Parenting: Alzheimer’s and my children “I don’t want granny to die”

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Parenting: Alzheimers and my children “I don’t want granny to die”

Alzheimer's memories fadeWhen my seven year old son looks at me with  pockets of tears welling in his blue eyes and whispers in a broken voice as he tries to keep himself from crying uncontrollably “Mummy I don’t want granny to die” I hug him. I hug him so very tight, kiss his forehead and  breathe my words out softly back “I don’t want granny to die either”.

Four years ago my mother who was at the initial stages of Alzheimer’s my mother moved from the UK, where she had lived for forty years  to come and live with my family. My son had just turned three and my daughter was twelve. My mother is now in the final stage of Alzheimer’s, the UK no longer exists, English her second language no longer exists and myself her eldest daughter, no longer exists. My mother has no idea who anyone is, who she is or where she is. Everything you could possibly imagine from eating, to getting dressed is a new experience everyday, even waking up in the morning is a scary start for mum. A baby learns through routine, communication  and love, my mother is comparable to a baby but a baby that does not learn.

Being angry does nothing, crying does nothing, worrying does nothing, only living in the moment, hour by hour is the only way my family gets through, it is the only way we live, it is the only way that works for us. We know that if we make plans; appointments, work, catching up with friends, grocery shopping, a day out with the children, a date for my husband and me and even my sons’ 7th birthday, all cancelled in a second. Plans change, we move on, we continue the best we can, we laugh, we cry and we hug a lot.

 Alzheimer’s is Teaching my Children Life Skills

A big part of my life is child behaviour it is my work , my studies and my research. I have been on high alert observing my own children and very aware of how having my mother with us 24/7  has impacted on their lives, their behaviour and them growing up. Growing up with most recently a daily unknown of will grandma be OK and here tomorrow. Both my children  have seen my tears, my anger and my exhaustion. My daughter and my son have a love and care for grandma well beyond their years. They have the patience to involve her in games, they love to see her laugh and will dance, sing and pull funny faces until grandma smiles. Spanish is what grandma speaks and even her speech is  slowly disappearing, yet my children try their hardest to talk to grandma in Spanish, which again makes her smile. When grandma smiles we all smile.

So what are life skills? I know  that life skills are not grades at school or exams, not how many friends you have, not how many new fangled toys you have or how well you play a sport.

To me life skills are intrinsically tied into the way you see the world through your understanding of other people that come into your life. Not just friends and family but anyone you come in contact with. Life skills give you the tools to have a comprehension of yourself in relation to what is going on around you.

  • Patience “Learning to wait happily” When I am busy with my mother and my children need me for help with homework, to ask a question, to go out, to start a game. They both know I will be with them as soon as I can. Many a time between themselves  whilst waiting for me they have found their own solution. Patience is a skill we all need more of and learning to wait for certain things in our very fast paced world is important.
  • Disappointment “It’s OK to feel let down” This is a major area that many a times a get consumed with guilt. I have learnt never to promise but to say “Let’s try”. Of course Mr 7 was disappointed, I was not here for his Birthday and I reassured him and validated everything he felt. Followed by a Birthday Party the following week. We cannot always be in a constant happy, life will throw us disappointments when we are let down or we feel upset. It is normal to feel these emotions. Children will face disappointment now and as adults it is OK, allow them to feel the disappointment. “I understand you feel disappointed I would too” it builds resilience a quality we need very much in the adult world.
  • Compassion “Concern for others” They both rock at being compassionate and I thank mum for this amazing quality. Compassion can be hard to teach, only by living and role modelling can this life skill be truly taught. The times they have told me to sit down and relax whilst they entertain granny and make me of cup of tea in the evening, makes me so very proud.
  • Reasoning “Thinking and working things out” We do not have much spontaneity outside the home. My children understand they can not plan anything in the now, as in at school pick up and wanting to go to a friends’ house or having a friend over impromptu. They both come home with requests and I check my calender and then I arrange appropriate care for mum. Miss 16 will  herself arrange to be picked up and brought home, so that I do not have to book a carer in. They think before agreeing to anything and have practically worked out the arrangement themselves. Children are fab at working things out if given a chance. Yes it takes them longer but it is a life skill they will need more and more as they grow up.
  •  Sense of Justice “Knowing right from wrong” This is of paramount importance to me. With Alzheimer’s mum has no idea what is right or what is wrong, she can get angry for no reason and laugh and point as she has no real conscience left (Mum had a very strong sense of justice prior to Alzheimer’s). Miss 16 and Mr 7 if we are ever out with granny will distract her from pointing.
  • Acceptance “Accepting themselves, accepting others and accepting out current situation.” We sit and talk a lot, I feel my children need to hear sometimes more about life than they need too. I keep it developmentally age appropriate. We talk about being happy with who we are, accepting the differences of others and making the best of what we have. We have so much to be grateful for, that it can get lost on the days when mum is not very well.
  • Unconditional Love “To love with no conditions or circumstances: to love completely” I do not love my mother any less because she has Alzheimer’s, I feel I love her  even more if that is possible. My children do not love me any less because I am busy with mum, we really treasure the time we do get together, we laugh, we read, we talk and we love. A love which is based on conditions is not really love but a set of rules to abide to.
  • “Routine and Flexibility” Children thrive on routine but flexibility is necessary too” We have family routines, we try and have dinner together every night, the children have their Taekwondo and hockey to attend to and Mr 7 is read a story every night. These have also been subject to change at the last minute. Teaching flexibility happens on the spot, again validate how they feel and reschedule the plan activity or replace with something which you can do together.

