Mum’s first week back at home has not been easy for her or me. Before mum came home, I was aware I hadn’t put into place all my pre-homecoming plans. I made progress on lots of things, but didn’t get completely up to date with tax and admin, or pre-cooked all the healthy meals I’d planned. I hadn’t read all the dementia care books I’d bought, or created mum’s meditation and yoga plan, which I was most excited about. And I had hoped to write blog posts about the preparations that I had managed, for example how I:

  • created a dementia-friendly home. This involved many trips to charity shops and the tip to clear lots of space, and remove obstacles from rooms, hallways and the staircase.
  • produced my own homemade signs to signal key rooms such as toilets, and the contents of drawers and wardrobes (see featured image).
  • created a comfortable bird-friendly garden and secure outdoor space that mum could walk out to on her own, andGarden
  • attended two dementia care training days (run by the amazing Teepa Snow).

I decided I would have to do some of the remaining things when I got breaks. Yes, ‘breaks’! What was I thinking? When mum has short naps that’s my time for washing, cleaning, preparing food – there really aren’t many actual breaks. Although I was aware that I need carers to give me respite, my last blog post titled Maintaining Routines seems painfully naive now.

Getting reacquainted with mum’s home

The few times I have brought mum to her own home over the last two and a half years, she seemed instantly comfortable. I brought her back several times in the run up to her homecoming, and again she seemed quite at home. What I didn’t appreciate was how confusing a move for someone with dementia would be. I knew that you shouldn’t move someone living with dementia unnecessarily, as it can be very disorientating.

What made things worse was that while mum didn’t recognise the house as somewhere she had lived, she recognised many things in it. This was extremely disconcerting for her. She kept asking questions about whose house it was and why we were staying here. Mostly she thought it was a palace that her family could never have afforded, and at other times she thought it was shabby, tired and in desperate need of updating, depending I guess, where she was in her past at that particular moment. The whole experience of the move has accentuated her knowledge that huge gaps of her past are gone, a void where memories used to be. She eloquently highlighted this when she said, “I don’t know if I’m in the present, the future or the past. It’s all the same.” Mum then asked, “I don’t suppose my parents are still alive?” as she does often. She has spent significant parts of each day distraught.

On Monday, when we returned from Singing for the Brain, she absolutely knew this was her old home. It set off a desperate series of questions that she urgently needed answers to. As I struggled to find reassuring responses, she became more distraught. I asked what she was most worried about, and she explained it was about being on her own and having to make decisions. Although visibly relieved by my reassurances, they came too late. Mum remained completely miserable the rest of the afternoon. Several times I had to leave the room, as my compassion was running thin, and I was just making things worse. A walk by the beach, and a drink in the sun at the local pub, failed to raise her spirits. She had taken umbrage, though she had no idea what about.

The move seems to have unsettled her more than I anticipated, and has heightened her awareness of her condition.

Sleeping

Mum is very unsteady on her feet during the night, so I need to support her to go to the toilet and back to her bed. A sensor alerts me that mum is out of bed. As she had a very bad fall in the care home, I’ve been jumping out of bed in a panic to get to her before she stumbles. This week mum has been up between four and five times most nights. She goes back to sleep instantly thanks to her sleeping tablets, but I don’t. Having triggered my fight or flight mechanism that kept my ancestors alive, I have found it difficult to get back to sleep. So, I have been – and am – very tired indeed.

Support for mum and me

I had failed to find private carers but was optimistic that mum’s support from social services would give me some respite, as I described in my last post.

Unfortunately, the social services carer visits are not particularly useful to mum or me, so I have cancelled all but the morning call. The lovely carers arrive to help with specific tasks like supporting her to get washed and ready for the day and prompting medication. Sounds great, but mum starts getting herself ready the moment she gets up at 6am, only to have someone turn up at 8.30am to encourage her to start again (this time though with a proper wash). They arrive a couple of times in the day, and again in the evening to help her get ready for bed at 7pm! Apart from the morning call, these visits were just agitating mum.

Fortunately, I managed to get a private carer in three nights a week, so I can get to my badminton two nights, and have three hours on Saturday night to do whatever I like. Last Saturday, I wanted to lay low in the house and just rest, but mum wouldn’t leave me alone. So, I decided to cycle to a local Indian restaurant where I would eat and read. It was a nice cycle ride, but after waiting half an hour the manager told me it would be at least another hour before there would be a table for me. I cycled home and had mum’s dinner, which she hadn’t wanted, with a glass of wine. Mum started clearing up around me and went to remove the wine. I told her wearily I wasn’t finished with it, and she told me not to drink too much. I reminded her of my age, and she reminded me it was her home!

My priority now is to get additional support for me, so I can maintain more of the routines that nurture me: my sleep, meditation practice and yoga! Delighted that I have three nights off, but I will need much more than that, if this is to work.

