Don't Let the Sun Go Down On Me

What a year!

When I visited my mother on Sunday she told me “I feel like a candle that is slowly going out.” How do you respond? Especially when it’s true.

It has been over a year since I last posted and what a year it has been.

When I last posted, I had just started a new role, managing two community centres in West Auckland. The community is one of New Zealand’s most deprived and culturally diverse areas in the country. Locals, refugees and migrants between them speak over 20 languages, and many had no idea how the country works. For example, for us, the library is a place to go and get information. For many of our new migrants, it is a place only scholars go. Many come from countries where they do not trust the government. I had 7 staff and a community of around 30,000 people, with a large percentage unemployed, many who may never be employed, and many who couldn’t make enough to keep both a roof over their heads, and feed their families three times a day. I set out to make a difference.

About a month after I started the new role I received a phone call from Whangarei Hospital saying that my mother had a fall and had been admitted by ambulance. They told me it was serious and I dropped everything and took a 2 hour drive hoping she was OK. She had been living on her own since my father passed away about 3 years before. On my last visit she had been telling me how strong she was. I had no idea what was waiting for me.

What happened would have a profound effect on my mother’s life, and ours.

She had been outside in her garden tending to her flowers that afternoon, and somehow had a fall. She landed on the concrete path and came to on the ground having broken her breastbone, amongst her injuries. She was unable to get up. I guess I should tell you at this point, that she was 94 years old.

She called out for help, hoping the neighbours would hear her. The neighbours on that side of the house were out of town. Nobody heard her and her calls became cries, and then whimpers. She lay there for hours.

Eventually she somehow managed to drag herself, crawling along the concrete path tiles, up some steps, and eventually into the house. This was a feat of inner strength. Let’s call it survival instinct, because that was what it was. It must have been hell for her.

She then crawled into the lounge, and from the evidence of the carnage of up-ended chairs, upside down pot plants, and the coffee table on its side, it was evident she had tried to pull herself up. She failed and injured herself some more. To make things worse, she had been on fluid tablets, I don’t need to share more, but it is relevant. She could not get up from the floor.

That was where she was found by her caregiver the following morning, some 18 hours after the accident, still on the floor, crying “Help me” in a weak voice. After calling the ambulance, the caregiver called me, and I was on my way within 15 or so minutes.

She spent the next month in hospital, doped up and severely constipated from the morphine. She suffered from severe anxiety and was away with the fairies a lot of the time, partly from the meds and partly from severe constipation. The hospital, as are all our hospitals was severely understaffed, so at times I got to know my mother better than I ever wanted to. According to statistics for last year, our little country was short of an average of 587 nurses per shift!

My brother and I took turns driving 2-3 hours each way a couple of times a week to spend time with her, to give her some emotional support, and then after a time her team decided that she was not capable of going back home yet, and should go into respite care in a rest home for 6 weeks.

She was taken to the rest home by ambulance, a nice place, where she was able to convalesce and get her strength back. She couldn’t wait to get home again, and eventually she did, with arrangements for caregivers to help her with showers, cooking and housekeeping.

What a relief, she was back home! She was so happy to be back, cuddle with her cat and return to her old life. We went back to our homes knowing she was on the mend.

But nek minnit. The phone rang around 6 am. It was the hospital. Mum had got up at 4 AM to go to the bathroom, slipped when she leaned on a silky throw on the bed, and fell between the bed and a set of drawers, breaking a toe and fracturing her back. She hadn’t even been home for 24 hours.

So back to the hospital. More drugs and physio, and eventually she was to go to another rest home for more respite care. Unfortunately she was not able to get into the nice property she had stayed at last time. This started a whole new series of events that none of us were prepared for. I’m not going to name the place but it was a horror show. It was an example of everything that can be wrong with the industry. The first sign that something wasn’t right when we arrived to help settle her in, was that pretty much everyone there was in a zombie like state, almost catatonic.

She asked “Why am I here with all these old people? I’m the only one who is awake.” She was older then almost all of them.

It wasn’t long before she was in a similar state. They had decided that they would keep her on the opiates, antipsychotics and antidepressants that she had been taking in the hospital, because nobody told them not to. When we realised what was happening, we started questioning things, and did our best to have these reduced to the level she needed. But due to ‘misunderstandings’ she continued on these drugs, and could barely lift her head up.

After two falls she lost her confidence and was terrified about falling again. Often she was so out of it that all she could say to us was “Help me, help me”. She developed a severe case of PTSD which is not uncommon in elderly people after a fall.

She told us staff would tell her off if she pushed her personal alarm, because she couldn’t do basic things like go to the bathroom by herself. She said she was bullied by some of the staff. We didn’t know what to believe because of her mental state and considered installing cameras in her room.

This was a dark time. It is really difficult when you live hours away, and to make things worse, we had a couple of major cyclones resulting in floods and major damage to roads, which meant that the main highway north was closed due to slips, and the detour made the trip 3 hours each way.

We spoke with senior staff and questioned the medications, her allegations, and were really worried that the more questions we asked, the more risk there was that she would be mistreated, punished for telling on them. It seems that while it is highly illegal, this property did what many do around the country with elderly people, that is to dope residents up so they are less of a bother to deal with.

