LA is a writer who learned about wound care and other forms of caregiving through caring for her friend.
Nikki, my best friend, before she got sick.
Four years of caregiving
Every caregiver has a moment when it hits you that you’re missing out. It’s going onto a social networking site while your loved one rests and seeing that your friends are enjoying themselves. It’s being invited to a party and having to decline because your loved one is too fragile to be left alone or because there is no one who can cover for you or because, while your loved one was invited, the venue isn’t handicapped accessible. It’s looking in the mirror and seeing grey hair starting to come through and wondering where the time went. It’s being reminded of who you were and of adventures you shared together before they got sick. The moment comes and you deal with it in your own way.
For me, I would get passive aggressive. I would receive the reminder and get quiet. My best friend, Nikki, would turn to me and ask what was wrong because, as we had known each other for so long, even with her back to me, she knew all wasn’t right. If I was feeling up to it, I’d tell her what had provoked me. If I wasn’t and, I typically wasn’t, I’d say nothing. She’d try to guess. I would burrow further into myself. She’d guess some more. I’d keep burrowing. Eventually, she’d wrongly say that she knew what was wrong. My mood had to be because of her illness or, more specifically, her reliance on me. I would deny it. However, she wouldn’t believe me. She’d instead apologize and offer to call her doctor to see if they’d send nurses or other aid to relieve me.
My Nikki died earlier this month. The death certificate gives cause of death as cardiac arrest mixed with sepsis and a heaping handful of osteomyelitis aka a jerk of a bone infection. She had been sick for a few years. Though not diabetic, she had diabetic foot ulcers that never seemed to heal. They just would, despite how clean and medicated you kept them, get infected. After her third of five hospital stays for them, she was diagnosed with the terror of a bone infection that she never fully got rid of. Doctors suggested that she have a below the knee amputation, but we vehemently disagreed. An amputation wouldn’t have necessarily saved her life, but it would’ve made her more disabled than she could emotionally handle.
Standing beside her bed in the ICU, surgeons debating whether cutting off the misbehaving limb from her heavily sedated and intubated body would save her life, I remembered a meeting we had with a doctor nearly two years ago. Though pre Covid I would’ve stayed with her in the hospital, I wasn’t visiting yet that day when someone from the “ortho” department came to speak to her. Nikki had asked the doctor if she could have me on speakerphone for the meeting and he agreed. Though not the first to suggest it, this doctor emphatically tried to convince us that an amputation was the way to go. He reminded me that, should the leg become a matter of life or death and she couldn’t speak for herself, I, as her healthcare proxy, would have to decide what to do. Nikki cried and I got angry and the doctor, having plead his case, departed, leaving me to, from miles away, calm her down. From that moment on, she was petrified of losing her leg and made me promise that I’d let her go before I made her an amputee. As they examined her this last time, I started to frantically internally ask myself if I could break my promise. How angry would Nikki be at me if she woke up sans one leg? I didn’t have long to debate. It only took them a few minutes to decide that an amputation wouldn’t save her.
After you lose someone, especially someone under your care, you start to wonder if you could’ve done more or behaved differently. Was I too worn down from being her 24/7 caregiver that I was unable to see she wasn’t doing well before it became an emergency? Should I have accepted her offer to get her doctor to send in nurses again so that I could’ve just been back up help for when the nurses couldn’t be there as I had been when the foot was first wounded? Would she still be alive if we had told everyone with a contrary opinion to buzz off and let her heal at her own pace? I’ll always wonder if even the slightest variation could’ve changed the outcome.
I was looking through some old photos the day after Nikki’s funeral that she had taken the summer after we had graduated from college. We looked young and hopeful, unaware that life could possibly ever challenge us. Though it had been mentioned to me before, I finally saw the toll that years of illness had taken on her. The pictures made our room feel so much larger and, overcome with the reality of everything, I sobbed. If she had been there, she would’ve asked me what was wrong. I probably would’ve taken a deep breath, wiped my eyes on my shirt and asked her what she wanted for dinner. Instead, I just stared at the empty bed and held the pictures close to my chest, unable to stop crying.
I have found that people will applaud you for being a caregiver. They’ll tell you it’s a loving and noble sacrifice, something that they couldn’t do and something that someone in Nikki’s position should be endlessly grateful for. They ask you to consider the monetary side of it and question if you ever wondered how much money you could make it you did it professionally. Sometimes, they’ll offer to help you, but usually they don’t.
