The Life of a Caregiver

As the ambulance drove away down our street, an unconscious sigh of relief left my lips. It had been almost a year since I had a break from being a caregiver. Almost three hundred and sixty-five days without a single day off. Try that in a normal 9 to 5 and remain sane. Not that I can claim sanity on my resume. Sanity tends to get left behind with the friends, the fun and the relationships that were once not even considered that important. Blase` comes to mind.

Time slides by way too quickly in everyone's life, but as a caregiver, time becomes a double-edged sword. How can one day go by in the blink of an eye, and yet, seem to take forever to pass? We don't tend to think too much about matters of philosophy when there is food to cook and serve. Dishes to clean and put away. Washing to do and hang out to dry, then bring in, fold and put away. Groceries to get. Medications to dispense and entertainment to procure...be that finding a suitable program on TV, or just sitting and talking to someone who is interesting and yet, I don't have enough care left in my tank to listen to.

Don't get me wrong here. I love my mom more than I love myself. And it shows because 'myself' took a backstage pass a very long time ago and I haven't seen or heard much from me since.

I used to take regular breaks (back before a pandemic made everything so much harder), although this was always the final nail in my coffin of energy to complete. Unfortunately, organising respite care doesn't mean dropping a loved one off, with a kiss on the cheek and a "see you in two weeks" kind of deal. Oh, no, there are forms to be filled out and medications that must be blister packed. Clothes to be packed, and that's just for the care receiver. Then there is the juggling act of when a place becomes available for the loved one in respite, which needs to coincide with when a motel booking can be confirmed...a which one comes first, the chicken or the egg, moment. And the list goes on. By the time I have it all sorted and arrive at the place I have booked and paid for my two-week break, I collapse. Then it literally takes a few days to recover just from this ordeal.

Is it all worth it? Absolutely. When I drop my mom off at respite, the guilt I feel is not some figment of self-loathing come to pay its dues. These places are cold and boring and are filled with residents who are not lucky enough to have family who love them enough not to just dump and forget who it was that changed their shitty nappies and paid for everything until the proverbial birds flew from the nest...all sitting and staring at the walls waiting for the inevitable...a fate worse than death in my opinion.

That will not happen on my watch. No matter who in my family decides that a trip around Australia, or raising grandchildren that the parents are, it appears, too busy to do, or drinking themselves into oblivion because that is all they care about doing, is more important than asking if we could use some help. Help that involves more than showing up every second Sunday for a cup of tea and a chat about what's been going on in THEIR lives. Ask for help with the housework or any of the other hundred menial chores that go hand in hand with being a caregiver, and the blank looks are all the answers I need.

I got a call from the hospital to say mom is doing much better. And the only family member who takes any interest at all advised me to put mom into care. I can't be mad, after all, she was only being considerate of me. Knowing the sacrifice I have made and thinking it's about time I spend some time finding my life again.

I had to apologise to her for my obvious stupidity when I said, "That ain't happenin' sis!"

To which she sighed and went back to her own life. Mom will be fine, and I will be too. We have been for the last nine years and until the point comes where she either dies, or I cannot care for her because of advanced medical complications, we will continue to be fine.

Update

I tried, I really did. When mom arrived home, I could see that things were going to be difficult. But, I had no idea just how difficult it was going to be. When there's a shift change at the hospital, the nurses who are leaving take the ones who are just starting around to each patient and explain their progress and any changes they will need to be aware of. This didn't have for me. Mom arrived home by Amber and they brought her in and left.

In those first few hours I realised that there was no way I could look after her in a home setting. We focused on the fact that we got to bring her home. We spent 24 hours together where I made her favourite cup of tea and she got to sleep in her own bed (it turns out for the last time). By the next afternoon, the pressure on me was getting too much. With no support, no family members who should have called in to make sure that we were OK. With no one to turn to for help and no idea of her condition when she was discharged, I bit the bullet and called an ambulance.

It was one of the hardesrt things I have ever had to do.She begged me not to send her back, but for her and my own sake, I had no choice.

When I visited her the next day, the doctor gave us the reality of her situation. When discharged by the first hospital, she had not had a bowel movement for four days. She had so much fluid retention, the antibiotics she had received hadn't worked for the infection on her leg, and these things made the job of bringing her home an impossibiity. I simply didn't have the support or the skills to care for someone with such high needs.

Mom then spent another four weeks in another hospital in a rehabilitation ward. And in those four weeks, she lost so much. Hospitals don't like old people moving around without some support and because the physio had a lot of patients to assist, it didn't take much for mom to stop trying and the physio to move on to the hospital patient.

Mom received a prognosis from her doctor, who explained that her heart was failing. Add to this her kidney function was not good and they gave her about a year to live.

And then, the day before she was due to be released from hospital and move into her new home at a retirement home just a few minutes from out home, she tested positive for Covid and was transferred to an isolation ward in the same hospital.

By this stage she had had enough and her mental health began to suffer. She was short with the staff and it must have been a very trying time for her.

While she was in the Covid ward, she claims that two nurses came into her room and one of them told her to take her medication. Mom refused and the nurse forced her to take a pain tablet by physically putting the tablet in her mouth and using her fingers to force it down mom's throat. She then poured water into mom's mouth. When the nurse was done, they both left mom with a wet gown which she spent the whole night in.

When she told me about it on a phone call, I found it hard to be that sometime like that could happen to anyone in a hospital, let alone an old lady. The fact is that because of her condition, she could have died that night.

I immediately made a complaint to the hospital and they seemed very supportive at the time. They said they would investigate and let me know the outcome in about a month

Over a month later I called them to see if they had found the perpetrator. The investigation was conducted by the head nurse of the Covid ward and she informed me that she could find no one who fits the description mom gave. She didn't ask any of her staff about the incident and it was obviously a cover up.

Mom was fine and it ended up that I suffered more than she did. It still bothers me and it reminded me of the movie, One Flew Over the Cockoo's Nest.

Mom was discharged and is reasonably happy where she is. The staff are awesome and my attitude towards these places has changed, becoming more accepting of the need of older people who no longer have the capability of looking after themselves.

I now live alone in our family home. The funny thing is when I was visiting mom today, I remarked on my thoughts for the last few years we were living together. After doing that job for so long, I became burned out and all I wanted was to be free from the responsibility and the life of a caregiver. And today I told her now that I have that, all I do is miss living with her and the relationship we had.

I visit her most days and we still have a strong bond. But when I leave, in many ways, we are both less than we were before.

Necessity brought us together when I separated from my wife and moved into my parents house nine years ago. And now, necessity has made the decision for us again.

These last nine years were good years for me and I know she feels the same. I wouldn't have been so sure about that just a few months ago. We are connected in a way very few people are and when the time comes and she is gone, no one will miss her more than I will.