Overwhelmed - sole carer of a mother with psychological issues and early onset dementia

[mimosa]

Hi everyone,

I am in my early 20s and my mother in her 50s. My mother has been struggling with delusional disorder for the past few decades. I sought some medical support for her but she refused to go see the doctor so she is undiagnosed, and has never received medical treatment for her delusions. 

She also has mood swings, and on her bad days it affects her so much that her voice barely comes out and sounds like a whisper.

She also recently started showing signs of early onset dementia. She also refused medical support for this, when I suggested a check-up, so she is not receiving any treatment. I feel so alone and overwhelmed as I realise how much she is struggling and will struggle, and how much I struggle by being her carer. 

I am the only child, she is divorced, is not close to anyone in her family and has no friends she can turn to for support, so I feel a huge sense of responsibility to care for her. I have a history of depression, and while I am much better now thanks to the help of my counsellors, I cry almost daily when I spend time with her and noticed that it really affects my mental health. 

Because of financial struggles, she wants to move in with me soon and I feel overwhelmed by the prospect of it as I know my mental health will suffer once we move in together and I am scared I will act impulsively to lead to an irreversible consequence once my depression kicks in again. 

I feel daunted when I think about the near future living with my mother and having have to care for her while I feel like no one understands the situation. I feel a sense of responsibility so huge it is overwhelming. Are there any support services I can seek support from to continue looking after her? Are there any support groups for people in the similar situation as I am? 

Any help would be appreciated. Thank you for reading

[tyme]

Thank you for sharing. Is there some assisted living she can access? @mimosa . It doesn't sound healthy if she moves in and you do not think you will be able to support her needs.

I hope there is a solution. Would you be able to ask her doctors/therapists etc?

[Appleblossom]

@mimosa 

I am not sure what area you are in but contacting council or carer bodies like https://www.tandemcarers.org.au may help advise and support you.

It does sound like you need some boundary for your own self care so you do not both go downhill.  Not sure what your circumstances are re work or housing... but keep reaching out til you get what you need.

[Bea]

Can you talk to your own GP about your situation? There may be a Councillor service or Social Worker that can assist you. 

You may be an only child, but this does not equate to you being your Mother's only support person. She will need a team.

It is very hard when people refuse help. Try suggesting you & Mother go see the GP together. For help for BOTH of you - as a team, to find others to ADD to your team. 

Lead her towards others that can help. So that professionals can meet her, hopefully diagnose & treat her. In the longer term, look at her housing needs & add more support. 

[mimosa]

First of all thank you so much for all your messages - I felt so alone and helpless about this situation and your messages made me feel supported and made me feel able to face the situation. I am so grateful for the existence of this forum and for all your thoughts. 

Due to being completely unaware herself that she is struggling with psychological disability and early onset dementia, she does not want to be a part of any assisted living facilities and does not want to be in aged care in the future either, when she is older. 

She does not want to see any doctors or therapists so there really is no one who looks after her professionally or personally. I am the only one who cares for her and I am lost as to what to do when we definitely needs help. 

[mimosa]

Going to see the doctor together was my original plan. I went to see her GP by myself at first, and talked about my mother. The GP gave me advice on how to persuade my mother to come see her together, and I followed all her advice and we actually were able to go to the appointment. Although the GP was very careful not to provoke her and did not give a diagnosis in front of her, as soon as the appointment ended she became hysterical, cried like I have never seen before and verbally abused and blamed me.

After a few months, I went to another doctor who has special interest in psychological health, and followed his advice again and tried to go see him together with my mother, but this time she absolutely refused and I ended up going to the second appointment by myself, without my mother. 

It is indeed very difficult when they refuse help - I feel as if I can only watch her suffer and not be able to do anything about it, while I suffer too...

I had no idea that my GP may be able to help by connecting me to social workers - I have a new GP now and will definitely talk to her about this. Thank you for your suggestion.

[RosaG]

I really feel for you. I am in a similar situation with my son. It’s very hard to deal with.. Mostly I feel you should be able to have your own life and NOT be the sole carer for your mum. I hope you find the right support! Best wishes.

[AMAB]

@mimosa 

Hi, 

i know this is about a year late, but thankyou for sharing your post. I feel like I relate to most ofit:

a parent who doesn't know they are suffering, who refuses medication and has no insight into her own delusions or MD therefore remains largely untreated for decades. My mum did just recently receive involuntary treatment which was a shock for everyone especially her. And she's back to blaming the system and the "other".

Its just so very difficult. She lives alone, and needs more care but her MD makes it impossible to get carers in there for her. She's very suspicious of them. I can't send her letters or parcels as she has some sort of anxiety about what the 'other' will do to the package. 

It is not easy on the kids of parents suffering with MD. the feelings of overwhelm and guilt. I really hope you have made progress in your very complicated situation over the last year. 

[tyme]

Hey @AMAB ,

Thank you for sharing your thoughts on this. Your insights are so valuable as it reminds us we are not alone. Being a carer can be hard at the best of times. Let alone seeing them regress slowly can be exceptionally difficult. 

As carer's, self-care is so important. We have many members who are carers on the forums here and being able to set boundaries to protect one's mental health and wellbeing is of utmost importance.

Do you have supports you can give you respite @AMAB @mimosa @RosaG @Bea ?

[Harmonium]

Hello and thank you for sharing. It sounds like you are working through options as I started doing a few years ago with my father after he was diagnosed with Alzheimers. At a certain point things begin cascading…but for a while I felt responsible but like my hands were tied. Such a mixture of emotions when someone isn’t well and a real flip/role reversal for parents and kids. My brother also has schizophrenia/HIV and my mum has 11 co morbidities, making it a lot of work keeping up with all their needs. Sometimes I just can’t as I have a young family as well. How to cope? Guess that’s why I’m here. 
I want to share a few things that helped me:

. Carer’s Gateway - well worth a look

. Alzheimer’s association 

both provide specialised information for what you’re facing and local programs likely in your area. 

The fatigue and brain strain take its toll, so your best next step is to build in your own wellness. Over time, you will be your loved one’s best asset and advocate, which you can’t do well if flatlining/overwhelmed/etc. So join a gym - or Fitness Plus app with Apple (which is what I do for $9.90 per month) to keep myself physically and mentally stable. It helps so much to clear my head so I can make decisions with clarity, rather than driven by fear, obligation and guilt. 
When a loved one loses capacity it’s gradual and then swift, I had to let things unfold as two loved ones were still determined to do it their way…dysfunctional as it was. If they are housed, clothed and fed, then let them do it their way until they can’t at all. If it’s not your way, probably best not to live with them because it will overtake your life. When they ‘need’ assisted living, it is available for everyone but the system is a whole new world. I used A Home For Mum and Dad to find and organise care for my father and they were amazing. 
It’s a long road, not a marathon, so put aside a few hours a few times a week to tackle issues as they come up and just wade through the processes. 
Don’t be afraid to let some things run their own course, but intervene if somethings not OK or not safe, naturally. 
I just want to stress that you can live your own life too as well as taking on these extra tasks involved with caring for loved ones losing capacity. 
Structure your life accordingly, allocate time for duties and build in me time too. 
Your life changes, but actually being their for loved ones as they lose capacity has warding and beautiful moments too. It’s a whole life cycle, a natural progression and remember your loved ones are blessed to have people who love them throughout change, because many are not so lucky. Make quality moments wherever you can and cherish them.