Missing Person & Ambiguous Loss
Are you still considered a missing person if no one has noticed you have disappeared? I last visited this space on February 16th with some fun looks from Avara that I was thrilled to be showing off. We were gearing. up for dance competition season, my future son-in-law had come to ask permission to marry our daughter and the calendar was filling up with so many senior year celebrations and I was excited for them all! And then I became a missing person.
On the morning of February 29th, my mom was taken to the ER after falling and busting her head open and my world just shifted. After a cat scan it was determined she had a brain bleed and I immediately flashed back to 2019 when my Mamaw was lifeflighted to Houston with the same. I knew from that experience and my moms current stage of Alzheimers that a surgery was only going to progress the disease more and my initial decision was to do nothing. The ER doc supported that decision but after the neurologist came by they felt the surgery was necessary and pushed me to proceed. Making decisions for other people is hard y’all.
In the fall, I shared a little about battling alzheimers and at the time my mom was giving us a little trouble. There was a turning point, however, in November and her disposition had changed back to a much more joyful and calm version of herself. Still mobile, she and her little posse roamed around the facility and I often found her calming and caring for others. She had begun having more and more falls, however, and some seizure like activity I would later find out is common and labeled myoclonic seizures. These little seizures mimic the startle reflex you see in infants and it would literally look like a shock and she would become off balance and often fall. We were working on a new med to try and combat this but had not gotten started when the fall happened.
The memory care facility suggested I look into moving forward with a Hospice evaluation so we could get a hospital style bed and some other accomodations. I had no idea that hospice would come into the picture before end of life care but they will as long as there has been shown a progression of the terminal illness. The other thing I didn’t know is that there are SO MANY hospice organizations! After interviewing two, I learned so much and felt like this was the right next step for us. She would have more eyes on her weekly from nurses and additional caregivers.
I knew the surgery was a risk but she handled it so well while we were in the hospital. It was a long few days but she didn’t seem to be any worse mentally by the time she was ready to be discharged and she was walking on her own. I was optimistic she would transition back to her facility without too much trouble. My optimism lasted one day.
On day two she fell again and we made the decision to move her to a wheelchair moving forward and surpsingly she didn’t resist it or try to get out of it. She also no longer tried to get out of bed on her own. If you don’t know, the state does not allow bed rails but we were able to add a scoop mattress which made it harder for her to try anyway. Even with her mental capacity as it was, I think she was aware another freedom had been removed from her.
I am not disillusioned y’all. I know there is nothing that is going to make my mom better. Alzheimers is terminal period. But I slipped into such a depressed state going to visit her every single day and questioning whether or not the decisions I made were actually the right ones. I was doing the minimum to function at home and work and couldn’t pull myself out of it. How could this be happening yet again? I’ve got a senior in high school and so much to enjoy this spring and, yet, just like Dillon’s senior year I felt like it was all being robbed from me. I was angry that I was having to deal with it all and at the same time feeling guilty that I was having all of these feelings. It was a roller coaster.
And then…..Carly and I went away for a long weekend to visit Oklahoma State for Greek Discovery days. It was such a great weekend with lots of laughs and sweet time together. However, when I returned to visit my mom she was a completely different person. She could barely open her eyes, could barely form any words and the staff told me she could no longer feed herself. It was hard to see but even more upsetting was a med tech mentioned to me that she felt she was over medicated. What???
This post would last for days if I went into all the details but over the course of several weeks and more daily visits, it became a huge struggle for me internally to know whehter the decisions being made were the correct ones. How could I evaluate whether she was on too many drugs to calm her or whether the disease had just progressed? It took lots of tears, lots of research, lots of advocating with hospice and with the facility to finally get to a place where I feel we should be. Less drugged but definitely also progressed.
The thing that was upsetting me most was arriving to find my mom alone. It hurt my heart so much to see my social, loving momma no longer part of “the group” when I arrived. It hurt my heart to think that some part of her is still in there and knows that I’m not there with her. How do you know that you have made all the right decsions? How do you continue to function in your life and also honor someone as they progress through a terminal illness? I had racked my brain and had decision fatigue for weeks until I finally came to a place where I somehow found some peace.
One of the first things I learned when I took myself to therapy in 2021 was the concept of ambiguous loss. When someone has a disease like Alzheimers, you grieve the loss over and over. This disease is not a slow slope downward but often rides along before taking a big deep dive to the next stage. At every stage I lose another piece of her. I wasn’t just depressed the last two months, I was grieving.
Advocating for someone is the hardest thing I’ve ever done. I constantly question whether I’m doing the right thing or whether I’ve done enough. Adding grief on top really complicates your ability to think clearly and the lines get really blurred. Am I (insert emotion) because I don’t think the right thing is being done or am I feeling this way because I’m grieving?
For now, I have worked through this process yet again and have accepted we are at the next stage of this ugly disease. While my mom is still somewhat a missing person, losing another piece of herself, I have once again been found. I’m back to actually functioning in my daily life thanks to lots of tears, talks with friends and a much needed visit to my therapist.
The moments are much fewer and further between, but when my momma opens her eyes and she really sees me there is a moment of joy, however fleeting, and I know that she knows I’m doing the best I can for her. She can stiill pucker for a kiss and she still tries so hard to say I love you back. Mostly I know that it is because of the way she loved me and pushed me all my life that I have been able to keep pushing forward. I know she would be proud and I’m holding onto that.