Alzheimer’s: Explaining Life & Death

The tears from me on this are enough and they still keep coming. They creep up on me even on my stronger days. Dashing around the supermarket one minute I am OK the next minute I feel them on my face, no warning they are just there. I accept them wipe my nose and face on a tissue if I have one or whatever is in my bag. I fully appreciate there are families with a lot more on their plate and very different and difficult life situations. I know this through work, through my own life experiences and reading about other peoples lives when they blog. It does not make my life easier but it gives me a deeper perspective,  a lot of understanding and the strength to continue, as I count myself extremely fortunate for the family I do have.

With my son we talk about invisible love a love that will always be there no matter what. I explain my father passed away and a lot of what I say and do I learnt from his grandfather he lives on through me, he will aways be my invisible love.  My father never met my little man, he would have loved him. My son likes to say granddad is in heaven, he could say granddad is on the moon or Mars, if  Mr 7 wants  a place for his granddad, well I am fine with that. We talk about how happy granny is when both of them make her laugh, and all the wonderful memories we create daily for her, she may not know who they are anymore but they are a strong connecting foundation to her happiness.

My children worry that I will get Alzheimer’s and I will forget who they are, so I have a tattoo that I hope will be a trigger to me if I ever do end up with it. I write in a journal and add photos and lots of points to refresh my memory if I ever lose it.

As a family as every family we have our good and bad days but we each take it upon ourselves to shift the bad as soon as we can because we do not know what tomorrow or later in the day will hold for grandma.

Life is for living to the best of all our abilities each day and children are great at this. They live in the moment very much so, even with just a leaf. Death is inevitable and making the most of our moments together to create the memories is how we get by. Some nights Mr 7 has nightmares about death he climbs into our bed. Do I send him back to his bed in case he forms a routine out of it ? Hell no, I keep him cuddled up next to me, he needs the closeness and so do I.

My parenting style is one that has to suits me and my children it can change daily the only consistency being my unconditional love. My mother is not my mother anymore we all mother her now. We live day by day, moment by moment  and on Saturday my mum was well enough to come out for a family dinner, that made my month, the simple things become my happy. We get out of the house as a family and enjoy every single moment, the taxi was two hours late in picking us up normally I would rant and rave, we held a spontaneous disco at home before going out,  we are all learning to adapt and not stress the small stuff…. I have a lot of small stuff and right now that is OK.

 

We were all recently interviewed By The Age “Keeping it in the Family”

What areas of your life do you struggle with, are they life lessons in there too? You can leave a comment they make me smile:)  just keep scrolling down below ….

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Nathalie Brown

Child Behaviour Consultant at Easy Peasy Kids
Child Behaviourist and researcher. Creator of "Less tantrums. More smiles". I look at the bigger picture and think outside the box when working with children and their behaviour. Their world is different. As adults we sometimes forget this. Happiness Creator in my spare time. Eater of chocolate and cake.

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Comments

  1. Big hugs to you and all your family. You are a remarkable person, and so are your children. Sooz. xxx

  2. I just finished typing a post I will probably never publish, whinging about all that is getting me down in life. Then I read this and I’m reminded that sure my life is not perfect, crap is going to get me down, but I have a hell of a lot to be grateful for. Alezheimers would have to be up there as one of the most heart breaking conditions. I like your attitude one day at a time, I admire your strength, even if sometimes you don’t feel strong.

