Caregiver Survival Tips

Advice???

There is all kinds of advice and survival tips for caregivers on the internet, in pamphlets from doctors offices, community health services and on it goes however, it has been my experience that the well intended advice is not so easy to follow given the circumstances you can find yourself in and the effects those circumstances have on your own spiritual, mental and emotional well-being. First of all, whatever game or games that you were playing at in life and any wins you were having and any futures you were creating for yourself have all collapsed in on themselves and the life you knew and had before is in a crumpled heap. It is difficult to not follow your broken dreams and forsaken goals into the same crumpled state. Most of the advice is aimed at you, the caregiver, taking care of themselves physically and from my own experience looking after myself physically at times amounted to nothing more than another body to look after. I had to pull myself out of my spiritual, mental, and emotional collapses before I had a hope of looking after and meeting my physical needs.

Caregiver - You Are Not Alone

While the role of family caregiver is too often a lonely one, you are not alone. Currently, in Canada there are over two million people who have taken on or been thrust into the role of caring for a chronically ill or disabled loved one. Seventy-seven percent of these caregivers are women. In the United States it is estimated that one in every four households requires a family member to take on the role of caregiver. That translates into roughly twenty-two million people. Of those approximately forty percent of them are also raising children. These numbers in North America are expected to increase as our society ages. It is a weighty role to take on but a necessary one that can last from a few months to a number of years. I have personally, while raising my family, been cast in the role of caregiver twice. Once when my youngest was seven months old and again when she was thirteen. I have been caring for my chronically ill and disabled husband for the past seven years and at times it has been a daunting task.

Look After Yourself?

If I had the proverbial nickel for every time some well meaning party counseled me to "Look after yourself" I would have added significantly to my savings account with money left over to treat myself to a weekly "day at the spa".  Quite frankly there have been times when I didn't even know what looking after myself looked like and others when I felt that looking after myself was just one more body to look after.  Even though there are so many of us in a caregiving role we are often removed from the society we were once an integral part of.  We no longer feel real to ourselves or others.  The purpose of this writing is to share with you, my fellow caregivers some survival tips I have learned along the way. 

Describe Your Mood Level

What I really needed to look after was my mood level as it often dropped out the bottoms of my shoes.  I would find myself fearful, or angry, or resentful and everything became an effort.  One day, well standing at my kitchen sink I made the decision that I could not go through the rest of this experience feeling resentful.  I did not want to end up with a face that was sour and unhappy looking - it was not my natural state.  As I stood at the kitchen sink I began to play a game - Describe my mood level.  When you describe your mood level - out loud - you are no longer in that mood level as you cannot be in it and describe it at the same time.  The mood moves off of YOU as you describe it and you keep describing it until your mood level is raised significantly.  The lighter you feel, the higher your mood level, the better your attitude the easier it is to go about doing that which needs doing.  Now I catch myself before my mood level hits my shoes and I play "Describe your mood level" before I hit the skids!

Harmony

Being out of harmony with your true nature and your environment is painful and debilitating.  When I find myself out of sorts with my environment or worse yet, fighting my environment I stop whatever it is that I am doing and take a moment to play the Harmony Game. First, I look around the room and find two things that I like.  I then chose from those two things the one that I like best.  I follow that by describing the thing or item out loud including it's purpose or function. I repeat this process choosing another two items and continue doing so until I am back in balance and no longer at odds with my environment.

Gratitude Attitude

Having a gratitude attitude is of vital importance regardless of where you are and what you are doing in life.  When you are out and about in life there are many opportunities to thank another and to be thanked but when you are a caregiver those opportunities seem few and far between as your interactions with others dwindles due to your circumstances.  One way that you can improve your gratitude attitude is to simply list the the people and things in your life that you are grateful for.  The little things count because they do add up and it raises your self esteem and self confidence when you note them.  You can even go so far as to be grateful for yourself!

Express gratitude to others every chance you get - it brings your all important mood level up and you will raise the mood level of the other up in the process. 

Find Excuses

As a caregiver it often seems to me that I have been able to find bomb proof excuses for almost anything that makes any demand on my time, attention or energy other than the care of my "charge". There are times when I have had so much time, attention and energy devoted to that end that I can barely see or hear anything else. For me music helps me to refocus and to feel better. I now find excuses to do things rather than to not do them. Even if that means setting the timer on the microwave for five minutes less than I think it will take me to clean up the kitchen and then trying to beat that time. Or, seeing how much I can get done before the kettle boils for tea or coffee. One of the best excuses I have found is an excuse to get away. In our own home I have carved out a corner of it just for me. I have turned an unoccupied bedroom into my own personal haven and surrounded myself there with things that I love. I have a pager with me so that if my husband needs something I can attend to it. I have considered and probably will invest in a baby monitor so that on those days when he is bedridden I can go about my own pursuits without fear that I will be out of earshot and therefore unresponsive should an emergency arise. 

It is only when I have followed the above processes that I find myself able to take the advice meted out by health professionals and well meaning others. I can eat, rest, exercise, and relax as suggested. I can take the time to educate myself both about my role, what is available to us in the way of assistance and information about my husband's condition. I can reach out to others for support and I can spot when depression begins to roll its nasty clouds my way and head it off before it swallows me up and takes me down. I can pursue some of the things that I love doing, not all, but some and that is a vast improvement over where I have been.

I sincerely hope that my caregiving tips will provide some benefit to you.  I welcome your comments. I would love to hear your stories and some of the ways of coping and surviving and living your best life that you have come up with. I appreciate the role that you have taken on. My hat is off to you and my heart goes out to you!


