Mini Caregiver Tips Cards

Mini Caregiver Tips Cards

Accepting the Gift of Caregiving is not just a book series, and is not just the name of a blogsite. It is a process that we caregivers go through by the caring experiences we live, from the desperation, and sometimes even despondency, we feel until we reach awareness, insight and understanding and eventually acceptance. It is not an easy journey. My purpose in writing Accepting the Gift of Caregiving is to be encouragement as caregivers make their way from desperation to acceptance, from anxieties to courage.

On your journey you may wish to have a little reassurance handy, to realize others have been through some of the same experiences, felt the same emotions and it might bring calmness to your hour or day.

Print these out and put them where you can refresh your commitment to caregiving once in a while.


Also, please read the extensive list of CAREGIVER TIPS that
other caregivers have contributed,
or send us your tips if you wish to contribute tips yourself.


ACCEPTING THE GIFT OF CAREGIVING
Memory-loss caregiving Tips

TIPS FOR CAREGIVERS
Remember, you are doing the best you can at the moment.


You are welcome to download front or download back, if you like, or print screen them. Please do not sell them or use the text as your own. If you use them online or print them, please give credit to Judith Allen Shone.

I would like you to use them to feel reassured and encouraged. ~ Judy Shone


Mini Caregiver Tip Cards (c) 2021 Judith Allen Shone

Searching for What’s Lost

Searching for What’s Lost

Here we are, nearly nine years since I said I’d be My Love’s caregiver— when his downhill slide began, when his coughing was given a name… COPD. More significantly, it is nearly eight years since his doctor confirmed that his forgetful behaviours indicated an Alzheimer’s and vascular dementia diagnosis. Now, I am watching as My Love enters stage seven. I am learning new strategies as his Alzheimer’s disease unfolds. It is not surprising so much of his life is ‘lost.’

At this point in My Love’s life, he has truly lost many memories—he recalls today’s drive across town for a few minutes or maybe an hour? Yesterdays’ game of cards or memories of art classes last year fade quickly. And even his recollections of skiing and boating from younger years, those called long-term memories from the peaks of his life, are falling away, vanishing.

The words he held in his brain continue to evaporate. Losing his words is not new, just more intense. Our conversations are nonexistent. He seems to hear what I say, although, he does not always seem able to connect a meaning to the sounds. If it is important, I cannot wait for games—I ‘just do’ whatever needs doing.

When he walks to the back room for a sweater, it is normal for him to come ask me what he was getting, or even to return without the sweater and not realize he had gone to get one.  When he begins to go to the bathroom, he first asks permission if he can go and then confirms with me where he is supposed to go…’first door on the left down the hall.’  I must watch to be sure he makes the correct turn to eliminate any possible alternatives and to avoid any accidents.

When he asks for a glass of milk, which he indicates with his hands and fingers showing me the height of a round glass when he cannot ‘find’ the word milk, he might forget why I left the room and wonder why I brought him a glass of milk on my return.

My Love is somewhat of a neatnik!  He removes the Kleenex from the box and folds each one into a square and tucks each one back into the box. I have found pencils, spoons, his inhaler, and even the TV remote mixed in with the little stacks of folded tissue. He has all his art supplies in several transparent containers so he can see what he has. He has stopped using them but still likes looking at them. If I need to locate the watch he took off last hour, or he wants his fingernail clippers, I might have to sort through the art supplies, Kleenex boxes, book shelves, baskets of CDs, or among the potted plants and sometimes even in his coat pockets, to find where he has neatly stowed his ‘personal belongings.’

His billfold is his most prized possession. He still puts it in his back pocket, pats his behind to check it is there each time he stands up. At night, he carefully puts it on the dresser like he has done for all the years I have known him. At this point, it carries paper copies of his Canadian senior card, his provincial senior ID and a couple of his former ‘important’ business cards from days gone by. We have found a misplaced billfold in a different pocket, under the bed, in a drawer, on his desk hidden under papers, on the shelf in the bathroom, in his pants in the laundry. Even though it no longer carries anything of value, I believe that to My Love, it still carries the idea of his former life. If I say we are going to the grocery, he immediately pulls out his wallet and anxiously reports he has no cash. Each time I explain they will not take cash anymore, so he should not worry about it. He seems to accept that. He can no longer connect the thought process of why he needs cash.

