Difficult dealing with mum and brother

[holiss]

Hi all,

I need some extra help in supporting mum, but don't think she will cooperate. I don't know if a private carer to pop in when I can't would work better for her, as me mentioning social services, will upset her. She doesn't think she needs any help, and certainly not from SS!

I think I am underestimating what I do and maybe mum doesn't really need much more help than I am currently giving. I just worry that I might be missing things like personal care issue I think. I have volunteered to help her shower etc but she claims to do this herself.

My brother stays over with mum several nights a week, in the guise of it being to help mum but I think its more for his own benefit, it's been going on for years. Its reassuring for her and me that he is there keeping an eye. He was very dismissive when I raised concerns about mums memory and I took it upon myself to have her assessed anyway, and she was diagnosed with Alzhemiers. My brother was angry at me for doing so, and said there's nothing wrong with her, just old age! Though its early stages, I'm noticing changes and mum lacks insight. I'm having to visit most days, with most of the responsibility falling on me. My brother says we must work together, though does very little, brings nothing to the table and I find him very difficult to deal. He has strong views on things and tries to push these on me. Mum and brother have a complex relationship and she protects him. Mum needs reminding to change her clothes. Her diet is poor, but I rather her eat what she wants than eat nothing. She seems fixated on eating takeaway which she orders herself most if not every night, even if I have provided a cooked meal for her.

I told my brother about the changes, and that I am finding it difficult managing all of it myself, especially giving meds. Automated pill box didn't work for her. I need extra help, and he just brushes it off really and says in time. I have had a few heated arguments with my brother, and have taken it upon myself to speak to social services today to get an assessment, without either mum or brother knowing. I feel awful as mum is not a fan of SS and having my brother there she feels some security/reassurance on those nights. I'm not trying to get him put out, but don't want her needs neglected. I just don't know what to do at times it gets overwhelming.

I'm finding it quite stressful and need to take care of myself. I have Generalised anxiety disorder, and I find I'm battling with both my Mum who is difficult and relies and expects my help, but also having to deal with my brother. He thinks I'm over reacting and not allowing my mum to live her life as she wants to. I think he is in denial or worried he might lose his place.

Mum doesn't seem to be having much of a life. I tried to get her involved in social groups, she's not interested in anything besides sitting at home watching the CCTV most of the day. She doesn't want a befriender. She does venture out each morning to get breakfast, which she has been doing for years, which is good. Mum would be so annoyed to know Social Services were involved, though I called them today out of frustration for advice, and because my brother had really annoyed me, over me raising concerns about a rug being removed which I think is a hazard for mum. He didn't see it as a concern and just me stressing myself over nothing. He told me to live my life, and let my mum make the decisions for herself. I don't think he gets it. I can't work with him, and need to just go above him even though he is older. I'm really anxious about having contacted SS, and what they might do with regard to my brother. I'm not trying to get him removed, my mum would not want that to happen, but I think he is more of a hindrance than a help! I just want mum to get the support she needs if I am missing anything and for me to receive some support too!

I guess I'm just venting right now, but any advice would be much appreciated.

Thanks

H

 

[sheepfield]

That sounds so difficult. I'm glad that you've reached out to social services. I'm 'carer' for my autistic husband though I'm sure that he doesn't consider himself 'the cared for'. And my mother in law refused a social care assessment until she had a recent fall.
But it's the impact on you that matters too. I wonder if you have considered joining a carers group or having some counselling to help you reflect on current happenings?

 

[holiss]

Thank you for replying. I really appreciate you sharing. I have since thought I should perhaps of called the dementia helpline and I think joining a carers group is a good idea. I think I just need a bit of emotional support and guidance on how to deal with stuff that comes up as its all new and increases my anxiety.

I have recently started counselling, so I can share what I'm feeling there too which is good. I think yesterday wasn't a good day and maybe I over reacted by calling social services. Its been on my mind all night, as I don't think my mum will want or cooperate. At this stage, I don't think she really needs too much help and we can manage between us, myself and my kids, and brother being an eye and company for her on her on the evenings and mornings he is there. I don't even know what I was trying to ask SS for yesterday.

I don't have much contact with my brother really, unless I have concerns to raise about mum and I call him, though it seems to fall on deaf ears, hence me trying to seek out advice over him. I often just make decisions without consulting him because of how he reacts. If SS want to assess, I will just tell mum its the doctor coming out to check her over. She will just tell them she doesn't need no carer anyway. she always presents as clean and tidy, with reminders from us to wash and change clothes, place is clean and tidy. she still does a little cleaning.

This forum is a good place to be and I often read through the stories here and have found some very useful information.

