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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

Hi, my name is Helen and I am sole carer for my husband who has a rare and rapid onset form of dementia. Fortunately, I am strong and fit and am managing with his double incontinence, mood swings and generally disruptive behaviour. What I am struggling with though, and I can’t find mention of this anywhere, is how I’m supposed to cope with the lack of intimacy and sexual activity this has led to. Yes, I can masturbate and get a variety of toys to support this, however, that doesn’t replace the skin on skin contact of a caress for instance. I miss the unplanned impromptu sex, the tender moments, of being passionately kissed and of simply being cuddled. I feel like I will never get these times again and to say I miss them is understatement. I try not to think about it and keep myself so busy that it’s all I can do to fall asleep as soon as my head touches my pillow. However, there are moments when my mind wanders and I think of all I’ve lost and it makes me cry. How does everyone else cope?

Hi Helen,

We are sorry to hear about this difficult situation with your husband. It is not uncommon for the partner of a person with dementia to miss intimacy and sexual contact. We recommend you read the information we have on sex and intimacy here: https://www.alzheimers.org.uk/get-support/daily-living/sex-intimacy-dementia.

You might like to talk with other people affected by dementia within our online community, Talking Point. Feel free to browse and read others' experiences, or you can create an account to reply and connect with others who may be going through a similar situation: https://forum.alzheimers.org.uk/.

We also suggest calling our helpline and talk to one of our Dementia Advisers, who can provide information, advice and support based on your situation. You can call our Dementia Connect support line on 0333 150 3456. Find more information about the support line, including opening times, here: https://www.alzheimers.org.uk/dementia-connect-support-line.

Again, we are sorry that you have been struggling, Helen.

We hope this helps.

Alzheimer’s Society Blog Team

Hello my name is Tammy I’ve just started looking after my mother in-law with dementia she had a fall at home and had an operation on her hip and I started to look after her for 3days it’s very hard she where’s nappy pants to control herself but still makes a mess I’m not professional I had to clean her mess every time we have had nurses come and check on her day to day but still nothing has changed her 4 boys don’t want her to go into a nursing home but I can’t cope it’s just not for me she’s in hospital for now doing more test but the boys are still waiting me to take her on what can I do it’s so hard I’ve tried

Thanks for getting in touch, Tammy. We're sorry to hear about this difficult time you're going through.

We'd recommend talking to one of our advisers through our Dementia Connect support line (0333 150 3456). They will listen to your situation and provide you with advice and support. Find more information about the support line, including opening times, here: https://www.alzheimers.org.uk/dementia-connect-support-line

Please do call the support line during these hard times, Tammy.

Alzheimer's Society blog team

My mum has recently been diagnosed with Alzheimer’s and has just begun medication. I have four siblings and we all live close by. We have organised a rota to visit mum and support my Dad. However, not seeing my mum over lockdown and seeing her now has come as a real shock to me. I don’t understand why everyone is coping so well (they might not be) I worry all day about visiting and struggle to fit them in around work and my own children. I feel traumatised when I leave my mum as the changes seem to have appeared overnight. I feel guilty I don’t do as much as the others. My biggest fear is that I say or do the wrong thing and upset my mum. My husband has kindly taken my place this week on the rota but I am struggling to face going there again without getting upset. I love my mum but I am struggling to know how to deal with the situation. Work is very stressful at the moment which is probably why I struggle to keep my emotions in check when I am with her. I want to help but I feel helpless.

Hello Claire,

We're really sorry to hear about your mum's recent diagnosis. This must be such an emotional time for you. Please know that support is available and we are here for you and your family.

You may find it helpful to talk to one of our Dementia Advisers for information, advice and support. You can call our Dementia Connect support line on 0333 150 3456. Find more information about the support line, including opening times, here: https://www.alzheimers.org.uk/dementia-connect-support-line

You might like to talk with other people affected by dementia within our online community, Talking Point. Feel free to browse and read others' experiences, or you can create an account to reply and connect with others who may be going through a similar situation: https://forum.alzheimers.org.uk/

I hope this is helpful, Claire. Please do call the support line if you need us.

Alzheimer's Society blog team

My mother in law was diagnosed with Alzheimer’s nearly 2 years ago, although she still says that she hasn’t got it and is ‘getting it’. My husband has never had a close relationship with her, she is divorced, no longer speaks to her daughter and other family members, so it’s all falling to my husband. He suffers with anxiety and mild depression and this situation is making things worse. We have 3 teenagers still at home, he works long hours and also has to deal with the needs of this father! Things are quiet for a while with my mother in law but every so often we get outbursts which are often of the accusing/paranoia type directed at me (I’m trying to steal her money, blackmailing her, stopping her from seeing the children). This is becoming more stressful for my husband and often results in him ‘hiding’ in a bottle of wine. I’m really concerned for his mental and physical health. I feel that we have had NO support at all from specialists/the GP. She was prescribed medication at the time but as far as I’m aware she doesn’t take it. She is still able to care for herself and live on her own, but we feel ‘obliged’ to call in or invite her for tea etc however these visits are often very stressful leaving us wishing that we hadn’t bothered! We are at the point now of feeling that we just want to leave her to her own devices to protect the health and well-being of my husband. I know it sounds harsh and un-caring, but there’s been no love or care in the relationship between her and her son for the 30 plus years that I’ve known her. How do we deal with this?