In this stage of Alzheimer’s his schedule has been shifting. He wakes later in the day, wants his meals at unscheduled times, and has no interest in going to bed at his former ‘regular’ time. I cannot go to bed while he is awake. This changing schedule is pushing my exhaustion level higher. I try to waken him, but he rolls over and goes back to sleep. There are times it is nice for the peace, but mostly it is tiring to adjust to a new schedule that is only temporary. When he does finally walk down the hall, dressed in his jeans and pj shirt with bare feet, he asks where his shoes and socks are. He has no idea he has walked right by them on his way out of the bedroom. He does not understand the words I use to explain where he put them the night before, so, routinely, we must walk to the bedroom together to find what was lost.  

There will not be a solution to this craziness, it is the disease. Where he puts his shoes has not changed in years. We have lived in our home nearly twenty years and the bathroom has always been the same place. But he now cannot remember. I am the one who must find the lost inhaler when his allergies turn his eyes red. He no longer recalls what it looks like, what it is for and how to use it. He is not sure what his nail clippers are for and he forgets how to use them, so he hid them away and now I am the one who must guess where he ‘hid’ them.

It is like his medications. He has begun to resist taking them. He hides them in his food, under his napkin, and has dropped the pills in his water to melt. I see them. But he thinks he has tricked me. I do not think memory loss has prompted this behaviour, but perhaps chewing pills and getting a bad taste in his mouth has made them undesirable. In any case, I am trying to give him his pills before a meal so I can monitor closely and do not have to go looking for them later!

Do I sound catty? The pandemic is impacting both of us, but especially me, because we, or I, go NO-WHERE! It is winter now; he cannot wait in the car while I shop. I would take him with me to but I spend too much time explaining the distancing rule rather that getting in and out in a hurry. He has no idea what the virus is all about. Like many, he hates his mask. I envision the scene where, if he went with me, he would be asked where his mask is, and he would not know what the person was saying and would not be able to answer.

So, knowing My Love is happy sitting at home for twenty minutes with a TV show on, I can make short, quick trips, or else pick up packages in parking lots, or order online and accept deliveries. And although his surrounding life may be disappearing, at least when he is at home, I do know where to find him…he is not yet among the lost. 


Searching for What’s Lost (c) 2020 Judith Allen Shone

Another Day Dawning

Another Day Dawning

Ever since we began our journey in Alzheimer’s world well over eight years ago, My Love has been a Cookie Monster, not to mention his craving for ice cream. Hence the titles to the two books, Is There Any Ice Cream? and Did You Hide the Cookies?) In truth, not a day goes by that he has not asked me those exact questions . . . and, yes, I do hide them.

My Love is now in late stages of Alzheimer’s disease. I see big changes happening, I witness memory slides I would not have believed years ago. I have to be the encourager, keeping him active as much as possible. But COVID-19 has taken a toll on those at high risk, who are restricted to staying distanced, even isolated. He will do some basic chair exercises with me each day. He still smiles when I play John Barry music, so I try to play it often. On the TV, it’s the old black and white, ‘calmer’ movies, with familiar actors and simpler plots, that tend to keep his attention.

Otherwise, I find My Love is not interested in doing more than watching the digital photo frame rotate through the pictures of his family one more time. He still points to pictures of himself to tell me “there I am” or “that is me” almost as if he might be forgetting that connection himself. I rarely ask if he can tell me who everyone else is at this point – it makes him feel bad when he cannot answer.

And so when I hear My Love clattering in the kitchen I recognize that his interest has begun to wander, telling me he is bored.

That’s when I go find a couple pictures for him to colour or paint.

(Download below two sets of free drawings from the internet for colouring )

I put out his brushes and watercolour paints, and a small glass of water (heavy enough so it won’t tip over). Then I drop water on a few colour squares and begin to paint a flower petal or sky so he knows what to do.

Generally, My Love follows my lead and takes a brush from the water and continues to paint the picture. He currently remains engrossed in painting for about an hour, which is a long time compared to other activities. I now offer him much simpler pictures to colour than I did a year ago. In fact, a year ago, he was drawing and painting his own compositions that are now framed on his Gallery Wall. (Read Art and Music As A Brief Intervention in this site.)

