Early Years

Early Years

This stage lasted for a couple of years. Liz could manage to dress herself and take care of her own personal hygiene. She could wash and dry clothes, do simple gardening but needed assistance with cooking and complex tasks like managing finances and using the computer to write emails. Things like planning holidays, managing her social activities and determining the groceries we needed to buy for the week were now too difficult. Both Liz and I overestimated her capability at times.

Learning About Dementia Causes

One of the first things I did, was read through the handouts the doctor gave me and went online to learn more about Dementia and in particular, Younger Onset Alzheimer's disease. Having a basic understanding is useful and helps you filter out some of the nonsense 'helpful' people tell you. However, don't spend too much time studying complex dementia causes, you are not going to be the one finding a cure.

One of the most important things you need to learn is all the things you rely on your partner to do that they won't be able to do in the future. If you are like us, you developed a separation of tasks over the years that you each take personal responsibility for. You need to get your partner to teach you their tasks while they still can. For example, something as simple as doing the washing, what to buy to remove stains, how to separate clothes so colours don't damage whites, what you can't put in the dryer etc. My clothes were straight forward but Liz had things that weren't just jeans and t-shirts.

Sit down together and make a list of what you need to learn and then make time to learn this. For example, recording their passwords, putting contact numbers for their friends in your phone, learning how to dust the house, getting them to teach you how to cook their favourite meals, how to look after their indoor plants etc. There may be a lot for you to learn. Many years ago, when the kids were little, I got retrenched. Liz went back to teaching full time and I stayed home as the 'house husband' for 9 months. I learned a lot at that time but I still had a lot more to learn as Liz's carer.

It wasn't too difficult in the early stages but over time I started to notice the mental load involved in caring for Liz. Having to do all the planning, decision making and emotional management while adjusting to the transition from partner to carer was not easy. My time as a 'house husband' all those years ago meant that I could do most of the things required to manage the house and our lives. I think guys tend to struggle more with this if they have relied on their partner to do nearly all of this for them.

Growing Up

Stephen Covey in his book 'The 7 Habits of Highly Effective People', explains that our progression through life starts with our dependence on others as a child, we then become independent and self-sufficient. The final maturity stage is when we become interdependent and can collaborate with others to achieve more than we can do by ourselves. Alzheimer's seemed to take Liz back through this process. Her ability to collaborate with others decreased early on. As Liz started to lose her memory, she felt embarrassed and lost confidence in interacting with others. She was still able to collaborate with me in things like making dinner, as she felt more secure in my company, and I had gradually learned how to support her. Over time, Liz completely lost her ability to collaborate, then gradually lost her independence and finally became fully dependant on me. Although she was fully dependant on me, Liz always viewed herself as an adult and expected to be treated that way.

Who's Peddling the Bike

We have 3 children and I remember when Stef, our first child was born. At the risk of oversimplifying the process, Pop!......Wahhh!.....life instantly changed for both of us. Number 2 was more work; at number 3 we were outnumbered and out of control. The impact of Alzheimer's was also life changing for both Liz and me but it was a gradual process, not like the sudden shock of a new baby.

I remember hearing a comedian say that having a baby is like both of you being in the Tour de France. Except the mother is peddling the bike and the husband is in the support vehicle beside her, handing her the occasional drink and saying words of encouragement. Bringing up our children was a bit like that. Liz took 11 years off from teaching to raise our children and I went to work. I did what I could when I was home but raising our children over those 11 years was probably 80% Liz and 20% me. However, with Liz's Alzheimer's, I soon realised that I had to be the one peddling the bike. I had a lot of support from family, friends and also from NDIS but it was still 80% me. Just as Liz cared for our young children 24/7 with some help from me, I needed to be there 24/7 for Liz.

Caring for Liz with Alzheimer's over the years was the most important and difficult thing I have ever done. Yes, bringing up our children was equally as important, but it was a shared responsibility with Liz and she played the dominant role.

Liz loved being a mum.

You have Taken Everything from Me

As Liz found certain things more difficult to do, I started to help more. One of the things Liz looked after was all of our finances. She paid all the bills, monitored the joint bank account and kept a manual record of our expenditure. Liz was having a lot of difficulty with this, so I started to help but ended up taking it over. I put most of the bills on direct debit and set up an Excel spreadsheet to track out monthly expenditure by simply downloading a CSV file from the bank. I thought Liz would be happy about this until she said in a frustrated voice, "You've taken everything from me". I heard this comment again with some of my other attempts to help Liz. I didn't fully understand why this was happening at the time, so if you hear similar comments about your attempts to help, consider the following:

