Dementia Support Line
Real stories
Mum has dementia and repeats the same questions 100 times over
For Enomwoyi Damali, living with her mother who has dementia has taken some adjusting to. Here, she explains how looking for the lighter side of Alzheimer’s has helped her to cope as her mum repeats the same questions.
It wasn't until Mom moved in with me four weeks ago that I really appreciated the full impact of her condition, on herself and on me. It's been a real learning curve and I've had to adapt, modify and ultimately be patient with a capital P.
Right from the beginning of Mom's diagnosis I held onto my belief that she is a person beyond the label. The Alzheimer's is just one facet of her being. Even with Alzheimer's disease, there is so much about her that is funny, endearing, and just wonderful.
Yes, there have been many moments when I have felt so sad at how dependent Mom has become. At other times frustrated by her helplessness. And at other times still, I've felt despair at having to deal with the more personal aspects of the condition.
But by nature I tend to be 'glass half full' person and so I started to write about some of the experiences that have had me smiling or even laughing out loud.
Pearl and Enomwoyi Damali
This approach has kept me going and reminded me to look beyond the dementia.
It's important to remember my dear Mom, known to others as Pearl, age 84, who has so much to teach us. About living in the moment (one of the more positive aspects of Alzheimer's), staying focussed, and giving attention to detail.
Read Enomwoyi's story, ‘One hundred times,’ about Pearl's repetition and dementia
‘One hundred times’, by Enomwoyi Damali
One hundred times. That’s how often Ma asks the same thing. Well, maybe not quite one hundred, but for sure, once will never suffice.
‘These shoes?’ she asks as I pack her bag for a week’s stay with me.
‘Yes Ma, these shoes,’ and I point at them, preoccupied with searching for the bed socks that she needs to stop her feet swelling during the night. Where are those bed socks? They’re usually in the top drawer.
‘These shoes?’ she asks again with wide eyed innocence.
‘Yes Ma, put those shoes on. You’re coming to stay with me for a week.’
‘Ok’ she says and looks at the shoes. ‘But, they’re so ugly. They’re like a man’s shoes.’
Pearl looks at the shoes with disgust (line drawing by Michael Powell)
I don’t have the heart to tell you that they are men’s shoes bought to accommodate her size 10 feet.
‘I know,’ I joke, ‘You wouldn’t wear them to a posh do but at least they’re comfortable.’ I hope all the talk about shoes will help Ma’s mind to keep focussed on what I asked her to do so I return to looking for those pesky bed socks. Ah! Found a pair. Bright red, they look like flight socks. BA or Virgin Atlantic perhaps. I roll them into a ball and push them down the side of the bag. Better look for another pair so that when one is being washed, she’s got another one.
Every time really is the first time for Ma, so I say it again with all the patience I can muster.'
‘These shoes?’ she asks… again. I look at her. It really is a genuine question. And there’s absolutely no point saying what’s in my head i.e. ‘Yes Ma, I told you that before, don’t you remember?’ or ‘but Ma, the shoes are right next to your feet. Of course you have to put them on.’
Every time really is the first time for Ma, so I take a deep breath and say, with all the patience I can muster, ‘Yes Ma, put those shoes on.’
‘But they’re so ugly. They look like a …’
‘Man’s shoes,’ I finish the sentence for her, ‘but put them on anyway.’
And I watch as she looks at the shoes. I wonder what she’s thinking. What is happening in her brain that means ‘put the shoes on’ so rapidly disappears into blankness?
Is she going to put them on? I shouldn’t test her like this, but I’m curious. Repetition is usually a good memory strategy. I used it for revision. Going over things again and again. Even saying things out loud over and over again.
I get lost in my thoughts and Ma is now looking for something in her bag.
‘Ma, put your shoes on. These ones,’ and I point to them.
‘But they’re so ugly,’ she says as she puts them on. ‘They look like a man’s shoes.’
I smile. Because the shoes are finally on and Ma has moved to looking in her bag.
‘What are you looking for Ma?’
‘The bed socks,’ she says.
NOTE TO SELF: For Mom, each time is the first time so… be patient.
Communication and language
Get tips on how to communicate with somebody who has dementia, including what to say, how to speak, and how to listen.
Donna Stansberry
saysJanet Johnson
saysThis is sooo encouraging as those of us just starting out on this “Journey toward the end” seem overwhelmed and helpless! The courage you all exhibit AND the joys that soften the difficulties inspire me to keep my mother with me as long as is physically possible.
God will give us the patience and energies, amen!?? THANK YOU for sharing and helping us !!!
anonymous
saysHi Enomwoyi, Your piece was so sensitively written. Thank you.
