Caregiver of the Month Spotlight
I moved back home in March 2001 to care for Dad after he had become a victim of a home invasion burglary. He was 84 years old when four men came into his home to rob him. During the robbery, one of the thugs kicked Dad down on the basement floor and broke his hip. Then they looted the place and left. He had to crawl to the phone and it took several hours before he was able to call for help.
I am happy to be caring for my father even though I wish the circumstances were different. I wish that he had not suffered so much during these last few years and still had his independence. For me, however, it is like having another chance at childhood - only harder and more stressful. When Gail asked me to write my caregiving experiences for the Empowering Caregivers website, I was surprised and delighted to share the story of my life. It truly was a lucky break to have found this website and such wonderful and caring people. The advice and support I have received over the past few months have helped me to address the most difficult caregiving issues and move forward for the first time. Thank you, Gail, for giving me the spotlight!
Let me start out by saying that when I count my blessings in life, my father is up at the top of the list. I am very thankful for his stable influence in my life. He is the only one in the family that has consistently cared for and supported me in my life. I expected this time would likely come and fall to me to be the caregiver of my parents. All of the siblings had conveniently moved out of state many years ago which was just fine with me. This caregiving experience has only confirmed my feelings that our sibling relationship has been divergent.
We had a secure home life growing up in Washington State. Although, by the time I was born, my parents, Jane and Dietrick Jones, already had two girls, Jana and Marna. I was the baby of the family, an unexpected child, born within minutes after the doctor delivered my twin brother, Gary. Before I came along, my two older sisters had already formed their little “sibling bond.” They were happy to accept a little brother, but I was more like a little “bother” to them. They were not thrilled to have another girl in the family.
To make matters worse, my mother was not particularly a warm and loving mother. She was alcoholic and verbally abusive. Gary was (and still is) her pride and joy. I am sure that my sisters felt justified in treating me exactly as mother treated them. They did not want me to play in their games and I was oftentimes told to “get lost.” In family fights, if it came down to taking sides on any issue; I could not even count on having my own twin brother on my side. I was an “outsider” in my own family. As a result, I have gotten lost and conveniently remembered only when Dad needed someone to care for him. After all, they were busy and really did not have time to have to worry about Dad.
The siblings did come to visit, as a result of the home invasion incident. They all made an effort to show Dad that they were concerned. However, afterwards, it was out of sight, out of mind. Beloved brother, Gary, fixed the rotting deck off the living room that had been unsafe for years. Jana, the oldest and wealthiest, had a new oven and dishwasher installed in the kitchen. Dad’s favorite daughter, middle sister Marna Dearest, visited with her friends, washed the basement floors and invited my 19-year-old son (and only child, K,) to live with her in Louisiana. Her story was that she was lonely there and wanted “family” around.
So, soon it was just Dad and I left. Dad was in a care facility for a month after his hip operation. I was stuck taking care of his obnoxious cat, Smokey. Smokey never failed to piss on my bed at night or, upon rising, mark the outfit I had chosen to wear that day. I visited at least three times a day at the Life Care place (oftentimes smelling of cat urine) and checking out their food carts for something edible for Dad (even if it was just hot chocolate for breakfast.) When I finally was able to get him out of there, he had lost weight and had acute bedsores on both of his heels. In fact, they were so bad that one of them would not heal properly with in-home nursing treatment. By the time we were able to see a doctor, he was in serious danger of losing his leg as a result. We got through that, thank God, and he still has both his legs. After Dad got back in his home, he recovered remarkably well and was able to get around the house to a limited degree quickly after such a serious hip operation. The orthopedic surgeon informed us that many people have difficulty surviving such an operation, regardless of their age. He showed Dad the x-ray and the metal pin in his hip and it appeared to be a good-sized piece of metal. Dad talked about that for weeks.
I had to make some decisions during this time. I did not want Dad to feel that his independence was gone. In addition, I needed to think of myself and what to do with my life at this point. I decided to sign up for some courses at DeVry to learn more about computers and technology. The school was brand new at this point and accepted my application. I now go to school part time and am genuinely grateful to be there. It has saved my sanity to have something else in my life other than caregiving. Even though my debt ratio has risen, I am meeting intelligent people who are investing in themselves. This helps me to survive these caregiving years.
