It has been over three years since my husband’s death and, while there are some memories – both good and bad – that will never go away, I have come to terms with one of the toughest of them. I suppose it’s normal to feel a certain amount of responsibility toward those we love, be it parent, sibling, spouse or child. When we feel ineffectual at protecting or comforting them, it is surely universal to feel twinges of guilt at not having done more – or at not having been able to do more.
Those bugaboos pop up at unexpected and inconvenient times, in addition to the expected such as holidays and anniversaries. Regrets over silly disagreements, or neglected expressions of love or appreciation, become magnified and sorrowful. Misunderstandings and petty slights loom large and hurtful in the wee hours of the morning when an unhappy episode forces its way into a dream. At certain times, we chastise ourselves for not having put forth a bit more effort to add a bit of joy to the invalid’s dreary life. At other times, we feel twinges of anger and resentment at the demands made on us, the lack of appreciation for sacrifices we made, and the affects those demands have had on our health, both mental and physical, in the years since.
The effects on my own physical health have drastically changed my life from what I might have expected. At times I feel resentful of the demands that were made upon me. At other times, I am glad that I was able to do those things.
Beyond those mixed feelings, I have admitted that I should have sought more help and considered the effect it all was having on my future health. I wish I had been able to believe and follow the advice contained in the following document. This Caregivers Bill of Rights was given to me by a niece, and I’d like to share it with you. Anybody who is responsible for the daily care of a loved one who demands or requires physical and emotional attention should read it and give careful thought to the issues it addresses.
CAREGIVERS BILL OF RIGHTS
I have the right…to take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.
I have the right…to seek help from others even though my loved one may object. I recognize the limits of my own endurance and strength.
I have the right…to maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for the person, and I have the right to do some things just for myself.
I have the right…to get angry, be depressed, and express other difficult feelings occasionally.
I have the right…to reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt and/or depression.
I have the right…to receive consideration, affection, forgiveness, and acceptance from my loved one for what I do, for as long as I offer these qualities in return.
I have the right…to take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.
I have the right…to protect my individuality and the right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help.
I have the right…to expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our county, similar strides will be made toward aiding and supporting caregivers.