when my body won’t hold me anymore and it finally lets me free, will I be ready? when my feet won’t walk another mile and my lips give their last kiss goodbye, will my hands be steady when I lay down my fears, my hopes and my doubts, the rings on my fingers and the keys to my house? with no hard feelings…
Life sometimes has a way of making us feel uncomfortable. I feel that I am uncomfortable most of the time. The level of discomfort depends on where your head is at. It can be a tiny blip on your radar if you’re feeling pretty good. And it can skyrocket if you aren’t feeling so great (mentally, physically, whatever). I have been feeling uncomfortable for longer than I can remember. My anxiety is higher than it’s ever been. I can’t get my thoughts to last longer than a few seconds (my notes have notes). My heart is almost always racing and I just don’t feel right. My sleeping patterns are all over the place because I’m not calm when I go to sleep. I know the reason why and it’s unfortunate that at this moment no one can really help me. The only thing that I can do is write it out.
My grandmother has been one of my primary priorities for the last decade plus. The last couple of years have been a little chaotic because obviously she was aging (like the rest of us) but she was finally at the point where she was acting “old”. She couldn’t hear or see too well and everything was becoming a struggle for her. She still lived alone, cooked 3 meals a day for herself and her routine was pretty much the same everyday. There were times where I would be concerned but they always passed. Somewhere along the line I lost all sight of rational thought when it came to her and I don’t regret a second of it. I called her a million times a day for my own sanity. If she was ok then I was ok, that’s just how it worked. I called her before bed every night just so I could sleep soundly knowing she was alright.
One night a few years ago, I called 3 times before bed with no answer. My husband, knowing my neurosis when it came to grammy, said let’s just go over there and check on her. When I got to her apartment I noticed that her door was ajar and I heard a very faint “help” coming from inside. My heart dropped into my stomach and I ran down the hallway. There she was, sitting on the floor, her dinner still on her walker by the door. While she was getting dinner ready, around 5:30 PM, she lost her footing. She fell so slowly that she didn’t hurt anything but she didn’t have the upper body strength to lift herself up. She crawled over to her chair and sat on the floor so she could watch TV. I showed up at 9:45 PM. She sat there for 4 hours. I had bought a Life Alert (the “I’ve fallen and I can’t get up” button/system) for this exact reason but the button was in the basket of her walker, not around her neck. I called my husband to come in and help me lift her up. We stayed there until she went to bed around 11 PM because I was terrified to leave her alone.
I know this probably sounds completely insane but it made total sense to me. She needed me and I had no problem taking care of her. If I called in the middle of the day and something was wrong with her TV, I would leave Manhattan during my lunch break, take the train back to Queens, walk to her house, fix it and head back to work. It was usually an easy fix, like she pressed the wrong button because she couldn’t see very well. People would ask me why I would run over and my answer would always be that she was my old lady and I would do anything for her. If all you did all day was sit and watch TV and the TV was broken, what would you do until I got home from work? Maybe I was wearing blinders but the way I saw it was that she always took care of me growing up so why wouldn’t I reciprocate?
I hate it when people ask me why I did stuff like that for her. I never felt obligated to take care of her. It was second nature to me. And yes, sometimes I would get frustrated because my nerves were completely shot, but when she was good, she was good for a while. I always had faith in the back of my mind that she would get back to good.
When COVID hit and the world shut down I didn’t want to put her at risk. I was working from home and was only a few blocks away if she needed me. I stayed away out of sheer paranoia, plus my husband was still going to work in the city everyday and we didn’t know at the time if he was at risk. We didn’t see anyone but each other for 6-8 weeks. I think we can all agree that March-May 2020 was a really weird time and just like the rest of the world we only saw the people we lived with. I called grammy a million times a day and our conversations were always very light despite all the shit going on around us. When the weather got nicer we would go over to her house and take her for a walk or sit on her front porch for a little while just to get her out and keep her moving.
