Tips, tools & skills – My Alzheimer's Story

Catherine Bixenman-salesi, who is a member of the online dementia support group USAgainstAlzheimers, is the primary care partner to her mom who lives with Alzheimer disease. Catherine regularly shares innovative, interesting and easy-to-implement “work arounds” to address the challenges she faces interacting with her mom. See more of Catherine’s tips at the end of this post.

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One thing that exhausts many dementia care partners is lack of sleep.

Long-time care partner Catherine Bixenman-salesi found a way to get more sleep every night, AND keep her mom safe and secure. Here’s what she shared with me and others in a Facebook support group:

I just figured out how to set my mother’s baby monitor alarm clock feature. Now, I can get some sleep and not worry about over sleeping when it’s time to toilet her. In the middle of the night, I can just look at the monitor to see if she is sleeping soundly. Or, if she starts to get anxious, I can talk to her using the monitor without having to get up.

When I talk to her, she sits up and listens to my voice. Sometimes I put the lullaby mode on, and she sleeps soundly. I love this gadget! I should have purchased one years ago. The camera works great. I put the monitor on my nightstand and I can watch mom from my room. I wish I had bought the monitor years ago. I spent so many nights sleeping in her room on the floor or in her bed – not to mention all the times I got up to check on her and then couldn’t go back to sleep!

The brand I have is Willcare, but there are loads of others. I chose this one because it’s simple. You plug the camera in an outlet, and you can point it where you want to see. Then plug in the monitor wherever you are. You must have WiFi (smart phone not required). It’s extremely easy to use. I can see mom on the screen. I leave it on all the time. It makes a sound when she turns or starts to move. I push a button, and i can talk to her and she can talk to me.

I bought the monitor on Amazon about a year ago, and it really has allowed me to get a few hours of uninterrupted sleep each night. I can’t tell you how many times I would get up to make sure my mother was breathing.

I read a lot of reviews, and chose one that I thought would be simple and easy to use. I don’t have a smart phone, but there are ones you could use with your phone. It can also be used unplugged for a few hours. The alarm clock can be set to ring every two, four, or six hours. I encourage all caregivers to buy one. You can find them on line here, just read the reviews, and choose one you like. I hope this tip will help someone else.

I wish I had thought of this when I was living with my mom in her own home — I might have gotten more sleep too!

hot pink duct tape solves alzheimer seating issue

turn potential dementia disasters into fun and laughter

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Care Partnering, Teepa Snow, Tips, tools & skills, Toward better care

surprising teepa care partner tip for when people keep repeating same old stories

March 13, 2019March 13, 2019 amazingsusan

Yes, it can be tiresome listening to someone who is living in the early and middle “stages” of dementia tell you the same old stories over and over again.

When you feel worn out by repetition, it can be helpful to remember these three things:

The person living with dementia is likely trying to create a connection with you through story telling. She is reaching out in one of the joyful ways she knows how: by sharing some of herself or her life.
The person living with dementia likey doesn’t remember he has told you that same story before. To him it’s fresh and new.
Storytelling, conversation and connection are great ways to preserve a sense of self and to get brain cells firing, both of which are good for the well-being of us all, including people living with dementia.

In the powerful video below, Teeepa Snow demonstrates in just a few minutes how to keep conversations going with a short and simple phrase that will create engagement instead of cutting people off and potentially creating ill will and disconnection.

Teepa’s counterintuitive tip? Say: “Tell me more…”

Teepa Snow demos 10 ways to calm a crisis with a person living with Alzheimer’s / dementia

10+ Teepa Snow videos on dementia basics

25 dementia communication quick tips in 4 minutes!

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Challenges & Solutions, Resources, Teepa Snow, Tips, tools & skills, Videos

teepa snow shows how to help someone living with dementia to put on a jacket or sweater without resistance

October 30, 2018October 31, 2018 amazingsusan

Image credit: Teepa Snow (screen shot from the video below)

“If only I had known,” is what I say to myself every time I see a Teepa Snow demo I haven’t seen before. This one was no exception when I first stumbled across it.

I had very few problems helping my mom get dressed. But how many times did I watch care workers struggle to do the same? Too many that’s how many! When I saw Teepa demo how easy it can be in the video below, I again wondered why EVERYONE who cares in some way for someone who lives with dementia isn’t trained in Teepa’s practical, positive approaches to care.

People who live with dementia “resist” receiving care for good reason: because, more often than not, we don’t know how to do things in ways that make them feel at ease.

Just watch the five-minute video below on how to help someone living with dementia put on a jacket or sweater in such a way that both care partners can feel good about what’s going on, and see if you don’t agree. I guarantee you will discover something you didn’t know or hadn’t thought of before.

