Moving into Aged Care

📖 Table of Contents | ← Part 4 – Final Year at Home | Part 6 – Liz Passing Away →

Moving Into a Residential Aged Care Memory Support Unit

When I left Liz behind at the Aged Care Facility for the first time, it made me think about a quote I had heard on The Rings of Power. "Strange how that which is left behind can be the heaviest burden to carry". Leaving Liz there generated a whole range of emotions and I felt so guilty on the way home. Like I had given up and let her down. I knew it was the right decision but it still wasn't easy.

Onboarding Process

After 10 days in hospital Bec, Liz and I arrived at the Memory Support Unit. We were all exhausted. I found the process of taking Liz into the facility confusing and not very well done. It was a stand-up discussion about Liz and her needs in her room in front of Liz. I suggested we go somewhere more appropriate for this, away from Liz, but the nurse said, "Here is OK". I was given an induction booklet that explained an induction process that didn't match what we had just experienced. They did organise a meeting with the manager of the kitchen so we could explain Liz's gluten free and low residual dietary requirements, which was reassuring. However, Bec and I left that night lacking confidence that they knew enough about Liz to effectively care for her.

Over the next couple of weeks I spent time trying to find out how the place worked. Who's in charge, how do I contact the Doctor, will they call me if there is an issue at night, who does what -- Personal Care Assistant, Nurse, Registered Nurse, Catering Staff, Activities Co-ordinator, Maintenance, how do I book Liz into the hairdresser? Etc, etc. There was a lot to learn, but I needed to learn it because I was now Liz's advocate. Liz was no longer able to manage all this for herself.

As I began to understand how they operated and saw how good they were with Liz, my level of anxiety decreased and I became confident that I had made the right decision. I drafted an email for the Care Manager outlining what I liked about the facility and the care they provided but also my initial concerns with their onboarding process. The Care Manager contacted me to arrange a meeting. One of the senior nurses also attended. I have worked in a number of large organisations and I was interested to see how they would respond. I wondered if it would be one of those .....'yes but' responses. To my surprise they took it very seriously and we spent 45 minutes discussing my experience. They agreed there were issues as the head office sends out a generic Welcome Pack to all its Aged Care Facilities that does not reflect local approaches. Also, the Welcome Pack doesn't differentiate between the general aged care population and the needs of new people in the Memory Support Unit. They asked if they could send my feed-back to the head office team and my positive comments to the local staff caring for Liz. I obviously agreed as my intent had always been to be helpful. The manager of the overall facility also caught up with me a few days later to check how things were going. OK, I'm telling you this because I learned a few things from that meeting and over the next few weeks:

Your partner should have a Care Plan in place that is updated as required. A lot of different people were caring for Liz over a 24/7 timeframe. The Care Plan guides the care they provide. Ask for a copy if you haven't seen it and get them to add any important information you think they have missed.

They need to know how involved you want to be in the care of your loved one. I wanted to work collaboratively with them in caring for Liz. They were very happy to do this, so I could continue my caring role. I didn't realise our situation was different to nearly everyone else in the memory support unit. As Liz had Younger Onset Alzheimer's, we were much younger than the general population there. A lot of the other residents were single or had partners who were too old to drive. Their adult children booked them in and did not have the time or possibly the interest in visiting them frequently. I was told some people drop their parent off and don't bother coming back to see them until Christmas.

If you are helping to care for your partner you need to understand what information you need to pass on, so it can be recorded. For example, constipation is a common issue for Dementia suffers and may require them to have an enema. This can be very stressful for them. As a result, you may need to report when they have opened their bowels, which is medical jargon for 'done a poo'. Your partner may also have specific medical requirements you need to monitor when caring for them.

If you are now living by yourself with your partner in care, it can get lonely. Get to know the staff at the facility, learn their names and interact with them. I also got to know some of Liz's fellow residents. Every time I visited, they would give me a wave and say hi. One of the residents always knew where Liz was and would tell me where to find her. I always felt welcome.

Leaving Liz was difficult at times. The lady who managed the daily activities helped me with this. Around 10am when I was about to leave, I would take Liz into the area where they were about to start the activities and she would look after Liz while I left. This only happened because I got to know the lady doing the activities and as a result, she became aware of my difficulty leaving.