For me, the only positive side of being Nikki’s caregiver was being able to spend time with my best friend. I got lonely for companionship when she’d pass out on me. I got angry that she was sick and that nothing could be done about it and that no one was helping me. I went to bed scared that she wouldn’t make it through the night or that I, in neglecting my own health, wouldn’t either. I longed for our life before she got sick and naively held out hope that we’d get to have it back one day. I envied people our age who had different concerns than us. I mulled over what I had wished I had said to know-it-all doctors and rude nurses and receptionists which kept me up at night.
I wish I could’ve been given the clarity that losing Nikki has given me without losing her. Having been long enough out of a bad environment, there are fixes that I so desperately wish I could make now. For starters, I would’ve been more honest with Nikki about my feelings. As we have many of the same friends, I know she was seeing the same updates as me and feeling just as envious. I know she wanted to attend more gatherings but understood that her body couldn’t handle it. She didn’t have to notice graying hair to realize that time was slipping away. She missed our adventures too. In my not being open with her, I made our pain doubly worse.
I also would’ve tried harder to get Nikki into a less stressful, more handicap friendly living situation. In gratitude for her simply being alive, we didn’t do enough to make sure that she got to live. We settled too much, for too long in a bad situation and we both paid for it. I hope that in the future, more low income, handicap friendly apartments can magically appear so that people who are presently in our situation can get to have what we didn’t get to. Resources should be made more readily available from anyone (state, health care, etc.) who can offer them so that the patient can focus on healing and the caregiver can focus on supporting them.
If I had to offer my caregiver self one piece of advice, I would tell her to take daily inventory of the situation with full discloser to Nikki. If you’re consistently waking up or going to sleep in a panic about the day, you’re going about things wrong. Yes, caregiving can be stressful and overwhelming especially if you’re without help. However, unless things are crazy, the needs of your loved one don’t vary that much day-to-day. You both need to eat. You both need to get washed up. You both need sleep. You both need entertainment to distract you. If there are wounds, you change the dressing at the frequency necessary. If there is medicine to be taken, you set a schedule early on that you don’t veer from. If you find yourself drowning, you need to reach out for help because chances are, if you’re drowning, your loved one is too.
I did my best in taking care of Nikki. I may not have always been patient with her, but she knew every day that she was loved and that my favorite place was right next to her. I didn’t need her constantly thanking me or financial compensation to know that I was appreciated and that my time wasn’t being wasted.
I know that not everyone who is a caregiver is taking care of someone that they adore or made some of the happiest memories of your life with. I’m well-aware that many caregivers have been forced into doing what I chose to do and that their “patient” could be a real jerk. To those people, you have my sympathy.
No, caregiving isn’t for everyone. It’s a commitment to do right by someone for an unspecified amount of time that takes a major toll on all aspects of your life. In caregiving, you are saying that someone else’s welfare is more important than your own so it’s not for the self-centered. Caregiving is being woken up from a solid sleep to clean up a mess and having the self-restraint to not get angry or, at least to be able to disguise it well. Caregiving is lifting a super heavy wheelchair into a trunk on a hot day after getting your loved one into an air-conditioned car after pushing them around a hospital/doctor’s office that is staffed by unhelpful people who would sooner criticize your “driving” skills than offer to help you out and still being able to ask your person what they might like/need to do before going home with a smile. Caregiving is making sure that your loved one has what they need so that they have a chance of getting better with as much dignity intact as possible.
I wish the outcome had been different because, having had a break from our stressors, I know I could’ve continued taking care of Nikki forever, but it was her choice to go, not mine. More so, like many of you, I just wish that my favorite person had never gotten sick because she was an amazing person and had the potential to do anything. I have many regrets but being my Nikki’s caregiver from the onset of her illness until the end isn’t one of them. It was one of the hardest things I have ever done, but it also may end up being the most important thing I will ever do. Caregivers, be patient and understanding both to your loved one and to yourself for it’s a trying time, but it won’t last forever.
This content reflects the personal opinions of the author. It is accurate and true to the best of the author’s knowledge and should not be substituted for impartial fact or advice in legal, political, or personal matters.
© 2022 L A Walsh