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In July Norman McNamara told what it was like to live with dementia. Today Norrms' life partner and carer, the amazing Elaine, has agreed to share what a typical day caring for Norman involves. Both Norrms and Elaine are part of the Ostrich Purple Angel campaign for dementia awareness on the high street, and Elaine is the inspiration for the Purple Angel logo, as Norrms calls her his Angel.
A busy morning: shower & breakfast
Alarm goes off at 6 am, time to give Norrms his medication, up and coffee made. Norrms watches TV and I have a shower when there's a bang on the door!
- "Where are you? You have been ages, I thought you had gone" he says
- "It’s OK love I am just having a shower"
Norrms goes back to watch TV.
Showered and dressed I ask Norrms to have a shower "I’ll just watch this" he says. "Norrms! Come and have a shower please? NO NORRMS! Norrms is now trying to get dressed, shirt upside down, "you need a shower love"
I finally get him into the shower. Getting Norrms dressed is another thing, it’s so confusing for him, puts both feet in one trouser leg, socks in trouser pocket, hankies now become socks. "No love, Put your hankies in your pockets and I will put your socks on"
Getting someone ready with dementia, is, like my friend says, "Pushing treacle uphill"
Good intentions & dementia don't go hand in hand together
We have breakfast and Norrms needs a clean top "AGAIN" Norrms goes on computer and is quite happy. I wash up, hoover, mop floors, clean bathroom, then I need to pay a bill at the local post office, 15 mins later I arrive back in our flat.
!!!!!!!!!
DEEP BREATH !! Count to ten !! Norms decided he would make a chilli whilst I was out as computer too slow. There is passato, chilli powder, onions all up the wall and floor and carpet, as well as in bathroom.
"never mind, go back on your computer "
He does. 45 mins later I have cleaned it all up, 11.30am we go out for a drive and a lovely walk. Norrms stumbles several times but is OK as he holds onto me. We have lunch at the cafe, everything is fine. Norrms is now tired. We go back home, Norrms has an orange, the juice goes all over his top, time to change his top AGAIN. I ask what he wants for his evening meal, he says "I’ll have cottage pie, I cook Dinner.
5.30pm Dinner’s ready. Norrms says "I asked for Chicken and potatoes, I don't want cottage pie!
"it’s OK love, just sit at table please"
Norrms sets extra places for his "Friends" they are coming for tea. "I say OK LOVE"
He has a full conversation in the lounge with them. Norrms and I sit down for tea, "there is only us here" Norrms is Hallucinating again!
Whilst having tea Norrms says "I've spilt my tea. "Doesn't matter, I will change it for you. After tea we watch TV. It’s now 8 pm.
Norms says "Tell my friends to go, I don't like them! I reassure Norrms it’s OK, he is tired so I help him get ready for bed. Norrms goes to bed about 9pm and listens to music. I can hear him shouting once or twice so again I reassure him and he drifts off to sleep.
A 'quiet' night for a dementia sufferer and his carer
10.12 pm he comes back into the lounge and shouts "What time do you call this? He thinks its 10 past 12. I give Norrms his medication and we go to bed.
Norrms goes to sleep and all quiet till about 10.30pm, Norrms is fighting and shouting in his sleep, having night terrors. I reassure him and he finally goes to settles at 12.45 am. I go to sleep, 3AM Norrms stood fighting and shouting again (Hallucinating this time) He says "I can see children who are dead and dying everywhere, PLEASE help them!!
I reassure him and settle Norrms down again. He settles at 4.50 am, I go to sleep. The alarm goes off, its 6 am.
Time to get up, never mind, put a smile on my face, today is another day.
LAST NIGHT WAS A GOOD NIGHT!
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What an amazing woman you are Elaine. Norman is blessed to have you.
I know you wouldn't have it any other way ,caring for the man you love ,continued respect and love to you both
Your words will resonate with partners and carers around the world. I am sure by sharing your day, you have made many other carers realise that they are not alone doing this hard but rewarding job for the ones they love.
Wow no wonder norm calls you his angel as you certainly are and he is so lucky to have you with him. You are both an inspiration to all.
