the deadline with a few hours to spare (go me!) The hard work paid off when a friend I asked for feedback really liked it, despite a few errors. Thanks, Caroline for your input. If further chapters ever see the light of day, I’ll definitely be sending them your way! I read it to a carer as well while she cleaned, who also really liked it, even though they have completely opposite background and personality to me… I mention these things, because I see it as a really good sign that the same material has been received positively by completely different people. Just awaiting the feedback now, but there is a long wait of just under two months, so I’m trying to forget about it!

I needed quite a few days to recover from writing the chapter, including a few more than expected. I have no idea what is continuing to exhaust me, and don’t know where to start trying to find out. Despite this, I have managed to lead a meeting of a women’s group I am part of, where I talked about the last few months, and the ways I attempt to maintain joy and a prayer life, with a lot of enabling from my Heavenly Father. Just getting the talk written was last minute battle, as I couldn’t stop falling asleep in front of the laptop! However, I succeeded in the end, thanks to the faithful prayers of some close friends as well, a couple of whom were also at the meeting. It’s always encouraging for me to be able to use the things I have been through to encourage others, and explore ways we can find joy in our pain and reach others in the midst of it. I will post my talk soon once I have edited it. It’s still full of the typos I didn’t have time to edit before it was time for the group, but should be next Monday’s post!

I’ve continued to host WOWChurch services on a Sunday too. I think I’ve done three now, and despite posting the wrong link to the teaching slot, my confidence is growing. I chose to look at joy the first week, as it also tied in with trying to prepare for giving my testimony, Spiritual Gifts (on which a post is forthcoming!) and last night’s topic, prayer. In thinking about prayer, we also used what we learned to pray for Christians still in parts of Iraq, and the larger contingent forced to flee. I have seen some news articles focussing on the particular troubles for Iraqi Christians, but not many. If you would like to know more, see this recent feature from The Daily Telegraph. If you do the praying thing, please do pray for Christians in Iraq at this time. If you would like to know more about WOWChurch, you can find contact details for Dave Roberts, as well as short podcasts at www.davegroberts.podbean.com

What else does this week hold?

This week I have a meeting to try and reinstate funding for warm-water based physiotherapy, commonly known as hydrotherapy. I am SO looking forward to that beginning again, albeit with help from a different agency than the ones who accompanied me before. This week sees an ending too. I hope I’ll have my final appointment for anti-coagulant therapy to fix a blood clot I got in my leg in hospital from inactivity due to the seriousness of my surgery, It will be great to be free of such a major tablet, and have one less batch of appointments to think about. I am hoping though, that my transport is more successful than last time! A transport-related post should appear (as if by magic!) on Wednesday. I had thought I knew what I was posting on Friday, but I have forgotten what that is, so hoping I remember soon! I have a fairly boring but productive week ahead. This means unless I need to sleep it all off (which is likely) I should have more time to write! (Hurray!!)

In recent weeks, I….

Hi everyone, here I go with my latest attempt to kickstart my blog after some months of absence. Finally, finally, I feel ready to start writing regularl
y again. Hopefully, I’ll manage to post three times a week. For now, lets revisit the last few weeks in my world! In the past few weeks, I:

Have been concentrating on all the basics.

For me, this has meant more than just getting to the end of each day in one piece. Just getting from one hour to the next has often been a challenge, either because of a much disrupted sleep the previous night from insomnia, pain, (be it joint, stomach, or back) or due to my my highly functioning stoma, meaning I am up to empty it several times a night, despite using an appliance with one of the largest available.

If I settle down for a nap the following morning after a bad night, one hour, even two is never enough. And yet, keeping going is not an option either, as I am extra uncoordinated, clumsier, and even less able to think straight than usual. The problem is, after such a long nap, I have no inclination to write.
Additionally, i’ve had never-ending lists of admin, be it phone calls, emails to write, forms to fill… Unfortunately, these things have not been the only difficulties.

Have been confined to one room, for the most part.

