Middle Years

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Liz was now totally dependent on my care. She could no longer cook or do basic household chores. She enjoyed raking up leaves and spent hours each day sorting, packing and unpacking her belongings in the house. I could take Liz out each day for a hot chocolate and we also went for a walk nearly every day. Liz could no longer follow TV programs or read anything but very short messages. Liz did not like travelling too far from home but enjoyed going to the local shops and parks. I took Liz to Pilates each week and a friend in the class brought her home. While she was often stressed and anxious we were still able to enjoy each other's company and live relatively well.

Groundhog Day

I'm not sure if you have seen the movie but my world is getting smaller and smaller and my life now feels a bit like 'Groundhog Day'. It seems like I am living the same day over and over, with the same questions and the same problems. I try different solutions to the problems but none of them work and I am the only one at home who can remember what happened yesterday.

Be On Their Side

Years ago, I worked in a government employment service dealing with the long term unemployed. I was surprised to hear a few of them saying they didn't want a job. One of the more experienced staff pointed out they say this to maintain their self-esteem. They have been rejected by employers so many times that they need to protect themselves from sliding into depression. Saying they don't want a job is a way of coping with the constant rejection.

I needed to be aware of this when I was interacting with Liz. I think at times she may have denied doing or saying something as a way of protecting herself. The alternative of having to admit she was frequently making mistakes every day would be horrible for her and potentially undermine her mental health.

My daughter Bec is a Social Worker and expanded on what I have just said with the following advice. Bec said "You need to be on her side". It's not about me thinking I am on her side, it is about Liz believing I am on her side. For example: Frequently correcting someone with dementia is not being 'on their side'. If Liz says its Tuesday when it is Wednesday, so what. If Liz makes up a story about something that hasn't happened, it doesn't matter. If she thinks there are strangers in the house that are going to kill her, sure, correct that but 99% of their confusion doesn't need correcting. Trying to help by telling Liz what to do did not make her feel like I was on her side, she just saw me as bossy. I thought about how I interacted with Liz and identified behaviours I needed to change so that Liz would know I was on her side. How Liz felt about me directly impacted her level of trust and her willingness to let me help her with things like getting changed and having showers etc.

Bec came to stay with us when she could to help care for Liz and keep me sane.

Apparently Colours Matter

Liz had reached a point where I needed to help her choose clothes to get dressed. I remember going into our walk-in robe and being overwhelmed. My side of the walk-in robe just had blue, grey and black pants, shorts, t shirts and windcheaters. Liz's side, had long dresses, shorter dresses, long skirts, shorter skirts, long pants, ¾ length pants, shorts, short sleeve t-shirts, long sleeve t-shirts, singlets, warm jumpers, cool jumpers, warm cardigans, cool cardigans, thermals etc. They were not just blue, grey and black. There were all different colours, stripes, spots, swirls, different coloured writing etc. and apparently colours matter. Somehow Liz understands all of this and has really good taste, I don't. I am fussy but I have bad taste, so it takes me a long time to choose something that doesn't look very good. I had no idea what to do.

Fortunately, Liz still had some capacity to show me what worked. I took pictures of Liz wearing these outfits and copied the pictures onto an A4 page which I blu tacked to the walk-in robe doorway. This helped but the pictures didn't show the multiple layers Liz had on underneath to keep her warm. I'm sorry to say that I ended up dressing Liz like me, jeans, t-shirt and jumper with a down jacket for the cold.

The Weekly Food Shop Became Difficult

Liz and I nearly always did the food shopping together and we continued this right through the early stages of her Alzheimer's. It was something we could still do together and we both enjoyed it. Sometimes we would go for a coffee first. However, as her Alzheimer's progressed the shopping started to become a source of conflict. Liz was always in charge of the shopping as she planned the meals for the week and knew what to buy. As I was now doing all the cooking, I needed to take more control over the shopping.

