“MUM’S LOSING IT”
It was my husband who first picked it up.
“Mum’s losing it,” he said to me one day as we were driving home from a visit with his parents, Mavis and Stan.
“She told me the same story twice in an hour. She forgot Declan’s name.”
Though I’ve worked for the past 15 years as a neuropsychologist specialising in the diagnosis of dementia I brushed off his concerns.
“She’s just getting old,” I replied.
Mavis was 80, after all, and led a busy life with lots of friends – it was no surprise that she couldn’t remember who she’d told what. Besides, in the 20 or so years that I’d known her she had always called my husband PeterGregoryCraig, working through her two older sons until she got to him. She was just repeating the pattern with her first grandchild.
“No, it’s more than that,” Craig said, shaking his head. “Something’s not right.”
Fast forward eighteen months, and Craig was proved correct.
The four of us – Craig and I, and our children Declan and Cameron – had relocated to Broome for a year, and when we returned the Mavis that we knew had gone. She still looked much the same, her face still lit up when she saw us, but after the greetings were over she had nothing more to give.
No questions, no conversation. She sat in her chair, blue eyes blank, her gaze straying vacantly to the intricate porcelain dolls she had made all her life arrayed on the mantelpiece while Declan and Cameron chattered away and tried to engage her.
Six months earlier she had been diagnosed with Alzheimer’s disease.
She lasted another year at home before the phone calls began. From the neighbours, alerting us to the fact that Mavis was wandering the street barefoot and in her nightie. From her best friend Valda, laughing at how Mavis had removed her incontinence undies and kicked them under the table when Valda had taken her out to lunch. From the care workers, complaining that there was faeces all over the kitchen and bathroom floor when they arrived to take her shopping.
Though still physically and mentally well himself, Stan was marooned in his armchair, unable to care for her, torpedoed by depression. I Googled “residential care + Melbourne”, and the search began.
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38 Responses to this article
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Anna June 26, 2012
Having lived through my own Mother having Alzheimers I totally understand and appreciate you writing this article. Thank you. Anna
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Mark Leveson June 26, 2012
Sadly, my poor dad also suffered dementia. My elderly mum tried to care for him at home. Mum’s own doctor pulled me aside and helped me convince mum that dad needed professional care. He was dragging her health down too. So sad to say but it was a blessing that dad passed soon after going into a wonderful home. He had really died many years earlier.
Such a cruel condition. Nice story. -
Kerri Sackville June 26, 2012
My nana had Alzheimers and it is so devastating. What a beautiful piece Kylie. It sums up the hopelessness and heartbreak. You’ve been a wonderful daughter-in-law.
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Cate P June 26, 2012
Beautifully written. Having gone through the whole heartbreak of aged care placement twice within a year for both my parents and MIL (not because of Alzheimers but different reasons) I feel your pain. It isn’t nice.
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kim at allconsuming June 26, 2012
Heart.Breaking.
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James Tierney June 26, 2012
Beautiful, heart-tearing piece, Kylie.
You took care – that’s all anyone could ask. -
Mary333 June 26, 2012
A very sad piece and a situation I dread with a mother who has recently been diagnosed with Alzheimer’s.
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JessB June 26, 2012
I am getting a little bit teary reading this. I am anticipating that in the next five years my Granny will have to have some kind of assistance, as her sight is going, but I dread the day when she will have to leave the family home for a home of another sort.
Kylie, it seems to me that you acted with love and compassion – no-one could ask for more. Beautifully written, thank you for sharing.
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Lauretta June 26, 2012
I had a very similar experience with my mother. The hardest part by far was closing the door on her after we first admitted her into nursing care. The article captures these hearbreaking moments really well. We all have to stay strong for our loved ones.
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Kris June 26, 2012
I have had to do with this both Nan & Pop. Pop is gone now & Nan is close to the end. The staff have been wonderful – lovely & caring, but it is still hard. I am nearing having to make this decision about Dad & can only hope that i can find an equally good place for him. It doesn’t make it any easier to do, but knowing they are well cared for does make it easier to bear.
Thank you for sharing your story Kylie.
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Sophie June 26, 2012
Alzheimers is such a cruel disease. My grandmother was diagnosed with it when she was only 58 years old – her own parents outlived her.
My family were able to get her into a good nursing home, but it was still heartbreaking. Looking back, I think my parents handled it amazingly well. They were always kind without being condescending and managed to keep it together in front of my grandmother and us kids.
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Meg June 26, 2012
Kylie, thanks for sharing. This is such a painful illness for those around the person. I know that when we did this with Matt’s Gran, we felt like we were ripping a great love apart. Until she died, she packed her bag every day waiting for her love to pick her up. The staff would help her unpack them when she decided that he ‘got caught up’.
