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How I Stopped My Elderly Mother from Being Mean to me

Hello Daughterly Care Caregivers and the families of our clients living with a dementia diagnosis,

Happy New Year

Alzheimers dementia lewy body vascular elder live-in private home care

Let’s make 2018 a great year for us all and to that end I would like to introduce to you, Bob De Marco – the loving son of Dotty, who had Alzheimer’s.

Bob is an American son who gave up work to care full time for his elderly mother and shared his experience with the world via his daily blogging. His Alzheimer’s Reading Room is one of the most read blogs about dementia and it is full of practical advice.

This blog has been re-published here with Bob’s permission and at the end there is a link to his original blog. Please forgive his American spelling and his blunt and politically incorrect terms like “nutty behaviour”.

This article is well worth reading and if the advice is applied, it will reduce carer stress.

Original content the Alzheimer’s Reading Room

How I Stopped My Mother from Being Mean to Me

Alzheimer’s caregivers often feel enormous stress when their Loved One is mean to them; or engages in difficult behaviours that are hard to understand and accept.

elderly mother dementia alzheimersby Bob DeMarco

Does this person look mean to you?

The list of difficult behaviors that Alzheimer’s patients express in the mid stage of the disease are long, and sometimes never ending.

It took me 3 years to figure out how to stop my mother from being mean to me. If you read this article and follow the links that explain how I did it, you can do the same thing in a couple of hours.

I couldn’t possibly list all of the mean and nutty behaviors my mother, Dotty engaged in those first few years of our life together with Alzheimer’s. The list is just too long.

For this article I am going to focus-in on one mean behavior: when my mother repeatedly told me to get out, she didn’t need me, and she could take care of herself.

I’ll start with a few words of advice to caregivers:

alzheimers reading room elder parent

Many of you can probably imagine what it feels like when a person living with dementia tells you –

“I don’t need you, get out”.

Or, says something even worse than that.

So there I was. I had dropped out of the world to care for my elderly mother, 24 hours a day, 7 days a week, 3,112 days. Could she have said anything meaner, “I don’t need you, get out.”

It hurt.

These mean spirited episodes with my elderly mother went on for years before they stopped. However, I was never deterred by her mean spirited behavior because I made a decision from the very beginning – I am going to put a stop to this.

So I tried everything in the book. I tried being overly nice – didn’t work. I tried being overly positive – didn’t work. I tried explaining why she needed my help – didn’t work.
I told her if she didn’t start accepting my help she would end up in a “home”that did not work. In fact, it made things much worse.

I tried everything I could think of doing – it did not work.

Finally, I threw the book away and started thinking. And then it happened.

I realised something had to change, and that something was me.

Pretty simple huh? Dotty wasn’t going to change so it was up to me to change. To change the entire dynamic of our relationship.

Shortly after my realization that I had to change, I invented a new place I first called Dotty’s World.

I started asking myself – why? Why does Dotty get so upset? What is happening that is making her upset? Is it me?

Yes, it was me. Okay, we had that out of the way. It was me.

Eventually I changed the name of our new world to Alzheimer’s World.

Alzheimer’s World was the place I would go to, to better understand Dotty and to better understand me.

At first, I found that it was difficult to change gears and get into Alzheimer’s World. So, I actually started taking a giant step to the left when I needed to enter Alzheimer’s World.

To be honest, I couldn’t get there without the step to the left. Just couldn’t.

Next, I started taking notes in a spiral notebook. Every time Dotty would get mean I would write down what was happening before these episodes.

One thing stood out. Every time I left Dotty alone, shortly thereafter, she would get mean.

“Get out, I don’t need you, I can take care of myself”.

It became obvious to me that I couldn’t leave Dotty alone. I couldn’t leave her alone for 30 minutes to go to the store. Or, for any other reason. This is pretty common in mid to later stage Alzheimer’s. A person who is deeply forgetful cannot be left alone.

Yes, there were other cataylsts to this mean spirited and often bizarre and crazy behavior.

