Caregivers come in all shapes and sizes. All professions and personalities. All races and genders. For so many it’s not a job you apply for, desperately waiting for weeks to hear back if you have an interview. It’s a role that you take on when a loved needs you. I have shared my experiences in caregiving for my father when he was sick last year. I have found it therapeutic to put my thoughts and experiences to paper, and share with people who may have been, or are going through, the same thing.
Recently, one of Springible’s dear friends, Patti Clauss, became a caregiver for her mother while she was fighting cancer. Patti’s life changed with her mother’s diagnosis. She went from working as an executive at Williams-Sonoma Inc. searching for executive level talent to searching for answers and solutions for her mother’s life.
Unfortunately, the answers and solutions Patti found couldn’t save her mom. She lost the battle to cancer in April. Patti gave me the opportunity to ask a few questions about her experience, and the ups and downs of being a caregiver. Here’s her story:
Can you tell me about your mother’s illness? When did it begin? What was the diagnosis?
My mother had Pancreatic Cancer. She began having stomach pain in the fall of 2017; at the time she was also having severe hip pain so that was treated versus considering her stomach pain. From what we know her pain only started last year. My mother was amazingly strong so we all wonder now if she was hiding pain prior. We look at pictures now and say, “She was sick then; she had to have had cancer then”. I pray she wasn’t hiding the pain. Looking back, had she began asking about that pain we would most likely have not had our last holiday together or at least it wouldn’t have been a holiday like our family is used to. I see that as a blessing now.
The illness took her from us so quickly. She first went into the hospital January 19, 2018 and passed April 29, 2018.
Did you immediately become a caregiver, or was your mom able to care for herself in the beginning stages? What was the transition like?
I immediately became a caregiver. I was and still am so fortunate that I have strong siblings; a sister who is a nurse and so amazingly knowledgeable and brother who stepped up whenever needed. We were able to share the responsibility. My father took most of the daily work on himself. He became the cook and dishwasher, as he called himself.
I had the most flexibility so I was able to make sure she was ok and settled in the mornings. Anything needed, changing or cleaning, I took care of that. I also took care of their laundry daily. As soon as I would walk in the door I was busy. It was easier for me to do “chores” than just to sit with her. Is that terrible? I recognized it but never said anything. I smiled through all of it and didn’t allow her to see me cry. Late in the day my sister and I would walk down from our homes, which are near each other, to check on them and cry and talk all the way back. I can recall to this day asking my sister if mom would ever be outside and walking around again. Her response: “We didn’t start from a very strong place, so I just don’t know”.
That told me more than I wanted or needed to know. We shared duties of who would go on doctor’s visits with Dad; it was too much on him to do it alone. I fielded calls from friends who all meant well, but we needed to just be a family as we went through this process. Once mom was close to the end and back in the hospital (which would be her last stay in the hospital) we leaned on some of those friends to sit with her.
What was the hardest part about being a caregiver for you?
The absolute hardest part was in the end; the last two weeks of sitting and watching her in the hospital realizing she wasn’t coming home. Whispering in her ear it was ok to go. That we would be fine. Who does that? How did I even do that? The hospice nurse said we needed to so my mom knew it was ok. The hearing is the last to go they say.
When we were in the room together as a family or even just my me and my sister, we had great conversations, shared memories, and laughed… I know she heard that. I remember once thinking “Should we be laughing?”, but yes, in our family we laugh. Humor is what gets us through. Other things that I had in the back of my mind were concerns of my dad being alone, Mom missing Sophie’s (one of my daughters) wedding, and mom not meeting my grandchildren which still really pains me.
The stress on our family caused tension; the stress on my marriage caused tension and fights over nothing. I would be so drained at night that the smallest thing would set me off. Mike (my husband) was so strong throughout it all but I knew he was hurting too but he kept to himself about it unless I wanted to talk. My girls, Evie and Sophie, were amazing, and stronger than I would have ever guessed. They stepped up at every opportunity and were not only there for mom but for me and each other. I was honest with them about everything, which some people didn’t agree with, but that’s how the Clauss family works. They are adults and wanted to know. I have a dear friend of 30 years who had just lost both of her parents, so without bringing back too much of her pain, I would lean on her and ask her questions.