Liz was a teacher, liked to be in control, managed our home, was smart and competent. Her Alzheimer's and my attempts at helping did not occur in a vacuum. I needed to take into account her personality, what she enjoyed doing, what gave her a sense of self-worth, our relationship, how far the Alzheimer's had progressed, her current mood and mine etc. Yeah......no wonder I stuffed it up at times. Just do the best you can taking into account some of my thoughts below:

  • As your relationship gradually transitions from you being a partner to a partner/carer, they also have to transition to being someone who realises they need to be cared for. These don't always align.
  • The activities you take on to help are things they have to let go. They may not want to let go of the activity because they enjoy doing it, they don't trust you to do it as well or it supports their sense of self-worth etc.
  • Boredom can be an issue with dementia as what your partner can do diminishes over time. Taking something away from them and not replacing it with another activity just adds to their boredom. We had NDIS support, so I arranged for Liz to do cooking with the NDIS support person each week. This helped to replace some of the activities I had taken over from Liz.

Liz stopped saying, "You have taken everything from me" after a few months. I'm not sure if this was because she now realised she needed help or if she simply forgot that she used to do those activities.

Speaking for Liz

Liz has always been smart and capable of managing her life. As her Alzheimer's progressed, I found I needed to answer for her at times. When someone asked Liz for her date of birth or phone number, there would be a long pause as she couldn't remember what to say. I would then need to step in and say it for her and it made me feel really awkward. I felt like I was an overbearing male when we have always been equals in our relationship. It also became quite ridiculous when Liz needed to confirm her identity to her bank or superannuation fund over the phone. At first, I could write the information down, have the phone on speaker and point to what Liz had to say. She would then read it out to them and this sort of worked. Although I think we sounded like scammers.

I quickly realised that this would not work in the future, so I arranged to have joint access over the phone to all her accounts.

I Needed to Watch Liz do Important Stuff

Unless you see your partner do it, you can't be sure it has happened. E.g. Taking tablets, washing their hands after the toilet, brushing their teeth, putting their safety belt on in the car, picking up their handbag / phone / coat at a cafe etc.

Beware of Toilets in Shopping Centres with 2 doors

Yeah, it's a thing. Large indoor shopping centres with hundreds of shops sometimes have toilets with two entrances at opposite ends. I am waiting outside for Liz, feeling a bit creepy hanging around the women's toilets. Liz doesn't come out. I get worried and ask a women coming out if Liz is in there and describe her. The women goes back in and comes out to say that she is not in there. Then adds "Perhaps she left by the other door?" "OH Crap, there is another door? "Yes, she replies, "it opens on to another section of the shopping centre". At this point you are probably thinking, just call or track her phone. Liz was capable of answering her phone at this time. However, if I called her phone it would ring in her handbag, which I was holding so she wouldn't lose it in the toilet. This also happened in a large roadside convenience stop in the country. Liz ended up anxiously wandering around the car park before I found her.

The obvious solution is to use the disabled toilet if one is available. If I needed to go to the toilet when we were out, I used the disabled toilet and took Liz in with me. If I left her outside she could wander off.

Photo Book

As Liz was having difficulty remembering names, it was suggested I make a photo book containing recent pictures of both family and friends. There are plenty of online providers for this. I looked for group photos that included Liz and typed the names under each photo. Liz really enjoyed looking at this. When people visited, they often looked through the photo book with Liz, so don't leave anyone important out or they may wonder why they haven't been included.

I Don't Forgive Liz

Our house is on just over an acre of land and I am right down the back talking to my neighbour Eric. It is early in the morning and really cold. The storm water pipe from his granny flat is eroding the bank of the creek which is 7 meters below us. We are discussing what to do when I think I hear Liz calling my name. "Did you hear Liz calling out"? "No mate I'm a bit deaf" Eric replies. "Me too" I say. We keep talking and then I hear it again a bit louder. "Oh, its Liz, I better go" I say. "No worries, I'll sort this out" says Eric. I climb back over the post and wire fence, making sure I carefully clear the top wire strand as all blokes do. I walk past the avocado tree, Liz sees my feet in the distance. She calls out "Stuart I just w........" "Hang on I can't hear you". I say. As I reach the oak tree Liz starts talking. "Hang on, wait till I get there, I can't hear you properly" I say again. As I clear the oak tree, Liz finally appears. She is in a pink fluffy dressing gown and UGG boots. Her arms are folded with her hands tucked inside the opposite sleeves for protection against the cold. She looks really cute. I walk right up to her standing on the veranda. Liz is 5'2" and I am 6' but we are exactly the same height with her on the veranda. It feels nice being the same height, so I give her a long hug. "OK, What do you want" I ask. Umm.....Errr....Oh ...Oh... Oh I forget." Liz says with a frustrated tone.

