Stressed out carer for my mum who has various issues

Specific disabilities and conditions
1

Hi all, I don’t know if this is the right place for this thread but I’m new so please forgive me if it’s in the wrong area and move to wherever it is best suited.

Since November 2016 I have been out of work and caring for my mum. I was in work and received a phone call that she had been admitted to hospital with an extremely high heart rate and breathing difficulties. That was the last time I worked. She was in hospital for a few days and developed pneumonia also which wiped her out. She had a lot of health issues prior to that and it took it out of her, hence me becoming her carer.

Fast forward to January last year and she was diagnosed with breast cancer. She had the mastectomy in February (under local anaesthetic as she couldn’t be knocked out for it, so she may have a little PTSD from being awake during the op) and has been on tablets for it since. She had radiotherapy, which caused her a lot of issues (mouth problems, throat problems, oral thrush etc) and led to her losing so much weight that she was, again, hospitalised. Since release, she has only been able to drink tea, Ensure meal replacements and soup. She was given the all clear for her cancer about 7 months ago, which I thought would be the start of moving on.

It wasn’t. Since the all clear, she spent all her time while she was awake feeling her other breast, checking her armpits, neck, throat, chest, arms, anywhere that she could possibly find things. She is VERY thin as it is, and her specialist has explained to her that she will feel lumps and bumps that other, heavier people wouldn’t feel, and has asked her to only check once a month. She continues to check every hour of every day and is forever asking me to google things for her, to check things, to reassure her, and it’s taken over both of our lives.

2 months ago I finally got her into therapy to start dealing with some of her issues and had an appointment with a psychiatrist to review her anxiety medicine, which she has been on for too long and is no longer working. Sadly, after two sessions, Corona virus arrived and her therapy and psychiatrist appointment were both cancelled. She has also found a lot of things (lumps and bumps) that are concerning her, but due to the virus, we can’t go to her specialist, so she has basically become a ball of fear.

The Corona virus has made it even worse. She will not allow me to go shopping, and even throws a fit if I order shopping because “the driver might have it” and “the boxes are contaminated” and “what if the virus has gone through the tin and into my soup”. I have been losing weight, solidly, for a year because the stress of caring (coupled with very bad IBS for me, which I’ve had for 20 years) means I can hardly keep anything down. I can only drink water and have run out several times because she won’t relent on letting me shop, because of the virus. She has me wearing gloves to make her cup of tea, gloves to put her phone on charge, I’m washing my hands like a hundred times a day, we are keeping ourselves in separate rooms and when shopping arrives, I wipe it down with antibacterial wipes, wear gloves and shower once it’s away. She STILL thinks that the virus is in the house.

I am at the end of my tether with it all, because my whole day, from the second my eyes open to the second they close (which isn’t much, 2-3 hours a night) is taken up with worries, questions, symptoms, virus panic etc.

I know that she clearly has some mental issues that need working through with a professional and I am being as caring and sympathetic as I can, but after three and a half years, I am worn down and empty.

Any advice on what I can do to try and make both of our lives even a little better?

2

Hello Anthony and welcome to Carers UK forum

I’m sorry your Mum is having such a hard time with her health and that caring for her is tough on you too. Being a carer for someone with complex needs can be very draining and it’s important that you keep yourself in the best health you can while you are caring for her.

Have you looked at our advice and information web page on well-being tips during his time? - COVID-19 guidance | Carers UK

Also, If you are able to join, we are hosting a well-being webinar on Thursday, details are in this forum here - https://www.carersuk.org/forum/44/wellbeing-webinar-for-carers-thurs-9-april-at-12-30pm-40245

MIND also have some resources that may be useful to share with your Mum - https://www.mind.org.uk/information-support/coronavirus/coronavirus-and-your-wellbeing/#collapse3db5e

You are in the right place to talk about your situation and get support, I’m sure other members will be along to offer further suggestions.

Best wishes

Jane

3

You cannot live like this.

Is her GP doing anything to help?
She clearly needs some sort of short term medication, at very least, to manage her anxiety. Ring the surgery and insist on speaking to someone.

How old are you, and mum?
Do you ever say “No” to mum?
Have you thought about recording her behaviour, especially the way she speaks to you, on your phone?

4

Gosh Anthony, how stressful this all sounds.

My friend does CBT for the NHS and she is still treating her clients - by telephone.

Might be worth contacting the psychiatrist/GP for a telephone appointment. It does sound like she needs her meds sorting asap.

If your Mum has lumps and bumps then she needs to consult the GP about this.

You say you are I separate rooms? Therefore how about playing along with your Mum and telling her you want to keep her safe and she needs to self-isolate in her room. You can even glove and gown up etc when supporting her. If you left her meals outside on a table, could she collect them? You could communicate from outside the door or by phone. She might feel safer this way and you could lessen all the OTT measures she is expecting you to do and just wash your hands at common sense time e.g. after using the toilet, after going out (I know you haven’t been able to manage that in awhile), before food prep and before meals.

Too much time focussing on coronavirus is enough to make anyone anxious. What do you both usually do to while away the hours?

