Alzheimers. It’s just a word. A word that years ago would have drifted in one ear and out the other without a second thought. Now my entire body reacts when I hear it.
There are said to be seven stages of grief. I believe these to be true. I experienced all seven when my son died. Shock & denial, pain & guilt, anger & bargaining, depression, the upward turn, reconstruction & working through and finally acceptance & hope. When you lose someone to Alzheimers you go through these seven stages up to four times. Firstly when they are diagnosed with the disease. You are faced with the reality that life will never be the same. You have no choice but to hold on tightly as you watch the person you love so dearly disappear right in front of your eyes. The second stage is when they forget you. This is a hard pill to swallow. The person who birthed me and chose my name no longer knows what that name is. The third stage is when/ if you decide that the person with the disease can no longer stay in the family home. And lastly when the persons physical life ends. Right now I’m in-between stage two & three. Although we feel it’s a bit early, the subject of a nursing home has started to come up in conversation, and it hurts.
My mum has never been a picture of health. She’s lived with type two diabetes, high cholesterol & blood pressure for as long as I can remember. Some of my most ingrained memories of my mum are her standing in the corner of the kitchen sorting her boxes & boxes of tablets in to little containers. There were so many tablets. I always had this sense that she liked to be sick. It’s pretty much all she talked about. As though it were her identity. There was always something new wrong with her. Always a self diagnosed condition that would suddenly disappear when a new ailment arose. It was constant. She believed she would die when she was sixty. That was something she told us regularly that a doctor had told her. I never knew her to be any different. I do believe that she may have some sort of undiagnosed disorder in regards to all of this.
Back in 2012 when my mum was 58 and Chad was a baby I became really unwell. I was sick for about 12 weeks with the some sort of flu like virus. The first day I was really unwell I rang and asked my mum to come and help me with the kids the following day. I could tell on the phone that she didn’t want to. My mum then went MIA (missing in action) for ten weeks. I was too sick to follow up or beg for help. My husband would come home from work every two hours to lift the baby out of the bassinet and put him on me so I could feed him, then fed & changed our toddler, put the baby back down and went back to work. A friend did the school run for me, and a lovely lady from our church cooked meals and dropped them over most nights.
It wasn’t that unusual for my mum to drop off the grid to me like this. It had just never lasted this long. Sometimes she was very hands on and involved, other times she seemed to retreat back to her house in the hills and avoid contact. I never really understood why. I assume she felt overwhelmed sometimes. I could read her mood fairly well and just went with it. I enjoyed and soaked up the times when she seemed alive and wanted to connect and when she retreated I just got on with my life. The reason I mention this particular event is because it’s the first time it ever occurred to me that there may be something wrong with my mums memory. Here is why.
My mum was a regular shopper. She loved to shop. She lived in the Adelaide Hills and came down to the suburbs to shop at least once a week. Usually on a Wednesday. She would always ring me before she left home to arrange a time for me to meet her at the shopping centre for lunch. My initial thoughts were that my mum was avoiding me because she didn’t want to help me out with the kids. I was sick & hurt. I remember my dad rang me one day when I was unwell & I asked him why mum hadn’t come to see or help me. He said that she had told him she was sick & that she hadn’t left the house for weeks. My dad ran his own full time business so was out all day everyday. So whatever mum told him when he got home he took as the truth. He had no idea what she got up to during the day and had no reason to question her. So I thought maybe she had actually been sick too.
Until….. the friend who was doing the school run for me happened to mention seeing my mum at the shops. THEN a week later another friend said her husband saw mum at the massage place at the shops and got chatting to her. Then a third friend mentioned seeing my mum shopping. These were all on three separate days.
When I was feeling better I went to the shopping centre. I was walking with my head down and just like from the scene from a movie I nearly collided with the person walking towards me. To my shock it was my mum. She actually looked more shocked than me and quickly told me that it was the first time she’d been out of the house and that she was ‘just about to ring me’. I was stunned. I didn’t question her. I walked with her to the foodcourt, had lunch and tried to shake off the confused and awful feeling I had in my stomach.
Not long after this I asked my Mother in-law about dementia. She is a nurse who works with dementia patients. She didn’t seem to think my mum had any memory problems. It’s a strange thing to realise then that I was searching for some logical answer as to why my mum had ignored me for all of that time. I was actually hoping it was something out of her control like her memory. Yet now I would give anything for her memory to be intact and her to flat out say “don’t call me, I’ll call you.”
