Care Partnering, Challenges & Solutions, Life & Living, Real life

7 simple dementia care partner needs

I asked the care partners in one of the Facebook groups I belong to a simple question:

What would help reduce your stress, improve your ability to provide care to your person living with dementia and make your life and their life easier?

It turns out they don’t need anything extraordinary in the whole scheme of things. Simple stuff is what they need. Most of all, they need help and support. They need friends and family to chip in. They also said they don’t want to be alone, forgotten, isolated or destitute. It’s not complicated.

Here’s a sample from the answers I got:

Someone who is trained AND totally understands dementia to stay with my dad from time to time.

Someone I trust to agree a regular standing arrangement to come over and stay with Mom so my husband and I can get away and have some sort of love life. Even if only for a weekend.

His family and friends to come and see him or at least to call him like they use to.

Some way of reducing the isolation in my life, so that I could spend some time in the real world with real, not invisible, people.

Short list: One person that I could call and say “I need help with mom” and they would come. No explanation needed. Nobody wants to beg for help. Visitors to improve her mood, a much needed break at least once a week.

Affordable care of any kind would help. Friends and family who don’t toss me, the caregiver, by the wayside. Perspectives on communication or how to communicate with a loved one who does not listen, does not pay attention, and does not think about what they are doing. I’ve tried signs, alarms, phone reminders. Someone to talk to that will just let me talk or vent. The isolation is unnerving.

A thank you now and again. From anyone. Anyone at all.

Are you the “someone” a dementia care partner somewhere needs? If you can help, even a little bit, please do.

Thank you.

Subscribe to my stories and blog posts here.

Image copyright: bradcalkins / 123RF Stock Photo

Advocacy, Annie & Cricket, Antipsychotic drugs, NHBPS

save our souls and help us please

save our souls and help us please

This is the fourth in a series of vignettes based on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia.

The first vignette is here; it provides background to this series, which also includes:

The vignettes are told from the point of view and in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’s type in the mid- to later-stages of the disease. Annie resides in a long-term care facility somewhere in Canada.

This vignette is entitled “save our souls.”


Teepa thin banner

save our souls

I feel so lonely in this place full of strangers. I don’t understand how or why I’m here, or when I’ll be able to leave. I keep telling people I want to go home.

“This is your home now,” they say, or: “We’ll go this afternoon, or tomorrow, or next week,” they say. But they don’t take me. They don’t believe me when I tell them this is not my home. I miss Mummy, and my dad. I miss my sisters. Where is everybody? I feel so sad and lonely. I sit here waiting. Watching. An old lady in a wheelchair rolls down the hall. It takes her long time. A long time. She stops in front of me.

“Where’s Rosie? We gotta get dinner started,” she says.

Who’s Rosie?” I ask.

“The dark k-k-k-kimble closes the market it goes,” she says. I don’t understand. What does she mean? I think I’m losing my mind. Everything and everyone in this place is crazy. My head aches. My stomach feels sick. Why is my leg sore? Why is there a bandage on my arm? Who is taking care of my kids? I have to get home to make their lunch. I’m a busy lady. I have work to do. I have to get out of here. A young woman walks by. I reach out, grab her hand. Maybe she can take me home.

“What do you want, Annie?” she says.

“I don’t feel well. I want to go home.”

“You’re fine,” she says. “This is your home now – remember?”

“No, it’s not,” I start to cry. “Please take me home.”

“You’ll be fine. Don’t worry,” she says and walks on. I’m not fine. I’m not fine. Why won’t anyone do anything Ding. Ding. Ding. A bell rings. Ding. Ding. Ding.

“Helllppp! Helllppp!” Someone calls from somewhere. Whoever it is is in trouble. Whoever it is is afraid. Somebody should do something; but no one seems to care. No one answers. “Helllppp! Helllppp!” The person who is afraid calls again. Maybe I can help. Maybe I can do something. Maybe she’s hurt. Maybe she needs to go to the bathroom. I stand up.