I needed to be an advocate for Liz as she was no longer able to advocate for herself. I have never done this before on an ongoing basis. I sort of just stumbled into it. When I think of advocacy, I think of speaking up for someone who can't speak for themselves. It has just dawned on me that it was so much more than that. I didn't just need to speak for Liz, I needed to build relationships with the staff for my advocacy to be effective. This wasn't planned, it just happened because I liked the staff. However, these positive relationships contributed to a sense of teamwork as I collaborated with staff in the provision of care for Liz.

What we put in the room

• Clothes obviously so I won't go into detail. I relied on Bec to help with this. Winter/Summer track-suit pants worked well. Zip up tops or cardigans became essential as Liz couldn't cope with jumpers being pulled on and taken off over her head. As the Alzheimer's progressed, we eventually gave the bra a miss.

We had a lockable draw but no key. So, I put the things that might be dangerous or that I didn't want Liz to access at the top of her wardrobe where she could not reach.

Liz went into Aged Care in November and received a lot of Christmas cards that year. She read them over and over. I brought in old birthday cards she had kept from family and friends for her to read. They are all very positive and make her feel special. She carries them around with her and reads them every day.

The photo book of all her family and friends I talked about earlier.

Nail clippers and nail files for when she broke a nail. She let me cut her toenails and staff cut her fingernails.

Scissors for loose threads on clothes and gifts friends brought covered in hard plastic we couldn't open with our hands. I trimmed the split ends on Liz's long hair a few times as well.

A teddy bear she likes.

Interactive Companion pup that we were given by Dementia Support Australia after the Care Facility requested a review to see what could be done to better manage Liz's emotional state. It definitely helped.

One of the residents in the corridor was very noisy and sometimes would shout out UUUP! UUUP! UUUP! over and over. It was quite annoying but not his fault. Being younger than the general population there, Liz has excellent hearing. So, it was a bit of an issue. I was there with Bec listening to him from inside Liz's room one day and in a moment of black humour, I suggested to her that we get him a bark collar. Bec pointed out that it wouldn't work as he wouldn't remember why he was getting the electric shocks. We tried using noise cancelling headphones. The aim was to use the headphones so Liz could listen to her favourite play-lists and block out any noise. This required access to Bluetooth from her phone which had a password and needed to be charged. It was too complex to explain to all the staff and Liz couldn't manage the controls on the headphones. So, it didn't really work as I had hoped. We played Spotify via the TV in the room. We found some relaxation and sleep YouTube videos that showed tropical fish with quiet music and played for 8 hours. Towards the end I put these on at night to help settle Liz and kept them on after I left to go home.

Bathroom scales so I could monitor her weight.

Permanent marker for gifts friends gave her that I needed to label

A sealed plastic container at the top of her cupboard for treats that I didn't want her to eat all in one sitting. It also stopped other residents from helping themselves. I would put a few wrapped treats like Lindt Balls in her top draw before I left and she would find them later in the day as a nice surprise, when I wasn't there.

Blu-Tack for pictures the grandkids brought in. We put some pictures on her wall from home and I stuck some plastic butterflies to the top corners of her bathroom mirror to make things look nice.

Some spare pull up pants. I used these when Liz went to the toilet and there were none left in the bathroom. Otherwise, I had go to the office to get more and leave Liz sitting on the toilet for 5 minutes. Trust me, anything can happen in 5 minutes.

Moisturiser, Lip Balm, hair ties oil cleanser and shower hat.

Liz did not recognise the soap dispenser on the wall in the bathroom. So, I brought in a soft soap container she was familiar with from home. If the sliding door to the ensuite was closed, Liz couldn't find the toilet. I printed a sign for her door that said TOILET and put one behind the toilet that said TOILET with an arrow pointing to it. This was to help Liz distinguish the toilet from the shower chair. This worked as Liz could still read, even though she was confused by a shower chair.

Liz gets cold easily and we wanted to make sure all the staff were aware of this. We printed instructions on how to dress Liz for the day and how to dress her at night and stuck it on the wardrobe so it couldn't be missed. Staff didn't want to put socks on her at night because in Aged Care, socks are a slip hazard. Given Liz was still young, physically capable and usually put her slippers on as soon as she got out of bed, they made an exception.

A warm blanket she can carry around as she feels the cold.

A quilt she made.

