Expert Q&A: Looking after yourself as a carer - Friday 25 January, 3-4pm

[AngeloM]

There have been a few mentions of the person with dementia not being who they were anymore, and also thoughts around adjusting to changing relationships.

As dementia progresses, there will be a number of changes and adjustments to make, and I know that it can sometimes feel as though you are trying to keep up with all the various things that seem to be happening at once. It is common to feel that you are spending more time as ‘a carer’ than as ‘the husband/wife/son/daughter/and so on’. This is one of the reasons that ongoing support is so important, whether that is from friends, family, health/social care professionals, or others. It might not be possible to change the situation itself, but if you are able to get support then it can make a big difference to your own emotions.

It can be difficult for everyone to adjust to the way that the roles in the relationship are changing, especially if you find yourself having to do things that you are not used to. Often with couples, for instance, household chores and responsibilities are shared out, so one person might handle finances while the other does more hands-on things are the house. If this changes, it can add to what may well already be a stressful and demanding situation.

It’s really important to try and be as supportive of both yourself and the other person as you can. It can help to look at the positive things in your relationship that are still there, and some reminiscence and life story activities can be a good way to remember and talk about shared life events together. Reminiscence activities generally involve talking about themes from the past (using prompts such as photos and things like that). Life story work is useful as you and the person remember and record details about their life, experiences and beliefs. And this of course can include your shared life together.

Depending on how the person is affected by dementia, it might also be useful to look at new activities that you may be able to do together.

As with so much in dementia care, there often is no easy answer I’m afraid. It can be helpful to remember that the changes you are seeing are part of the condition and so are not in the person’s control. Again, I know this can be easier said than done, especially if a person is saying hurtful or personal things to you. Knowing that, were it not for the dementia, they wouldn't be saying these things can be a more positive thing to focus on.

 

[SophieD]

Now for a question that we received via email:

"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?"

 

[AngeloM]

Now for a question that we received via email:

"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?"

Thanks Sophie.

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.

You might also find it useful to look at our website for more information on these assessments, how they work, and how to arrange one.

All the best.

 

[LouLou23]

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.

 

[HarrietD]

Thanks @LouLou23 for your question. Angelo is just working on a repsonse

In the meantime, here's another one we received by email:

Where and when is the carer supposed to find the time and energy to do this 'looking after yourself?" I have a Wednesday from 10am to 3pm of free time when PWD goes to day care, though sometimes it is cancelled because of the weather or staff shortage, sometimes he is collected late and returned early. 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.

 

[AngeloM]

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.

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. You can find out more on our Assistive technology page on our website.

It's definitely natural to worry about a person that you care for - even if they're not at a distance - but hopefully some of these things will help.

All the best.

 

[AngeloM]

Thanks @LouLou23 for your question. Angelo is just working on a repsonse

In the meantime, here's another one we received by email:

Where and when is the carer supposed to find the time and energy to do this 'looking after yourself?" I have a Wednesday from 10am to 3pm of free time when PWD goes to day care, though sometimes it is cancelled because of the weather or staff shortage, sometimes he is collected late and returned early. 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.

Thanks Harriet.

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. I would recommend giving the Helpline a call too, as they can give advice, information and also emotional support. Their number is 0300 222 11 22.

In terms of the Carers Assessment, if social services have said that your OH should have 2 days a week at daycare and 6 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. There is more information about this on our website under Replacement Care (Respite Care) so that might be worth taking a look at for more specific information.

I hope this is helpful.

 

[HarrietD]

Ok, it's time to bring today's Q&A on looking after yourself as a carer to a close. Thanks to everyone who asked questions either on this thread or via email, and a massive thanks to @AngeloM for kindly giving his time and expertise I hope you've all found it helpful.