Thanks again.

H

 

[canary]

You wont always have "good" days @holiss , so its important to make plans for the "bad" days as well (which will inevitably become more often as the disease progresses).

I actually dont think its a bad idea to introduce outside support before it is really needed. In my case I left it too long because I thought I could cope, until I suddenly reached carer breakdown

 

[Spottydog]

Hello hollis, your story resonates with me. I recently got carers in for my dad and it's working pretty well despite him not wanting them. It has taken some of the constant worry away from me now that I know he is getting his medication administered correctly. I think you are doing exactly the right thing both for yourself and your mum. If your mum can fund herself then you don't need to go through SS to get care in place. If you go down the SS route you need to be there for the assessment (otherwise they will just get her or your brothers version of events) and be prepared to give examples of where your mum needs some help. Don't clean or tidy up beforehand... You have to create a 'scene of crime situation' so they can see reality. Have you got Attendance Allowance for your mum?

 

[Cathbach]

I really feel for you, it’s such a traumatic situation. Don’t dismiss your concerns. It may be that your brother isn’t yet ready to accept the reality of your mum becoming more in need of care. It’s a very hard thing to accept when you’ve been used to looking to parents for support and reassurance. Nevertheless, the centre of this is mums safety and wellbeing, and that’s what you’ve recognised and are trying to deal with. If SS, GP, memory clinic think there’s an issue that needs to be addressed, then there is.
Some kind of family counselling for you and your brother together might help, but whatever happens look after yourself. You can’t look after anyone else if yiu are unwell yourself.
Good luck. X

 

[SeaSwallow]

Hello @holiss I think that you have made the right decision to involve social services, it does sound as if your mum will need more and more care and you cannot keep up that level of care indefinitely.
It might help you to talk over your concerns with the help desk and i have attached their details below.

Contact us

Find out how to get in touch with Alzheimer's Society by phone, email, post or online.

www.alzheimers.org.uk

You might also find it useful to speak to the Admiral Nurses who provide support and advice to carers.

What is an Admiral Nurse and how can they help?

Dementia UK is a charity that provides Admiral Nurses for families affected by dementia. Call our Dementia Helpline to find out how we can support you.

www.dementiauk.org

 

[yoy]

Hi @holiss. It sounds like you have done the right thing. I would just re-emphasise what spottydog said earlier - I think you need to be there when SS come to assess, otherwise they will take what your mum and brother say (i.e she's ok) and leave it at that. If you think raising the issues you have mentioned in front of them might cause problems on the day I would suggest emailing the information you have given in your post (and any more you can think of) to SS, outlining your concern that they are in denial and can be difficult, so please can the social worker take all this into account. And read through the posts on this forum - I have learned more on here than from any professional. Look after yourself too.

 

[Jaded'n'faded]

Your mum will get far worse than she is now and no one can say when that will happen. So your brother will soon change his tune I think. You've got the ball rolling by contacting SS but I fear they will simply contact your mum by phone and ask her if everything is OK and she needs any help. She will say no and that your brother looks after her. He will confirm this. Then SS will go away.

This is what you're up against - they won't step in unless there's a crisis or your mum says she needs help.

I'm not sure what your next step is. Maybe it would be worth writing to her doctor detailing all the changes you are seeing and expressing your concerns that she is 'an elderly adult at risk'. Make sure you mention the difficulties over taking meds.

 

[DollyM1]

As others have said, the PWD thinks they still do everything and SS will believe it. When SS came to assess my mum she said that she did cooking, cleaning, everything and my dad wouldn’t challenge what she said. The next day, when SS called me and told me what had been said, I asked them if they had asked mum to make them a cup of coffee? Of course not. If they had they might have realised that she couldn’t even find the kitchen, let alone the kettle! A new assessment was done, using the information I had previously provided and by someone who had an inkling of the issues!

 

[Reb20]

Hi, I certainly can empathise. My siblings aren't proactive, and I have had to do most of the organizing for my mum on my own- and this has driven me mad, along with my husband as it obsesses me. It's a bit like ghosting or gas lighting by a sibling. I don't understand where they're coming from. One brother in particular kept saying mum wasn't ready for carers (and he's a carer!), (well she never would be) so I organized a cleaner/ carer and mum was livid when I told her- but a couple of months later she's happily having her lunch cooked for her 2 days a week with a plan to increase visits to twice a day for meals. You might be able to start with domestic help perhaps? Mum is privately funded and I found a local care company.

 

[Jale]

Hi @holiss, I think you have done exactly the right thing by contacting SS, but I will echo what others have said.

