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Casual Contributor

Struggling with Dad’s dementia and feeling so alone with his care

Hi all. New here and my first post. Sorry it's such a long one ... I need to vent, and I'd appreciate any advice or support. 

 

I'm really struggling with the progression of my Dad's dementia, and my family's response to it. He's been in care for about a year and is quite well cared for, but this last week his dementia has worsened and I'm not coping. I've lived with major depression for years, recently had my meds increased and also recently diagnosed (in my 50s) and started meds for ADHD. New meds have made a huge difference, but Dad's condition has me spiralling. He and I have always been really close, I'm his only biological child, and I'm feeling overwhelming grief right now. I think they call dementia 'the long, slow road to death'. I'm feeling it. 


I feel so alone in caring and advocating for Dad. My brother and sister rarely visit him - too busy. He took both of them on when he married Mum, and raised them from a very young age. They call him dad. They see his decline, yet they won't spend more time with him. I visit as often as I can, usually twice a week after work, and take him home to my place most Sundays, which is becoming more draining as he declines. My siblings decided when Dad first moved into care that they would share Saturday's week about, so Dad would go out with one of them each weekend. Since covid we can only take him to our homes, and they rarely do. I feel more pressure to be there for Dad because no-one else seems to be - except my sister-in-law, who sees Dad more than her ex (my brother) and my sister put together.

 

The aged care home and most carers there are lovely, but I feel like I am constantly vigilant, frequently noticing things like he's not drinking enough water (he has a history of dehydration and accompanying extreme low blood pressure. Dehydration has caused him infections with hallucinations, leaving him cognitively worse off each time). Recently his back pain was still acute after 2 weeks - what is being done for him? - his clothes are missing again, and there's always so much more. Dad also calls me when he is confused or distressed, often just after waking and sometimes in the wee small hours or when I am at work. I always answer late night or early morning, but can't always answer when working (I'm a community support worker for adults with disabilities). And sometimes, for my own mental health, I need to just call back later. But when he leaves messages sounding confused or distressed, it just breaks me. 

So, the following is what has left me crying for hours today. My sister arrived to see Dad this afternoon at the same time I did. We had a pleasant visit, and after an hour and a bit she left. I walked her out so I could talk to her and tell her how overwhelmed I'm feeling, and ask if she could visit Dad a little more often (she goes every 2 or 3 weeks.) She seemed annoyed - nothing new there. I said we're losing him more rapidly now. She said I know. I told her I'm feeling overwhelmed, feeling alone in this, the only one who's looking out for Dad. She said "that's because you're codependent". I said no, we're not. Yes, Dad is dependent on me, and I always try to be there for him. She said "No you two are codependent. You don't see it, do you?" There is no point trying to argue with my sister, she has a nasty streak and doesn't listen. So eventually I said see you later and went back inside. When I could stop my tears I went back to Dad, but left not long after as I was close to tears. I normally stay for 3-4 hours, because I love him and his company and because I want him to feel loved and cared for, especially when no-one else visits or takes him out regularly. 

My siblings know Dad and I are close, much closer than they are to him. We've always felt my sister was jealous of our bond, and of the fact that my parents had more disposable income by the time I was born when she was 10, so yes, they could give me more - she's often commented what a 'spoilt brat' I was, usually through clenched teeth. It's always been a love/hate relationship - she bullied me for years. I've distanced myself from her many times, including the last few months, because of all this. But I foolishly thought that this time she might show me, and Dad, some support. Talking with her only made things worse. The care home has organised a family conference next week to discuss Dad's progress, and she has agreed to come, but now I'd rather she didn't. I am Dad's next of kin, legal guardian and power of attorney, so I 'can' do it all myself. I asked her to include her, and because I thought she might be the support I so need. No such luck. 

So tonight I'm feeling even more alone and wondering if anyone else has found themselves in a similar situation? Watching a loved one decline, caring for them, with family who don't seem to care? If you've read this far, thank you. Now to drink another g&t and hopefully slip into slumber. . 

5 REPLIES 5
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Re: Struggling with Dad’s dementia and feeling so alone with his care

Hi @Chebs and welcome to the forum.

Your story is indeed a touching and heartbreaking one. While I have not lost a parent to dementia myself, I have seen it with friends and extended family and it is indeed a horrible thing. Not much I can say other than that I'm glad you've reached out, and to keep posting. It's a very supportive community and no doubt other members will read and respond in time. 

 

It seems while you're not getting the very necessary support from family, as a carer you might benefit from some carer or at least general professional supports such as counselling - if you haven't sort these already. It's a lot to deal with what you're going through. No one should have to do it alone!

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Re: Struggling with Dad’s dementia and feeling so alone with his care

Thanks @theposterboy. I appreciate your support, and I agree, I think it’s time I looked into some counselling.
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Re: Struggling with Dad’s dementia and feeling so alone with his care

@Chebs 

Dementia Australia over specific support to families which might be of help to you.

 

Carers Australis and the Carer Gateway offer a number of free counseling sessions for carers too 

 

Here is the link for Dementia Australia:

https://www.dementia.org.au/support/family-and-carers

Re: Struggling with Dad’s dementia and feeling so alone with his care

Thank you @Darcy. I will follow them up.
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Re: Struggling with Dad’s dementia and feeling so alone with his care

Hi, Your story is very similar to mine except I look after my elderly mum at home. I also work as a disability support worker and trying to juggle everything has finally made me hit a brick wall. Mum is rapidly going down hill and although I have two brothers they don't seem to care. One brother has just moved away but in the past two years although he lived five minutes away he only visited mum twice and didnt even let her know he was leaving. My other brother who also lives five minutes away told me that since she went completely deaf it frustrates him too much to try to have a conversation with her and that's why he only visits maybe once every two months. I've asked for help or just a day off but he's too busy with work or on his days off he heads to the golf course. I'm also at my wits end and not sure how much longer I can keep going. I'm sure there are many people out there in similar situations but it's really hard.

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