Chrys Stevenson
My 87 year old mother, Daphne, is sobbing in my arms.
“I don’t know what I’m going to do! I’m useless! I can’t remember anything and I make you so frustrated!”
My heart tears as I try to reassure her.
“You’re not useless. Think of all the things you can do.”
It hasn’t been a good day. Daphne got lost in the shopping centre. When we got home, she couldn’t remember how to retrieve a message from MessageBank. I wrote the instructions on a piece of paper for her and, after a couple of tries, she managed to get the message.
“It’s for you,” she said, “Randall Someone rang”.
“Randall WHO?” I snap, still shaken over the fact that she’d been wandering, lost, through the shopping centre after forgetting where we’d arranged to meet after my optometrist’s appointment.
“I don’t know!” she sobs, “I CAN’T REMEMBER!”
So now I’m wracked with guilt that I’m a grumpy, impatient bitch and my beautiful, gentle, precious mother is distraught and it’s ALL MY FAULT.
This is Alzheimer’s disease – and, as Daph keeps reminding me, “It’s only going to get worse, dear.”
I sit her down and try to explain myself.
“I know I snap at you. And I know it sounds like I’m mad at you. But I’m not mad at you, I’m just worried … and scared. I didn’t know where you were in the shopping centre. I didn’t know if you’d gone looking for me out on the street. I didn’t know how I was going to find you.”
“But … I …. can’t … even …. use … MessageBank!” she sobs.
I go to my study and grab a pen and a piece of paper. I write out MessageBank’s number and our PIN and tape it to the wall over the phone. (Why hadn’t I done this before?)
“There! Now you don’t need to remember.”
I use my mobile to leave a new message, then I stand with her while she retrieves it.
“See, you can do it. You can do lots of things, and if you can’t remember, we’ll just write it down so you can!”
The sobbing eases, we hug and all is forgiven. But I still feel terrible. I have to learn to be more patient.
Alzheimer’s is insidious. It’s so easy to put those early lapses of memory down to old age. At first, when I raised an eyebrow at Mum’s forgetfulness, she’d stick out her tongue and say, “Don’t look at me like that. You’re always forgetting things.”
And she was right. Middle age is a bitch.
But I knew something was seriously wrong the day we were out shopping and I said, “We need to buy a mat for the laundry.”
She looked at me blankly.
“What’s wrong?”
“The laundry,” she said, “I just can’t picture the laundry.”
We’d just spent thousands having the laundry renovated. It was her pride and joy. It was inconceivable that she couldn’t picture it.
“You know!” I said, “Your beautiful new laundry!”
The blank look persisted.
“Where is it in the house?” she said, “I just can’t think …”
We’ve lived in the same house for 10 years.
I also started to notice that Daphne would fixate on a question and ask it repeatedly throughout the day.
“I just told you that,” I’d say. She’d look hurt and I’d feel awful.
Now I just keep answering the question until she says, “I’ve already asked you that, haven’t I?”
And yet, Daphne can remember the names of every kid in her grade one class and the names of all the neighbours on the street she lived on in the 1930s. She can do a crossword, play the piano, maintain a huge garden, and hold a perfectly sensible conversation. Hell, she even finishes the cryptic crosswords I’ve given up on! She does her own hair and make-up and still has the fashion flair, figure and posture of the 1940s beauty queen (Miss Empire City) whose sepia photo hangs in the hall. In almost every respect, Daphne’s a marvel – but the marvel’s memory was failing fast.
It took a few visits to the GP to convince him this was something more than just old age – although I knew that Alzheimer’s was only one possibility. I’d read that memory loss in the elderly is too often wrongly diagnosed as Alzheimer’s when, often, the symptoms are caused by prescription medications. Our doctor agreed to an experiment.
With his guidance and approval, we stopped or replaced any drugs likely to cause memory loss. I had great hopes this would be an ‘easy fix’ and our lives would return to normal. But changing her medications caused other problems and Daphne’s memory didn’t improve. It was worth a try but, as we gradually eliminated other possibilities, it seemed increasingly likely the problem was some form of early dementia.
Then the hallucinations started. Daphne woke up one night to find her room full of Asian-style furniture and the doorway blocked by a large potted palm.
“I knew it wasn’t really there,” she said. “I knew I must be dreaming. So I poked myself in the eye to wake myself up. It hurt, so then I knew I wasn’t dreaming but I couldn’t work out why all this stuff was in my room.”
Another night I woke to her calling out and scratching frantically at her bedroom door.
“Chrys! Chrys! I can’t get out! I can’t get out! The room’s full of pink furniture!”
I have to admit, I’d be desperately trying to escape if my room was full of pink furniture too! But this was no laughing matter, it was time to see a gerontologist.
My grandmother had Alzheimer’s. I knew this must be in the back of Daphne’s mind, but up till now, I’d studiously avoided using the ‘A’ word.
But, as we wait to see the gerontologist, I decide I have to be the one to broach the possibility – not the specialist.