When paints no longer interest My Love, I find a picture book he loves to look through. Pictures of the world from the sky. My Love used to look at it for hours. Now his attention span is greatly reduced. But if I sit with him and we talk about each picture, he stays with me and looks at the book. I love doing that, but can’t do it all the time, so I suggest it when I can sit for a while.

But time and Alzheimer’s have stolen his desire to do much. Some days I see that the disease has removed his memory of even creating those original pictures. I am glad he still likes to paint. It occupies his time and is something he still can do. But mostly, he truly is happy to have completed a picture when he is finished.

I feel good when My Love smiles and tells me, “I did that.” His tone tells me, “of course!” Watching him paint is a warm fuzzy for me, too. 😚

And the cookies? I just this minute took two little chocolate stick cookies and placed them on My Love’s table with a napkin. He just looked at me.

“What are those for?” he asked me, in all seriousness.

I put my pinched fingers toward my mouth.

“Are they for me to eat?” My Love asked, as he imitated my movement, putting his empty hand to his mouth. I’m not sure he connected with “cookie.” I could not believe what I had seen. I smiled and shook my head yes. He smiled in return.

Does that mean his love for cookies is slipping from his memory . . . is the memory of loving cookies fading? It will be sad for me, but My Love won’t even know.

Another new day is dawning, and as always I just have to remain flexible, in the present and lovingly helpful.💕🌷

Four of the pictures in the download 1

I share here, a download of 12 drawings on white background I found FREE in various places online. If your loved one likes to colour or paint, use them. You need a printer or maybe someone can print them out for you. Art has been an activity that has provided many happy hours for My Love through the years. I hope it will for your loved one, as well.

DOWNLOAD 1 DRAWINGS (set #1) -14 pages, in pdf format

Four pictures in download 2

DOWNLOAD 2 DRAWINGS (set #2) -12 pages in pdf format

~jas


Another Day Dawning (c) 2020 Judith Allen Shone


BE PREPARED for the role of caregivermy stories from my life as a spouse-caregiver are written in real time just like the stories I tell here. Read the stories I share to become prepared for life in the world of Alzheimer’s!

For more book information, visit caregiver-books.com

Order from local independent book stores, in paperback, hardcover and eBook. Thank you. 🍦🍪 LARGE print in paperback and hardcover.
A Different Drummer Books Burlington, Ontario,
The Bookworm in Omaha, Nebraska,
Maria’s Bookshop in Durango, Colorado

or order online from most booksellers, including Amazon.ca

Thank-you-mums

Thank-you-mums

Road ahead

My Love has memory loss. We began this circuitous journey together over eight years ago. Right now, I can tell he is rounding the bend in full view of late stages of Alzheimer’s disease looming ahead. There is no road map we follow on this journey The limited verbal skills that are developing are the newest bumps appearing along the road. I know these next months require intense around-the-clock care.

Recently, I experienced the biggest dipsy-doodles of our ride, just like thank-you-mums when they tickle the tummy … these bumps got my attention

My Love’s daily routine has been changing, showing me he appears to be crossing the border between stage 6 and stage 7 along the Alzheimer’s spectrum,

  • My Love has been getting up between ten and eleven in the morning, instead of nine, giving him nearly 14 hours sleep.
  • Sometimes he stays up beyond his normal nine, until eleven at night, and then sleeps in the daytime, shifting his sleep pattern.
  • Daytime hallucinations are increasing and lasting longer.
  • I help him shower and shave. I must remind him and help him.
  • He is not sure how to pick clothes or how to put them on. He knows wearing pjs is not right in the daytime, but can’t figure out how to change them.
  • He knows he must ‘change to something else’ before bed, but needs help with knowing what that means. Words alone won’t help him.
  • His ability to verbalize his thoughts, or to understand my words, has diminished significantly…repetition and rewording on my part does not help him. The connections are pretty loose right now and appear on the way to ‘burning out.’

The past few days I witnessed these intensifying shifts going on and, just like the tickle in my tummy, his altered routine has gotten my attention.

Yesterday morning, My Love came out to the living room, still in his pjs. I knew he had just gotten up, yet he seemed to be on a mission, and darted straight over to me, where I was sitting at my computer. 

“I am so sorry for all the things I did. All the things I did to you,” he blurted out at me. “I did not mean to do them. I am sorry. I mean it.”

“What are you talking about?” I asked, holding my hands out to steady his wavering body, while looking into his eyes to be sure he was, indeed, awake.