I can find no words for you as I have been through what you are now and I can image you are a strong woman but most of all we do it out of love....always in my thought and prayers Elaine x
If only everyone had an angel like you, continued inspiration, so much respect and love to you both x
Your blog has brought tears to my eyes Elaine. Having looked after dementia patients in my role as a care assistant I can emphasise with what you are both going through. You are both amazing people and as always you are both in my thoughts and prayers. Love and best wishes. Take care xx
You are both an inspiration and have given so much insight into this horrible condition which helps me understand in a small way what my mother copes with every day. Fortunately we all keep our sense of humour which helps us through.
You are indeed an angel and no doubt you dont give a second thought just take each day at a time.My thoughts are with you always as i know how difficult it is ..and dont forget me time is far and few between so take it whenever lots of love to you both xxx
I've Been down this road Elaine, I know the strength it takes to get throughout the day. Take time for you, your health is being impacted too and you won't realise by how much until later.
After caring for mum in law I have total empathy , now through it all again with my mum .. I am so grateful that Normms and you came to light for me a year ago, what a massive help and inspiration you both were and continue to be much love x
I know how difficult it is to open your private life up to the outside world. How do you tell the truth without fear of embarrassing your loved one when much of the time they are unaware of what they are doing? It's a fine line we walk but the truth about caregiving for lewy body is that it requires lots of love, patience, understanding, the ability to not sweat the small stuff and sometimes the large stuff, a sense of humor and thinking fast on your feet. Elaine, you have demonstrated all of these and then some.
You and Norm make a great team.
Praying for you daily :)
I really can see why Norrms calls you his 'angel' and he is lucky to have somebody who obviously loves him as much as you do. Bless you both and my prayers are with you. xxx
Darling Elaine - we have heard directly from Norrms what his days are like, what he does, when he's proud, happy, whatever. We are all incredibly proud of his achievements. We also know how very much he loves and depends on you, and yes, we know that there are bad times. But we have never had it spelled out quite so clearly the day in, day out, demands upon you. You are one hell of a woman - I bow down in front of you! Norrms knows how lucky he is to have you - and now we do, too! Keep blogging Elaine - when you can get to the computer, that is! xx
Elaine, there are defintlely special people on this earth, and God blessed Norms with his own 1 in a million ! You are amazing and always so kind and give so much.
Thank you both for being so open and wanting to make such a difference for others. It is your unselfishness, that is shining through and why we all love you. God bless your friend x
No better carer than Elaine to represent the purpose of the Purple Angel!
Clean your eyes, open your heart, lift the Corner of your mouth and breathe deeply (E. Pannek). Continued respect to you both!
Elaine you are a true inspiration an ordinary woman doing extraordinary things. I know the path I walk it with my Dad and at the moment not 24x7 so I have some me time and I am savouring that for I know full well what is ahead. Mums dementia is so different to Dads LBD and I often find it difficult to remember that she has dementia too. Today you have reminded me of this fact. Together with Norrms you are making an enormous impact on peoples lives and it so right that you are the Purple Angel. Thank you is not enough but as said before they are the only words I have. Peace and light and look after your own health.
Elaine, I just want to thank you. Stay strong.
Elaine, you are an 'Angel' in every sense of the word...you have my absolute respect and admiration.
Very best wishes, Heather
( Daughter to Mum in year 15 of Early Onset Alzheimer's Disease, Personal Facebook News Supporting the Alzheimer's Society)
Congratulations on your irst blog Elaine. It brought back memories when reading it. Wishing you continued strength and love
Elaine you are a star - as is every lovely patient carer. Look after yourself too xxxxxxxxxxxxxxxxxxxxxx
Well done Elaine, I hope you are going to continue with your blog so everyone understand just what YOU are going through. It is the broken sleep that is the killer.
Both you and Norms are amazing people. Take care.
Being a live in carer myself I can only but give you praise. You are an Angel sent from heaven. Sending loads of love and hugs.
Alzheimer's and caregiving are both challenging. The more you know the better you are protected. I encourage everyone to download a copy of HOW IN THE WORLD...AND NOW WHAT DO I DO?
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