“Mum,” I say. “You know we’re going in to see the gerontologist, and he’s going to try to work out why you’re having trouble with your memory.”
“Oh, is that why we’re here? I was wondering about that.”
I take her hands in mine, “We don’t know what’s causing your memory loss – it might be all sorts of things – but you need to know that the gerontologist might say you have Alzheimer’s.”
“Yes,” she replies calmly, “I know. I’m getting just like grandma, aren’t I?”
We see the gerontologist and he confirms my suspicions.
“It’s probably early Alzheimer’s,” he says, “although it may be another form of dementia – or a combination. It’s almost impossible to tell. We’ll do an MRI and have her tested by a neuropsychologist, but that seems the most likely diagnosis.”
Alzheimer’s or dementia – whatever we call it - the effect will be the same; a (hopefully) gradual decline until there is less and less memory, less and less independence, and, eventually death. Dementia is incurable and terminal.
There are drugs, the gerontologist explains, that might result in some improvement and slow the rate of decline. That’s good news. We decide to think about it.
“There’s plenty of time,” he says, “you’ve caught it very early. We usually don’t see patients until much, much later than this. Their relatives just put these early symptoms down to normal old age.”
I mention I’ve read that the earlier Alzheimer’s is identified, the more successful the treatment.
“That’s true,” he replies, “the medication usually only provides a small improvement and, if it works, the decline plateaus from that point, so it’s good to get an early diagnosis and start from a higher base.”
We leave his office and I sit Daph down in the waiting room.
“Do you understand what the doctor just said?” I ask her.
“Yes,” she says, “And I’m really angry. How rude just to blurt out that I had Alzheimer’s like that, when I wasn’t expecting it. You’d think they’d give you some warning!”
Ah well, I tried.
We had a rocky six months after the diagnosis was confirmed. As Daphne’s short-term memory continued to decline, we decided to try the drugs.
The gerontologist put her on Aricept. Daphne’s small and doesn’t react well to new medications. The Aricept made her gastric. Being gastric reminded her she was on a new drug. Being on a new drug reminded her she had Alzheimers. Having Alzheimers reminded her of her mother’s last years. She became teary and depressed. The doctor prescribed anti-depressants. They made her head feel ‘fuzzy’ – and they made her gastric, too. There were more tears and distress. Daphne began to feel that her life was over and I began to wish mine was!
Finally, in desperation, (and in consultation with the doctor), I halved the dose of the Aricept until she could get used to it. We changed the anti-depressant to something she could tolerate better. To optimise her memory, I’d tried to keep her off any drugs that had a neurological effect; but it didn’t help her memory and made her life harder. Finally, I relented and asked the doctor to put her back on the ‘tried and true’ drugs. We’ve juggled so many combinations and doses of drugs I reckon I deserve a degree in pharmacology. I researched Alzheimer’s, memory loss and ‘hypno-pompic’ hallucinations so thoroughly the gerontologist asked if I had a medical degree!
“No medical degree,” I replied, “Just a PhD in Daphne.”
Things are generally good now. We have bad days where the stress of being a carer combines with the fear of what lies ahead and turns me into a cranky, impatient bitch. Daphne has days of great lucidity and days of fog. But, generally, she’s happy and well and back into her old routine and I believe the Aricept is helping with both her memory and her mood.
As I write Daphne’s playing classical music on the piano. How can a brain that can’t remember something that was said 10 minutes ago, still cope with the complexity of a musical score? I don’t know, but I’m glad it does. Nothing gives me greater joy than to hear her play.
I’d like to say I don’t know what the future holds, but I’ve seen the future. Mum’s mother, Clara, had Alzheimer’s. Eventually, we had to put her in a nursing home. Mum visited her nearly every day until she died.
I can only hope we can ward off the decline and keep Daph at home, happy, active, intellectually stimulated and independent for as long as possible. But we’ve been pro-active and found a lovely nursing home, and we’ll book her in sooner rather than later. It doesn’t mean we have to commit – it just means it will be easier to get her in to a place of our choice if that becomes necessary.
Meanwhile, I try to maintain some independence of my own. I have my ‘causes’ and I make an effort to stay in contact with friends. I can go out to dinner – Daph’s fine as long as I leave a note reminding her where I am, when I’ll be home, and how she can contact me. I can even go away overnight – although this requires the fridge being wall-papered with notes. For longer absences, a friend or a relative comes to stay. It’s manageable.
I try to be creative. Since the hallucinations started, I’ve put a monitor in Daphne’s room so she can wake me easily if the pink furniture monster comes back. I’ve also installed motion sensor lights, so she never wakes up to the shadows of a dark room. So far, so good; no more hallucinations.
I’m not a doctor. I have no medical training whatsoever. But, as someone living with a parent with Alzheimer’s, I’d say if you’ve noticed memory loss in your elderly parent, don’t just accept it as normal. Watch them carefully, note what’s happening, broach the subject sensitively and ask if you can visit the doctor with them.