    • Mandy, whatever you call it whinging or venting its still ok to publish, we all have stuff that gets us down.Somedays the smallest thing will annoy me, the following week it will be something else or it just won’t matter anymore on the scale of things. Big hugs Nx

  3. Catherine says:

    A beautiful and sad post. Brought tears to my eyes, sad tears because I understand your pain at watching a once vibrant spirit slowly fade and tears of admiration at your two incredible children and your beautiful family unit. Thank you for sharing another inspiring story. :)

    • Your comment summarises exaxtly how I feel ” Watching a once vibrant spirit fade” and that’s what I struggle with and how it plays on my mind daily. My family are my rock. Nx

  4. Thank you so much for this post. I was going to write about my perspective of this on my blog with dealing with it with my grandparents. It was so hard. I pray for a cure. I will be sure to link my post back to yours as you said just what needs to be said. Nicole x

    • Nicole leave the link in the comments and I’ll add it to the blog post too. It is hard I look forward to reading yours. Hugs Nx

  5. Ohhh Darlin, what a beautiful/heartbreaking post.. Gave me a little insight into your world. I am sending you big huge hugs and a thousand kisses.. XX

  6. <3

  7. Annie Pappalardo says:

    As you know I totally understand this. It is so hard, yet can be so beautiful at times – those little special moments when they smile or there is a flicker of recognition. I am in awe of you. You are an amazing lady. Your mum and your children won the jackpot with you xxxx.

  8. s you know I totally understand this. It is so hard, yet can be so beautiful at times – those little special moments when they smile or there is a flicker of recognition. I am in awe of you. You are an amazing lady. Your mum and your children won the jackpot with you xxxx PS I got all confused & shared the comment on facebook too!

    • Annie thankyou it’s the beautiful moments that keep us strong. PS I’m all confused too have no idea how to work my own blog ;)

      • Sinead says:

        Natalie, you are an inspiration! I have no experience with Alzheimers but have learnt so much from your posts. It sounds so frustrating at times but you and your children are so unselfish and any sacrifices you make now will bring you nothing but good karma xx sinead xx

  9. A powerful and beautiful post Nathalie – what a testimony to your grace and care your children are!

  10. Nathalie – your mum is so fortunate – but no doubt so much of how you care for her came from her in the first place – a beautiful circle of love. Thinking of you often x

  11. just a beautiful piece of compassionate and deep thinking writing x.

    • Libby thankyou my writing is not a strong point, I can never think of the words I want to use I write as I speak. Compassion is a daily aim I aspire too Nx

  12. Such a lovely post Nathalie. I have no words – other than to say your heart is beautiful.x

  13. Cathy says:

    What a beautiful post about such a difficult time in your life. I nursed my grandparents as they aged and died and I know all to well what it is like to be forgotten yet the person still be here. It sounds as though through your family unit you have given your mother the things she needs most and that is love, support and importantly dignity through a terrible time. Alzheimers is insidious and it robs us and our loved ones of the most precious and basic of things. Thank you for sharing this.

  14. Oh hun, I have nothing but lots of love for you and your family.
    I think a lot of parenting is impromptu. You’ve just got to make it up as you go along and do your best in the moment.
    No one can expect more than that.

  15. you never fail to humble me and make me smile.

    I am so glad to have met you my friend.

    x

    • You always make me smile and laugh out loud when I read your posts. I know it’s hard for you too, life eh?
      I’m chuffed to bits that you acknowledge our friendship mwah xxx

  16. You all sound like amazing and inspirational people Nathalie, just the very fact your children learn Spanish is beautiful. And thank god for cuddles from our little boys hey? x

  17. I love your attitude Nathlalie. What could be such a burden to your family, and no doubt is from time to time, you have turned into a wonderful learning opportunity for your children’s character, and that is such a womderful thing.

    Thanks so much for linking today. Xx

    • Did I do it ok am I meant to do anything here? Thankyou for setting the linky up I’ll try and remember next Tuesday. We all learn something new everyday here, I think everyone does in life it’s hard to spot them sometimes. Hugs xxx

  18. My MIL has early stage Alzheimers and I grieve the fact that we’re not in England with her to create what feels like ‘last minute memories’. I think you’re a very brave woman to do what you do as well as look after her.