What was a strength you found in yourself when you were a caregiver for your mother?
I go back to just being a task master. I was up for whatever needed to be done from home chores to cleaning and bathing my mother. I even learned how to change some of her bandages which I never thought I would see myself doing. You just do it. I stayed strong and positive around Mom but I never pretended like nothing was wrong. One day she asked me if I thought she was going to make it.
“Patti am I going to make it you think?” she asked.
I looked at her and said, “Mom, I don’t know. What I know is we have to go through some painful stuff first to get on the other side of it.”
I followed it up with a crack about a horrible face mask she used to make my sister and I use in high school. “It’ll burn but be better on the other side, trust me,” she would say. She was right. But I don’t know if I was in my response to her. I just never felt like saying “its fine”.
It took my brother a bit to come around; I don’t think he wanted to accept the seriousness of her illness in the beginning.
I cooked for them often; that is my happy place and Dad needed ideas and relief in that area. In simple terms, I had strength, a strong attitude, and was easy going. I stepped back and took guidance, orders, and instructions from others, which isn’t my nature. I knew my place and where my natural strengths would lend best.
When my dad was sick, it was really hard to see any happiness or bright spots during the time. Now when I look back, I am able to smile over some of the memories we shared together while he was sick. Do you have any of these memories you would like to share?
I do. In the beginning, before she became too sick, my sister and I would give her a shower/bath. She would make fun of us giving her a hard time about her little body. We would surprise wash her hair which always made her laugh; she made a point of always leaving powder prints directly on my “boobs” after we dried and dressed her. We laughed a lot when we were together. We pulled out old albums, went through pictures and laughed. We shared a lot of memories. You could tell when it would hit us all; silence would fall on the room.
Mike went with me to my parent’s home every morning for coffee and to check on them. Every morning he left and yelled, “Bye ma”, and she always yelled “Bye Michael”. He said it every day in the hospital even when she stopped responding. I can still hear her yelling back at him.
I was with her the last day at home when she “mentally left us”. I can still see it. We had flown Sophie in from Utah to be sure she would see her and we were about to leave to look at hotels for her wedding and I looked at Sophie and said, “I can’t go; something isn’t right today”. Sophie and a friend of the girls sat with mom for four hours that afternoon. Mom’s eyes were cloudy, and she couldn’t stay awake. That night she went into the hospital and never came home.
After going through what you have, if you had the chance to give yourself advice on the first day you started to care for your mother, what advice would you give?
Ask for help sooner. Either take time from work or accept offers for help from friends. I tried to be all things and it just became too much. Stay involved with your friends; stay active because you will need your strength. Give yourself permission to not be there all the time. At times, I needed to leave but once home, I always felt like I should go back. Literally every ounce of you is tugged at physically and mentally.
Is there any other information you’d like to share?
It’s just so sad and still unreal to me. I want answers that I know I will never get. Why her? She was so kind, loving, generous, and had such strong faith. I know that doesn’t matter, but it matters to me. I am just blessed to have had such an amazing mother, friend, Nana to my girls, and so many of their friends. She took you in. Everyone. I’m thankful to have had such strong family, friends, and a professional network to help me through. I was open with everyone and that helped me. I should have stepped out of work sooner; by the time I did, I was almost a rag doll. My company supported me 100%, as did my boss. I felt cared for from everyone even if I didn’t let them in.
I grew closer with my sister and my daughters over this. I miss seeing my sister every day, but I don’t miss being in the hospital. My sister deserves so much credit because we leaned on her knowledge every day and I know she felt pressure. She shared with me that she should have known something sooner. No, that’s not true. She was her daughter, not her nurse.
Every morning I wake up and say good morning to my mother. I haven’t stopped crying at night yet. Maybe someday soon.