Adventures in Caregiving

I entered 2015 with the idea that I will not make New Year’s resolutions because I didn’t keep mine last year…one of which was to write something, whether it be a note or blog, every day. I’ve since read why New Year’s resolutions don’t really work. We are creatures of habit, we have good intentions, but life often gets in the way, and that certainly proved true last year for me.

On November 24, 2013 my dad came to live with us after being diagnosed with chronic lymphocytic leukemia, a common disease in elderly people. John and I had to do a good bit of talking to convince him to move in with us, but he finally agreed. We had no idea what the future held when Daddy came here. I told him to pack enough clothes for the winter at least, and a few things for spring. He brought mostly winter clothes; I think he had in his mind all along that he would return to North Carolina.

Dad’s treatment began on December 3 with an infusion of rituxan (rituximab?). John and I took turns sitting with him during his first treatment. I didn’t have much vacation left at work, so I needed to be there as much as possible, but I knew it was important to be with Daddy too (more so than being at work). Daddy did fairly well except he began shivering uncontrollably after he got up to go to the bathroom. The nurses were attentive and gave him something to stop the shivering. He was a real trouper and didn’t have any ill side effects other than fatigue from the treatment. We were blessed to have a nurse practitioner from our church who worked at the doctor’s office; she did the initial assessment of my dad and was supportive through the whole time he was undergoing treatment.

Daddy took two chemo pills daily along with the infusions, which were once a month in the beginning. As his body started responding to the treatment, the infusions were cut back to once every two months, and the chlorambucil tablets were reduced to one a day. In his last PET scan, there was no evidence of leukemia, and I was gratified to see that Daddy had gained nearly 20 pounds since coming to Nashville. (He was practically skin and bones when he came here.)

Along the way I began to appreciate my husband more each day. Self-employed, his schedule is a little more flexible than mine, so he assumed most of the responsibility of taking Daddy to doctor visits, which became quite frequent, especially after Daddy complained of back and leg pain, had a scan, and the oncologist determined that his pain had nothing to do with his leukemia. We set up a primary care physician for Dad, and monthly visits ensued.

I would like to say that the year (13 months) Daddy stayed with us were a breeze, but they weren’t. He was a good patient and usually was pleasant to be around (a real blessing). John and I had added responsibilities, like picking up medications and buying certain grocery items for Dad, and I undertook the weekly bath routine. Daddy took care of daily sponge baths, but the all-over bath on Saturdays required assistance. Some weeks I nearly forgot, or I was exhausted by the time Saturday night rolled around.

There were time I had to go into “bossy daughter” mode, and Daddy usually accepted what I said. He got a little depressed from being housebound and isolated. We tried early on taking him to church with us on Sundays, but that proved to be too taxing. Daddy’s back and legs hurt after sitting for a couple of hours, and moving him from our Sunday school class to the sanctuary was quite a feat.

John was my support and reality check throughout the year. Around September he started pushing me to start looking for assisted living. I was reluctant, feeling a bit guilty about leaving my dad’s care (or the brunt of it) up to others, but really the whole situation was starting to take a toll on my mental and physical health. Not to mention the pressures on John’s and my relationship.

Then when my dad took a couple of spills at our house in November 2014, we got serious about looking for assisted living. Daddy had been on the waiting list for assisted living in Canton, NC, where he had lived for the past 20 years, but it looked like we might be waiting a while on that. So the week of Thanksgiving I started looking around Nashville for a place for Dad (using, ironically, a website called A Place for Mom). I had a helpful representative there who immediately called me as soon as I registered on the website, and she suggested some places near our home to check out as possibilities. The search began the week after Thanksgiving, and we soon narrowed it down to two places, one 2 miles from our home and the other about a mile from my workplace.

On December 16 John took my dad to eat at the assisted living place two miles from our home. We were about to decide on that facility for him, but fate (or providence) intervened. As I was going into Google mail to get to my Google documents that day, I saw an e-mail from Silver Bluff Village, the facility where Dad had put down a deposit in November 2013 to get on the waiting list. My heart sank. I thought, “Well, I must tell him about this,” and I knew what he would decide. So that night I asked him carefully about his impressions of the senior living facility he’d visited. He said, “It was okay. The food was pretty good.” Then I asked about the atmosphere of the assisted living place. He said, sounding like an obedient child, “It seemed like a nice place.”

Then I told him about the e-mail I’d received from the admissions director at Silver Bluff. Immediately his eyes lit up, and I knew what the outcome would be. That night I e-mailed her back and told her Daddy was interested in the available apartment.

So on December 26 we left Nashville, spent the weekend in his wife’s house in Canton, and then we moved him to Silver Bluff on December 29. He was so excited to see the mountains of North Carolina once again, and our visit to his church on Sunday showed me what a community he has there. All these women were hugging him, and I thought, “Hey, there’s nothing better for a 92-year-old man than to be hugged by younger women!”

Daddy’s last words to John and me as we left about 5:30 p.m. on Tuesday were, “I’ll miss you and John waiting on me!” He also said he loved us, and he told John for the first time in our 32 years of marriage, “I love you. You’re a good son-in-law.” That is undoubtedly true.

Now the adventure continues…keeping in touch with him and trying not to worry. He is happy with the food at his assisted living. He’s having to walk more (with his trusty walker) to get to the dining room and activities room. He has accepted his new situation with grace and a positive attitude, despite the stress of having to march to someone else’s routine. I am happy that he is back with people his age and that my stepsister and stepbrother are nearby. We will have our challenges, I expect, but for now life is very, very good.

5 thoughts on “Adventures in Caregiving

  1. I admire the love you have for your dad and how you respected his desire to move back to North Carolina. You made the right decision and I’m sure that even with his condition, he is having the best time. This is a very inspiring story about how a family can overcome the challenges of long-term care and caregiving, so we decided to feature it in our blog through the Weekly Digest. You can read it here Thanks!

    • Thanks, Holly. I feel fortunate to have my dad still around at age 92. Living with him for the past 13 months has sensitized me to the lack of control elderly people feel over their lives and destiny. He accepted his physical decline with grace and dignity, even though there were many indignities involved. Felt like the least I could do was respect his wishes regarding where he would live.

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