There was no usual dramatic entrance, no “good morning,” or even a normal “hello.” We had not had any discussions or any remotely similar topic that might have prompted even a conscious apology. I wondered if his anosognosia had lifted, or even was miraculously gone…after all, he suddenly remembered things he was not proud of in his past! Why else would he feel compelled to apologize for something he just realized he had done?

Is this how we do when we want to make amends?

 Definitely, I wondered what happened. 

When I asked what he meant, he said, “That’s what those people told me to say.”

“What people,” I asked, not ready for any new visitors.

“The people back there,” he answered, pointing to the bedroom.

Yes, a shift is happening.

Am I watching a movie and I am in it, but I am not controlling me? It all feels very strange. Similarly, I wonder how he feels being in the late stage of Alzheimer’s, yet I know he does not even realize anything is wrong at all.

I ignore so much or I’d feel life was too bizarre!

So, are these new morning people in his sleep-dream state or are they hallucinations? I am not sure. These ‘people’ are talking to him? Or is that, too, hallucination? 

In addition to the new morning ‘visitors,’ My Love has ‘visitors’ who come between four and seven in the late afternoon. Evidently, his guests, who have been appearing for months, just sit and then leave without saying a word to him.  He never can describe them but always asks me if I know where they went or if I have seen them.

I routinely tell him I was in the kitchen and must have missed seeing them leave. He accepts that.

I doubt it is the pills, because we have not changed the pills. Although, slowly he is using fewer. But since I have been told before, “take note of new or altered behaviours, and if they cause pain or persist, ask a doctor so they know what is going on.” I have done that, and, I will, again, in our Dr./Zoom conference coming up this week.

Then, this morning he came out to the living room, without a stitch of clothing on, asking, “Can you please help me?” as he turned to walk back down the hall.

I was completed stunned that he was undressed and fidgeting like a nervous dog. I got up and followed close behind him.

Through watching his gestures and seeing his nakedness, I concluded he needed to know where his clothes were. He was trying, without words, to ask me to help find his clothes. He did not know what to put on.

He has been on this limited vocabulary track for some time. I must say, though, that this was the first time he was in such a hurry to get dressed. Maybe since he no longer remembers me, he feels quite ‘private’ about dressing.

I usually put his clothes out the night before and he dresses himself in the morning. He has never asked me to help him find his clothes. But this day, he had no idea what he needed and where to find ‘it.’ There is no pattern of how his memories fade…this time he happened to bundle his losses.

A couple years ago, when he had elevated calcium, I had to help him dress. Back then, he needed my assistance for eating, walking, and dressing, putting on socks and shoes, because the swelling was excessive, and the pain was great. 

But this is different. Most of the time, now, I notice he needs reminders/assistance – so much involving functional, procedural and emotional memories.

Every day he declines a bit more. For a good part of the day we cannot ‘really’ converse. Often, lately, he can’t say words, and he doesn’t always find a substitute word, he can’t even find a gesture that mimics his need. He just cannot get the words in his brain into an area (hand gesture, words, motions, even charades) where he can communicate. This has reduced his activities because he chooses to do very little.

Declining verbal abilities are part of late stage of Alzheimer’s disease. Sadly, I await more dipsy-doodle thank-you-mums ahead on this bumpy road.

😥 It is sad to go through this. But as always, he is ever happy. I am the sad one.

~ LEARN MORE: Conversation Blackout, about words. ~

What are his sleep-dreams or hallucinations related to? Medication or just Alzheimer’s disease? Things change so quickly, will I ever know?

Does it matter?

~jas

“Thank-you Mum” (c) 2020 Judith Allen Shone

~ ~ ~


BE PREPARED for the role of caregivermy stories from my life as a spouse-caregiver are written in real time just like the stories I tell here. Read the stories I share to become prepared for life in the world of Alzheimer’s!

Order from local independent book stores, in paperback, hardcover and eBook. Thank you. 🍦🍪

Watch for upcoming Did You Hide the Cookies? the second in the Accepting the Gift of Caregiving series, Inescapable Heartache of Caregiving for My Love with Alzheimer’s, Anxiety and COPD to come out early this fall.


A Different Drummer Books Burlington, Ontario,
The Bookworm in Omaha, Nebraska,
Maria’s Bookshop in Durango, Colorado

or online at booksellers, including Amazon.ca