Long Distance Caregiving -- My Story


Long Distance Caregiving -- My Story

airplane-586694_640NOT being in the trenches full time like the rest of you for the next few weeks is causing me some shame that I need to deal with. As a long-distance caregiver it’s my unique issue, I realize that.  I have gained so much strength from being a part of the chat groups on caregiving.com. Now that I have popped out of the rabbit hole back into my “normal” life for a few weeks, I’m not sure where I belong in this wonderful support system.  My next scheduled caregiving trip is the last week of March, and will include more cooking, another follow-up doctor appointment for my dad’s CHF, and general assessment of how the outside supports are working for my folks as they attempt to maintain their independence in their own home where they have lived for over 60 years.  

Of course, it’s entirely possible that my dad will relapse, end up in the ER, acute care, and rehab again and the cycle will repeat itself. I hope and pray that this is not the case, but I know it’s within the realm of possibility. Maintaining faith during this time of suffering for all parties involved feels a little like a test. I have wonderful prayer supports where I live, who  have been incredibly generous with their time and attention to me when I called them at various times, day or night, in a panic with the next bump in the road on my recent three-week sojurn into the caregiving bootcamp black hole.

Looking back and recapping for myself and anyone else who is interested, I had planned TWO brief check-in trips for February (timed around a school break - I’m a music teacher) and I ended up staying straight through from the first trip on February 8 until March 2, which was when I was supposed to fly back from the second trip. This was due to the fact that less than 24 hours after my arrival, dad ended up in the ER with a first time event of CHF -- a disease that I had no familiarity with up until that time.

Dad has been a heart patient since age 52. He had bypass surgery in 1980 and 1991, as well as a heart attack in between. At that time he was a great steward of his own health.  He recovered, retired, started exercising more and watched his diet. He and my mom bought a vacation home in Florida and spent 12 years going back and forth from Pennsylvania to Florida as well as visiting us in the midwest after our daughter was born in 1992 and then in Maine, where we moved in 1996. 

In 2008, my mom had a rapid slide in her health situation -- from August to December that year she had two abscessed teeth, cataract surgery, a mini-stroke, shingles, and then a series of extremely painful compression fractures that came as a result of her osteoporosis that had been worsening since about 2006. My dad, always ready for a project, took on the role of primary caregiver for my mom with incredible zeal. He saw her through three kyphoplasty surgeries in about eight years to repair more and more compression fractures in her back. His own health began to deteriorate a bit in 2013, when he had a run in with bladder cancer, which was removed and did not need further treatment.  

It was his bladder cancer episode that prompted me to do more “check-in” trips that mainly involved putting up lots of food for the freezer so that he wouldn’t have to deal so much with cooking for him and mom. By that time, he had so taken over every aspect of domestic life that my mom barely knew how to run the stove, dishwasher, or washing machine. Dad rarely took a break. Even when my husband and I begged him to get some help, he soldiered on and denied that he was tired.

Until this autumn.

It began with his falling five times between September and Christmas. Then mom complained more and more about his driving. (She doesn’t drive any more). When I saw him at Thanksgiving 2015, it was obvious that he was having mobility and cognitive issues and was very weak and exhausted.  Mom called me to say he had some shortness of breath one Saturday in December but he “refused to let her call anyone.” (Anyone but ME!) 

We saw him over Christmas, and he had started some thyroid medication for low thyroid. Mom thought it was making him more tired and groggy and called his doctor, who said to cut out diazepam. He was only taking a small amount of that, but it did seem to help - -even though he was falling asleep while we opened presents and that was VERY unlike him.

Meanwhile, my mom, who had been “the sick one,” began stepping up her game in the domestic realm, and started doing some basic household tasks that she hadn’t done in eight years since her decline. It was good to see her getting interested again in her home, but disconcerting that it was mainly to take up the slack from Dad’s growing weakness.

Fast forward to February 9,  when at 4 a.m. my mom rode her stair lift to the basement guest room where I was sleeping, and said Dad was short of breath and what did I think she should do.  “Call 911”, I said.  “He won’t like that,” she said. “Then I’ll call Duane” (a neighbor EMT). I did, and he instructed me to dial 911.  

ER, Acute Care, Rehab, Home. Visiting nurse supports and personal care aides. Continuing sodium tests and management for CHF, as well as a nasty cold that was caught in rehab that is making it hard to tell if the CHF is possibly coming back in the form or a cough or not.  Blood work every other day, taken at home by the visiting nurses. 

And now... I sit writing from an airport, traveling 800 miles away from the arena where my folks still struggle and await my and my husband’s next visit in three weeks. We may be talking more about assisted living then. We may not. I do not know. They have been discussing it, somewhat, but are worried about getting rid of all of their things appropriately.  “We should have done this 15 years ago”  they say over and over. But who knew?

Excruciating. Exhausting. Exasperating. Did I mention that I’m the only child?

Just. Breathe. Just. Breathe. Just Breathe.  

Pray. Pray. Pray. Pray. Pray. Pray. 

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You've been through so much already, Vicki. You are in the trenches because of your worries and stresses. It's so hard to be so far away--both when you're with your parents and when you're back home. \r\n\r\nContinue to use our support as often and as much as you need. Staying connected to support means you have support when you need it. And, support is about giving and receiving. We all give on our good days and receive on those tough days. \r\n\r\nI love that you blogged at the airport!!