Lone carer.

I was on this site 2 years ago, but got some patronising and flippant advice. Decided to give it one more try. I am a carer for my mum who is 90, blind and has severe short term memory loss. Her health has declined especially in the past 6 months. She has lost all her appetite and is almost as hard to get her to drink. Currently I am giving her ensure supplements and Complan, or sometimes soup! She is losing weight and seemingly the will to live. We never get much support from anyone. I rather thought during lockdown other people would offer some help, but no, what a joke that is! Her mobility is terrible, she can walk about 10m, and can never gout out walking anywhere. Often she is uncooperative and makes even use of walking aids, commodes or wheelchairs a big problem. I am expected to be some miracle worker here-the only miracle is she has only fallen 3 times in 4 years!!

My mum is in a warden controlled flat and I live with her 24/7. This is a nightmare scenario… The warden has constantly argued with us because mum has been confused and shouting loudly as she forgets where she is, and if I am not by her side all day she panics and gets frightened. Every day she asks where she is and what to do next, all day long. She is very deaf now too which makes it worse. We have truly horrendous neighbours too! One old man is constantly complaining about noise. Bear in mind this is noise from a VULNERABLE ADULT! It has become a hopeless situation where I am also accused of neglecting her or putting her at risk. I have spent most of the year shouting at mum to try and understand things and I swear a lot! This helps!! lol! I am appalled though at the intolerance and spite of those that live here!! Luckily my mum’s mental health is so bad that she is blissfully unaware of problems we have! All the residents complain about mum and are saying I am a poor son to her! Not once in 12 weeks of lockdown has ONE person enquired about us or our health. The pandemic has really shown that people are so selfish and unsympathetic. I have also been fighting to get her medication-the chemist has forgotten to send repeat prescriptions to the doctors surgery three times. I swear someone up there truly wants us gone! This stress I do NOT need! Would you believe our warden complained about birds here and a hedgehog I was feeding occasionally?? I think that says all you need to know about the small minded people and lack of respect for any life!

Seriously though, I hate this life now. Mum is restless every night, and she rarely sleeps more than 3 hours. Last week I had about 8 hours total sleep myself! Her mobility is terrible now and makes things worse as she hasn’t a clue where she should go-never knows where the toilet is. She can be up 2-3 times a night! I have not had proper sleep in almost a year now-have given up.

Social services have supplied 30 minutes care every morning to help mum get up and wash. However this is around 7.30 am and half the time mum is too tired to get up! It means any sleep I could have had is gone now! I must say that Social services have done their best-they do try hard, but the pandemic has made things worse for all. I have had to try and manage mum’s money for her but not having power of attorney makes it virtually impossible. Only once in 10 weeks have I been able to go to the bank to pay money I-and only because a carer sat with mum for 1 hour. I should add that I have NO free time and that 1 hour was the only free time I have had in 2 years! It’s pointless asking for help in the day because every day consists of me making sure I am with her all the time to ensure she is safe. And anyway, it would only be for two hours a week!!!

This is a battle impossible to win. I will now think of my life for once. I have NO family, neither has mum. Nobody to help. We have been abandoned and left to rot. Always people say take care-how can I when I can’t see a GP, doctor, dentist or Optician any more. Guess I will have to live with a blood pressure of 215/126 until it kills me then? (and that is at rest!!)

So the only solution is to issue Social Services with notice that I will give up caring in a month and make myself homeless and live in the car! That would be far better than continuing to struggle as an unwanted and hated carer here. Nobody cares about mum or me here but if I go she can have professional help. I am sure she will soo forget me anyway which is a truly depressing and distressing thought. Either way, I have learned that there are very few people left in life who care about others and are truly awful. I just want some dignity for mum and to sleep for ONE night!

You MUST get some rest, immediately, with your blood pressure so high. I can’t believe your GP hasn’t done anything to help, that is sky high. Do you and mum share the same GP
Mum needs to go into residential care, at least for the short term until something else is sorted out. Dementia is hateful, you have done your very, very best, at the expense of your own health. Time to hand over to the professionals.

If your blood pressure of 215/126 was measured by a GP who did nothing about it he should be reported.
to the medical council. It needs to be brought down immediately…

My GP was very concerned when mine was 165/95 or thereabouts!! Medication changed.
Interestingly during lockdown while my son couldn’t come to see me, and Social Services more or less closed down, mine absolutely plummeted to about 130/60!!
This has been a real wake up call for me. I need to try to limit my contact with SSD for the sake of my own health.

Hi Mark, your trying to cope with the near impossible. I would book a double length appointment with your GP just for you for starters and it will probably be by phone. Then a double appointment to talk about your mothers needs. Then I would ring social services. Things are slowly starting up. My husband is waiting for a memory test and they are now going to do it by video/phone.

You need a break and the right to have some sleep.

Wondering if you are in a two bed flat. Also wondering if a carers could be enlisted for some of the nights to let you sleep. I know that might take a while before things can be set up.

There is money and you’re entitled to some of it to make your life and that of your mother easier. My husband was awarded direct payments and I have a carers package, neither of which we can use at the moment.

Also wondering if a dementia organisation could advise.

I too have been on this forum before and just didn’t find very much activity. Didn’t get any bad comments but my husband is autistic and I felt very few people had any idea of problems I face on a daily basis.

Things are slowly getting better with COVID and their will be a vaccine and anti viral meds.

It’s a tough, tough time and you have it really tough.

I know your angry and I don’t blame you but don’t let that get in the way of getting help, even if it can’t be right now, because you’ve been let down in the past.

These are crazy, dangerous times for so many but it will improve.

Linda, I’m sorry if no one responded to your posts, your situation is rather unusual, and so no one could speak from their own experience.

Thank you bowlingbun. I realise Im in an unusual situation and I was posting on a specialist forum until it closed. I guess however we all have things in common, that at times we feel overwhelmed, exhausted, not knowing who to turn to, angry, regretful, resentful, sorry, grateful and so on. Sometimes we just want someone to hear us.

I think this forum is very good at helping to direct people to resources and agencies that can help in particular situations.


Your situation sounds impossible. I agree with you it cannot go on. I am concerned that you are talking about having to sleep in your car though. Can you ring carers uk phone line on Monday to discuss options

I do agree it is time to give notice to social services though that you cannot continue.

Your mum clearly needs more care,a residential home perhaps.

Or if it is a two bed flat then social services could put in night care. Although I appreciate that this does not sound ideal as you may find it impossible to relax and sleep.

Do consider also phoning your GP for a telephone appointnent. A double one preferably.

Your quality of life and health is being negatively affected it can’t go on like this.

You matter too.