13 thoughts on “Mum’s First Week Back at Home

  1. Hi Julia
    I sympathise with the ‘not being able to get suitable carers at appropriate times’. I find I am better to undertake personal care tasks because they need to be done at the time my husband is ready for them. I have carers at other set times which allow me to swim, attend pilates, meet a friend for coffee.

    Like

    1. Yes, that is a sensible approach Christine. It is better now that only one carer calls a day. I am able to help mum with most things but I am glad to have someone else do the personal care and hygiene in the morning. Mum seems quite receptive to washing and changing twice. I hope to get more carers to sit with mum while I do things for me. I had a meeting with a woman from social services yesterday, and she is going to talk to her manager about me possibly having 2 hours a day. Mum will pay for this, but the two huge benefits of going via social services is that their requests are prioritised by the care agencies, and there is a cap on what you pay in Wales, thanks to Rhodri Morgan (I understand).

      Like

  2. I’m sorry it’s been so hard. Your experience highlights the difficulty of responding to a person with dementia who doesn’t recognise her own house as ‘home’ (that should be a place where everything feels right and makes sense, except that it clearly doesn’t) because whatever you say to her is likely to be ‘wrong’. If it’s not home, what are her belongings doing here and if it is, why does it all feel so alien? You do need support, but it needs to be the right sort, that isn’t task-orientated and understands when it might be better to leave the ‘proper wash’ for another time. If you do move her to your house, it will be yet another upheaval (so you may want to give her a bit longer in case she starts to settle where she is now), and she may not feel any more ‘at home’ at your house, but at least you won’t expect her to in the same way, and she can then start to look forward to ‘going home’ (in an unspecified sense) at some future unspecified time. Best wishes x

    Like

    1. Hi Shirley It’s not been helped by the fact I started feeling a little under par with a cold the day before mum came home. Still a bit achy as a result of that, and I fear mum has caught whatever I had, as today she is really lethargic and talked of aches and pains. However she does seem more settled last couple of days, and it is striking how her speech seems to have recovered since day one. Less problems with everyday conversation, she is no longer looking desperately for her handbag, or counting the money in her purse, or trying to find the way out as she did in the care home. At some level I think she feels more comfortable. Perhaps with increased insight and more knowledge of her condition.

      I am not planning to take her to my home in Brighton. My lovely husband, Jack, who is very supportive, made it clear that would be one step too far. Now that she is at her own home, I completely understand and don’t think I would like that either. Too stressful. If at some future date she comes to Brighton it will be to move into a care home there. For now, all options are open. Perhaps if this works back at her own home we can get 24 hour care to keep here and I can come to visit. We’ll see. Thanks as ever for your considered and informed comments. J x

      Like

    1. Yes, tough but I think things are beginning to settle down now. Yes, I do know Unforgettable. I think it is an amazing website and you have reminded me I should go and see what they may have that might help mum and I. J x

      Like

  3. I am always concerned reading your website of unrealistc expectations and a sense that you feel you are failing because of that. There is no magic wand. The move was always going to be difficult. Accept that. As your mother’s conditions worsens, it will be harder to assure her. Accept that. Get a carer. Accept that. Understand the need for personal time without guilt.

    And most importantly. Accept dementia is what it is. A nasty disease which strips a person of their personality and dignity over time and all a person can do is attempt to mitigate this with compassion and humanity.

    By any measure, you are doing a fu#king amazing job and just because the disease means you become less effective or the ectra stress means more breaks doesn’t change this fact.

    Like

    1. Hugh, you have been here and are still doing an amazing job supporting your mum, so it must be a little frustrating to see me learning everything afresh. It’s true I’m still a bit of a newbie on this journey, and perhaps overly optimistic. I did, and do, expect the first few weeks to be difficult so am not too worried, yet. Yes, I agree accepting that mum will be distressed in spite of everything I do will make it easier. If I can hold back from getting emotionally involved when she is distressed, it will be better for her and me. Otherwise I start feeling under appreciated and that’s not good for anybody. I still believe I can make things better for her, and still hope to give it my best shot. There is a lot of great training and advice that I am benefitting from. I still hope to learn something that might be useful for other people; optimism is in my nature. Meanwhile, thanks for your words of (frustrated) encouragement and I do hope all is well for you, your family and mother. Stay in touch, I do love hearing from you. J x

      Like

  4. Julia, you are doing an amazing job, the negative feelings are just a reminder that you are on a steep learning curve. You are doing a wonderful thing for your mother and in time you will both find a mutually agreeable path where BOTH your needs are met, as Hugh said you ” need personal time without guilt”

    Liked by 1 person

  5. I’m sorry that it has been such an exhausting start and that you’ve had so little time for yourself.
    Reading through it though, you have already achieved so much, planning the dementia friendly environment and modifying carer visits to name just two.
    I hope that you find a way to make time for yourself, it seems that it’s the one thing that hasn’t been possible but must be desperately needed.
    Thinking of you and hoping things go well.
    Sally xxx

    Liked by 1 person

Leave a Reply to samanthareddin Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s