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

Caring for someone with dementia can be challenging, and it can be difficult to find time to look after yourself. In this article you can read advice given to others going through the same situation.

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

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Discussions about Support for carers in our online community, Talking Point...
Discussions about Support for carers...

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.

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53 comments

My father is currently in hospital with a uti. A good period before this point there was a dramatic decline in his cognitive abilities . He has mixed dementia (vascular and Alzheimer’s). Mum has reached breaking point and doesn’t want him back. He is extremely verbally aggressive at all times and with all interactions as he can’t concentrate. Mum isn’t ‘allowed ‘ a tv or radio on as he will go into a rage and this effects her terribly. She is at his constant beck and call. He is paranoid that she is talking about him even though she gets creamed at if she answers the phone. His hearing deficit means he cannot use the telephone anymore. He has absolutely no insight into his condition and would never accept that he needs to go into respite or a carehome. Hospital are suggesting he may be discharged soon, even though I’ve told them no one is at home and he needs 24 hour care. I’m currently looking after mum. She is shattered and has lost a lot of weight. I have power of attorney health and welfare and jointly with mum for finances. What do I do? I don’t want to make a decision that is wrong for either of them. She doesn’t even want to see him t the moment.

Hi Jemima, sorry to hear about your father - that sounds like a really difficult situation.

First of all, I'd encourage you to contact our helpline, as they can offer you more detailed information, advice or emotional support. You can find the details here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

We do also have some information on our website that may be useful for you. Here's our guide to aggressive behaviour and dementia, including causes and advice on how to respond: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/sym…

For some background information on UTIs and dementia, this guide might be useful for you: https://www.alzheimers.org.uk/get-support/daily-living/urinary-tract-in…

We also have some information on when is the right time for a person to be moved into a care home: https://www.alzheimers.org.uk/get-support/help-dementia-care/care-homes…

Lastly, it's important that you and your mum also get the support you need and look after yourselves. We have a guide on the subject which you may want to pass on to your mum as well: https://www.alzheimers.org.uk/get-support/help-dementia-care/looking-af…

I hope this is all helpful information, and please do contact our helpline if you need more support.

Thanks,
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Alzheimer's Society blog team

I care for my mum who has joint dementia and my dad who is frail, blind and hard of hearing and he is also looking after mum! They have carers come in, I do their shopping, hospital appointments, paperwork, finances and emotional support. I also work full time, it can be a challenge and stressful juggling everything which is why I am pleased to know there is support for me.
My local carers centre have been really helpful, understanding and supportive. They are a good source of information and there are opportunities to meet with other carers, if you feel inclined, time allows and you have the energy! I now have my carers card which gives me peace of mind and cheaper parking at the hospital. Its not easy, Problem is 'you don't know what you don't know, which is why I have posted today. :)
East Sussex - Care for the Carers - Tel 01323 738390
Email: [email protected]
To find our where your local carers centre is: https://carers.org
I hope this helps
Carole

Hi all, I am Shirley, I live in Australia. My partner now needs my 24/7 company . I have been running our household alone for many years now . My respite has been plenty of gardening . However that is too hard now due to arthritis so I have sold our home...bought a Toyota Campervan and we are now going to join the grey nomads travelling South East Queensland for as long as good health allows. That way we can live in the “here and now” and have plenty of happy people to chat to. Thats my plan anyway. Hope it works out. Cheers for now. Shirley.

Hallofrom the UK
What a marvellous thing to do and I have thought about similar things myself. I am looking after my 83 year old husband with dementia and very little walking ability and like you, have my garden which has been my salvation, but even then I feel guilty if I am out there for too long . I worry how long I will manage mentally if I do nothing but look after him. We always had active holidays which makes it worse as I struggle to think of a holiday we can take where the wheelchair will be pushable and I can cope with Incontinenc etc. And yet I want to give both him and myself a change and some fun, as stimulation. Any thoughts please?

It’s a horrible deicease. My husband was diagnosed years ago. So hard to see my husband of 53 years become a empty shell of the man he once was. He is now losing his words. Very hard to know what he is trying to say. As he needs help with most things. He can still walk and goes to bathroom him self.. but needs help with everything else. To help me he goes to a adult day program for people with memory loss. This has helped me so much. This has relieved my stress level and now have time to take care of me. This way I,m hoping I can keep him home with me.
Also I have my children and adult grandkids to help me.. they come when they can. But all work and have busy life’s.

Sounds familiar. My husband is now letting me drive. Bought a new car and it’s keyless. He would drive and I would have to tell every move to make. In a month of driving he still tried to put a key in. If I leave him alone he will get in his truck and go someplace. So I never leave him alone.