Yeah, sorry, that probably triggers a few things for you.

I don't forgive Liz for this. If I forgive her, it means I think she has done something wrong. I used to forgive her for making mistakes as she didn't make many of them. You know, if she forgot to get me something at the shops or turned up late for something we had organised. I think forgiveness is a finite resource, you can only forgive someone so many times before it runs out. Liz now leaves the lights on, leaves outside doors open, forgets to flush the toilet, loses my things, hides kitchen utensils that I need, takes the TV remote and puts it under the bed etc. Forgiveness no longer works. At some point, and I don't know when it happened, I moved on from forgiveness to just accepting this as the way things are. Acceptance is so much better. Acceptance helps me go with the flow as I am not in control of Liz, I am just trying to help us both get through another day.

Yeah, I know, I can't always do it. I stuff it up when I'm tired or grumpy. I try to swallow the frustration but my tone of voice changes and Liz picks up on this and gets upset. It helps me to put things in perspective at times, to remind myself that, while I am losing the person I love, Liz is losing everything.

Medication

Liz was experiencing anxiety before her diagnosis was finally sorted. Her doctor put her on a low dose of Escitalopram. Yeah, it took me a while to work out how to pronounce it too. Liz stayed on this for a number of years, right through the early stage of her Alzheimer's. Medication definitely improved her quality of life.

My Friends, Our Friends, Liz's Friends, Neighbours

Liz and I had both retired before her Alzheimer's diagnosis. A lot of our social connections were associated with our work. These faded away once we stopped working and we were left with a smaller group of close friends. Liz had always been the social secretary and maintained the 'Our Friends Group'. I now needed to help her do this and later on do this by myself. I don't think I was very good at it. Some of my thoughts and actions below:

  • I got access to Liz's email on my laptop so I could check her messages and help her respond. Later, I just did it all for her. Liz has Facebook and I don't and can't use it. I got my sister and daughter to monitor it for me and they posted messages on it when Liz passed away.
  • I put her important contacts into my phone. I maintained her cheap phone plan even when she could no longer use her phone as it was a backup phone for my password manager and some other accounts. Liz kept the phone in her handbag. It helped me find her handbag by calling it, as she often hid her handbag in the house, as she was worried it would be stolen.
  • I put all our friends birthdays into my calendar on my PC so I wouldn't miss any. Early on I helped Liz manage the writing of the Christmas cards. Finally, I took it over and put the contact details into a table in Word.
  • I don't have many personal friends, so they were easy to manage. It was now more difficult finding time to see them by myself, so I called them more.
  • Catching up with our friends usually involved inviting them over for lunch or dinner. While Liz was still reasonably capable, I would help her plan and cook the meals. When her Alzheimer's progressed, I needed to do it all and I wasn't very confident at it. Going to a restaurant felt awkward. We ended up going to our friends much more than they came to us.
  • Liz's friends were fine when they took the initiative to maintain the relationship. Some friends would come over and take her out for lunch. Other friends would arrange a group catch up and I would drive Liz to the venue. If it was during the day and a long drive, I would just hang around the local Bunnings while Liz had lunch and then take her home. Some friends didn't take the initiative to keep in contact and they drifted away. I don't think they realised that Liz was no longer able to maintain the relationship from her end and they needed to step up. I arranged some catchups with girlfriends at a local café when Liz went into care. Liz was there but I had to do nearly all the talking as she had difficulty following the conversation. Maybe I should have done more to help Liz keep in contact with these people. The Covid lockdown at that time didn't help things.
  • The contact Liz had with friends while doing activities like Quilting and Pilates really only lasted while Liz was able to do those activities.
  • Our world became very small as Liz did not like to travel far and didn't like crowds and noisy places. I said to our family and friends that Liz and I need to live vicariously through their travels, holidays and outings. They sent me pictures and texts of what they were up to and called more regularly. This helped maintain our relationships and Liz enjoyed seeing the pictures and me reading the texts to her. She couldn't talk on the phone very well but she would listen in to me talking on speaker. This was important as we never felt alone.
  • We are lucky to have great neighbours and they really helped both Liz and me. When the wheels were dropping off for me, I could have a chat over the fence or go in next door for a bit to de-stress. If Liz was angry with me, she would go in to the neighbours and they would care for her and bring her back when she settled down. The neighbour across the road found Liz wandering down the road one day and brought her home. One time my daughter Bec was trying to help Liz have a shower. This was always very difficult to do and this time Liz just lost it. I tried to help but I became the enemy too. Liz ran out of the house partly dressed and it was only 12c outside. She was storming around the house and down the drive. I called my neighbour for help and Gayle calmed her down, got her back in the house and dressed in 15 minutes. Our neighbours became a small part but an important part of Liz's care team. They also cared for me, by regularly touching base to see how I was going and inviting me for dinners when Liz passed away.