Things were good for a few months. She didn’t complain much. I remember feeling relieved and impressed that she was totally fine during a global pandemic. Our weekly visits resumed and things seemed to be getting back to normal (whatever the hell that was/is). Sometime after the summer, it’s all a blur right now, her health started to decline. She was going to bed really early. When I would call her during the day she would get mixed up about what time of day it was. She’s in her late 90’s so it’s not like that’s unusual for her age. All things considered, she was in really great cognitive health. I felt the anxiety start up again and I reverted back to my old ways of calling her a million times a day.
Sometime in September her health took a really strange turn. I was going over to her house in the morning before work and at night after work. I’m not going to get into what I did when I was there because it’s irrelevant. Every night I tucked her into bed, told her I loved her, locked up and went home. It was exhausting, but at the time it made sense to me. I finally got her an appointment with a specialist and thought we had finally gotten her pain resolved and under control. But when I called her the next day she was in a different kind of pain and I realized that this was beyond anything I could do to help. I contacted a home health aid agency and scheduled a cleaning service to deep clean her apartment before the aid started the following week.
This particular turn of events made me believe that everything happens for a reason. I hired the health aid and we arranged for her to start on Thursday. I ordered some things to help grammy around the house and got her a brand new walker to cruise around with. I got a phone call telling me that the aid could actually start on Wednesday. My grandmother wasn’t keen on this idea but she refused assisted living and I told her this was our only option. I told her it was like having a personal assistant and she liked that idea. I was really impressed with how respectful the aid was and she treated my grandmother with so much kindness and I was so happy that my grandmother was happy with her.
The next day, Thursday, was bad. I called when I got to work and my grandmother wasn’t feeling well at all. The aid got there a little earlier and called me. She said she made grandma breakfast but she was having a hard time eating. Her stomach was a mess and nothing seemed right. My mother was off from work that day and I told her to go over. I told her that if grammy was in bad shape to push the Life Alert button. When my mother got there and spoke to her, she explained that if they pushed the button she would be going to the hospital. My grandmother told her to push it. My grandmother hated that button, so for her to give consent to push it, things were bad.
Everything happens for a reason. I’m so grateful the aid was with my grandmother a day earlier. I’m glad she paid attention and knew something was wrong. I’m so grateful that the she was with her and that my grandmother trusted her. They rode in the ambulance to the ER together and my mother followed behind them. Since we were still in living in pandemia, my grandmother was admitted to the ER alone. It was unnerving waiting on phone calls from doctors and I couldn’t imagine what it was like for her.
She was diagnosed with colitis and hypokalemia (potassium deficiency) which was so low it could have been fatal. She was admitted and they were dosing her with potassium every 4 hours for 5 days until her levels were finally normal. Visiting hours were a little better once she was admitted and a few of us took turns going to see her. She was still her feisty self but most of the time she was confused and out of it. When she was released a week later they put her in rehab at a local nursing home to get her walking again. She was confused and agitated and it took her some time to acclimate. The nursing home was closed to visitors due to COVID. After a week it was recommended that I fill out the paperwork for long term care since her doctor would not release her to go home alone. She was approved which was great but the whole situation was weird. Things would have been easier without a goddamn global pandemic, obviously (eye roll).
After a few weekly FaceTime calls with her I noticed that she was starting to act like her old self again. I spoke with her children and her doctors and nurses and decided she was the perfect candidate for assisted living. It would be just like living on her own but professionals were there if she needed them. I was excited to see her in person after 2 months but when we got to the assisted living she was furious with me. She expected to go to her own home and couldn’t understand why I brought her to this place. That was a really bad day. The director of the assisted living told me to stay away for a few days and let her get used to it. Within a week she had calmed down and the agitation and confusion had subsided. She was at the assisted living for 24 days.
I went to visit on a Friday afternoon in January so that I could fix her TV (some things never change). The facility was still not really allowing visitors but because she was still fairly new they were a little more lenient. She was in good spirits and we had a nice time together. She asked me to take her outside for a cigarette. After 70+ years of smoking I guess that urge really never goes away. She hadn’t smoked in about a week and got lightheaded. When we were coming back inside, it all happened so fast, but she lost her footing, fell and broke her hip. Or her hip broke and she fell. Either way, I blamed myself. I couldn’t catch her before she hit the floor. I shouldn’t have taken her out for a smoke. The list goes on. They rushed me out of the facility because technically I wasn’t supposed to be there. She got rushed to the hospital and I got a phone call from the surgeon that night telling me her surgery for half hip replacement was scheduled for Sunday morning.
