Caring vs My Life

New to Carers Connect
1

Where do folk draw the line? Mum isn’t looking after herself & fiercely Independant. Recently has a health scare meaning me & my partner pulled out literally every stop to help which any daughter would do in the same situation… however…

Mum always pushes back “I’m fine” “stop worrying I’m more than capable” regularly making me feel like I’m over the top and should “chill out” when I see she is becoming more and more of a risk to herself (lives alone, hoarder, dysphasia, alcoholic etc).

So after not sleeping for 33hrs straight for an a&e trip as she’d suddenly lost functionality of her limbs through some mystery illness… my partner who himself is off with a bad back, having to physically lift mum in & out of his sports car bucket seats to n from emergency appointments (I don’t drive) while I’m at work in a new job.

Had to take the day off from said new job which puts it (in my mind anyway) at risk… fast forward to now, my partner has had to cancel his daughters first stop over this weekend (with his granddaughter) which we have both excitedly been looking forward to as he’s physically & mentally drained - as was I, so I’m now racked with guilt!

It turns out that mums hospital trip was entirely self inflicted - I’m always ‘nagging’ her to do things she’s ‘quite capable of’ such as taking meds and physically eating, her a&e trip was caused by her not looking after herself!! She failed to take vital prescribed drugs for a newly diagnosed condition.

When we wheeled mum into a&e every bump in the wheelchair caused pain and discomfort, they dosed her up on oramorph THEN had a physio assess her ability to mobilise herself alone for safe discharge… of course… she was more able!!! The overwhelmed hospital with no beds gave her the ‘all clear’ to go home ignoring my pleas that she’s unable to eat (dysplasia) or take her medication and REFUSES carers or cleaners (did i mention she’s a hoarder & her home is a death trap?) So mum is home with meds I know she will forget to take with food she doesn’t eat and meanwhile my in life is going down the pan?

I love my mum but at what point when someone touches a hot stove consistently do you think, do you know what, crack on then… if you think you can care for yourself, off you pop then, I’ll take care of me and my own & you do you.

I’m torn between a duty of care and feeling like I’m being taken advantage of… but also mum not acknowledging the concern? She regularly minimises my concerns to others ‘she’s a fretter’ or ‘stop stressing out you’ll make yourself ill’

Never has ‘divorcing’ your own mum & walking away felt like such a viable self care choice?

I feel like the a**shole and overwhelmed.

She refuses carers or cleaners and literally doesn’t listen to me… whenever the strained healthcare professionals visit she knows exactly what to say to get them out their hair and they’re under so much strain they lap it up & sign her off.

As she’s an alcoholic she’s a very competent liar BUT she’s my mum, if she were just a distant friend and it weren’t cruel to walk away, I totally would but I feel like she’s ruining my life right now.

Help?

2

Hi Sarah

I am the partner of someone with relatively early dementia so don,t have any experience to help you. I just wanted to respond as no-one else has yet though I am sure they will so keep looking.

I can only suggest what I would try in your situation.

I think I would sit down in the morning when you will hopefully feel calmer and write down a list of your mum,s behaviours that trouble you and what you think might happen. I would then write to SocialServices if you can find the correct person to send it to - if you can’t send it to a general social services address and copy it to your mum,s GP. Tell them about your worries about your mum,s safety, your partner’s safety and any other health impacts. Say that you have tried to help her but it is not working and you can no longer do anything to help her and feel she is at risk and that she needs a visit urgently.

You could continue to visit her in the meantime -hopefully with a little of the pressure lifted - having passed on the responsibility. Visit her to have a cup of tea as a daughter not a carer - try to set aside her problems - she thinks she is managing so let her manage unless she is in imminent danger. If this is too much for you then you perhaps need to withdraw for a while - only you know if this is possible but in answer to your main question yes you do have a right to a life. You rightly feel a duty and also just want to help your mum but you have tried and tried so a change needs to happen.

I feel that a letter to Social Services has to be answered and it is less easy to fob you off - of course it may not work.

If you have not tried one of the Carer’s support lines I would try that first - they will have seen many similar situations and hopefully will give you good advice.

Most of all I want to say please look after yourself as well as others both because you have an equal right to be cared for and it will help you to care for those who rely on you. I wish you, your family and your mum all the best in getting to a better place.