Be their advocate – don’t let the GP brush off your concerns. Respect the GP’s expertise, but ask for a referral to a specialist if your gut instinct tells you something is wrong. Do some research so you know what questions to ask, and what symptoms to look for. Don’t assume that a little knowledge from the internet makes you smarter than your specialist – use your new-found knowledge to work with them, not against them.
Don’t leap to conclusions and assume the worst. Dementia isn’t the only thing that causes memory loss. Ask your doctor to review your parent’s prescription medications and explore other possibilities.
Try to be patient, but don’t beat yourself up when, after being asked the same question ten times, you snap, “I just told you that!”
You’re human and dealing with a parent with Alzheimer’s is stressful and frightening – but do try not to be cause of more angst than necessary. If you’re frightened, just imagine how your parent feels! Talk to each other.
Find creative ways to help your parent cope and stay independent. Buy a whiteboard. Use notes. Don’t assume they’ll remember – write memory prompts where they can’t miss them. Daph struggles to make up soup from a can, but she can do it like a champion with a set of clear instructions taped to the kitchen cabinet.
Importantly, don’t treat your parent like a child. Your parent has memory loss – they haven’t mysteriously metamorphosed into a five year old. I don’t just assume I can go into the doctor’s surgery with Daphne – I ask if it’s OK. I don’t just make arrangements or accept invitations on her behalf – I ask her first. If we’re seeing a specialist and I’m asked a personal question about Daphne, I’ll say, “Do you mind me talking about this?” Just as I asked if she minded me writing this article.
I try to involve Daphne in as many household decisions as possible. I might be 53, but she is the mother, not the child, and that relationship should be respected.
If you have to become your parent’s carer, try to have a life as well. Your parent’s independence and happiness will depend a lot on yours. Enlist the help of friends and neighbours so you can spend time apart from your parent and go out with friends. Government and community support is available as well – look into it. Don’t be martyr. Ask for help when you need it.
And, finally, remember, that laughter and empathy go a long way towards easing tensions. This may come as a shock, but you’re probably not perfect either.
“Do you want a cup of coffee, dear?” says Daph.
“That would be lovely,” I reply.
About 20 minutes later, she comes back into my study.
“Would you like a cup of coffee, dear?”
I raise an eyebrow.
“I’ve already asked you that haven’t I?”
“Yep – about 20 minutes ago.”
“Did I make it?”
“No.”
Her eye rests on a full cup of stone-cold coffee sitting on my desk.
“Then what’s that?” she says, pointing accusingly at the ‘evidence’.
“Ummmm, that’s the coffee you brought me 20 minutes ago,” I mumble sheepishly.
“Sorry, I didn’t remember you bringing it in.”
The triumph on Daph’s face makes my humiliation worthwhile.
But, oh dear! Am I next?
Chrys Stevenson is a freelance writer. Chrys will be the guest speaker at Dying with Dignity’s NSW AGM and Conference to be held from 2pm-4pm, this Saturday, 24 March at the Sydney Mechanics School of Arts. The topic of Chrys’ speech is “The Debate on Assisted Dying: Distortion, Misinformation and the Influence of the Religious Lobby.” The public are welcome to attend and admission is free.
Has someone close to you suffered from dementia?
Comments
57 Comments so far
My dad has terminal cancer and doesn’t have long. I am an only child and 62. Mum started telling my 21 year old daughter that I had stolen some photos about 2 years ago. She asked my daughter not to tell me so I never said anything to her. I have been going to look after things at their place 2 to 3 times a week, cooking, shopping, cleaning, taking them to appointments etc. dad is too ill to go out at all now. Christmas Eve after I had arrived home getting shopping for Christmas Day (we were going there because dad is too weak to get out), mum rang and told me I had stolen keys, photos and 2 tea towels. I told her that I hadn’t but she yelled and went crazy. She gets crazy with dad too and he has cried to me about her. Anyway I chose to still go ahead and do the cooking etc for Christmas Day. My daughter and I went down but mum would not open the door. Dad had to beg her. It was awful when we went in, dad was wet eyed and mum psychotic. I packed the fridge and left everything there and we left. Many more things have happened one being that my phone rang from their house (mum has macular degeneration and can’t see well it dial phone). I heard mum screaming and swearing at dad. He said that I had not stolen anything but she was crazy. I heard her tell him that she hated me and he was to tell me that I couldn’t go there or ring anymore. Dad has to do as she says because he is too weak and she gets rather violent. I have been to see her doctor and the palliative care nurse. They have nobody except us. The neighbor has gone away in holidays. The nurse told dad he needed to go to hospital but mum cannot be in her own. She won’t allow any help suggested by doctor. Has stopped all contact with my dads neice who lives in Perth and from his nephews in UK. She has not been assessed and would refuse in any case. They will have no food in the house. She has told the nurse that I have stolen more items and also the doctor. The list keeps growing. She also told the nurse she was scared I would break in with the keys I stole. I have no keys. I do not seem to be able to help them and have been told they cannot be forced to do anything. I am beside myself physically and mentally. What can I do next?