Our first point of contact was to get mum to the doctors, I wrote to her gp listing my many concerns and mum was called in for a blood pressure check. Things did move swiftly and we were advised to get POA done as quickly as possible. I don't know if this is possible for you to do as it depends on your Mum being able to understand why it is needed. My brother lived with mum, he was the golden one, and still is, but either couldn't or wouldn't want to try and understand what was happening, how things were only going to get worst or help in any way.

When SS came out to do an assessment to hear both mum and my brother talk it was like another universe, according to mum brother did everything, according to brother he did everything when in fact mum wasn't capable and brother - well I'll leave that to your imagination. I asked to have a private word with the assessor and she immediately said she could see what the real position was, it was a huge relief.

We did eventually have carers in (when I could no longer cope on my own) we told mum it was to help her son and she accepted them sort of initially but as her dementia progressed she wouldn't have anything to do with them and was very resistant especially to anyone going into the house.

I think it is important for you to be there for the assessment, otherwise as others have said they will not get the whole picture. Sadly it sometimes feels like an uphill battle trying to get the ball rolling with social services, but if you are lucky to get a good social worker they are worth their weight in gold because they are able to see behind the façade that people with dementia can and do give. Like you, my brother is older than me and the POA's are in both our names that was the only way I could get mum to agree to signing them, but all of Mum's cares, needs etc all fall to me and brother is okay with this.

It can be difficult but hang in there, many people here have either gone through, going through similar problems and will be able to point you in the right direction.

Take care

 

[holiss]

Thank you to everyone for your replies. I've not managed to log back on in a few days. Things have settled down re my brother and I removed the curled up rug, my mum agreed to it as I explained I was concerned for her safety and it being a hazard. I'm sure my brother had a moan about it.

I missed a call from SS on Friday afternoon, tried to call back but the person dealing with it had left. I will call her back in the morning. I don't know what I am even asking for? An assessment of need. I really appreciate the responses above. I get easily flustered and now feel I may have reacted in the moment, but like a few of you said, things will only get worse. I think I needed advice re personal care etc and maybe the Dementia helpline would have been a good starting place. I will call them tomorrow. I have been reading others posts on here too, which have been really helpful, and make me feel like my issues at this point seem rather trivial.

Mum has been getting attendance allowance for other medical issue for several years now. I think she has always relied/expected me and or other family members (mainly my children) to help her with things ordering and collecting prescriptions, appointments, paperwork, shopping etc. My dad when alive, used to also do most of the shopping and all the cooking and most of the cleaning and remind her to pay bills etc.

Regarding someone private for a couple of hours, I'm wondering how that works, now I've contacted social services? Will they insist on doing an assessment regardless and make decision and discuss options? I guess attendance allowance is to pay for any extra help needed!

Thanks again everyone, this is a great place to share!

H

 

[SherwoodSue]

You can still reach out to private care agencies even if you have contacted social services.
Your mother could pay out of her attendance allowance would she agree? Do you have LPA for finance?
I think your are more attuned to you mothers needs, perhaps your brother can’t see what is wrong with living on take outs.

You are worried about your mums quality of life. The reality is that socialising can be taxing for folks with early dementia in a way that sitting in front of the telly is not.

I was helped by the idea of a question posed by a dementia nurse

“ is your mum safe?”

its a question which has helped my thinking and planning several times since.

look after yourself x

 

[holiss]

Thanks for replying Sherwood Sue. Your post is really helpful. I think mum is safe, but do worry about her quality of life and poor diet and personal care, whether she is actually doing it like she says. She needs reminding re changing clothes daily. This is sometimes missed if she leaves the house before I call. I started looking at care agencies to get an idea of what they can offer. I think this would maybe work more for mum on days/nights my brother is not around.

I'm not sure how to tackle the diet. I do buy her fruit and make home cooked meals when I can. I also buy her chilled ready meals, but even in doing that she will still eat and/or throw away these and still order her takeaway, whether my brother is there or not. It's like a habit I think. I don't think she even realises that its almost every night as maybe she forgets or feels a bit embarrassed about it. She will tell me, no I don't get it every night, maybe once a week! I will see the rubbish in the bin.

As for not wanting to socialise, she's always been a bit private and prefers 1-2-1 rather than groups. She doesn't seem interested in going to visit or have friends over which, I get its a lot for her to cope with now, and I think she probably notices some change in herself maybe. She was never one to have people over, and would always prefer to go to her friend's homes.

Re Attendance Allowance, I don't think she would want to pay as she doesn't think she needs it, and she has us. She doesn't really like to spend the money on things that can help her. I end up spending out of my own money. I do have LPA for Finance, have only just registered with the bank and it is still being processed.

Thanks again.

H