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The Caregiver’s Challenge

A Realistic Look At The Importance, Impact And Every-Day Life-Saving Duties Of Stroke Victim Caregivers.

 

A note from the author…

I am a neurological physiotherapist, I have watched relatives, spouses and caregivers throughout all of these phases. I have been yelled at, derided and praised. The only thing I can ever offer you as a caregiver/ spouse is advice support; a listening ear and to try my very best to work with you and your loved one(s) to gain the best function possible.

Caregivers are the real heroes of the rehabilitation processes and I have written this blog in an effort to prompt empathy from a health professional perspective and to demonstrate to you guys the caregivers, the real heroes that we do appreciate everything you do.

The impact of a stroke affects the life not only of the individual concerned, but those of friends, family, and loved ones, who often take on the role of caregiver. The responsibilities stemming from this kind of sudden upheaval are emotionally and physically demanding.

Health professionals see all too often when a patient is prepared and released to go home after hospitalisation, that their carer may not be fully prepared. And, in many ways, no amount of preparation can ready carers for what’s to come. The aim is to make the transition from hospital to home care as seamless as possible. But, as is often the case, it doesn’t always go this smoothly(1) …

[N.B. Ideally, stroke side effects should be getting better after discharge from the hospital or clinic. However, sometimes new stroke side effects spring up months after discharge. If you notice anything strange in your loved one, be sure to consult with their doctor or neurologist as soon as possible.]

You want your loved one home but many caregivers are faced with some immediate questions: How do I navigate the health system? Who are these people that will be entering my home to help with care and continue with rehabilitation? And, when everyone leaves how do I cope on my own?

The enduring emotional strain…

Suddenly you are plunged into the tempestuous world of being a carer. Your residence filled to the brim with new, complicated equipment you’ve never used before. Your beloved living room rug is now a falls risk. The corners of the dining table also pose a hazard. Nearly every aspect of your home life is changed, altered to decrease risk prevalence.

[N.B. Stroke patients are at high risk of falling due to common balance problems after stroke. Making home modifications, like installing grab bars and non-slip mats, can improve your loved one’s safety.]

From the caregiver’s perspective, it is sometimes easy to forget that the stroke victim was once independent, someone who you socialised with, went on holiday with, lived with or loved. This person now likely has difficult with some, if not all of the following: walking, talking, swallowing, as well as the execution of some of the most basic of self-care tasks.

To the able-bodied, these actions might seem like inevitable and necessary parts of everyday life. But, imagine, for a moment, that you were no longer capable of completing one, or a few, or all of those actions listed. Very quickly, one’s agency is affected. And a lack of agency and freedom can very quickly affect one’s own mental health, as the inability to act freely and to take care of yourself makes you thoroughly dependant on another.

The ups and downs of caregiving…

Caregivers learn with haste, that the job makes you constant bedfellows with frustration, anxiety and extreme stress on both sides (3). Caregiving is an all-encompassing job, and carers often find little time for themselves or lack the time to address their own problems and pressing emotional issues.

[N.B. Certain stress-centric lifestyle factors can increase the risk of recurrent stroke. Be sure to keep blood pressure, blood cholesterol in check. When in doubt, talk with a doctor.]

Caregivers often face the distinct and quiet suffering of a loss of hope: the hope that one day they will regain some of their own agency and freedom. Unfortunately, many caregivers can get stuck in a cycle of caring for someone else, at the expense of themselves. And, as the cycle goes on, the lives of caregiver and patient become more & more intertwined, making the victories- increasingly, elating, and the defeats, more crushing.

[N.B. Most stroke survivors experience a ‘plateau’ after the first 3 months of recovery. This slowdown, however, is not a sign that recovery is stopping. The brain is capable of changing and healing decades after stroke. So don’t let yourself or your loved one be discouraged by a slowdown of results. Simply use it as a sign to revamp your rehabilitation efforts.]

The most common issues faced by carers….

The psychological and physical impact caring for their loved one with severe disabilities is a sizeable emotional burden. Many carers can experience depression, distress, frustration, anxiety, social isolation, family strain, sleep deprivation, burn out and adrenal fatigue. Carers can also feel a tremendous sense of loss – the loss of a partner or child as well as the loss of their own identity- part of the tremendous sacrifice of caring for another.

One of the major challenges is the sudden and abrupt nature of the injury, allowing no time for emotional, psychological or financial preparation. Uncertainty and the lack of direction for their loved one’s present and future circumstances is a source of significant stress and anxiety.

  • Social isolation
  • Change in roles
  • Getting to know the new person
  • Lack of services and support

Despite being the third highest leading cause of disease in Australia (AIHW study 2015), there is a positive trend worth noting… Between 1980 and 2006, death rates of stroke victims in Australia have fallen by nearly 74% (AIHW graph below). Whilst this is an incredibly encouraging statistic, there is still much work to be done in the fields of treatment, hospitalisation and education.

Sourced. 

 Needs & duties of caregivers (list)

Depending on the severity of the stroke, the victim’s needs will vary. In the event of a worst-case scenario, which usually means severe brain injury, the caregivers’ duties will most likely cover:

  • Medical care
  • Respite access
  • Assistance with incontinence
  • Equipment access
  • Education
  • Social support
  • In-home support
  • Counselling support
  • Future planning.
  • Skills to cope with behavioural problems
  • Skills to cope with the emotional changes
  • Respite access
  • Counselling support
Educational avenues 
  • Social support
  • In-home support
  • Employment opportunities
  • Future planning.
 Support for stroke victim caregivers
  • Local respite agencies
  • StrokeLine: 1800 787 653
  • Brain Injury Association
  • Brain Injury counsellors
  • WA Counsellors association
  • Local hospitals and respite agencies

Conclusion

Stroke patients should keep improving once they’re home, especially if they’re keeping up with daily rehab. However, stroke recovery is not linear. Sometimes patients take two steps forward and one step back.

This is normal.

It’s important to know that a higher recovery is always possible. It doesn’t matter how many years have passed since stroke – the brain is constantly changing all throughout life. Don’t give up if you think you’ve hit the end of the road because you probably haven’t.

The aim of this piece was to level with you, the reader, and to outline the stark and intense realities of what it means to be a caregiver for a stroke patient, to demonstrate some of the tremendous improvements made in this area, and, perhaps most importantly, to thank those who, much of the time, commit to and execute an impossibly difficult and thankless job.

 Caregivers: we thank you.

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