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My mum has Alzheimer’s too & her husband also is a late stage cancer patient (tricky being a step-father, he doesn’t communicate what is happening at home) – but my Mum is in the early stages – more like the story above. I have 2 sisters and a caring extended family so always have someone to talk to that understands – but still think getting emotional help beyond friends & family can help. Alzheimer’s Australia might have groups in your area that you could attend – knowing you’re not the only one having experiences like you describe and offering possible suggestions might be reassuring. All the best.
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I wish it had waited till her 80s to affect my mum. She unfortunately was diagnosed with dementia in her mid 50s…
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Thank you for sharing your story. I don’t normally comment on these things however my Grandmother – also called Daphne – is currently living with Dementia. My mum Lyndall has morphed into her carer. It is incredibly sad to watch and your article helped offer some laughter around a tragic subject. Thank you
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Hi.
This is a very powerful post. I have had connections through both family and friends who have had Dementia/Alzheimer’s.
This led me to create my free monthly brain exercise ezine The Brain Food Factory (www.brainfoodfactory.com) to help people exercise their brain regularly.
Please remember however, brain exercise is only part of the plan. To try and maintain a healthy brain, physical exercise, good diet and mental exercise must go hand in hand.
Please feel free to sign up for my ezine. There are no catches. It really is something for nothing
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Yes a very beautiful article. It is awful to see how many of us have parents so young being diagnosed with Alzheimers. My Mum is in the final stages of it, having first shown symptoms at 62. I watched my Dad die of an awful cancer but I would prefer cancer over Alzheimers any day. My biggest fear is that Mum is ‘in there’ and is aware of what is happening but can’t tell us. People don’t realise how horrifying this illness is. I hope they find a cure and don’t just keep creating drugs that prolong the awfulness, for sufferers and their carers. My Dad lost his life because of the stress of caring for Mum, it is truly an insidious disease. My love and thoughts go out to all of you who are presently watching your loved ones disappear, like I am. It is torture.
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Thank you all for your lovely (and sometimes heart-breaking) comments. For those of you who mentioned your interest in my speech to Dying with Dignity NSW, the full transcript is now available on the DWD NSW website – http://www.dwdnsw.org.au/ves/index.php/the-debate-on-assisted-dying
This is an issue of huge importance for all of us with elderly parents – and, of course, for ourselves as we get older and more likely to suffer terminal illness. If the article moves, angers or inspires you, please consider joining Dying with Dignity (SAVES in South Australia and WAVES in WA) in your state. There’s a list of links on my blog here: http://thatsmyphilosophy.wordpress.com/2012/03/25/how-will-you-die/
Hoping to write an article about this for Mamamia soon!
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Thank you Chrys. I’m bookmarking this article for future reference. Just in case I need it.
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beautifully written post. amazing detail and insight for us.
i would also love to hear about your conference about dying with dignity.
all the best, hope to read some more of your work xx
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This is how most of my family ends up, on both my mother and father’s side. Parkinsons and alzheimers together, or alzheimers alone. I have several family members in care facilities as we speak, and I acknowledge that it is something I will probably watch my parents go through (I think my Mum is at the beginning of it, at only 57) and probably myself. I only hope they find a cure before my daughter reaches that age.
You raised some important points. Out of respect for my family I never say “But you just asked me that!” but that’s purely based on my experience of alzheimers. It requires a lot of patience, but once you understand that they are not being difficult… that it is an illness, you can start to understand and respond accordingly. It is almost like a toddler, who constantly asks “Why? What happened?” And for no other reason than they want to understand and connect with you and the world.
In regard to the subjective memory retention, I have seen that with all my relatives with alzheimers. For example, my beloved grandfather passed away 4 years ago. For the last few years of his life he was in a nursing home and could not tell you his own name in that time. Nor the name of my mother who visited several times a week, who he dearly loved. He often thought she was his wife. Yet he had been a skilled surgeon in his career, and during the day, every hour, on the hour, he would get out of bed to do “the rounds”. He would walk to each room, check on every patients and ask how they were, check their pulse and temperature, read their charts, and then go to the nurses desk and confer with the doctors to what he thought should be changed, or who needed assistance.
I spoke to the doctors and nurses numerous times, who were astounded by his observations and happy to include him in meetings and listen to his recommendations. He was clear as a bell when it came to medicine, and I’m grateful they let him participate.
One thing I know is that this is not uncommon, for someone with alzheimers to retain knowledge of their career, or of a hobby, but not of people they love. And its not an indication of their priorities, but rather that people and relationships are much more complex and span over a long time. Alzheimers patients have particular difficulty with long term memory. My grandfather often thought I was my mother, subsequently he thought he was 45 again. But the medicine… he had practiced “the rounds” for most of his life and in the nursing home it was wonderful for him, whereby people come and go quickly (in his short term memory mind), and it made him feel a useful part of society at a time where he had little other “meaning” as a functioning person.