This was OK at first but it started to cause more and more conflict between us. Liz started to wander off and come back with arms full of shopping that we didn't need. It was usually stuff that was on sale. I would ask her to put it back but she didn't know which aisle she got it from. One day Liz put a box of herbal tea in the trolley and I told her to put it back because we didn't need it. We had a cupboard full of tea at home from previous unnecessary purchases. Liz got quite upset and stormed off. I put the tea back, it was on sale for $2.30. I should have just let her buy it. After all, half of our money is hers.

I kept shopping for a bit and then started looking for Liz. I couldn't find her. I'm walking around Coles with the trolley, looking down every aisle but she is nowhere to be found. I start stressing out that she has left the shop. I ask one of the Coles staff who is filling the shelves to watch the trolley for a minute and I run out to check the car. Liz isn't there. I come back and Liz appears. I asked her where she went. She said she was hiding down the end of each aisle and watching me. Stressing me out like that seemed to have given her some satisfaction, as her anger had diminished. We then checked out and went home.

OK, so what did I do. The answers are obvious but this was one of the last collaborative activities that we could do together. It wasn't just a chore, it was time we spent together thinking about what we were going to eat for the week, looking for sales, buying some treats etc. We had enjoyed each other's company doing it for years and now it would stop. Just another one of those things you take for granted until Alzheimer's takes them away.

I tried using NDIS to take Liz shopping as I thought she might enjoy it with them. This didn't work as they ran into the same difficulties as me. I could have just shopped online and had it delivered but I like to choose our vegetables. Instead, I did the shopping while the NDIS carer looked after Liz. It gave me a break from my caring role and got me out of the house.

Never underestimate the power of a hug

The day started off well but ended up badly after Liz refused to eat lunch at our weekly visit to my 96 year old mum and demanded to be taken straight home. We are now standing in the kitchen at home under the glare of the fluorescent lights and having a weird conversation. It's not an argument as it's making no sense. Just an irrational Alzheimer's moment where I am clearly in trouble but have no idea why. This results in me being frustrated, my tone of voice changing and Liz accusing me of shouting at her. I finally do the sensible thing and walk away. About 10 minutes later I return to the kitchen to find Liz leaning on the bench and quietly crying. I feel like an arsehole. I put my arms out and walk towards her, Liz turns, puts her arms out and we hug until she stops crying a few minutes later. This resets things for both of us and the remainder of the night is ok.

When you think about it, trying to explain to someone who has Alzheimer's that they are confused and shouldn't be upset with you, is just a waste of time. It usually makes things worse. Saying sorry, even if it wasn't your fault, lasts a few seconds but is quickly forgotten. Saying sorry can also be a bit of a "you win, I lose statement", which is a bit hard to swallow when you haven't done anything wrong. A genuine hug can last as long as it needs to, it is intimate and connects at a deeper emotional level. There is no winner or loser and it is unlikely to be misinterpreted. You just have to get the timing right to offer the hug.

Forget Sleeping In

I kept staying up late after Liz went to bed just to have a bit of a break, watch some TV and destress. The trouble was that I needed to get up as soon as Liz got up. She couldn't find her clothes, get herself dressed or work out how to turn on the heater without my support. This just contributed to me feeling tired all the time.

Simplify Everything

As Liz's dementia progressed, my life became very busy. I was trying to do everything I used to do, what Liz used to do and care for Liz at the same time. You don't get given extra time to do this, so I needed to make some changes. That included cutting some corners and even giving up some things I liked. Here are some of the things I did:

• Watched less TV and replaced the TV with the radio at times, so I could keep working while listening.

• Closed our Self-Managed Super fund and rolled it over to Australian Super, so there was much less work involved.

• Batch cooked meals and froze them for later.

• As I was now responsible for all of Liz's passwords and mine, I began using a password manager to make this easier.

• It was winter so I washed the bed sheets every 2 weeks instead of every week.

