October 7, 2013

A Caregiver's Story by guest blogger Tom

Tom and I worked together when I lived in Michigan. He was sweet enough to reach out to me during my treatment with a beautiful letter and gifts to make my chemo treatments more tolerable. He shared some of Nancy's story with me and I thought it would be great for Tom to share his experience with everyone as I know it could benefit so many caregivers out there! 

Thank you, Tom, for sharing your story with us all! You're truly brave and generous for doing so! 
xo ~ Linda


At 2:30 AM on December 5th, 2011, my life changed forever. That was the morning my wife and best friend, Nancy died. As her principle care giver the previous year, I can relate somewhat to what others in this position may be going through. What follows is some of what I learned during her last year of life.
Nancy and Tom 

       First, let me tell you a little about Nancy. She was 65 years old when she died. She had a job she loved with Spectrum Health. She planned to work maybe one more year, and then we would really begin retirement together. We were married for just over 42 years. During that time we raised three handsome, intelligent boys who now have families of their own, and have blessed us with seven beautiful and healthy grandchildren. Now I knowNancy loved me very much. And I hope she knew I loved her with all my heart. But the love she had for those grandchildren is hard to put into words. Between 1999 and 2011 we took quite a few vacations and trips; but if it did not involve seeing a grandchild (or two or three), it wasn’t going to happen. She needed a “grandchild fix” on a regular basis.

       Her cancer was called CTCL—Cutaneous T-Cell Lymphoma, a rare form of skin cancer that resulted in making her life very difficult. The major problem was a constant itching over a large portion of her body. The last year of her life was excruciatingly painful. But in spite of what she was going through, she maintained a positive attitude. She never stopped fighting, and right to the end, she thought she would beat this terrible disease.

       Now for my part as a care giver, there was never any other option for me but to become that person, no matter how inexperienced I was. Fortunately I had retired in 2008, and was able to take this on as a full time job. I suppose your ability to care for someone is dependent on the severity of the disease. But I learned early the most important thing was to be there for her. It was that simple and yet that difficult all at the same time. And whether she was in the hospital or home, I still needed to be there. Sleep was a precious commodity. Often it didn’t happen at night, so any time I could get her to rest, I felt we were making progress. Her nutritional needs were reduced as the disease progressed. At one point due to radiation, she had a hard time swallowing. She was existing on Ensure and protein shakes that I made for her. But in the last ten months of her life, she lost more than 60 pounds.

       One characteristic of a good care giver is the ability to listen. She didn’t talk as much as she normally did, but when she did I thought it was very important to listen. We never talked about her funeral. That would be admitting defeat. We did talk about her condition, her doctors, her feelings and her fears. And of course we talked about her beloved grandchildren. At times she wanted to watch television. We did that together. Although in the evening, we realized our programming tastes differed and she would watch what she wanted on her set and I would watch a sporting event on mine. And that was okay for both of us. My point here is that at times you are going to need a break from the care giving routine. I may be only a few minutes or a couple of hours; or it may be a longer. It’s all right to rely on other people that want to help. One friend came on a semi-regular basis to do their nails together. You might feel like hell, but you should look good while you’re going through that as much as possible. But for her own reasons, Nancynever wanted to wear a wig. Two days before her first chemo treatment, she decided she wanted to have her head shaved. We went to Great Clips together and both had our heads shaved. One way of letting her know we were in this together.

       The best advice I can give care givers is to be there day or night, whenever you are needed. Stay positive as you listen to what your loved one needs. Are there going to be bad days? Count on it. Are you going to doubt your ability to do the job? Most likely (especially when it comes to keeping all the medications straight). But you can do it. You take it one day or one night at a time and do your best. That is all anyone can ask of you. And even when your patient gets down, you being there will make all the difference. I can honestly say that this disease brought us closer together. We above all tried to keep a sense of humor. I remember saying to her (and this was about the closest I got to not being positive): “What am I going to do without you?” Her reply was: “Oh, you will probably meet some young, sexy ‘chick’ to take care of you.”  And she just laughed when I asked her if she wanted to know who that person was going to be (like I had already picked somebody out for that role).

       If a brief summary would help, this is what I would say:

1.) Be there  Be at their bedside, at the doctor’s office, on any trips outside the home, wherever you are needed and with a positive attitude.

2.) Listen When the patient talks, when the nurse (oncology nurses are amazing) or doctor speaks, even when you get too many questions or suggestions from well-meaning friends. One other note—it sometimes helps when in a meeting with professionals to have a third set of ears, a son or daughter or a trusted friend, maybe one who is good at taking notes. Also listen to your “gut” reaction—if it doesn’t sound right, it probably isn’t.

3.) Take care of yourself   If you get feeling down or ill, you won’t be much help. Be willing to accept assistance and take a break from what has become your job. You will be better at it when you return.

4.) Document  Keep a calendar or a type of record of office visits, medications, changes with the patient’s routine, even take pictures for a record of changes, anything you think is significant. Remember that you are in charge of your health care. The doctor works for you. You need to have confidence in him or her, and if you don’t, then change doctors.

5.) Maintain a sense of humor whenever possible. Bad days can be eased by some humor. Treasure the good days; make a note of them and why they were good. A day without a smile is a long day.

       I hope this may have helped at least one person in this care giving position. If it has, that makes the effort it took to write this all worth it. Thank you, Linda, for asking me to contribute. You are in my thoughts and prayers.


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