For example, if I would tell Dotty you can’t do that. Or, if I would correct her and try to explain the errors in her thinking. Or, even if I would stop her from doing something.

Once I made it to Alzheimer’s World I started looking at the world from Dotty’s point of view.

I looked at the world from her eyes.

Pretty soon I realized that the things that Dotty would do seemed very normal to her. I just looked at her while she did them and pretty much kept my mouth shut.

Pretty quickly, almost overnight in fact, I accepted that the things Dotty did were normal in Alzheimer’s World. So, I stepped to the left to better understand. Amazingly, the amount of stress I was feeling diminished – it happened immediately.

In Alzheimer’s World instead of getting all bent out of shape, I found myself marveling at the things Dotty would do. The things that Alzheimer’s patients do are often fascinating. After all, their brain works differently than yours and mine. You have to start understanding the brain on Alzheimer’s.

Now to my first major point. When Dotty said,

“Get out, I don’t need you, I can take care of myself”

that is not what she meant. What she did mean is:

Don’t leave me alone, I’m scared, please don’t put me away in a home.
Yep, she was scared and, like it or not, I was the one causing the fear when I left her alone.

Simple solution, I stopped leaving her alone.

Once I realized that there was a very different meaning to Dotty’s words in Alzheimer’s World, I was able to develop better and better solutions to problems.

In this case, I didn’t leave Dotty alone. But that is not all that I did. When she said “get out”, instead of getting all bent out of shape and reacting back at her, I did the exact opposite. What did I do?

I smiled, walked over to her, put my arm around her, and calmly said, in a clear, low, confident voice,

I’m not going anywhere, we are here together now, and I am going to take care of you.

It took a while, but yes, it finally sunk into her brain.

Alzheimer’s World is wild, sometimes crazy, a backwards place. I learned that in Alzheimer’s World words from an Alzheimer’s patient are often a cry for help. Many times what an Alzheimer’s patient says is exactly the opposite of what they mean.

So I started meeting meanness with an equal and opposite reaction – kindness.

Kindness, compassion, and understanding.

This is how you learn to cope with Alzheimer’s. Understand, cope, communicate.

By the way, Dotty stopped telling me to get out.

The few times she did tell me to get out I actually laughed. This helped me to realize how far I had come as a caregiver. Instead of enormous stress, I felt calm and comfortable.

If you follow the links in this article you will learn many of the lessons I learned over several years. The good news, it won’t take you years, it won’t even take days.

Once you incorporate these ideas into your life you will find that many of the things that are driving you crazy are normal in Alzheimer’s World. The amount of stress you are feeling will be greatly diminished by your new understanding of your loved one.

Here is the best part. Your loved one will begin to cooperate. So instead of feeling like they are the enemy, you will start to become good friends.

The bottom line – it is up to you.

Wouldn’t you rather live a more happy life while caring? Wouldn’t you like to bring the highest quality of life possible to your loved one?

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What do you think – was this blog helpful for you?

Leave a comment below.  Also perhaps you could share how you cope with being told to get out or other hurtful comments.

Daughterly Care CEO Kate Lambert elder care northern beaches

Kate Lambert
B.Ec F.Fin

Daughterly Care CEO & Co-Founder

Learn More from Bob:

Alzheimer’s Care, Acceptance, Recognition, Change, and Life

Communicating in Alzheimer’s World

Did You Know Dementia Patients Get Agitated When Left Alone?

The Importance of Touch and Kindness in Dementia Care

Coping with Dementia

10 Things a Person Living with Dementia Would Tell You If They Could

Definitions:

Cope. To face and deal with responsibilities, problems, or difficulties in an effective and calm manner or way.

Coping requires us to make our own conscious effort to solve personal and interpersonal problems. This allows us to minimize stress, reduce conflict, and to better understand our situation.

Emotional super glue a bond that holds two people together and rises to a level that is so powerful, so all encompassing, that it can only be described in this way – you are bonded together by emotional super glue.

Caregiver is a person who gives help and protection to someone who is sick or in need.

Empathy the ability to understand and share the feelings of another.

Compassion a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate their suffering.

