Q&A: How can you look after yourself as a carer of someone with dementia?

Our Talking Point online community is a place where people with dementia, their friends and family, can share stories and support each other.

We had a Q&A session on the forum, with the topic of 'looking after yourself as a carer'. Carers could ask questions and get answers from one of our Knowledge Officers. 

This blog post has some of the answers that our Knowledge Officer gave to questions from members - you can read the whole Q&A here.

Question 1: 'What tips are there to keep mental spirits up?'

"My circumstances are nowhere near as bad as others so a part of me feels guilty just posting. I care for my mum in the early stages of vascular dementia.Other siblings visit fairly briefly once a week. Mum does not acknowledge her condition so it cannot be discussed in front of her.

Basically, I am the sole carer, gave up a day job, and now work two nights a week in a supermarket. I’m feeling increasingly isolated, my interests are slowly failing to provide any spark, the emotional tank is getting pretty flat.

Anxiety is starting at the margin. I meditate, recognise the need to take care of myself, starting a fitness regime recently after putting on a stone in the last year.

What tips are there to keep mental spirits up? It feels like I am alone but live with someone very precious to me. Does that make any sense?"

- Question from user Whisperer on Talking Point

Our answer: 

"Yes, that definitely makes sense. Dementia does affect relationships and it can feel very isolating if the person that you would always talk to or confide in is the person who has dementia.

It’s really positive that you’ve started a fitness regime and try to make time to meditate. A big part of looking after yourself is trying to take whatever time there is to either do something nice for yourself or take a break – even if it ends up only being a small one.

I’m not sure how much scope there is in your job at the supermarket to work some time in for yourself (for instance during your breaks, or even while travelling there and back by listening to music, podcasts, or audiobooks).

I’m wondering if any of your siblings could maybe lengthen their visits at all, as this might give you just that little bit more time to either take a break or do something that you enjoy. I know that can be easier said than done, but it might be worth letting them know how difficult things are so they can help out more. 

In terms of feeling anxiety, it might be useful to speak to your GP about this.

It’s very common to feel anxious as a carer, and it’s so important that you get support. 

I think a lot of people will identify with the feeling of ‘losing yourself’ while helping out the other person."

Question 2: 'I do feel sorry for myself but then I read other members circumstances...'

 "In the early years, I threw myself into Alzheimer’s groups and events involving other people I met at them. I’m very glad I did as I met good people and learned a lot.

However, as I was helping my husband through this difficult time I was losing myself and the things I cared about. I did a lot of historical research and had to give that up as my husband would go out wandering and getting lost if he didn’t have my total attention.

We are now in the seventh year and he is too immobile to go wandering but needs 24/7 care and I just don’t have the time to go back to my interests. I bought a new laptop 3 years ago and it is mainly untouched. 

I do feel sorry for myself but then I read other members circumstances on Talking Point and recognise that life could be so much worse and so much harder. Daycare and occasional respite in a good care home are lifelines that all carers need." 

- Question from Talking Point user marionq

Our answer:

"I’m very sorry to hear that, and I think a lot of people in similar situations will identify with the feeling of ‘losing yourself’ while helping out the other person. 

I’m not sure if social services are involved, but a carers assessment may help if your husband needs 24/7 care.

Carers coming in may give you some much needed time to rest, or – as you’ve mentioned – daycare or replacement/respite care may also help. 

I’m wondering if there might be a way of adding elements of your interests into daily life – so for instance if you and your husband could sit and watch a historical documentary together. It may be that he is unable to follow it, but if it is something that he is or used to be interested in then he may find it visually stimulating.

Similarly, listening to a historical programme on the radio or as an audiobook/podcast while doing other things in the home might be a way to enjoy this interest again (although I do understand that it won’t be exactly the same)". 

Question 3: 'How can I convince Mum to go for a break somewhere?'

"I would love Mum to go into respite care to give me a break but she won’t and insists she can manage at home on her own (she can barely get herself dressed or keep hydrated).

I can’t physically force her to go somewhere and short of lying to her to get her into the car I am stuck. 

