Alzheimer’s and living in the moment
Many of you know that my mum has Alzheimer’s. This year will be mum’s fourth year of living with me and my family and I would not have it any other way. The amount of time my mum gave me growing up is non comparable to anything. My mum had a passion for children, she was a paediatric nurse, a passion she passed on to me, a passion that all children are to be loved, a passion for children to live a childhood like no other.
These four years have been the biggest learning curve of my life, more so than anything I have ever done or gone through, especially as Alzheimer’s causes a constant decline in her behaviour and her physical movement at any given moment. Mum could speak English as her second language this is now gone, so we all speak Spanish and the children have a Spanish teacher so that they too can chat to grandma.
Alzheimer’s causes behaviours which I have no control over, behaviours that upset me as I see her confusion in the most simple everyday things. I am no longer her daughter she calls me mum, a complete flip in our relationship. I’d love my mum back right now but this is no longer a believable wish, so I’ve learnt mainly in the last few months as the decline races to its lowest to just to live in the moment.
Alzheimer’s making it easier for both of us.
I wanted to share my tips on caring for someone with Alzheimer’s, it doesn’t take away the hardship of it all but it helps my mum and it helps me too.
- Routine – The pattern of a daily routine does help, although to mum it’s a new routine everyday, I can see that on some days she has a little idea of what might come next.
In the morning on waking she has breakfast in bed – a slow start is needed you cannot rush someone with Alzheimer’s. I play Spanish music for her to listen too and we start the day going over who I am and who she is. Some days we learn how to walk again, or how to brush our teeth, every morning is different, but if I stay up beat and happy it catches on to her too.
- Photos – Have photos in A4 in their room on a wall of the people they will come in contact with mostly. Mum has our photos with our names and those of all the carers that come in when I go out on appointments.
- Journal - My mum has a collect of 4 years worth of journals, I take photos during the day and write a brief description of what we did, I print this out just on an a A4 sheet of paper.
- Music – I play heaps of music it has to be Spanish, so any time we have to go to the bathroom, have a shower, get dressed – the music keeps her happy whilst I manoeuvre her around to get dressed etc..
- Children – Mum loves Miss 15 and Mr 6 , they love to make her laugh, they put on shows for her, they draw pictures, they make her bracelets and involve her in their games. It does not matter that mum has no idea what is going on it’s the contact and the laughter that is important.
- No Corrections – Mum lives in a different world, sometimes it’s World War Two, sometimes she’s back in nursing or back at school, there is no point in correcting her, her brain cannot process this -she is happy in her world so we are happy in her world.
- Patience – A hard one to manage 24/7 but it is doable, I have adjusted in allowing time to pass at her rate, I know it will take an hour to shower and dress her, I can’t rush this so I make that hour a good hour for both of us. I take my time and sing, tell jokes, give her a massage and we pick her clothes together.
- Arts & Crafts – Stimulating all her senses, incredibly messy but creates lots of laughs. It’s almost like kinder as everything is new to mum, but I love seeing the joy in her face as she with assistance paints a cut out flower or makes hand prints with Mr 6. We also do lots of threading and make very simple jewellery.
- Favourite Things- These are mum’s favourite things they are not mine but I make what I know she likes possible. Mum is a Catholic (I’m not) I use to take her to mass because that is what she wants, now its got harder to mobilise her the Spanish priest comes to visit her. She loves Spanish music so we went and saw Julio Iglesias in concert and also the Gypsy Kings – the sheer delight whilst at the concerts I wish I could bottle up, because the next day its like it never happened hence the journals which remind her. Mum loves old movies and now I’ve sourced a a heap of Spanish ones she likes to watch and she also has a subscription to the Spanish Hello, which we read together. She loves elephants, dollies and teddies, her room is cross of the vatican anda giant cuddly toy emporium.
- Food – Fussy eater does not even cover her because what could be her favourite food one day she absolutely detests the next day, do I stress? Not anymore I offer something else and she loves MacDonald’s (yes I know its not good for you but what the hey it makes her happy) so I sneak it in to her every now and then. Some days she can use cutlery other days I feed her.
- Practicalities – alongside her photo journal, I keep a daily journal of what she eats, her medication, moods, toilet trips and naps. This helps the carers that come in keep up to date on her daily activities. Her room is like something out of Mission Impossible, there are infra red lights which sound an alarm if she manages to get out of bed and a camera which are all monitored so I can get to her during the night when she wakes.
- Dignity & Grooming – My mum was always very glamorous, loved to dress up, put on her lipstick and paint her nails and attend any party at any time. Her hair is done at home by a Spanish carer who was a hairdresser, so she gets cut and colour every six weeks, we manicure and paint her nails weekly and she loves her pink lipstick.
- Laughter – this is essential and as much as possible, I diffuse a lot of situations when she is getting cross with her self because she cannot explain what she wants , so I change the topic through laughter. Considering she is a staunch Catholic and had a very strict upbringing, when I say what she would consider rudish words, she bursts out laughing, so yes I swear to make her laugh – it works.
- It’s OK to Cry – this applies to both mum and me, sometimes she is upset due to the confusion or when she wakes up at night not knowing where she is or who she is and with reassuring , cuddles and soft talking she falls back to sleep. Me well I’m only human and of course it breaks my heart to see mum like she is and at times the tears flow and I’m OK with that now.
Caring for Mum with Alzheimer’s is like Parenting
By living in the moment which has taken me a while to do, I’m not as over whelmed, my list of not sweating the small stuff is much longer but the dust and laundry eventually gets done and no one else seems to care.
Just recently I’ve adjusted my priorities both with work and family life to suit me and being able to spend more time with mum, my office is now mobile to whatever room mum is in, I decline many invitations to events as care is expensive, but I’m lucky my friends are happy to come here. I do make time for hubby and my children too and will have a carer in so I can focus my energies on them too and also leave the house, which is a planning event to the highest degree.
Caring for my mother reminds me of when I first had my new born daughter, yes I should have known what to do, I read the books and worked with children , not babies though and even now I see parenting as a learning adventure and so is caring for mum. Mum is a mix of a baby, toddler and child with the odd teen mood swing – she certainly keeps me on my toes and I know that this year with the ever increasing decline will be tough for a softie like me but as long as mum keeps laughing and asking for her $5 pocket money when I’m handing out the kids pocket money I know I’ll be just OK.
If you have any tips you’d like to share about caring with some one with Alzheimer’s or dementia or any resources you would like to share do leave a comment, I would appreciate it and you may be helping someone out too.
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