Dementia care is the art of looking after and providing for the needs of a person living with Alzheimer’s disease or a related dementia.

Flexibility the willingness to change or compromise.

Anger is a normal, sometimes healthy, human emotion. However, when it gets out of control and turns destructive, it can lead to a deterioration in personal relationships and a reduction in the quality of life.

Loneliness often occurs in Alzheimer’s and dementia care because our family and friends abandon us.

Bob DeMarco is the Founder of the Alzheimer’s Reading Room (ARR).

The Alzheimer’s Reading Room contains more than 5,000 articles and has been published daily since July, 2009.
Labels: alzheimers care , alzheimers meanness , alzheimers stress , coping with dementia , dementia care , dementia care at home , mean

Are your elderly parents coping? – 20 warning signs to watch for

This Festive Season Busy Adult Children will Discover their Elderly Parents are not Coping

When busy adult children spend extended time with their elderly parents this Christmas and New Year Season they may notice that their parents’ quality of life has declined and frankly, they need a little help.

It may come as a shock to recognise elderly parents are not coping the way they used to. As families grow and move interstate or further apart, it’s at the family gatherings like the festive season when we get together and spend time with each other that we are more likely to realise the differences in elderly parent’s appearance, responsiveness, demeanour, mobility, behaviour and tiredness.

Are these little changes that indicate age is being kind to them or are these warning signs that are showing a decline with Elderly Parent’s health?

Here are some signs to watch out for with older people (parents, siblings, friends, neighbours) that can indicate they are not coping as well as they have done before:

business owner adult children elderly parent private home care package
  • Medication not being taken?
    You can see from the Webster-pak that your parent is not taking their medication, or taking it sporadically.

  • Unexpected disorder in their home?
    Your house proud parents are not keeping up. Old, off food in the fridge.

  • Personal hygiene has slipped?
    Dirty clothing being worn. Your parent isn’t maintaining personal hygiene and this is new.

  • Forgetfulness, Confusion?
    You can now see that forgetfulness is impacting your parent’s quality of life.

  • Possible Depression?
    Your normally alert and happy parent is noticeably ‘down’.

The 5 alerts to be aware of, as mentioned above are the major areas of concern that show prospective signs an elderly parent is struggling to cope with daily life that you can check on during this busy festive season.

Additionally, there are a number of other indicators you may not be on the lookout for, that your elderly parent is battling with tasks and chores that used to be easily undertaken by them.

20 Warning signs elderly parents are struggling to cope

  • Letter box is full or hasn’t been checked regularly.
  • Utility bills have not been opened or paid on time.
  • Dates are being forgotten and appointments have been missed with doctors, friends, family or services.
  • Meal are being skipped altogether as snacks are substituted for proper breakfasts, lunches, dinners.
  • Bins are full and not being emptied or the garbage has not been put out for collection or brought in.
  • Observe elderly parent’s mobility, rising from seated, sitting down, walking, climbing stairs and steps.
  • Changes to weight as parent’s not eating regularly.
  • Routine kitchen tasks are approached with confusion, or delays in coordination and forgetfulness.
  • Additional naps, siestas, or sleeps during the day that can alter night time sleeping habits.
  • Aids left around house to assist walking, resting, leaning against between rooms.
  • New wounds, scrapes, bruises and injuries incurred from knocking into things.
  • Loss of items dentures, glasses, dog lead, phone, keys.
  • Unawareness of date or time.
  • As tasks take longer, owing to arthritis or diminished dexterity, meetings take longer to prepare for.
  • Different clothing choices; pull on shoes, no buttons, no zips, as it’s easier to wear slip on clothes.
  • Behavioural changes; upsets and mood swings.
  • Kitchen fridge not well stocked, bathroom not kept clean and laundry piled high.
  • Are your elderly parents aware they get assistance in the home for just a couple of hours?
  • Withdrawal from usual activities owing to feelings of anxiety, or self protection.
  • Front doors and back doors left open on unlocked at night, lights being left why? windows left wide open?