A few years ago when she was in hospital they did an assessment in a mock kitchen. Do they do anything similar to grade her abilities to cope for herself and then if they see she can’t be able to intervene and convince Mum to go for a break somewhere?"

- Question from Talking Point user

Our answer:

"Generally, this type of assessment looking at how a person copes in their home would be done by social services.

I’m not sure if they’re involved here, but it might be a good idea to get in touch with them so they can carry out a needs assessment. Or, if they have already done this, to request a reassessment – which is a very reasonable request when a person has dementia as things can change quite quickly. 

Social Services should also take into account the things that you are saying as – as is so often the case – a person with dementia will generally not have the insight into their condition that others have and may genuinely believe they are still able to cope.  

It’s important to note that if you feel your mum is at risk and/or vulnerable then you can call the Safeguarding Team at social services.

If you call the main social services number or look on their website, then you should be able to find details of how to contact the safeguarding team."

Question 4: 'I need advice on being a distance carer'

"Is there any advice you can give with coping being a distance carer? Trying to deal with things with phone calls? I still worry about mum although she is miles away from me with a carer calling in."

- Question from Talking Point user

Our answer:

"I'm sorry to hear that, it can be quite difficult caring from a distance I'm afraid. 

Something that can help is having a Power of Attorney (or Deputyship) in place, as this should mean that health/social care professionals and organisations will speak to you. It can make things a bit easier regarding trying to sort things out for your Mum. 

Having regular communication with the carer can also help, and if social services are involved then the carer may be able to let you know if your Mum needs a re-assessment as she requires more care."

There are a number of different technologies that can help too. Things like panic and alarm buttons, as well as motion sensors and sensor pads can be useful.

These vary in how they work, with some letting you know if your Mum has, for instance, stepped out of bed or walked into the kitchen. That way you can tell if your Mum is going about her daily routines or if something seems to be irregular.

This type of technology can feel slightly intrusive, and it is very important that if a person has mental capacity that they are fully aware of - and consent to - these types of technologies."

Question 5: 'When and where is the carer supposed to find the time to do this?'

"Where and when is the carer supposed to find the time and energy to do this 'looking after yourself?' 

I have a Wednesday from 10 am to 3 pm of free time when PWD goes to daycare, though sometimes it is cancelled because of the weather or staff shortage, and sometimes he is collected late and returned early. The carers assessment (14 months ago) said that we should have 2 days a week at daycare and 6 weeks of respite per annum.

So far there is only a place available for one day a week and I have had only 2 weeks of respite. Now the Centre is under threat of closure and not taking advance bookings for respite.

Now that OH is incontinent, both daughters will not take sole charge of their Dad ( I don't blame them for this). They still visit and take us out but only if I am there too. So no me time, unless you count the hour or so once OH has gone to bed - though even then he keeps reappearing demanding that I join him in bed."

- Question from Talking Point user

Our answer:

"I’m really sorry to hear about this, and I know that making time for yourself as a carer isn’t easy. That really is the big question.

I think all carers know they should be making time for themselves, but it's more about how to do that in sometimes incredibly difficult and pressured situations.

I’m not going to pretend there are any simple answers here, and sometimes all you can do is snatch time when and wherever you can.

How to do this will be different for everyone, and as I've mentioned to a couple of people above, it may be a case of making time on a commute or during a break at work. 

You might find it helpful to speak to your GP about how you’re feeling too, as they may be able to make more suggestions about ways that you can get support.  

In terms of the Carers Assessment, if social services have said that your OH should have two days a week at daycare and six weeks of respite per year, then it might be a good idea to let them know that the Centre may close and that they’re not taking advance bookings for respite care. If social services are even partly funding your OH’s care, then they have a responsibility to find suitable placements.

Even if they are not funding any of the care, they should still be helping in terms of suggesting alternative places. Get more information on our website about Replacement Care (Respite Care)". 

Get help and support

If you would like to talk to people in similar situations to yourself, visit Talking Point, our online community for anyone affected by dementia. You can also call our Helpline for advice and support over the phone.