• Organised a cleaner through NDIS to come in every 2 weeks to clean the floors, showers and toilets.

• Arranged for Liz to do cooking with the NDIS support person. This only worked for a while and then Liz became annoyed with the NDIS worker. Liz doesn't like being told what to do but as her dementia progressed, she needed more guidance to do the cooking. It reached a point where Liz was clearly unhappy doing that activity, so we stopped.

• With the help of my daughter Bec, simplified Liz's wardrobe and put things that Liz wasn't going to be wearing in containers under the bed. Liz also had 4 separate chests of drawers. So, I put a sticky label on each drawer so I could see what was in there without having to open each one to find what I was looking for.

• It was really difficult to get Liz to have a shower at times. So, I didn't fight over it, Liz just had less showers and we used wet wipes to make sure she didn't get any urinary tract infections.

• Significantly reduced my vegetable garden.

• Went out for dinner less often and had less friends over for dinner.

• Reduced babysitting our grandchildren as Liz couldn't cope with the long days and travel involved. Our daughter Stefanie lives 1hr and 20minutes away from us.

• Our other daughter Bec came and stayed with us for weeks at a time and helped with the cooking, dressing, showering etc and kept me sane. This was a significant sacrifice by Bec as she was away from her partner in Perth but able to work remotely using Starlink.

• Put off maintenance jobs around the house and garden e.g. painting, getting trees removed, fixing the verandah etc.

• Washed the car 4 times in a year. Its silver so didn't look too dirty.

• Put all the bills on Direct Debit.

• Sold the 4WD and Goldstream Camper we bought for our retirement. Setting up the camper and navigating the caravan park toilets and showers was just going to be too difficult. We went to Noosa for a month in the year Liz was diagnosed and stayed in an Airbnb and we did one other interstate trip. I booked to go back to Noosa the next year but had to cancel as Liz's Alzheimer's had progressed too far.

• Downloaded an App called Anylist on my phone that enabled me to easily record the weekly grocery shopping I required. It became a checklist of what I needed to consider buying and I even arranged the items in the order of the aisles in the local Coles where I shopped. Coles then rearranged the aisles -- Bastards!

• I have to cook by numbers as I have no natural talent for it. I made a recipe book with all our favourite recipes and very clear instructions. I did this in Word so I could edit it but printed it and put the recipes in a book with plastic sleeves. Yeah, I guess I'm old school and prefer to use a book than a Notebook or PC. 3 years later and I am still using it. Each time Bec comes to stay we try to perfect a new recipe for the book. Our fried rice is still only a 6 out of 10, but we haven't given up.

• Liz would never buy a microwave as she was very health conscious and not convinced they were safe. My daughter Bec was staying in her caravan in the driveway and there were times when she reheated meals for us in her microwave. I realised how convenient this was, especially now that I was making bulk meals in advance. It took quite a while for Bec to convince me to buy one, as I was worried it was going to upset Liz. I finally bought one and left it hidden in the car. Bec and I waited for Liz to go to bed and then sorted out where to put it in the kitchen. This involved relocating the toaster and removing a whole lot of things Liz had accumulated in the corner of the kitchen bench. We both went off to bed a bit worried about how Liz would react in the morning. I even rehearsed what I was going to say before I went to sleep.

The next morning Bec and I were standing in the kitchen when Liz walked in. She walked straight over to the corner of the bench with the microwave, looked at it and at the bench and said, "Oh, that looks much better" then walked out. I remember one of us saying, "Wow, that went so much better than I expected". It turned out the microwave was also great for reheating Liz's cups of herbal tea or hot chocolate, as she often forgot to drink them.