In home care keeps Elders living safely and happily at home for life

In-home care solves many challenges Elders face. Our lovely experienced in-home caregivers can pop-in and spend 2 or more hours, provide over-night care or even around the clock, 24 live in care with your parent while you are working, travelling or busy with your children or grandchildren.

To book a couple of hours in-home care call our office on 9970 7333. We’re on-call 24 hours, 7 days a weeks after business hours for emergencies.

We hope you have a very Merry Christmas and wish you a Safe and Joyful New Year.

To book a couple of hours in-home care call
Tel: 9970 7333

Kate Lambert CEO and Co-founder Daughterly Care Sydney's North shore Northern beaches

Kate Lambert
B.Ec F.Fin

Daughterly Care CEO & Co-Founder

Drawing back the veil over Mr Hyde – Experiencing the emotional side of Dementia

With Christmas and New Year approaching, I thought you might benefit from meeting an Englishman from Shropshire, George Rook who was 63 when he was diagnosed with Vascular Dementia and Alzheimer’s young onset dementia. People with young onset dementia tend to be diagnosed much earlier in the disease and therefore have many more years of being able to express themselves well compared to older people who slip into dementia, often without diagnosis until much later in the disease.

George first started writing about his dementia online in August 2014 when he was 63.

When someone with young onset dementia like George, shares their experiences and feelings they are giving us some insight into the experiences and feelings of all the people living with a dementia, regardless of their age.

George wrote the blog below last week to express how he was feeling as he approaches this busy, noisy, celebratory time of year and after he and his wife recently had guests stay for 3 nights. George gave permission for Daughterly Care to re-publish his blog below.

As you rush towards Christmas trying to make everything perfect and perhaps feeling stressed because it isn’t perfect, just breathe deeply and remember, the most precious gift you can give is your happy, relaxed self.

Just ‘happily and calmly enjoying your family’ is perfect and enough

  • Holding your Mother’s hand while watching the Carols by Candlelight Christmas Eve and singing along with her is a wonderful gift of unconditional love. Even better if the grandchildren can be there too and sing along. When you are singing Christmas Carols with your family you don’t have a dementia – you are just enjoying Christmas with your family.
  • Watching the cricket and having a beer with your Dad is a wonderful gift of unconditional love. When you are talking about cricket with your family, you don’t have a dementia – you are just enjoying a favourite past time.
  • Going for a walk along the beach as an extended family is a gift to your parents as they enjoy nature and watching their grandchildren run and skip to meet the incoming waves and then run away.

Forgive all imperfection and just be, moment after moment. Wishing you a Merry Christmas and a Happy  New Year.

Reprinted with George Rook’s permission, here is his most recent blog:

Drawing back the veil over Mr Hyde

I wrote this yesterday and have been wondering whether to publish it. It sounds as if I am terribly depressed, but that’s not it. It is a tale of two halves, growing further apart. And of bereavement…

https://georgerook51.files.wordpress.com/2017/12/bc9b6263-995a-4bf6-b7c5-126b31b82403.jpeg?w=260&h=300

I’ve got brain disease, I’m told.

My symptoms are described together as a dementia. Well, mixed dementia actually, labelled Alzheimers and Vascular.

You meet me at a conference or a small meeting and you probably think “really?”.

Like many others, I can focus my brain on the matters in hand, as long as I have prepared. And as long as I am not tired.

So I’m a cheerful chap to most people, talking cheerfully about living with dementia, smiling away, saying hello to everyone around.

And I do really enjoy doing that. I get immeasurable satisfaction and pleasure from giving talks, chairing meetings, and just being around positive people who also want to make a difference.

But you don’t see me at home.

I’m reminded of the Chris and Jane Roberts Panorama film. You meet Chris, when he’s at an event, or over supper afterwards (curiously often in Weatherspoons), and he’s also cheerful, and talkative. But at home we all saw how he is different.

When I go home I’m also different. And in the last couple of months I have become aware that my symptoms have become more socially isolating.

I can’t do noise, and my lovely Lupin’s barking really crashes my head at times. It is overwhelming. Add another dog or two when friends come, thrashing playfully around, under my feet when I’m cooking, and I just can’t stand it. So I shout. And use foul language.

