I seem to have had the same questions being sent to me lately, asking me:
‘Why is is difficult to get my mum/dad to eat?’
‘Why do they only like sweets?’
‘Why is it so hard to get them to shower?’
Etc, etc
Well, obviously I don’t know their relations, but all I can offer is my circumstances which may or may not help or be relevant.
For me, having a shower in the morning is exhausting. I’ve always had a shower before going downstairs for a cuppa tea and I see this now still as important. My cuppa tea is my reward for this exhausting process. When the brain is still waking; when the process of working out what to do takes so much; when the simple act of breathing while water is streaming over your head is a mission. Having a shower is exhausting for so many reasons….
You can, of course, get specially formulated ‘no water’ shampoo and body rinse for those that don’t like water and it’s suppose to be very good, but I simply prefer water at the mo.
I get out of the shower, refreshed, yes, but exhausted, huffing and puffing. So my cuppa tea is my welcome reward.
As for eating…..well I used to adore cooking and eating! I loved food. Now I can take it or leave it. Food is simply a fuel I know I need to have. But what I eat has changed beyond recognition. Meat is difficult to cut, to chew, to swallow, so I don’t eat meat. I used to prepare all my meals from scratch with never a packet in site. Now I can’t cook, I’ve no interest. I tend to eat the same thing every day, unless Stuart is cooking me one of his memorable meals……
My taste buds have changed – I used to love cakes and chocolate but now prefer savoury food. Others prefer sweet food. I think I’ve won on that one……
Food no longer tastes as it once tasted.
I often say how exhausting it is to have dementia. Imagine how physically exhausting it would be to swim in the sea against the tide, being carried away by the current and fighting your way back to shore. Well that’s what it feels like mentally 24 hours a day, 7 days a week.
Thinking distance has been swum yet still no further to shore or swept away with the current further than you thought.
Living in that world of constantly battling the seas; of navigating the whirlpools of disorientation of time; of swimming constantly against the tide…. Continually fighting…..until you can fight no more.
Trying to tread water and staying afloat, not succumbing to the pressures around you. Only eventually tiredness will drag you under as dementia takes you into the depths of its own world….
May all sound extreme…..but the last few days have felt just like this for me…now me thinks it’s my turn for a few good days…..
Can you imagine living in our world……?
You are so eloquent Wendy describing not only life with dementia but with many other conditions too. xx
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Oh golly, does this give me memories!! I had a sweet lady I looked after on the weekends and she was in the latter stage of Alzheimer’s. She taught me so much!! I learned how to smell flowers for the first time again, how to look at stars again, how to taste EVERYTHING for the first time all over again through her. I learned that a cookie CAN stop tears and that sometimes a pine cone will have to be traded for a cookie and it’s alright to do that.
She was so sweet and I was lucky and I wish you luck and love along your journey because I know it’s a rough one. May God Bless you.
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You have put that so well. Those of us who care for a loved one with dementia don’t really know what’s going on inside their head, but you manage to articulate it so well. Thank you. And I hope you get some better days soon xxxxx
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You find ways of coping with everything!Another poem I have on my wall is called “DON’T QUIT” and one of the lines is “so stick to the fight when you’re hardest hit it’s when things seem worst that you must not quit.”That epitomises you.
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Dear Wendy, no questions just sending you love and a hug. As ever your blog has given me so much insight into my dear late Mum’s world. Thank you from the bottom of my heart. Wishing some much deserved good days. x
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Your blog is so helpful, my dear mum is living with dementia alongside other medical conditions which means she is immobile – trying to get her to eat is challenging and she leans towards sweet foods. It really is a vicious circle – she doesn’t eat, she feels tired ……. she has ensure drinks which provides some nutrition but as you say the tiredness takes over. Thank you Wendy for sharing your thoughts it is so helpful to understand what it is like for you xxxxx
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A particularly moving day.
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Wendy, I can imagine living in your world of dementia because you have described it so well. Thank you because it’s a huge help to those of us with friends and family with dementia.
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Life with Dementia is always hard. Hard for those affected, hard for the Carer,s, but Billy has it right. Love your photos of him. He must be great company…
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I have just finished reading your book you are such an inspiration. raising awareness for this terrible illness. And making it so everyone can understand what you and others are going through keep up the good work
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Thank you 😊 x
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Thank you Wendy, for your words of wisdom and explanation.
As something with dementia I often have a difficult time explaining to someone why I no longer cook if I can get out of it, why I only want sweets, etc. Hopefully I can remember your words long enough to explain things to my kids.
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Thank you for this Wendy. As a carer it’s really helpful. It’s impossible to know what the world is like for those with dementia.
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Thank you again, Wendy, for helping us to understand better. Recently, I got trapped in our apartment’s stairwell when suddenly the power went off and I was plunged into total darkness. I clung to the railing and counted the number of stairs to the landing for our floor, but when I reached it and felt around with one hand for the door to our hallway, I couldn’t find it and totally panicked. I daren’t let go of the handrail, nor try to go back down the stairs in the blackness for fear of falling. Finally someone came into the stairwell and rescued me with a flashlight, but not before I had a good scare. This experience gave me a huge insight into what my husband endures…I think perhaps I am his handrail. You are a wonderful lady and we all admire you so much. Take good care, S. xo
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Being his handrail must be a great comfort to him.x
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A very relatable blog, Wendy, especially about the shower. What I do when having a shower is wet myself and then turn the water off. Only when I’m finished the washing portion do I turn the water back on. I then do the same routine for washing my hair. Once all done I rinse and leave. A side benefit – it uses less water! 🙂 Take good care, Wendy. (Jim, Canada)
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Thank you Jim 👍😊
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Hi Wendy, Thanks for your blog. I too have got early onset Alzheimers at 63. Still working but I don’t know for how long. Having problems remembering how to turn a signal indicator in the car and sometimes just starting it and putting it in gear. I was pushing the automatic mirror adjustment button. I usually get by but I hope it doesn’t get any worse for a while. May have to retire early as well. I will check back to see how you are doing. Best to you.
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Thank you John.x
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Thank you for sharing this im only 39 and was diagnosed with early onset dementia, most of the time i hear people say oh i feel the same even though there explanation makes no sense to me. Really would like to find a group (support) for people like us. Does anyone have any suggesstions?
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Where abouts do you live?
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