Back in the fifties, my mother and a bunch of her friends got together to have a little harmless fun…experimenting with alcohol and cigarettes. My mom got hooked and became a two pack a day smoker for over fifty years. She was never without them…all of my earlier memories are of her with her blue and white pack of BELAIR cigarettes close at hand.
Fast forward to 2006. Mom started complaining of pain in her right foot. Her little toe was black and blue. Both of us reasonably surmised that she had stubbed it, so we treated it as such. It continued to get worse. I called my dad and we took her to a Podiatrist…he said he didn’t like the looks of her toe and called her doctor. We had to take her to the ER. We were horrified to learn that she had ‘dry gangrene’. I always thought gangrene would have a horrible odor. I discovered this was not always the case.
A scan of her right carotid artery showed that it was 95% blocked. Mom was sent to Milwaukee to have the surgery, as there were no vascular surgeons in our area at the time. While we were there, I mentioned mom’s little toe to the doctors. They discovered that here arteries were blocked from her right hip all the way down to her foot. Another surgery was done. Stents were put in. The doctors all asked Mom what they needed to do to get her to quit smoking. They warned her that if she didn’t quit that she was going to lose her foot. As soon as she got out of the hospital, Mom was smoking again. She didn’t believe what the doctors were telling her.
I went from daughter to caregiver. I had to change the bandage on Mom’s toe twice a day. This involved gently wiping her toe clean with sterile gauze and a saline solution, then smearing an antibiotic cream on it with a q-tip before re-bandaging it again. Much to her doctor’s amazement, her toe completely recovered. It no longer had a nail, but who cared? It was as pink and healthy as if nothing had ever happened. Her doctor and I continued to plead with my mom to quit smoking to no avail. Two years later, her luck would begin to run out. I forced her to quit smoking in September of 2008, but it was too late.
When she started having trouble with her toe again, I put my foot down and forced her to quit smoking. We argued and fought like cats and dogs, but I refused to give in. I continued to bandage and care for her toe as I had done before, but this time, it did not work. Her doctor started making plans to remove her toe, until I pointed out that the bunion by her big toe was beginning to ooze pus and emit a foul odor as well. He had no choice but to order the amputation of the front of her right foot in March of 2009. Mom was left with a huge, gaping wound that needed to be flushed, medicated and bandaged three times a day. There are a lot of nerve endings in the foot, and this was incredibly painful for her. I apologized profusely for causing her discomfort. When I was finished, I would go out into the living room and sob quietly after each ordeal, the image of that wound haunting me like a grotesque monster in a gory horror film.
We both went through three months of hell while waiting to see if her wound was going to heal. Sadly, the circulation was just too compromised. In June of 2009, Mom lost her right leg below the knee. At this point, she had also begun to use oxygen. She had an oxygen concentrator that was set on ‘2’. She had an inhaler that she used if she got short of breath. She was in post-surgical rehab again for awhile, then she came home. Her amputation wound healed beautifully, and a prosthesis was made. Physical Therapy was added to my growing list of responsibilities for her care, along with the growing list of medications to be dispensed. Everything seemed to be going pretty well. And then…
It was March 2010. Mom called me into her room and said she needed to go to the hospital because she couldn’t breathe. I took her to the nearest hospital…they said five minutes more and they would have had to intubate her. They discovered she had an irregular heartbeat and put her on Digoxin. They also put her on steroids to help relieve the inflammation in her lungs. The side effect of steroids is high blood sugar. In an attempt to help Mom breathe better, she now had to have insulin injections as well. A bronchoscopy was done a few days later. Doctors suctioned a bunch of crap out of her lungs. Mom regularly complained that it felt like she had a sponge in her lungs and that she wasn’t getting enough air.
She went into a nursing home for rehab. Only days before she was to come home, she was sent to the ER again. After sitting on a cot for too long, Mom got a cramp in her hip. She went into respiratory distress…I watched in horror as her condition began to deteriorate rapidly. She was in the hospital for about 10 days before her doctor made the decision that she would need around the clock care by more than just me. Mom was put in a nursing home at the beginning of June, 2010. I cried and cried and cried…I did not want her in that godawful place. I wanted her home where she belonged…and so did she.
