Final Year at Home

📖 Table of Contents | ← Part 3 – Middle Years | Part 5 – Moving into Aged Care →

We started to see a Geriatrician and she put Liz on a new medication called Mirtazapine. Two weeks after Liz started this medication she got strong stomach pains after dinner one night. It was difficult to determine what was happening. When I asked Liz where the pain was, she pointed to the curtains. The pain subsided after an hour or so but came back a couple of days later. I spoke to the Geriatrician about it and she was concerned that it was related to the medication change and decided Liz should transition to Venlafaxine. The transition process involved stopping all medication for 2 weeks and then gradually introducing Venlafaxine. It was a disaster.

Within a week Liz became anxious, irrational, aggressive at times and almost impossible to manage. Kicked me out of the house, kicked the NDIS support worker out too and started having panic attacks that lasted for more than an hour. Liz was also still in pain. I took her to the hospital a number of times and they concluded she had a lesion (growth) in her stomach and swollen ovaries. Liz was not in a state to cope with exploratory surgery so we were not sure what to do. A few days later Liz had another panic attack and became aggressive. I called an ambulance but the police turned up first. Liz was storming around outside waving sticks around and the neighbours were trying to calm her down. The police were not needed but I understand why they had to be called. The paramedics contacted a medical person who explained to me that the transition process to Venlafaxine can take 6-8 weeks to work. We still had a number of weeks to go but I was reassured that Venlafaxine was an appropriate medication for Liz and to just hang in there until it worked.

It was at this point that I realised I was approaching a stage where I would no longer be able to look after Liz. My goal was always to do what was best for Liz, so if I thought an aged care facility could do a better job, I would move her into one. I started to think about having to make this transition. Things settled down after 2 months as the medication finally kicked in. However, they were the longest 2 months of my life.

No One Wants My $500K

I started to look at residential aged care options for Liz. I contacted a couple of local places but they advised me that Liz would need to go to a Memory Support Unit and they did not have one. I then found what looked like a very good provider who had a memory support unit only 8 minutes' drive away. I arranged a visit and while sitting with a small group of people doing the Covid test before we could enter the building, I asked them a few questions. They were all very positive about the facility so I thought my search might be over.

The customer service manager called me over to her office and I sat down with her and explained my situation and Liz's needs. She asked, "Have you looked at any other facilities?" I said, "No, this is the first place with a Memory Support Unit I have visited" She said, "Oh, OK, I will take you for a tour so you can see how a Memory Support Unit operates, but unfortunately, there will not be a bed for Liz. I said, "What, just now or never". "Never" was the reply. She then explained why. They have 160 beds on site for the general resident population and 15 beds in their Memory Support Unit. Current residents who have developed dementia are their priority and there are 6 of these people on their wait list. She said most facilities are like this and I will have difficulty getting Liz into a Memory Support Unit from the outside. The tour was valuable as it showed me what a well-equipped Unit should be like.

I visited about 15 different providers over the next 2 months. Some did have vacancies but they were old and awful. They had shared rooms and shared showers in hallways, no access to the outside, very small windows and the residents looked bored. There is information online about what to look for in an aged care facility to help you make a decision. I found 3 that I liked but none of them had vacancies. After 8 weeks on the new medication, Liz stabilised and her extreme behaviours stopped. That was when one of the facilities I liked called me and offered me a position. I couldn't do it as Liz was more manageable. The lady at the facility said that moving into aged care when Liz is stable is the best time to do it. Liz will cope with the transition better. I still couldn't do it. She said that is understandable, it happens a lot as it is very difficult to let go. Some people start by taking their family member home every morning and bring them back at dinner time. I asked her to keep my name on the books for the next vacancy. 8 months later she called back to see if I wanted to remain on her wait list as there were still no vacancies. I said no, as I have been able to move Liz into another good facility.

