The Gifts and Challenges of a Long-Term Caregiver Copy

My mom had COPD and congestive heart failure. I started caring for her in 2007 while also caring for my dad, who was dying of cancer. Sadly, he lost his battle in 2008 a week before his 73rd birthday. He did not pass away from the cancer itself. Rather, it was two weeks after I moved them from a condo on the bottom floor to the top floor. A fire broke out in the condo below, and they could not get him out in time; he had inhaled excessive amounts of smoke, from which he developed a bad lung infection. They could do nothing more for him.
A few months before, I battled to keep my mom in the hospital, where they wanted to release her back home. Had I not fought so hard, we would have lost her too as two days after they finally admitted her, she flatlined. Being in a hospital saved her life.

My mom’s care since then had involved normal things like taking her for groceries, doctor appointments, and errands. She also did just about everything with my partner and me: dinners out, movies, socializing, etc. The last two years started the slow decline. During excessive hospital stays, I spent most days up to six or more hours at a time. (I think I own shares in the parking lot, which, as we all know, is not free!) I witnessed her first come to terms with having to walk with a walker, then finally accept she needed home oxygen.
We moved her twice since my dad passed away, doing all the packing and unpacking and finally setting her up in independent care. I took over all the grocery shopping, laundry, and caring for her cat the last year or so. In her last six months, she was bedridden. I gave her sponge baths and calmed her down when she had trouble breathing. So many times, she would say she was so tired of this, to the extent that I wished she would just go only to feel guilty for thinking that.
The worst part was the last week of her life. She was hospitalized on a Monday, and I told the doctors that I thought she should be in hospice. Doctors refuse this option with patients in the end stages of COPD. They told me they can’t determine how long a person with COPD can live, as they can with a cancer patient. In the last week of her life, my mom lost her dignity. She was in a room with three other people, so she had a port-a-potty beside her bed. Although there were curtains, visitors for her neighbors made washroom times very hard on her.

She was living in independent care, and just before Christmas, they finally told us she would have to move as they had been breaking the rules for her for about seven months. They’d been bringing her meals upstairs, and the other residents were complaining. Mom’s funds were down to nothing, and with me being on disability, I had no money to help her out. I had meetings with the social workers to get her into residential care, as they wanted to send her back to independent care, meaning nobody would be with her at night. They would have to have a panel vote to see if she would be approved for residential care. They went to my mom’s sick bed and drilled her for hours and questioned her about her finances one morning without my knowledge.

Here was a woman who worked her whole life (sometimes two jobs at a time) and always paid her taxes and this is what they gave her during her last days. I did not see my mom the day before she passed away, as I thought I was getting the flu and the hospital was on lockdown with flu being rampant.

My dear mom passed away at 10:30 a.m. January 15th, 2018, alone. After her breathing was exacerbated, she had a heart attack. She’d indicated a do-not-resuscitate. The doctor called to tell me she was gone and seemed rather angry that I couldn’t get to the hospital, as I was in no shape to drive. My partner eventually took me to the hospital. I even did not have enough money to pay for Mom’s remains when they cremated her, so I had to return two pairs of shoes Mom had bought just before Christmas to help pay for it.

My mom passed away thinking she was going to be homeless, and worried about her cat Ginger. She knew I could not take her cat, but that I’d made plans for her to go to a cat sanctuary. Once Ginger was in the cat sanctuary, I worried about her constantly. The sanctuary made a YouTube video of Ginger that I shared constantly on pet groups on social media. I was very thankful that after a month and a half, Ginger found a new foster home. I donated $500 from Mom’s death benefit towards her future vet visits.

Being a long-term caregiver can be exhausting both physically and mentally and can take a huge toll on you. You get so used to caring for your loved one that you forget about taking care of yourself. Although it was hard the last year, I took some time for myself and anyone going through this: I encourage you to do the same. Caring for my mom for 11 years affected my own health, and I regret that I did not see this sooner. Once they are gone, your world changes, and it’s extremely hard to do things for yourself. Every grocery store you go into makes you automatically move toward the aisles of the things you would purchase for them.

I don’t regret being there for my mom, as it also brought me peace to know I did everything to care for her.

Mom, I miss you…