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.
Every night I’m grateful she is with me and I note down any happy moments that have occured during the day, they help keep me going as do my family and friends and Eminem.
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.
Nathalie Brown
I wish we lived in the same city. I would come over and spend some time with you and your mum. I treasure the Tuesdays I used to spend with Mike’s mum and now that she is gone, I’m so glad I had that opportunity. I know how hard it is for you, but I also know that you wouldn’t not do it. Your mum is very lucky. Much love and hugs. xxxx
Annie that means so much to me and if and when you come to Melbourne you are so very welcome here xxx
You really are an inspiration Nathalie! You’ve given some great practical tips for anyone who is going through the same thing…oh, and I agree, laughter generally works a treat in most situations, well, that, and MacDonalds 😉 bx
Lovely Bernie you don’t realise how inspring you are to me with your funny tweets that really bring me up when I’m feeling down. Don’t forget to email me your number xx
My Mum had Alzheimers also. It imprisoned her for 11 years. I have also worked in a nursing home with Alzheimers and Dementia residents. I remember all the happy, funny moments, of which there were many and which far outweigh the sad moments. This is a wonderful story that a lot of people will find helpful and uplifting. Thank you for sharing this and giving your Mum such a lovely life.
Lesley many thanks for your kind words, I take my hat off to anyone who works in nursing and care – you touch and change people’s life’s so profoundly that there are no words to thank you enough xx
Thanks so much for sharing your’s and your mum’s journey through such a dreadful disease. You are a totally amazing daughter, I take my hat off to you! And wish you both all the best…
Jo, I don’t feel amazing but thankyou it feels lovely to be called something nice. Thanks for reading Nx
You are such an inspiration, Nathalie. Being a parent to a newborn is hard work and when your patience is tested it’s hard to stay positive. I love how you’re able to grasp hold of the good things in life.
How wonderful that the Spanish priest visits. That is so wonderful. x
Kellie too kind, I’m just normal and try my best as a fumble along on certain days. Yes it’s fab having the priest come here, I think I have managed to source everything and everyone Spanish in Melbourne to keep mum happy x
I know that most of us just ‘dea’l with the challenges life throws our way, but some people manage to go just that little bit further. You are one of those people Nat.
That one phone call we shared helped change a visit with my nana from something I was dreading to something I can now cherish. Thank you x
Kirri i think you mean You are one of those people, it wasa pleasure chatting to you and so pleased that the visits are now a little better xx
I managed to get about halfway through your article without crying, which wasn’t too bad. Mum has dementia and I had to find a Aged Care Facility a year ago for her. Her decline has included violent outbursts which the facility is now regulating with medication. I wish we could have her with us, as the guilt is almost as bad as having kids at childcare, but for the sake of my family AND my marriage, it just can’t be. Her decline was so rapid almost by the time they diagnosed the dementia should couldn’t remember to eat or shower – or that she had to. I take my hat off to you and that you’ve managed to do so much. I’m glad you find the time for a good cry sometimes because you need that release. Good luck and I hope you all have a wonderful 2012.
Joanne I am very lucky that at this stage mum doesn’t have violent outbursts, the Professor who sees her cannot believe how non aggressive she is so I am grateful for that. Please I know it’s hard but try and lessen your guilt, you have made the right choice for you and your family. I’m so sorry your mother deteriorated so fast that’s devastating and I can’t offer much advice but send you virtual hugs being a daughter is also hard work xx
Your post was so beautifully written, it brought a tear to my eye.
Thank you for reminding us of the important and not so important things in life.
Give your mum an extra cuddle 🙂
x
Alawys giving mum random cuddles and kisses a great diffuser of her panic situations. Thanks for reading Love Nx
you are a real gem, I wish I had your determination and courage maybe my dad would still be with us 🙁 ,my dad passed away Xmas morning from dementia I know exactly what you are going through dad lived with me for 10 months whilst he was unwell,but because I had a 10 month old baby I was struggling to make time for all of us.I loved my dad so much he raised me and 5 others on his own he was an amazing man that had a hard life and til the day he passed he was in pain,now I know he’s in peace.Your an inspiration to all
Milly you did a great thing to care for your dad and a baby it must of been really hard for you, like you say he is now free from the pain and confusion and he will alwys live through you and your kind words about him. Big Hugs Nx
I don’t have anything very profound to offer except that you are a beautiful and devoted daughter which obviously was a gift from your equally beautiful and devoted mum and a testament to the way she has lived her life. Xx
Martine thanks for your lovely words, Mum certainly was one for helping everyone and now its her turn to be looked after xx
Oh Nat! You amaze and inspire me with your level of patience and love. My own mum is currently being tested. So far, she is okay but my brother and I are concerned. She is fine in her own environment but take her anywhere new and she is like a child with very little idea of how to cope. She is also struggling badly with her day to day memory and can sometimes forget things that happened 2 hours before. Very worrying. She is in total denial and thinks the Drs will be able to give her something to ‘fix’ her memory. Gee I hope she’s right and we’re wrong! I hope dearly that if we are going down this path I can handle things with the same sense of love and patience you are. I’ll be chasing you down for advice 🙂
I’m actually going to try to comment anon. because I’m not really ready to put this out there yet, as you’d probably understand, it’s bringing up loads of emotional debris for me to deal with too.