It is important to determine how difficult it will be for you to find a vacancy for your loved one in a Memory Support Unit. If it is going to be very difficult, I was advised that one option is to move your partner into the general resident population before they need the Memory Support Unit. At least that way you won't end up with someone at home that you are no longer able to care for. However, this approach may have significant costs involved. Another option if you can't get enough assistance through the government programs, is to pay for additional in-home care while you wait for a vacancy. We didn't need to do this as we had NDIS support but it would have been more cost effective for us to pay for a carer for 9 hours per week and a cleaner than to pay for 24/7 care in an Aged Care facility. So, make sure you understand the costs involved before you take any action.

It is also important to find somewhere close to home. My trip to see Liz when she finally moved into a Memory Support Unit, was only 12km but it took 20 minutes each way because of the traffic. Liz was there for only 6 months but I visited her morning and night for the first 2 months, every day thereafter and morning and night for the final 6 weeks. That is over 250 times and each return trip took 40 minutes in the car. Yeah, it's a lot. I listened to podcasts so at least I was learning something while driving.

Medication

Liz was put on a number of new medications to try to stop the panic attacks, stabilize her mood, reduce the risk of constipation and help her sleep. The additional medication added to the complexity of caring for Liz and I needed to manage this well:

You can get a Webster-pack from the Chemist for this. I didn't, I just had a tablet holder sectioned off into days of the week.

I put all her medication out of the way so she wouldn't fiddle with it or take something herself.

I always watched her take the tablet in case she just pretended to take it.

Liz hated taking tablets so I used liquid alternatives where I could e.g. Replacing Iron Tablets with a liquid. Her calcium tablets were too big to swallow, so I got a powder to put in her orange juice along with a tasteless iron supplement.

She didn't like taking the risperidone tablet so I just told her it was her calcium tablet and she was then happy to take that. If she was going to be reluctant to take tablets, I just gave her the essential ones and skipped the others or tried again a bit later. By essential tablets, I mean the ones that can lead to withdrawal symptoms e.g. Venlafaxine if not taken for 3 days.

If Liz refused to take her medication from me, I would sometimes call my daughter Stef and she would try to convince Liz to take her medication over the phone. A video call worked best.

Liz Hit Me During the Medication Transition

I was sitting on the couch next to Liz and we were arguing. I can't remember what it was about but we rarely ever argued, so something odd was happening. Liz raised her hand and slapped me on the leg really hard, clearly intending to hurt me. I remember thinking, I made your breakfast and lunch, helped you get dressed and cared for you all morning. Stuff it! I slapped her back on her leg just as hard as she had hit me. I thought that might send her a message not to hit me. In the heat of the moment, I forgot how feisty she was. Liz leapt off the couch and stood over me. I thought she was going to hit me again, so I stood up too. Liz pushed me as hard as she could, so I pushed her back on to the couch. She bounced straight back up in my face and screamed "Get Out, Get Out".

OK, at this point I realised my approach had made things worse. "OK, OK, I'm going, I've just got to get my shoes on" I said. "Get Out" she screamed again as I hurriedly found my shoes and put them on. Liz stood over me the whole time and followed me out to the car. I had to open the gate so Liz followed me there and then stayed by the gate. As I started to back out, I realised she had shut the gate. "I can't leave if you don't open the gate" I called out. Liz opened it and then closed it after I was through. She shouted at me not to come back.

I went to the local café and called my sister to help me process what had just happened. I stayed there for about 45 minutes and then came back home. I parked on the other side of the gate just in case I needed to leave again. All my shoes had been thrown out on to the front lawn. I picked them up and brought them inside and then went to find Liz and see what my reception would be. I was quite anxious because I knew if I couldn't manage Liz's behaviour she would need to go into care. I found Liz in the bedroom. She was calm and clearly had no memory of what had happened. She moved on much quicker than me. The remainder of the day was fine.

I got kicked out of the house a few more times until the new medication started to work. I just left straight away, which was the best approach. A couple of times I found Liz wandering around in the neighbours' gardens when I returned, quite disoriented. She was relieved to see me and I was relieved to be welcomed back. The NDIS support worker was kicked out more often than me. I felt sorry for her standing outside in the cold waiting for me to get back.