Hi Deanne, thank you for your comment.

It sounds like a really tough time for both you and your husband. We'd recommend calling our Dementia Connect support line on 0333 150 3456. Our dementia advisers can listen to your situation and provide advice and support.

The support line is available seven days a week: https://www.alzheimers.org.uk/dementia-connect-support-line

Some people also find it helps to talk with others who have gone through or are going through similar experiences. If you think this would help, you can visit our online community, Talking Point, for peer support: https://forum.alzheimers.org.uk/ It's free and open day or night.

We hope this is helpful, Deanne.

Alzheimer's Society blog team

Hi all, I care for my husband who has had Alzheimer’s for the past 5 years. He’s bed bound now, and I have to have carers to twice a day to help me turn him. Because we’re self funding I cannot justify any money for a sitting service. How does any one else manage everything and time out, when your the main Carer 24/7?

Hello Linda, thanks for getting in touch.

It sounds like you might benefit from talking with other people affected by dementia within our online community.

Talking Point is free to use, and open day or night: https://forum.alzheimers.org.uk/

People use Talking Point to share their own experiences and talk about situations they are going through.

We'd also recommend calling our Dementia Connect support line on 0333 150 3456 if you are seeking dementia information, advice and emotional support. Our advisers are here for you seven days a week: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this is helpful.

Alzheimer's Society blog team

Hi, my husband who is 59 has just been diagnosed with early onset Alzheimer’s,
He has lost his job this year due to his memory and functioning difficulties,
I don’t know where to start or what to do, any suggestions

Contact Age UK , they will give you advice on what assistance you can get, and what financial help you can claim for. This is NOT means tested and is an ENTITLEMENT. Don’t be scared of asking questions, it’s surprising how many people are in the same situation. Good luck

He is not in the age range for age UK as he is 59,

Here in Norfolk we have an younger onset dementia support group (youngest diagnosed in 40s, oldest in 70s) convened by local Alz Soc consists of people with dementia and spouses/partners/unpaid carers. We have been running for a few years and the group is a life-saver. We exchange info on a range of practical stuff, financial and emotional as well as a vibrant social support.

Because of Covid, we can't now meet up for bowling, garden visits, music gigs, meals out, beach walks, shows and at socials at each other's houses, but we continue to talk via WA and Zoom - even doing virtual wine tasting and quizzes. We tell it like it really is and are supporting each other through thick &thin - and it's really thin at the moment. Ask your local Alz Soc if you have one similar near you - or get them to set up a virtual one like our Norfolk group.
There may also be a Carers' group near you, like Carers Matter Norfolk. Hope this helps. x

My mum has after 4 years of me telling doctors there was some problem, been diagnosed with dementia of multiple types. Great, but nobody has explained what the prognosis will be. I am so scared what is going to happen to mum. Meds which she has been given seem to have made things worse

Hello Pauline, thanks for getting in touch.

We're very sorry to hear about your mum's dementia diagnosis. This must be a difficult time for you and your family.

We do have a guide available that can help you understand more about dementia, changes that will happen over time, and making plans for the future: https://www.alzheimers.org.uk/publications-about-dementia/the-dementia-…

If you're looking for further dementia information and support, we'd recommend speaking with one of our trained dementia advisers who can listen to the situation regarding your mum's condition and the medication she is taking. You can call the Dementia Connect support line on 0333 150 3456: https://www.alzheimers.org.uk/dementia-connect-support-line

Some people also find it helps to talk to others going through a similar situation. If that appeals to you, take a look at our online community, Talking Point. You can share your experiences and ask questions of the community, or just read what other people have to say: https://forum.alzheimers.org.uk/

We hope this is helpful. Remember to call our helpline whenever you need dementia advice or support.

Alzheimer's Society blog team

Sorry to hear of your problem with your Mum and her illness.My wife of 50 years has had Alzheimer’s for ten years and I am her full time carer. It was only until recently I realised how little I know about my wife’s diagnosis and prognosis, like yourself. When I asked questions, I couldn’t get anywhere with my GP. I said I would make an appointment with a private hospital for a MRI scan , this seemed to kick some life into the medical people concerned and I finally got a face to face consultation with the doctor who “ diagnosed “ my wife’s illness. It’s depressing to keep getting fobbed off, but you have to persist. You can DEMAND a copy of the medical records from your GP and by law, they have to be provided. As for the medication, you MUST tell your GP , my wife was having palpitations with her prescription drugs, these were changed immediately, but I also don’t know if they do any good. I hope I may have helped

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

Hi Peter
My heart goes out to you
My dad is going through the same thing at the moment he really is struggling to cope and the covid has kept us all away from them
Your doing an amazing job x

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?

You can apply for a carers allowance, which is NOT means tested. There is a scale of awards depending on the level of disability, and how many hours you are the full time carer . This is an ENTITLEMENT and believe me it doesn’t come anywhere near what carers deserve. Age UK , or on line Help will give you all the information that you need. Do it ASAP and good luck

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

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.
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Alzheimer's Society blog team

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.

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.
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Alzheimer's Society blog team

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

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.
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Alzheimer's Society blog team

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 .

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.
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Alzheimer's Society blog team

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

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.