Taylor-Leigh
Making the big nursing home decision for, and possibly with a loved one is an incredibly difficult conversation to have and choice to make.
If you are there, and struggling with the guilt, the fear, and the thought of relief, then you are not alone.
My story
My family and I recently made the decision to move my grandmother into a long term care facility. It was a conversation that had been in the works for a few years, and the transition period is still lingering in our lives.
A bit of background
After her stroke at the onset of the Covid-19 pandemic, my grandmother required around the clock care and skilled nursing that I learned how to do in the home. In fact, I learned many valuable skills from all of the healthcare professionals on my grandma’s home health team. While I adore my grandmother, caring for her is draining physically as she is bed bound, mentally, and emotionally as I witness and stand by her during this difficult phase of life.
We never could have foreseen the impact that her major stroke would have on the lives of my mother, grandmother, and I. Prior to the incident, the discussion for her care centered around my grandma moving in permanently with my mother. For a few years, I had even suggested that I move in with my grandma in her house to help her in New Jersey. Fortunately, she was in my mom’s house when the stroke happened. If she would have been alone in her house at the time, she probably would not be with us today.
Due to my grandma’s right hemiparesis, the options for post-stroke care were either a skilled nursing facility, or my mom’s house with hired help. Of course, she chose the latter as she used to make it very clear to us that she was not going to live in a “home.”
Lucky for us, my mom happens to work in a healthcare center and has access to resources. In a matter of days, the living room was equipped for my grandmother to live and be cared for. Because she is bedbound, the living room was more ideal than being cooped up in a bedroom all the time.
Where I come in as a young caregiver –
As a performing artist, my industry was almost entirely shut down due to the 2020 pandemic. Hiring help for my grandma when I was close by seemed silly. I couldn’t let my family go through this while I sat idly by. Being out of work with “nothing else to do,”, I stepped up to the plate to care for my grandmother in the house, not knowing at all what that would come to mean.
I will spare you the details from my time as a caregiver, but if you’re keen to read more about my journey, there’s plenty of posts in my Caregiver Chronicles.
Fast forward a little over two years. As a 28 year old engaged to be married, a soon-to-be stepmom, and someone itching to get back out into the world and make something of myself, I had an important decision to make.
Should we move my grandma into a nursing home?
There were lots of things to consider.
First of all, I felt the weight of the decision resting on my shoulders. Not only was I considering my own freedom, but also my mother’s stress, and my grandmother’s wish. My mom was not as able to physically care for my grandma, and I wanted to relieve her of that duty. However, would it cause more stress on my mom as the power of attorney?
Eventually, after taking my grandmother for a tour (getting her out of the house and using transportation was a huge deal in and of itself) and having a few months to decide, we came to the conclusion that it was time for a healthcare facility.
My grandmother was vehemently against it. We danced around the truth and told her that it was only temporary – for her to do physical therapy and get stronger so she could “go home.” She did always beg to go home to New Jersey, which of course was out of the question.
We still spice it up when we talk about how beneficial the facility is. She gets to make friends, is sitting up stronger in her wheelchair, gets to see her daughter who works there, eats meals like in a restaurant, goes to activities, and has healthcare professionals around her for every bump or bruise.
She isn’t completely sold, even as she is presently in there, but compared to being at home, we know it is good for her. At home she was in the same room all day seeing the same people (mostly me). I only transferred her to the wheelchair a few times a week. She was often bored, and definitely more depressed. I felt like there was only so much I could do to solve her problems.
However, I do know that she was more comfortable being with us in the house (no matter how much she hated us sometimes… oftentimes), and we understood her preferences of care. Not to mention the fact that I was tending to her nearly 24/7, could make her practically any food she wanted, and could give her hugs and kisses anytime.
The list of pros and cons for either continuing her care in the house or moving my grandma to a nursing home was long.
Relating to others’ experiences
I asked people I knew about their experiences having a loved one in a nursing home. The consensus was that the choice was and is a difficult one for everyone’s unique situation. All of them said that I have done way more than any normal granddaughter would have done the past two years, and that I deserve to live my own life. They said that my mom and I can advocate for her care, and that I can visit her as much as I want (I have already been going every day). They said that we can go back to being my grandma’s family members, instead of her caregivers. Plus, we would be giving my grandma the care that she needs and deserves. After all, as told by social workers, therapists, and healthcare workers, that’s what these facilities are for.
In my next post I plan to write about how I felt like a mom dropping off her child on their first day of preschool. But for this one, I’ll stick to simply making the decision, as it is a big one.
I won’t go into detail about choosing facilities, but there are social workers and other professionals who can help with guiding loved ones through the process, as well as internet guides. In fact, more caregivers are being vocal on social media and I have seen tons of great information on Instagram, particularly about dementia care.
Some factors to consider when choosing a facility for your loved one is location, quality (and type) of care they provide, and financial ability. Getting care through Medicaid is also available. If your loved one is fairly mobile, you can take them out to eat or something, and then bring them back.
When my parental grandfather was in a memory care center, my father had a weekly routine of places he would take his dad too, and it was really special to him, and me too when I would partake. If there weren’t so many hoops to jump through to get my grandma out and about, I would be doing something similar. But for now, I will keep on visiting her and getting all the hugs and handholds that I can.
A big transition
Going from seeing my grandma all the time every day to seeing her for an hour or two at different times has been quite a change.
While I do miss her, I feel that I am able to breathe a sigh of relief. I am able to make my own schedule and leave the house when I choose, and my mind is becoming clearer about having a future. As a caregiver, the unknown lies in how long we have in our role, resulting (for me at least) in not much hope for a future of my own. It has severely affected my mental health, and now I finally feel the grasp of my hopelessness easing up.
Prioritizing my mother and I’s health was a huge factor in making our nursing home decision. I still have mental health issues I’m grappling with now through this transition, one of them being insomnia due to my anxious withdrawal from my grandmother. Caregiving forced me to look deep inside myself, and for that I owe a lot of self-growth to.
A challenge I did not foresee is finding times to go visit my grandma around her schedule full of meals, personal care, activities, and other health appointments. As I am currently in a transition and not working yet, I am able to be flexible. While visitors are only able to be in certain areas with their resident due to Covid, I’m glad that I am able to visit her in person at all. When she was in rehab after her stroke in 2020, we had to do a lot of window visits.
Needless to say, I miss her an awful lot, as does her cat, who my grandma thinks is a dog sometimes, and that’s okay.
My next goal is to try to get her cat into a carrier to bring to my grandma for a visit. That should be interesting!
Everyone’s situation and relationship to their loved one going through this transition is different. Luckily, we have resources (like this blog ;)) to be able to find solace in one another.
By even agonizing over this decision, know that you are doing the right thing of mindfully weighing all your options. I truly feel like the conversation for elder care ought to be had earlier in life so there is less of a stigma attached to it. Aging is normal, and considering the state of our world today, to grow old is a blessing. Take care of your loved ones or get the help you need through a care facility, but most importantly, take care of yourselves.
P.S. I still, and will always consider myself to be a caregiver. I have been forever changed by my experience and the life of my grandmother.
I’m no expert on caregiving, but I have had my own unique journey as a millennial caregiver and doing it as consciously as I can. I’m Taylor-Leigh, and I like to write about my journey through life and all my passions along the way, mainly dancing, plant-based eating, and intentional living.