One of DAI's members, Valerie Schache, from Ballina in New South Wales, Australia and her husband share their story of supporting each other.
Val was her husbands care partner. Then she developed dementia, and he has also had to become hers.
Caring and supporting someone you love with dementia is uniquely challenging even if you are well, but what's it like when you yourself also need care, and that person now has dementia? We thank Val and Lawrie for sharing their unique and moving story so openly with us all.
Who cares for whom?
"Val 66 and Lawrie Schache 70 who live near Ballina NSW Australia have been married 47 years. He is a Vietnam Vet with PTSD and a below right elbow amputee 30 years ago and Val has been his care partner since 2004. Who cares for whom?'
Already five years ago 'You are losing the plot' and 'Valerisms' became 'You are DEFINITELY losing the plot’ to 'Valzheimers' until a diagnosis of dementia Aug 2015 - a shocking relief - Aricept helped but Val being Val kept searching for answers.
The latest outcomes with a nutritional functional medico supervising precise personalised reCODE protocol has made significant improvements. Not sleep apnea, but a CPAP machine nightly is overcoming very poor O2 sats - the dementia has damaged the O2 driver at rest. Comprehensive allergy testing has found extremely high IgE values not related to diet but Val has stopped wheat and soya. VitB12 injections and quality sleep for the first time in years plus vigorous exercise has significantly reduced hypomania LBCRS was 8.5/10 now 1.5/10. What was thought to be a 'mixed' is now classic Toxic Alzheimers 3 - hardest to treat because every toxic element has to be removed for a person to stay well. Just this week the frugal husband has said the large sum of money spent on answers for Val has been worth every cent. Most disciplined we have both EVER been to stay well. The spin off is Lawrie has beaten prostate cancer and he is cognitively sharper with a similar protocol.
They have 3 married children and 8 grandchildren and are active grey nomads after retiring - Val as a physiotherapist - acupuncturist farmer and Lawrie a 'Jack of all trades' engineer/farmer."
With Lawrie finding writing very difficult Val interviewed him.
What’s it like to be Val's care partner?
"'Its a pain in the arse! - I want my old Val back - the one who is calm, versatile -not volatile; sensible and doesn't argue back- I know it wont happen this side of God's eternity but it is a daily grief which I manage some days better than other. I'd sooner not be her guardian/ carer but I'm her lover and her ' bestment'- I've invested 48 years with her and the best at it - My marriage vows stand, so I'll stick by her regardless of where she is or how the disease affects her. PS - this month has a calmer Val with increasing intelligence.
Know the enemy! I've learnt as much about the disease as I can and we try to go all the important appointments together -- we are a good team. I've been proactive e.g. got a house cleaner - meant strangers in my castle and 'WAY out' of my comfort zone.
I'm now her personal manager -' Have you taken your tablets - critical as she becomes lost and a zombie if she misses.. Got your wallet, phone, keys, your shoes, your choir bag? - Have your remembered all you appointments? Our phones are synchronised so I know where she is and can initiate a 'Find my phone alarm' if she's not where she said she would be because in May2015 she didn’t know who she was for eight hours ?TGA. I want her to be independent - free to visit her friends choir/line dancing church etc. to do her Dementia Advocate work locally nationally and internationally but still safe. - I'm very proud of her actually.
Money has been a BIG ISSUE - she suddenly becomes an impulse buyer. I organised her own key card with a budget and when that is spent - that’s it! - Thank God that's improved.
Instead of arguing I retreat to my man-cave. I've learnt to say less, hug more and put her in front of the air-conditioner to cool down.. I've learnt to use my kind words, to let her vent without having to 'FIX IT' and we always speak respectfully and lovingly to each other.
Fears for the future with dementia being a terminal disease?
Becoming teary Lawrie continued 'She may be institutionalised and wont be fully in my life and I cant bear the thought if she cant remember me, BUT I will always keep visiting as I know who she is --
In the meantime I help us to suck the marrow out of life - revisiting old passions/places, taking her for drives on the beach, actively keeping her grounded and away from toxic situations. Spiritually, I make sure she watches the Church TV with me and I pray for her constantly including for healing of all aspects in Jesus Name.
I want my old Val back - but I love her regardless.. that's what I vowed 47 years ago and she is my best mate... [ we cried and hugged for a long time ] "
Val shares her story
"I've known for years bad stuff was happening but I kept changing diets and IGNORED them - I sold my 'complex pain' acupuncturist physiotherapy sole practice in 2005 after 32 years and then became a 'silo manager ‘and 'adventure Grandma' until the wheels fell of big time in 2015. I felt vindicated when dementia diagnosed. I'm a REAL dementia expert now over 50 years observation including specialist consultant for a decade in a closed dementia wing and continue to walk the dementia journey from the inside out.
I've always stood my ground in the medical world, having the peer respect of over 25 GP's and a dozen specialists all genre as pain like dementia is no respecter of persons. I love science and have a burning need to know. I've always given back and I take my dementia work very seriously; willing to pioneer a future and a hope for an early dementia diagnosis and stalling the epidemic. Cognoscopy's at 45 to be routine.
I say: Its no scarier than a Type 1 diabetic diagnosis - both terminal BUT - find early treat aggressively - reCODE and follow YOUR daily protocol assiduously and stay well and included. Confound the 'experts' like dozens of us are doing in many countries through DAI Dementia Alliance International enablement with Webinars, Zoom, connect groups and a Health Hub. I'm a research development resource person with DAI - 'Knowledge is power'
With dementia I have to SLOW down - focus on the one matter at hand -'concentrate Grandma' -get enough SLEEP - I learn strategies from a Vietnam Vet counsellor which I share with family and friends to help me stay in control-always educating people. I have learnt to humble myself and accept the considerable amount of help I need graciously and thankfully. I need to keep the daily severe PAIN of the Lewy Body type dementia under control. With the Anterior Temporal Lobe bilateral deficits I have a 'savant' type of brain- Ask me a question? -I will tell you the answer- loudly, coarsely and you may hear more than you want to know -- That's cleared out my address book. I still have family saying you don’t have dementia; but if they support Lawrie its OK -- Being under the integrated functional nutritional specialist liaising closely with my GP has meant even improvements in my latest MRI and fine ischaemia like widespread chalk is being addressed from multiple prongs.
Re the future - I have ALL the legalities of a Living Will Guardianship Power of Attorney in place for us both.. My name is down at the home of my choice and I have respite and permanent accommodation in place if/when needed. But I'm now the best I’ve been in ten years according to bestment, but life has no guarantees for anybody. I have my full drivers licence back with an annual medical review. We manage life very well."
We choose to live exuberantly beyond dementia Val has dementia -but it does NOT have us!