10 Keys to Surviving the Emotional Roller Coaster of Palliative Care-Giving

by Glynis Sherwood MEd

10 Keys to Surviving the Emotional Roller Coaster of Palliative Care-Giving - image  on https://glynissherwood.com
Dedicated to Cleveland Amory Sherwood 1998 – September 20, 2011
The best cat ever! 

 

I started to write this post a couple of weeks ago.  Since that time I have had to carry out the excruciating decision to euthanize my sweet tabby cat Cleveland due to the ravages of cancer.  Cleveland died only 2 ½ months after his diagnosis.  It spread through him like a bush fire.  I was his nurse throughout this ordeal.  Being his care giver was both an honor and a heartbreaking experience.  The article below is written in the present tense – while Cleveland was still alive – and is a reflection on what I learned as an end of life care-giver.


Fear is the psychological reaction to danger; grief the reaction to the numerous losses that are likely to occur in the course of an illness that is approaching a fatal outcome.  

~ Colin Murray Parkes, Psychiatrist

 

Those of you who read my Blog regularly know that for the past few months I have been providing intensive care for my beautiful – inside and out – cat Cleveland who has nasal cancer.  Cleveland is an integral part of my family, and the prospect of losing him is like that of losing a child.  In a word, heartbreaking. I was never blessed with human children, and animals are a focal point of my life.  To paraphrase Isaac Bashevis Singer:  My religion is vegetarianism.  I know from listening to my heart that my emotions could not be any deeper if I was caring for a beloved human being.

The Wear and Tear of Palliative Care-Giving

This past week Cleveland almost lost his life twice.  In each case he rallied.  Surviving each crisis stirs up hope as well as considerable fear, sadness and feelings of helplessness.  This is the emotional roller coaster of the long term care giver.  It has got me thinking hard about the best ways to cope during this time of uncertainty.

The end-of-life care giver struggles with ongoing difficulties that contribute to stress and grief.  From my own personal experience I would identify these challenges as:  1/ The ‘Problem’ of Uncertainty – not knowing the outcome of treatment interventions, whether the care you are giving is making a difference, whether your loved one is getting better or worse, or is in limbo; 2/ Anticipatory Grief – this grief sets in when you sense that your loved one is going to die, regardless of any interventions;  3/ Not knowing when to hold on to hope versus when it’s time to let go; 4/ Deep Sadness and Sorrow – over your loved one’s suffering, and the loss of the life – and relationship you shared – they had when they were healthy; 5/ Disenfranchised Grief – socially unrecognized grief, which in my case is grieving for a cat;  6/ Fatal Illness Strain – the sinking feeling that the odds are stacked against your loved one, and the inability to predict if or when the disease will take your loved one’s life; 7/ Faint Hope – The intensely draining daily ups and downs of thinking Cleveland was dying to believing he would make it; 8/ Desire to Save Your Loved One – The exhausting and sometimes frantic, research to find a cure; 9/ Helplessness – Feeling powerless against a force – in this case Cancer – that is unknowable, unpredictable and possibly much more powerful that your best intentions or interventions; 10/  Fear –  the ongoing reaction to ‘danger’ of impending or actual loss.

How To Survive As A Palliative Care-Giver

Below is a list of home-grown knowledge and wisdom I have acquired first hand through this painful but meaningful experience of care-giving.  If you are or will be providing care to a critically ill loved one please do:

1.    Appreciate Your Efforts – Care-giving is a labor of love that will likely improve the quality of life of your loved one.  Forgive yourself for not being able to be there 24 hours a day if you must go out to work, take care of other family members, etc.

2.    Create Healthy Boundaries – Respite and balance are critical.  Take frequent breaks that get you out of the house for a change of scenes.  Pick activities that are light, inspire hope and boost your spirits.

3.    Resist the anxiety fueled ‘need’ to be there all the time keeping vigil ‘just in case’.  Learn about the stages of the illness you are dealing with so you know what to anticipate, and are more able to recognize danger signs (sometimes hard to know), otherwise your constant vigil can increase your anxiety.

4.    Accept that it’s normal to feel afraid, sad, helpless and hopeful all at the same time.

5.    Get Emotional Support –  Near death experiences like my recent experience with Cleveland are traumatizing, and I needed to not deal with it on my own.

6.    Avoid Perfectionism – Lower the bar, especially given the unknowns and things you can’t control.

7.    Unload – Express grief in the early stages of illness, it will make it easier to cope when faced with additional losses. Talk to supportive, understanding people who don’t judge or give unsolicited advice.

8.    Stop Procrastination – Anxiety about your loved one can lead to procrastination.  Identify one important thing that you ‘must’ do for your self the night before and then do it the next day.

9.    Delegate – If possible find helper(s) who can step in to take over certain tasks, give you a break, etc.

10.    Exercise – Do this daily as much as possible.  Exercise is one of the few activities that has been demonstrated to reduce anxiety and depression.


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Need help dealing with loss and grief?   Visit my Grief & Loss Counselling web page

Counselling is available online by Video worldwide.

Glynis Sherwood – MEd, Canadian Certified Counsellor, Registered Clinical Counsellor, specializes in helping people recover from all kinds of Loss, Grief and Stuck Grief – aka ‘the pain that won’t go away.

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