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