Potentially it was also a case of automatic pilot… I know for myself, when I have been very traumatised, that I can drive my car, cook dinner, make the bed… but cannot converse with people I love. Even though they are the most important to me in the world.
I don’t know if this makes sense, but I hope people who are watching a loved one go through this can understand a little better that although they love you dearly, remembering you is much more difficult than remembering something which is more transient, like my Papa and his “patients.”
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Also… and sorry for the thesis! But a point I wanted to make, is that when you have a family member/ friend with alzheimers who is losing their grip on social relationships, its fantastic to have them engage in their favourite hobby, particularly with others in the same situation.
My grandmother is also in a nursing home with alzheimers, and was completely miserable, she couldn’t remember who we were or what to do with herself. So we arranged for her to join quilting and craft lessons, which has been a lifelong passion, and she is now thriving despite her deteriorating condition. She very occasionally remembers who I am, and when she does, she sends a piece of craft with a note from one of her carers (she doesn’t remember how to write.) My most happy possession is a quilt she made for my daughter after I sent her a picture of her as a newborn. It took her a year to complete, and its gobsmackingly beautiful. Hand sewn. I have no idea… I just could not have done it myself. Ever. I couldn’t stop crying when I got it. She even made a bag for the quilt with a hand embroidered name on it (which she had a carer trace for her as she didn’t know how to write.) I visited her in Melbourne shortly after (I’m in Sydney) to thank her, and she had no idea who I was. But I held her hand and thanked her all the same. When I showed her the quilt she started crying and said that she wished she could remember who I was, because she knew I was important.
Apparently she asked a lot of questions after we left, went through photos, determined to figure it out. Until she forgot that we had visited, and went happily back to her craft. Its this kind of story that I hope will open everyone’s eyes… its not just black and white. Sometimes they remember a little, and can’t communicate. So just work with them, be responsive, and patient. As I will be with my parents. And I hope my daughter will be the same with me.
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My mum has been diagnosed with cerebal ischemia, a form of Alzhiemers. She is soon to turn 84, and has been living in a nursing home since September last year.
It has been heartbreaking to see how rapid her decline has been. I dread the day that she will no longer recognize me. I saw a documentary on the ABC called ‘The Longest Goodbye’. That title really sums up the disease.
A book that I have found very helpful is ‘Contented Dementia’ by Oliver James.
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My maternal grandmother had Alzheimer’s. She lived independently with a mild degree of it for years and used to ring up for mum every day and we had the same conversation every day. One day it clicked with her what was wrong. It was very sad.
She ended up in a nursing home and even when she had trouble remembering her name, she remembered her great granddaughter.
I watch my mum very carefully, but at mums age my nan had quite developed Alzheimer’s, so she may escape it. Hope I don’t end up with it.
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I too have much experience with dementia my mum diagnosed 4 years ago at age 61. She has lewy body dementia- one of the main characteristics of this type is the hallucinations. I encourage you to read the lBDA forums as there is a lot of information on there about what can make the hallucinations worse- medications etc. it’s a tough long road. So far we are blessed that the rate of decline is not as nasty as I had first thought. Love to you and your mum.
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My nonna had dementia coupled with a GP who wouldn’t see sense who told her she was lonely. My mum and a little bit me struggled with severe hallucinations one of which involved me singing under her house the night after i had had throat surgery and was unable to speak for 4 days. It still breaks my heart that i had screaming fights with my nonna because her GO was a douche who refused to let us truly help her. I called Wintringham ( her carers ) when my mum was in Europe because i couldnt handle nonna that week with mum away.They called my older sister and advised her that i should seek psychiatric help. No one believed mum or i until finally she was revealed at her worst complete with bad make up and black eye from falling down again. We have a running joke that if my mum turns into nonna the “shovel to the back of the head’ it’s so hard for every one. But in reality my heart will break like yours and i hope unlike nonna that mum completely loses it quickly and doens;t suffer the pain of knowing she is losing it
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I fear my mum has the early stages of deminta/old timers (as we call it) she loves her crossword puzzles and random trivia, but coversations she has with me or my siblings are all the same, and even if we are there she repeats the same stoy again and again. I wanna say to her mum r u ok what ru thinkin. I know she isnt ok even if she says says yes.. she cant remember that she has told the same story for the 4th time…she is only 64 but has outlived her parents and her brother…what are 3 of her kids to do when we joke about how forgetfu she has become and how she is forgetting the easiest of tasks and yet we are too powerless or scared to do anything about it. Noone llikes to see their parent s get old but how do u confront them with the facts
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I have written a long post above about my experience with alzheimers. But I think that when you have children and grandchildren its very natural to repeat your stories, forgetting who has heard what. I have the same experience with my friends in their 30′s who have kids… we all just say “Oh yeah, you said that 30 minutes ago” but people forget when they are stressed or under the hammer.
Also, people do lose memory with age, and its not necessarily alzheimers. It becomes a problem when they don’t remember who you are, how to put their shoes on, or do things like igniting the stove and forget about it. If its just repeating stories I would keep an eye on it but not jump to conclusions as long as she is functioning in her life.
