Mum has been back at her former care home since last Friday. This has enabled me to attend a mindfulness teacher training course in Oxford and take holiday with my husband, Jack. After six weeks looking after mum, I felt physically and emotionally drained when I dropped her off. As I drove away I felt lighter. I have cherished every moment of freedom, and I have gradually recovered normal sleep.

The extended trial period with mum living back at home is over, so now is decision time. I set two tests to decide whether to keep mum at home: 1) Is she significantly happier back at home? and 2) Can I cope with looking after her?

Is mum significantly happier?

I can’t say that mum is significantly happier at home, and at times I have wondered if she is better off at all. She has had lots of moments where she is calm, engaged and content. However, just as often she has been agitated, fearful and sad.

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Eating ice cream never fails!

Notably, some things that were previously guaranteed to work, haven’t worked. For example, we have had to leave early from Singing for the Brain, an activity she normally enjoys. Some seaside and country walks have failed to calm her, as they did when she lived at the care home. Ice cream still works though!

The one-to-one attention she has had from some carers who have come in to relieve me has unnerved her at times. Their job is to engage her and keep her safe, but some carers have drained her with the need to make conversation, and she has been keen to get away from them. Mum has seen too many new faces over the six weeks, and she has felt overwhelmed. Even though she is now living back in her old house, mum still wants to go ‘home’ occasionally, though not as often as before.

Nevertheless, there have been some encouraging signs.

Subtle signs that mum is calmer

  • At home, mum rarely looks for her handbag or counts her money as she used to. She is relaxed about leaving home without her bag; in stark contrast to how she was in the care home.
  • Mum can once again focus on, and enjoy nature documentaries, like David Attenborough’s ‘Life of Birds’. She exclaims with joy and amazement at facts and the unbelievable filming, something that was completely lost to her at the care home.
  • She is relearning some tasks thanks to well-trained carers from the social services Bridgeway team. Some mornings mum washes and changes unaided.
  • Mum now never experiences the despair of feeling locked in, a frequent source of distress at the care home.
  • Mum’s normal speech seems to have returned. She is more articulate and fluent, but this may fluctuate.

Can I cope with caring for mum?

So my mum seems a bit calmer, but what about me? At times caring for mum has been even more challenging than I imagined. The two big issues have been 1) not getting enough sleep and 2) not getting enough time to do the things that keep me sane and healthy. Apart from maintaining my health, I also want to be able to see my husband, stay in touch with friends, and make some modest progress toward work and life goals. The longest break I had over the six weeks was four hours when my sister took mum out one Sunday. During one of my two-hour breaks, I started to do some yoga and fell asleep on the mat!

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Mum naps amidst the washing following a night in which she got up 16 times.

The last two nights before mum went back to the care home were particularly difficult. On the penultimate night mum got up 17 times, breaking her previous record. After another long day caring for her I had hoped to have some time to prepare for my upcoming course.

Having gone through the evening rituals and settled mum down, I was dismayed that she kept getting up, and was worried what this meant for the night ahead. Sensing my frustration mum insisted she couldn’t sleep because Haydn (her husband) wasn’t home. Losing the plot, I heard myself saying appalling things like, “Don’t be so ridiculous!” I was only too aware that my behaviour was contributing to her agitation and keeping her awake, but I couldn’t stop myself. Surprisingly, mum remained outwardly calm throughout my outbursts. When I apologised for the umpteenth time, she told me I would have to square things with God.

The decision: Mum to stay at home

So, based on my two tests the logical decision should be that mum stays in the care home. However, although mum is not significantly happier at home, I believe she is better off, and that things will improve.

Also, I am now confident I will get in place all the support I need. Nobody can work 14 hour shifts and be on call throughout the night, seven days a week, and expect to be supportive and effective.

I will have two days off a week and will continue to get two hours off the remaining five days. I have three evenings to myself and will have a carer here for two whole nights, so I can sleep through. Amazingly, social services are helping me with much of this respite. They will also support me to have up to six weeks off a year, so I can go home, attend courses and have holidays with Jack.

Even though things aren’t as clear cut as I had hoped, I am simply not happy to return to the status quo. Things will get better, or we’ll have to find a different solution.

PS. I am conscious that my accounts since mum came home have been overly negative. Next time I will write about the many things that have worked.

16 thoughts on “Decision Time: Does Mum Stay Home?

    1. Thank you. Yes, I guess that’s what I am doing. Exploring what feels right for me, while keeping a safety net – the room in the care home. Now that I am clearer about what looking after mum entails, I feel I don’t need the safety net. I do need lots of support, but am now confident I will get it.

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  1. My only comment is that your blog has been balanced and fair and not “negative”. Looking after your mum is tough and that is a fact – but there are plenty of positives that shine through, not the least your humanity and your logical and clear thinking. I am nothing but impressed.

    All the best.

    Hugh

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  2. I don’t think this account is at all negative, I think you’ve managed to be very balanced and have obviously spent much time considering not only what’s best but also how to make relevant changes.
    I’m glad you had a holiday with your husband Jack, and managed to attend the course. You have found lots of comprises and potential solutions, and I really hope they work out. If they don’t, then I think you can honestly say that you have given it your very best shot. xxx

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  3. You have been doing an amazing job with very little support, so any “negative” thoughts are entirely understandable – you wouldn’t be human without them.

    I’m glad to hear you are now getting more support in place, that really is vital for your health and your sanity. Any carer needs time out to be someone other than a carer, with separate friends, interests and activities. Hopefully that will give you the right balance between looking after your Mum and being you. Well done and good luck!

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    1. You are clearly on a similar path, so you understand the critical role of support. Looking after someone with physical disabilities 24/7 is likely to be extremely demanding, but caring for someone with cognitive impairment, significant and fluctuating memory loss, confusion and mental health issues directly related to their insight into their condition can be emotionally draining for sure. Thanks for reading, and for your support. Good luck to you too. x

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  4. Again I just wanted to echo many of the comments here – your account is not negative. These things need to be said. If you pretended that the whole business was glorious and fulfilling every day of the week and that you were a saint (which you probably are by the way) then who would you be helping? Not yourself because you need to offload the truth every now and again – like therapy, and not me the reader who needs to know that other people find it tough. You’re doing a cracking job and talking us through some of your more difficult decisions and thought processes is incredibly helpful so big cheers all round!

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    1. Dear ‘mumhasdementia’ Thank you so much for your thoughtful and generous comment. It is true that the process of writing helps me feel less isolated on this journey. Just being able to write about my experience as it is, what I am learning about dementia and my mum’s experience of it, helps me make sense of it. It also provides a space for more reasoned thinking and resolution, which I don’t always have while I am in the midst of it. I hope things are going well as can be hoped with your mum and family. Wishing you love and best wishes

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  5. I like how you have such reasoned explanations for and against keeping your mom at home. It is no rash decision you make. She raised an upright daughter, you can remember that in whatever decision you make in the future.

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