It was like watching the light go out. I went from someone she knew to ‘nice lady’ and my boys to ’3 lovely girls’ (they did have long hair). It was desperately sad. The only thing that got us through it was knowing that the staff were caring for her properly. A horrible illness.
Thanks for sharing. -
Benison O'Reilly June 26, 2012
I expect this scene is not too far in the horizon in my extended family, too.
Horrible situation, K, but from what I’ve observed the cognitive decline your MIL as undergone almost acts as a protective device – for her at least, not her poor family.
I was frightened how un-upset my relatives with dementia were when one of their closest friends died suddenly. It was as if they’d lost their ability to ‘feel’ strongly. I can see why it’s sometimes called the second childhood
Of course, these are just my observations. Correct me if I’m wrong – you’re the expert. xx
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Mez June 26, 2012
I’m coming from a naive place as I’ve never been a carer for an elderly relative but I have to ask, with all respect, why we have to put our family in care.
I guess this is another life situation that will smack me over the head and make me me wonder what I was thinking, but I hope I have it in me to care for my mother in her own home or mine.
Is the rise in the number of elderly in care a direct correlation to the number of women now in the workforce?
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Alicia June 26, 2012
Tears. For you and your family. For Mavis. For Stan. And for everyone dealing with this now…or soon. Beautiful piece.
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bigwords June 26, 2012
How devastating. XX
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Lisa Frankel June 26, 2012
What a beautiful well written piece, I struggled to finish it and see properly as I cried my eyes out – in fact I got to the last line adn I put my head down and bawled… I couldn’t imagine sleeping alone after so much time and I know in my heart of hearts that Mavis is reliving her life as she closes her eyes each night, it’s sad that this happens to people and I feel for you and your family… I kind of went through the same thing when my Pop had cancer – he lost his short term memory (Brain tumor) but still had his long term memory, he knew he had grandkids and I went to see him by myself one day and he was talking away and then he looked at me and said it’s nice of you to vollunteer your time and visit us old folks, I have a grand daughter about your age and I’m so proud of her she is going to be a teacher when she gets older and she’s going to go to uni. I had to look away as the he was speaking of me but didn’t know who I was, I never went back – I said my goodbye’s that day and have a memory of Pop looking out the window from his room and waving at me with a smile on my face as I left…. wish that these things never happened…
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Siham Owen June 26, 2012
I don’t think I can bare to put either parent in a nursing home I don’t think I could cope…
Kylie your article bought tears to my eyes, life is bitter sweet -
Kylie L June 26, 2012
Thanks everyone for your comments so far- I’m heartened and touched by the support and understanding. It means a lot.
Mez, I think you’re probably onto something re women working and fewer elderly being cared for at home. I work part-time, which would have made caring for my ML at our home very difficult, but even if I was home full time I’ll be honest and say I don’t think I’d be up to it. Mavis- my lovely, sweet, always immaculately dressed MIL- now hides food and faeces in cupboards, shoes, handbags. She moves things around (the phone, keys) and hides those too. She has a sleep cycle disruption (not uncommon in her stage of AD) which mean she is up wandering the house half the night and waking everyone else up- she has no idea of boundaries and not to disturb others anymore. She escapes and walks around the neighbourhood half naked or stands banging on the door for hours when she can’t get out. She can’t eat without making more mess than a toddler. She is doubly incontinent and needs regular showering and changing. We tried (paid for) almost full time care for her at her home, and it didn’t work. I can’t do all that either- and I can’t do it to, and at the expense of, my kids. I admire unreservedly anyone who can. If she had cancer it would be different, but dementia is a different, horrible, unrelenting beast.
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Pamsiwamsie March 8, 2013
You are so right. My husband has had to go to full time care after me caring for him 24/7 for 6 years. It was a no brainer when he lost all control of bowels, with huge cleanups about 6 x a day. This has been the hardest decision in my life. I visit him daily. Am there at 9.45 a.m. and leave at 4.45 p.m. Never miss a day. He keeps asking why I can’t jump into the one single bed with him and stay the night. He has dementia but not that bad that he does not understand these things. Its the physical I can no longer cope with. He is 6 ft 1, I am 4 ft 11. He is phsically unable to stand without help, I had no choice. Boy do I hate myself. Everyone says I have to stop going in every day. I won’t do this. He is 84 I am 76, and while I can, I will spend every waking day with him, just to see his beautiful smile when I walk in the door. His care is 5*. Have no complaints. Well done, Merrimac Park Private, Gold Coast Australia.