BTW my boyfriend repeats stories all the time, forgetting he’s told me… he’s 33, no family history of alzheimers, he’s stressed with work, and just forgets. I have friends who do the same, and half way through say “Oh wait… did I tell you this already?”
Just keep an eye on your Mum, but repeating stories is not necessarily a determining cause of azheimers. I hope that puts your mind at ease
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My mum is 63, her dad had dementia for the last couple of years of his life in his 90′s, and mum is now showing signs of a similar fate. She’s in Europe and I’m not coping with the idea because I won’t be able to be there for her when things start going down hill. So far she’s trying to stay intellectually challenged, but only being able to catch up on Skype monthly it’d evident where she’s headed…
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Thanks for the article. Although my mother is suffering a different disease (metastatic breast cancer now in the brain), there were similarities in mum’s condition and Daph’s. Memory loss is a big one and I am often repeating myself to the same questions. I know it’s partly her disease and partly her medications and I answer her questions again with good grace as if she hadn’t asked them before, but my heart sinks each time. When with medical professionals I too try and let mum speak first and answer the questions but she is so exhausted all she has to do is look at me and I know it’s my turn to take over. Sometimes not to embarrass her, I’ll give the doctor/nurse/OT/physio/social worker/welfare officer/volunteer coordinator/hospice staff/personal care provider more information as I see them out.
It’s difficult seeing your mother leave you even though she’s still here. She’s only 52 and I’m 30. My children are 2 1/2 and 5 months. Im an only child. We have no family where we live, but we are lucky to have close friends. Mum needs constant supervision or she’ll fall and hurt herself. The responsibility is huge but I’m scared about what will happen when it’s all over. So I’m just trying to make memories for when the dark cloud comes along.
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Great article Chrys, you really addressed the ups and downs of this terrible disease well. It seem that you and Daphne have a good approach to dealing with Alzheimers, and keeping a positive attitude – not an easy thing to do at all in this situation.
I lost my grandmother nearly three years ago, but she had been living with Alzheimers for 13 years – so her death was almost like losing her for the second time.
You captured the difficulties, some sensitive and helpful advice and even some humor – Thanks for sharing.
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I have had a lot to do with people with memory loss and I empathise with you and Daphe. Chrys the advice that you offer is superb and I agree, sometimes the best medicine is to just share a laugh together.
XXXX
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I just read this: http://www.mamamia.com.au/parenting/sometimes-i-deserve-a-freaking-medal/#comment-716515…
You know what YOU and your mum deserve an elephant stamp!!!
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Great article Chrys, I can totally relate, especially about keeping your sense of humour. Life is so much better when you can giggle and say “oh mum, I’ve already told you!”, rather than snap.
My mum was diagnosed 8 years ago (aged 63). She still lived life, playing the piano all the time (music therapy was a lovely thing to do together for a year), playing tennise, driving for another few years, walking, crosswords etc, and then as we started to notice she was getting a bit more vulnerable (had a bout of pneumonia etc), then she had a major stroke on her 70th birthday. We had to make the heartbreaking but necessary decision she couldn’t live with Dad anymore, but with her paralysed and incontinent she needed 2 nurses around the clock.
Anyway, luckily, found a beautiful place, we love it, mum loves it, she can’t talk anymore (or walk obviously) but she laughs, smiles and still tries to sing, and still has a cheeky glint in her eye. She’s still my mum and I love her to bits.
“live for today, not for tomorrow” – my mum taught me this my whole life and it’s so true.
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A beautiful post and so well written. My 87 year old Mum also has dementia and resides in a nursing home. The path to this point has been much more like a dirt road than a motorway but I am happy and so is she. Mum also suffers from hallucinations but by and large they are happy ones. Mum is completely surrounded by people she loves (her parents, her brothers, the neighbors from where she lived 60 years ago) , so she is certainly not lonely!
Mum did a ‘runner’ from her Nursing Home some years ago when she was more mobile. We were interstate on holidays and I remember my legs buckling with fear as I stood in country Victoria with an ice cream dripping down my arm as the Nursing Home rang to tell me they couldn’t find her. Mum had managed to get herself to a suburb some 30kms away without a purse or handbag and without the ability to remember her own name. God bless the good Samaritan who took her to the local police station and they kept her safe until they figured out who she was.
Conversely, having your mother want to talk about her young adult life and especially her SEX life can be shockingly confronting, but hilarious at the same time – reminiscing about someone who was good in bed is good for her, me? not so much. O Lordy!!!
There have been some good things to come from this however. Mum was never open with her feelings when I was growing up. She never told me she loved me. Now, when I have have my head on the side of her bed whilst we sit, yet again, in the Emergency Dept at 2am, I feel her hand come out and she ever so gently strokes my hair and tells me how much she loves me, quietly and without any fuss. I know this is true.
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Your post made me teary! I could feel your love for your mum.
