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Q&A: Looking 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. 

Recently, 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 Angelo, one of our Knowledge Officers. 

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

'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

Angelo's 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

'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 TP 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

Answer from Angelo: 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). 

'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

Angelo's 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. 

'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

Angelo's 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.  

'When and where is the carer supposed to find the time?'

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.

- Question from Talking Point user

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

Answer from Angelo: 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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This year my wife Allison and I have been married for 50 years ,and for ten years she has been suffering from Alzheimer’s. I am my wife’s full time carer, and get NO HELP from any NHS organisation. I grind myself into the ground day after day to care for her. It is soul destroying and sucks the life out of you. I sympathise with all the carers who have posted their comments here as we are all in the same boat. The government will always find an excuse why more can’t be done to help both carers and sufferers. The only thing that keeps you going is the love you have for the sufferer. I can only say ....Best Wishes to all us Carers

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Hello all,
My dad who is in his mid seventies and cares for my mum who has very severe dementia. He is totally exhausted and would like a break by way of some respite care for my mum but he cannot afford it. He does pay for a carer once a week to bathe my mum at home etc. I would willingly give up my job to care for her and to give him the respite he needs. My question is this:
Could I possibly be paid as my mums full time carer, and if so, off who?

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I have looked after mum with Alzheimer’s now 3 years my bro and sis never come at all
I now have had enough SS coming to see me can they make me carry on looking after mum I’m at breaking point now
Mum repeats over and over again what’s food all the time
And follows me Every where I go
No peace at all

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Hi Elaine,
Sorry to hear about your mum's Alzheimer's diagnosis - that sounds like a difficult situation for you.
We'd strongly recommend calling our helpline to speak with one of our dementia advisers - they can provide information, advice and emotional support. You can find the contact details and opening hours here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
If you haven't already done so, you might want to enter your postcode into our Dementia Directory to see what support is available in you local area: https://www.alzheimers.org.uk/find-support-near-you
Hope this is helpful - please do call our helpline if you need support.
Alzheimer's Society blog team

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My husband has been ill for 30 years. He had Aplastic Anaemia at 27 and was successfully treated by a wonderful NHS Haematologist. He’s had a brain haemorrhage, has Epilepsy and was diagnosed 22 years ago with Multiple Sclerosis. He went into a coma whilst in hospital and has also had a suspected mini-stroke. Three years ago we were told he had MS Dementia, although I reckon he’s had this since 2012. He has an indwelling catheter and is disabled. He uses a Zimmer frame with great difficulty in the house and I push him in a manual wheelchair outdoors. However, I am having to limit the wheelchair pushing due to osteoarthritis, carpal tunnel syndrome and Cervical Spondylosis, which I think has been caused with 24/7 caring, as I have to do everything for him. I arranged four hours respite a week and he enjoys the music therapy and chatting with others. He is asking me the same questions over and over again and has frequent bowel accidents. He has Optic Neuritis and Nystagmus too. I do my best, but it is very lonely.

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Hi there S, thanks for getting in touch.
It sounds like you're going through a very challenging time.
Please do contact our National Dementia Helpline to speak with one of our advisers for advice and support on 0300 222 11 22. The Helpline is open Monday to Wednesday (9am-8pm), Thursday to Friday (9am–5pm) and Saturday to Sunday (10am-4pm). Find out more here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
In addition, you may find it useful speaking with other people affected by dementia about your experiences. This may help with the feelings of loneliness, too. Join Dementia Talking Point, our online community: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…
All the best.
Alzheimer's Society blog team

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My mum is in care . She is terified of showers and also had a fall in her bath a few years back this has also terified her. I give my mum personal care every day and shd is kept clean . I have spoke to the manager regaurding this but she still tells her staff that she wants my mum showered . Torally egnoring what i told her. Also my mum likes to stay in her bedroom watching tv. She likes to potter about doing her own thing . She doesn't like going to the lounge but again the manager has told staff that she wants her out her bedroom and again egnoring what i have told her. Do i have the right to refuse this as her daughter and next of kin