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DK June 26, 2012
I would like to respond to Mez, above, who asked why we have to put our family members into care. Mez you asked with respect and I will try to answer with respect, but I hope you will excuse me if I appear defensive or emotional. I have been asked this question before, by others, judgementally and with little respect. Everyone knows about the forgetfulness and befuddlement of dementia conditions, many are aware of the incontinence and increasing inability to manage basic hygiene functions, to shower, dress, clean teeth and brush hair. I found not as many were aware that dementia patients gradually forget how to eat and drink. What I learned was few people who have not ” been there ” (and indeed it is not the same for all victims of this disease) realise how hard it is to manage all these issues on almost no sleep, within a similarly sleep-deprived family, because the patient sleeps so little. As my mother’s dementia progressed, she slept less and less. She did not like to be without my father at any time, so he got little sleep also, and this affected his health. She could not bear him to be out of her sight during the daytime either. He dared not take more than a few minutes to shower. He mowed the lawn in small sections. ( no, she couldnt go outside and watch him, the noise upset her) . He could not go for a walk. Or get his haircut or see the doctor without a major upset. She would wander the house at night and, convinced that we wanted her locked up ( well, she was right, we certainly did not want her wandering the streets ) she would try to find ways to escape the locked doors. You would be surprised how strong and resourceful dementia patients can be when they are determined on something. When we visited, or when we had her at our home to stay, no one got enough sleep. She would enter all the rooms and wake whoever was sleeping, my father, my husband, my sons. Teenage boys need their sleep. She didn’t turn away from locked doors (yes, fire hazard, but what do you do?) they enraged her. It took a huge toll on everyone. My father was her primary carer. I am an only child. There was no other family to “trade shifts” with. At one time, my father had to go interstate to visit another relative. I encouraged him to go, he badly needed some respite. It was hard coping with mum at first, she was convinced he’d gone off with ” another woman” t first, but rapidly got harder when my mother became ill (I’ll spare you the details) and had to be hospitalised and have her symptoms investigated with scans and tests and MRIs, none of which she understood or was disposed to cooperate with. I had to stay in the hospital with her, or they would have had to restrain her. One day I took a break to go home and collect my kids from school and try to talk to them reassuringly about the scary stuff that was happening with Nanna and try to recharge with a little nap and came back to find her with the sides up and strapped to the bed. Wristbands, tethered to the bed. I DO NOT BLAME THE NURSES, let me make that clear. I know what Mum was like. Except, it wasn’t really Mum, it was the Dementia. So I stayed, and she stayed awake and sometime in the early hours of one morning I begged the staff to give her something to allow her (and me) to sleep for a while. Then I was lectured as to the absolute inadvisability of giving drugs for our own convenience, just to shut someone up. It wouldn’t be real sleep, they explained. She wouldn’t awake rested, it might make things worse, I should go home for a while, they said. I reminded them that last time I left her alone they had to restrain her…at last she dozed, My choice? Doze or go to the toilet? When I returned my mother was awake and accused me of leaving her alone for “hours”. I’ll let you imagine the state I was in. All this happened in what we think of now as the “early days” – it was over three years before Mum went into a nursing home, where she was well cared for ( as opposed to the “care” she received during several hospital stays, but that is another story). To sum it up, there are many, many reasons why a decision for institutional care is made and these vary from family to family and patient to patient. I havent given the full picture here, just one small facet. But one reason is that sometimes for everyone’s health and safety’s sake, you really need a night shift. Someone reading this is going to be itching to say “but why didn’t you…….” or ” I couldn’t do that, I would be prepared to sacrifice anything to keep my mother at home.” and lay on the guilt trip. Please think twice. For privacy’s sake, I have only scratched the surface of our family’s story. As I said at the beginning, Mez asked with respect why these decisions are made, I hope that my response will be treated with respect.
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The Huntress June 26, 2012
@DK
In sharing your story you can help people who have never been there try to understand – and hopefully realise that putting a loved one into care is never an easy decision. Indeed it is usually a last resort, after all other possibilities explored and much damage has already been done to the family structure and personal relationships. I am so sorry you had to go through such difficult times, it is so hard to care for someone with dementia and you have my upmost respect for not only being so strong, but for the respect you have in handling questions from others. I wish you and your family all the best in your future.
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librarygirl June 26, 2012
This was hard to read – my Dad spent the last nine months of his life in a nursing home, bed ridden, after a stroke, which catapulted into the dementia which was already taking hold of him.
DK, my utmost sympathy to you.
Only someone who has been through this with a parent, and has had to be the decision maker about their care, would ever understand how heartbreaking it is. My Dad’s nursing home was homey, not fancy, public, spotlessly clean and had the most wonderful staff you can imagine. -
RobynMarie June 26, 2012
Mez, there but for the grace of god go I. Pray you are never in this situation. Putting my mum into care was the hardest thing I ever had to do, including IVF (unsuccessful). You cannot begin to imagine how hard it is, Kylie, my heart goes out to you. Please be kind to yourself.
Much Love -
Astrid June 26, 2012
My mother developed dementia at a much younger age than normal. She was living in a different state and we had not been talking for many years. I had a young baby and no money. So not only did we choose to put her in care, but we also had to hand over guardianship to the government (can’t remember what dept) do ensure that her going into a nursing home was as quick and efficient as possible.
