The Forever Caregiver

by | Oct 20, 2023 | Caregiver Reflections | 0 comments

For months, I have been conflicted about whether or not to put these thoughts on a page. I know people will make a judgment about me based on a piece of writing.  And that terrifies me. Also, I know I am not the only mom that feels this way, so I decided it was past time to say it. 

I love my son with all of my heart. And the thought of being his caregiver forever haunts me. It makes me cry to say that sentence and actually put it in black and white.  I hear other caregivers say how honored they are to be the caregiver and plan to do it as long as they live. 

I want to feel that way. 

I am grateful beyond measure for my son.  It is a miracle of miracles he is alive today.  I am honored to be his mom and his caregiver.  After 21 years of being the primary caregiver, I am tired. Physically, I am tired.  Emotionally, I am tired.  When I wonder how long I will be the primary caregiver it makes me even more stressed. The thought of doing this forever feels daunting.  Then sheer panic hits – what if I can’t do this forever? What if he outlives me? Of course we want our children to outlive us, but what happens when they actually DO? Who takes care of him? Will he be abused? Will his siblings be able to find someone to take good care of him? What if it’s a bad situation? He is nonverbal.  The guilt at the THOUGHT of him outliving me and not knowing who will be his long-term caregiver is enough to have a days-long panic attack. For which I don’t have time. 

Recently, we came to the decision that we will not be his forever caregivers. Not exactly anyway.  We know that while we are important to him, so are other relationships. He has also made it clear along the way that he too wants more independence from us. He does not always want his mom by his side. Our case managers and mentors have clearly explained that moving him and giving him more independence from us is a gift for him. That he deserves to feel settled with other caregivers while we are still alive and able to oversee things. To still be able to spend time with him, to help make the transition while it’s not an emergency.  So, we have set a semi-timeline.  “A few more years.” He will stay in our home “a few more years.”  Knowing the day will come but it is not tomorrow is allowing us time to figure out the details. To find the right caregivers. The right location. The right set up. While it is a huge responsibility, it is giving me peace knowing there are options at this point and we are not making a decision out of desperation. 

When I made the shift and changed forever to “a few more years” something happened.  My body isn’t so fraught with tension. When he is frustrated and I am unable to understand why or what I can do, my patience has returned. Every challenge doesn’t feel so big anymore. I spend more time observing and noticing the brilliant way his mind works.  Isn’t it wild that somehow just knowing this isn’t forever, makes me love and appreciate the days I get to?  For now and the next “few more years” I will savor the moments and do my best to remember that this is my life’s biggest honor. 

This post was written by Kelly Roberts.


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