In the evenings S likes to have the TV on and do one of his interests. He likes company whilst he does this. If I have been at work, then I’m usually tired and after I have done my school prep am happy to relax in front of the TV. In the hols, I’m more restless.

What do you do in the evenings which is compatible with also giving attention to your caree?


When Mum was alive I used to sit and crochet whilst she watched TV ! If I left the room for anything she would usually follow me as if I was “out of sight” I was “ignoring” her - ditto if I decided to read a book.

Hi Susie,
Surj is the same, he thinks I’m ignoring him if I am reading or watching the TV to follow a programme. If he’s absorbed in the internet then I can surf, read, watch T V. I always have the subtitles on too it used to because he doesn’t understand speech well but can read, but also because he is quite noisy and I can’t always hear the dialogue.

I like crotchet too but my hands have arthritis and I can’t do it for very long at a time. Must dig my scarf out again … might be ready for this winter :rofl:


Hubby used to follow me if I went upstairs to watch TV! I would get quite irritable not knowing what was happening to me. Would keep asking me what I was doing if on my tablet. I couldn’t concentrate on anything. My mind was constantly on the concern of what could be wrong. Even after all this time of being on my own I can’t settle to reading as used to.

S comes to find me too. He does pop upstairs himself for a bit after breakfast and after dinner - but I have to check on him and listen out for him.
This is the 24/7 part of caring non-carers don’t understand. It’s not easy to become absorbed in anything or getting anything done when caring too.

A shame you still can’t get into reading. I love a good read when S is out and I get the chance.


When M is home with me, he wants my attention 100% of the time.
I’ve given up trying to do anything meaningful when he’s home. He might be quiet doing something he wants to do but as soon as I try to do anything he’s there, in a flash.
Mencap gave him a tablet, great in theory, but now I have to spend so much time going through pictures of days gone by when we used to go to steam rallies etc.

Hi BB, your evenings when M is home, sound similar. Shared memories are important to S too, he likes talk about these with me on his talker. It’s something we all enjoy doing, but I think S only does it with me. Is M the same?

I’m lucky that when S is using his iPad or laptop he is independent - he only requires support from if he spends too much time on it as they he starts asking for ideas to search.

I think the advantage you have with M is that he is used to putting himself to bed and you can ‘retire’ to your bedroom ‘suite’. S needs prompts and once I bed is often vocalises for a bit, which I can hear in my room.


I had this problem when mum was delirious, she was desperately insecure and watched me like a hawk for any sign of sadness or irritability, and it would send her into a flat spin of upset if I didn’t have a big smile and cheery attitude. I couldn’t give my attention to anything else but her, she would scream and cry and plead pitifully for me to pay her attention. It was utterly exhausting. She couldn’t read, watch TV or do anything - she was too poorly and distraught.

I’m really lucky - all the health care professionals though mum had dementia, but it wasn’t that (or it’s in very early stages) and her memories gradually returned, she gradually became less anxious and now she doesn’t worry much if I go out for an hour or go upstairs for “a rest” (I’m really just taking a bit of time out to think my own thoughts and watch something I want to watch on TV of course).

Mum now loves watching her favourite shows from back in the day on DVDs, and she does jigsaws on her tablet - there are lots of free apps you can get. At first I had to set it to very few pieces but now she’s doing 63 piece ones (very small on her tablet!) and she really loves that. I really never thought she’d do any of that, but her cognitive recovery has been miraculous. She still doesn’t read, but I will keep trying.

Sadly now mum’s breast cancer has returned and spread so she may not have much time left but I am so thankful that she has her memories back at least for a time.

I do sympathise - the physical care is exhausting and carers have so little energy left for seeing to all the emotional and intellectual needs as well. Hope you find a way to get a bit of an escape! I use my laptop while mum watches TV, and mum has now accepted that I go into my own world a bit on it - I can tell she doesn’t really like it but it’s very necessary for my sanity!


Thank you for your reply. It does sound as if your Mum is so much better psychologically now since the delirium has gone, great that you have found activities for her to enjoy again. Sorry to hear her breast cancer has returned.


When M is home with me, especially on holiday, it’s more or less non stop.
By nature I’m a chatty person, and in many ways, so is M, but his speech and language difficulties make it so much more complicated. He was more or less an elective mute until he was 8, mainly using Makaton. However, he would whisper all sorts of things to me in my ear which I understood.
I’ve spent my entire life trying to get him to speak up more for himself.
Here’s a classic example.
New member of staff took him to Poole Quay this weekend, so they could see the Sunseeker boat factory (the ultra expensive boats that feature in James Bond films). He told me they also saw the boats going to Brownsea Island, a National Trust property. He has a NT membership card for him and any carer, but he didn’t tell staff, and staff didn’t, apparently, know either.

However, Social Services won’t see him when I’m present, contrary to proper procedure, something the solicitor is going to address. So they never see the good relationship between us, or how well we communicate. He is conscious of his speech problems, and moderates his language so that the other person will understand. He is also eager to please and will give what he thinks is the answer they want to hear.
So if they ask “Do you want staff at your flat until 9pm?” He would say “No”.

However, ask him if he wants to go bowling, to the cinema, or to see his friends in the evening, he would say “Yes!”
Social Services have said recently that M hasn’t contacted them to say he is unhappy about his care and support during covid.
Didn’t say that at that time he didn’t have a care manager and no one has a direct line to the local office.
Even for me, it’s difficult using the centralised system!

M loves to talk about the times when my husband was alive, and we went to a steam rally almost every weekend, I know it’s important to do this, but there are times when I’d like a bit of peace too. I spend most of my life alone, I’m just not used to having someone with me from the moment I get up until the moment I go to sleep, when he is home with me.

Because I sleep in what used to be the garage, and M’s bedroom is upstairs, sometimes I will say about 8pm that I’m very tired and need to go to bed early, just to get a bit of peace and quiet, but then I feel guilty about that too.

There are no easy answers to this one.

S likes to please too and doesn’t tell staff at college what he really thinks, he tends to tell me and I then have to advocate for him.

I totally get how important it is that questions are worded in the right way. This is why constantly changing social workers and support staff doesn’t work as they don’t know the best way to communicate with our carees.

I went to S’s review and they said as so many have before them, that he doesn’t use his talker to communicate with them spontaneously… as they were saying this he got out his talker to tell me something… I give them the strategies but they struggle to implement them.