I often brought her favourite fragrant roses in from home and they gave me a plastic vase to keep in her room for this.

Liz feels the cold badly so I bought a digital thermometer from Amazon that also shows minimum and maximum temperatures so I could monitor the warmth of her room and adjust the heater. It worked well until it disappeared a couple of months later. Yeah, I forgot to put her name on it. See below lol.

Please remember to put anything dangerous like scissors or that could damage things like marker pens, in a safe place they cannot access. Also, remember to put their name and room number on EVERYTHING! The facility will usually put iron on name tags on their clothes for you for a fee.

Helping Liz

What I do to help in the mornings/evenings when Liz refuses to let the staff help her. This happens a lot. Cleaning her up and changing her, advising the staff if she has opened her bowels, helping her eat breakfast/dinner, helping her take her medication when she refuses to take it from the nurse, tidying her room, finding things that she has lost walking around the facility, handing back things she has taken from other residents the day before and asking the staff to find things that other residents have taken from her. We go for a walk if she is interested, or I just spend some quiet time with her keeping her company. This takes around 1.5 to 2 hours to do and on a bad day, when she refuses my help, some of it doesn't get done. Sometimes she turns on me and threatens to kick me in the balls if I don't get out of her room and leave her alone. I use this as an opportunity to get her to take her most important morning medication by saying. "OK, if you take this tablet I will leave". Liz begrudgingly does this just to get me away from her. Although the whole process can be frustrating and emotionally draining, I usually leave feeling ok as I have helped improve the day for Liz.

I was able to take Liz out to the local Café a few times per week for the first couple of months. After that it became to risky and stressful for Liz. I made sure I let them know I was taking her offsite and filled out the visitors book. I kept some incontinence pads, wet wipes and a complete change of clothes in the car, just in case.

What's So Funny?

The nurse who manages the medication brings her border collie in with her most days. It goes on the rounds with her carrying a tennis ball that the residents roll for it. Liz loves seeing the dog and it actually makes it easier to get Liz to take her medication. One morning Liz and I were walking near the door to the outside garden. The border collie was standing there looking really miserable. A couple of staff were nearby having a chuckle and the owner was squatting down by the dog. I looked more closely and saw it was soaking wet and the owner was wiping it with paper towel. "What happened"? I asked the staff having a laugh. There was a bit of a pause while they worked out who was going to answer. Then one said, "Oh, um.... One of the residents did a poo in the garden and the dog rolled in it".

It was great to hear Liz laugh and it set us up for a good morning together.

Adrian flew down to see Liz.

A Moment of Clarity

I am sitting with Liz at the back of the communal area watching a repeat of a Mr Bean movie. All the residents have dementia and none of them realise it is the same movie that has been on all day. I wonder if the staff don't realise it has been on all day or if they only change the movie when they are sick of hearing it. Liz turns to me and in a rare moment of clarity says, "I don't have much of a life, do I?" I have no idea what to say, so I am just honest, "No, not really" I reply. "I just want to go" she says. It breaks my heart. I tear up in the car on the way home.

Leaving

If I can get Liz to sleep at night before I leave the Age Care Facility, it is easy to go. If Liz is angry with me and I am not helping by being there then it is reasonably easy to leave. If Liz is frightened or in pain it is hard to leave her there. If Liz is crying and follows me to the exit door, then taps on the window as I walk past, it is really hard to leave. The worst-case scenario is when I have difficulty leaving, get out to the car and realise I have to go back to get my glasses and do it all again.

Managing My Emotions Over the Years

Loss and its associated grief happen slowly with Alzheimer's. I experienced these feelings even though we were still married and loved each other. Liz was pretty much the same from one month to the next but over the years many of the things I loved about Liz began to fade. Her independence, intellect, sense of humour, knowledge and skills all diminished over time. They were replaced by confusion, pain and anxiety. I initially thought the intensity of my grief would be stable or even reduce if I could learn to manage it. However, the opposite happened. My feelings of loss and grief increased over time as Liz's illness progressed and she began to fade away. It was also magnified by the pain and suffering she was enduring from her cancer. I've never been much of a crier. My daughter Bec said the first time she saw me cry was when she was 18 and I was crying with laughter at a joke on TV. I cried with Liz quite a few times after the diagnosis. This settled down for a while and was replaced with an underlying sadness and apprehension about what was to come. As the dementia progressed my sadness increased, and the tears were just below the surface. I didn't cry out loud but my eyes would fill with tears and if I didn't get a grip on my thoughts, they would run down my face. This mainly happened when I was by myself, and I would sometimes swear out loud and tell myself to "stop it".