Family

I didn't expect much from my family. Not because they didn't want to help, because 2 of my adult children (Bec and Adrian) live interstate and Stef lives an hour and 20 minutes' drive away, has 3 young children and works 3 days per week as a teacher. We received a lot more support than I expected and it really made a difference. Bec could work remotely over Starlink. When things started to get difficult caring for Liz in the later years, Bec came and stayed with us for weeks at a time to help care for Liz and support me. She was there in the final month and stayed another 6 weeks to help with the funeral arrangements and care for me. This was so helpful and so much more than I expected. I feel very lucky to have had this wonderful support from Bec.

When we could no longer manage to do babysitting, Stef understood our situation and made other arrangements and her mother-in-law covered extra days. When Liz refused to take her medication, I would call Stef at times and she would try to help over the phone. This sometimes worked as Liz trusted Stef.

My sister Lyn and I look after our 96-year-old mum who is still living in her own home. Liz, Lyn and I would go there every Friday to take shopping to her and care for her. We would then all have lunch together. We have been doing this for many years since my father passed away. This regular contact meant that my sister understood how things were progressing and could provide me with really helpful and timely advice. Lyn has also experienced significant grief in her life and understood what I was going through. Lyn and I have regular contact over the phone. Sometimes, this is just to sort out medical issues for our mum but it all contributes to a strong sense of connection. I never felt that Liz and I were making the Alzheimer's journey on our own.

Liz with Lyn

NDIS

We were allocated an annual NDIS budget for home support, community engagement and an assessment by an Occupational Therapist. Over the 3 years Liz was on the NDIS I never spent more than half the allocated budget. Liz didn't like 'strangers' coming into the house. So, anytime the NDIS person was sick, was isolating with covid or was on annual leave, they could not be replaced. We had 2.5 hours of cleaning per fortnight and carer support twice per week for 3 hours. Carer support increased to 3 times per week for the last 6 months Liz was at home. NDIS support stopped as soon as Liz went into Aged Care.

Some thoughts below:

  • I knew nothing about the NDIS. When I looked for providers, I found a lot of options in the local area but I didn't know how to identify a good one. I made quite a few calls. Some didn't call me back and others sounded like they were working out of their garage. I elected to go with a medium sized not for profit provider. The rates are set so they were not cheaper than any other provider but any profit they made went back into supporting the disability sector. Being a mid-sized provider meant they had a number of staff and increased the possibility of me finding a good match for Liz. I stayed with them for the 3 years as I was happy with their service.
  • Finding a good match for Liz was a bit of a challenge. I think the NDIS mainly focusses on young people, so the initial carers we had were not familiar with Alzheimer's and were a similar age to our children. This was OK for the first year but as Liz's Alzheimer's progressed and her support needs changed, I needed to change carer's. I discussed this with my contact at the providing organisation and she recommended Sue, who was the same age as Liz and who she thought would be a good fit. This worked very well. Previous carers didn't know what to do with Liz when she no longer wanted to do cooking. They would arrive and ask me what to do that day. Sue planned ahead and took Liz to things like Garden World, the Tulip Festival, Cranbourne Botanic Gardens etc. It feels awkward changing carers as it feels like you are sacking a staff member. However, my priority was always what was best for Liz.
  • Experienced carers are a good source of advice and they helped me with strategies to manage Liz's behaviour. They also provided me with emotional support at times as they were the only other adult I spoke to that day.
  • I would always meet the carer outside before they entered the house so I could give them some information on Liz's mood and capacity to participate in what they had planned to do.
  • I found myself building a relationship with the carers over time. They are in your house regularly and we ended up discussing personal things about how I was coping with and caring for Liz. They are not doing this to pry into your affairs, they are trying to gain an understanding of how best to help. This is a much more intimate conversation than the one you would have with a stranger in Kmart. It leads you into asking about them and how they are going and then following up the next time they attend to see if they resolved their problem etc. I think building a strong relationship like this is essential but it can cause some difficulties:
  • I needed to remember that the carer is there for Liz, not me.
  • It made it very hard to change carers when Liz's needs changed.
  • When Liz was having problems with her medication and taking it out on me, one of the carers stood up for me with a comment. I later explained to the carer that she needed to always 'be on Liz's side'. Liz continuing to accept her as a carer was much more important than me copping a bit of verbal abuse.
  • You both build a relationship with the carer which creates a bit of a dilemma when your partner moves into Residential Aged Cared. Sue was genuinely concerned about Liz's and my welfare, so we kept in touch from time to time after the NDIS relationship ended. Sue also came to Liz's funeral which was very kind of her.

