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

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?

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

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.

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 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?

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

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

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

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?

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

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.

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

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 .

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.