There are a ton of things that no one tells you before you become a caregiver. When my Mom asked me to move in with her and help take care of her I had no idea what I was getting myself into. I didn’t know that I was entering into an emotional roller coaster that would throw me up and down for over six years. It is especially hard when you are the caregiver of a family member. It is the toughest job in the world.
Naively I thought that my Mom, by working in a hospital for so many years, would know to take care of herself. She had a near fatal heart attack combined with possible Legionnaire’s disease in 1998. She was not supposed to make it but those who counted Mom out didn’t realize how stubborn she was. That stubbornness kept her alive and me wanting to scream. Her heart towards the end had a 15% ejection fraction. She had congestive heart failure. Even though she knew better Mom wasn’t going to take proper care of her self.
Mom went into a deep depression after Dad died in 1999. She lost the will to live. He had been her only love and they had married when she was seventeen and the marriage lasted 55 years until his death of a sudden heart attack. I believe part of Mom’s refusal to take care of her self was a death wish. Mom was very religious and believed that when she died she would join Dad in Heaven. It doesn’t make the job any easier for the caregiver. Your responsibility is to take care of the patient. The patient knows they are ill and if they are at the point where they need a caregiver they know that they are not going to live a long time. They may actually want to die. They are getting tired. It was emotionally devastating to know that Mom no longer wanted to live. It was only in the last five years of her life, after she adopted her cat Pixie that Mom really started wanting to live again.
Sometimes the simplest things become the hardest to manage. In my Mom’s case it was like pulling teeth to get her to eat. She would eat only small portions and her weight kept going down and down. She was 94 pounds when she died. She looked like a skeleton covered with skin she was so thin. I did everything I could to get her to eat but even when she tried to force herself the years of not eating regularly took their toll. Sometime I could manage to get a decent meal down her but not often enough.
Mom refused to admit that she could no longer do everything she did when she was younger. When I finally got her to retire at age 82 I hoped that she would settle down and take it easy. I came home one winter’s day to find a couple of strange men shoveling snow from our very long driveway. It turned out that they had been driving by and saw my Mom trying to shovel the snow before I got home and stopped and took over from her. It was one of those silent scream moments. It did no good to try and talk sense into my Mom so I did the only thing I could and thanked them and paid them for their trouble.
One of the most frustrating things for me was the lack of help from my family. Even though my older brother lived with us it was up to me to try and take care of Mom and get her to behave. He couldn’t cope with her. Only one of my younger brothers came to see her when it was close to the end. He came twice once for Christmas and once to introduce his fiancée. One brother couldn’t come because of poor health but he called often times asking for money. The youngest came once when I was there and then refused to come out again. He didn’t even come to her Memorial Mass. So if you think you are going to get help from family then think again. They can’t cope. It will be up to you to take care of your loved one although they will be sure to let you know what you are doing wrong.
In the end you will be torn apart as they die in spite of the tender loving care you gave them. You will get a call like I did from my brother telling me to come home right away because Mom was gone. She died in her sleep. I had to work full time to take care of bills and cared for her in the evenings and weekends. You will be the one to have to tell the family that your loved one is gone. It was wrenching in 1999 when I had to tell the family of Dad’s death. It was no easier in 2010 to tell them Mom was gone.
So why should anyone turn his or her life upside down to become a caregiver? It is frustrating. It is painful. You will find yourself exhausted and in tears. You will want to scream and can’t because it would upset the patient. Why do it?
You become a caregiver for many reasons. In my case I loved my Mom even though we had our differences when I was growing up. Their was no one else who was willing to do the job. I was her only daughter and she asked me because a son couldn’t do some of the things she needed done like fixing the sores on her back. You do it because you can’t bear to see your loved one put in a nursing home if you can take care of them yourselves. Sometimes it will only be a stopgap and you will have to in the end put them in constant care but you fight until the last minute before you take that step. You do it because they need you.
Are there any rewards? Yes there are rewards. My Mom and I became closer then we had ever been. I think she finally understood me as a person and respected me. As hard as it is to be a caregiver at the end of the road you did the right thing. You were there for them. You made their life easier. In spite of all the pain you have the knowledge that in the end you were the one that was willing to make the sacrifice. You were not afraid to take on the challenge. You found a strength in you that you never thought you had. You found in yourself the ultimate of love and compassion. You did the right thing and no one will ever be able to take that away from you. You have found that after the storm you have your own personal rainbow. If you are lucky you may also find that the little black cat with gold eyes who helped you as a caregiver is now a part of your life and giving her love to you. After all we shared Mom’s love it is only fitting that in the end we have each other to love.