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Myeloma In Paradise: A Trip To The School Of Life And Death

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Published: Dec 10, 2016 4:29 pm

At the end of October, I traveled to Tucson, Arizona to visit and help my ailing parents. It was quite a trip, both literally and in the “trippy” sense of the word. I am still trying to organize the experiences in my mind.

Because of my multiple myeloma, these experiences hold lessons for me that are more immediate than they are for the average Joe. Most of the lessons, I feel, are relevant to other multiple myeloma patients and care­givers as well, so I thought I would share them in this column.

My dad has both terminal cancer and very late-stage multiple scle­ro­sis. He is almost bedridden and totally dependent on my mother, who is his primary caregiver.

When I arrived in Tucson, I found my aunt (mom’s sister) living at my parents’ two-bedroom townhouse be­cause she too had become too sick and confused to be able to live alone. On top of that, my mother was suffering from a bad case of the flu and her own severe arthritis to the point that she had trouble getting out of bed. They had a nurse coming by for a few hours each day, but other than that, my mom was trying to do it all. Feeding, cleaning, toileting, and medicating all three of them was overwhelming.

Lesson For Me: Don’t wait too long to get caregiver help when you need it.

To say that the house was troubled was a huge understatement.

My aunt had recently come home from the hospital after battling a liver ailment, only to suffer a fall two days later. It was then that my mom brought her to their home to keep an eye on her. When I arrived, my aunt was weak, slightly confused, skipping medications, and dehydrated. She agreed that she wasn’t comfortable staying alone at this point, but didn’t know what to do about it.

She felt completely at the mercy of her insurance company, which was denying her coverage to enter a reha­bil­i­ta­tion facility. She wasn’t communicating clearly with them or her doctor, so she felt very trapped. She was contemplating going to a nursing home that Medicare would cover, but she hated both the specific facility they would cover and the general idea of any full service nursing home. Having visited the depressing facility, I couldn’t blame her one bit.

Lesson For Me: Don’t count on health insurance or the government to pay for long-term care if you don’t absolutely have to.

My aunt, while not wealthy, owned her own condo and had a modest amount of money saved up. Once I made that discovery, I was able to find a couple of nice, affordable assisted living communities nearby that had immediate availability and that would be able to give her the appropriate amount of physical assistance that she required. Since she had nobody other than my overwhelmed mother to care for her, these facilities were attractive options.

The facility we chose provided a private one-bedroom apartment, two meals a day, care checks every two to four hours, medication management (something that my aunt desperately needed), transportation to shop­ping and doctors, cleaning, shower assistance, physical therapy, and medical assistance from on-site nurses 24 hours a day. Perfect!

Because my aunt had spent a lifetime living very independently and saving her pennies in order to get what she had, she didn’t really consider these types of assisted living facilities an option. She didn’t want to spend the money.

Lesson For Me: You can’t take it with you! Spend what you need; it’s yours.

I explained to her that with her small retirement income and social security paying her for the remainder of her years, she could afford to stay at this facility for as long as 15 years without selling her condo, and at least another 15 years if she did sell it. Since she was 74 years old, this arrangement seemed like a pretty good bet. She agreed that she couldn’t stay at my parents’ and so would give the facility a try – at least until she felt better.

She moved into her new assisted living apartment exactly one week after I arrived. While she was under­stand­ably unsettled at first, she seemed to be adapting to her new home pretty quickly.

Unfortunately, she never got a chance to get used to it. The day after she moved in, she began to bleed internally and was taken to the hospital, where she passed away less than 24 hours later.

Lesson For Me: No matter how much you think you know how it is all going to end, you have no idea how or when you are actually going to die.

While my aunt had many medical issues that she was dealing with, none of them seemed to be acute enough to cause imminent death.

The death was a huge shock for my mother, who lost her only remaining sibling and her closest lifelong friend. For me, I can’t feel anything but relief for my aunt. She had become a miserable lonely woman who had shut out everybody from her life other than my family. She spent her final years alone in her small apartment, only rarely willing to think about anybody or anything beyond her own illnesses and problems.

Lesson For Me: Show your friends and family how much you love them through your actions and your words. Don’t do it for them. Do it for yourself.