Thanks for sharing this.
If you need to talk you know my email just drop me a line and I’d be happy to help. So sorry to hear about your mum, there is medication that slows down the process to a certain stage. Sending you giant hugs and do plaese get in touch if you like Nx
Nat you are such an inspiration. You juggle so much, and you do it with love and patience that many people cannot manage juggling a lot less.
I love your approach to your mum. I’m sure it helps reduce the frustration you that you must feel some days.
Does she ever have days that she remembers you, where she is, and the kids?
Gorgous thanks for your lovely words, unfortunately mum doesn’t remember where she is or who I am, she just knows me as her mum now and as a constant in her life, so she can sort of recognise my face and voice but every morning I have to explain who I am xx Thanks for the share on FB too x
A beautiful, honest and accurate blog. I have so much admiration for people like you and my mum (who is in a similar situation with my dad). Sadly it’s a disease that doesn’t just affect the patient, but everyone they’re close to.
Thanks Andy yes it affects us all and I’m always very aware that my children see their grandma as she is but they have been absolute gems with her and me. Thanks for The RT too. Nx
For as long as I can recall, my mother has worked in aged care facilities, from personal care to now running activities.
My siblings & I have gone from growing up around dementia residents to now taking our own children in to visit. You can never under-estimate the profound effect children have on people suffering from Alzheimer’s and vice versa.
You really are an inspiration Nathalie. I don’t pretend to understand the difficult times you must go through but you are to be commended for all that you do. Unfortunately many of the residents at Mum’s work have nobody.
If anyone is interested in the types of activities my mother runs to stimulate memory for those suffering dementia & Alzheimer’s I’m more than happy to speak to her 🙂
Carli thanks for your comment, I would love to know about more activities to do with mum, even if it’s just for fun as her memory is really beyond learning. Anything we can do together would be fab. Thank you so much Nx
I will have a chat with her and email it through, many of the activities are reminiscence based & I know they do something called armchair travel – which could be a bit of fun.
thank you xx
Hello Nat
I am lost for words for the entirety and endearing way you look after your mother.
I have a very close girlfriend that has a mother with dementia and has seen her slip away to a land that is now unrecognisable.
I wish for angel wings to always be around you to assist you and help you both physically and emotionally.
You are an angel yourself
loulou, from hereiamloulou blog
x
Angel wings sound good , Thank you for your beautiful comment x
What a wonderful daughter you are to your dear mum. My dad has just been diagnosed with Alzheimers and also Parkinsons. He has been so strong and so independent, and to see him failing now is heartbreaking. He is 79. Thank you for writing this post. xx
My mum is 79 too and it is hard to see them disappear in front of your eyes, sending you big hugs and thankyou for reading Nx
You continue to inspire me Nathalie. I hope this year you feel the love and support that everyone out here in the virtual world sends you each and every day.
It amazes me how sunny and positive your outlook is (although I know you feel flat and overwhelmed at times too – you are human afterall).
Stay strong, and continue to love your mum in the most amazing and available way you can.
Sooz xxxx
You are such a beutiful person and thank you for always taking the time to comment xx
Enzo’s paternal grandfather had dementia. He was eventually placed in a nursing home with his wife (Enzo’s grandmother). I just asked Enzo how it was with this grandfather and he just told me that there were days when he would show no emotion but on some days he would just smile – and that make Enzo’s dad happy because at least he was registering something that made him happy even if no-one knew what it was. The power of a smile.
You are an amazing woman Nathalie. I honestly don’t know if I could rise to the occasion if either of my parents developed alzheimer’s. The switch between parent and carer must be difficult. But you can’t have your time over again so I suppose you have to do what you have to do. No regrets.
Love & stuff
Mrs M
Maria Thanks for this beautiful comment, with mum its her smile that gets me through most days at the moment. I really don’t feel amazing just me xx
Reading this cements my thoughts that Boo is so very much like your mum. When he was little and I was offered SO MUCH respite I had no idea why people would offer it to me. But when he never progressed emotionally from the age of 4 NOW I understand.