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Beautiful story and thank you. My father was correctly diagnosed with Alzheimer’s a few years ago. It was a long road to get that diagnosis.
The first battle was with my mother who did not want to face it. She put my dad’s “forgetfulness” down to him just being deliberately difficult. I kept bringing up incidents that alarmed me but she blocked me each time. So, I actually had to deal with her fear and anger first. My dad also was scared, of course, as his mother went down the same path, and I am sure, deep inside he knew.
I finally got him to the doctor, gently reassuring him. I had such a difficult time with the doctor, trying to get him to listen to the symptoms. I had been to an Alzheimer’s Assoc seminar and realised what bumps I would come across. My father admitted to having moments of “blinding flashes” where he couldn’t see for sometimes up to 10 minutes. This would often happen when he was driving! The doctor suggested that these were mini strokes. He would not agree though to having my father’s driver’s licence cancelled! Neither would my mother (who was independently mobile as well).
Finally he is diagnosed and his decline was rapid. My father’s type of Alzheimer’s is apparently the worst – in that he lost the capability of speech very quickly. He has no method of communication – he cannot talk or write. When you try to guess what he might want he can’t indicate in any way what it may be. When he fell he was unable to tell us that he fell and was seriously injured. It was only a few days later we noticed heavy swelling and bruising around his foot. He had broken a bone in his foot and would have been in immense pain but could not tell us. I think this was the hardest time for everyone, including my father. This was an interim period where my father knew what was going on, could see the affects on his family, but was relatively helpless. He still had his mind in some capacity, as there were times when he would simply sit in his chair and weep – he so wanted to communicate, his mind knew what he wanted to say, he just couldn’t do it. The day he grasped my daughter and just hugged her tight and cried was a heartbreaking day.
He is now in a nursing home, where the staff there are absolute angels. The hard part now for us is watching a once vibrant, highly intelligent man, who prided himself on his photographic memory, sit and waste away. I am so relieved for him that he is unaware of what he is doing, as some of his antics leave you speechless and sadly appalled. He would be mortified to know what he does sometimes and it is a terrible strain on our family. His grandchildren can no longer visit and struggle to understand. This is not quality of life and my father will also not die with dignity. He deserved so much more.
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God, you just made me cry!
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Me too
Every other comment has pulled at my heart strings, but this one set me off. What a devastating disease.
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Couldn’t have said it better. Very similar story to that of my father. Luckily for us he kept his gentle nature so we didn’t have to cope with anti-social behaviour. I came to terms with him dying long before he actually passed away a year ago. It was and is, difficult learning to live without him though.
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I am an occupational therapist, I think that you have the right idea. All too often people assume that when someone has dementia they lose all ability to make decisions for themselves. It’s so important to include them in ask decision making (of course within reason). These individuals have been valuable members of society and it’s important to preserve that dignity. It is so dreadfully hard on families. The grieving is daily. Slowly their loved one is taken from them. Very tragic. But as you’ve said there is still so much ‘ability’. All the best to you, you’re providing wonderful care.
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I’m a neuropsychologist specialising in the early detection of dementia- and I totally agree. Great comment, Jrn. Dementia is diagnosed much much earlier these days than in the past- some of the people I see are still working. As Alzheimer’s Australia says, “life doesn’t stop when dementia starts”. There is still much that can be done, particularly in the first years of the illness. I wish all my patients had a carer as committed as you, Chrys.
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Great article, daph is lucky to have you chrys, you need a sense of humor at this time- someone once said you might as well laugh, it better than crying ! My dad has dementia at 73. We noticed a few years ago and repeatedly asked for him to be tested but the docs couldn’t diagnose anything – his scans were clear and his answers to certain questions were met with” that’s ok, we all forget names sometimes don’t we?” and left as that. Mum cares for him but it can be extremely frustrating and degrading – the mood swings, the name calling, becoming frustrated and impatient ….and then, he’s great – the man we knew has returned and is happy and talkative! It’s hard people, but find the humor when you can, the darkness for patient and carer is depressing.
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Thanks Chrys, such sound, sensible advice.
I am unusual as a 31 year old to have had my grandparents in decline when I was in my teens. My brilliant, witty grandmother became increasingly erratic and depressed over my childhood, and when she was eventually diagnosed with dementia, she declined very quickly to a near vegetative state because of a doctor giving her the wrong medication in hospital.
I think the hardest thing for my parents in caring for her was when you would read a poem or show her photos from her childhood, and just for a second she would come out of herself and react. Heartbreaking those later stages, when you wonder (even hope) that the person is not aware of anything in the world.
I know that Alzheimer’s Australia were a wonderful support for my parents during these tough times.
http://www.fightdementia.org.au/
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Such a lovely, well written piece. Good luck to you both.
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I am an Aged Care Nurse, and care for a range of different stage dementia residents. Sometimes I think society forgets that not only is the person suffering dementia, their family is too. Dementia is such a heart breaking disease, and is really horrible to watch it progress.
Thank you for your story Chrys.