Well I’ve always had a colourful vocabulary, but I’m far less able to control it in social situations now. It’s like before I started Donepezil, three years ago. That made a huge difference, and I took back control of my self control. Now though it seems to be going again.

In a meeting when someone is speaking off the subject, or telling me things I already know, or just being really boring, I get intensely irritated and impatient. I start slapping my hand on the table. I want to shout at them. I haven’t got time to listen to you if you can’t do a decent presentation, or have nothing interesting to say.

And so, at home, I find suggestions about how I might do something, like cooking, or hoovering, or some other mundane thing, intensely annoying. I feel, often wrongly, that I’m being criticised, and not being allowed to be who I am, and make my own decisions. And I shout sometimes, and I upset others around me.

I know some good friends who came to stay a couple of months ago found me difficult to relax with, and it’s taken me all this time to really understand why.

Why, indeed, would people want to come and spend time with a miserable, angry, foul-mouthed person? Even friends have their limits!

I am seriously impatient at home. If, for example, I can’t get my walking boots laced up at the first attempt, I just lose my temper. I shout. I’m furious.

I have simply lost whatever it is in my brain that is the dam holding back that fury, and it explodes out.

https://georgerook51.files.wordpress.com/2017/12/a79d69dc-2ff5-4d8a-868b-42d37352bfd3.jpeg?w=300&h=199

So here comes Christmas. Lah de dah.

Four days with family…and I do love them all and love to see them. I’ll want to cook, because I enjoy doing that. But only if no one interferes at all. And by the time I get to the table I’ll be tired and fractious, especially if guests aren’t all sitting ready as I serve. And I’ll sour the general spirits.

Perhaps I should simply go into another room and preserve my energy and state of mind. Keep out of the way.

I’m not the person I once was, and it’s hard to accept.

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I am writing all this not out of a sense of self-pity, but because I am certain that there are lots more people who have the same sort of experiences and difficulties.

And most people don’t know. I live by the rule that if I experience or feel something, it’s pretty certain that other people do too.

It’s not just Christmas, though this season does adversely impact many of us. It goes on and on. We get tired. We feel we have to go on smiling and ignoring our inner feelings of frustration and helplessness, as we watch others do what we used to do seamlessly.

The best social events now are short and small and quiet. I’m only now beginning to understand the need for that quiet room at good conferences, where you can just sit and be…quiet.

I don’t know about others, but I feel huge pressure to be cheerful and chatty when friends and family are around, even when I am not feeling like it. I’m afraid that if I’m miserable they won’t want to come back again. I’ll be just a person whom they’d prefer to avoid.

There is this conflict: is it my responsibility to take whatever actions or strategies I need to in order to be nice, cheerful George, or is it other people’s responsibility to change how they behave and what they do, to help me retain my self?

When I visit my GP I usually become cheerful George again. It’s as if I feel I have to cheer him up, and not load him up with my difficulties. How stupid is that?

In any case, a GP is not the right person for this type of conversation. An Admiral Nurse, yes. But, of course, we don’t have them here! A counsellor? Nah.

What about the memory service people? Their risk aversion is stifling.

I have a terrible distrust of most health professionals I meet. They may know their professional medical stuff, but they really don’t get dementia and its effects on people. So if I get invited to an annual health review, do I go? No. Because it’ll be a practice nurse who has no idea about dementia and who will simply say let’s do a blood test. Oh and you know about diet and alcohol so I don’t need to tell you that!

It has happened several times. So I don’t have any real faith left there.

I’ll go on with my thoughts and conversations with myself, and try to work through these things. It’s a lonely place at times, and it’s going to get worse.

And I’ll continue in January to give talks and go to meetings, and organise DEEP groups.

Because that’s what makes life worthwhile at the moment.

In the next three weeks I’ll have time to reflect and recharge. And maybe I’ll be able to draw the veil across on Mr Hyde once again.

You can read George’s blog; George Rook living with dementia as well as I can.