The surgery was a success considering her age. Obviously, she had to get readmitted into rehab once she was released from the hospital. She has been there ever since. Since she was gone for less than a month, I didn’t have to fill out any new paperwork. Her confusion and agitation was worse this time around. She had major surgery and has no recollection of any of it. She has no idea why she isn’t able to really walk. And this whole thing has been nothing but absolute heartbreak. I’m not even saying that for dramatic affect. I know this post is extremely long but it is my life right now. I took care of her for so long and I can’t help but think that I failed her.
None of this makes sense to me. I am doing my best to advocate for her on the outside. Visits finally opened up again so we have been able to see her every week. But it’s absolutely devastating that she is trapped in this body that sits in a wheelchair all day. Her mind is there most of the time which is a blessing and a curse. Part of me wishes she didn’t realize what was going on, but most of the time she does. You would think that considering how involved I was before, maybe a little too much, that this would be a relief for me. She is finally getting the care that she needs. But it’s not. I’m absolutely gutted. I am riddled with guilt and my primary emotion is sadness. I am not alright.
I don’t understand what kind of lesson we are supposed to learn from this. This was not the life that any of us wanted for her. Am I supposed to learn that life isn’t fair sometimes? I knew that already. It is devastating to see her living this miserable existence because she doesn’t deserve it. She deserves peace. Even if I could move her out of there I wouldn’t. The time for her to acclimate to someplace new would be even longer and that’s not fair to her either. It just makes me so sad that this is how she is going to live out the rest of her life.
It really upsets me when people tell me that I finally got my life back and that I’m “free”. I’m free from the burden of taking care of her. She was never a burden to me. All this situation has done is amplified every bad feeling that I had. The guilt, anxiety, all of it. I want to scream at myself for all the times I got frustrated out of exhaustion and just wanted her to agree to go live at a place that could help her so I could get a break. I’m so upset that I didn’t see what was happening and waited too long to get her help before she got sick. I told myself I could handle it and I failed.
Do you just turn those feelings off? HOW? I tried online counseling during her first week back in rehab thinking that if I could just talk it out with someone that I would feel better. The counselor would ask me questions like “what’s the worst case scenario, you get the phone call that she passed away?” NO. That’s not the worst case scenario. The worst case scenario would be that something bad happened to her that would set her back another few months and once again I wasn’t there to help her. And I know that sounds codependent and dramatic but I don’t care. All of this is out of my hands and I’m not ok with it.
The only thing that I can do is speak to her social worker to correct the things she complains to me about and that brings a twinge of calm my way, but it doesn’t last long. Maybe I could use some more therapy but I’m not in the right head space to spend time and money that I don’t have on something I know won’t help. I see her face when I close my eyes and I wish so badly that I could just wrap her in a bubble and protect her.
I appreciate you reading this post and if you made it all the way to the end then you are a champ! I know that things will get better but we often don’t see the light until we are out of the woods. And I am very much in the woods right now. Above all things my grandmother is being cared for whether she wanted to be or not. And I’m grateful that at 98 she is still the spitfire she always was. I just want what is best for her and I’m not sure that either one of us knows what that is at this moment. And if you read this and thought that this whole scenario seemed a little extra you’re probably right, but I can’t hear your negative opinions on it. I should be able to confidently say that everything is fine but I need to get used to it and accept that fact. I am very uncomfortable and I’m doing the best that I can.
when my body won’t hold me anymore and it finally lets me free, where will I go? will the trade winds take me south through Georgia grain? or tropical rain? or snow from the heavens? will I join with the ocean blue? or run into the savior true and shake hands laughing? and walk through the night, straight to the light, holding the love I’ve known in my life… and no hard feelings…
Song name: NO HARD FEELINGS/ Artist: The Avett Brothers/ Year: 2016
TALKING ON EGGSHELLS 