For the next twelve months things went back to normal with mum. During that time though I made the decision to leave the church I had been raised in. That’s a whole other story but there was nothing casual about doing it. It caused a lot of hurt & devastation for all involved. We had to be cut off from people and I have no doubt it caused my parents a certain level of shame and disappointment. My dad was very sad. Surprisingly though my mum seemed to take it fairly well. To my face anyway. She seemed to reach out more, spend more time talking to me and having deep conversations. It was as if we both felt more free to be open with one another. I felt like I was actually starting to get to know her. I’d moved out of home at sixteen to work and study in the city. Because of travelling distance to my parents home in the hills I moved in to a little flat joined to my Opa’s house to be closer to the city. I was married at eighteen and a mum at twenty. So these months of spending extra time talking with my mum were the best of my life with her. I felt like a grown up. Like her friend. By this point Chad was nearly two and I started holding out hope that when he was in kindergarten or school that mum and I would go out lunching and talking and have quality one on one time together. It was all so exciting to me.
After she turned sixty everything got weird again. Firstly she forgot my birthday. Like completely forgot. My dad was working away and she would always remind him and they’d both call me etc. But this birthday nothing. I actually started to question if it even was my birthday. I thought maybe I had the dates wrong! I’m an only child, I knew that work cover had to be paid on the first of the month for their business and my birthday is on the first of the month. There is no way she didn’t know that date.
The next day I got a very apologetic phone call from my dad. He was away and didn’t realise the date. I also got a phone call from mum after that but she was not sorry. She was just annoyed that she’d been told to phone me from dad. A few days later my parents took me out for breakfast for my birthday. Mum tossed me a card over the table. There was definitely a vibe there. I could sense she was not happy with me. The thing I loved most about my birthday card from mum and dad was that it was always one of those soppy daughter ones. They weren’t overly affectionate people with words so I would love getting these cards & kept them all. This birthday was different. The card was generic and literally said Happy Birthday on the inside. It was at this point I knew the mum I was getting to know was gone. Like I said earlier her moods did go up and down but I could sense this time that it was different.
From this point on her memory got worse. It started out subtle. Missplacing tv controls and other household items. It wasn’t really until Mum started making mistakes in the business that it became a real problem. She was in charge of paying bills and wages. Some of the employees started going to dad weekly saying that their wages and been paid in to super and their super in to wages etc. Dad never said anything to mum. He fixed it up himself. It wasn’t until a company that Dad had dealt with for years rang dad and said an invoice for $20,000 had been paid twice that Dad removed mum from the office. Mum didn’t mind though, she’d always hated doing it. I often said to dad I think that we need to take mum to the doctor but he didn’t want to at the time. He didn’t think it was that bad. It slowly got worse over the next 12 to 18 months. More things went missing, she would burn stuff on the stove regularly. Quite a few times I walked in to a smoke filled kitchen while mum was outside wondering around in the garden. She also started sleeping more than usual. Dad still worked away a lot at that stage & she would ring him because she’d tried to drive somewhere and was on the side of the road lost. We took her car keys away after that. Still dad wasn’t ready to take her to the doctor.
I spoke to anyone and everyone I could that knew anything about Alzheimers. I did lots of research and was convinced that was what she had. Her dad had had it too, however he was in his late seventies when he was diagnosed. I got to the point where I gave up trying to get mum to the doctor. Dad just wasn’t ready to face it and mum blatantly refused to get in the car and let me take her. So I let it go…… for a whole week.
Exactly one week later my dad rang me one evening really distressed. He said he couldn’t take it anymore. He’d asked mum to make a tuna mornay for dinner (something that was simple and she used to know how to do). He’d come home that night to a casserole dish in the oven filled with uncooked macaroni floating in milk!! That was the last straw for him. He then asked if I could book an appointment to see a doctor. So I did.
At the appointment the doctor asked mum some questions which she couldn’t answer correctly. General things like ‘where do you live?’ or ‘what’s your date of birth’. He came to the conclusion that she had early onset alzheimers and gave us a referral to a specialist. We had to wait approximately six weeks to get in to see the specialist. In the meantime the doctor told us to get all legal affairs in order before mum was officially diagnosed. So we consulted a lawyer and had an updated will put in place and made myself & dad mums joint enduring power or attorney. As once she was diagnosed she would no longer be able to sign for herself. I’m so glad we did that because there has been quite a few times I’ve had to step in and sign on her behalf since then so I’m not sure what would have happened if we didn’t get that sorted out before.
