.Caregiver of the Month
I am truly honored to be chosen for this month's Spotlight. All of you are wonderful, caring individuals who have given me so much support in my time of need.
I was born in December of 1963 and grew up in Mahwah, N.J. in a typical middle class neighborhood. I was third in line of four children. Due to my mother having numerous miscarriages, I was not born until my mother was 36 years old and two years later my youngest brother was born. The oldest child was Donna, my sister, who died in an automobile accident when her boyfriend, who was driving struck a utility pole. Her head slammed into the dash and she remained in a coma on a ventilator until several doctors convinced my parents that she would be a vegetable for life; unable to breathe on her own.
Her life support was disconnected and she was gone - just 7 days after the accident on May 7, 1973. I recall coming home from the last hospital visit after seeing my sister in a coma and my father saying, "You are very quiet Susie." I wanted to cry and scream, but I sat there blank. I was ten years old and we had shared our bedroom. I could not handle the empty bed across from me night after night; yet I was sure she would return. My parents gave me their bedroom and they moved into mine. This helped, I guess. Life was never the same after my sister's death. I assume my parents were afraid to get to close too us kids after that. My father just spent his time working on the house or building things in the basement, alone. My mother became depressed.
I recall attending her funeral and everyone telling my parents how sorry they were. I noticed that it appeared that no one really seemed to realize that we, my brothers and I, were hurting too. I didn't do much grieving. I held so much in because I did not want to bother my parents and it may have come out as anger. Later some anxiety surfaced. As I grew older, I really felt cheated loosing my sister and I hurt for all she would never experience. I recall trying to write the same way as her or I would become interested in the things she had liked. I guess it was a way of not ever saying goodbye. There is also a lot I do not remember. That could be how we block things out that are so very painful. Or, that's what I do.
As an adult now, I can certainly understand what my parents were experiencing. However as a teenager, I was very angry. I found that I was unable to get close to anyone or maintain close relationships, especially as I grew older. It's like I would intentionally sabotage my relationships. I believe I sabotaged them to dodge love. I was afraid to get too close for fear something would happen to them and I would be abandoned again. The anger was a defense mechanism for me to protect my own heart. This allowed me to push people away and not feel bad about my behavior.
My relationship with my father was particularly strained. He was difficult and unforgiving. If you attempted to apologize for something you felt you did wrong, you would hear "I do not want to hear. ' I am sorry, it's done."" My mother would tell him not to tell the children not to apologize. But, he always won those battles. He could be so sarcastic and he had a deep powerful voice that would scare me when he called my name. He could not say, "I love you." He tried to show it in other ways. He did not hug his children at all - ever.
My father never spent much time with my brothers after they started getting into trouble too. He pulled further away. No one attended my younger brother's football games but me. I wanted to learn the piano and sing, my father wouldn't hear of it. I asked for a chalkboard when I was approximately 11 so I could write my father notes. (So we could somehow communicate). I would write, "good morning, have a nice day." He started writing back. The loss of my sister caused me to question my own death, so I began leaving notes in old books like "Susie was here, 1975." I have actually found some of those notes when I sold my fathers home 25 or so years later! I think I was trying to mark my place in the world in the event I died too. My mother began to worry too much. If someone wasn't home on time, she worried they were dead. No more family Sunday bowling and we ceased attending church on Sundays. This is what an accidental death to a child did to our family.
I met a man at 18 and my daughter Amy was born. We married shortly thereafter. It was a disaster of a marriage and did not last long. I then met another man where I worked at the time and we moved in together. I was in love again, I thought.
My parents were from the old school. Mom didn't work and Dad did nothing but work. Mom was very meek and my father the opposite. At 41, my mother suffered a heart attack while shoveling the snowy driveway. She wanted to make way for my father when he came home from work. I do not recall much except having my grandmother there to assist until Mom returned. I know a bypass was suggested and my parents declined. As the years went by Mom had other heart attacks. Mom couldn't participate in anything strenuous, and actually, she didn't leave the house much other than to grocery shop. Life was hard growing up there. Due to Mom's health condition, I was scared to get angry with my mother and yell at her, as teenagers will. I was afraid to cause her another heart attack. Her health and mind kept her from taking a walk with me or doing something fun. Friend’s mothers would be into things like taking their daughters out on the spur of the moment, etc. I was jealous at times. She was depressed a lot and I would say, "you are never in a good mood". I would become so very frustrated with her about that. She didn't have much of a response. Some things I know she would not do because my father had a jealous bone. She had to answer the phone every day at noon when he called for work. She would plan her whole day around that call and dinner had to be on the table at 5:15PM. They rarely went out. Her hospitalizations were upsetting. When she came home we would all try to be quiet and not disrupt her.