  19. Nathalie though it would not seem possible, your heart is even bigger than you are. This post covers so much and fills out an even stronger picture of you, for me. Alzheimers is such a cruel thief and yet while you live with it daily and what it takes away from you, you’re still looking for the things it may bring. You, and your family are just beautiful. Love, Me xxxx

    • As you know I have good days and not so good ones as long as I try then I feel ok. Looking for happy pockets all the time big hugs xxxx

  20. You are such a strong woman. And your kids are wonderful. All the result no doubt of your mother being the mother that she was to you. Sending all my best positive thoughts your way. X

    • A wobbly strength on some days and very proud of my kids and it is definitely a domino effect my mum, me, my kids the good values keep on going. Nxx

  21. Suzanne says:

    Nathalie, I feel the emotion in all that you write. You are inspirational in how you’ve coped with such a devastating situation. These life skills are so important, and your children sound beautiful to the core – it is easy to see where they got it from…. yes, your Mum, but also you (although i’m not sure if you’re too humble to realise that!). I love your ability to turn a potentially stressful situation into fun!!! I’m keeping the disco idea ‘filed’ for future use :o)
    Sending you love, hugs, and support for your strength when it needs a little extra support :o) xxx

  22. Such an amazing thing it is that you are doing and the perspective you maintain. Your mum and your children are very lucky to have you, and you them. Thanks for sharing your insight and experiences x

    • Keeping my perspective can be real tough on certain days but the moment passes and onwards we go, we are lucky to have eachother xx

  23. Hi Nathalie, here is the link of my blog post…I hope you enjoy reading it. Thanks for your lovely words on your experience xxx Nicole http://www.maryandlil.blogspot.com.au/2012/04/when-one-forgets-how-to-be.html

  24. Debyl1 says:

    I am struggling with tears streaming down my face just reading your post.I am not coping well at the moment.Though I was a nurse many years ago it is breaking my heart as I visit my mum daily in a high care bed in a nursing home.
    Two short months ago her husband moved her far away from us where she had lived nextdoor for ten years then down the road for the next ten.She suddenly went down hill and became bedridden and had the onset of dementia.
    So now she is back here but not as the mum who moved away.Sometimes she knows us and other times she doesnt.She cant do anything for herself.I am mourning the loss of my mum though she is still here.It has all happened so suddenly that I come home each day from seeing her and I feel sick and just break out in tears for no reason.
    When we become mothers our hearts feel like they it will burst with love but we never expect to be mothering our own mums and our hearts to then feel like they are breaking into a million pieces.
    I admire you so much for all you do for your mum as I understand it cant be easy.She is so lucky to have your beautiful family..Big hugs xx

    • You are so very beautiful in so many ways and I feel I understand how try hard it is for you. Like you say I see my mum but she’s not really there anymore. We get by everyday and if you ever want to chat I’ll be here for you GIANT hugs lovely Nx

  25. Your heartache at watching your mum suffer with Alzheimer’s Disease is almost palpable… yet your love for your family and your determination to focus on the strengths you will all gain from the experience also shines through. Beautiful. x

  26. Some days must be like wading through treacle, we can never underestimate the strength we get from the love & support of a close loving family. It shines out in your post each & every one of you are just that.

    Lots of love to you & yours Nathalie X

    • Hello Sharon, hope all is well with you and your lovely family, love the treacle analogy glad the treacle can also be sweet, because somedays the sweetness help. Lots of love xxx

  27. Nathalie, in tears. What a beautiful soul you are .. teaching your children love and compassion and deep family values.

    Your mum looks as beautiful as you. To get up every morning like you do, start the day .. not knowing exactly what it will bring – well, I take my hat off to you.

    XXXXX So much love to you

    • Hey gorgeous thank for your gorgeous words they mean a lot. We all have so much on our plates and I’m always amazed how we do somehow get through everyday. Big love to you xx

  28. Nathalie, you are living an amazing life. You are a beautiful soul and I love that you pass on this gift to your children. x

  29. Dear Nat,
    Again I am in awe of you, and the never ending love, compassion and caring you exude. Your mama is in the safest place of all in her journey of life….with you, and your loving family.
    Much love
    Denyse xx

    • Thank you Denyse it’s getting a little tougher at the moment with the constant decline, so I’ve been under the radar still here working and caring for mum, saving my energies for what each day holds. Hope your whooping cough is better. Love N xx

  30. This post moved me. Thank you for sharing this difficult side of your life. It’s given me great insight into the idea of raising my children with the deep life skills I value as well. I don’t often know how to articulate the specifics but your post helped do that for me. It also reminded me how much I need to make that call to my mother. I keep putting it off but I shouldn’t. She’s well but we live interstate so I seldom see her and time has crept on. It’s scary to realise it’s already been 16 years.