The Thing I Stuffed Up the Most

Me, "Did you move the remote?" Liz, "No" Me, "I put it on the couch. Not the big one for the TV, the small one for the Firestick?" Liz, "I haven't seen it". Me, "I put it on the couch, went out to feed the chooks, came back and now it's gone" Liz, "Well I haven't taken it" Me, "Well no one else has been here" Liz getting upset, "Why do you always blame me". "I'm not blaming you, I just want to find it" I say. I look between the cushions on the couch, it's not there. I turn my phone light on and look under the couch. Whoa, masses of fluff under there but no remote. Liz is holding her handbag. "Can I look in your handbag" I ask. "No", she says, clearly still upset with me. I continue looking in some obvious spots where Liz may have put it. While I am doing this Liz leaves the room. I see her handbag on the bench and quickly go over and have a look in it. It's not there. Crap! It's somewhere else in the house. Over the next 4 days I spent a lot of time looking for it. I was thinking I would need to buy another one when Liz walked into the family room with it in her hand.

It took me too long to realise that Liz no longer had a memory. The conversation above was repeated for my missing toothbrush, potato peeler, measuring spoons, new bras we bought her etc. It was pointless putting pressure on Liz to answer questions about the past. I don't know why, I just kept doing it. All it ever did was upset Liz. It literally never worked. There wasn't one time when Liz said for example "Oh, I put that in the ensuite on the bench".

Do you do a good job?

I remember watching a video where people who were caring for their partners with dementia were asked, "Do you do a good job"? One woman said, "I do a good job sometimes". I thought ...yeah, that is probably the answer I would give. Then I thought about it again that night and reflected on the fact that professional tennis players don't always do a good job. They double fault, have unforced errors and lose games they should have won. Yeah, I know their standard is very high but they usually have a natural talent and passion for tennis and train all their lives to hit a ball. Caring for someone with dementia is so much more complex than hitting a ball and I was never trained for it. I also don't have a natural talent or passion for it. I think "Do you do a good job" is the wrong question. It should be something like "Is the person you are caring for better off because of what you do for them"? If the answer is yes, then you are making a positive difference to their lives. Liz would be in residential care without my support and she is much happier at home with me at this stage.

Who Do You Blame?

There are now 3 things in our relationship, me, Liz and Alzheimer's. It's not Liz's Alzheimer's, it's our Alzheimer's. It impacts both of us and we are both trying to manage it as best we can. It helps me to think like this, so when things turn to crap, I don't blame Liz, I don't blame me, I blame Alzheimer's.

Don't sweat the little stuff

Liz spent hours packing, unpacking and repacking things. She was doing this on the floor in our bedroom and getting cold and a sore back from hours bending forward. I tried to distract her from packing things at first but it was not successful. I now see it gave her something to do throughout the day as she rediscovers new things she packed an hour ago. So, I relocated Liz and all her items to the family room where it was warm and she could sit on the couch and not hurt her back. I am in that room a lot too, which is helpful for our relationship. The room looked like a tip and there was stuff all over the couch, coffee table, kitchen table and bench. My sister said to me a long time ago, "Don't sweat the little stuff" it was great advice. So what if the place looks like a tip, Liz's happiness is more important.

Anticipating Problems is Better Than Fixing Problems

• I put a waterproof sheet on the bed over the electric blanket but under the mattress protector. I can wash the mattress protector if I have to, and Liz doesn't know the waterproof sheet is there, as she probably wouldn't agree to it. Yeah, you must be a bit sneaky to avoid conflict at times. (In the end Liz never needed it)

• I was cutting up the vegetables for dinner. Liz was not in a good mood and she came over to where I was standing. She watched me for a bit and then leaned over the bench and took a sharp knife from the knife block. I turned towards her and she pretended to stab me in the stomach with the knife. It shocked me as Liz had never done anything like that to me before. I talked to the family about it and they said I should hide the sharp knives, just in case. I only really needed to use 2 sharp knives, so I hid the rest and put the 2 I needed in a high cupboard in the kitchen where Liz could not see them. I maintained this approach until Liz went into care.

• Liz would constantly hide her handbag in case someone stole it. I tried to get her to keep her phone in her handbag so I could call it and track the handbag down by following the ring tone. You could probably use an AirTag for this.

