Our Family Came Through When My Caregiver Needed Caregiving

Our Family Came Through When My Caregiver Needed Caregiving

After contracting respiratory syncytial virus (RSV) and having an exacerbation of my idiopathic pulmonary fibrosis, I was homebound. I wasn’t able to walk more than 15 feet and was having some anxiety.

The majority of my anxiety issues pertained to coughing episodes. When I stood up from sitting, my heart rate would skyrocket into the 120s and immediately throw my body into a hacking and coughing frenzy. Unfortunately, these episodes were painful, and I felt like they would never stop. I was on sick leave, and my wife was at work.

Anxiety crept in when I was home by myself. This feeling had never come over me before, but then again, I never had a terminal disease before. Some days I wouldn’t eat anything but snacks because I was terrified of going into a coughing episode. My wife prepared my meals and placed them in the fridge and I only had to put the meals in the microwave. Unfortunately, I was not able to function on some days. The days seemed long waiting for my wife to come home. I was happy and felt safe when she was there. It’s too bad I didn’t tell her these words.

After six weeks of being home by myself and recovering from a bout of RSV, the unthinkable happened. My wife separated her shoulder at work. When I first received the phone call, I was enraged, but of course, there was no action I could possibly take. I could barely walk 15 feet. I knew something was wrong because the person who called to tell me was a former colleague of mine. She usually was jovial when she spoke, but this time she talked to me in a soft and comforting tone. She told me she didn’t want to upset me.

My wife is right-handed, so of course, it was her right shoulder that became separated. She isn’t ambidextrous. She had some complications using her left arm, but she did the best she could. She looked clumsy when trying to do things, but my safety blanket now was home with me for at least the next two months. I was happy in that aspect but also empathized with her pain.

My mother-in-law came over to help. She was, and is, helpful with us, and we’re lucky she lives near us. Now there were two incapacitated individuals in the house. We didn’t want to overwhelm my mother-in-law, so we called my sister who lives in Florida.

My sister came about a week after my wife suffered the injury and stayed about two and a half weeks. My mother-in-law and sister worked out an arrangement: My mother-in-law tended to my wife, while my sister took care of me. This arrangement worked for me, and my wife didn’t mind the extra attention, either. My sister did most of the cooking, which was nice because she cooks like my mother. I have Polish heritage, and I am the only sibling born in the U.S. The others were born in Poland.

My wife was getting stronger and regaining more use of her right arm. By now, my sister had gone back to Florida and my mother-in-law would come over to help out, but not every day. Friends and co-workers made frequent visits, engaging in conversation and dropping off food to make our lives easier. I felt badly that so many people took pity on us, but I was happy my wife was home and my anxiety had subsided. I felt guilty feeling this way, but you can’t change how you feel.

Upon reflection of this time, I think it was like a “Three Stooges” skit. How many other things could go wrong? It was almost comical except for the part about me suffering from a devastating disease and my wife injuring her shoulder. But we persevered and made it through the ordeal.

Having my mother-in-law and sister here was extremely helpful in our recovery and made our lives much easier. The support we received from our friends and family will never be forgotten.

How have others helped you during a difficult time in your journey? Please share in the comments below.

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

 

4 comments

  1. Carolyn says:

    Hi Mark,
    So, I am starting to read all of your articles, and I began with this one, because I am the caregiver. I wanted to see how your wife coped, as I start this journey with my husband. You were blessed to have your family to help. This is where I am getting anxious. My dad passed in 2009. My brothers both passed from cancer in 2016. My mom, broken hearted after her sons’ passing, also passed January 5, 2018. One of my closest friends passed in November of 2018. My sons, live in Manhattan and Boston, and I don’t want them to be responsible for us. My husband’s children have new babies, and we don’t want to bother them. So, it’s just us! I was just getting ready to relax after my mom’s passing, selling her belongings, renovating her home for sale, and now hopefully selling it. Then my husband had back surgery in December, atrial flutter in March and needs an ablation. We learned of his IPF two weeks ago and have an appointment at a large medical center for lung transplant evaluation. So, although I am starting this journey exhausted, I know I have to pull him through this.
    Thanks again for sharing your journey. I have a lot to learn!!

    • Mark Koziol says:

      Hi Carolyn, this is Mark’s wife, Rebecca. I am sorry to hear of your recent loses. Those experiences take a toll on a person. As Mark has stated, we had a lot of support from our family and our friends and co-workers. Looking back I don’t know how I coped sometimes. We tried to keep our daily routines as normal as possible. Mark was still going to work as much as he could, as was I. It was good to keep busy doing other tasks and our jobs kept us very busy. I tried to make sure I got as much sleep as I could and I did a lot of pre-planning whether it be for grocery shopping, cooking, running errands. I was also seeing a psychiatrist. I suffer from anxiety and it was a struggle at times. I also had a confidant at work. I could just go in her office and talk about what I was going through and it felt so good to share with someone, to verbalize how I felt. I can’t say I took very good care of myself and I regret not making that time or having the energy or strength to do better like I do now. However, it helped to get out every once in awhile to do something like going to the movies, hanging out with a girlfriend or go out to dinner. Mark caught RSV which set him back quite a bit. His oxygen needs increased and he was less mobile. He missed almost three months of work. It was stressful because I did not want him to be alone all day while I was at work. I took days off for every appointment he had during the process and I kept up on all the news and information we could find about the disease. Unfortunately while he was recovering from RSV, I got hurt at work with a dislocated shoulder and I ended up being off for 3 months! That is when my anxiety and fears really set in. It is also when our friends and family really came together to help us out. My advice is not to hold it all in and try to do everything alone. Don’t be afraid to ask for help. Talking with someone really helped me as well as doing some activities for myself, don’t let your own health and well being go. Mark still wanted to figure out ways to do things that he enjoyed despite the oxygen and mobility issues. He still cooked, we took a road trip the summer before his transplant, which took a lot of pre-planning. He wrote a column about it. We went out as much as possible to dinner celebrations, graduation parties, weddings. Good luck with this journey. I hope you find these forums and articles helpful.

  2. Carolyn says:

    Dear Rebecca,
    Thanks so much for sharing your journey with your husband. The fact that my parents and brothers have passed, is probably my greatest anxiety. I don’t want to burden our children or friends. Finding a psychiatrist is a good idea and I’ve been looking for one.
    It’s great that Mark tried to stay actively enjoying life. I am trying to encourage Gil to do the same. However, tonight he was too tired to do anything and was in bed by 7:30. I think this is due to low oxygen levels and depression.
    My greatest hurdle will be myself. I know too much about what the future is gong to look like. When I see him failing so quickly, I go into another room and start tearing up. It is breaking my heart. He is a big teddy bear for everyone and I know he is hurting and afraid.
    Thank you so much for your advice and I will work on your suggestions. I look forward to continuing to read the forums and articles.

    • Mark Koziol says:

      Hi Carolyn,
      I just read your reply. Keep encouraging Gil to do things. When he tries something for the first time, it will be easier to do it again. Also, don’t get me wrong, I would go to the bedroom and shed tears as well. I didn’t want to cry in front of him. Is Gil on oxygen? Once Mark was on oxygen we had a great supplier and it was easy to always have it and plan what we needed to leave the house and do something. Try to plan an activity at least once a week that you two can do together. When Mark started the transplant testing process, it was grueling but it gave him hope and a positive attitude that this situation was going to get better. We had wonderful medical care at the Cleveland Clinic which was a great comfort. I can’t stress enough to ask for help and get support around you. Get your children involved, they need to be a part of this and understand the disease and spend time with the two of you. Take care Carolyn.

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