Who Has the Power in a Relationship?

Years ago, one of my work colleagues was a clinical psychologist. I don't know how the topic came up, but he made the following statement. "Who has the power in a relationship. The one who doesn't care". It was like a light bulb moment for me. I guess it had never occurred to me, as Liz and I both cared so much for each other. However, it helped to explain the behaviours I saw in dysfunctional relationships, particularly where coercive control was involved.

OK, so where's the relevance to Alzheimer's. Firstly, I'm talking about the level of care you both have for each other in your relationship, not about providing care 'for your partner'. As Liz's Alzheimer's progressed, she didn't always know that we were married or even who I was. Her level of care about me and our relationship decreased and as a result, her power in our relationship increased. At times, I found myself apologising for things I hadn't done, keeping quiet while I was being told off, putting her needs ahead of mine and adjusting my life to suit her mood.

I felt a bit like a servant with a difficult master. I knew this was not Liz's fault and there was no other way to make things work. It was all just part of caring for my wife with Alzheimer's. I loved Liz, so I just sucked it up.

Showering Became Very Difficult

When we built our house, we put a double shower in our ensuite. We didn't realise it at the time but it turned out to be a wonderful thing. We always showered together so we had at least 20 minutes every day to talk to each other with no interruptions while we got our clothes, showered and got dry. When the kids were little, we would put them in a baby's bath between us on the floor of the shower. The house is 40 years old so the shower has hot and cold taps which Liz had difficulty adjusting. In the initial stage of Alzheimer's, the double shower was really handy, as I could adjust the temperature of Liz's shower while I was in the shower with her.

As Alzheimer's progressed Liz reached a stage where she didn't want me to see her naked at times. It was hard to know when this would occur, so it was just easier to move to the single shower in the other bathroom. This stage coincided with Liz transitioning to a different medication and things became very challenging for both of us. Liz hated the cold, so I would heat the bathroom for 20 minutes beforehand with an electric blower heater and warm up her towel. If she didn't want me to see her naked it sort of went like this.

We are standing in the bathroom, I have got Liz's PJs on the bench and the room is really warm. "You need to take off your clothes so you can get in the shower", Liz, "why"? "Because you don't shower with your clothes on". "Do you want me to help you" Liz. 'No, I can do it'. Me. "I'll turn on the shower while you get ready". Liz. "OK". I turn on the shower and use the digital meat probe from the kitchen to set the temperature to 39c, as I can never get it right by just using my hand to check. I turn around and see that Liz is still fully dressed. My sister explained this to me by saying Liz just hears a 'word salad'. I say, "you need to take your clothes off to get in the shower" Liz thinks I have said something like "wheat is the grass that mows like a harvest" hence she is still fully dressed. The shower is now running and the bathroom is filling up with steam. It is like a sauna, so I take off my jumper and try to explain what she needs to do. Liz seems to understand me this time and starts taking her clothes off. When she gets down to her underwear she stops and looks at me. "Do you want me to turn around so you can take your underwear off"? "Yes" Liz replies. I keep my back to Liz and go and check the shower again.

Out of the corner of my eye, I see Liz putting her PJs on. I'm annoyed with myself. This has happened before and I should have left her PJs outside the bathroom and then got them when she was in the shower so she couldn't make this mistake. "Don't put your PJs on you need to have a shower" "Well you didn't tell me that", Liz replies in an annoyed voice. I have learnt not to correct her. "Oh, ok sorry, you just need to get undressed to have a shower" "No I don't" says Liz. "You haven't had a shower for a few days, so you do need to have one" I explain. "I've had showers" Liz states emphatically. Experience has taught me to bail at this point. I turn off the shower. "Can I help you with your PJs" I ask. "No go out" Liz snaps. I remind Liz to be careful of the heater and leave to make dinner. Liz is in there for ages. When she eventually comes out, she is dressed in her PJs. I go back into the bathroom to pick up her clothes but can't find her jeans anywhere. I give up looking and go back to finish making dinner. Liz is standing in the kitchen fiddling with her pyjama pants. "What's wrong with your pyjamas I ask". "They're uncomfortable" Liz replies. They look all sort of bulky from a distance, so I come over for a closer look. I then realise Liz has put them on over the top of her jeans. No wonder I couldn't find them. Oh man, how do I fix this when she doesn't want me to see her naked.

OK, I think by now you get the picture, showering became a nightmare. A few things I tried below:

Using the meat thermometer to correctly set the water temperature. I needed to hold it up where the water came out of the shower rose for an accurate reading. This worked.

I tried offering a bath if Liz wouldn't have a shower. This never worked.

Liz was tired and more emotional at night. It was best to try to shower her in the afternoon.

The bathroom exhaust fan made Liz cold but I didn't want to leave the bathroom wet from steam if we didn't use the exhaust fan. I turned it on for 20 minutes when Liz left the bathroom and this helped to dry things out. I set a 20 minute timer on my phone so I wouldn't forget to turn it off. Yeah, I still forgot at times.

Liz's mood determined if a shower was possible. If she was happy and trusted me, I had a better chance of success. I needed to be mentally prepared for it too. Sometimes I just couldn't face it, so I gave it a miss.

If I couldn't get Liz to have a shower and our daughter Bec was with us at the time, she would try. This sometimes worked.

Liz just showered less often, sometimes only once or twice per week. It was winter and she didn't smell.

As Liz was showering less often, I was worried she would get a urinary tract infection (UTI). I was also not sure how I would know as Alzheimer's can exhibit similar symptoms. I got Liz to use wet wipes to reduce the chance of a UTI. You need to make sure they wipe front to back as they can forget this. I also got some UTI test strips from the chemist so I could do our own tests. Liz never got a UTI.

Liz had long hair and this became hard to manage and a bit greasy if it wasn't washed. We found a hairdresser that Liz liked and the NDIS support person or I would take Liz there to get her hair washed.

Bec suggested using an oil cleanser for Liz's face, as she had dry skin. It doesn't require water, just rub it on and then use a warm face washer to wipe it off. To begin with Liz was able to do this herself with clear instructions, however over time it became more difficult and Bec took over doing this. Liz also had dry skin on her legs, so we would use a warm face washer to wipe her legs and feet and then apply moisturiser. Liz usually enjoyed this as she felt she was being pampered. Bec continued this when Liz went into Aged Care as it was something Liz enjoyed and seemed to make her calm and relaxed.

Minimise opportunities for mistakes. I kept Liz's PJ's out of the bathroom until she was in the shower and put her dirty clothes in the washing basket before she got out of the shower. That way she couldn't put the wrong clothes on if I had to look away for privacy.

Know when to give up and it is usually best to give up early or it trashes the rest of the day/night.

The carers that Liz liked at the aged care facility managed to shower Liz every few days. They had more success than me. They even managed to wash her hair.

Pictures and Videos

Pictures and videos of Liz have played a role in our dementia journey, and I have summarised a few thoughts below:

I took videos of Liz having panic attacks after her medication was changed so I could show them to her Doctor and send them to her Geriatrician. I arranged for Liz to be cared for, so I could attend the Doctor without her, review the video on my phone and discuss what we could to do to help her.

When I took a picture or video of Liz having a bad episode, I made sure she didn't know I was doing it. I felt a bit sneaky, but Liz would have been upset or angry if she saw me. I only did this if there was a good reason.

I only sent pictures and videos to people that I thought pre-dementia Liz would accept. When I was unsure for things like this blog, I checked with our children.

When things went off the rails and Liz was having panic attacks, I sent some of these videos to our adult children. I knew it would upset them but I did it anyway. I didn't think it through at the time but I believe there were a few reasons:

Part of it was a call for help as I didn't know what to do.
I wanted them to understand what was happening and how things were progressing, so I could take them with me on the journey in caring for Liz.
Seeing Liz like this and being unable to help her was very difficult to deal with emotionally. I think part of sending the videos to our children, was to help them understand my emotional state. They were upset but sympathetic and helpful when they saw the videos.

95% of the pictures I took of Liz were happy ones. I sent many of these to family and friends. I also showed them to Liz in the afternoon if she had forgotten that we had been out for a hot chocolate in the morning.

Be careful what you take pictures and videos of as they can come back to haunt you after your partner passes away. I know I can delete the ones that upset me but I have found that harder to do now Liz is no longer here. Also, some things catch you out by surprise. I took a picture of Liz asleep in bed holding her teddy bear. Just their faces were poking out from under the blanket and I thought it looked really cute. Now when I look at it, I see Liz frightened, confused and seeking comfort in a world she can no longer understand.

Liz Wants to go Home

Liz at home, waiting for me to take her 'home'.

Liz started saying "I want to go home" in the afternoons. The trouble was we were at home. I tried to explain that to her but it didn't help. I ended up calling Dementia Support Australia for guidance on what to do. They said Liz is seeking the comfort and security of a familiar, safe environment. I guess her memory loss had erased her ability to find that with me, in the home we built together. They suggested I say "OK, I'll take you home". Then go for a short drive with her and come back home. This worked for a bit but only seemed to delay the behaviour for a while. An hour or so after we came home from the short trip Liz would say "I want to go home" again.

My daughter Bec said "Liz needs co-regulating in the afternoons". I said, "What's co-regulation?" Bec said "Mum seems to be tired in the afternoons and have negative thoughts that build up over time. It is then hard to get her out of the negative head space. She can't manage her emotions without your help. That is why she often says "I've got to go home" in the afternoons, even though she is at home. She needs you to manage your own emotions so she can copy you. You need to be calm and positive and happy, to influence her emotional state".

How people's emotions influence you made a lot of sense to me. My sister Lyn is a very positive and energetic person and spending time with her always gives me energy. It made me more aware of how my emotional state was influencing Liz's mood and behaviour in both a positive and negative way. Bec and I then adjusted our days so we could spend more time with Liz in the afternoons.

Sex.......remember that?

I have no idea the role sex plays in sustaining other people's relationships, I can only comment for me and offer my thoughts about it. I have not even read anything on Alzheimer's and the person's capacity to give sexual consent. Different Dementia medications can also impact a person's interest in sex in both a positive and negative way. As Liz's Alzheimer's progressed, she started to forget that I was her husband and didn't even know my name at times. She became anxious, frightened and confused a lot of the time. At some appropriate point our sex life stopped, and I don't even remember when that happened.

You don't need to have sex to have a good relationship. Most of our great relationships have nothing to do with sex. Think about your best mates, family, lifelong friends and work colleagues etc. You can still have a great relationship with your wife after sex is no longer possible.

I Miss the Intimacy -- Not the Sex.

One of my colleagues at work had been caring for her husband with a progressive brain disease for several years. He eventually passed away in his mid-50's. I was having a chat with her about how she was coping without her husband and she thought for a moment and said. "I miss the intimacy" She then realised she was talking to a bloke so clarified the statement by saying "Not the sex". That statement was made many years ago but it stuck in my head for some reason. It made me stop and think about the intimacy Liz and I shared in our relationship and how much I took it for granted. I wasn't consciously aware of it. I don't know about you but I had never really thought about the things in life that sustain me and how important each one was to me. Sex is good and I don't want to downplay its importance in a relationship. However, when I think about all the times I have cried over what was happening to Liz and its impact on our relationship, I never shed one tear because we stopped having sex. As Liz's Alzheimer's progressed the intimacy in our relationship changed and became more one sided and associated with the care I was providing. It reduced but never totally disappeared, until Liz was near death and became unconscious.