By this point I was already going up to their house in the hills two days a week while my children were at school. I was taking care of the basics, cooking, cleaning & most importantly sorting out the administrative side of the business. I had another family friend come in and help me with the office. It took us six months to fix everything. We could actually see at what point the confusion had started for mum while going through the books. We found boxes with “final notices” from the tax office that were months old and had been ignored. We did thankfully manage to rectify everything.
Once mum was formally diagnosed by the specialist she was put on a medication called aricept. It doesn’t stop it or reverse the disease. It mearly slows it down in the early stages. I did notice a slight improvement after she was on it for a few weeks. But still she slowly declined.
Dad also decided that it was time to put the family property on the market. They had lived there for around twenty six years at that point. It took two years for the property to sell. They now live in their house near the beach, approximately two hours away from me. I spent those two years going up there every week, sorting, packing, discarding but mostly watching my mum disappear. It was a slow but sure process. The first major thing that hit me after her diagnosis was when I realised she didn’t know my kids names anymore. We were in the car and I was talking about something that Stella had done. I could just tell that she was blank. I asked “do you know who Stella is?” she said “Stella, Stella, um I think I’ve heard that before”. It was like a punch in the stomach. Then it was not recognising more and more people she’d known her whole life. Forgetting their names was one thing but not recognising them in person was so strange to watch. Then she no longer knew who’s house she was in when she was at home.
Her personality changed dramatically. She would get very moody very quickly. She even had little outbursts of violence but only towards me at first. She’s thrown things at me, tired to kick me & she actually managed to hit me in the head once. To me there never seems to be any logical reason for it but to her there must be. There was one time she grabbed Chad around the throat which really frightened me and him!! My kids do an amazing job at dealing with her considering. They seem to be able to read her moods fairly well, and they acknowledge that she doesn’t mean it. That she can’t control what she says or does. They also seem to know how to steer the conversation in to something that makes her happy when she gets agitated. Isla struggles the most as she knew the old Grandma and they got along really well.
The hardest one for me was when I realised she no longer knew who I was. It was bound to happen at some point and I thought I was prepared. But I don’t think you ever can be. I thought the moment I realised would be this dramatic, pivotal moment for me, but honestly I don’t know when that moment was. Just one day I could tell she didn’t know who I was anymore. I knew in my heart, there was nothingness in her eyes when she looked at me.
Because mum was under 65 when she was diagnosed she was able to get assistance under the National Disability Insurance Scheme (NDIS) here in Australia. This took us two years to organise after her diagnosis. She was actually assessed the day before she turned 65. My recommendation to anyone in this situation is to get assessed and signed up with NDIS asap. It’s better to have it all there ready and waiting to go then to get to the point where it’s really needed, but you have to wait for all the formalities to be done. My dad held off at first because he didn’t feel she was bad enough that he needed help straight away (even though she was but it took dad longer to accept where things were at). So by the time we actually needed assistance we had to wait for all of the paperwork and assessments to be done. All that said though the NDIS have been amazing at providing assistance. Mum is able to have a carer with her during the day Monday to Friday while my dad is at work. They also have someone to clean the house once a week and to cook a few meals. It’s such a help to my dad. It means that during the week he can live a relatively normal life being free to work and come home to a meal and a tidy house. As things progress dad will obviously need more assistance. He does struggle on the weekends as it’s hard for him to go out the way he would like to. Mum doesn’t want to go anywhere or do anything and when you do take her out it is sadly like dealing with a child. She walks incredibly slowly, wanders off if you don’t watch her the entire time and also has little outbursts. It’s difficult and very isolating. My dad is an absolute hero with her though. They’ve been married for 45 years and he often says “I promised to take care of her for better or worse”. There are days that she asks my dad “where’s Tony?” – He is Tony. He is the only person she asks about outside of her childhood. Watching footage of her childhood hometown or putting Elvis music on calms her down almost immediately. Isla’s learnt most of Elvis’s songs and has been known to start singing them to mum when she gets upset and I can’t get the CD player working quickly enough for her.
There is no cure for my mums disease. She will never recover from this, and sadly she’ll only get worse. I’ve spent years trying to change this story. Desperate to stop the inevitable, but mostly I wanted to change my relationship with her. I had this idyllic picture in my head of how it was meant to look. How I wanted her to behave and respond. But that was never my story to write. It was hers. It’s taken years of processing, maturing and therapy, but I now know she is the perfect mother for me. She has and continues to teach me everything I need to know and feel to write my own story. Life doesn’t happen to us, it happens for us. Sometimes situations arise and send us on a path we never desired to go on, but I believe we are all born with a purpose and destination and if it weren’t for the storms in our lives we’d never be able to grow in to our full potential.