Levels of disability. Levels of caring. A question for discussion.

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When a child is assessed for services or indeed in a medical setting, there are a series of questions which determine the level of disability. Some of the areas considered are ability, or lack thereof, to perform any daily care activities such as getting dressed, bathing, or eating. Other areas considered would be motor ability, for example when assessing Cerebral Palsy as there are various types of Cerebral Palsy and varying levels of severity. (ie: can the child sit, walk, roll, or hold an object in their hands.)

Assessments are done for respite, educational services, nursing services and beyond. They assist the care provider in knowing what level of services will meet the requirements of that particular child. As a parent, these questions can bring up a lot of emotions as more and more boxes are ticked noting their child is unable to perform each task. To this day, I dread the assessments because of this, and the repetition of saying “just mark everything as a full assist in all daily living activities.”

But I will say this: Over the years, those questions do get a bit easier to handle. 

This point is where I’m going to bring up being a full time carer. I realise in advance I may upset some carers, but I genuinely hope to not do so!

Just as with the varying degrees of disability, there are varying levels of care work provided. It’s actually obvious, to me anyway, that a fully incapacitated and medically complex child or adult will require more intensive work by a carer than caring for someone with mild disability or indeed without any disabilities at all. This brings me to my point – my question, really:

Should family carers also be assessed (as are their loved ones) on the level of care they provide to determine the supports and possibly even level of remuneration for their work? 

If carers were assessed on the level of care work provided – hours spent caring daily, level of medical knowledge and skills required, level of physical work required, for example – could this lead to more supports for those carers who are providing the more intensive caring work? 

I think most full time carers need more support. I do think, however, that the carers who are working around the clock, literally, caring for the most profoundly disabled, are in the most need of supports…just as their loved one is in need of the most intensive caring because of their level of disability.

Let’s have a discussion on how best to support the carers of loved ones with profound disabilities.

 

 

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Dear consultants, GP and nurses

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I have an invitation – no, more of a challenge – for all of the consultants, GPs and nurses reading this blog piece. I’m doing this because my last blog piece (see here) to the government saw zero responses from anyone in politics. I know, I shouldn’t be surprised. So, I am holding out hope that those of you in the medical professions will come through instead.

Over the past while, I’ve seen countless family carers, such as myself, get behind the nursing strikes and the #CareCantWait campaign supporting consultants and GPs. Carers support all of you because you are the ones who have dedicated your careers to giving expert care to our vulnerable family members, and indeed at times, saving their lives. We could never adequately voice our gratitude for the work you all do. 

Having said that, we don’t want to see you unless we absolutely have to – and I say that with a dash of humour but fully in truth. 

We support your campaigns for reforms and improvements in your various sectors of the health system, and in the health system overall. We do this because we are the *frequent fliers* in the system. We know it forwards and backwards. We live it every single day, but usually at home. And, we know just how important your work is to our fragile loved ones.

What I ask here is two-fold:

  1. Recognise that we, as family carers, are on the very front line of care. We are the ones who often make the difference between a complex case landing at your door or exam room or ED, or being handled at home. We administer life saving medication, suction airways, provide for orthopaedic care concerns, clean and dress chronic skin wounds, provide emergency seizure care…and so very much more.
  2. Support our fight, which is similar to yours, for reforms and improvements. We don’t have a union or a professional body which advocates for our rights and needs, which are also the needs of those we care for – your patients. We need your collective voice, understanding the vital work we do, to join with ours as we advocate for more supports, improved services at home and in the community. Maybe then the government will take family carers seriously and listen to our concerns.

As I discussed in my last piece linked at the start of this blog piece, if family carers can no longer care, or care as well as they would hope to do and are expected to do, the health system that will end up even more overloaded than it already is now. You will see our vulnerable family members more often. You will see us carers more often, exhausted, physically ill and/or hurting with injury from caring with no supports.

We are all connected in this way – your profession and our work as family carers.

Let’s work on this together. 

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Dear government…signed, a full time carer to an incapacitated loved one.

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The other night, as I sat on my couch in the silence trying to find the words to describe how I felt for a blog, I got a notification of being tagged on Twitter. As timing would have it, the tweet was about being a carer. My reply to that tweet began to address how I feel. I wrote:

I was actually just sitting here trying to find the words to say how burnt out I am. Exhausted. Depressed. Not wanting to do this work anymore. Wanting a life outside of this. Wanting to just be his mother, not his nurse. And feeling guilty at having these feelings.

I’ve been thinking about these feeling since that night. Here are some conclusions:

  • If government (no matter what country) properly supported carers, we wouldn’t get to this exhausted state of wanting to give up.
  • In any other job – and this is indeed work – an employee would NEVER be expected to work and/or be on call around the clock, let alone for days, weeks, months and yes, even years, on end.
  • In any other job – I repeat, this is indeed work – there would be other workers to come in and relieve a fellow worker for breaks, days off, and as needed when ill.
  • By caring for an incapacitated family member at home, the carer saves the government (again, any government, wherever you live) millions if not billions by providing the care services rather than the State.
  • If the carer can no longer provide care for their incapacitated family member, be it through sheer exhaustion or through their own now ill health, it would cost the government far more to provide residential care for that person. In fact, they may be looking at now providing care for TWO people because the carer’s health has broken down to the point of themselves needing care.
  • If governments invested in proper supports for family carers (ie: in-home nursing support, suitable residential respite, timely access to required services & equipment, individualised care plans based on each family’s needs, just to name a few areas of support), they would be investing in the health and well-being of the carer, which is fiscally prudent in the long term (see above listed reasons). An ounce of prevention is worth a pound of cure, as the old saying goes.

We have to ask WHY governments don’t adequately support the family carer working full time to save the life of an incapacitated loved one.

I think it’s because they don’t place an equal value
on the lives of people with disabilities. Full stop. 

Two days ago I received confirmation that the regional respite centre won’t be able to accommodate Brendan Bjorn’s needs (no special articulating bed and no pressure relieving mattress) and that there is no availability for him. I still wait to hear, 11 months since moving to County Wexford, if funding for in-home nursing respite has even been approved. If and when it is ever approved, I would still be unable to leave the home due to the illogical Loco Parentis rule of the HSE unless I had another adult in the home who would be able to handle emergencies that may arise. I don’t have that. So, in-home respite is basically not respite…if it ever happens.

The cold hard truth is that governments count on the love a family carer has for their child, or other incapacitated family member, to keep them in their place (so to speak) caring around the clock, often alone (especially as a lone parent), often in unsafe settings due to lack of proper equipment, often when physically and emotionally depleted. Governments would never allow medical staff to work in such conditions. Unions would never allow it, either. But alas, family carers do not have this protection, and as such, neither do their incapacitated love ones. Carers are expected to continue on with their work fueled solely by their love.

But sometimes love isn’t enough. 

Governments MUST realise that family carers cannot continue on working 24/7 providing nursing level care for years on end without receiving proper supports, time off of their work (again, it is indeed work) and dare we even hope for a life outside of our full time caring role. We will breakdown eventually, be it physically, emotionally, or both…and then what? 

Dear government, listen… 

 

 

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