Palliative Care is a newly discovered resource that is supporting my family’s health.

The goal of palliative care is to help people with serious illnesses feel better. It prevents or treats symptoms and side effects of disease and treatment. Palliative care also treats emotional, social, practical, and spiritual problems that illnesses can bring up. When the person feels better in these areas, they have an improved quality of life.

Palliative care can be given at the same time as treatments meant to cure or treat the disease. Palliative care is not hospice.

Kent, Michael and Chad are receiving Palliative Care through Quality Home Health. Palliative Care is proving to be a worthwhile program that takes pressure off of me for monitoring my family. Doctors visit my family members once a month and they have access to a social worker whenever they feel the need. We are trying to get Andrea on Palliative Care but she has a different insurance (Aetna) than the rest of the family so she isn’t able to use Quality.

Palliative Care is a new resource and Andrea’s insurance company doesn’t even know what it is. I have been relentless at trying to find someone at her insurance company that can help find a company that is in-network. Even her case manager at Aetna doesn’t know how to figure this out. 

That left it to me to figure out. I started calling local Palliative Care companies to find someone that works with Aetna. It probably took a month to find a company that worked with her insurance and it was a very frustrating process. I finally found Solstice who is now servicing Andrea with Palliative Care.

The intake person at Solstice is Sarah. Of course Solstice and Sarah don’t know anything about Myotonic Dystrophy (DM) and it is a very confusing and complicated process to teach about DM and its multiple effects. An example is our experience with Sarah. I’m sure that Sarah is a valuable employee and her list of credentials is extensive. But when dealing with Andrea’s DM there are obvious failings. 

When a patient such as Andrea is considered home-bound they qualify for a lot more services. An embarrassing amount of times I have explained to Sarah that Andrea is home-bound. The definition of home-bound is someone that does occasionally leave their home but the experience of leaving the home are exhausting and the individual usually needs someone to accompany her. 

When Andrea leaves home it takes everything out of her and it usually takes the rest of the day to recover. Plus, when Andrea needs to go somewhere either I drive her or her partner Mark drives her. These are the situations that make Andrea home-bound. 

After multiple explanations of Andrea’s status to Sarah she still says “If Andrea were home-bound we could get her more services. Sarah just doesn’t seem to get that Andrea is home-bound and it’s probably because Andrea presents well when she is interacting with Sarah. Sarah and most other people are not aware of the work that goes on behind the scene to get Andrea up and functioning so that she can interact with others. I don’t know how to make it clearer that Andrea is home-bound.

Last week I drove Andrea to an appointment with Sarah for a MOCA cognitive assessment. Of course, Andrea tested well. After the results of the assessment were calculated Sarah turned to me (within earshot of Andrea) and said “Andrea is doing well. But now we will be able to chart her decline over the next few months.”

Who talks about the imminent decline of a patient in front of the patient? What nerve and callousness on Sarah’s part. Plus, Andrea won’t decline that rapidly. DM doesn’t work that way. Typically there is some decline but then the patient plateaus for a long time period. I was blown away by the comments that were made in front of Andrea. Andrea and I talked about it after and Andrea was eventually able to shrug it off because it is so common for professionals to be so clueless about DM that Andrea feels that she has no choice but to move on.

These are some of the examples of the complicated process of advocating for someone with DM.