Most emotions like happiness, excitement, anger, frustration etc don't last very long. Some only last a few minutes. I found grief to be quite different. I have never been depressed but I guess, like depression, grief just hangs around. It's with you when you go to bed and it's there when you wake up. The intensity varies and I found I did have some control over it. I could increase and decrease the intensity of my grief by managing my thoughts and actions but I couldn't make it completely go away. Yes, sometimes I deliberately increased the intensity of my feelings of grief because I wanted to feel sad. I don't know why.

In the early stages of Alzheimer's, Liz would see when I was upset and put her arms around me to console me. As I would do for her. As the Dementia progressed, this occurred less frequently as Liz was not always aware of what was happening. However, in the final few days before Liz died, she reached out and stroked my face when I was kneeling down and crying next to the bed. It just made me cry more to know she still cared about me when she was so close to death. I did think about why I would cry at times. I don't think my emotions were selfish. By that I mean, I don't think I was upset by what Liz's Alzheimer's had done to my life. It was about her loss and pain and for our future together that will no longer be what we had hoped.

I have grief because I am losing Liz but Liz has grief because she is losing 'everything'. I feel totally inadequate to talk about Liz's grief, so I won't. I have good analytical skills but not much insight into others' feelings and motives. Liz was very stoic. She just got on with life as best she could with very few complaints. She did a lot of crying in the last couple of years but that appeared to be mainly due to medication changes, pain from the cancer, anxiety, confusion and delusions associated with dementia. I'm not sure if people experience grief in the final stages of Alzheimer's as they probably don't remember what they have lost.

Yeah OK, a pretty depressing read, and I didn't enjoy writing it. However, it made me realise that the hardest thing for me as Liz's partner and carer through the whole journey, has been coping with and managing my emotional state. It is with me 24/7, it is complex and I have never been taught how to deal with it. I have accessed online resources for carers, attended an online support group and completed a course explaining dementia from one of the universities. They all focussed on explaining the stages of dementia and the challenges of being a carer. They emphasised looking after yourself as a carer but didn't really touch on how to manage your emotional state. Well, maybe I missed it, but it would have been helpful. So what helped me?

As I said earlier, I don't have a lot of insight, well, I guess I have enough to know I don't have much. I think insight is one of the things you have to have to realise you don't have it. Anyway, I can't separate my grief from all of the other negative emotions I am feeling. It just blurs in with sadness, anxiety, frustration, guilt, loneliness etc. So, I will bundle all of those in together and talk about what helped me cope.

Driving to and from the Aged Care Facility has meant that I spend hours in the car. I am finding the news depressing, so I decided to listen to podcasts. I heard this on a Mel Robbins podcast and it was a perspective I hadn't considered. She said that feeling grief, sadness, anxiety, frustration etc in this situation is good. We are meant to feel this way when things are bad and it is healthy to do so. If we didn't have these feelings in a bad situation there would be something wrong with us. That doesn't mean we should be wallowing around in grief. It means that, if your emotional response is in proportion to the events, you are having a healthy response. So, it's strange to say, but I feel a bit better about feeling miserable now.

In the early stages it was acceptance that helped me cope. I changed my expectations of our retirement, our relationship and of Liz as my wife. I didn't fight against the adjustments we had to make. I eventually realised I wasn't in control of everything and just went with the flow as best I could. I also accepted that the world is not a fair place.

Years ago, I remember going to a program called 'New Aged Thinking'. The presenter said "The only thing you 'have' to do in life is die. Everything else is a matter of choice." When I thought about it, I realised it was true. So, I see my transition from partner to carer for Liz as something I have 'chosen' to do, not something I 'have' to do. This just feels like a more positive way to look at our situation and stops me feeling like a victim. So, listen to your words and self-talk and replace 'have to' with 'going to' or some other positive words.

