Caring For The Elderly At Home: Rewarding Or More Than You Can Handle? Read This First!
The Prospect of Caring For A Parent
Elder home care is an issue that most of us have experienced or will face. As the population lives longer and medical advances prolong life more than ever before, most of us will be faced with the decision to either become in home caregivers for aging parents in our homes, assist while eldery parents maintain and stay in their own homes or admit someone we love to a nursing facility. Any one of these can be heartwrenching and will change your life forever!
I have cared for both my mother as she died from cancer and my grandmother before she died, well into her 90's. Both experiences were completely different and both left me changed forever. My mother was young and remained mostly independent until the day she died. My mom died when she was 56, just a year younger than I am now. She was a strong-willed woman and in spite of the fact that breast cancer spread through her body and affected every organ and even her bones, she insisted on living in her own home and taking care of herself as much as possible. She was so determined that she even lived 4 years longer than the doctors predicted. Even though she was in great pain most of her last days, she would never allow anyone except me to see her when she was her sickest. If I would pick her up and take her to lunch or her doctors, her hair was done, her makeup was flawless, she was dressed up and even wore matching earrings. She was a little vain, but even now it makes me smile when I think of her strength and her desire to at least appear healthy. If I ever saw her without her earrings or her makeup, I knew she was in agony. When she died, I found countless unopened medication bottles containing pain pills, which she apparently refused to take. The only thing my mother would consent to in the way of outside help was a visiting nurse that would come once a week to bring her medications and evaluate her current medical condition and a housekeeper that would come in once a week to clean. She could no longer paint because the cancer had caused her to become legally blind, so she turned to sketching. Her charcoal and pencil sketches are the works that are my favorites. They are incredible and no one would ever guess that she sketched mostly from memories in her mind; she could see little more than shadows.
My mother would call me on the phone and she would say, "Are you making rice pudding?" I would say, "No mom. Why did you think that?" To which she would respond, "No reason. I just had a feeling that maybe you were making rice pudding for the kids." I would immediately get off the phone and make rice pudding or whatever else she just 'thought I was making'. I would grab the kids, pack up whatever she was craving and head to my mom's house. She was only a few miles away. I was able to check on her all the time. Most times one of my three kids would spend a few days with her. They were young, but they loved being with their grandma. They knew how sick she was. My husband, their dad, died when they were 4, 6 and 10 years old, so they and I had already experienced the horror of death.
My mom got sick shortly after the death of my husband, so my kids participated in her care. They would have done anything to save their grandmother. They knew they were going to lose her, too, and they were more than willing to be her entertainment and companions for the time she had left. We all were. Everytime I make rice pudding or bread pudding today (her most common requests), I think of my mom.
The Second Time Is Different!
Growing up, my favorite person in the world was my grandmother. I would have done anything for her and she for me, so when my grandpa died and my grandma couldn't take care of herself anymore, she came to live with my teenage kids and myself. It was no imposition. It was great! I wouldn't worry about her falling anymore or being alone with no one to help her. She had always enjoyed being with my children and myself. My oldest daughter had recently married, so there was an extra bedroom. We put a comfy couch and a TV in the room so if she ever wanted privacy, she simply went in her room and shut the door. The bathroom right outside her bedroom door was remodeled. I had the bathtub removed and a double shower with a seat and handrails installed. I wanted her to be safe. During the day, I would go to work and the kids would go to school. Her meals would already be in the fridge, waiting for her to just put them in the microwave. Our two dogs stayed by her side as she did whatever she wanted during the day.
When we would get home in the afternoon, the kids would make her laugh with their stories of the day and I would cook dinner, do any dirty laundry and get ready for the next day. Slowly things began to change. Grandma didn't want to go anywhere; she didn't feel good. Her doctors said she was alright, but she wasn't. I was still sorting her meds and making sure she took them without forgetting. She knew something was wrong and I did, too.
One day, while sitting at my desk in my office, I heard sirens and saw the paramedics go by. I knew, even though there were 150,000 people in our town, that those paramedics were headed for my house! My phone rang; it was one of my kids. They had come home early and grandma was sick. They had called the paramedics. I literally flew home! The paramedics assured me that she was not having a heart attack. They were taking her to the hospital as a precaution. I left for the hospital a few minutes after them. When I got there, my grandma was nowhere to be found. I was told that since she was not a cardiac emergency, they had taken her to a hospital 10 miles away. I got back in the car and proceeded to the hospital where my husband had died years ago. This was not a good sign! I had vowed to never walk into that hospital again and now my grandma was there!
The emergency room doctor came to me and said that my grandmother was dying. He was going to put her on life support and I had one hour to get him a copy of her living will. I knew she had one, but I had never looked at it. I drove home, crying the entire time. Memories of my husband flooded back, my grandma was now dying in the same place he had gone to and never returned from. My life was changing again! I wanted my mom, but she wasn't here, either.
By the time I got back, my grandma was on life support. Her heart had stopped 3 times during my absence. The outlook was grim. My children and I began the vigil, as we had done, it seemed, so many times before. For 6 weeks, my grandmother remained unconscious, but she was clinging to life. This woman in her 90's wasn't going anywhere! I knew then where my mom had gotten her fighting spirit.
