Accepting the Gift of Caregivingis 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.
(Click to enlarge images)
ACCEPTING THE GIFT OF CAREGIVING Memory-loss caregiving Tips – Front side –
TIPS FOR CAREGIVERS Remember, you are doing the best you can at the moment. – Back side –
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
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.💕🌷
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.
BE PREPARED for the role of caregiver…my 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!