My Long-Distance Caregiving Challenges

Date:

May 21, 2021
Reading Time: 6 minutes

Long Distance Caregiving

Editor’s note: This article was written by a 62-year-old woman still working full time and helping her mother who lives 650 miles away in another state. At the end of the article, find seven helpful tips, “What I learned that I hope can help other caregivers.”

Read part 2 of this Caregiver’s story: Long Distance Caregiving (Part 2)

Issues

I live in Fort Worth, Texas. My mother lives in Tuscaloosa, Alabama – around 650 miles away. Tuscaloosa is one of those places where there is no straightforward way to get to it. The closest airport is in Birmingham, about 50 miles away. The Birmingham airport is not a major hub. There are few direct flights; most connect through Atlanta. And, driving takes 12 hours over 2 days each way.

Mother is 93, and still lives on her own and is basically independent. The problem is that over the past several decades she has been very sedentary. Why? To protect her hair. She gets her hair done on Fridays and spends the rest of the week avoiding any activity that may cause her to sweat or mess up her hair. So, decades of inactivity have led to a major loss of core muscle and cardiovascular strength. Over the past 18 months she has gone from being able to walk unassisted to using a walking stick to using two walking sticks to now requiring a rollator.

So much for her lifelong motto of “I’m lazy”. Mother deeply resents what she views as her loss of “balance” and insists that there must be a pill or medical procedure that can fix her. She has had several rounds of physical therapy, none of which has proven satisfactory. In the past year she has also started falling. 

Looking for Help

Over the past six months I have been searching for services and supports in Tuscaloosa that can help her remain in her home, only to find that services and supports commonly available here in North Texas are non-existent in Tuscaloosa. For example, I wanted to a care manager who was familiar with the resources in Tuscaloosa who could help arrange services as needed and generally monitor her situation. Well, turns out that there are no licensed care managers in Tuscaloosa. The only one in the entire state is in Birmingham, and she does not serve clients in Tuscaloosa. I also wanted to find someone who could do in-home personal training with Mother to help her regain some strength.

So, where could I find a Tuscaloosa-based care manager and elder fitness trainer? I called the Area Agency on Aging in Tuscaloosa, only to be told that they only work with people eligible for Medicaid. Mother is not Medicaid eligible – she is well able to afford to pay for needed services and supports.

So, I contacted the University of Alabama, which is in Tuscaloosa and has a Gerontology program. I asked if they have any faculty, students, or graduates who provide elder care management, or if they knew of anyone in the area who provided that service. Nope.

I also contacted the Social Work department to see if they have any faculty, students, or graduates providing elder care management, of if they knew of anyone in the area who provided that service. Nope.

I contacted the chair of the Kinesiology department to see if they have any faculty, students or graduates studying elder fitness who might be able to take Mother on as a private client. Nope, but he referred me to a local geriatrician. She didn’t know anyone, but she referred me to a retired Social Work professor who has an interest in elder care.

So, I reached out to him. His priority these days is working with evangelical churches to serve older adults. Mother is a long-time member of First Baptist Tuscaloosa, which is not the type of church he was talking about. But we continued to talk back and forth, and eventually he remembered that one of the Kinesiology associate professors did elder fitness research and referred me to him.

Success! The young Associate Professor not only conducts research on elder fitness, but he also takes a few private clients on the side! He met with Mother several times for an assessment period and shared with me that he believed he could help her improve her overall strength and fitness. The catch was that she would need to work with him three times / week, and Mother does not like to spend the money she has. This began a period of me pleading with Mother to give it a chance and her insisting that he wasn’t doing anything for her. Finally, in early March she agreed to give it a try . . . .

Moving a parent

Moving a parent, especially one who is frail and has multiple health problems, from one state to another is not always a wise option. Many older adults do not like change of any kind and can create more stress on fragile health. New doctors, community resources, environments, loss of social connections and faith communities, a home where they are comfortable, and loss of all routine can create as many or more problems as it was intended to solve.

Long-Distance Caregiving in the Age of COVID-19

The week before Christmas Mother got to meet her local firefighters when she could not get out of the bathtub. She met them again in January when she crawled underneath her desk to unplug something from the back of her computer – she was on the phone with Dell technical support when this one happened – I’ll bet  that poor tech support person was appalled that he asked her to do that! And, in February she had a third chance to meet her local firefighters after she fell in her living room, and did not have either her phone or emergency alert button with her. Finally, she said she was ready to try assisted living.

I had been in touch with *A Place for Mom and had contact information for three places she could visit and consider. She went with a friend to visit, but then she decided she would really prefer to stay in her home.

So, I begged her to call Visiting Angels or *Comfort Keepers to arrange for some regular in-home assistance. So, she reluctantly agreed to call one of the services on Monday, March 16. That was also the day that she was going to start her in-home personal training with the associate professor from the university.

Then, COVID-19 emerged as a national emergency, and gave her the perfect excuse to not follow through on either plan.  So, here comes my cousin and her daughter to the rescue. My cousin’s daughter is a physical therapist (PT) and lives in Louisiana. Mother provided loans to finance her PT education, and now the young woman is supposed to be repaying the large loan. Recently the PT asked her mother, my cousin, to pay her student loan debt to Mother as her job has ended, and she doesn’t have the income to cover the loan payments.

Now, Mother needs intensive personal training to address fitness issues. So, the PT figured out that she can, with the assistance of her mother, do tele-PT with mother as a way to help pay down her student loan debt! My cousin, who is an RN, is now going over several times / week to assist Mother and her daughter with tele-PT sessions.

Now, I asked Mother if my cousin is wearing a mask when she comes inside the house. No, and they are also not maintaining 6-foot social distancing, nor is my cousin washing her hands when she arrives. My cousin lives with her sister who is a cardiologist and who goes to the hospital and her office daily.

So, we have COVID-19, which is highly contagious, and with which a high percentage of those infected are asymptomatic. We have a nurse who lives with a doctor and both have patient contact for work. And, the nurse is going to Mother’s house and interacting with her without washing her hands when she arrives nor wearing a mask.

I have spent considerable time explaining COVID-19 to Mother and how it can spread from people who don’t know they have it, and why that means she needs to insist my cousin wash her hands and wear a mask. But, she insists that my cousin will do what is necessary, and if she does not see the need for handwashing or mask wearing, she knows best. I cannot control anything happening 650 miles away. 

What I learned that I hope can help other caregivers.

  1. Do you best in finding community resources and supports but recognize when you have done as much as you can. Most area agencies on aging services are not based on income and may be able to help. Call 2-1-1 from anywhere in the US or look online for your community
  2. Ask your family member’s doctor, home health company, church, neighbors, universities, or anyone you can contact about what might be available.
  3. Remember you are looking for solutions and resources to help you family member know their options to make their decision.
  4. Listen to what other family members tell you about what you “should do” but you have to do what you think is best.
  5. You cannot change your mother (or father or anyone else you are helping).
  6. You cannot control anything but your own thinking and emotions.
  7. There is only so much you can do from 650 miles away.

* The writer of this article names service providers, which is not intended to suggest promotion by this online publication.


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