S and I walk daily - just local streets - but it is really lovely to get out in the fresh air - does your Mum nod off at all or watch anything specific on TV etc - that could be your chance to sneak out or matter of factly tell her you are going for walk each day.

Melly1

5

Melly, that’s a really “Cunning Plan”!!

6

Are you connected to any local carers groups.

https://www.carersuk.org/help-and-advice/get-support/local-support

You need to have people phone you on a daily basis and or Skype or equivalent etc

Essentially, with any speed - It’s going to be more difficult to help mum. However, you can get fairly quickly get help here on the forum. And from some local connections. These connections will can/do don’t have to speak about the home situation. Unless you want too and well away from Mum’s hearing. If you feel more supported and at ease hopefully this will help you with Mum

You are not alone!!

There are many regular people on this forum. Who watch the forum throughout the day & evening .

Melly1 suggestions are great ideas.

Did your Mum listen to the Queens speech - which was so uplifting.

7

Hi. The GP is saying that her current medicine is difficult to wean off and onto another one, so he doesn’t really feel that now is the best time. She told him that she had basically stopped taking it now anyway because it’s stopped working and he said now still isn’t the best time to try a new one.

I am 34 and mum is 65. I do say no to her over things but most of the time that just makes it worse. I have recorded her behaviour and she apologies for it, but then continues it twenty minutes later.

8

I do all of this with her food and drinks, so I am very rarely within 6 feet of her, if that. It doesn’t make her feel any safer and she’s just finding more and more things to worry about every day. She practically has a panic attack if the post comes because “it’s infected” and literally spends her entire day worrying about things.

I try to do some reading/writing/watch some Tv or talk online to friends but I can’t settle into anything because it’s never more than ten minutes before she’s shouting me for something or I have a piece of cooking or housework to do, so I’m finding it almost impossible to unwind. Mum goes on Facebook for some groups she’s in and to briefly chat with friends, and then watches the same 3 programmes (5 hours of one show on DVD, then two hours of another and then two hours of the third) always in the same order and at the same times every day and refuses to watch anything new or try new hobbies.

9

I checked back to see how old mum is, 65, 3 years younger than me!!

Her behaviour is bizarre, and really needs to be investigated. I don’t think the possibility of early onset dementia should be discounted. You shouldn’t have your life totally ruled by her in this way, no mother should treat her son this way.

10

Hey again all, just bumping this back up with an update.

Since this post, mum has gotten immeasurably worse and has developed symptoms of OCD and Paranoia. She stands by her window constantly and is convinced that the neighbours have gone (they haven’t), that the street is deserted (it isn’t) and that any vans and trucks that park near the house are here to cut off our gas/water etc. She has also become convinced that we have no money, don’t own our house, that our entire lives are untrue (she thinks our passports/NI numbers are wrong, which they aren’t) and refuses to watch TV because we “get charged every time we watch anything, or use YouTube” (we pay virgin for a monthly package so all of this is included, but she won’t have that) and thinks that bills aren’t getting paid (I am on top of the banking and bill payments but she refuses to believe that.)

Also, she has become increasingly clingy and reliant on me, literally shouting me every second I’m not in the room, following me around the house, waiting outside the bathroom etc and I now have to sleep on her bed until she falls asleep, otherwise she keeps the entire house up all night.

Her doctor has put her on Mirtazapine and says that some of this heightened anxiety and behaviour may be due to her body getting used to the new medicine (she’s only on day 10), so I’m hoping there may be an improvement soon? Has anyone had any experience of that particular drug?

I’m at the end of my tether with it all though and I don’t see how I can continue. We contacted a local mental health crisis team and they were so little help it’s untrue, with one woman who visited the house replying to my mum saying “well what if I said I was thinking of hurting myself?” With “well if we put everyone who said that in hospital, we’d have no beds would we?”. Then she told me we were basically on our own and for mum to take the tablets and then she discharged us from the service, so I am at a loss. Any hints or ideas of what this could be? We are working on anxiety and OCD but could this be anything else? Thanks in advance.

11

Have you asked Social Services for an URGENT Carers Assessment?

Have you spoken to YOUR doctor about the toll this is taking on you?
I really don’t think you can or even should be putting up with this, you are a young man who should be enjoying life, working, out with friends, but at the moment you can’t move an inch without mum. Is she now claiming Personal Independence Payment? Are you getting Carers Allowance?
Do you have Power of Attorney?

12

The mental health services in my area have increased community support, to keep people safe and well and out of hospital.
They should have a community mental health team to help and advise as well as the crisis team.

And it is only the most very ill that get a hospital bed.
One of my carees took an overdose, went A&E, and was just discharged with a load of leaflets, you are supposed to self care, as they call it, find your own solutions, counselling and support.

Not at all helpful.

You said in your first post, your mum was having therapy and was to be seeing a pyschiatrist, your mum still needs this. mental illness just does not go away, your mum needs a proper assessment and the right help treatment and support and you too as an unpaid carer.

I would suggest contact Pals, every hospital/mental health trust has to have a PALS, patient liason.

Contact the GP again ask for an Urgent Referral to Community Mental Health service, say you as a carer are strugglying with the 24 hour care that you are doing.

I found Rethink very helpful, for advice, help and information, is there one in your area, you can email or telephone for advice.