“Annie, sit down,” a voice beside me says. “You’re not allowed to stand up, dear. Sit down please. Dinner is in an hour. But right now you need to sit down.”

© Susan Macaulay / 2016

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Copyright: michaklootwijk / 123RF Stock Photo

Hope, Love, Music, Spirituality

give me jesus on the line

33449964 - retro and elegant telephone on the heaven

March 26, 2015.

I get Mom settled on the sofa.

“That’s going to be nice eh Sue?” She says. “Is it going to be nice the last one?”

“Yes, it will be,” I reply. Her words remind me there’s something important I want to say. I take her hands in mine. “Mom, I want to tell you something,” I begin. “Just in case something happens and I can’t come to see you, don’t worry about it OK? Her eyes lock on mine. All of sudden she is completely focussed.

“Oh,” she says low and quiet.

“It’s not because I don’t want to be here. Somebody might stop me from coming to see you,” I say.

“Is that right?” Here voice is even softer and lower now.

“Yeah.” I affirm.

“Like who?” She asks.

“I don’t know Mom,” I lie. “But I just wanted you to know that if it happens, if I don’t come, it’s not because I don’t want to.” My voice cracks. Tears threaten.

“No, I know,” she says. “I know. I know it’s not want to.” Bits and pieces get lost on the way from her brain to her mouth. But she has divine help getting her message across.

“I don’t want you to want the the the thing,” her words skip and stumble in a dementia rush. “You know…because it’s not my thing. And I don’t like things like that.”

“I know Mom,” I try to comfort her despite my fear and despair.

“I don’t like it like it…I I I I just don’t like it. Because it belongs to the the the the the…. It belongs to…. It belongs to the person it belongs to.” She’s hit the nail on the head. “And I remember that that remembrance. Near that person I have to… I feel that it’s right or wrong, you know. I don’t want it to be a wrong thing. It won’t change any way at all,” she continues. “It’s not going to change anything. Because it’s all, it’s all, it’s all the things. It’s the singing of everything.”

It’s the singing of everything. The totality is meant to be. There’s purpose behind the pain. Her wisdom sometimes blows my mind.

“I just wanted you to know Mom. I didn’t want you to be upset or anything,” I say.

Click on the player if you would like to hear the full unedited audio version of the conversation. It’s about eleven minutes long.

“No, I didn’t want to be upset. You know that,” she says.

“I know but I wanted to tell you in case you don’t see me that it’s not because I didn’t want to come Mom,” I repeat. I know in her core she will understand why if I never see her again in this life.

“We know that Sue. We all know that.” Her voice is firm and strong. It gives me hope.

“So we have to make the most of the time we have together, Mom.” I squeeze her hands a little for emphasis.

“That’s right. That’s right. We have to get the silver sign. And that’s got to be signature. That’s it,” she says.

“Yes,” I say.

I’m glad I’ve  told her. As crazy as it may sound, she knows stuff, even though she has trouble articulating the depth of her understanding. She knows.

“You’ve been out running the roads this morning,” she observed the other day.

“You’re right Mom. I have been. I had to do some shopping,” I laughed. “How did you know? How do you know these things you have no way of knowing?”

She looked me straight in the eye and spoke her truth: “The Lord tells me,” she said.

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Image copyright: gelpi / 123RF Stock Photo

Care Partnering, Life & Living, Love, Memories

shower time revisited (part 3 of 3)

This is the final instalment in a three-part series. Parts one and two are here and here respectively.

I turn off the water when we go into the bathroom. I ask Mom if she’d like to take off her watch before stepping into the shower. I remind her to take her nightgown off too.

She says she prefers to turn the water on herself once she’s in. She doesn’t want to wash her hair she says; she’s afraid of getting soap in her eyes. It’s okay I say, I’ll help you make sure you don’t.

I bought special non-sting shampoo the other day should things go awry, but I don’t mention it. Better she thinks she’s using her regular shampoo.