Night Lights

I woke up in the middle of the night to the sound of rustling. The bedroom was pitch black. I felt across the bed and it was warm but Liz wasn't there. "Are you OK" I called out. "I don't know where I am" Liz replied. "Hang on I'll turn on the bedside lamp". Liz then appeared from the walk-in robe. She had been in there for a while and was frightened. She had taken a wrong turn on the way to the ensuite and couldn't find her way out. Our bedroom is very dark at night and I use a torch to navigate around the end of the bed, on my way to the ensuite. I adopted this approach after stubbing my toe really hard on the end of the brass bed. Liz always seemed to be able to find her way in the dark but things had obviously changed now. We needed some sort of light for her and I knew a torch wouldn't work as she would forget to turn it on.

I tried one of the kid's old night lights but we both didn't like the light being on all the time. So, I needed a motion sensor light for the bedroom but I could use a permanent light in the ensuite, as it wouldn't shine into the bedroom. Off to Bunnings. I got a battery-operated motion sensor light for the bedroom. As it only came on at night when Liz got out of bed, the batteries lasted for a couple of months. In the ensuite, I got a motion sensor light that plugs in to the mains. It stays on all the time but gets brighter when it senses motion and turns off when it gets light in the morning. This worked but we found both lights were too bright. I solved this by covering the lights but not the motion sensors, with 4 layers of blue cellophane. It looked a bit crappy but worked well.

I took the battery-operated motion sensor light with us when we went on holidays, so Liz could find her way to the toilet at night.

Stop Telling Me what to Do

As Liz's Alzheimer's progressed, I needed to modify how I cared for her. This sounds obvious but I found it difficult. I thought it would just be a case of adjusting what I needed to do for her and what I expected Liz to be able to do for herself. That was when I ran headfirst into 'Stop telling me what to do. I know, I'm not stupid". Hmm...clearly, I was doing something wrong. I had got past the "You've taken everything from me" stage and now I have ended up here. I finally figured it out.

I had learnt my caring skills looking after our children. I had done the usual things, you know, bathing and getting them dressed when they were little. Later on, getting them ready to go to school etc. I could tell them what they needed to do and they would usually comply. The problem was, I was taking the same approach with Liz but she did not see herself as a child. Liz was an adult and wanted to be treated as an adult, so my parenting approach to caring for her was offending her. I change my approach from telling or directing to one of asking questions. Instead of saying "Here's your jumper to take as it might get cold" I changed to. "Would you like to take the pink jumper or the blue one"? Holding up both jumpers for her to make a choice. She now feels she has some control over how she looks. Would you like to go to the local café or the one in Berwick? Etc. I didn't need to take this approach for everything. I just needed to do it enough, so it didn't feel like I was telling her what to do all the time.

Just like the "You've taken everything from me" issue, this stage also passed as the Alzheimer's progressed.

Consent and Dementia

Liz saying "Stop telling me what to do" made me wonder about the relationship between consent and dementia. Particularly if someone needed to do something for their own health, like have a shower or take medication but was refusing to do it. So, let's start off with a definition:

Consent is the free, voluntary, and enthusiastic agreement to engage in an activity. It must be clear, ongoing, and can be withdrawn at any time, even if consent was given previously or for a different activity. Silence, being asleep, or being unable to communicate effectively do not count as consent.

OK, so the topic is obviously much broader than just sexual consent and consent is actually a fundamental human right. Even though someone has dementia and loses capacity to make good decisions, we still need to seek their consent to engage in activities. Liz always saw herself as an independent adult right through her dementia journey and this made caring for her difficult at times. If she didn't consent to a shower, she didn't have one. I couldn't pick her up and put her in the bath like I could with a child. Sometimes Liz would agree to do something but when we got there, she wanted to go home and had no memory of agreeing to do it.

The need to gain consent became an essential part of the caring process. Often gaining consent took longer than having the shower or taking the medication. I found it extremely frustrating as I always had Liz's best interests at heart but she would not let me help her at times. My inability to gain consent to undertake essential activities was one of the main things that caused me stress in caring for Liz.

I was not the only one Feeling Grief

When I think back on my journey caring for Liz, I think I was overwhelmed at times by both the difficulty of the task and my feelings of grief. I was aware that my adult children were also grieving the gradual loss of their mum but I don't think I was there for them as much as I could have been. I didn't seem to have any emotional reserves to spare after caring for Liz. My children supported me much more than I supported them.

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