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Dementia is such a cruel disease. It robs you of the person you are, your feelings for the people you love. We have not long buried my beloved Nan who suffered with Dementia for 6 years. Good luck with your mum Chrys, and enjoy ‘good’ days.
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Dementia is such a cruel condition. I work as a nurse in a nursing home and every day I am saddened and amazed by the people I look after. It saddens me the way dementia causes you to lose your ability to express yourself with words.
You can see that something is wrong, but if you ask them, the answer you get back often makes no sense.
It amazes me though that they can’t remember what they had for lunch but they would be able to describe in detail what they ate at their wedding reception 50+ years ago.
I think there is a lot of fear in society around dementia. Nobody wants their loved ones or themselves to develop it, so there’s a lack of understanding.
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Thanks for this heartfelt & practical article, Chrys. t would also be pretty cool if you could publish your speech somewhere for those of us who cannot make the conference.
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I adore this article, so honest and great advice for anyone going through something similar.
Why does Chrys refer to her mum as Daphne throughout the article? Personally, it felt a little strange to me, and I’d prefer to have read it written as ”mum” – each to their own though.
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That is Chrys’s relationship with her mum – she calls her Daph
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My mum would have given me a swift clip behind the ears if I dared call her anything other than mum! that’s why it seems strange to me. But all relationships are different
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My nephew decided at about three or four years of old to call his mum and dad by their first names. He still does si or so years later. His older brother calls them mum and dad…. Who can say why?
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I’ve called my parents by their first names for as long as I can remember… Whatever works.
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I thought this too… each to their own but I got confused when she said that her grandmother had alzheimers… I assumed she was talking about her mother (Daphne) and I had to re-read it because it wasn’t making sense. Initially I thought Daphne was a different person, but then again I am very sleep deprived!! Brilliant sentiment none the less, once you get around the name.
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It’s great to read such a well-written REAL article. Thanks so much for sharing it. Sounds like you are both doing an awesome job, she’s lucky to have you and you indeed are lucky to have her.
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What a lovely, heartfelt article. Late last year we noticed an odd decline in my grandfather’s memory. We tried to shrug it off as old age but his memory had always been so good that it was cause for concern. He had numerous tests done and we were all crossing our fingers that it wasn’t alzheimer’s… It wasn’t. He was diagnosed with an inoperable terminal brain tumour.
Never second guess your instincts about the health of the people you know best.
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When I started reading this, I thought “Oh no, Chrys is going to make me cry again!” but no. I have a smile.
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One of my worst fears is what’s going to happen to my parents as they get older. They are separated and live alone, granted they’re only 50 & 55 but I wonder if I’ll ever have to give up my job to look after them. And that scares me and makes me feel very sad.
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Sorry, I get that you love your parents, but it scares you that you might have to give up your job to care for your parents? Did they not give up time from their career to raise you? And/ or did they not sacrifice a substantial amount of their salary (not to mention personal life sacrifices) to raise you for 18-ish years? You may have to look after them for a few years, but your missing salary in that time is a moot point…what parents do for their kids (generally) deserves a friggin medal. Please correct me if I’m wrong.
Bloody hell… my mother was not perfect, by any means. But she supported me for 17 years, neglecting her personal ambitions. And then my 2 brothers as well. I’d give her my right arm for that.
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I’m 24 years old and the thought of my parents losing their independance and relying on me to look after them scares me.
Sorry if that is so selfish. I didn’t realise I had to comment on here and pretend to be a martyr and not say what I really feel. I bet that being scared in that situation is not an uncommon thing.
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You shouldn’t have to apologise – its a perfectly normal fear! Its very easy to say “its only for a few years” but being a carer is an immensely difficult job and it can be extremely tough financially. I doubt anyone who has actually cared for ageing parents would be so flippant.
Beautiful article Chrys, and you are doing an amazing job!
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Lovely heartfelt article Chrys. It seems that the longer you live the more likely you are to develop dementia. My father started showing signs of dementia when he was only 65, so it made it a bit easier to spot.
I was with him in the supermarket and he got lost and then he couldn’t work out the change that the checkout person gave him despite her explaining it to him a couple of times. I just saw a look of total confusion in his face. As a Registered Nurse I immediately recognised that look.
The hardest part was having to convince my mother of my suspicions. She didn’t really believe me but agreed to have him assessed. My father had been the treasurer of the local branch of the Liberal party for many years. One of the questions he couldn’t answer was “Who is the Prime Minister?” He had a stab in the dark at Menzies but this was 1990.
It is really hard to watch someone who has been such an authority figure in your life turn into someone that you hardly recognise.
Daph is really lucky to have you Chrys.
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Lovely article, Chrys. Beautifully handled and full of good advice.
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Dementia is hell. My heart goes out to all who suffer and are effected by it.
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What a great read. Beautifully written, touching and insightful. Thanks Chrys
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Thank you Chrys for writing this. You and your Mum sound like beautiful people and such an inspiration. Good luck to you both.
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Very moving.
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