After all that busyness, I am exhausted. This has been exacerbated, at least for the last six weeks, because of the unreliability of my electric wheelchair, meaning that even sitting still is hard work, as I need the support which I have from the pressure cushions on my chair, to enable me to sit up comfortably with less effort, less pain, improved balance and posture, and without putting undue stress on my back, which is already incredibly sore most days. Even when my wheelchair has been returned after being away for repair, I’ve been lucky to get the use of it for a full 24 hours without it stalling. As it is, it has stopped altogether, and is awaiting collection for the the fourth time in six weeks. How do I manage without such vital machinery? The truth is, I don’t! For the vast majority of this time, I’ve been confined to one room, usually my bedroom, as I have a profiling bed. This means I can press some buttons to adjust the mattress (in this case, a high-pressure one) to more effectively support my posture, and change my position when I am uncomfortable or in pain, without actually having to move my body. I am incredibly grateful to have access to such equipment, as without this I would be in constant unrelenting agony.
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Fortunately for me, I have occasionally been able to leave the house in my (ill-fitting, too small and unsupportive) manual wheelchair if a carer, family member or friend has time to help me. This has mainly been for hospital appointments or the food shop. I’ve been unable to attend church in this time, as spending long periods of time in this manual wheelchair has done, and would do much more harm than good. While I am awaiting a permanent fix or replacement for my electric wheelchair, the confinement continues.

Have begun a tailor-made eating plan!

What am I doing with my time now I’m even more restricted than usual? In part, I’ve used the
time to plan food shopping, cooking and eating meticulously. In partnership with my dietician, I am eating much more lean protein to help fill me up without added bulk (or calories) in smaller, more regular meals and snacks. Due to my unique circumstances we’ve had to devise inventive ways of including all necessary vitamins and minerals in my diet, without me having to prepare, cook, eat and attempt to digest lots of fruit and vegetables, for me to struggle to absorb the nutrition anyway due to the shortness of the piece of gut I have left, and reduce the risk of blockages in the stoma, or over-filling of my ostomy bag. What a challenge! (Apologies if you were eating while reading this!) With help from care staff, also I’ve been using a reasonably comprehensive soluble vitamin and mineral tablet on a daily basis, to boost anything I am managing to absorb. As recently as the last few days, on advice from a GI consultant, I’ve recommenced a fluid restriction in combination with a litre of dioralyte daily (rehydration salts and electrolytes). All of this, though effortful is giving me more energy, helping me lose weight by reducing the temptation to snack or comfort eat, and generally feel better about myself. The results are also evident in regular blood tests. A long hard slog rather than a quick fix, but will all hopefully eventually be worth it.

4. The once gaping wound in my abdomen is no more!

Said wound has finally healed, though it needed loads of TLC and took an arduous five months to heal, some 3 months less than my fantastic surgical team expected. My surgeon himself, had some doubt that the wound would ever heal completely, but at a joint medical/surgical appointment last week, it was lovely to be able to tell in person that it had. The doctor said I made the surgeons day. I’ll bet they were glad to have good news for a change, especially given my prognosis and the miracle that I am here at all. As a Christian, I believe that ultimately God has orchestrated this healing, though other factors have undoubtedly helped including keeping the wound free other than the pre-existing infection on the outside of the wound, keeping it clean, and mostly dry, even while washing my hair, no mean feat in itself!

What else have I missed?

I have spent time doing the things I love again: cooking, baking, reading everything from ebooks on my kindle app on my smartphone, blog posts, news articles, catching up with friends family over occasional coffee or meals at home, or even more occasional meals or coffees out when accompanied. I’ve participated in church services online through skype and facebook, and even led my first one last Sunday. A separate blog post on that is to come. In the meantime, contact Dave Roberts to find out how to get involved in VOWchurch if you would live to, or even if you would just like to find out more.
Also on Facebook, I’ve joined a campaign called “Get Your Belly Out”, begun by four amazing yet ordinary girls seeking to raise awareness of Inflammatory Bowel Disease (IBD), raising money for a cure, and building up a loyal, friendly, support community in the process.
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Lastly, I’ve participated in a webinar (a seminar on the web) or how to write memoir, tips and tricks to use, and what to avoid! This was organised by Writer’s Digest, and run by an agent in America on a weekday lunchtime, broadcast all around the world to aspiring writers in various time zones, 6 pm in the evening, in my case! I managed to stay awake (hurrah!) content rating for virtually the full 90 minute seminar, having learned lotads. I’m now working on the 1500 words to email to the agent, due in a mere 9 days (eeek). On that note, I must scarper!

fifteen on Friday: people who make ‘snap’ decisions

Fifteen on Friday is a space where I write about something related to my experience of disability and illness. It stems from ‘five-minute Friday when I followed prompts set by the originator of the site, and I do this with her blessing. It takes me fifteen minutes often, to type what others would type in five, usually just because I get so tired!