I love your attitude. It is similar to mine, pick your battles Maccas and Spanish music is a tiny price for so much joy.
Love you sweetie. x
Kelley I sit here with tears streamimng down my face trying to keep it together and that’s just reading your comment, I’m so pleased to hear we have a similar attitude that has made my very hard day with mum a lot more bearable , Loving you right back Nx
Such an amazing article. My grandma has dementia. She forgets her mothered died 20 years ago and my grandad, her husband 1 year ago. Also, because this is not her place of birth, she constantly wantshone’Ime unbeknown to her, she hasn’t lived there for over 50years. It’s so sad to see a woman that was so strong become so dependant. We have a very large family so we all do what we can. Our grandma pretty much brought us all up. So sad. Alzheimer’s and Dementia are horrible things, to live in a constant state of confusion. I just pray for her happiness and safety.
Thank you for sharing your experience, it is very tough but the moment she smiles and laughs is all worth it xx
Your article made me cry but inspired me. I felt a bit guilty about the complaining I do – as I have nothing to complain about. It reminds me to appreciate more what i have. You are amazing! Thankyou. 🙂
Debbie I just sort of wing it everyday, some are good some are shockers but it is amazing how resilient we can be x
My name is Bakhus, I have learned to let go and enjoy my time with my mom, after placing my mom in long term care and after taking care of her for 7 yrs, Wrote a song about it after placing at the full care home, if you’d like to listen here’s the link to the Canadian Alzheimer’s site
http://www.alzheimer.ca/en/Get-involved/Share-your-experience/Creative-Space/Writing-room/Still-a-child
Still a Child
If you knew what I was going through,
You’d approve of what I had to do.
Putting you away for the rest of your days,
Plays on my heart and it tears me apart
I walk away with you on my mind,
It’s killing me to leave you behind.
You’re begging me to take you home,
But I feel so guilty because I leave alone.
Chorus
Cause I’m still a child when I look in your eyes.
And it make me cry and it make me cry
Now every hello feels like I’m saying goodbye
Goodbye good bye good bye
If I could have you back for one more day.
Would you reassure me what I’m doing is okay
Would you comfort me and ease my mind,
Cause only you can help me find my way
Wow Bakhus, you have a great voice, as you can imagine I have tears streaming down my face as I listened to your song – you sum up how I feel. Thank you for sharing your voice. Nxx
My Dad died two years ago but really, the man I knew died many years before that. Dementia robbed him of not only his memories but his personality, his freedom and his ability to love. To be honest with you…I began reading your article but the pain of my Dad’s suffering, his family’s, friends and mine all came flooding back …and I couldnt finish reading it. I do want to but it’s not going to happen tonight….I will try again another day. Strength and understanding to all those affected by Alzheimers and other forms of dementia…
Oh Carmel it is so very tough I’ve cared for mum for four years and now she can just about talk, she’s not walking and I just take each hour as it comes. Big hugs to you your dad will always live through you and the beautiful memories before the dementia xx
My mum works in a retirement village, for our teenage year my brother and I both basically grew up there. What you are doing take tremendous strength, compassion and love. I commend you as many can't offer this level of care to their loved ones. I loved painting the ladies nails and it is something that they truely do get delight out of. Every day you can do this praise yourself because you truly deserve it and should the day come when you can't celebrate every day you were able to because you and your family every day are doing something amazing. x
Shallon thankyou so much for your heartfelt comment, mum still loves having her nails painted, I always do them for the weekend for her. Yes it’s tough but I am managing day by day Nx
Natalie I am in awe of your selflessness and unconditional love for your mum shines through. Many of the things you state above we did for my Nan before she passed. I love your journal idea – we did that too – for me they are now a beautiful memory of words and photographs.
It’s a rocky ride but I’m getting use to it xx
What a wonderful life you are giving your Mum
My mother in law passed away from alzhiemers a couple of years ago, it was so sad to see the Center of the family fade before our eyes.
A friend lent me a book called “Still Alice” it is written from the perspective of the alzheimers patient. It took six months for me to pick up the book – it was a beautifully story full of some of the early symptoms that we all missed with my MIL. I wish we had known earlier so we could have got her a nicer nursing home when she needed the 24 hour care. Not just the only one in the area with a bed.
Suzy it is hard but when she laughs it makes it all worthwhile. I have the book “Still Alice” and She is still my mum. Nx
This is my reality. I don’t like it, it breaks my heart, but it spurs me into more action. My mother will rapidly decline, I know that.
Going to read your whole series, so glad i’ve found you.
Dear Alexandra my heart goes out to you, if you need any further info you are most welcome to email me xx