What to say when they are never coming home

Posted on 11th July 202219th July 2022

Sometimes it’s incredibly difficult to know what to do for the best. Dr Lesley Trenner offers advice to a reader who’s stuck between kindness and honesty when her mum asks when she can go home from nursing care.

Dear Lesley,

Gosh this is hard to start.

Long story short. Mum caught Covid, went to hospital, ended up with grade 4 bed sores, and has been in nursing home for a year.

Since being in the nursing home her mental health has seriously declined as she hates being in there and cries and screams all the time. She’s completely immobile and now doubly incontinent, but she is still asking when she is coming home. On visits when she is lucid, which is still a lot of the time, she asks when is she coming home, and at the last NHS funded nursing care (FNC) review the answer looks like that is probably never, due to the need for 24 hour care and funding (or lack of from us).

So my question is how do we tell her that she may not come home when she doesn’t understand how much care she needs?

I am sure it will finish her off. She’s stuck in a body that doesn’t work and a mind that is playing tricks on her. It’s so hard to spend the one hour a week we get wiping her tears and consoling her.

Any advice would be helpful.

Dear D

What a sad situation. So hard for your mum and also for you and your family. Unfortunately you won’t be the only family who has had to face this dilemma, particularly since the pandemic

I don’t think there are any easy or ‘right’ answers. It’s more about what will be the ‘least worse’ option based on the kind of person your mum was, or is now, your relationship with her and your own values and beliefs. So can I suggest three possible approaches for you to think about?

I know you say it will ‘finish her off’ but are you sure you couldn’t tell her the truth? Maybe this kind of ‘tough love’ would be appropriate if she is, or used to be, someone who always wanted to hear the unvarnished truth and would appreciate you levelling with her. Tell her that the nursing home have specialist staff and the best facilities and that she is safer with people around than being alone in her own home. Play up any good points about the home – a favourite member of staff, a lovely garden. It might just be possible for her find a way to accept it, come to terms with things and perhaps find a way to make the best of this last phase of her life, in the nursing home
If you decide that honesty just can’t work, then try putting aside any beliefs about the need to tell the ‘whole truth and nothing but the truth’. Tell your Mum that she will be going home ‘soon’ or ‘as soon as she is better’ or ‘as soon as her legs are better’. Allow yourself to tell a few well-intentioned ‘white lies’ about what needs to improve and then you will talk about her going back home. If you think that having this hope will improve her mood and her mental health then it is worth considering what she would most like to hear. The downside of this is that she may start to realise the real situation bit by bit, depending on how she is during her lucid times and get frustrated at her lack of progress.
Find some form of words that isn’t too brutally honest but also doesn’t feel like a straightforward lie. Keep in mind that sometimes the question: ‘When can I go home?’ translates to: ‘I hate my life now and want to go back to a time and place that felt happy and safe’. Your mum may be fantasising about when she was younger and healthier and can’t accept that that time is gone. If she’s been in the nursing home for a year, her real ‘home’ may be forgotten, or idealised as a place of easy independence. So don’t argue with her or try to use logic or reason. Agree with her that it would be great if she could go home. You would love that for her too. Hopefully that day will come. Then change the subject. Distract her. Reassure her as much as you can. You will continue to visit. You will hold her hand when she cries, make her as comfortable as you can, play her the music she likes, read her stories. Then cry with her, empathise when she screams then try again to distract her.

Whatever approach you take, keep in mind that if her mental health is deteriorating and she is in pain then she may not remember the conversations you have. As you’ve noticed sometimes she is lucid and sometimes she isn’t. You may need to repeat things. You can try different words and different strategies and see what happens. Also, do check in with the staff. You may find she is better when you aren’t there and saves her crying for you so it’s not quite as bad as it seems.

Finally, acknowledge to yourself that you are having a really tough time with this. Unfortunately this is not a situation of your making or a problem you can fix. It’s cruel and it’s unfair. It’s not what anyone wanted. Remain as calm and patient as you can. Keep wiping away your mum’s tears and consoling her. This time is painful for everyone but eventually it will pass and hopefully you will be able to look back on it as a sad time where you did the very best you could for your mum.

We all sympathise and wish you the best of luck

Lesley

Dr Lesley Trenner is an eldercare coach with extensive qualifications and experience in life coaching. Lesley provides one-to-one help for people who are struggling to cope with the ’emotional rollercoaster’ of eldercare or balance caring responsibilities with a busy career. You can talk to Lesley via Zoom or on the phone. Email Lesley or call 07919 880 250 for a free introductory chat. You can also visit her Facebook page.

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