I did some research and while it doesn’t get talked about so much in New Zealand, perhaps because others like us are afraid of what might happen to our elders, if we complain a lot. This article They Want Docile, from the US, tells a relatable story. It claims that in an average week, nursing facilities in the United States administer antipsychotic drugs to over 179,000 people who do not have diagnoses for which the drugs are approved.

We knew she couldn’t stay there and after many distressing visits, and facing facts about the risks of her having more falls, we had to convince her that she should move to Auckland and permanently live in a rest home.

This song is pretty appropriate. If you have read some of my my older posts, there is a real irony in this whole situation. I had a rocky road with my parents. I left home at the age of 16, and there were times when I wanted nothing to do with them. I remember once spending an evening with them and my mother asking “Are you going to look after us when we get old?” My father added that this was our tradition. My response was “Why should I? You weren’t there for me when I needed you, and you left your parents back in Holland when you were about 30. So much for that tradition.” But whether my morals and ethics came from somewhere else, I strive to be the better person, and to be fair, my mother suffered a lot of psychological abuse under my father and was to afraid to leave him. I aim to be the better man and do the right thing.

This saga with hospitals and rest homes went on for about 5 months, and we finally convinced her that she would need to give up her desire to go back to living alone in her home, and move to a rest home in Auckland so that we would be nearby and able to visit more often.

We started looking and fortunately found a nice place, on the same street as the home of one of my daughters. She duly moved down and into her new home. She continued to be very stressed. She would barely walk, even with a Zimmer Frame. Having been on a heavy regimen of drugs, she was rarely lucid, but we were confident it was the medication. We discussed this with the doctor and Head Nurse, but were very worried that staff would think that her mental state was her normal.

Her rented home had been empty for several months and she was still paying rent. Now that we knew she wasn’t going back, we had to figure out what to do with the contents of a 3 bedroom home full of books, artwork, musical instruments and all the other stuff that comes with a lifetime of collection. We gave notice and then spent the next month racing the clock to empty the house. What a mission that was! We had to be brutal and gave a lot away to charity, especially furniture and appliances.

Then came cleaning which delivered its own little horrors. We had turned the power off in the house, and never checked the deep freezer. It had salmon in it which was like something out of Origin of the Species. It almost walked down the hall and smelled like Hades. Fortunately I had a company van and permission to use it to empty the house, so that kept the costs down.

My brother and I now have heaps of books, my father’s paintings and sculptures, musical instruments (I don’t mind that so much, just adds to my collection, except that my father made a lot of his), decades of correspondence, mostly with family in Holland) and other items that we are still working through what to do with. My office and music room looks a bit like the back room in a second hand shop. The hospice shop has done well out of her DVD collection. It felt bad giving away things that they had appreciated, but we don’t watch DVDs any more.

Although she started coming to grips with her new reality, she was suffering from PTSD. Combining that with the medications, she suffered from nightmares every night, and was horribly confused. She would say “I woke up in a room that looked exactly like my room, but wasn’t.” She would often ring me in the early hours of the morning, telling me she was being held prisoner, and that I had to come and save her. It was so hard to try to settle her down and reassure her, when she felt what she was imagining was real. I felt a sense of dread each time the phone would wake me up in the night.

It took a couple of months for us to get through to her that these dreams, which came with black clouds all around, were in fact dreams, and we started getting her to a point that she realised they were not real. Sometimes she was able to tell herself, in a lucid dreaming moment, that what she was seeing was not real, and tell it to go away, but most of the time, she didn’t know she was dreaming. Eventually we worked out that the dreams themselves were being caused or at least exacerbated by the antipsychotic drugs, and as we got those sorted, things improved.

Then her body started swelling up. She became so big that she looked like she was going to explode. It was terribly painful. Her clothes didn’t fit her and she started getting ulcers and sores. We were called in by the doctor who told us she thought she had Lewy Body Dementia and was also suffering from organ failure, particularly her heart and kidneys. She told us that our mother probably had a month to a year to live.

She was sent to hospital and we learned that she had 7 big sores that had not been treated, but as they nursed her over several weeks, and managed her fluids, they were able to bring her back to a point where she was again lucid and getting back to her old weight. A physio started working with her and she started feeling a little more confident.

Back to the rest home and she was doing fairly well. The occasion of her 95th birthday arrived and we had a nice party for her. Sadly she only has a few friends because she has outlived most of them, but it was a happy day for all of us.

All of this took place over a year or so, and was so stressful and tiring that other than work, I didn’t have the energy for writing or any of my ten guitars. Work brought its own pressures. I won’t talk about that right now. While I am very proud of what I achieved, it was the most stressful role I have had. The community I was working in was like a different world, to the nice middle class environment I live in today. But I had also lived rough at times in my youth, and could relate to the situation that many found themselves in through no fault of their own. I tried working four days a week, but all that did was reinforce that I was over it. A couple of months ago, I rang the chair of the board and told her that I had to leave. I helped recruit and onboard my replacement and left.

So that is why my writing faded. I missed it, but couldn’t bring myself to do it. It was very much like my battle with prostate cancer 10 years ago. Oh there are some stories I haven’t shared yet. I’ve been avoiding that topic. It will come. OK, I’m officially back. Thanks for not unsubscribing. Hopefully I will keep you entertained :)