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Big changes & tough choices as a carer

This year has been quite a ride and I wondered whether I would ever share what’s been going on because it’s been raw, personal, and frankly, really difficult. I’ve decided to share our recent upheaval because whenever I post the hard stuff, I’m almost guaranteed to get a message from someone who has been struggling with something similar. As humans we feel less alone when we connect with others facing the same challenges. That’s the basis of this website really. We wanted to share our experiences with Braeden to help others. Braeden has always been the focus but over recent years I’ve touched on the fact that I also care for my elderly parents and the challenges of having multiple caring roles, the ridiculous amount of admin and the guilt attached to never feeling like I’m doing enough. My dad’s advancing dementia has certainly contributed to an increasing care load. Keeping mum and dad in their home has always been paramount and recently everything changed. It still leaves me emotional and teary as I type this, but I’ve decided to share it nonetheless.

Big changes & tough choices as a carer

I’ll have to rewind to October as this was when everything changed in a heartbeat. We were celebrating Amelia’s 21st birthday with my parents. Amelia isn’t one for parties or being the centre of attention, unlike Braeden, so it was just a simple lunch at our house. We had a tropical theme as unbeknown to Amelia her gift from us was a trip to the Cook Islands. We’d just finished lunch and were about to open presents when my mum collapsed. We immediately called an ambulance, much to mum’s horror when she came to. Like Amelia she doesn’t like a fuss. We’d been joking with Amelia that we were going to have a surprise party but never imagined that on the day there would indeed be surprise guests in the form of two lovely paramedics. There was quite a bit of curiosity from our surprise guests as they were greeted by us still wearing our dress up grass skirts and leis around our necks. The paramedics checked mum over and despite not considering her an emergency they recommended she go to hospital. We left the cake uneaten and the presents unopened and hoped it would be a quick check over in hospital and we’d be back to the celebration. That turned out to be incredibly optimistic and in the end mum was in hospital for five and a bit weeks. At first the doctors thought it would be a few days but that extended into a couple of weeks and on and on it went.

Big changes & tough choices as a carer - Have Wheelchair Will Travel

We’d been providing a high level of support to my parents but without mum at home, Dad couldn’t be by himself, so he moved in with us. I set about trying to secure carers to give us a break for just three hours a day but there is such a shortage of care workers it led to his aged care provider calling in agency staff. The quality of the workers was hit and miss with more misses than hits. We had one terrible incident with one worker that left us in disbelief. I’ll say it again, care work isn’t a filler job, you really need to have empathy and a caring nature to do it. As a result, it seemed more stressful having the care workers.

Big changes & tough choices as a carer - Have Wheelchair Will Travel

Once the hospital doctor started talking about rehabilitation to get mum’s strength back and that process taking a minimum of 14 days I realised that we couldn’t keep going with caring for dad and juggling our normal life. A friend had been giving me a nudge for some time about looking into respite and offered to do a ring around. She found that the home where her father was living had space and arranged a tour. As my friend and I are walking buddies I’d heard for years how happy she was with the home and staff so I knew that it was a good option but knowing my dad’s view on respite for Braeden, I felt torn about the idea. My dad was sent to boarding school as a child and I feel that shaped his opinion about any care other than family care but I felt beyond stretched going to the hospital once or twice a day, caring for Braeden and my dad. Amelia and Hubby were incredibly supportive and did as much as they could to assist when they weren’t working but it was a lot. Dad’s support coordinator advised that using three hours a day of care he’d soon run out of funding, so respite was the only option.

Big changes & tough choices as a carer - Have Wheelchair Will Travel




The aged care facility was lovely and the staff reassuring but my dad’s first response was “I want to go home”. Dementia may rob people of their memory but they still understand what is going on. People underestimate how many of the nuances of life are understood by people with dementia. Dad knew it was an aged care facility and he was having none of it, which of course made everything so much worse for me. I cried and cried. My dad has always been my supporter, protector and dream creator, so the thought of doing something he wouldn’t choose seemed like the biggest betrayal. I felt I was in an impossible situation but with much encouragement from others I determined two weeks of respite wouldn’t be that bad, surely. With the advancement of dementia time hasn’t meant much to dad but on the day we admitted him to respite he asked how long he would have to stay and when I said two weeks he was horrified. On the one occasion I wished time was meaningless he understood two weeks to be a long time. It’s so typical of dementia, it never delivers when it is convenient or needed.

