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Early Onset Dementia - Caring

BPscully
Community Member

Hi there,

It's been a while since I've posted. Firstly, thank you to everyone for your help on previous posts. I've been mostly coping a lot better, my mum and I have gotten into a better place coming to terms with further deterioration but better routine!

Mood wise (for the both of us) we're in an unpredictable territory now, where some days are great- we sing and harmonise in the kitchen to Abba and have a bit of a dance. Or I'm trying to find ways to distract or avoid mum because she's uncontrollably crying for hours and it can be impossible to stop this no matter how much diversion is tried.

Sometimes I have days where I feel like giving up, I can't take it any longer, then the next day rolls around and things are better. My partner worries I may be suffering some PTSD from a few of my mums behavioural issues and recommends to see a professional, it's just so hard to find the time for myself. The only person I really talk to is my partner, I'm worried this is having a toll on our relationship. I assume this is why he suggests this too. I really need to demand more time for myself for the sake of our relationship, and even the relationship with my mum.

My fuse has gotten less short, but occasionally it can come back. I know when my headaches start becoming regular and I get easily irritable and short, I know I'm about to burnout. This is kind of starting to happen now.

I'm not really sure if many family or friends are aware of how things are, or whether they really understand what being a caregiver is like, or being a person with Dementia. I really appreciate the locals in our area though, we live in quite an elderly area surrounded by parks. Last week a lady down at our local shops saw my mum and i holding hands like we always do, and stopped to tell me how much of an excellent job I was doing and that she often sees us walking- that she had spent 8 years of her life doing so as well and she didn't regret a moment. This made me feel really appreciated and understood.

2 Replies 2

geoff
Blue Voices Member
Blue Voices Member

Hello BPscully, it's not easy looking after someone you love who may be developing dementia, because they have no idea of why this is happening and are unaware of the changes, but however, it affects the carer who is looking after them, who is not prepared to know how they should handle this situation.

There will be good days, as you have mentioned, but in turn, there will be other times when you simply don't know what you could do to help your mum.

People may see you and your mum showing each other affection, but they don't see you when it's being a most difficult time, and at best it's hard to even disclose what's happening behind closed doors because they may not believe you, only you and your partner realise the depth of this situation.

If you could organise your mum to become a member of NDIS that funds the costs associated with disability and is determined on a scale, so can I suggest you look into this.

I know someone who has done this with their partner who also has dementia and proved to be valuable.

You can't forget about looking after yourself and there are 2 ways of doing this, see your doctor and ask the people at NDIS who may be able to assist you.

My best.

Geoff.

Sophie_M
Moderator
Moderator
Dear BPscully,

Thank you for sharing your experience and writing about what it takes to look after your mum who is struggling with developing dementia. We appreciate your openness and courage to reach out.

We understand how difficult it can be for you to support your mum while you and she are trying to come to terms with her daily changes. We are glad to hear that you're coping much better and that your mum has established a better routine since your last post.

We also hear that the main struggle currently is your mum's moodswings and behavioural issues and the minimal support you are getting. Even though your partner is helping you in many ways and members of the local community are kind and understanding, it feels like you are soldiering through this alone.

We understand that sometimes it is almost impossible to find time to look after yourself or devote enough time to your partner or other vital things in your life as a creer's role can be demanding and overconsuming. However, you mention burnout, which is concerning as it is much harder to rrecover from burnout than prevent it. If you would like some help finding mental health support to deal with the carer's fatigue, we recommend contacting BeyondBlue Support Service which is avaible 24/7 by phone on 1300 22 4636, or via webchat at http://beyondblue.org.au. Our counsellors will support you and point you in the right direction for help in your area.

In addition, there are a few links to resources that you might find helpful:
http://dementia.org.au
http://dementia.com.au
http://ndis.gov.au
If you are interested in practical support around dementia.

You're very welcome to reach out anytime but particularly when you're irritable and short, as a burden shared is a burden halved.

Thank you for posting again on our forum, and we hope you keep sharing with us whenever you feel up to it.

Warm regards,

Sophie M.