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From Passive to Active Cargiver for my Grandmother with Parkinson's

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Caring and Coping - From Passive to Active Caregiver

Dr. Maria De Leon, MDSummary: Going from a passive caregiver role to being an active, primary caregiver on the forefront can happen suddenly and unexpectedly. Dr. De Leon recounts how she became an active, immediate primary caregiver for her Grandmother with Parkinson's almost immediately. Based on experience, Dr. De Leon offers her suggestions, or factors to consider as to why home care may NOT be an option for your loved one.

Author: exclusively for Assisted Living Directory.

Dr. De Leon is a contributor for Assisted Living Directory


During the past week, I spent several days at a local nursing home visiting friends who ended up being admitted due to unexpected and unforeseen health changes.

Walking the halls listening to laughter, singing, crying, moaning, screaming, piano playing and voices over the intercom reminded me of how life always exists in a balance of joy and sadness. It was also a reminder of the frailty of our lives; how within a blink of an eye life can unravel with everything we cherish come tumbling down. One minute you are making summer plans, wondering which beach would be the nicest to spend some R&R with family. The next thing you know, you are wondering what's wrong with dad and can I take care of him at home?

The same thing happened to me a few years ago when my life went topsy -turvy a week later after my grandfather passed away.Maria's grandmother with Parkinson's and her quilt

Just like my friends and their families lives changed suddenly within the last week, so did mine. I like them thought I had plenty of time to spend with my grandmother and help manage her Parkinson's disease so that she could become more independent and enjoy her twilight years with her grand kids and great-grand-kinds.

All at once my life became a whirl wind changing me from a passive caregiver to an active forefront partner in the care of my grandmother.

I, like my friends had to decide what the best care for her was and could I do it at home or would I have to place her in a nursing home? After all I had a full practice and a 3 year old to care for as well. After much deliberation and support from my husband we opted to keep her home under hospice. However, the decision did not come lightly nor did the care.

Caring for a loved one who is chronically ill and providing for all of their needs can be exhausting and very stressful even in the strongest of marriages and individuals. After several months of care I, too, need a break and placed my grandma in Respite care in a nursing home for a week. Although, I ended up spending most of that week visiting her at nursing home to avoid her getting agitated, confused, and overly medicated; not having people at my house 24/7 provided me with a much needed mental break so that I could continue being her caregiver.

So, now I feel both a sense of sense of duty and responsibility to be able to go to my local nursing home and spend time with my friends and their families to provide moral support if nothing else.

For I know how stressful being a caregiver can be especially when facing life's uncertainties. Yet, despite the suffering seen throughout the corridors, I have witnessed and felt personality in the past and now the warmth of human kindness all around.

The visits have reminded me of the love, sacrifice, dedication, commitment and discipline required to care for chronically ill patients.

It is the unending devotion and power of never giving up in the face of adversity that flows out of the selfless caregivers, and family members tending to the nursing home patients along with the commitment from the health staff to help ease the burden of pain, suffering and stress of seeing a loved one decline that make facing terminal illnesses or chronic disease bearable.

I was happy to be a part of this if even in a tiny insignificant way to remind others they too can count on and turn to these institutions and professionals at a moment’s notice for assistance and guidance to help us and our loved ones in a time of crises get through the tough times and with luck get them and us back on our feet while returning some sanity and normalcy into our lives.

When dealing with my grandmother’s end stage terminal cancer, it was the hospice, home health, and nursing home staff professionalism and upbeat personalities which kept me going even through the dark days.

So next time you are faced with a decision of whether you should place your loved one in a nursing home or assisted living consider these factors of why home care may NOT be an option

1) Family limitations (children at home that require attention, time constraints, money issues)

2) Caregiver's physical and emotional state may already be weakened or completely depleted because of personal illness since a big number of caregivers are also patients and/ or have children to tend to (sandwich generation).

3) Patients illness or condition may require level of care out of the expertise of caregiver

4) Financial constraints (caregiver must maintain outside employment to provide for loved one’s care )

5) Layout of home may be unsuitable for patient- need special equipment for instance that may not fit in the home

Remember, whether you opt to keep your loved one in a nursing home or at home is not really as important as deciding to be there as a caregiver for this is the hardest job anyone can do but "if you find it in your heart to care for somebody else, you will have succeeded" in life as Maya Angelou would have firmly believed.

Copyright © 2014 by

Article by Dr. Maria De Leon, MD exclusively for Assisted Living Directory

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