If my aunt had only been able to reciprocate my mother’s love for her, she would have been able to enjoy her final years instead of merely enduring them. My mother longed for her sister to be somebody she could do something with on the rare occasions she could get respite from taking care of my father.

My aunt lived in a community in Tucson with a wealth of opportunities for the elderly. Had she moved to the assisted living facility while healthier, she may have been able to make friends among the many friendly folks there who were in relatively the same position in life. Waiting until she was too sick to enjoy it denied her this possibility.

Too often we choose to focus on the problems of our lives. We see what we have lost instead of all that we have. For my dear Aunt Judy, this attitude robbed her of her golden years.

Lesson For Me: I will make every effort not to let my golden years slip away.

Aloha and carpe diem!

Tom Shell is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is pub­lished once a month. You can view a list of his columns here.

If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .

Photo of Tom Shell, monthly columnist at The Myeloma Beacon.
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8 Comments »

  • Susan said:

    Great advice and column, Tom! And I'm so sorry about the loss of your aunt as well as your dad's declining health. I'm glad you were able to go out there and help.

  • Whudy G said:

    Thanks for sharing.

    My mom has been in nursing home 6 years and she will be 98 in January. It was hard putting her in, but she wouldn't be here today if we hadn't. She takes lots of meds and is on a pain patch. My sister and husband moved in with her 10 years ago to take care of her, and they were disabled and couldn't take care of mom. Now my sister is bedridden, and her husband is in bed with Parkinson's and can't do anything for himself. They have two grandsons living with them, taking care somewhat for them. Medicaid pay them 12 dollars per hour. Mom has Medicare. Medicare pays all bills and meds in a nice nursing home in Virginia.

    I'm 73 and my wife is 72. I was diagnosed with smoldering multiple myeloma 9 month ago and thank God I'm doing great. Wife and I went and bought 2 knacks to ride in nearby river when weather breaks. No use not enjoying life now. 8 day cruise coming up in February to Caribbean. We don't have a promise of tomorrow.

    Thanks again for your column. God Bless.

  • Marianna S said:

    Both my grandmother and my father got so negative / grumpy in their old age that it drove others away from them. They just couldn't see the forest for the trees. My husband died of multiple myeloma in October. All 3 people who gave eulogies spoke of how Tom kept his disease hidden as much as possible and was busy enjoying life. Maybe it's being a bit younger (not elderly), or maybe it's knowing your time is limited, but I see that same spirit spoken about a lot here on the Beacon ... still getting out and doing as much as possible while possible.

  • Nancy D said:

    Thank you for sharing these important lessons. You have helped me greatly.

  • Tom Shell (author) said:

    Aloha Susan and Nancy - Thank you for your support. I'm glad it helped if even a little.

    Marianna - I'm so very sorry for your loss. The spirit of those who read and write for the Beacon is pretty positive. It is one of the reasons I think it is such a good resource.

    Whudy - I am so glad you had a good experience with nursing homes. I didn't mean to sound like they were all horrible places to be avoided. Many are nice and the care level is appropriate for many patients. I love your attitude about getting the knacks, but I have to admit that I have no idea what that is. It doesn't matter. Enjoying your life is our best revenge against the grim reaper!

    Much Aloha
    Tom

  • Janice Kyler said:

    Thank you for teaching us your life lessons. It is important to see the good in the world because the bad just drags you down with it. Merry Christmas! Aloha!

  • Mark Pouley said:

    Thank you Tom. Happy Holidays.

    My dad suffered a number of health issues many years before he passed. He let those issues suck the life out of him. He spent the end of his days dying instead of living. When I was diagnosed, my biggest fear was not dying, but being like my dad – sad and a burden on the family because of the way I would live. In time I realized it was my choice. I swore I wouldn't let this happening.

    Hello from Las Vegas, where I'm spending a mad-capped week with my wife and 3 of my adult children.

  • Nancy Shamanna said:

    Sorry, Tom, that your family went through this sad experience with your aunt. It must have been very helpful for your parents to have you there helping to sort out the situation though.

    Wishing you the best for the holiday season.