• Every time I went into the garden or went for a shower and Liz was dozing on the couch, I had a written note that I left beside Liz so she would know where I was. It relied on her reading it, so it didn't always work.

• Liz kept hiding her glasses and we couldn't find them, sometimes for days. So, I had a spare set of glasses and sunglasses made and hid them.

• I always kept the front door and car keys in my pocket. We had the type of door locks that required a key, so I could stop Liz from wandering out the front door when I was in the back garden.

• I scanned all important documents and kept the originals in the safe.

• I always held her hand when we crossed roads or were in a busy carpark etc.

• I kept a spare set of clothes in the car, wet wipes and pull-up pants.

• I checked the temperature of food and drinks after she burnt her tongue on a really hot take away hot chocolate.

• I put Liz's credit cards, Medicare card, Myki card etc in the safe and gave her cash when she went out with friends. I always asked her friends to help Liz pay as she often didn't remember what she had ordered for lunch.

• I kept her ID in my wallet and put her medication up high in a cupboard so she couldn't find it.

• Liz became very possessive of things in the house and started to hide them away to stop me from using them. Liz wouldn't let me use her oven mitts, so I bought my own pair. Then she took the measuring spoons and silicone scrapers away. I was doing all the cooking but I didn't know things had been hidden away until I needed them. It became very frustrating. I had made a recipe book of our favourite meals with Liz but Liz decided it was her book and took it away. I think this might have been a reaction to me taking over the kitchen, as Liz saw that as her domain. This broadened out over time and Liz started packing her clothes into bags and hiding them under the bed and then lots of other things as well.

When I looked around the house, I realised Liz had bought just about everything I could see, except my coffee machine, the microwave and the TV. Liz had made our house into a home with all the ornaments, decorations, pictures and furniture. We bought them together but they were Liz's ideas for the house. One night as Liz was about to cart something else off to hide in a bedroom, I asked her to look around the family room and kitchen and tell me what was mine. She stopped, did a careful 360 degree look around the room, then looked me in the eye and said, "Your glasses".

OK, so what did I do. I'm not joking, the only thing that stopped Liz hiding important things was for me to hide them first. Anywhere up high worked as Liz was not very tall. Just don't forget where you have hidden them. Yeah, I did forget some, so I wrote the location of important things in an app on my phone. I also put sticky labels with my name on things that I needed that Liz might take.

I Don't Know Much About Bras

Liz weighed 45kg when I took over all our cooking, including the dishing up. I felt bad giving Liz less food than me, so I was dishing up similar amounts. Liz has always been very careful with what she ate but was now enjoying more things like ice-cream, chips and chocolate. So, I bought more of these when I did the shopping as I wanted her to be happy. I guess Alzheimer's had removed some of her self-control. Over the next 6 months Liz's weight went up to 54kg. The family thought this was ok as we know people can lose weight when they have dementia. However, it all came to a head one day.

"Stuart, I can't do my bra up" Liz called out. 'What do you mean', I asked. "It doesn't fit, it's too tight" Liz explained. "Oh, (I secretly thought this was a good thing) do you need to get some bigger ones?" "Yes, we need to go to Target" Liz replied. So off we went. I am now standing in the Bra section of Target feeling a bit creepy. "What do you need" I ask. "I'm not sure" Liz replies. I grab one off the rack that looks bigger. "What about this" I ask. That's an underwire bra and I find them uncomfortable. "Oh, what about this", "That's a sports bra, I don't want a sports bra". I then started reading labels. Push-up bra, T-shirt bra, Maternity bra, Strapless bra, Full coverage bra, Demi bra etc. etc. and all different cup sizes. It was at this point that I realised, the only thing I had bothered to learn about bras was how to take them off. We went home empty handed.

I asked my daughter for help. Stef took Liz to a specialist bra fitting shop and they sorted it. I should have done that. I later found out that you can just buy bra extenders from Target which stop the bras you already have being so tight. It doesn't fix the cup size issue though.

