A JOURNEY OF LOVE ( A Caregiver’s Journey)
“Be kind , for everyone you meet is fighting a hard battle .”
” The doctor must have made a mistake in the diagnosis!” So exclaimed my mother when the doctor gave the prognosis that she was suffering from pancreatic cancer.
This fact of denial or shock by my Mother caused me unconsciously to do several things: the first was to be proactive . That meant I had to try and control events and not try to react to the negative news of my mother’s cancer.
Secondly , I also had to learn how to adjust to a changing situation. In the past, my mother was exercising her role as a parent, loving, caring and nurturing . Now in a case of role reversal , I found myself as a parent, loving , caring and nurturing her, despite the anger and tantrums she was showing because of the excruciating and indescribable pain she was enduring as a cancer sufferer.
Thirdly, I had to have a group of friends who were or are caregivers. That was essential to me as my support group.
With this brief introduction, I shall then deal with the points outlined above.
(1) HOW TO BE PROACTIVE:
(a) Read up as much as you can about the patient’s illness. In this case, I found out that Steve Jobs, the founder of Apple and IPhone, had pancreatic cancer, and so did Patrick Swayze, the thespian who acted in ” Dirty Dancing” and “Ghost.” Reading about these people’s struggles enabled me to be comforted , as I knew that my Mother and I were not alone in this battle.
(b) Keep a journal, with different sections for important telephone numbers of doctors, nurses and friends. Another section should be devoted to hospital appointments and the doctor’s prognosis as the illness progresses. It would be helpful to have another section devoted to various websites explaining about the patient’s illness and how to care the patient from home.
As a simple illustration, a good friend gave me a daily planner which could obtained from ” Popular Bookstore.” From the journal , I was able to give accurate information to the doctors about the time that I gave my mother her medication, or my mother’s refusal to do so.
Remember that this type of information will make a difference between an indifferent or reckless caregiver and a conscientious or effective caregiver.
Indeed on hindsight, I realised that I subconsciously put into practice one of the ” 7 habits of Highly Effective People,” espoused and written by Steven R Covey. That habit is to be proactive instead of being reactive to a problem.
Steven R. Covey cited an example of being reactive to a problem. When he was young, he constantly heard his Grandmother complaining about rising prices. This was out of her control. It never occurred to her that this might be due to inflation. Then again, she might not have understood about inflation.
He then went on to advise that we should be proactive instead, so that we can be in control of circumstances.
(2) WHY AND HOW ONE SHOULD LOVE YOURSELF
As a Christian, I try to practise one of the Ten Commandments. That is to “love your neighbour as yourself.” If we examine those words, we have not only to love our Neighbour, but we also to love ourself.
This is important because a lot of attention is given to the patient’s needs, and relatives and friends may forget that the caregiver is in need of a break or time out. Some caregivers have husbands and or children who also need their attention. Hence, the caregiver’s ” love-tank” may be empty, after giving out so much .
If the caregiver has to look to others to fill up that “love tank” , the caregiver maybe disappointed. This is especially in the case of those who care for dementia patients. That is because their loved ones may not remember them.
Hence the caregiver has to find ways of filling up that love tank.
I write with great empathy because one of my former neighbours who was very loving towards his wife forgot her name before he died. His character took a turn for the worse, as he shouted and even spat at his eldest daughter who worked for him previously in his business.
So this leads onto the other question of how to love oneself.
The answer is to spend time doing something uplifting when the patient is asleep. This can be done by listening to some music, whether it be classical , spiritual, pop or whatever.
If one is able to play a musical instrument or sing, then this outlet can help give expression to the frustrations, pain or suffering that one is going through.
Artistic friends of mine also gave vent to their feelings by drawing or painting and posting them on Facebook.
On my part, I used to write books for children, or pray because I needed the spiritual strength and joy to carry on.
(3) HAVING A SUPPORT GROUP
The old adage that ” No man is an island” is true. Therefore a support group is important as we come together to synergies our strengths . Synergy is also one of the” 7 habits of effective people” which Steven R Covey advocates.
Therefore a support group is important as we come together to synergise our strengths.
– by Patricia Chew