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Comments 6 comments

Nellieanna profile image

Nellieanna 6 years ago from TEXAS

Dear Heart - I've been there, done that. I want to re-read this more carefully before commenting more fully, if I may. I see it is full of wisdom and real value for one who finds herself/himself in the position of caregiver. I know my own situation was probably vastly less demanding than some, and perhaps vastly more demanding than some. It's really not a comparable position, one to another.

But the common experiences and even the most personal, individual ones have value to others to show that they are not alone, that it is OK to have the myriad of emotions and sensitiviities one experiences and it's even OK to feel the twinges of guilt after the loved one has passed on, when one wishes to have been able to do more, to have - - - etc. I'm going back now to continue reading before continuing to respond with my first thoughts on it. . .

Ah - your tips are so excellent and well devised! I appreciate this, though I'm now out of the caregiving business except for my own self. It's challenging too.

I began to relate my experiences though - but decided it's too much. Suffice it to say that there were those. From the first, I learned to keep myself intact by writing and rereading my poetry. It was not a traditional caregiving situation, but an 18 year marriage to a monster and my focus was on somehow being alive and intact for my children which, I'd been firmly assured, would be at risk otherwise. The deliberate effort to destroy me as a person was ongoing, while my determination to try to stay intact without rocking the boat was also ongoing. Creativity as well as reading and taking very good care of home and family were my salvation. I didn't drive so there was no escape once he had managed to get us on a farm out of reach of transportation, and after he had almost succeeded in cutting me off from any outside contacts except when he chose and was present to monitor.

So when I was faced with caring for a loving second husband, 10 years my senior and after our 25 years of nearly blissful marriage plus 5 of total commitment before our marriage, - and when, for the last seven years of his life, I became caretaker-in-residence, it was not as difficult as it might otherwise have been.

I also had new outlets: my website & a large contingent of internet friends to help, for which he had always been happy for me and supportive, though it was not "his thing" so much.

But the demands were no less strenuous & fraught with frustrations, not because of his dispostion, which was never negative, but only diminsihed - it was more bearable than it might otherwise have been. What oddly made it difficult was probably his strong sense of independence all his life which made it hard for him to admit to needing help in areas he'd always taken care of, but then I had to take over every matter of our rather complicated life with it's dual separate properties and families, as well as caring for him and his well-being.

Neither of us was a spring chicken, either. He was almost 80 when struck with the health issues and I was almost 70. We'd both been robust and worked side-by-side on many a challenging project that much younger folks would have been buffaloed by; and he continued to exude the capability though the reality was, he was rapidly losing it and it was difficult for either of us to realize at first. That in itself was one of the problems: simply to KNOW what was needed and be able to get it attended to!

It presented incredible challenges to me as it progressed, while fortunately for him, except for occasional lucid moments in which he anquished over my burden which he was briefly able to comprehend but unable to relieve, he was increasingly, though relatively, oblivious and happy to find passtimes that he'd never had the chance to pursue - those which required less memory and consecutive thought, of course. He thought I should be able to accompany him constantly as he pursued them, though he tried to maintain an independent attitude as was his nature. But he obviously felt ignored as I scurried around doing the essential chores. I relegated my own personal outlets to nighttime when he slept. I learned to get by with minimum sleep without becoming incapacitated, luckily. One thing is for sure and that is that the caregiver must reserve a space, a time and a mindset to BE.

At the very end - he died two years ago next Sept. - he began to physically really fail on several levels. From the time it started noticeably, though, till it was over, was a relatively short period. And he was fighting it up till his last breath. I feel privileged to have known him and been his sout mate. There are no words to describe how much I miss him and every day I'm aware that I'd have cared for him as long as possible if I could have him alive with me. But of course that's selfish. As it was, his suffering was short and further loss of his faculties would have been extremely painful for him.

I know it was difficult and it felt like a burden many times during those 7 years, but in retrospect, I was given more as a person than I lost, for sure. And the earlier experience had taught me how to deal with many of the issues and challenges of the last.

You are very courageous and my admiration is boundless for you, raisingme. I can more fully understand your online ID name now! We do have to raise our own selves. I once read a book about becoming one's own parent and raising oneself, undoing damage from the original growing-up and being there with oneself as required. It applies at any age and stage of life, when facing unusual obstacles and challenges. Wise is one who grasps that and continues to lead herself/himself wisely along life's paths.


raisingme profile image

raisingme 6 years ago from Fraser Valley, British Columbia Author

I saw your name in my email in box and I smiled - every time I see your name I smile and now I have read what you have written here and I am still smiling...through my tears. I am blessed that you found me Nellieanna, blessed indeed!


malcolmb 6 years ago

This is another excellent piece; I love the powerful but light style. Keep it up my friend!


valery elias profile image

valery elias 6 years ago

Good information about the stress associated with being a caregiver, good advice and recommendations.


prettydarkhorse profile image

prettydarkhorse 6 years ago from US

excellent information Mam, music is a good diversion too as you said to refocus, Maita


susanlang profile image

susanlang 6 years ago

This is a tuff topic when it involves your own personal family members needing the care. Most of us have gone through..or will go through the responsibility of needing to be a care-giver to one of our loved ones no matter young or old.

Im my experience the task can be so heart-wrenching and un-rewarding when it's your family member who you know is near death.

Many times prayers are said and hope is held out only to lose your loved one in the end.

A strong feeling of deep loss hits you first..then as you said here...that feeling of GUILT. Asking yourself why you didn't do more, why you forgot to do this or should have done that. Sometimes we may find ourselves wishing to turn back the clock and START OVER thinking that things would be different the next time around.

I say STOP beating yourself up. No one can change the course of life when a loved one is near death and everything has been done that could or should have been done prior to their life ending.

Nature will take us when it wants to and MANY TIMES no one is to blame.

This hub is very helpful and well written, I had to rate it up!

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