Since we decided to bring mum home I have experienced a wide range of strong emotions. Mostly a feeling of relief that we got the right decision and an eagerness to get started; but also occasionally, fear and foreboding about my world getting smaller and having less freedom to go back to my own home.

I am so grateful to the professionals that were present in the Best Interests meeting who had confidence that bringing mum home could work for both of us. The care home managers were the people in the room with most reservations, understandably enough. They felt mum was better off where she was, and were concerned I wouldn’t be able to cope with mum at home. Most importantly, I felt hugely grateful to Jack my husband, and Christine my sister, who had privately expressed their concerns to me, but in the meeting supported my wish to bring mum home vocally and unreservedly.

I hardly slept the night after the decision. Although relieved, the doomsayers’ words of the last couple of years came to visit me throughout the night. The doomsayers of course are professionals and family carers who are all too aware of the emotional and practical challenges of caring for someone with more advanced dementia. I should emphasise that I completely appreciate their cautionary advice, and consequently, have not taken the decision lightly.

I made the mistake of posting my decision on Alzheimers’ Society Online Forum, requesting advice and tips from other family members in a similar situation. The initial rush of responses simply urged ‘Don’t do it!’ though in rather more words.

Even now, I am conscious how emotionally frazzled and physically tired I get when mum is upset, anxious or simply feeling down for prolonged periods. And to be honest at times I do worry that I won’t be able to cope.

But that brings me back to the main reason mum is coming home. It seems that most of her distress is directly related to her being at the care home, even though the country setting is beautiful and the staff are caring. I believe simply having family around will go some way to making mum much calmer. In stark contrast to many family carers, I am in the fortunate position of being able to focus on mum for a while, without having to juggle other responsibilities.

So, my current priority is putting in place things that will support both mum and I, when she comes home. The plan involves social services, occupational therapists, health professionals, family and friends and includes:

  • Getting the house dementia-friendly and ready for mum’s return;
  • Organising a menu of meaningful activities to promote mum’s wellbeing throughout the week;
  • Having ready a set of tasks that mum can help with to promote her sense of usefulness;
  • Planning a short meditation and yoga session to try out and continually adapt to support mum’s health and wellbeing;
  • Preparing and freezing lots of healthy meals in advance to leave more time for the other stuff;
  • Recruiting dementia-trained carer/s so I can have some time off.

I will write posts on some of these topics as I prepare to bring mum home over the next month.

12 thoughts on “Bringing Mum Home: Emotions and Preparations

  1. You have obviously thought long and hard about this and have put in lots of groundwork and preparation in advance. When I read through your plan I was conscious of how carefully you have prepared and I must say when you mentioned time for yourself at the very end I felt glad you had considered that too!
    Reading how calmly you are coping, I admire your attitude, although it must also be difficult to be stepping into the unknown, I wish you much success and hope all goes well. xx

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    1. Thank you so much, yes lots of thinking and not always feeling so calm… There is the element of the unknown and also sometimes a little fearful of the known. However, I also know some things that are guaranteed to work with mum; walks, church services, being in nature, tea, ice cream and cake. So as long as I work with what I know, it should be fine. Hoping things are well with you too as I know you are in similar situation. xx

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  2. My sister and I did this! I like your plan.
    Yes, it was hard. But it was worth it. We knew what we were getting into, but of course things happened we couldn’t foresee. But that’s life, isn’t it?
    Best wishes to you in your new situation. Love is always the right response!

    Liked by 1 person

    1. What a lovely thing to say, and yes I think that is right ‘Love is always the right response!’ It means letting go of control and the known, and trusting this is the right thing to do. So nice to hear that you did it too, and although it was hard it was worth it. Thanks so much for your support. I think I might quote you on Twitter if that is OK?

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  3. Good for you!
    Chris and I are all for making decisions that are right for us, and not what is right or wrong for other people.
    My mum (with small vessel disease dementia) came to live with us after diagnosis, but it didn’t work, and she moved back home (with carers 3 times a day).
    Others saw it as a failure; we saw it as ‘we tried; it didn’t work; no matter’.
    If we don’t try we can never know what works best.
    We’re with you 👍🏻💪🏻👏🏻

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    1. Thank you Jayne. Yes, if it doesn’t work out it won’t be a failure. I know I need to do this otherwise I might always regret not doing more for my mum. Whilst I am aware of the challenges, I sometimes feel that expectations for a good quality of life post dementia diagnosis are too low, particularly in the care home setting. I am looking forward to getting mum home and you and Chris will continue to be an inspiration to me. xx

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  4. Best of luck with this. It will be best for your mum but be prepared for how emotionally draining it will be for you. Don’t be too upset if your carefully thought out plans don’t work out, dementia is so unpredictable. Just take every day as it comes. I have no doubt your mother will thrive in your home.

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    1. Thank you Malvina for your confidence and your good wishes. Yes, I’m convinced she will be happier, and the big issue is more likely to be how well I cope. And yes, you’re right on the issue of being flexible. I have developed a weekly schedule of what we might do throughout every day, to give me some structure and so that I have a plan, but I will need to continually respond to whatever mum feels like doing. If I can meditate before mum gets up that will help me to be more present with her, and know what’s best to do.

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  5. Hi Julia I tried to comment but it wouldn’t seem to let !e (or I am being a techno fob) .this post and your one from December about the mental actband least restrictive are very close to my heart as my dad wants to come home? For him though my brother and I don’t feel this is right as his is alcohol dementia and if he goes home he will drink, plus mum can’t look after him.

    You know what is right for you and your family, no-one has the right to tell you not to do it. I wish you well and hope it helps your mum.

    On Wed, 13 Jun 2018, 5:37 pm Julia’s dementia blog, wrote:

    > juliasdementiablog posted: “Since we decided to bring mum home I have > experienced a wide range of strong emotions. Mostly a feeling of relief > that we got the right decision and an eagerness to get started; but also > occasionally, fear and foreboding about my world getting smaller and” >

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    1. Hi Emma, Oh dear, I’m so sorry about the problems you experienced. I tried to respond to your comment shortly after you posted it, but alas I see my response never appeared either. There seems to be a bug in the system. I will ask my techno husband to look into it for me. Thank you for persevering.

      Yes, I agree I don’t think my decision is relevant to all situations, even if the person with dementia isn’t settling in the care home. The mental capacity act is an important safeguard for vulnerable people. However the rights of your father who is living with dementia need to be balanced with your mother’s rights as a wife and carer. I think alcohol abuse on its own is a huge challenge for loved ones to accommodate, and live with. I saw the huge toll it took on both my parents supporting my younger brother who was an alcoholic until he died at the age of 31. However difficult the decision was for your family, I am sure it is absolutely right for all of you. While your father is getting the care he needs in the care home there is still so much you can do together as a family, spending quality time together on visits or outings, and then letting the care home do the rest. There is a lot of guidance available to help you make the most out of your visits and also to help you work with the care the home to ensure they provide good quality person-centred care. I include some posts on this in my own blog, but if it would be helpful for me to put together something specific for you I would be happy to. I could even write a post for you. Just let me know.

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  6. Even if your Mum cannot express it, I’m sure she is very proud of you. You seem to have thought it through very well and you include time off for yourself which is so important. I hope it works out for all of you.

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