Guilt

New to Carers Connect
1

Hi all, I’ve been wrestling with the decision to put my mum in assisted living (probably a care home) for some time now. I feel I’ve finally come to the end of what I’m able to do for her, care wise, and that it’s time she went into a care home but the guilt is consuming me.

Our back story: I was living in England for 10 years where I had a home, relationship, a dog and was studying for a PhD. Just as I completed my PhD my mum, who lives in a small Scottish town, became ill with lung cancer. She has no other family and rather than let her go into a hospice, I gave up everything to go and look after her. I literally arrived with one suitcase and my dog.

That was two years ago and those years have been the hardest of my life. I am on 24/7 call for her, I do her shopping, look after her dog, all of her domestic chores, her hospital appointments and liaise between what seems a never ending amount of people - doctors, carers (she gets three visits per day), pharmacists, district nurses ect. It’s exhausting. From being a scientist, I now work as a part-time cleaner and am in therapy for anxiety and depression.

My mum also has symptoms of dementia, she calls me constantly during the night and if I don’t answer she’ll wander around in the dark outside, knocking on her neighbours doors asking what time it is. She also recently ran up a £300 phone bill to the speaking clock and last week she had a house fire at 2am which required the fire department and ambulance to be called. However, she apparently has capacity, according to her assessments.

I’ve spent the last few days in turmoil. Not only can I not keep her safe but my life is in tatters and I’m so unhappy. My mum goes hysterical when I mention going into assisted living and the guilt is overwhelming. I’m her only family (she was an alcoholic in her younger days and most of the family don’t talk to her, or me, by association). I also lost my dog to cancer three months ago which was devastating. As someone who doesn’t have the time or money to socialise, he was literally my only friend.

It’s so sad to see my once vibrant and effervescent mum like this and to have her blame me is almost unbearable.

Sorry for the essay, I’m not really sure what I’m asking, I just wanted to get it off my chest x

2

You can’t do it all on your own, or if you do it’s hard and absolutely relentless as you’ve already discovered.

Has your Mum had a “Needs Assessment” and yourself a “Carers Assessment”?

Wandering around in the night asking neighbours the time is not normal, (my mother used to go around at night - in her night clothes - begging for food - with a well stocked fridge), so whoever decided that she has capacity also needs a re-think, presumably the neighbours will back this up. Can you lock the front/back doors to stop her from getting out?

There is no need to feel guilty, you have done more than could be reasonably expected already, it’s a stage that many old people reach.

3

It’s a real shame that things didn’t happen differently, 2 years ago. I’m not familiar with the Scottish system, but when she was diagnosed with lung cancer, she should have been offered help and benefits.

It’s not your decision to put mum in a home or not, it IS your decision whether or not you can continue to care for her.
Frankly, it’s a criminal waste of your studies and life to do what you are at the moment. No wonder you are feeling terrible yourself!

The vital question now relates to her lung cancer. How much longer does she have, or is she still having treatment.
You can’t make any plans until you know the answer to that question.

Given your qualifications, you must have all the skills to work out in priority order what the current problems are, and to develop an Escape Plan.

I’d also suggest you ask your GP for details of a good local counsellor. I used to be scathing at the very idea, but it was the best thing I ever did when juggling with a disabled mum, a disabled son, when I was newly widowed and newly disabled myself. Counselling helped me set my priorities and dump any guilt. To be proud of what I did for everyone, not guilty at what I didn’t.

Does mum own her house?
Have over £23,000 in savings (the usual English limit for getting help from Social Services)
Is she entitled to any disability benefits?
Do you have Power of Attorney?