Lived Experience Forum

[Cherpieus]

Hi All,

I thought this might be a good place to share about struggles people may be having about Christmas. For many it's a great time but for a lot of people it brings a lot of stress and emotional turmoil.

My struggle at the moment is that my Mum is in a nursing home dying of a brain tumour. She is unable to move at all (totally bedridden), can't communicate and sleeps most of the time. My Dad takes care of her at the nursing home from 7.30am until 7pm every single day. He feeds her pureed food and makes sure she receives all the correct medication. He's been doing this in the nursing home for 8 months now without one day off. The only time away he ever has is if he has a medical appointment and I go to take care of Mum.

Yesterday when I was visiting he said he really wasn't looking forward to Christmas. He will be coming to my place on Christmas Eve for a family Christmas dinner (after he leaves the nursing home) - without my Mum of course. On Christmas Day my husband and I will go to the nursing home to spend time with them both there. My Dad is so upset how different this Christmas will be. It is breaking my heart seeing them both suffer so.

Hope to hear what you may be struggling with.

Cherpieus

[Former-Member]

Hi Cherpius,

I'm so sorry that you're mum is in such a terrible way. Your dad sounds amazing to be able to continue to be there and look after her every day, that must be taking a huge toll on him. Is there anyone else who you could both trust to be there with your mum for an hour or two so you and your dad could go and do something nice together, just to help recharge a little bit. 

Christmas is always a a tricky time for me, i dont have great memories of Christmas, and  now, even though i try really hard to make it a great day for my kids, its really lonely and exhausting having to be the sole parent and have all the happy energy and do everything with and for the kids on my own. They both want my undivided attention and it gets really hard. Also this year, I'm so broke and i havent been able to save or anything, just getting by normal weeks! and i'm worried they're going to be a bit disappointed as well which is hard on them. I feel like i'm constantly letting them down. 

LJ

[Tight-Control]

Hi all,

I came on to write about the strsses of christmas . nice to see someone else was already thinking the same way.

It sounbds like your Dad and family will have a quiet one . enjoy the moments you have left. they may not feel great now but will be very healing for you inthe future. i remeber losing my mother to a Brain Tumor many years ago. Looking back now the times I spent with her near the end when she was not responsive are amongst my most treasured and uplifting memories. It didn't feel that way at the time though. Alow yourself and your dad and your mum just to accept the time as it is .

this also applies to everyone wether the stress is strained relationships with family due to illness ( menatal and physical) . Allow your self to be in the moment try not to over analise every deatil , if things break or get burnt or poeple annoy you , just accept that that is what the real world is like. In the end i give it a wry smile and move on.

Things I try to avpid are excessive alochol and also watching all the " Hollywood /Disney " everythng is perfect or works out movies and shows.

Spend time with your loved ones be they family freinds or just you and your cat.

Peace and Joy to you all.

[Cherpieus]

Hi lisajane,

My husband and I occassionally take my Dad out for dinner as that's the only time he's willing to leave Mum. We're doing that this Friday which I'm hoping will be good for him.

I'm sorry to hear your Christmas is going to be lonely and difficult. I understand having to put on a happy face, especially for your children. How old are they?  As you know the thing kids want the most is attention and it sounds like you give them a lot of that so hopefully they won't be disappointed not receiving big gifts as long as they get time. Of course this is exhausting for you! It is so very hard to balance taking care of yourself at the same time as being there for your children. In the end we only do what we can do and be comforted by the fact that kids are very forgiving.

As you mentioned you are struggling financially I hope you don't mind me suggesting you contact Anglicare and/or The Salvos to apply for a Christmas food and toy hamper. Some people are reluctant to do that I know but at certain times it can be very helpful and nothing to be ashamed about.

Cherpieus

[Cherpieus]

Hi Tight-control,

Thanks for your advice regarding acceptance and being in the moment. I'm sorry to hear of the loss of your Mum from a brain tumour as well.

A very good point about those 'Disney' movies where everything works out! I will be avoiding those 🙂

Cherpieus

[Appleblossom]

Hello @Cherpieus

I echo other posters and am impressed by your dad's commitment to your mother's care.

It is so difficult coming to terms with the death of a parent.  I spent a lot of days at her nursing home and @Tight-Control is right there is something healing even though it is very sad ... maybe its being in touch at a real level and being aware of their vulnerablility and basic humanity. 

My mother died of a lung cancer on christmas day last year.  So christmas day will always be a mixed bag for me ... I think she held on for christmas day when she realised it was coming close ... she was such a devoted christian at the end of her life ... she wanted us to keep nightly vigils ...

At one of my visits I managed to go out to dinner with my brother from Sydney ... that was a good memory ... just an hour out ... there was a man who visited his wife everyday at the her nursing home and after the wife died, he kept coming back to say hello to other patients ... it kept his routine alive and gave him  friendly and needy faces who appreciated him ...

Find a way to make to memorable and meaningful for you ... perform an action or ritual that she would have liked ... in her memory ...

[NikNik]

Hi all,

@Cherpieus I'm so sorry to read about everything going on for you.

I wanted to let you all know that our December Topic Tuesday on 15 December will focus finding the joy in Christmas.

It's such a big topic that impacts so many of us. I hope you all can make it.

Nik

[Former-Member]

I'm dreading xmas.

[NikNik]

Hi @Cherpieus @Appleblossom @Former-Member @Tight-Control  and @Former-Member

Just letting you know that it's confirmed that tomorrow night's Topic Tuesday is 'Finding the joy in Christmas'

It kicks off at 7pm AEDT.

You can find the discussion here

I hope you can all join us 🙂

[Former-Member]

Hello @Cherpieus, just resurrected your thread as the circumstances are similar to mine and Christmas next week is not looking good for our family. I'd like to know how tjongs are for you noe x2 years on? How have you coped? I got a vahue tx from my bro4 that mum was admitted to palliative care late today. Very odd for Sunday. Only yesterday we were talking and she wanted me to travel 1200km for only x4 days to help set up her Christmas tree & cards. (she's very weak & thin now). She's been complaining about things I moved ever since I last went to help 6wks ago. I want to help but can't take the abuse, especially knowing there's x4 other siblings round the corner, all stabbing each other in the back but there at least. Im not coping