Carol Masterson
says(As a nurse in elder care, ) I would like to emphasize that dememtia is a multi-faced “chameleon”; no two people are the same in their symptoms. Try to imagine your person as a newborn,but in reverse progression. Their world contracts by degrees from general environment to close, from, from others to self, & eventually only concern for their internal equilibrium. They are finding their way back to their beginnings. We must forget “bringing them back;”. We must be their companion on this last journey, helping them to feel secure as they “travel”, just as we would with an infant expanding their world. The mind always wants to answer the question at hand, but the short term memory no longer helps them retain the reasoning. Each action becomes an original gesture, as when infants “discover” new things; only reverse progression—“forgetting” rather than learning. Our job as caregivers is to see the person with dementia as an individual we have recently met, not someone we have known for years. Give it a try—you may be pleasantly surprised.
Deb
saysIan White
saysMy mum Beryl is beyond this stage of dementia now, but I remember that there were some positives to the '100 times'.
Try to remember a joke or old story that she found particularly funny or pleasant to listen to. Many times, if mum was getting tearful or just 'down in the dumps' , I knew that I could rely on two or three stories about when we were kids, or a couple of silly jokes that would get her giggling and away from the sadness.
She could laugh at the same joke a 100 times in one day.
penny halse
saysMY favourate one is when my mum tells me she is going to the toilet, and i have to keep an ear out for her, if she might need help and she just dosn't come back, has put herself to bed.
I bought a baby monitor so i can hear her in the night if she needs me. Sometimes wake up to her talking to people about babies, dogs etc.,
Teresa
saysI see my mum, I hear my mum, but where is she. I do so miss having those conversations where only your mum will understand. I try so hard to answer her repetitive questions until I dread hearing it again as my patience it wearing thin. Where has her selfishness come from, everything is about her. Her health, her aches and pains, her worries,her needs. She targets her anger on my husband and even swears when arguing with him, it is so hard not to tell her off and support my husband. I then think carefully when feeling sorry for myself and realise that our roles have reversed.
All the above used to be me while she patiently and lovingly brought me up and was a really brilliant mum who loved me unconditionally. She has lost her husband and her other daughter.....there is just me and her left. I will care for her for as long as it takes and still talk to her about memories which makes her smile sometimes, even when she can’t make out what I am talking about. This condition is relentless and marches on, but I must always remember better times and love her till the end.
Laura D
saysGod bless you. After caring for my wonderful Mum for years, she sadly passed away last July, I am now caring for my husband with Alzheimer’s and FTD, he at times cannot recognise the pair of shoes in front of him, heartbreaking I know. You definitely should write more, you certainly comforted me, at times we feel we are the only ones experiencing pain especially when you cannot have a break from your loved one.
Janet fishwick
saysMy 91 year old mother has stage 4 Alzheimer's and hates her shoes. She says they are for old women and wants a new pair. Mothers shoes are orthopaedic , black,flat, sensible and have Velcro fasteners. The Velcro is what she hates most. She also refuses to wear slippers during the day, refuses to use a walking stick and relies on a hot water bottle for extra warmth. She will not use her central heating and struggles to turn on her gas fire. She refuses to have Home - Help and Meals on Wheels. She will not leave her bungalow to socialise and we, her family grow more concerned and frustrated at her stubbornness.
Juanita Wheeldon
saysHi Janet Just a suggestion but could you purchase clip on brooches (they sell shoe on at Pavers) so she felt her shoes where less male in appearance. Wishing you well
Claire wilson
saysAh, shoes, every day we/ I do a wardrobe check, and every day there’s something new to behold, quite often shoes on wrong feet, coupled with 5 socks on one, and goodness only knows what’s not the other. But there’s so much to look out for, and I try to give her autonomy, then with my eagle eye, having successfully aimed her towards the correct room to pee, discover new tactic, trousers round the wrong way. Ours is not to question why, but rather to adapt to every new facet, yet another element to add to the increasing check list, should we wish to get to church on time!
Sue B
saysHi Enomwoyi
It’s so lovely that you wrote this - there seems to be so little encouragement online for those children who do wish to care for their parents.
These times and moments are precious.
I have been recording my father’s comments as we look at books together - it is amazing which old memories seem etched, while those recent ones evaporate.
Keep writing - you have a lovely style.
Laura Murdoch
saysHi Enomwoyi. It can be so difficult at times , but those times of joy humour and love are wonderful. Thank you for sharing. My mum died last year. Exhausting though it can be, it is also a privilege to be that person who knows her and who she knows loves her. Thinking of you and sending you love
Sue Price
saysHi - I get you, you need ladles of patience & sometimes impatience slips out, then you are racked with guilt. I’m currently going through the same with my Mum & it leaves you emotionally drained with no headspace to process much else. Bless them, it’s a shocking disease.
Sue Forsyth
saysDoreen Faragher
saysMy husband is the same & I try so hard to be patient if I sound less than normal he picks up on it and goes quiet like a child when they have been scolded . That Breaks my heart .
My very strong intelligent active able Man reduced just by the tone of my voice.
cj
saysthank you for this blog post. it's was a refreshing read. my mother has alzheimer's too, we get a lot of enjoyment out of life even if she has changed a lot and is not able to be half as independent as she used to be. i try to focus on what there is to be grateful for.