    • It is pretty scary how quick time passes, I look at my Miss 16 and am amazed at my baby girl who is now s grown up. In our daily life there are life skills to be learnt not just by my children but by me too. Hope your mum is well xxx

  31. I’m bawling my eyes out here. For both your sadness and your strength and that of your dear mother. x

  32. Nat, I can’t begin to understand how you feel right now nor can I imagine what you’ve been going through. But, just thought I’d give you some virtual hugs and kisses, just because that’s the only thing I know to do for you right now. xx

  33. Nat, so sorry honey. Sending much love your way xo

  34. What a huge amount you have going on in your life, and what a beautiful way you have of writing it.
    You really are a remarkable woman, and I wish I could just give you a hug, all my best to you and your family in this difficult time xoxo

    • I could feel your hug from here. I don’t feel remarkable just plodding along day by day the best I can. Thank you for your lovely words. Nx

  35. Nat – Having met you for all of 20 minutes; it took 5 seconds to intuit the stuff that you are made of. Wisdom, deep compassion and a boundless sense of fun-loving energy are just a few of the traits I experienced….

    You’re right – so many people are living in extreme circumstances but this is YOUR life, your mum and your kids….and you are doing an amazing job! So much loving respect coming your way right now – truly xx

    • Kirri your words mean so much to me. We will meet again and chat for a really long time I just know it. Thank you beautiful Nx

  36. Trish Taylor says:

    Your strength is amazing Nathalie .Beautiful ,
    Poignant and sad post all in one.

  37. Clare Johnston says:

    Hi, I read your blog regularly, but never know what to say/ comment afterwards. Your strength and perserverance amazes me. My grandad has Alzimers and I have watched my family try to deal with it.

    Target
    I just want to let you know that the gift voucher would help our family a lot, I am 3 1/2 months pregnant and in the middle of trying to move, so we can't do anything for bub till we are moved.

  38. Dana Starr Hobbs says:

    Beautiful post Nathalie! xx
    Target

  39. Jessie Hay says:

    I came on here to comment for your Target competition, but what I have just read brought tears to my eyes. I agree with the first comment here, you are amazing. The strength that you show, your commitment to your mother, your ability to see the positives and what you can learn from caring for her says a lot about you. Beautiful post <3

  40. Effie Bakkalis says:

    Wow Nathalie, your post has brought me to tears. Here I was in a grumbly mood this morning, over little things that bothered me in the household. After reading your post, I realise how unimportant these things are and how I should cherish my family instead of harbouring annoying thoughts!

    Like Jessie above, I initially came here to comment so I could enter the Target competition, but now I feel sorry that I didn’t read this earlier. I have a busy life and don’t always keep up with all the blog articles, but yours are full of love and wisdom and I know I can learn a lot from you.

    Take care and I sincerely hope your mum doesn’t deteriorate anymore.
    (And fingers crossed for the Target comp too!)

  41. Mare Vieniawski says:

    Hi Natalie,
    I too came here for the target comp. i’ve read bits on your blog about child behavioural stuff, which is very interesting to me, as it is the field i worked in before becoming a SAHM.
    I know your writing must be cathartic and give you a place to sort your thoughts. Thank you for sharing those thoughts and giving us pause to think about the things that really are important. This Life gig is a miracle. xo mare

    • Right now my thoughts are running through my mind so fast, yet I can’t seem to write as I focus in mum. The life gig is what it is and how we react and find the simple things that make us :) good luck with the comp xx

  42. Nathalie, you have reminded me to take a step back and rethink some of the things I do and say with my own mother.
    I easily get caught up and frustrated with her since she had her stroke and I have become her carer. Sometimes the littlest things set me off. Thank you so much for a great thought provoking post.
    When my father passed away in 2009, my kids took it hard. Dealing with their grief, my mums grief and everything else on top of her stroke has been the biggest challenge of my life so far and everyday I am still learning to cope in different ways. You never fail to inspire me, and I cant thank you enough.
    Big love to you and your Family. xoxox
    Please put me in for the Target comp while I am here. xoxox

    • It’s so tough Jac especially in some days where it seems to be one thing after another. Sometimes I just have to walk away for a moment just to gather my strength. If you ever need to chat just drop me an email. Lots of love Nathalie xx Have entered you in the Target comp ;)

    • You won sending you an email Nx

  43. Kirsty Ross-Bell says:

    TARGET COMPETITION

    I am making changes in my childs diet at the moment – suar and preservatives to try and improve behaviour and learning. Wish me luck.

  44. Megan van Deinsen says:

    Beautiful story! I can relate at the moment as its my nan who has lost all her memory and all control of her bodily functions. “I don’t want my granny to die, but on the other hand I want her to be the man I remember, the beautiful hearted lady who just enjoyed being with her grand kids.” I miss my nan..
    “target”

  45. Merryl says:

    What an amazing story. My heart goes out to you and your family.

    Target competition

  46. Beautiful post. x
    TARGET COMPETITION

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