She turns the water on. Be careful Mom I say, make sure it’s not too hot. I know how to turn the water on she says. I know you do I say. And then she says: oh the water’s too hot! Turn it down a bit Mom I say and she says okay but she’s not quite sure how to do it after 30 years of showering in the same shower and so I reach in and twist the knob for her and my arm gets soaked and water sprays all over the floor but even if the bathroom floor were flooded a foot deep it would scarcely be a drop in this colossal Alzheimer’s bucket and who worries about a drop in the bucket? Not me right now.

I guide her through soaping and rinsing her body and then it’s time to wash her hair, which is the worst part for her.

Pick up the shampoo Mom I say and she says where is it? On the floor on your right I say. She pauses to think about where her right is and then starts to reach down to her left and I say the other right Mom, the other side. I have to yell a bit so she can hear me over the sound of the shower and through the foggy glass doors that separate us but I try to yell softly in a calm and soothing tone so it doesn’t sound like I’m telling her what to do because she doesn’t know how to do it herself anymore which clearly I am because clearly she doesn’t.

But we pretend otherwise. We pretend we’re not inside out and upside down. We pretend it’s normal that I should be standing here fully clothed while she’s naked in her shower in her bathroom with the pink floor and that I should be telling her how to have a shower because it’s something we’ve done together for decades like making jam, or picking green beans in her garden or walking down to the lake.

We pretend this demented world is normal. I pretend to preserve her dignity. She pretends for the sake of her pride. We both pretend so the other won’t be embarrassed. But somewhere inside we feel embarrassed anyway. We bury it.

Somehow healing sniffs out that bone of embarrassment, digs it up and worries it until the awkward intimacy becomes strangely natural and familiar. It’s a small miracle. We’re lucky. We accept our unwanted reality and protect each other in the process.

She gropes around and finally finds the shampoo and I tell her to flip the cap open and put a bit of shampoo in her hand and then to put it on her head and then to put the shampoo container down and she does and she’s scrunching her eyes shut so tight it must hurt because she’s terrified of soap getting in them and I say okay mom you can rinse now, back up a bit and put your head under the shower and she does and then I say turn around Mom and put your face under the water and she turns around in a slow motion pirouette with her hands over face because “I don’t want to get soap in my eyes” she says and I say I know Mom and it might be easier if I just got in there with her but it’s important that she does it herself because she wants to and she still can and it’s about confidence, competence, and the illusion of control.

She may be helpless, vulnerable and childlike, but she is also a grown woman with thoughts and feelings. She is my mother.

“You can turn the water off now Mom.”

“Okay,” she says and she does.

She slides open the shower doors and stands there not quite sure what to do next. I hand her the towel I had put on the heater so it would be warm when she got out.

“Oh!” she says, “that feels good.” She’s talking about the whole experience: the shower that’s now over, the warmth of the towel and the fact that she’s fresh and clean.

“I’m glad Mom.” Inner peace seeps through the cracks in my heart like a rising tide. Pockets of despair get filled with something else. I smile. She doesn’t see. She’s too busy drying off and thinking about what’s next.

“I need to brush my hair.”

“Your brush is there Mom.” I point in front of her, beside the sink. She picks up the brush, runs it through her hair hard and fast. Then she “plumps” the sides with her fingers; she’s always done that. She has a particular way of looking at her reflection, with her chin pulled slightly in and her eyes gazing upward. She’s still beautiful and youthful, even at 84.

“Powder?” I ask.

“Oh yeah.” She had forgotten. Johnson’s Baby Powder. Large size. She puts a little on each breast. Also large size.

“You like to put deodorant on too Mom. You do it like this.” I stand beside her in front of the mirror; she watches as I lift up my left arm and motion up and down with the stick of deodorant in my right. Dove unscented. White and blue plastic package. I hand it to her. She copycats. I pour a little Oil of Olay into the palm of her hand.

“Rub your hands together Mom, then put the cream on your face.”

“Okay.” She applies the cream none too gently. “That’s that done!” she says.

And with that done, it’s time to help her get dressed.


This is the final instalment in a three-part series. Parts one and two are here and here respectively.

Subscribe here.

Image copyright: ake1150 / 123RF Stock Photo