Hug Barometer

I said how Liz felt about me directly impacted her willingness to let me care for her with intimate things like getting changed and showering. However, I couldn't always read Liz's mood correctly, so things like helping Liz get changed would sometimes be a disaster for both of us. Liz would get partly undressed and then refuse to take the rest of her clothes off, so I could help put her PJ's on for bed.

I figured out how to use a hug barometer to check Liz's mood in the following way:

I walk towards her with my arms open and say I need a hug.

1. Liz hugs me and doesn't let go, I say I love you and Liz says I love you too. This is a good sign unless she is hugging me because she has been crying. This means I can help her get changed or even to have a shower.

2. Liz just gives a quick hug back -- I say I love you and Liz says you are nice. Still good for getting changed but a shower may not work.

3. Liz doesn't hug back or respond to my 'I love you statement' -- not good, give the shower and getting changed a miss until things improve.

4. Liz says don't touch me and steps back -- things are going to be bad.

What clues do you use to identify your partners mood before trying to help them with something that has not gone well in the past?

Who Knows

Other people don't understand what is going on as Liz is on her best behaviour when others are around. I think she feels safe at home with just me so lets her mask drop and plays up. Only our daughter Bec who stayed with us for months has a full understanding of what life is like for Liz and me as her partner/carer.

Heart nearly always beats head

Emotions affect your behaviour more powerfully than logic. I found Alzheimer's made this very difficult for me to manage. Liz would remember how she felt about me even though she didn't remember what I had done to make her she feel that way. Sometimes she would imagine I had done things to justify her feelings. As I couldn't work out why she was upset, I didn't know what to do to help. I found it best sometimes to go outside for a while and hope things would reset by the time I came back. That didn't always work. I remember reading somewhere that people find mistakes of the heart harder to forgive than mistakes of the head. So, I imagine if she was upset with me for a long time, she thought I had done something mean to her.

My emotions took control of my behaviour at times too. Being tired and exhausted caring for Liz weakened my emotional control. I could hear myself stuffing up and I couldn't stop. Like most people, I have a few hot buttons and Liz would push one every so often. The one that comes to mind is when Liz would say "You don't do anything for me!" It was lunch time and I remember listing everything I had done for her that day. "I found your clothes, helped you get dressed, made your breakfast, took you out for a hot chocolate and now I have made your lunch". That day things were really getting to me and I finished off by asking "What have you done for me today" Liz responded with "A lot". "What"? I asked. This was followed by a lengthy silence during which I realised I was just making things worse for both of us. I went outside to calm down.

Hot Button Management. It helps to identify your hot buttons so when your partner pushes one you are better able to maintain control. I realised another one of mine is when I agree to a trip with Liz, get us organised to go somewhere nice and the whole thing falls over. I remember one time when I asked Liz if she would like to go to a local café in Berwick and then for a walk through the park. It was a nice sunny day and I thought we would both enjoy it. Liz said, "that would be nice". So, I found her some good clothes to wear and helped her to get dressed. I fed the chooks, sorted out the house before we left and made sure Liz went to the toilet. It's about a 10-minute drive and I parked down the hill so the car would be near us when we finished the walk through the park.

We set off up the hill to the café and finally arrive at the front door. Liz stops and asks, "Where is everyone else"? "There isn't anyone else" I say "just us". "Well, that's not right", Liz says and refuses to go in. I could smell the coffee. I really wanted coffee. "Come on its fine, I'll get you a hot chocolate", I say encouragingly. "I'm not going in, it's not right" Liz replies. I persisted for a bit longer but Liz was adamant. I finally gave up and we went back to the car. Liz tried to talk to me on the way home but I wouldn't speak to her. She then asked "what's wrong?" "You stuffed up the morning" I finally say. "You wanted to go for a hot chocolate and a walk and then you wouldn't go into the café". Liz says, "that's not right, I never said I wanted to go". When we arrived home, I let Liz into the house but I stayed in the garden until I calmed down.