My father retired and he and my mother relocated to Virginia. Later my daughter and I moved to VA as well. I built a career, went to night school and maintained my own apartment. Then when I was approximately 28, my mother developed breast cancer and had to have one breast removed along with many lymph nodes. The cancer was gone. Next came the fire in the breaker box in my parent's laundry room. My father was asleep and my mother panicked and ran up the stairs to wake my father, causing her another heart attack. She ended up in the hospital and she appeared to be doing fine. The doctors were going to perform an angiogram, which they said, had a 1- percent chance of a stroke. I was devastated and remained optimistic that everything would be okay. I read about it and told my mother all about what I had learned and that she would be okay. The morning of the surgery I went to the hospital before she went under. I remember how terrified and vulnerable she looked, so I held back my tears.
My daughter was young, and worried about her Nana. They were very close. After much healing, my mother was disgusted with her appearance and the scar. We were able to find her a real good bra made for woman with this condition. You couldn't tell the difference and she felt better. She even obtained a part time job in a crafts store.
I was at work, it was 1994, when I got the frantic call from my father, "You mother had a stroke and is paralyzed." I had no idea what a stroke was. I rushed to the hospital and she was a mess. She was hallucinating. The nurses said she woke up that way. She could barely speak or make sense, nor move her right side. The time arrived and she was to be moved to an in-house rehab facility. However, there were no beds for a week. So, due to insurance, we were forced to bring her home for a week. She had a catheter and we had to keep turning her, etc. I was new at this and my father refused to allow my brother's to assist because of my mother being naked when bathed, etc. I had worked in nursing homes as a teen and I was not afraid to help with her care. But I wanted the woman I knew back, and this was a stranger. My father exhausted himself. He almost fell asleep while driving. My father was up at the hospital almost every day, but he was in denial. He said he just wanted her back in the kitchen cooking. I knew this would never be again. Not after seeing her there in the rehab facility. But I encouraged his optimism. We had no help from relatives as one grandmother had passed and the other was in a nursing home.
My mother made it through three months of rehab. When she returned home she still could not walk but she was able to speak A LITTLE BIT. She would sit in her wheelchair watching cartoons because she cold no longer grasp real programs. She had no use of her right arm either. Sadly, about two months later she suffered a collapsed valve in her heart where the stint had been placed and they performed surgery again. One month later she suffered another massive stroke and we ended up removing her feeding tube, as she was brain dead. Only her brain stem was working. She lived 12 days.
I recall coming up to see my mother after the feeding tube had been removed and her eyes were fixated and lifeless. I put my face right up to her and my eyes in-line with hers and said, "Mom, can you hear me, can you see me, do something." Nothing. I began sobbing. I guess I was sobbing so loud a nurse came in and put her arm around me and started walking me down the hall. She said you mother is not in any pain. But I was. My mother was cremated so there was not a funeral or final Goodbyes. My father asked me to clean out her side of the closet. He gave me my mother's wedding ring. My father could not hug me, even when I stood in front of him sobbing. I lost weight because I could not eat much for a while after her death. My daughter cried and cried. She missed her Nana and now her Mommy was sad too. But after a year or so, I could talk about it without the stinging pain. I write her Mother's day poems that I place over the case she is in. My father just worked and worked out of his house and then approx. one year after her death he told me that he hoped I understand, but he wanted someone he could go out to dinner with, some companionship once in a while. So he placed an ad in the local paper and he did meet someone. He never remarried.
Both grandfathers had died years ago. My father's brother had passed in 1995, a sister years before. Then in October of 1995 I received a call from the hospital that my father was in emergency surgery (my father asked that they call me) as he had an aneurism that was about to burst in his belly. I rushed to the hospital where he was in ICU for five days and then I had to take him home and care for him for a month until he was fully recovered. I couldn't help think, will this ever stop. Then I felt guilty for thinking that and reflected on where I may be some day. Perhaps it could be the same situation?
Almost five years to the day after my mother died, my father had a heart attack and was told it was CHF. He went home from the hospital and continued to work at home. I did not know, but he had taken himself off of his BP medication, I still do not know why. A week or so later my brother called after finding my father in bed, paralyzed on the left side and shallow breathing. Another massive stroke hit. He was in a coma and in the hospital for several months. He was in diapers, a feeding tube and made no sense when he spoke. He thought the TV remote had lotion in it and that it spit out nails. The doctors said if he could not start staying awake longer, he could not attend in-house rehab and he would need to be placed in a nursing home. Dad managed to make it to rehab.
