Oh Petronella,

Your strength defies me. Your stubbornness growing up used to frustrate me as I mirrored it right back at you. I admire you more than you will ever know. If this is the only way we can talk, then I will continue to write.

 I got a call from mums nursing home the other week telling me how she now refuses to eat and bathe. Her last shower was 7 days ago.

What?

This is the woman that would scream blue murder at how “a lady should ALWAYS be clean at ALL times!”. “why do you choose to walk around looking homeless?!” she would scream at us at the sight of a single hair out of place.

She believes she’s already had a shower and therefore doesn’t need another. She’s also gone 5 full days with not even a nibble of dry bread. She won’s drink Sustagen, but will have a tiny sip of tea. The aggression is increasing even the gentle persuasive prompts no longer work. Could I help?

I have ALWAYS been able to sway mum. If you speak to my older siblings, they’d tell you how it was always easier to get Amanda to ask mum for permission. Amanda always got away with everything. Mum always sided with Amanda. So this time, I thought I could.  I turned up at 7am the next day to see if I could gently coerce her into having a shower. Boy was I wrong. There was nothing that could’ve prepared me for what met me.

I was the biggest traitor that ever walked this earth and how could I treat her like such an invalid. None of her children would EVER and I mean EVER talk to her this way. How could I call myself her child and lie to her about her not bathing. What an insult………it begun and lasted probably only a few minutes but to me, it felt like a lifetime.

 “Who are you anyway and what gives you the right to dictate terms to me?, I’m an ducated woman and much older than you. You stupid woman.”

“the owners of this place need to stop paying you, because you are a rude and useless employee!”

“you are a worthless piece of s%#, get out of here”

“You are so rude, you need to get the hell out of here and get my daughter Amanda”

“how could you forget to love me ma?”

My inner child voice screamed deep in the core of my chest silently. I still remember how you’d call me you’re “Amy-Lou”. Yet here you are today, looking at me like I’m an absolute stranger here to harm you. You look at me with such hate and rage.

Silence from my end. As I stood there stunned.

I guess I will just keep loving you and I, for the both of us.

 My 2 cents of lessons learned that I wish someone had told me:

So what do you do when your loved one gets aggressive? What do you do when they stop eating or bathing. I hope they help you.

Bathing

Don’t force your loved one. If she doesn’t want to bathe and her body odour isn’t offensive or affecting her health. Let her be and try again later. But keep trying gently. There could be so many different reasons why a Parkinson’s & dementia patient refuses to bathe.

1. Ask them why they won’t bathe.

Mum is a grown woman that still needs to be respected and treated like one. Mum didn’t want to shower because she actually believed she had already had a shower, in fact in her mind she already had two showers that day.

“We watch our water usage in Australia, so why should I waste water by having 3 showers a day?”. That’s true, mums previous routine was a morning shower and one before bed for as long as I could remember. In her mind, this task has already been done, therefore there was no reason for another..

2. Try persuading them by giving them a reason.

I resorted to buying her new undergarments and asked her to try them on to see if they fit. I’d tell her that Amanda was coming or her deceased parents that she talks about were on their way. Worked a charm – for a very short period of time.

3. When she was distracted, I did ask her if she disliked water. Mum revealed that she lost her childhood friend when she was around the age of 10 to drowning. So there was childhood trauma associated with her not wanting to bathe. Sponge bath it was. Past traumas can also creep up depending on where her mind was in her memory library.

4. Mum also doesn’t like the feel of shower water on her skin. She has developed hyper sensitivity to touch. Dementia affects people in so many different ways.

We now shower, or sponge bath 1-2 times a week. I celebrate when it can be done without a fight. The nurses are amazing.

Food

This one was tough. I will admit that I am still ashamed of myself for getting angry with mum for not wanting to eat. I tried everything I could think of to get her to eat and she just wouldn’t budge. She could swear that she had already eaten and also was not hungry and would sit there with her arms crossed and out right refuse to eat. The aggression would start. Please try not to speak to your loved one like a child. Despite how frustrated and tired you feel. Just walk away when it gets tough. Boy did it get tough. Why would she not eat? She was killing herself for not wanting to eat.

1. Knowing what their favourite foods are can help. Switching things up can help. I don’t know about you, but I have 3 children and never had time to make 5 different meals to suit a fussy eater.  But I gave this all I had with the help of the nurses. The nurses would try different foods. Sweet, savoury, warm, cold, dry – you name it, we tried it. Her weight is slowly dropping, my patience is still wearing thin.

2. We would take mum for walks to try increase her appetite, but due to her lack of food intake, her energy levels, she would decline most times.

3. I would turn up at meal times to eat with her. I even brought my children with me to sit round and eat as a family. But she would just sip a tiny bit of tea. When I reminded myself that my mother is an adult, a human that deserves everything the world can offer and that she is willing to take. I asked her why she didn’t want to eat. She wouldn’t even snack for the sake of the kids. She said the food tasted horrible and would get quite angry. Mum had lost not only her appetite, but she had also lost her sense of taste. Mum also developed mouth ulcers that hurt when she ate. She associated the pain with food and therefore refused to eat. Today we celebrate at any amount of food she eats.

It’s a waiting game. A praying game. I celebrate when I get a call that she had one bite of food.

My mother has multiple reasons as to why her appetite subsided. There is no quick fix. Being patient is hard but the only path to conserve my own sanity. Our loved ones are still people with emotions and deserve to be loved at all times.

The most important thing is the comfort of our loved ones. Stressing them out over food or bathing becomes counter-intuitive if it upsets them. So I stopped forcing her. As much as it breaks me to watch my mother slowly deteriorate, it takes a longer to settle her.