3

Good Morning Sarah

My heart goes out to you. I am the wife of a much older man who sounds similar to your mother - medically non compliant and he at his worst, drank a litre of vodka a day and he is also a hoarder too threatening me with the police if I organise a van to remove the old videos/computers/printers in the front room which frankly makes it unusable.

Sue has given good advice and I am sure others will be along to give their opinions . I would personally write to your mothers gp maybe even cc a solicitor, pointing out that they have a ‘duty of care’ to your mother and in your opinion, the hospital discharge was dangerous, It might be worth sending a copy of the letter to the Ward Manager and Chief Executive?

You DO NOT have to put your physical and mental health at risk to try and care for someone medically non compliant especially if they have ‘mental capacity’ and frankly today, just about everyone seems to have the latter!!! I feel your mother will end up in hospital soon and then you can press the dangerous discharge and say it is up to them to arrange carers - yes she will refuse them but if she has ‘mental capacity’ then sadly she is allowed to do this and there is little you can do until it becomes an emergency, and the medical profession agree that she has lost capacity. I had to do this with my late father, as no way could I care for 2 vicious old men who hated each other .

I choose to do my best for my husband because I want to keep my home and my cats safe but if I did not live with him, I would disengage much more, and I have disengaged to a degree, but I totally get how hard it is as we are 'programmed; to care for our relations however difficult and in many cases, impossible this is, if they are non compliant.

4

The problem with alcoholism is a general inability to face facts. It starts with not acknowledging the alcoholism and it spreads to every aspect of their lives. From what you’re saying, your Mum has been alcoholic for some time and it is impacting on her self-care to an extreme now, as well as possibly her memory.

Has she lost weight? There are a lot of calories in alcohol (which is converted from sugar, basically), so if she’s drinking large quantities her weight may not have shifted much. So she’s missing out on nutrition, which will damage her health, but potentially maintaining her weight. As weight loss is generally taken as a sign of not eating, health professionals will assume she is eating unless they are aware of her alcoholism: and there will be a tendency for NHS staff to not want to deal with an alcoholic patient, as trying to support someone who does not accept help is draining and generally doomed to fail.

There’s been some good advice so far and I hesitate to add to it, but perhaps things are at the point where she can be judged to be a danger to herself and potentially to others? While her GP may not be able to discuss your mother with you, they can listen to your concerns, and the idea of a letter detailing what you know of your mother’s health and your concerns for her self-harming (because that is what it is) is a good one. It is worth highlighting that she appears to be making decisions based on addiction-based impulses rather than going through the decision process outlined in the Mental Capacity Act.

The four steps of making a decision are:

  1. Taking in all the facts (and understanding them)
  2. Remembering them long enough to make a decision
  3. Weighing up the facts and any other factors before making the decision
  4. Making and communicating the decision

Most people with a dependency on alcohol and other substances will often fail at point 3. They’ll just go straight to the decision. If you believe that’s happening here then put that in your letter - otherwise the assumption of capacity will prevent the authorities from acting. If they accept that she lacks capacity they can get involved.

5

Sarah - there is a simple solution to this. All you need to do is to take control.
Work out a timetable for when you ARE available to help your mum eg Tuesday afternoon, Thursday evening , Saturday morning or whatever and stick to it. Then if your mum phones you asking for help on one of the other days you just say 'Sorry mum can’t help today because I’m working / got the grandchildren round/ going out with my partner’or whatever. But then you can add ‘but I am coming round tomorrow after work as I said I would.’
Sadly things will get worse as your mum ages so she will have to have carers in to help her. Otherwise it’s just not fair on you and your partner.

6

I would go further. Do what I did, put tour answer phone on and leave it on 24/7. Then you can listen to the messages and reply, if necessary. I was very busy, newly disabled, newly widowed, left to run our business which involved writing a magazine. Mum didn’t appreciate that I needed to work to live, I’d be in the middle of writing an article about lorry gearboxes, comparative studies of engines etc and mum would ring and completely destroy my chain of thought. I had a Sierra for 8 years without learning how to lift the bonnet! My husband was the lorry enthusiast, not me.
Do not fall into the trap of saying to mum I can’t because… It’s your life, you do not need to tell mum. My counsellor taught me that.