I had become clear to me that Dad could never live alone again. He was not safe by himself in this virtually isolated location. The environment had changed since childhood. Weyerhaeuser Company (which is an international forest products company founded in 1900) had built their corporate headquarters around the corner from us. The house now sits between two Weyerhaeuser properties, which the company allows to remain in their “natural” state. What that means is that blackberries are leaping over and under the fences on both sides of the property. The one immediate neighbor had passed away the previous year so her house was vacant and the only other neighbor was in a nursing home and her house inhabited by a grandkid while her sons were making a deal to sell to Weyerhaeuser. The grandson was a suspect in my mind. Nobody was ever arrested for the home invasion and who knows what all was stolen. All I know is that among the items stolen was all the heirloom jewelry that I had inherited from my great-aunts. Along with that, they took my life, as I had known it. I became Dad’s caregiver, made the decision to become a dedicated caregiver, pursue my education, practice the art of healing and care for a growing number of animals. We now have two wild cats and two wayward dogs..
Dad needed help to do the many things required to take care of a large place. My job now included being the maintenance worker on the home and property. Well, what can I say? The family home is an almost 50-year-old large house on an acre of land with several outbuildings. During our very first winter together, the roof on the lathe house collapsed. That got me looking around. There were things in dire need of fixing or attention. I called my boyfriend, Teddy and he made his second of many trips over after the incident to help me around the place. He had come during the “sibling event” to remodel the master bath and make it handicapped accessible.
My only child was in Louisiana and, unbeknownst to me at that time, a pawn in the game of sibling manipulation. I was clueless at first. However, after my first year and a half of caregiving, I finally asked my oldest sister, Jana, if she would stay with Dad for a week during October 2002 while I took a week’s vacation with Teddy. To my surprise, without regard to Dad, or me, she immediately called and invited Marna Dearest to join her. They spent the week vacationing and appraising my housekeeping. There was the clear and obvious telltale sign - a single finger mark about an inch long on the undusted knick-knack shelf. They were so busy entertaining themselves that they had no time to change Dad’s sheets even once while I was gone. Marna Dearest, however, found the time to clean out the safe and help herself to a pair of earrings that I had left after the robbery. Then, upon my return, I was also surprised to find that my son had come to visit while I was away. After not seeing him all year, we had only minutes to visit before they had to go. They purposely kept it secret from me. I was stunned!
It gets better … Marna Dearest visits again on the following Thanksgiving Day intentionally arriving after our holiday dinner was finished. This visit was to work on her lakefront property for sale in the Seattle area. The first words out of her mouth were quarrelsome: “This is my house, too.” This visit she was not only verbally abusive towards me in front of my son, ex-boyfriend and Dad, she was physically abusive, also, with no regard to whoever else was present. She started hitting me just like when we were kids. Whoa I threatened to call 911. The final straw came, however, when one day when I picked up the phone and heard her talking to a friend about what a terrible caregiver I was. “Dad is so skinny, sleeps all the time while Glenda does nothing blah, blah, blah.” Why she would malign me to everyone was beyond me. I was beside myself; I started blatantly listening in on her conversations. I was so ignorant about my sibling relationships and felt I needed to figure this out. She slanders me, flies home and leaves me to deal with her lies. Although her pattern is so obvious, the other siblings act oblivious.
After all that, barely a month after the unfortunate Thanksgiving came an even worse Christmas. Dad and I decided to watch Fantasia that Christmas morning. I had never seen the movie before and when I put the video in, there were all sorts of red lines going through it. I could not figure out if it was part of the program or something wrong with the tape. After watching the movie for a short while, Dad began to throw up. Well, because it was Christmas day, I thought maybe his breakfast was too rich or too many sweets. I had no idea what was wrong. Later, when he complained of dizziness, I asked if it might be because of the movie. Here is where a caregiver’s inexperience really bites. Dad was having a TIA (a mini-stroke). By the time I got him into the hospital, he had suffered enough damage to affect his communication skills.
He spent the rest of the year in the hospital. They also discovered he had advanced colon cancer and needed an operation ASAP. On January 2, 2003, they removed most of his colon and pretty much kept him in ICU for a month. It was distressing. They had him tied to the bed and would not take the time to help him to the bathroom. He finally came home under hospice care. That is when the “family stepped in to help.” Jana, being the spokesperson, hired a private nursing firm to help care for Dad. “Family help”, however, omitted any financial responsibility. They instead, put it all on Dad’s credit card. So we are now struggling along and paying that credit card bill on top of all the additional medical and hospitalization bills.
In a way, the stroke was kind of a blessing in disguise. Had Dad not had that stroke, he would have died from colon cancer. One of the hardest things about care giving is the “on the job” training and so I was thankful to have some help during this time. The prescriptions that the doctor sent home for him were not right. They prescribed blood pressure medication that he didn’t need and did not take. Then they prescribed something (can’t remember) else which seriously dehydrated him and so we quit that immediately and put him on IV fluids. That was scary! I was constantly looking in on him and coming home during my15 minute breaks (even though I only had two classes and was never gone over two hours.) I really believe that if he had taken the combination of blood pressure pills and other prescription, it would have killed him. Now, he only takes one aspirin daily and no prescription drugs. Oh, plus during this time, I totaled out the car on top of everything else (my fault).