Mum went into care home has got mental capacity & dol in place l find myself finding the care home. Not up to scratch leaving dirty pads with no bag no apron or gloves on walking to toilet with this poor dip pad in corridor also they have a small lift so what happens if medical staff need to get bed in. Also they don’t do blood sugars. Give her what everyone else eats. Asked the social if we can move her to somewhere else & cant afford the top up. As the social worker forgot to tell the home. We asked for the small room that was cheaper. Mum started to move away from other people. Won’t take her meds & cant remember who is who. At my tiether

The usual useless stock answers to carers problems. Until Dementia in all its forms is recognised as a disease nothing will change.iIm my husbands sole career & I'm due t go not hospital for a hip replacement and the only advice from Social Services is that 'your self funding so you can find you're own care' Havnt a clue where to start. This is after paying tax &Ni for 40+ years.

Mums just gone into care having to pay top up don’t won’t to feel like this but I can’t really afford the top up & finding myself feeling resentful to mum told the home &
Social I need to put mum somewhere cheaper. & also I don’t find the home very hyenic in their care ways.

I know how you feel I’m a caret to my husband of 35 years he has Alzheimer’s I feel so alone and lonely he won’t go to the day centre so I don’t get much me time I find watching him decline so hard to cope with I still love hiim Im just so tired

Hi Lynda I know exactly how you feel. My husband of 38 years was diagnosed 4 years ago. He has Frontotemporal dementia. I put on a happy face but I am really struggling. I feel so lonely and feel I have lost the person I used to be. It is a horrible disease. He doesn’t realise how bad he is which is good for him but to see a person you love go through this breaks me.

I also care for my husband on my own, he is 65 & was diagnosed with Alzheimer’s 8 years ago. His dementia has slow progressed and I now have to shave him and help with washing and dressing. Our situation has been made worse because he has an Illeostomy bag following bowel cancer surgery five years ago. Every morning I have to change his bag & assist with emptying it 6 to 7 times a day. I also have to wake him a couple of times in the night to empty his bag. Caring is very difficult & lonely. I really miss having somebody to help me make decisions. I find it very frustrating that his family do not understand or appreciate what I have to deal with on a daily basis. Some days I find it very difficult to cope and just cry. On the outside I am a happy person holding things together, but on the inside I am a complete mess especially when I think about the future.

l have completed a 11 year journey though the different stages of Alziemers with my wife of 55 years until now the final one which is death. While I was caring for her my health was secondary l did have an operation when she was first diagnosed and l was more worried about her than the operation. Your Colds and feeling down and stressed and tired dont seem to mean anything to the one your caring for, you just have to keep going. No one is there to help you family members dont answer their phones you do feel isolated.
l did get 4 hrs a week respite after a while when she went to a day centre . it was difficult to get her there and l had to tell her where she was going at the last minute before the transport came to pick her up. When she came back she was in a very aggressive verbal mood with me for hours . Was this worth my 4 hours respite ?

I’m dealing with my mother for the past three years.Its very hard to watch your parents go through this.Sometimes not recognize you .

My husband was diagnosed with FTD October 2018. So far no major change. He is still independent and as long he’s not out of his comfort zone he’s doing ok. He’s considerably slower and tires easily. I’m not really sure what to expect or when real change will happen .

I care for my husband with three amazing grown up children all have family and full time jobs . and 2 fantastic friends . No help from any one else. He only wants the people he knows . I will keep him at home as long as I can . If I do need more help then it will be carers at home for him
Really hard to get time for me and not interested in me really . My motivation has gone too tired to think about me . The man I married 47 years ago has left his body but he’s still here . Just take a day at a time now .

.

I was a Carer for several years until the unexpected death of my Wife in 2016. No one was available to help me manage her declining health until I discovered the NHS have a scheme called "Continuing Healthcare". If you can qualify they pay all the costs of providing care whether in your own Home or in a Care Home. This is NOT means tested, unlike Social Services Care services.
Because it was so difficult to convince NHS that our Care Needs were complex I launched a website that has helped lots of people to obtain Professional Care, which includes Respite Care for the Main Carer. Details are on https://continuinghealthcare.wordpress.com/
I hope you are all able to get the Care required & be able to look after yourselves as well.
Best wishes. Peter Garside

Thanks for sharing, Peter. We hope you're keeping well.
A diagnosis of Alzheimer’s or indeed any type of dementia does not carry automatic eligibility for CHC, as much as we would like it to. Eligibility for CHC funding is never ’condition specific’ and relies upon identifying the person’s needs in line with the criteria laid out by the Department of Health.
Here at Alzheimer’s Society, we suggest that the best way for people to access NHS Continuing healthcare (CHC) if they think they are eligible or they represent someone who they think is eligible, is to inform themselves fully of the CHC criteria before the process starts.
Take a look at ‘Tips on preparing your case for NHS continuing healthcare’ (https://www.alzheimers.org.uk/get-support/help-dementia-care/nhs-contin…) and download our free booklet for further information.
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Alzheimer's Society Blog Team

i totally sympathise.my husband was diagnosed last october but his condition is worsening by the week.there is nothing that prepares you on how to cope.its both heartbreaking and soul destroying as well as very frustrating.to slowly lose your love of 52 years.he cant be left alone or go anywhere on his own.crying in the bathroom is the only release i have.the kids are great but they all have busy lives an couldn,t be with him for any length of time.