Building a Care Team or Network: Starting with Friends

Mom and dad lived far from me.  In the winter, they were in their senior community in the south.  In the summer they were in their own home in the north.  Mom had chronic health issues which were followed by her primary care physician.  In the last 15 years of her life she decided she preferred to get her health care in the south.  Driving was easier for dad and she liked the doctor better.  Over time she was getting most of her health care there.  As long as dad was able to drive, this worked out pretty well.  There were only a few instances where she had to get care over the summer.

However, once dad stopped driving, everything changed.  Now she needed someone to take her to see the doctor.  Many neighbors offered to take her.  She got rides from some friends but one neighbor in particular became her primary driver and friend, even though she was much younger than mom (and me for that matter!).  At first, this was very helpful and convenient.  Essie took mom to the doctor or procedures and emailed me the results.  Mom depended on her more and more.  Several times, however, Essie didn’t show up when it was time to go.  Essie liked to sleep in and was not there to take mom to early appointments on several occasions.  Mom called and called her but she wouldn’t answer her phone.  Finally she answered and told mom to take a cab.  Mom was so flustered and upset by then she just called the doctor and cancelled the appointment.  That happened more than once.

Other times, for early appointments, mom accepted the offer of another neighbor who didn’t mind getting up really early to take her to a 7 or 8 AM appointment.  When Essie heard, she became upset that mom had called her other neighbor.  “Now you’re throwing me under the bus?” She asked.  Essie liked being the one to talk to the doctor as well as the one mom depended upon.  She didn’t want to give up any of the power that went with being mom’s friend and driver.  Mom tried to always call Essie except for the very early appointments.  Then she tried not to mention it to Essie so she wouldn’t get upset.  Mom was always afraid of making Essie angry with her because she had become so dependent upon her.

This issue came to a head when I went to the southern home to spend a few months with mom.  I wanted to talk to her doctors because so many things were happening.  And, I planned to spend several months there rather than just 2 weeks as before.  The first week Essie drove both me and mom to see the specialist for the first of about 6 visits.  I asked the specialist some questions about the procedure and pre-tests for it.  The next day Essie told mom she would drive her to the next appointment but she wouldn’t bring me also.  She wanted it to be just her and mom.  Mom told me and wanted me to go along with that plan.

I said NO!  I am here to care for you.  I am your daughter and if something happens I will be the one to care for you.  We will take the senior transport van or a cab if we need to, but we will not let Essie determine whether I can go with you.  It turns out Essie told me (via an angry email) that I made her feel like I was the caseworker and mom was the patient and she (Essie) was nothing.  She didn’t like that feeling.

For the several months I was with mom (away from my home), I coordinated all of mom’s medical appointments (3 different doctors plus multiple lab tests and several procedures).  I arranged for transportation via whatever transportation was available at lowest cost and accompanied mom.  That worked fine while I was there.  I tried to arrange for all of mom’s appointments to take place during the time I was there and for all of her planned procedures to be finished before I left.

That almost worked, but then mom needed follow-up lab work and it didn’t get done because her primary care physician’s office cancelled her appointment when he was out-of-town – not once, but twice.  She stayed at her southern apartment months past her planned return to the north.  Her condition worsened because of lack of follow-up.  I will write more about that later.

I don’t want to say that you shouldn’t rely on friends.  Just don’t ask too much of any one friend, and don’t become dependent upon one.  Some people enjoy helping out.  They care about their friends.  It is nice to have several friends to call upon in an emergency.  However, other friends have different motives.  It is sad to even think that, but it is true.  They may become possessive and bossy.

Now I will suggest what transportation options worked for us.  Through the Senior Office in her county, mom was eligible for a van to take her to appointments for a very minimal fee; but she had to reserve it a week in advance.  She could bring one caregiver with her on the van.  In addition, there were other options available through federal programs.  One is the “DART” which utilizes a regular cab but must be reserved at least a day ahead.  The DART program is subsidized also but costs more than the senior van.  It does allow for a ride when it must be scheduled in a few days rather than a week ahead like the senior van.  There was another option through the Senior Office that was more expensive than the senior van, but not limited to medical appointments.  This van would take you anywhere with just a few days notice.  But again, there were a limited number of vans, and it was first come, first served, so best to reserve in advance if you knew when you needed it.  And in a pinch, like very early in the morning to go for a procedure, we used a cab.  It was expensive, but always an option.

For others in my situation, I would strongly suggest calling the Area Agency on Aging, which is available in every county in every state.  It is funded by federal dollars and can refer you to all kinds of senior services.  Try to find your local agency through Eldersource.  This local agency (sometimes it covers several counties in your state) can refer you to local resources for transportation and so much more.  Try them first before calling anyone else as their referral services are free.

About letstalkaboutfamily

I am a retired and was the primary caregiver for both my parents before they passed. I have children and grandchildren. This blog is an attempt to connect with other caregivers and share ideas and experiences. I hope you will let me know what worked for you if you had an experience similar to mine. The main issues I am going to talk about are elder care, death and dying, assisted living, family relationships and hoarders and hoarding. Other topics will come up as I address the issues and my relationship with other family members.
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