It is not an easy decision and thank those here who have shared stories of caring for parents, as it gives me some comfort that we made the right decision.We were questioned a lot about why don’t we take her in, get her into a nursing home near us so we could visit. Her condition was as such that even phone calls from us would upset her and us, as she would demand we get her out of there. She was happy though, it was just the reminders from her past that made her unhappy, so we had to stop the phone calls.
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Nicole H. June 26, 2012
Kylie – such a beautiful piece. You put me right back to a time when I had to go through a similar thing with my father. His Parkinsons rapidly deteriorated into dementia within a couple of years of diagnosis. Terrible, heartbreaking, and cruel. The moments my dad knew what was happening were the worst. When he’d ask me how I could leave him there like that. Or when he was gone again, and he’d ask me, so politely, like the stranger he believed himself to be. if I could please take him to the nearest train station. Or bus stop. He didn’t want to be any trouble, but if I could just drop him home on the way…
It’s a kind of death, but one that happens over and over, every time they come in and out of awareness, the grieving starts all over again. Still breaks my heart to remember, and it’s been more than 18 years.
My best to your family at this difficult time. xxxx
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HW June 26, 2012
DK, I could hardly see the words of your story through my tears. It has brought back so many memories. Only people who have been in this situation will understand. My mother was diagnosed with Alzheimers when she was 57 years of age, I was 21. She was put into respite care to give my father a well earned break when I was pregnant with my first child, she never returned home. She was assessed by the nursing home and the decision was made for her to stay. It was a heartbreaking decision. After spending more than 5 years in the nursing home she passed away aged 67. The nurses always maintained that she knew what was going on around her, I couldn’t imagine anything worse than being trapped in a body unable to communicate to those around you. I pray there will be a cure to stem the flow of so many dementia patients into care, in a world where we have so many medical advancements that allow us to live a long and otherwise healthy life.
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Ms Magoo June 26, 2012
A beautiful piece about a heartrending topic. Nobody could deal with this sort of thing with care at home. My heart goes out to all of you who did as much as you could, and then had to make the difficult decision about finding a nursing home. What else could you do? I went through a lot when my parents were ill and when they died, but nothing like this. My sympathy to all of you.
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Kelly Exeter June 26, 2012
Oh Kylie, I knew this was all going on via twitter but it is even more heartrending reading it here. So much love to you guys right now.
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Lizabelle June 26, 2012
It is so, so tough to lose someone while they are still there in body – perhaps especially when the real person resurfaces from time to time. Thank you for writing this, Kylie, and my thoughts are with you and your husband, as well as with Mavis.
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Lucy June 27, 2012
That’s so succinctly written. It really gets to the point and cuts through the incidentals. I would be interested in reading further thoughts you have, Like what there is of remaining personality, the rapidity of change and what you think your mother-in-law’s reality is now. My own mother in law has all kinds of theory’s of dementia that may or may not be based on truth, like “mostly really smart people get it”? Plus I have heard that they get violent. It’s very interesting subject. I wish there was more commentary on it. Did you see Louis Theroux’s ‘Extreem Love’ episode on dementia? or read Alan Bennet’s ‘The Lady in the Van’? I am interested in knowing whether we can give set responses that can get through to them or at least create an sense of calm. I know that music from when they were young can create joy. It must be very scary for the person who has the disease. There must be ways that we can make them feel safe. It’s like a puzzle. Thanks for writing, Lucy
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Bern Morley June 27, 2012
Oh Kylie.
“Two decades earlier she had welcomed me into her home. Now I was signing the forms that would remove her from it forever.”
Much love xx
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Seana Smith June 28, 2012
I hope someone as kind as you, Kylie, will be taking care of me when I am very old.
Dementia is so sad, and your last lines have floored me.Wouldn’t it be lovely if husbands and wives could go together into care (or some sort of arrangement) so that neither would have to be alone.
My old Dad had dementia, but was still at home, and it was self-induced, he was still drinking and quite oblivious in his oblivion. He died in a fall, those of us who loved him knew it was a blessing.
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Rose May 4, 2013
I am crying as I read. I don’t think I will ever get over the guilt I felt at putting my mum, with Alzheimer’s into care. It is, as many of you have already said, the only option in some situations. Even if I had given up work, I don’t think I could have coped with the relentless demands caring for Mum would have entailed. My brother and I would take Mum for a day each on the weekends because she enjoyed the outing so much and loved her granddaughters dearly (always knew them, even if she couldn’t always name them). Towards the end of 4 years in care even that became too difficult. My heart goes out to any of you dealing with the same situation. People judge families harshly for putting relatives into care only because they have no idea of the implications of Alzheimer’s. Open discussions like the ones above may give people an inkling. Greater awareness may eventually lead to better services and support for suffers and their families.
