SANE Forums

[RachSANECEO]

Hi Family and Carer community

I'm interested to know if we have many members who have a lived experience of caring for a loved one with Alzheimer's and managing your own mental health in relation to that diagnosis?

I would be really interested to hear from you and understand your experience in terms of mental health impacts of this type of experience, what is that journey like, what sort of support is available and what do you need or would want?

@tyme and other moderators if you could tag in some of our carer leaders to draw attention to this post?

Thanks

Rachel 

[Shaz51]

@Snowie , @kate55 

[Snowie]

Thanks @Shaz51 for the tag

Hi @RachSANECEO 

My mother got diagnosed with Alzheimer's about 6 months ago so we are at the start of the journey. She has gone downhill quite fast. She lives with myself and my family.

I myself have CPTSD and MDD. I regularly see a psych and a pdoc. I'm also having ECT once per month after a 4 week stay in hospital.

We are just starting to look at what support is out there for her and myself.

At this early stage, my mum gets very frustrated at herself and what she can't do anymore. Unfortunately she takes out her frustrations on me. I guess you could call me her punching bag.

I would say that it has had a negative effect on my mental health.

[Shaz51]

Hugs @Snowie 🥰

@RachSANECEO , I have looked through the Sane forum but the other members were here years ago are not here now 

@tyme 

[RachSANECEO]

thanks so much for sharing that with me @Snowie - I am a carer too and understand how challenging that role can be from time to time between carer fatigue, the changing relationships and the enormous burden of trying to support a loved one to navigate the health system.

Do you think there is a need, or would be value in carers supporting people with Alzheimer's to be able to connect with peers around these issues?

[Snowie]

@RachSANECEO I think it would be a good idea, I think there is a big need. Even just simple things like trying to find a place that makes a clock that helps people who struggle with understanding what time it is (something my mum has trouble with). 

That support is needed, especially when we are living it every day.

I have contacted Alzheimer's Australia and they are sending out some info, but like everything else, putting things in place takes time. My mum can get 8 sessions for free with a counsellor through them. But of course it is at least a 6 month wait. No good when you need that assistance now.

My mum needs assistance but is not too far along that she needs to go into a 24hour care place. So of course the pressure is on me to do it all.

I still am unsure of how to look after her, as a carer what I'm entitled to and just how much it will affect my MH.

[Harmonium]

Hello, I am new here but my parent has severe Alzheimers now. I am their guardian and they are in full time care now. They were diagnosed 2020 and rapidly declined following an assault in 2022. It’s been a journey. Effects on me have included shock, disbelief and acceptance…particularly now it’s more obvious. At first my parent seemed the same to me but just did and said odd things. Now they struggle walking, talking, drawing. Sometimes my parent gets cross over the colour of pencil I choose when we colour in together. It’s kinda cute, being chastised by them and told to go to the garden and think about what I’ve done : ) because obviously, we’re talking about a colouring in book and pencils. So I experience sweet moments. Like when they look me in the eyes and say they love me…when I was wondering if they even know it’s me. It’s like same face, same voice, different person - but every now and again I see them register things again and so I just take every moment as it comes. You never truly know what they are registering. Sometimes the facility doesn’t do a great job and I am glad I can advocate and fix things that need to be improved to benefit the daily life of my loved one. I could go on…this is life now for a season.

In terms of how it affects my health. My diagnosis is bipolar, complex trauma, ptsd, anxiety. I have developed multiple autoimmune conditions, one thyroid condition causing my heart speed to change and consequently anxiety is a learned experience following that. I’ve used brain plasticity to reduce the major lifestyle implications over time and now it’s just generalised. I used to hit my head and wouldn’t leave the house. I used to have panic attacks in public that felt like epilepsy. I’ve improved massively, but will always walk a fine line with stress. Now, I just accept I’m a bit weird and it’s done wonders for my mental health - instead of trying to fit in, I do my own thing - live my own life. I’m currently disassociating a bit more than usual, still functioning, but overwhelmed and so I guess it’s like stimming. It’s how I cope. Sleep is disordered - that’s just normal. I improve my sleep habits through hard work and then I slip - it’s cyclic. It’s like a compulsion. That’s normal for me. I accept it and manage to function, but the toll on my body and life is something I’ve had to accept and it’s limited my choices significantly. 

In terms of being someone with all these barriers and issues, stepping up for my ailing parent has given me a new way to see myself. Responsibility has given me a focus on something other than my health and I think it’s beneficial. Somedays, it’s a heavy burden due to the various responsibilities but I wouldn’t have it any other way. My parent is declining and I cannot hit pause, life goes on and this process is changing me because I see things differently now through this new lens. It’s incredibly sad of course, to lose a parent while they are still in the here and now. To not be able to reminisce with them about days gone by. But we make new moments together and I feel they understand and are content with my company beside them. Putting a blanket over their legs to keep them warm. Bring them fiddle toys to do something with their hands. I am happy these days if my parent is able to self feed, since there have been occasions I’ve had to feed them which is such a role reversal it expanded my mind in ways yoga could not. 

Everything has pros and cons and so in this time of loss, I’m trying to, no I need to find the brighter side too. Because this is my story, my parent and I’m writing this chapter of my life and I want to live the change I want to see in this world. I’ve cried through too many chapters in my book. It just gives me puffy eyes now. Maybe it’s something picked up through Covid…to seek out moments of joy.

So even through the anguish of losing a parent, I can be present beside them. If I fall apart, I can’t do that. And I have to do it. So there’s a kernel of hope that the experience so far is making me stronger, even as someone with a plethora of health conditions myself…

I feel like I’ve got this!
That said, I can see and feel the impacts on my body - which is why I’m here, to try to improve my own self care, with more health promoting daily rituals and lifestyle habits. Somehow. Because that’s what has slipped as I focus on caring for family. 
I’ve enjoyed writing this : ) Thank you for reading!

[Shaz51]

Hello and welcome @Harmonium 

@RachSANECEO , @Snowie 

[Harmonium]

Thank you @RachSANECEO and @Snowie

[RachSANECEO]

Hello from me and welcome @Harmonium @Snowie and thanks for the tag @Shaz51 

really appreciate you sharing your experiences here. 

I’m interested in your views on what sort of role could these forums play in connecting carers with similar experience together?