Learn a few dead-easy techniques (including Teepa’s trademarked Hand Under Hand) that may help transform your life from misery to magic:

More here:

10+ Teepa Snow videos on dementia basics

Teepa Snow demos Hand Under Hand™ dementia care to connect, comfort and “control”

Teepa Snow demos 10 ways to calm a crisis with a person living with Alzheimer’s / dementia

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Care Partnering, Life & Living, Tips, tools & skills, Toward better care

what do you do to calm your loved one with alzheimer’s disease or other type of dementia?

September 28, 2018January 24, 2024 amazingsusan

Another Quora question and answer I thought it might be useful to share to help others.

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Whatever you do, don’t tell them to calm down! Everyone hates being told what to do, including people who live with dementia day in and day out.

A good strategy is to not make them feel anxious in the first place, and then you won’t have to calm them down. To do that, try my BANGS approach:

BANGS: 5 surefire ways to stop aggression before it starts

There’s a big myth out there that dementia causes the people who live with it to be anxious when it’s actually a whole bunch of other stuff that, in most cases, lies behind the words and actions they use to communicate and that those around them find challenging.

For example:

101 potential causes of behaviour by people living with dementia that institutional care staff may find challenging

Avoid noise (among other things):

loud sounds and dementia mostly don’t mix

Also, ask yourself these questions, and based on your own responses, adjust your behaviour accordingly:

20 questions that help explain why people with dementia get agitated and physically aggressive

And if you don’t manage to avoid a crisis, here’s what to do in case of one:

Teepa Snow demos 10 ways to calm a crisis with a person living with Alzheimer’s / dementia

I have 600+ posts on this blog; they include tips, tactics, strategies, lived experience, videos, audio, pics, etc. Explore! (to subscribe for free – see below)

Teepa Snow demos 10 ways to calm a crisis with a person living with Alzheimer’s / dementia

Teepa Snow demos 10 first steps to calm & comfort a distressed person living with dementia

Take my short survey on behaviour here.

Care Partnering, Life & Living, Tips, tools & skills, Toward better care

how difficult is it to support someone with alzheimer’s or another form of dementia who cannot recognize or remember you?

September 28, 2018 amazingsusan

Someone asked me this question on Quora. I thought it might be useful to share my reply here as well so others might be helped with the information.

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How difficult it is depends in large part on you, the care partner.

If a care partner is devastated and grieving over the fact the person they love who is living with dementia doesn’t recognize them, I think she or he will find it much more difficult and stressful to provide good, loving, compassionate care.

On the other hand, if the care partner can let go of his or her ego, and understand that being recognized by name or by face is really not that important, then I believe he or she will have a much easier time as a care partner. She or he will be less stressed, more relaxed, more loving and compassionate, more open to going with the flow, and more able to find joy, happiness and fun.

These two links expand on the idea:

it doesn’t matter if they know you or not

20 great questions to ask when a loved one with dementia doesn’t recognize you anymore

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Death & Dying, Life & Living, Memories, Tips, tools & skills

what do you say to people living with dementia when someone they love dies, or when they ask about someone who is dead?

July 23, 2018 amazingsusan

Online care partner groups are supportive environments where family members who care for people they love who live with dementia ask and get answers to all kinds of questions. Sometimes the questions, such as this type, are heartbreaking:

My mother has Alzheimer’s disease, and my father is terminally ill with cancer. His time is very short now — only a matter of days. I’m worried about what I should say to Mom about Dad’s death. How do we tell her about his passing? We figured we would take her to the funeral home for a private visitation, but not keep her there for the visitation or funeral. What do we do after he’s gone and she asks about him? Do we break the news to her over and over? Or keep changing the subject when he comes up?

Experienced family care partner and USAgainstAlzheimer’s FB group moderator Jessica Price-Parrott answers this kind of question with excellent advice:

“My mom and grandmother were each other’s everything. Once my grandfather died my mom was her helper, friend, caregiver, and protector. My mom lived just two blocks away and really met all of my grandmother’s needs. Fast-forward fifteen years to when my mother was diagnosed with Alzheimer’s. My grandmother watched the disease progress in my mom. My grandmother passed away first. At this time my mother was in a memory care facility. I did not take my mother to the viewing, and I did not tell her that her mother had died.

I think this is extremely situational. You really know your mother best. I chose to not tell my mom because her brain would not allow her to grieve like you or I.

I know some people who tell their loved ones with dementia and that’s that. The person who is living with dementia never asks another question about it. Others ask over and over again, and grieve every time they are told the person they love is gone.