When Liz went into Aged Care the day-to-day stress of trying to support her was reduced. To some extent, it was replaced by anxiety as I worried about how she was coping in a strange new environment. Also, if you are like me, you are now alone in your home. I am 67 and I have never lived by myself. It has been a few months now and I don't feel lonely yet. I think this is partly because I see Liz each day and talk to the staff at the Aged Care Facility. Also, my daughter Bec comes and stays with me for a few weeks at a time and I visit my sister and mum each week as we care for her. I have told my family and friends that I need to live vicariously through their adventures and holidays as I am focussed on supporting Liz. So, they send me texts, pictures and WhatsApp videos of what they are up to. It helps me stay connected, gives me pictures to share with Liz on my visits and I get some joy from them having a good time on holidays. When the daily visits to Liz finally stop, I am sure loneliness is something I will need to manage. I do think about it but it is not an issue now, so I don't worry about it. I will sort it out later if I need to.

I made a playlist of songs on Spotify that Liz and I liked. I called it the Quiet playlist as they are all gentle songs with beautiful voices e.g. Adele, Calum Scott, Sam Smith, Eagles, Eva Cassidy, Sarah McLachlan etc. If you listen to the words they are all sad songs but they didn't make us feel sad. I'm not sure we even listened to the words, just the voices and the melody. The music helped us feel calm and relaxed and matched our mood. We played this hundreds of times over the years.

I said earlier on that sometimes I just wanted to feel sad. This occurred more in the first few years after Liz's diagnosis. It usually occurred when Liz had gone to bed and I was sitting in the family room by myself. I would put my headphones on and listen to a cover of a Bill Withers song: Ain't No Sunshine, by Shawn James on Spotify. I would only listen to it once or twice at a time. I didn't want to wallow around in grief. I think I just wanted to bring out some of the emotions I had been holding back all day.

Managing my thoughts and self-talk. It's a bit like living in a minefield with roped off areas that you don't go into. After a while you realise what upsets you and you can stop your thoughts from straying into those areas.

Bec staying with me -- she understood what was going on, helped carry the caring load and knew how to support me.

Calling family and friends when I was starting to feel down or if my visit to Liz was a bad one.

Keeping busy which distracted me from thinking about Liz all the time. (being busy can also be avoidance of having to deal with your emotions). This wasn't planned, it just happened as I picked up all the jobs Liz used to do and we have over an acre of land to maintain. My sister Lyn and I also care for our 96-year-old mum who still lives at home. Life was busy and I had little down time.

Knowing I was doing the best I could to look after Liz while still taking care of myself so I could be there for the long haul.

Helping Liz makes me feel better.

Confidence that the aged care facility was doing the best they could to care for Liz. I developed this confidence by spending a lot of time there. Morning and night visits for the first 2 months, then daily visits and then morning and night visits again in the last 6 weeks Liz was there.

Sleep -- At home, Liz was waking up multiple times during the night and turning the light on. I ended up sleeping on the floor in the family room, which was close to the bedroom so I would know when Liz got up in the morning. I was stressed out and still didn't sleep well. I started taking melatonin which helped and the doctor ended up prescribing me some stronger medication. I wouldn't take sleeping tablets as I wanted to be awake enough to help Liz if she was wandering around during the night. The lack of sleep impacted my ability to think and I kept making mistakes.

Taking my sisters advice - Don't sweat the little stuff. I also put off doing things that could wait e.g. home maintenance.

Booking medical check ups. I had low iron which contributed to my tiredness.

Learning to cook new recipes. It felt rewarding to develop some new skills.

Writing this. It helped me understand what was happening and putting things down in writing got them out of my head. I think I also wanted to try to get something positive out of all the pain.

Exercising and gardening.

I needed things to do in the house when it was raining or Liz didn't want to go out anywhere. There were plenty of jobs to do like cleaning, washing clothes, making beds etc. However, I needed some things that I would enjoy doing and Liz and I have never really enjoyed watching TV during the day. I scanned old photos to put into digital albums for the family and friends. Signed up for the Guardian online newspaper. Tried out new recipes, wrote some of this etc.

This isn't something I did; it is what our family and friends did. They told me I was doing a great job as Liz's carer. I don't know why, but it was reassuring to know that other people who loved Liz knew that I was looking after her well. I guess I was out of my depth at times and lacked confidence. They listened to me explaining my doubts, difficulties and concerns. They didn't have to have any solutions, just listening helped me emotionally.

← Part 4 – Final Year at Home ↩ Table of Contents Part 6 – Liz Passing Away →