They don’t know me like I do…

This week, it’s a subject that really riles me, and so I will do my best not to rant. I should acknowledge as well, that I do this too, though I shouldn’t, given how annoyed I get when people do it to me. So what is it that so annoys me? I can’t stand people making ‘snap’ decisions based on a snippet of information, or on how I look, specifically snap decisions on the severity or lack thereof, of my disability, or that I ‘look’ healthy, so I am healthy, which just drives me mad. Someone else said recently that ‘I hide being ill very well!’ I think so too!

It would be a lot easier to say, ‘I know the truth, and it doesn’t matter what anyone else thinks’, but I’ve always cared. My friend known as ‘Chronic Rants’ blogged how it bugs her people always have to see the negatives in new treatments she tries, or tell her horror stories of how it went wrong for their friend’s friend, their mother, or who ever. Again, people making snap judgements based on a little information. Chronic Rants admits she does it, far too often. I do too. It still smarts when I am on the receiving end.

But you don’t look disabled!

If I am sat in a chair, or laid in a bed, I don’t ‘look’ disabled (nor would I want to). The irony is, neglect to take my cocktail of tablets and I look very disabled indeed, flailing about with arms and legs, shaking when I hold anything, doubled over in pain (which I often am even with the tablets). People see me looking ‘normal’ therefore and think ‘her disability is not that bad’ and voice it. I’ve even had a consultant pummel my arm years ago trying to find a vein, with me almost in tears ‘what’s wrong?’ he says.

‘My arm hurts a lot, cos I have cerebral palsy’

He says, incredulously, ‘You have cerebral palsy? Nobody told me (no surprise there!) But you don’t look like you have cerebral palsy’.

He’s not the only one. Nurses have made me walk because I don’t look disabled enough to need a hospital wheelchair, so I’d only have to walk the wee bit to the taxi) and others have asked ‘But how do you manage at home?’ Erm… that’s the point (of asking for help) I don’t. I have invisible disabilities, but I also have a physical disability that looks invisible in certain situations… weird!

However, they don’t see the exhaustion after a few steps, the physio does, or the pain shooting down my legs from trying to stay upright with a Zimmer frame after said steps. They don’t see all the things I can’t do that I have to ask ‘sidekicks’ to do, while wishing I didn’t have to ask so often. They don’t see me doubled over in pain, the professionals in and out of my flat, be they joint care manager, agency manager, nurses, ‘sidekicks’, other nurses for appointments, and house visits from doctors when I can’t even make it down a street or two to the surgery.

Yes, I know, I should put the violins away now!! I am thankful that I can talk (though others may not be when I just don’t shhhh!!), I have an electric wheelchair to get about (though it doesn’t fit in taxis — another story!) and I can move my arms and legs enough to do some things (eat, drink, choose lighter weight products in the supermarket, drive my wheelchair (badly…!) and so on.

It’s something I have to live with, but that will continue to bug me! I guess we all have pet hates like that!

The one with the Hospital…

I do so hate all these absences from my writing. This time, it’s because I was in hospital. I am still in hospital, actually, just writing this from my room as my lovely Mum got mobile Internet sorted out. I am likely to be in for another 2 weeks at least so it is safe to say you can expect more blog posts. I do however, have to catch up with promises I made to write guest posts, and write the reflection on the Holy Spirit a minister asked for. At times if feels overwhelming, though not as much as when I was in my flat feeling shattered and wondering over it all.

It is easier to cope with things in hospital in some ways, because my parents are the ones watching my post and helping with paperwork and so on. My friends come and offer a very welcome distraction from the (sometimes) mind-numbing boredom. All I have to do is concentrate on two things; my relationship with Jesus, and getting better. Thankfully, I am getting better, though I did have entirely separate week-long stints in the High Dependency Unit after the first emergency operation and Intensive Care Unit after the second. Doctors are amazed I have come this far given what I have been through, but my Gran’s friend was right when she said God obviously still has a purpose for my life and work for me to do. After all, despite what society thinks, it is God who gives life, and God who takes it away.