In July of 2010, I discovered that a nursing home employee bought my mom a pack of cigarettes at her request and that not only had she been smoking for nearly three weeks, but they had been sworn to secrecy due to a ‘patient’s rights’ policy and were forbidden to tell her doctor or me. My response was positively nuclear. I reamed all of them a new asshole, telling them they had no right to call themselves a ‘health care facility’. This is a woman who has four breathing treatments a day, who is on oxygen (now at level ‘4’) 24 hours a day, is on steroids to reduce inflammation, on insulin because of the steroids, on Advair, who goes into respiratory distress at the slightest physical effort. I trusted them with my mom, and they went out and got her the one thing that was killing her. They had no legal right to honor that request…not as a health care facility. Let them kill their own family members if they want to.
I called up her doctor, crying my eyes out. He said he would take care of it. I have no idea what he said to them, but I wish I could have been a fly on the wall for that visit. He was none too happy with them either. I spent Friday afternoons with my mom when she was feeling up to it. We would go up for ‘Happy Hour’ in the penthouse and listen to music and have snacks with some of the other residents, then either go outside and talk for a while or back to her room to watch TV. I took home her clothes to wash. I cleaned her partial. I got her fresh ice water. I helped fix up the food on her tray for her. I brushed her hair and pulled it back in a ponytail. The whole time I just wanted to pick her up and carry her out of that place. I hated it so much…I hated leaving her there…
One day she was having so much trouble breathing that they were giving her consecutive breathing treatments. The fear in her eyes as she tried to get air was too much for me. I stood at the foot of her bed, sobbing in misery. She threw her pillow at me and told me to knock it off, that she was going to be just fine. In November, she had to go to the hospital and have a transfusion. I had been hounding the nurses for weeks that Mom looked anemic, that she was losing quite a bit of blood from her diseased left foot and that they needed to order a blood count. By the time they got around to it, they had to rush her to the hospital because she was down to less than half her blood volume. They infused it much too quickly in the ambulance (for her)…the increased blood volume made it more difficult for her to breathe. She spent a week in the hospital while they got things back under control.
In December, Mom was hospitalized with pneumonia. After the pneumonia was treated, her left leg was amputated below the knee. The surgeon removed the front part of her foot to check for damage, but the gangrene had already progressed too far to do a partial amputation. This wound also proved to be a quick healer, which made everyone happy. Mom now had two prosthetic legs for her Physical Therapy. It took everything within me not to stare at the two stumps outlined beneath the blanket. I wanted to scream in frustration…it was all so damn senseless…and I had a terrible sense of foreboding that this was going to be Mom’s last Christmas.
April 19th, 2011. 6:30 a.m., the phone rings. The nurse went into the room to give Mom her medicine. Her eyes were open, but she was non-responsive. The ambulance was called…she had already flatlined twice before the ER doctor called me. He mentioned the DNR order…I asked him to please try to keep her with us until my brother and I could get there. I met my brother at the hospital, and they ushered us into the Family Room. It wasn’t long before her doctor came in and told us Mom was gone.
We went in to see her. She was lying on a gurney, her left eye slightly open. I was bewildered by the lack of expression on her face, because I still couldn’t believe she was really gone. Her face always lit up when she saw me, she was always so happy to see me. I sat down next to her and stroked her forehead, singing our silly song to her one last time as best I could without falling apart, waiting for her to sit up and say ‘April Fools’! I was deeply disturbed by the lack of response from the empty shell that now lay before me. Everything that had made my mom ‘Mom’ was gone forever. She just wasn’t in there anymore.
The ER got busy, and they moved Mom down to the morgue before the minister got there to say the blessing. My brother and I had to stand next to Mom’s body on the gurney in front of the doors to the cooler, the white bag partially unzipped for us so we could see her face, which was already starting to discolor in death. I kissed her on the forehead one last time, then felt down along her right arm until I found her hand. I gave it a gentle squeeze one last time before walking away.
A week later, her ashes were delivered to me in a box, which was surprisingly heavy despite it’s size. They will be scattered according to her final wishes as soon as transportation arrangements can be made. I’m trying to remember happy, beautiful things about my mom, but my role as caregiver for the last five years is making that impossible. My memories are full of intense suffering, gaping wounds, cries of pain, and watching my beloved mother slowly suffocate to death because of her lifelong addiction to cigarettes.
Please, don’t make your family members, friends, or anyone that loves you suffer the same fate as me. I will be haunted by my mom’s intense suffering every day for the rest of my life. She didn’t believe it when the doctors said she would lose her leg. She wound up losing both of them. She lost her health, her independence, her dignity, and eventually, after much suffering, her life. She spent the last few years of her life longing to do all of the things that once made her so happy; gardening, fishing, baking, feeding the birds and so much more. Most of all, she just wanted to be at home. She gave up her life for cigarettes. It wasn’t worth it.