We took my grandma home 2 and one half months later. She had come back to life! I was going to take care of her, like I had promised from the time I was a child.
Senile Dementia: Grandma Wasn't Here Anymore!
Options no longer existed. The cost of home health care services, even for the 9 hours I would be at work were more than I made working. With that in mind, the decision to stay home or work was no longer a choice. I had to take a leave of absence. My grandmother came home in February of 2000. I took care of her day and night. But illness had taken her. She was no longer the grandma I knew. She was no longer kind or loving. She was mean! The more I helped her, the more she resented it. She had changed. It was okay. She was my grandma and she had just lived through hell. I just knew that as she got stronger, she would come back to us! Towards the end of March of 2000, on my older daughter's birthday, I was not feeling well. I managed to order a dozen roses for her and after that I was unable to get out of bed or move without pain in my lower abdomen. When my son got home at 3:30 in the afternoon, he found me in my bed crying and curled up in pain, with soaking wet hair and a fever. He rushed me to my doctor. My doctor examined me and sent me to the emergency room. Five hours later, my birthday girl, who was now 26 and my 21 year old son were at my side when the doctor came in. The results of the CT scan showed an inoperable tumor. The radiologist and the doctor told us that I would not be leaving the hospital. I had about 7 or 8 days to live! I was 47 and my life had never turned out the way I planned it; why should I think things would be different now? I told the doctor that I would be leaving. She needed to load me up with morphine and I was going to go home and spend the night with my kids. I promised I would come back the next day, but I was going to have one more night with my kids.
My 19 year old daughter had been at work. When she came home, I told her what had happened and what I expected from them all. My youngest knelt by my side. She was crying. She knew I was in pain. She said, "Mom, I can go now and get you some pot. It will help with the pain." Sh**! I couldn't believe it! I knew I needed more time with this one!
Grandma was told and wasn't interested. She went to her room and watched TV. The kids and I spent the night laughing and crying. My children were tough. Not hard, but strong. I knew my two oldest would be fine. They would survive. My youngest? I was not so confident, especially upon hearing the offer of marijuana, but I was comfortable knowing that the two older ones would step up and take control. They would finish with her what I had been unable to finish.
The next day I returned to the hospital. They did operate and I did return home. They removed two 10 pound tumors that had wrapped themselves around every major organ. My children managed to take care of me and their great grandmother. As I recuperated, I noticed that my grandma was not my grandma. I realized that she was suffering from senile dementia. She became more and more isolated, less herself everyday. She started to complain about the care she was receiving. It was never good enough. Her food was not cooked right, her laundry was not done right, she couldn't remember how to work the remote on her TV. She would not let us bathe her or wash her hair. She could remember things that happened 70 years ago, but could not remember what she had for lunch. She would tell us stories about the past and we ate them up. We learned so much history. She was a flapper in the '20's. She frequented the local speakeasy during Prohibition. She worked during World War II and because she was the dietician in a Veteran's hospital during the war, her kids were the only ones in the neighborhood that had fresh fruit, fresh vegetables, butter and chocolate. But then, just as quickly as she would tell the stories, in her next breath she would announce that I was poisoning her food and trying to kill her. There were so many things I could handle, so many battles I was always willing to fight; I was always up for making the problems go away, but this was the worst! I crumbled when my beloved grandmother accused me of trying to kill her. For so long, I had loved this woman with my whole heart! I understand what dementia is, I know what comes with it, but to this day, 10 years later, I cannot get beyond that.
Everyday, my grandma had a new ache or pain. She complained that she could not breathe, that she was dying. She was furious that she was not admitted to the hospital on our numerous trips to the emergency room. Her doctors told me that I was no longer equipped to provide her with the care she needed. She needed round the clock nursing care, not in the hospital, but in a skilled nursing facility. I made the arrangements, found the best facility I could. I checked their records to see if they had ever been accused of abuse or how their care standards measured up. When her doctors told her that she needed to go, grandma refused. She told me that my illness was imagined, telling her that I was sick was an excuse to get rid of her!
During the final days, my children intervened. The girls tried to talk to their great grandma, but then they became the enemy, too. I finally called my uncle (her son) and told him I needed help. He was on the other side of the country, but came out and took her home with him. Within a week, my grandmother was in a nursing facility. He could not take care of her, either.
Grandma died a few months later. I did not go for the funeral. My grandmother had left me that day in the emergency room, in that hospital where my husband had died.
Before You Make The Decision, Know What You Might Face!
It is human nature to love our families. Nurture is natural for most of us. Abandoning our elderly parents, even our grandparents would never come to mind. But before you make the decision to provide elder care in your home, think carefully. Decide whether you can do it or not. Some people can't. Know what to expect and be prepared for it to happen. Set up the best support system you can. Make sure that you, as a caregiver, have time away. Watch out for depression, your own! Caregiver depression is common. You will become isolated, too. Caregiving will change your life. Know that and accept it or do not become a caregiver. Also, make a deal with yourself. Know that you are human and that you have limits. When you are no longer able to provide care, when the medical issues are greater than your training, be willing to let go. It is not weakness. It does not indicate lack of love. Do not feel guilty.