Liz's Pain Returned

Liz is sitting on the couch with her jeans undone, holding her stomach, rolling around and crying. She is obviously in a lot of pain. I don't know what to do. She says, "take me to the hospital". I don't, I wait to see if things settle down and after 30 minutes or so they do. Two days later it happens again but this time it is worse and she is screaming and shouting at me to call an ambulance. I call but it will be an hour before they can attend, so I manage to get her into the car and we drive to Emergency at the hospital. They give her painkillers and we sit there for hours. They did some tests and said that she was constipated and also her ovaries were enlarged. The medication Liz was on causes constipation and Alzheimer's also causes constipation because it slows the digestive system down. We were advised to see our Doctor to get medication to address this.

We visited our local Doctor and he read through the hospital report. He then asked Liz if it was OK for him to have a chat to me outside the room. Outside, he explained that constipation was an issue but that Liz also had a lump in her abdomen that might be a sign of cancer. He said that they can't tell if it is malignant unless they do surgery. I said that I don't think Liz will cope with that and he agreed. We decided not to tell Liz as this would only cause her stress. We got a prescription for laxatives that resolved the constipation problem for a few weeks.

The problem then resurfaced. It started with a bloated stomach, loud gurgling sounds and pain. We ended up back in the emergency department of a different hospital and they did some additional tests and concluded that the growth in Liz's stomach might be causing a small bowel obstruction. I was confused by the medical terms. I thought your bowel was your large intestine and a small bowel obstruction was a small blockage of your large intestine. I finally found out your small intestines are also called your small bowel. So, Liz's intestines were being blocked by the lump in her stomach. More laxatives were recommended but no one mentioned putting Liz on a low residue diet.

The problem occurred again a few weeks later and Liz started throwing up. This time I took her to a Private Hospital and they admitted her to see why she was throwing up. She was constipated again and they resolved that with an enema but they wanted to do some tests. Liz stayed in hospital for 5 days and I was with her the whole time. I slept there at night as she was frightened and confused being in a strange location. It was exhausting. The additional tests confirmed what was found in the previous tests and after 5 days Liz was discharged.

10 days later we were back in the hospital as Liz was still throwing up at night. Liz was there for 10 days this time and we finally got some answers. My daughter Bec and I took turns staying with her. The Oncologist said he has seen this many times before. While he can't confirm the diagnosis without surgery, he believes that Liz has ovarian cancer and it has spread. She has a large lump that has attached to her intestines and causes a blockage. Surgery to determine exactly what was going on was offered. It would involve removing the tumour and probably a section of her bowel. Liz would then most likely need radiation, chemo and possibly a stoma (bag) and it would take a long time to heal. Did I want him to do this? I asked him if it was malignant cancer, how long would Liz have to live? He said 6 to 12 months and the pain could be managed well with medication. I discussed this with my family and they all agreed it would cause Liz too much distress. The feeling was that Liz's quality of life was more important than her length of life. She would not understand what was going on or be able to manage the long recovery process. I advised the Oncologist of the family's decision and he agreed with it. He asked if I saw the dietitian before I was discharged last time and I said no. He wasn't impressed with that, as he said that Liz needed to be on a low residue diet. I met the dietician the next day to plan what Liz could eat.

The Oncologist and resident Doctor advised me that Liz needed to go into permanent care in a Memory Support Unit. They felt it would be too difficult for me to manage her pain medication requirements for the cancer and her advanced Alzheimer's needs, 24 hours a day. The hospital then spent 3 days trying to put pressure on a number of Memory Support Units to accept Liz. They had no vacancies, so would not take her. The day before Liz was due to be discharged one of the top 3 Memory Support Units I had short listed contacted me with a vacancy. I was so relieved but then we ran into an unexpected obstacle. Liz could not move permanently into Aged Care as she was still on the NDIS. I needed to cancel her NDIS, so I called them. They advised that they could not stop her NDIS unless she moved into aged care. It took a few calls but I got around this by NDIS sending a letter to the aged care provider stating their intent to cancel Liz's NDIS plan. Yeah, I was lucky I was dealing with reasonable people who had Liz's best interests at heart.

← Part 3 – Middle Years ↩ Table of Contents Part 5 – Moving into Aged Care →