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Hello Mags, thanks for getting in touch.
We're very sorry to hear about the difficulties you're currently facing.
In relation to your mum's well-being in the care home, you might find it useful to arrange a 'best interest' meeting with the manager and a social worker to discuss the concerns you have and to find a resolution. This would also need to form part of your mum's care plan.
Prior to this meeting, you might want to consider what needs to be put in place in the event that you cannot be there for any reason to do the personal care for your mum.
If you have Lasting Power of Attorney for health and well-being, make sure that the manager and staff are aware of this and have a copy of this in your mum's file.
For further information, advice and support, please contact our National Dementia Helpline - our advisers are available seven days a week on 0300 222 11 22. More information about the Helpline: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
We really hope this helps, Mags.
Alzheimer's Society blog team

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I am at the early stages with my sister last year she was told she had alzhiemers but didn't say to me or the rest of the family she had it . i work nightshift in a supermarket and to be honest I thought it was old age and she keeps crying not wanting to go out to church or to see friends she has been bringing me down as well I have been worrying about her thinking perhaps it was the loss of my brother who died unexpected from a heart attack I have not had time to grieve as I have been seeing to her ,she ends up burning her food by walking away and forgetting it hence burnt offerings I have now taken over the cooking by preparing meals she loves to be waited on hand and foot and I get rather ratty I'm worried about my job as this year I've been ill with chest infections and now depression I cannot afford to loose my job as I pay the mortgage .I'm wondering if it's all related to being at breaking point with my nerves on edge, I have taken her to the doctor to be assessed as she is in denial but we have told her she won't be put in a home like my mum I will do my best to look after her but I'm fretful of finances.the doctor has seen her and put her in for straight referal.she said I needed to go sick as I had very bad depression I have gone into not wanting to speak to anyone being ratty bad tempered feeling no good about myself but trying to cope .

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Hi Amanda. We're sorry to learn about this difficult situation caring for your sister.

We'd recommend contacting our Helpline, as our advisers can offer you detailed information, advice or emotional support. You can find the details here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

You may also benefit from sharing your experiences within our online community, Dementia Talking Point, where you can speak to other people in similar situations and feel less alone: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

It's important that you get the support you need and look after yourself. We have a guide on the subject which you may find helpful: https://www.alzheimers.org.uk/get-support/help-dementia-care/looking-af…

We hope this is useful, and please do contact our Helpline if you need more support.
Alzheimer's Society blog team

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Since 2017 I have cared for my mum who is now 89, blind, partially deaf, has increasingly poor mobility and short term memory loss which is getting worse. We have NO support. No family, no carers-nothing. I am sure my mum has dementia but I am unable to take her to a GP for diagnosis as she is not well enough to get there. Anyway I am exhausted every day and too tired with cooking, cleaning, guiding mum to the toilet 15 times a day and twice at night. Usually 4 hours sleep is good if I can get it. I can no longer leave mum while I go out for more than 10 minutes a she forgets where she is and is at risk of falling. I had a carers assessment-offered 2 hours a week break. Quite honestly, you would think this was a HUGE deal and I should be thankful. I get some insincere sympathy from so many but no help. Our lives are over now. That's it. I am literally counting the days until mum eventually dies. I have been tempted to just drive off and live on the streets to get away or deliberately crash and get myself some peace in hospital for a few weeks.

As for carers taking care of themselves well how can I? I can't be ill, see a doctor, dentist or optician. I am 58 and my life is over. I am past caring about most things. I can never see any friends, have hobbies, go out or ever have a holiday. People always say I should take mum out. I cannot manage to look after her alone anymore. Always advice and no hep in this lousy country. The last straw is not being able to go to a friends funeral.

One day I am giving up altogether. I hate seeing my mother lonely and suffering. Honestly, it is reaching that point where we would both be better off dead. And as I can no longer take care of my health anymore, that might be very soon. I would strongly recommend AGAINST being a carer-you will live to regret it-and die-no matter how good your intentions

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Currently in a dilemma about whether to move my 63 year old husband into a Care home. Anyone who can advise me? Short story: he stopped working 12 years ago, diagnosed with eoAD 5 years ago, assessed as needing 24/7 Care 4 years ago. Currently has next to no long or short term memory, cannot process tasks even personal care, cannot have a conversation. Physically very fit. Walks a lot. I pay for some day care while I work part-time. Is is too early for residential care? What might his life expectancy be? How do I answer these questions? Self-funding so no SS involved. GP clueless.

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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.

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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.

Alzheimer's Society blog team

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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

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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.

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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?

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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.

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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.

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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

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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.

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