I was shocked at his condition in the hospital at times. I walked into his room once and he was lying on the floor in a diaper with four nurses standing around. I shouted, "What happened?" They said he had slid out of the chair (it's like a bed chair they strap you in with Velcro). They were waiting for security to come to lift him back into bed. I said "He weighs about 125 lbs and there are four of you, now five (including me), lets get my poor father in bed and a warm blanket.' It was freezing in there. We did. Three months PASSED and he still could not walk. Then we took him to day rehab after that. There he learned to walk (he still drags his left leg) but the functioning in his arm never returned.
The diapers, the demands, the craziness of it all were wearing me so very thin. I sold his home and found an assisted living facility. I would leave work, run there, feed his little dog, (because my dad wasn't capable of caring for the dog), clean and run home. After a year he wanted out. He has lived with me since 2001 in a new house. It has been a constant bombardment of medications, doctor appointments, demands, irrational behavior, etc. I have missed a lot of work too. However, in late 2001 his CHF became severe and a Pacemaker/ICD was placed in his chest. Since then, it's ER visits regularly. Now it's every month to two months. I have watched him go down hill.
This has been an emotionally overwhelming time for me having to juggle work where I under the constant pressure of losing a job I love because so few understand what I am challenged with. I feel frustrated, helpless and have beaten myself up verbally and emotionally for not being to juggle it all. But I can do only so much. Doctors treat my father as if there is nothing left to do to keep him comfortable. I must constantly fight and advocate on his behalf so that he doesn't choke and suffer. I am torn between helping him to remain alive and comfortable; as I have mixed feelings. My father also has COPD and yet he still will smoke in between breathing treatments. I have been afraid to imagine what my life would be like once he died.
In June of 2003, my then 19-year-old daughter informed me she was pregnant and thus began that path. She was my help and now I was thinking, "more to take care of!" I stood by her and she remained living with me. The baby was born on March 15, 2004. She is still helping me with my father and for that I am glad. It worked out better than I thought it would.
Eighteen months ago I met a wonderful man, Stewart, who has been a big help to my father and I, he is a Godsend.
In the beginning when dad came to live with me I was resentful, felt guilty, frustrated and felt unappreciated. I realized as time went on that he was just a man, and old, frail, tired man: a man who was once so strong and scary at times. I realized how hard this must be for him too. The layers were slowly peeling away. I caught him crying at a TV show. He actually told me he loved me and called me his angel. He reminded me not to be coarse to others, as he had been in his life because it was "wrong" he said. He spends a lot of alone time and he is coming to peace with the new person he is and forgiving himself and others. I have learned that he couldn't say I love you, because he never heard it either. He had a rough, rough childhood and considering where he came from, he did quite well for himself and my parents were married 49 years when my mother died. So this man is a good man.
We have both learned from one another these past few years to have patience, to appreciate little things in life. Mostly, I have learned how strong the human will is. At first the thought of him passing terrified me. I analyzed this fear and came to the conclusion that it was a selfish reason. I was afraid of being an orphan, silly as that may sound. There is something solid in having at least one parent in your life even if you are caring for them as I have. But as time marched on, and more and more events occurred, hospital stays, etc., I came to the realization that I have no such power to say he stays or goes. That is up to the Lord. I found an inner peace in that. There's no magic to this. So I decided to appreciate each day with him, and I am now at peace of that transition when it occurs. I no longer get hysterical every time I have to call 911.
In the end, I will remember everything. Even when he drank the kitty milk out of the fridge thinking it was regular milk! So many things will make me laugh and smile. Like his glasses on the table with a can of ensure nearby. When I go to the supermarket I know I will find myself checking the sodium contents on everything! I will also always keep at least one can of ensure in my fridge. I also know I will never be the same person I once was. This may not be a bad thing. I learned that he wishes he were more compassionate; so I am learning to be with others too. He listens to his church programs and I catch myself listening hard. He is teaching me too. He taught me that in the end, love, compassion and forgiveness are the most important things in life. How we run and run and when our time comes, I do not want to be full of regrets. After all, no one in the end says, "I wish I would have worked more." I also heard somewhere that it is not the day you were born or the day you die that counts; it's what you did with dash in between. I try to keep that in mind now.
I will say that through all of this, I know when he has passed and I come home from work every day I will miss him so. But I know I have done all that I can and I thank God for the time we have had to clear up the past and heal.
I also thank God for all of you and your support.