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Something’s not right

Shasan
Senior Contributor

Multiple carers - control and confusion

Hi team,

 

I'd like to get your input, views and advise on this situation I'm facing as a long-distance carer.

 

My mom's still experiencing confusion from schizophrenia. She seems to be doing most of her daily tasks, but the one pattern still ongoing is she wants to leave the house - so she packs you things or goes to neighbours and tells them it's her house. It's heartbreaking and very sad. 

 

My thoughts were to ask her psychiatrist if she's displaying symptoms of Alzheimer's or dementia because confusion, memory loss can also be a big symptom that overlaps. 

 

I'm not there in person so I have very limited information on her condition and my family (my dad and brother) are controlling the entire situation, but I feel they don't care enough to think about alternatives and help her. My dad is controlling me from calling her psychiatrist because he's afraid my brother will back off if I get involved. (My brother's narcissistic so everyone walks on eggshells around him). I get my dad's worry but he's guilt tripping and blaming me for complicating things when all I want is to ask the doctor how we can rule out other issues with similar symptoms.

 

I think I'm being very reasonable, polite and it's my right as a daughter to check with my mother's doctor. 

 

What should I tell my dad to make him understand? He's too anxious about my brother for him to listen to me. He just forces me to adjust to my brother's shenanigans which I refuse to do. My brother stopped talking to me over some issue so I'm not interested in forcing my opinions onto him as he's chosen to stay away. 

 

How do you handle this situation when there are multiple carers? Am I doing something wrong, am I interfering or complicating the matter - I don't think so, but I would love some validation or feedback if I truly am. All I want to do is call her psychiatrist and ask him to rule out other conditions so she's getting treated for the right stuff!!! 

 

My father's anxiety, my brother's incapability is affecting my mother's health at the end of the day. I don't trust them and they're not letting me be involved - how can they stop me like this? I'm shocked at my father's behaviour..

 

Help, I don't know what to do next. 

7 REPLIES 7

Re: Multiple carers - control and confusion

Hi @Shasan,

Are you able to contact your mum's psychiatrist or GP directly? Even if they can't disclose any information about her maybe you could just ask them to consider if dementia is a possibility?

A close family member of mine had Parkinson's Dementia and from my lived experience it's something that can be dangerous in terms of safety (before diagnosis my family member lived alone and kept putting on the gas stove and forgetting about it). So to be cautious I would think if your mum is showing some typical signs of dementia it would be good for someone in your family to ask a professional to assess her for it.

Sending you and your mum best wishes,

FloatingFeather

Re: Multiple carers - control and confusion

@FloatingFeather Thank you for your reply, yes, I'm trying to reach out to the doctor directly - but my dad is refusing my help. I've decided that I'm going to reach out and chat to the doctor irrespective of his irrational tantrums - it's much more harder than it needs to be but I can't control how he behaves. 

 

That example is scary and it's so sad. Hope they're doing better now and have care? My mum has been keeping the pressure cooker on without water in it! Forgetting to switch it off, confusing someone else's house as hers - I feel there are a lot of signs. 

 

I'm trying my best to ignore my dad's gaslighting that I'm "complicating" matters if the doctor asks them to do extra tests & his anxiety that my brother will back off if I get involved - both of these have nothing to do with me or my mom!!!! If you have any tips on ignoring other people's irrational behaviour, it'll be really helpful to hear and try it out 🥹 I'm trying to tell myself that it's just words and means nothing - it's infuriating only if I give in and acknowledge what they're saying or analyse why they're saying that. I am just going to ignore what he said and move on, for my own sanity. 

 

Informing and talking to the doctor is the right thing to do as no one there has thought of it, yet. Boy! Will they tuck their egoistic tails if something comes up.

 

 

Re: Multiple carers - control and confusion

I think whatever is going on with your mum @Shasan (dementia or not) it should be brought to the attention of a professional as it sounds like it could become dangerous - based on what you say something does not sound right about the way your mum is behaving.

Like you, when this was happening in my family (and my family member was yet to be diagnosed) there was another family member making the situation more complicated and harder than it needed to be. I took the mindset that my ill family member was my priority and my unhelpful family member was white noise. I didn't have time or interest at that stage to engage in anything apart from taking care of my ill family member. I'm am sharing this with you not to give you advice per se but more to let you know I went through something similar and how I moved forward. 

I also think (like you) informing the doctor it is the right thing to do.