This sort of thing happened a few more times but I handled it better, as it wasn't unexpected and I was more prepared to manage my emotional response.

Entertainment

Liz was always a very active person, however, as her Alzheimer's progressed the range of things Liz was able to enjoy decreased. She could no longer do embroidery, quilting, knitting or any of her craft activities. These had always given her so much pleasure. She could not read books or follow TV programs and movies. Seeing the news on TV made her anxious as it was nearly all bad news. Liz couldn't use her Facebook account, send emails and lacked the confidence to call and chat to people on the phone. She couldn't cook her favourite recipes, wash clothes or clean the house and she did not like to travel far from home. She enjoyed seeing the grandchildren but could only cope with them for a short period of time.

I wanted Liz to enjoy the time she had left as much as possible. Here are some of the things we did:

• I prioritised Liz's happiness and stopped doing some of the things I enjoyed doing, so I could spend more time with her. This wasn't hard to do, as I quickly realised that seeing her happy gave me more enjoyment than anything else I would have done.

• As I said earlier, simplified things so I could spend more time with Liz.

• Walked with Liz around local parks, lakes and gardens. When we walked, we usually held hands for a lot of the time which felt nice.

• Took Liz out for a hot chocolate most days.

• Liz couldn't follow a movie but enjoyed watching nature documentaries by David Attenborough etc. I avoided the ones where animals get killed and eaten as she didn't like to see that.

• Liz went out to various places with her NDIS carer.

• We tried adult colouring books but Liz would only colour them if someone was colouring with her. I think Liz's Alzheimer's had progressed too far when we tried this. The books have a range of difficulty so you can choose easier ones as their dementia progresses.

• We tried puzzles for a short time, but it quickly became too difficult for Liz. Similar to the colouring books, Liz needed someone to do the puzzle with her and we probably started this when her Alzheimer's was too progressed for her to really enjoy it.

• Early on Liz liked doing word searches but they eventually became too hard and she stopped enjoying them.

• We have 3 big oak trees and Liz liked raking up the leaves in Autumn.

• Liz amused herself for hours each day by packing and unpacking things. She liked discovering things she had packed on a previous day. It didn't matter that this was a meaningless activity, it kept her entertained, gave her some joy and helped fill in the day for her. It was also something Liz could do independently which gave me a chance to do other things.

• Every Friday my sister Lyn, Liz and I would visit my mum to care for her, bring lunch and go out for a coffee. Liz felt very secure in our company and we all really enjoyed the family time.

• I saved some nice Instagram posts with dogs cuddling up to their owners etc. If Liz was feeling a bit down, I would watch a few of these with her. As they were on my phone, I always had them with me no matter where we were.

• I made music playlists with Liz's favourite songs and put on old home videos of us with the kids.

Pancakes

It was Sunday morning so I asked Liz if she would like to have a pancake with fruit and coconut yogurt for breakfast. We used to have them for breakfast on Sundays sometimes, when we were working. I thought it might be nice. Liz thought for a moment and said, "OK, but not a big one, as I'm not that hungry". This works well as we have a large frying pan and a smaller one. So, I can cook them at the same time and we can sit down for breakfast together. I mix up the batter and call Liz over to tell me when to stop as I pour her batter into the smaller frying pan. She says, "That's enough". I then pour mine into the other frying pan. Liz leaves the kitchen and then comes back as I turn them over. She looks at them for a few seconds and asks "Which one is mine". I say "that one" and point to the smaller frying pan. "How come mine is smaller" she enquires. "You said you weren't that hungry" I respond. "Oh" she says and walks away. As they finish cooking, I call Liz back into the kitchen to dish them up. Liz looks at her plate and asks, "How come I get the smaller one"? "That's what you wanted" I reply. "Oh" Liz responds. We put the plates down on the cutting board next to each other so we can put the fruit and yogurt on them. I have put the fruit in 2 separate bowls as I have learnt from experience that Liz can't judge equal amounts when sharing things out. I hand Liz her bowl of fruit. "Which one is mine" she asks again. I point to the smaller one. "Oh, how come mine is smaller" she asks again. My voice is starting to reflect my frustration. "That's what you asked for. You told me when to stop pouring the batter into the frying pan". We put the fruit and yogurt on to our pancakes and I carry them over to the table, so Liz won't spill anything. She sits down next to me, looks at my plate, then hers and asks "How come mine ....." That's all she got out before I cut her off with "THAT'S WHAT YOU ASKED....." That's all I got out before I realised Liz was pissing herself laughing. "Ha, Ha, Ha, just kidding, you are so easy to stir up" she says. Great, Liz has now weaponised Alzheimer's lol. It was wonderful to have the old Liz back, if only for a moment.