I have had excellent care during this hospital stay, though it hasn’t always been easy. There have been times I have had to shout loudly to get the help I need with basic tasks such as washing and dressing, or cutting up food. People kept asking “and how do you manage at home?” Over and over, I’d say, I don’t, I have carers in three or four times a day. It reinforced negative feelings of not being good enough because I could not look after myself, which prompted me to speak up. This time I knew I had to ask for help to make my needs known. Once that happened I felt more comfortable around the ward. I did however raise the issues with an appropriate person. A bit unusual for me. I didn’t want others with multiple impairments to straggle as I had. One dept. generally focuses on their own issue to the exclusion of all else, which usually works fine, except in complex cases like mine.

 I’m on a ward again but in a side room, where nurses wear yellow aprons and purple gloves so no infection is passed from them to me or from me to them. Anyone with a cold or a bug has so far been sensible enough to stay away or keep their distance. As a friend said, anyone who visited me while ill, would likely leave me suffering with whatever they had, (as my immune system is so low) while being stuck within four walls (as I must not leave my room and mix with other patients, (again for infection risk) which would me absolutely miserable, on top of everything else – yuck!!

When I do get home, it may not be straightforward, as a different care agency will be assisting me. It was about time I moved… with everything that went on before. For now though I have to eat properly so the wound has enough calories to help it heal. (I have no skin on my tummy, because it’s just an open wound. However, the surgeon and his team have saved my life so I can’t grumble. It will heal in time. I’m off for a nap before the lovely domestic team are round with breakfast in an hour. 

Care, employment and families – big week for disability

Trust the Government to squish debates on such big issues into the last week in the hopes not as many MP’s will attend / notice / care. As usual, as mentioned by Scope, the numbers of people now not qualifying for care, and therefore having little or no help to prevent a health or care crisis such as a hospitalisation, means the cost to taxpayer escalates despite attempts to save money. Typical Government too, to underestimate how much money good, ‘preventative’ social care costs.

Also, it has not been mentioned here that cuts to disability living allowance -500,000 less people are eligible or will lose out when assessed for it’s replacement. This matters, because the people not eligible for social care might have had the funds to pay for something, at least, but will now have no plan B, surely increasing demand on all fronts. Also, people eligible for social care could previously use their Disability Living Allowance to ‘top-up’ their care, though for many, once assessed for PIP, their benefit amount will be less, if eligible at all, and therefore a further gap in funding exists. The only funding which ‘tops up’ the gap a little is that after several attempts, the Government were unable to close the Independent Living Fund, used to pay for care for those people judged most severely disabled, after the decision was quashed by a last-ditch appeal attempt. However, as this money goes to a relatively small number of people, there is still a massive shortfall. Yet again, the Government has failed to understand how difficult, and complex life can be when you are sick and/or disabled, and just to be seen on a par with your peers requires significant mental and physical energy, and considerable extra costs (phoning ahead, transport, planning for toilet stops, meals, medication… heck, just getting up and dressed even with help, can be beyond me some days!! Those who are able to be on a par with ‘normal people’ in the workplace, in home-life, and comminity life can, and should be given this support — yes, perhaps at quite a big cost. However, to not plough money into it will cost something greater — physical and mental health of sick and/or disabled people will deteriorate costs health and social care systems more in the longterm, and especially where there is also increased pressure and stress from wrong benefit / tribunal decisions too, lives.

Scope's Blog

It may be the last week before Christmas, but politicians are making time between mince pies and mulled wine to look at a couple of important disability issues.

Today MPs have their first opportunity to debate the Government’s plans for reforming local care – including capping care costs for elderly and an end the postcode lottery in care.

Councils say the crisis in social care sits behind big health issues such as pressure on A&E and GPs – if older and disabled people don’t get preventative, community care, they risk becoming isolated and slipping into crisis.

The Care and Support Alliance – representing 75 charities – is today saying that the bill is a real achievement but risks being undermined by a funding black hole which has forced councils to restrict who gets support.

The CSA has published new research from the LSE that reveals that if we had the…

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