The Ribbon of Road Ahead

November is Care Partners Month: What about those who need a care partner but don’t have one?

Carol Clupny   October 30, 2023

November is Care Partners Month.  This term is used across various diseases, not just my least favorite disease, Parkinsons.

In the 5 years since I first heard  “care partner” (previously called carer, caregiver, or caretaker) I have seen an increasing emphasis on support of these individuals,  and rightly so. I see it in my own home every day. Through the nearly 16 years of my living with Parkinsons, my husband has taken on responsibility for the care of our house, our pets, our finances, and now my physical care, as there is hardly a  thing, I can do for myself.  Sometimes he is just darned tired of all the “stuff”.

He continues faithfully providing care and I  do have it good.  He has stood by me for 41 years.  His mantra “For better or worse, in sickness and in health” is quick off his lips.

Yet not everyone has my “Charlie” or Nan’s “Doug” or Cidney’s ”Pat”.  I am reminded of this when I get together with my Parkinsons women friends.  Throwing my two cents worth to someone’s problem a retort comes back.  “But you have Charlie”.  Yes, I am very fortunate, but this does not disqualify me from suffering from the disease.

Among members of my circle of PD friends are those who lost significant others as carers in their lives due to death, diagnosis, or desertion.  There are those who may not have had significant others at the time of diagnosis.

Does a care partner need to be a spouse or a family member: including parents, children, siblings, and close friends? What about those who do not have live-in care partners?

 I acknowledge the challenges experienced by these women (and men) who live alone or share their home with non-helping housemates; For those who care for children or parents,  who have not been able to build a nest egg from single wage income,  who cannot find or get to a decent movement disorder specialist,  who for whatever reason are denied social security disability. I hear your pain and sometimes it brings me guilt for having conquered these obstacles.

There are many who face the symptoms of Parkinson’s on their own and live fulfilling lives.  And others who suffer through emotional and physical challenges in their world due to the loneliness of this diagnosis.

A quick internet search showed more recent and plentiful information for care partners and not much for those living alone.  Those who live alone can find resources such as a well written article by Julie Fitzgerald on the Davis Phinney website. Julie remarks: Webinars and resources made for people with care partners make me feel even more alone. Another article by the staff of ParkinsonsDisease.net reinforces Julie’s ideas for living well alone. A panel discussion on Davis Phinney’s YouTube channel has people giving their life experiences of living alone. These resources cover subjects such as keeping connected, staying informed, exercising,  safety in the home, legal matters, and much more.

I call upon our foundations and agencies to look further into the needs of the “People Without Care Partners” group.   These people deserve focus and support in more and different ways than those who have care partners in place.