It's not my fault

I just ate a whole big bag of cheese corn chips and now I feel sick. I remember sitting on the couch for a few minutes and wondering how that happened. I usually stopped halfway through the bag and ate the rest another night. Then it dawned on me, it was not my fault, I was left unsupervised. Liz was sitting right next to me and she just let it happen. Liz would usually keep an eye on me and say something like "you're going to feel sick if you eat all of those".

Yeah, it's a thing with Alzheimer's. Liz's awareness of me and my needs had now changed. Liz never nagged me; she didn't need to; she was clearly in charge when it came to managing my health and making sensible decisions about it. She looked after me really well. As I sat there feeling a bit crook, it dawned on me that we had reached a point where Liz would no longer be able to care for me, like she had in the past. I don't just mean telling me not to eat too many chips. I mean all those things that you do to care for each other in your relationship. This would go on to impact me in two ways. One I could do something about, the other one I couldn't.

The one I could fix simply meant that I needed to step up and take more responsibility for those things. To do this I needed some strategies to help. For example, if there was junk food in the cupboard I would eat it. As I did all the shopping, I stopped buying junk food as soon as Liz went into care. I put all the medical checkups in my diary so they would repeat every 12 months. Things like blood tests, skin checks, dentist, optometrist etc. I won't go on; you get the idea.

The second way it impacted me was invisible, like so many of the really important things in life. I could replace some of the things Liz did to care for me by doing them myself. What I couldn't replace was the intimacy Liz's care brought to our relationship. It was an outward expression of her love and care for me. It made me aware of the transition that was taking place, as I gradually moved from partner to carer. It was just another thing Alzheimer's took away and it contributed to my ongoing sense of loss. It reminded me that Alzheimer's would gradually take everything away and give nothing back.

Misery Loves Company

Once a week I would go for a walk with a good mate around Lysterfield Lake while Liz was being looked after by the NDIS carer. It was about a 5k walk and took around 1 hour. This gave me a chance for some stimulating conversations that I was no longer able to have with Liz. It also gave me an opportunity to share some of the challenges I was experiencing in caring for Liz. I was aware of the saying "Misery loves company" and I think there is some truth to it. However, I was also aware that "company may not love misery". My point is that everyone has issues to deal with and you need to be there for your friends as well. Be careful about dominating the conversation with your needs. Dementia goes on for years and your friends may eventually drift away if spending time with you is all about you and a bit depressing. One day during the Covid lockdown, my mate and I had a whinge the whole way around the lake. By the end we both felt a bit depressed, which sort of defeated one of the main purposes of going for the walk. We had a chat about it and agreed to set a 'whinge' time limit for the first 15 minutes of our walk. After that time the topics had to be something else and generally more positive.

Thanks for that

Liz doesn't always show gratitude for the things I do to support her and manage our home. Not because she is ungrateful but because she doesn't remember what I have done. Sometimes she thinks that she did it herself, so I end up thanking her for what I have done lol.

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