A Letter from One to Another: The Caregiver Journey

Dear Reader, 

Somewhere along the way, we lost the plot of the movie of life. At one time, families were multigenerational units. They lived close to one another. They accepted that caring for mothers to be, elderly and everyone in between was a family event and a right of passage. With our fast-paced lives, our physical separation, and the growing cost of everything, the plot was changed and with this, our role as caregiver for our elderly. 

I imagine you are reading this letter because your world has been knocked off-kilter.  Perhaps it happened gradually, where you noticed small changes in your elderly loved one along the way and now the small changes have added up to greater need. Or, maybe there was an impactful event that brought about the need for radical change in care.  Regardless of how it happened, it’s a daunting experience to find yourself in a position where the roles have been reversed and you are now the caregiver. To make matters more complicated, the role reversal comes during the busy stage of life where adults are fully in career mode, are raising families of their own and have their own complicated schedules and financial responsibilities. 

Having taken a 10-year journey or the road of dementia with my mom,  I want to share with you what I wish would have been shared with me as I set out to craft our “new normal” way of life. 

Expect the unexpected. With dementia, very little feels stable. There are moments of joy and connection and there are moments of anger and despair. All of these moments comprise the journey for you, your family and your elderly loved one with dementia. 

Double and triple check that all documents to make decisions are up to date, signed and notarized. It’s a difficult place to be when there is building stress and a family’s ability to act is compromised. This does not mean an elderly loved one should not be involved in decisions. Include them in decision making as much as possible. The moments of clarity even for those with dementia seem to come at just the needed moments. 

Find one or two trusted doctors or mental health professionals who can be your guides, your confidants and your support. Establish and build relationships as early as possible and even when the stress level is low.  You will need them-not all the time- but you will need them. 

Establish schedules. Schedules create routines. Our brains love routines. Even though schedules won’t always be upheld, it is good for them to exist both for you and for your elderly loved one. 

Create a system of tracking information and communicating with others. The paperwork, appointments, recommendations, prescriptions and calls can quickly before overwhelming, especially at the beginning. Think about what is best for you and your family to ensure that everyone has the information needed. Does a shared document work? Is a binder with sections to keep track of information needed? Is a group text helpful? Only you and your family can decide what works best. 

There are three more considerations I want to share directly with you the caregiver:

You MUST engage in self-care. Once again, you MUST engage in self-care.  I am not talking about a yearly vacation or a fancy dinner out. I am talking about daily care of your–your mind, body and soul. It is important that when decisions need to be made, you can do so with as clear a mind and conscience as possible.  

Give your family the greatest gift possible by making sure you have paperwork regarding your estate, power of attorney, and any other needed documents created. It’s an uncomfortable topic to think about and much less addressed. However, once it is completed, you have peace of mind.

The role-reversal is heavy AND it affects others in the family whether or not you think it does. Schedules get altered, family and free time gets impacted, emotions overflow, and heaviness can fill the space in the family. Do the best you can and during the journey acknowledge the challenges of caregiving.

Wishing you comfort and compassion on your caregiver journey…