Take care,

FloatingFeather

Re: Multiple carers - control and confusion

@Shasan 

 I feel your frustration to be a long distant carer while family is not on the same page. It sounds like there are a lot going on but you're doing your best to make sure your mom is alright. I'm seeing that you have a good understanding of symptom overlaps. It's very good that you pay attention to details. There is increased risk for dementia in people who have schizophrenia. It's not a bad move to be alarmed and to inform her psychiatrist about the symptoms that raise concern. There is no harm in "see something say something" I don't know what it says in her care plan about her consent around involving family member. What I'm trying to say is if you're included in that, you could use it to tell your dad or brother to stand your ground. What I'm hearing is there is a challenge around getting your dad and brother on board. And finding the right rope to pull might be helpful. And if you like, you can try to communicate with your dad around the statistic of Dementia that it is the second leading cause of death in Australia (source) to state your concern on why there has to be complication in this. At any time if you feel exhausted, it's okay to take a break and look after yourself so when the new day comes you're fully charged 🙂 You're doing great.

Re: Multiple carers - control and confusion

Hi @FloatingFeather @BasicBird 

 

I can't thank you enough for you validation - Being the only logical, rational person (unfortunately) is not a great thing some times! 

 

But I'm glad I stood my ground and informed the psychiatrist directly. He said the medication for both schizo and dementia is the same and she's receiving those (after my brother and father took her out of western meds to try alternative treatment against my strong recommendation 😡) .

 

This is unfortunately outside Australia, in another country. I wish the systems there were like here where the doctor has a right to take action if they deem that person is being unsafe. In this other country, they mainly deal with medication and education and sometimes counselling - they leave the final action to be taken by the family. I'm sorry to say, neither my brother or father have the courage and clarity to take tough decisions - they're too worried about everything else than my mom's health. 

 

I will read about my rights as a daughter even though I'm away in a different country and won't be afraid to use it if required. They're both waiting to wash their hands off this matter - it's really sad. 

 

Anyway... The doctor is now aware and I'll continue talking to him. The main gap in information right now is my mom's symptoms - I can only find out if she's directly being delusional with me or when my dad shares about it - and he doesn't always maintain the correct timeline. 

 

I've decided to tell him I'm only interested in discussing this matter with him if he'll stick to latest symptoms or maintains a diary of symptoms - I can't emotionally support him if he just wants to complain and whinge. I'm not available to hear anything else other than my mom's progress until she's better. I'll see how he responds. I'm so triggered just thinking about him right now but well... 

 

 @FloatingFeather thank you for your white noise analogy - it's exactly that mindset that I need right now. 

 

 

Re: Multiple carers - control and confusion

Hi @Shasan,

Thank you for letting us know how you are getting on. It's great to read that you are able to speak directly to your mum's psychiatrist instead of just having to rely on what some of your family members tell you. Do you think your dad and brother are trying to avoid what is going on with your mum because it's too hard for them to deal with (like the analogy of putting your head in the sand)?

I can see how much you love your mum - you are doing an amazing job trying to support her despite the many hurdles you have. It sounds like you have put some good boundaries in place with your dad - hopefully he will respond well and be more forthcoming about how your mum is going. 

Please remember to take care and time out for yourself during this difficult time too. I can tell by your posts that you are putting a lot of energy and thought into this situation which is great but don't forget to allow yourself and your mind some time out to reset and rest. As the saying goes "you can't draw from an empty well".

Take care and all the best to you and your mum.

FloatingFeather  

Re: Multiple carers - control and confusion

hi @Shasan and welcome

I am a carer for someone who has alzheimers and it can be quite daunting to go through. some family members find it hard to understand and accept this as well especially if theres already a current diagnosis.

One thing i would suggest is to contact my aged care. my aged care can do free assessments on your mum and her mental health. it requires having someone there that knows her well or someone who has the same concerns as well to be able to tell the assessor the truth. most people with any form of dementia will fight the diagnosis until the cows come home because it can be scary. most elderly know the disease as one that requires going to a nursing home however thats not always the case.
im a young carer for my grandfather but he was diagnoses about 3 years ago (been his carer for 7) and he is still able to be home as long as there are safe guards in place. he has access to home supports, personal care, social visits/outings, and can access some health services like physio for free or low cost on a regular basis.
it may be worth looking into as the process can sometimes be long or wait lists are extensive so takes a little bit to be able to access all the supports shes eligible for.

please keep reaching out for supports and your welcome to tag me anytime. i will do my best to share any advice or guidance i may have and to support you as well
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