No One Taught Me To Be A Caregiver, but I Learned
I am the only child of two highly successful and independent parents. When my father started to get a bit forgetful, I just attributed it to his absent minded professor mystique. He had a very prominent career as a president of the international division of a heavy truck and equipment manufacturer. He traveled frequently to over 130 countries and regularly met with heads of state. After he retired from this position he began his second career as a graduate school professor in international trade and finance. His IQ was off the charts and I could always count on his rational mind to see through any perceived intellectual difficulty.
One day that all started to change. The signs were so insignificant that I paid no attention. There were odd little quirks in his personality. For example, my husband and I planned a trip with my parents to visit the Oregon coast. I received a call from my Dad and he said that he could not possibly leave as planned because Publisher's Clearing House had sent him a letter stating that he was almost guaranteed to win the latest sweepstakes. I laughed not fully believing his response, but he was dead serious. Then he called one day and asked if my husband could go to the bank with him because he felt that the bank officer was not being honest with him about the timing of a certificate of deposit. Now I knew that something was going on, and Daddy and my Mom visited their family doctor.
When the prognosis came back that Daddy had developed early stage Alzheimer's, we were devastated. He was given prescriptions for medications that may slow the progress of this disease. Mom and I were hopeful, and for a time, life seemed to be somewhat unchanged. After a few years the erosion of his memory became more obvious. Although Daddy never became combative, as sometimes does develop with this illness, he became very restless. He wanted to return to his childhood home and talked of it incessantly. He needed to know where my Mom was every moment. Whenever I came over to stay with him to give Mom a break, he would ask every couple of minutes where she was and when she would return. He also cried constantly.
After this stage, the illness took a new turn. One day in early fall, he was rushed to the hospital. This time it was pneumonia caused by aspiration of liquids into his lungs. Apparently whenever he drank any liquids, instead of swallowing properly he aspirated the liquids into his lungs. An infection developed. We thought we were going to lose him, but the doctors were able to clear the lungs. Because of his weakened condition, he was sent to a rehabilitation facility where he exercised and worked with a speech pathologist to relearn how to properly swallow. It was a difficult situation for him. Despite the fact that Mom and I went to visit him every day and repeated often to him why it was necessary for him to be in rehab, he would forget, cry and felt abandoned. The sense of guilt was hard for me to carry. While my rational mind knew it was the best decision for his well-being, my heart ached for his suffering.
Finally, after one month in this facility he was able to return home. He was healthier and we were so thankful to have more time with him.
Two months later he fell and cracked three ribs. Back into the facility he went. My Mom could not bear to visit him there, so it became my responsibility to visit Daddy every day. I met with his doctor, his therapists, the social worker. I quickly realized that I had surrendered my role as daughter and had been forced into the role of "parent."
From the time of his release from rehab once again, until the eventuality of hospice and his final days, my family role had forever changed. Day after day, year after year, my responsibility was to both my Mom and Daddy. As an only child, I had no one to share the burden. I never had a day off and never took a vacation. I would jump each time the phone would ring, conscious that it may be another emergency.
I finally reached out to get help. I contacted my parent's family physician who agreed that hospice was in order. The first agency we brought in to help ended up creating more problems than solutions. I stood my ground, fired that agency and started interviewing others. I arrived at a good hospice fit and was able to relax a bit knowing that they were there to give reassuring assistance.
When my Daddy died, it was both a devastating loss and a blessing as well. I was relieved that he would no longer have to suffer the ravages of Alzheimer's but brokenhearted that I had lost my beloved father. I never had much time to grieve because I had to be my Mom's emotional rock and also become her caregiver. Mom had developed macular degeneration during my Daddy's illness. She also was diagnosed with congestive heart failure. I renewed my role as caregiver.
I was never trained to take on these responsibilities and ill-equipped to do so initially. It's been two years since Daddy's passing and I still have not had a vacation. I have however learned to pace myself and am accepting the fact that I am not unbreakable and have learned to accept help from others.
As our parents live longer lives, many of us will one day become caregivers. It is a tough job and it will interrupt our own lives, but we accept the responsibility out of love and compassion. My advice for those in this position is this:
Learn to put yourself first. This is essential and is not selfish. If you are exhausted or frustrated, you cannot be a good caregiver. Nor can you be there for anyone else if you become ill. Get plenty of rest. Exercise regularly to reduce stress and eat a healthy diet. A strong and healthy you will make this situation much easier to bear.
Ask for help! I cannot stress this strongly enough. Gather information. Consult local agencies. There are many available, just ask. As the problem of dementia and Alzheimer's increases, more and more community outreach resources have become available. Do start by contacting the Alzheimer's organization. You can attend free classes and will they can provide good information to help you cope.
Join a support group. Burdens are always lessened when they are shared. You are not alone.
Develop a hobby. You may not believe you have the luxury to do this, but you must. Even a short few minutes of the day doing something you enjoy can do wonders to renew your spirit.
Pray! Whatever your faith may be, spend some moments each day in prayer or meditation. If you are a non-believer, then just spend a few moments of each day outside and appreciate that there is a whole wide world much out there much more vast than your own problems. Delight in that wonder.
Finally, just put one foot in front of the other. Instead of worrying incessantly, only deal with the most crucial issue at hand. It does no good to worry about the future, and the past is over so let it go. Focus on the remaining time you have to share with a loved one. Time goes by far too fast. And if you ever need a shoulder to cry on, contact me and I will be glad to share your burden with words of encouragement. I am happy to pay it forward because others have lightened my load.
Susan and Bentley (my loving Yorkie)
Photo Credit: photon_de.