Big changes & tough choices as a carer - Have Wheelchair Will Travel

Staff suggested I wait a week before visiting dad to allow him time to settle so I sent a family friend during the first week to check in. I also sent a five page cheat sheet giving all dad’s likes, dislikes, ways to calm him if he is upset and anything else that I thought would be helpful to staff. Given Braeden is non-verbal I’m used to providing information to assist with someone who may not be able to express everything they want to say. I called the aged care home three times a day and staff were exceptionally lovely about reporting on what was happening. They needed to hide dad’s suitcase after he packed it ready to leave on the first afternoon but as time went on he settled. I was happy to hear he was eating and sleeping but somewhat infuriated he was eating food he would refuse if I presented it to him. After years of tailoring his meals to what he liked, often cooking something different for him to the rest of us, he was now eating everything. I was obviously pleased he was being accommodating but I also could have saved a lot of time and effort over the years if he’d done that at home.




Mum is now home from hospital but she is still not strong enough to care for herself and my dad. It is now that we grapple with the decision about ongoing care for dad. Dementia sadly only gets worse so to bring him home would only be temporary with the inevitable result being returning him to care again. Dementia is a thief, taking away a person’s memory, confidence, and robbing family of time with their loved one who is often well physically but lacks their original cognitive function.

Big changes & tough choices as a carer - Have Wheelchair Will Travel




It’s odd not having dad at home. Mum, dad and I were always the three musketeers, travelling together when I was younger and always spending time together. When Hubby and the kids came along it was then the six of us against the world. In some ways it is a relief not dealing with the daily struggles that come with dementia but I’m an only child and we live next door to my parents, so it feels like a loss. We’ve always been close and had multiple visits per day. Our lives are intertwined, mum and dad being an integral part of our day-to-day lives. Our kids have been so lucky to have such involved grandparents and I’ve been an incredibly loved and supported daughter.

Big changes & tough choices as a carer - Have Wheelchair Will Travel




People must make these decisions every day so of course I know we are not special. I also know that many of our Have Wheelchair Will Travel community juggle caring for someone living with a disability, or live with a disability themselves, while caring for ageing parents. It’s such a difficult time in life when you want to give back all that love, support and time but you don’t have as much as you’d like to give because of your situation.

I’ve been extremely fortunate as I’ve said many times to have Hubby, Amelia and my cousin share the caring to enable my parents to stay at home. It’s not just about them sleeping in their own bed but it’s having food that they like, their belongings around them and independence (even if it is somewhat more limited). I also feel so grateful to have had the support of my walking buddy who knew when to ask the question, “what can I take off your plate” and the sensitivity to go about it in an encouraging way.

Beach lovers gift guide - Have Wheelchair Will Travel

Amelia was thrilled with her 21st birthday gift when she did get to open it. Hubby, Amelia and I had an amazing trip to the Cook Islands where we were able to celebrate the wonderful person she is while giving her our full attention

What’s the point of this post? Well, I guess it is to say if you are struggling with being everything to everyone, I see you and understand. Caring is something we all do out of love but it is challenging not only timewise but also emotionally. I would have once said take care of yourself if you are a carer but I am abundantly aware that at times it is difficult to even find the time to do so. Instead, I’ll say if a friend or relative offers to take something off your plate, it is not a sign of weakness to accept, it will in fact assist you and those you are caring for. It might just make the friend or relative also feel good that they could make a difference.

Here’s some other thoughts I’ve had on caring, admin and carer guilt –

The incredible admin involved in living with a disability or caring for someone with a disability.

Parents and carers need more help.

Carer guilt




 

 

6 thoughts on “Big changes & tough choices as a carer”

  1. I have always thought of you as one of the most inspiring and proactive people I know. Your post was heartbreaking and heart warming at the same time. How fabulous is Amelia and cousin to step up and make sure each day can be special. You know that we live around the corner so please call on us if you ever need extra help
    Lots of love 💕
    Ylana 🌺

    Reply
  2. Such a very difficult time for you. So glad you have family and really good friends to be your backup and listening posts. Prayers for you as I know it is so difficult to make these decisions. I didn’t make with my parents but with my older brother who now is very happy in heaven. I miss him every single day. Like you, I felt I had never done enough for him and he was thousands of miles from me and I couldn’t visit in home during the pandemic like I had at least 2x/year previously.

    Prayers for you Julie and your MOM and Dad. I know it will be difficult for your kids too as they are so close to your parents–both a joy and a sorrow in this case. Barbara Wichlan

    Reply
  3. My mother had senility and dementia before she died in 2016. She always knew me though. I was still working outside the house and had my two disabled sons. Prayers for you and your family.

    Reply

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