But I could never put Dad in a home. He has always been a wonderful father and a good person. He was always involved in something, devoting many years to the Historical Society of Federal Way, and he has contributed much to the North Lake community over the years. The property, bought in1944, was for Jane and Dietrick’s dream home, which they built during the 1950’s. We grew up in an idyllic environment. Dad put so much personality into the home. He built a beautiful stained glass wall in the basement at the stairway and entry lights to match. In the downstairs bathroom and the kitchens, he created remarkable mosaic backsplashes, which are works of art. His bedroom also has stained glass windows that catch the morning light. He would not survive anywhere else and deserves to be well cared for in his home.
The funny thing is that I was never close to my father growing up. It was not until my parents separated after 50 years of marriage that Dad and I bonded. The separation was very cruel and difficult to understand. They had traveled many places together; played bridge often with friends, went out dancing and entertained often. No one saw it coming. After that, Dad often came over to visit us and initiate some project to work on. I will always cherish those years.
Anyhow, while Dad was in the hospital, Marna Dearest was enjoying the holidays. She was entertaining friends in her hot tub and, while running to the bathroom, she slipped on the wet tile floor and broke her hip. Just having too much fun, I guess, while I care for Dad on hospice, without a car, and, next thing I know, she sends my son, K, home amidst chaos and with a Wildcat. (It was so thoughtful of Marna to get him a cat.) I was in full swing in the caregiving role and petrified.
Even though I sometimes feel sandwiched between caring for both my father and my son, I am glad K is now home. I realize now that I should never have agreed to let him stay with Marna Dearest. I thought she loved him and would care for him as I would since she had no children of her own. I was wrong! When he went to live with her after the home invasion incident, he got a job at “toy’s ‘r’ us” (after working there in the Seattle area) and went to a local community college. Nevertheless, that was not good enough for her. She was continually critical and making jokes at his expense particularly his hygiene habits - to anybody who would listen. However, since witnessing her hurtful and deceitful character, I suspect that she had her own agenda. I doubt that she nurtured his sang-froid. At this point, he is not interested in working or going back to school. But he is pleasant company and a big help when Dad falls! Yet I will never forget Marna’s calculated phone call one Mother’s day while he was still living with her wondering how to “kill” my kid. She’s unreal! Well, my eyes have been opened to sibling relationships during these caregiving years.
When the other sister, Jana Dearest, came to see Dad (conveniently planned around a quilting convention in Oregon), she wondered why my son is not doing the yard work for his room and board. I replied (with more calm than I felt) that no one person could begin to maintain this yard even if they were so inclined and my son has no landscaping experience to deal with a yard as overgrown as this one. However, maybe once it was under control sure he could mow the lawn. So what is the deal here? We do all the work while they take all the vacations?
The sibling issues have been difficult to deal with on top of everything else and very upsetting. I have not only felt anger and mistrust, but I have been slighted, dazed and traumatized. Care giving is so emotionally challenging in the first place and nobody needs siblings that are disruptive and/or hostile coming around. None of us are perfect but still merit support during our (lack of) lifetime. When the siblings visit, they are of little or no help to anyone or to my delicate state of mind. They strive to make me feel more alienated in this lonely position. I guess I’d thought we had all grown up and found out otherwise. We have a long way to go and, at this point, I don’t care anymore. I just do not want to be around people who are heartless and convoluted
I have found that this job of care giving brings out every emotion imaginable. .Some days are harder than others are and not many are that easy. Even if I do nothing, I worry and fret continuously. I am always aware of what I should be doing to make things better for my father’s life such as wash the kitchen floor, or sew a button on his pajamas. I wonder: When do caregivers get a break? - or - Will I ever fit in the mainstream again?
I know that one day Dad will be gone and I am so afraid of that moment. I want him to stay in this beautiful environment that he loves. And as for me, what happens then? He has been the only one in my family that I could count on for love and acceptance. Even though I am not ready to lose him, I am getting ready. I know that this is important to him. Somehow, I have to recover from the past, live in the present and make plans for the future.
I know it is beneficial to all if we can love one another, and ourselves. Yet the siblings seem to love only themselves. . They do not understand that we benefit through our relationships not because of them. It is not about the house or the wealth we receive, but about taking this point in time to let Dad know he is valued and loved. The caregiving experience has brought me much more in touch with my inner feelings. I feel upset when someone is thoughtless or disrespectful to the ones that love them. I am quick to feel the prick of tears when I feel sad or aware of the inevitable. I am now more appreciative of the people in my life who are supportive and try to let them know how dear they are to me. I believe we’re put on this earth to make it a better place to be one-step at a time.
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