At first I thought my mom needed to know, it was her mother, she deserved the truth, and it wasn’t fair to her for me to not be honest. The more I thought about it though, the more I felt that telling her wouldn’t be fair because her thought process wouldn’t allow her to grieve in a healthy way.

When Mom asked how her mom was I would say she was fine and well taken care of. I figured that wasn’t a lie. God was keeping her safe.

As Mom lay dying she opened her eyes and looked at me. It was then I told her that her mom was waiting for her. I smiled, and loved her. She closed her eyes, and passed away peacefully.”

My mother and grandmother were also very close. When Mom asked about her mom, or her sisters (all of whom were gone), I told her they were happy and peaceful.

Also like Jessica, I was at my mother’s side when she died. During her final hour, I repeatedly said the same thing to her: “Gran is waiting for you Mom. It’s okay to go. She’s waiting for you.”

I know Mom heard me, and I’m sure it comforted her as much as it did me.

dying with my mom

10 normal ways care partners express grief

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Image copyright: bialasiewicz / 123RF Stock Photo

Resources, Tips, tools & skills, Toward better care

hot pink duct tape solves alzheimer seating issue

June 21, 2018June 21, 2018 amazingsusan

I found this one to be particularly creative and practical; here’s a slightly edited version of what Catherine wrote in the support group update:

“I like to pass along tips I have figured out along the way; I hope others will find them helpful/useful.

I was having problems getting my mother to sit in her wheelchair. She just wouldn’t do it. Every time I would try to get her to sit, she’d have a panic attack and start screaming “no, I can’t!” while she grabbed my arms with an iron grip that caused them to be sore to the touch by the end of the day.

One evening I was sitting in the living room, looking at the wheelchair and wondering why she wouldn’t sit in it. Suddenly it occurred to me that her anxiety might be caused by the fact that the whole chair was black. “Maybe she can’t figure out where the seat is because the colour,” I thought to myself. Then I had an “Aha!” moment.

I found my daughter’s hot pink duct tape, tore off a three-inch strip, and stuck it dead center on the wheelchair seat. I thought if I used more, it would be too slippery, and as I wipe the cushion frequently, I also thought germs might adhere between the strips and the seat. Plus, a small square would be easier to remove/ replace.

I also found an old table leg and put some pink tape on the end of it. Now when I ask Mom to sit, I use the table leg as pointer. I tap the stick on the square of pink tape, and say, “Sit here, Mom.” Presto! She sits down pretty as you please. No more anxiety, no more struggle, no more sore arms!”

What a brilliant idea. Much better than saying a person is “resisting care,” or labeling her “combative” and then drugging her into compliance!

Thanks for being such a great dementia detective Catherine, for coming up with creative solutions like this one and for averting arguments by making your mom laugh. You are a care star!

turn potential dementia disasters into fun and laughter

10 ways to get to the bottom of behaviour and problematic situations in dementia care at home and in LTCFs

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Resources, Tips, tools & skills, Toward better care

5 ways to make toast in long-term dementia care

May 24, 2018November 14, 2018 amazingsusan

UK dementia care pioneer David Sheard suggests the ways people with dementia are treated in long-term care facilities may be categorized into five types. He bases his theory on a study comprising 500 audits conducted by his consultancy Dementia Care Matters in the UK.

Sheard’s five types are:

Positive social (10%)
Positive (5%)
Neutral (70%)
Negative protective (10%)
Negative restrictive abusive (5%)

He demonstrates in this telling five-minute video using the example of making toast:

Unfortunately, I witnessed lots of negative restrictive abusive “care” in Mom’s Dementia Jail. To be fair, there were some care workers who delivered what Sheard describes as positive social care, but they were by far in the minority, particularly among the nurses I’m sorry to say.

What have you seen most often in practice? Even better, what have you practiced or do you practice yourself?

painful care partner choices: love or loss (or sometimes both)?

25 dementia communication quick tips in 4 minutes!

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Image copyright: belchonock / 123RF Stock Photo

Resources, Tips, tools & skills, Toward better care

two quick dementia care conversation tips from dr. al power

April 30, 2018 amazingsusan

I highly recommend Dr. Allen Power’s two books Dementia Beyond Drugs, and Dementia Beyond Disease for care partners and care workers who want to deepen their understanding of how to best engage and support people living with dementia.

The books aren’t cheap. BUT, they are excellent value: full of real-life stories, tips, perspectives, new ways of thinking, and good, solid, practical care giving advice. I reference them all the time.

I was delighted to chat briefly with Al via Zoom about two ways to foster rich and enjoyable conversations with people living with dementia at any stage. Essentially, they boil down to: