How Caregiving Changed Me: My Reflection for National Family Caregivers Month

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It is not a secret that I am a caregiver for my Grandmother, “Big V;” I have written about my experiences as a then late-20s something caregiver in 2013.  However, 2015 marked drastic changes in not only my Grandmother’s health, but also greatly shaped my life in the process.  In observance of National Family Caregivers Month, which is commemorated in November, I wanted to share what has occurred, and how I have coped and grown during such an emotional experience.

The Subtle Shifts I Noticed

In mid-2014, I began to notice that my Grandmother was not acting as her usual self.  Though she had early stage Alzheimer’s at that time, she still attempted to do what she could for herself, such as cleaning, organizing her personal business that she could handle independently (mainly her money), cooking, bathing, watching TV, and having small conversations.  By that summer, I noticed that she either took much longer to complete certain tasks like counting money and arranging them to be placed in cards, or had no interest in doing her activities of daily living (ADLs) like cooking, eating, or bathing.  I also saw that she slept more during the day, and if I attempted to try to get her up, her agitation levels were beyond normal; though my Grandma was a strong-willed woman, she was never hard to coax into doing tasks that she knew was necessary to be finished.  

The Straw That Broke the Camel’s Back

I relayed the changes to my Aunt, who is also involved in my Grandmother’s care, and told her to share the changes with her primary care doctor.  Her doctor responded by giving us medication to control the mood changes, along with addressing the health concerns we had about some non-related Alzheimer’s issues that were present as well.  The response acted as a bandage – they helped for a few weeks, but the subtle changes were still very much problematic.  

The pivotal moment came on Martin Luther King’s Day in January 2015, when my Grandmother rolled out of the bed, and could not get herself up.  At this point, she was incredibly weak and dehydrated, and had to be taken to the emergency room.  She stayed in the hospital for three days and two nights, and was released to go home when the dehydration was controlled by her receiving fluids.  Her unwillingness and lack of motivation to move about and eat were contributors to this frail condition, and it also showed us that Grandmother no longer had the ability to care for herself independently or live on her own (if I were to move out).  

Calling in the Reinforcements – Home Health Services

When my Grandmother came home, we were connected with the hospital’s home health agency.  It was the medical and helping professionals that helped us to realize that Grandmother’s Alzheimer’s had progressed to the middle stage, and this progression accounted for the behavioral, mood, and motivation shifts that were now happening with her.  

My Grandmother received a great amount of services during her time under Home Health care – nursing, social work, occupational therapy, physical therapy, and a home health CNA.  Each of these services provided assistance either to her; us, the caregivers; or both.  One of the main benefits I experienced as a caregiver was assistance from the home health social worker, who found resources for Grandma that we were able to utilize such as respite funding that afforded her to attend daycare three days a week, as well as signing her up to receive Medicaid benefits.  Regardless of the direct or indirect impact the assistance given to my Grandmother had towards her, they all opened the door for her to begin receiving the level of care she needed and deserved.  

My Grandmother’s Current Health Condition & Receiving Hospice Care  

Grandma's 86th Birthday Collage

Photo collage I made in August for Grandma’s 86th birthday.

Ten months later, my Grandmother is on an ebb and flow with her condition – she has good days and bad days, and thankfully, there are more good ones than difficult ones.  Due to the number of falls she experienced since January (mainly from trying to walk unassisted when ordered not to by the home health nursing staff), she is no longer walking on her own.  She sits in a transfer wheelchair, and must be helped to transfer to the bed, commode, and other sitting areas.  Not being able to walk has been the hardest on her during her more “lucid” days; the frustration of not understanding why her body does not work the way it should upsets her.  

Her appetite has waxed and waned throughout the year, but for now, she eats pretty well and asks for food and snacks when hungry.  We have had to adjust the dosage of her mood medication when we saw that they were no longer effective in calming down her anxious or cantankerous moments; not having her calm made it challenging for me to help her, and also made me fearful of a possible lash out if she became unusually agitated.  She also underwent treatment intervention for other health issues that were spotted from the more in-depth care received.  

The two biggest positive changes to report are her attending daycare since March, and us transitioning from home health care to hospice care.  Going to daycare three times a week provides her with a social outlet; though she may not be as engaged on certain days as others, it allows her to be among her peers and not at home 24/7.  It also allows me to have a break for a few hours out of the week in caregiving, which has been an unexpected bonus.  

Though home health was a tremendous support system during the start of this process, we needed something that will be long-term for this journey.  Hospice seems to be that solution at this stage of my Grandmother’s health.  Under hospice care, we will receive nursing, CNA, and social work services; along with chaplain support, which is a new care resource that will be meaningful to us all since we are a spiritual family.  The hospice care team we have appears to be a great fit for us, and will continue to take some of the heavy lifting we have been doing off our shoulders.  My Grandmother is responding well with the changes, which is the most important factor to us – if she is cared for and content, then it makes our jobs easier and put our hearts and minds at ease.  

How I Have Changed, Coped, & Strengthened This Year of Caregiving

To say that this year was an emotional rollercoaster would be an understatement.  

I had to adjust to so many things at once, with very little breathing room.  The main one was coping with the realities of my Grandmother’s progression with Alzheimer’s, and the mental and physical limitations that unfolded over this year.  Seeing my Grandmother on this journey has been emotionally taxing because of the role reversal – she raised and took care of me, and now I am caring for her.  The beginning of this journey was especially difficult because I did not know how she would end up; now that we have reached somewhat of a “plateau” of where she is, having some form of normalcy has calmed my uncertainties and fears.  

I also had to adjust to the new living arrangements here, particularly dealing with my Aunt every day.  It has not been easy to get along with my Aunt; she is a good person, but at times, not the most mature communicator when the time calls for it.  I have had to learn to not take on any of her negative energy or meanness; her issues are hers to handle, and are not mine to deal with.  It has definitely affected the way I view and understand her, for better and for worse.  How I feel about it now is summed up like this:  “it is what it is.”  Basically, this is my home; I am going to feel comfortable in my quarters; I am not going to subject myself to others’ dysfunctions; and will continue doing what I can do for myself and for my Grandmother.  Learning to ignore inappropriate behavior and responses when unnecessary chaos and aggravation are created has been pivotal lessons during this experience.  

Realizing that though I do assist in my Grandmother’s care, my Grandmother is not my sole priority in life.  She has two daughters who are perfectly capable of caring for her – her well-being does not fall solely on my shoulders to bear.  This year, I have learned to release the guilt that I felt were placed on me because of the goals I have in life, and to begin making moves to achieve them.  Now that my Grandmother is in a more “stable” place with her health status, I have begun to focus more on my needs for the future – going back to school and moving out.  I reached this point with the support of my dear friends, two in particular who have been cherished uplifters and encouragers for me this year.  Without their wisdom, guidance, and constant reminders that “I have to do what is best for me and live my life,” I would still be struggling to reach this dire level of self-realization.  Being told such affirmative messages during the many trying times that occurred this year were key for my emotional and mental well-being and strength.  My support system gave me strength when I was running on empty on my emotions meter, and I am forever thankful for those kind words that kept me focused and not get lost in the commotion of changes.

Final Thoughts

I hope that sharing my story for National Family Caregivers Month will uplift someone who is enduring a similar plight I underwent this year.  Being a caregiver is probably the hardest thing I have ever done in my 30 years, but the good days Grandma has makes the troubling ones not so hard.  

If you are a caregiver, I hope that you have a support system in place because this is not something you can go at it alone – you need others to lean on when you have nothing else to give.  We need to do more to bestow the crucial support and services to the millions of caregivers in our country; we cannot afford to fail them or the loved ones they are selflessly caring for each day.  

(Featured headlining image:  Courtesy of ShutterStock.)

About Vilissa Thompson, LMSW

Vilissa is the Founder & CEO of Ramp Your Voice!, an organization she created to establish herself as a Disability Rights Consultant & Advocate. Ramp Your Voice! is a prime example of how macro-minded Vilissa truly is, and her determination to leave a giant "tire track mark" on the world.

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