Fatigued, in need of respite

Fatigued, in need of respite

Is it the heat? or maybe the humidity?

I sure notice how tired I am this month. Is it because summer is actually here and sunshine is pouring in our windows, baking us as it does each year? Our AC is working hard, the dehumidifier has to be emptied often and the three fans in the room are at full speed. But even with my protector screen in front of the southern window, the heat tends to make me sick.

I won’t open the door to let in the breeze because nothing filters out the humidity! My Love’s COPD cannot handle the humidity. My body cannot handle the humidity…on this one thing we do agree!

So what do I do? In the afternoon, if I see the tree tops swaying and realize there might be a small breeze blowing, when the sun is on the other side of the building, I open the door a crack, daring the humidity to come in, “…what point to run a dehumidifier with the door open?” I ask.

My Love reaches for his puffer. I know effects won’t last and he’ll feel a need for another puff soon. I step out onto the balcony and shut the door behind me. It is nice to feel the wind brush my arms, and notice my ”’much too long’ hair blowing around….to realize it is summer…the second one since the pandemic began. We have been inside for so long!

I have just spoken with the head of the day program where My Love attended 16 months ago. They anticipate possibly being able to open, on a limited-participant-each-day basis. Oh, how nice to hear that. It had been such a nice few hours for me each week. She asked what I thought about starting again…after our second vaccines this month.

How different it is now than those months ago. How changed I am, and My Love is. How much older I feel having been isolated so long. I consider how much My Love’s memory has lapsed since we left the program for lockdowns. I consider how much functionality his body has lost, how much more I must do for him, think for him, say for him—he is never alone. All the time now I am two people, multi-tasking, double-track thinking, perhaps? Will he fit in with the day program folks now? I wonder.

He doesn’t register anything about the virus, he hates the mask on his face and has no idea why he must wear one. The one criteria of concern is the need for social distancing. It will have no meaning. I seriously doubt he could consciously understand the need to stay at 2m from someone else. He has no clue about the virus, even when I mention the ‘big sickness.’ He does not remember my words, let alone know what they mean. Masks and distancing are off the charts of understanding.

But, I definitely need respite. I am aging faster than I would have believed possible. I feel old. Much older than the sixteen months that have passed since we have been isolated, like captives, in our small apartment. I need the stimulation of other people. I know I need some grooming, some TLC time for me.

Without a doubt, I need to be refreshed, recharged, repaired, the same as someone focused on driving all day needs a rest, I need to relax with both eyes and both ears, and full mind attuned to something other than my responsibilities toward My Love’s every need. I have ‘grabbed the bull by the horns and moved forward,’ long enough without help.

Our second vaccines were last week. We had relatively little reactions, and this week it seems we are OK. I am calling the services we had before the pandemic halted our lives to see if we can get some help for My Love and respite time for me.

Hopefully, the powers that be will acknowledge my request for someone to help with showers and shaving. Someone to talk to him while I go to the basement to do loads of laundry. Hopefully, someone will come and relieve me of continual conversation…ultimately with myself…yet provides a closeness that stimulates his mind. My wish is that someone else can keep him from wandering off to find secret spots: to hide his puffers, to deposit his pills he’s put in his pockets, to hide his accumulated, folded squares of Kleenex, to remove and hide his Depends without telling me. It is amazing how quickly he can scoot down the short hall, after asking permission to go to the bathroom, and carry on all his clandestine activities in the back rooms….all while I am in the kitchen cooking or washing up. Unfortunately, from there I cannot see or watch him. If I did not know better, I would say he planned his mischief so I would come out and play with him! But alas, he is just ‘doing things without thought’ like many one-year-olds…he has not words to tell me, he just does…that’s his level now in stage seven.

Light at the end of the tunnel is having someone to relieve me while I take a nap; even if they can look through picture books together while I catch up on another of many forgotten chores. I am not young anymore. My next birthday will be my 80th. I understand that having respite might not come from the day program if he can’t meet their criteria. Even though I don’t have the energy to do the many other things I used to do, planned respite hours from somewhere just might allow me again to be a rested caregiver, to carry on from one respite period to the next.

signoff initials

I know exhaustion happens to us all. Take note. Take action. That’s the plan.

Do you have your plan? Visit our blogsite page Respite Ideas. Time to make your plan.


Fatigued, in need of respite. (c) 2021 Judith Allen Shone

Caregiver Holidays

Caregiver Holidays

Christmas Greeting

JOY TO THE WORLD

The sounds of strolling carolers, or neighbours singing, the church organ playing, music on radio and TV, videos on social media, CDs playing while making holiday cookies; meeting friends for a drink of cheer and laughter, or walking in the snow—all enhance the excitement of the holiday season for many families each year.

The words of songs and holiday stories stir up visions of happy times together with families and friends. Sadly, this year of COVID has intensified the lack of these experiences for many, but particularly for caregivers, who find their challenges have already diminished their moments of joy.

IT CAN BE DIFFICULT at the best of times for caregivers, especially for those caring for loved ones with memory loss, to feel hopeful and happy during the winter holidays. And even more so if they have been giving care to the same person for a number of years.

There is no doubt that caregiving is exhausting. Life’s little happy moments show up less and less, and caregivers can become numb to the glitter, glamour and excitement of the holidays. Sometimes it seems easier to just let the holidays pass, unnoticed. Sometimes a state of depression seems safer than trying to lift a heavy heart and gloomy spirit to join in merry festivities.

But articles and studies indicate it is not really healthy to withdraw from the social and iconic traditions of holiday festivities and gatherings. And perhaps, not really necessary. There are ways to maintain a healthy mental outlook to enjoy special times. It is worthwhile remembering that caregiving can be a long road and sustaining good mental health must be on top of the caregiver’s self-care list.

Good mental health for caregivers is important enough that it must be consciously addressed. Consider how you might help yourself step away from the suction of depression, the heavy heart and gloomy spirit, by spending a few moments, or hours in honour of your own care!

Whether a caregiver or someone who cares enough to support caregivers,
CONSIDER how these suggestions might be helpful:

poinsettia

ADD SOMETHING TO YOUR ‘GRATEFUL LIST’ or your Appreciation Journal, daily. In his book “Upward Spiral,” neuroscientist Alex Korb, M.D. explains that practicing gratitude is one of many pathways to an upward spiral to happiness.

It may seem counter intuitive but when we are ‘down,’ if we start counting our blessings we feel better. And when we feel better, we can care better. And when we care better, our burdens of caregiving seem less. Somehow, it works, beginning with being grateful.

CALL AND CHECK ON SOMEONE. It will make your life fuller to have someone new to check on. One time or more. But at the holidays especially. I am grateful to those who check on us time and time again. I know how good it makes me feel to hear their voice in a time when I cannot go out. And in turn, I can call one person and hopefully make their day brighter.

COLLECT UPLIFTING QUOTES. Hard as it may seem to believe, other people have walked in our shoes. Learn from them. Look for their encouragement in their words. Find and save quotations that make you feel good, ones you can read over and over and each time feel better than just moments before. Save them where you can find them, whether in a notebook or in a computer file.

sheet music and bells

 LISTEN TO FAVOURITE MUSIC. Music makes us feel better. “When you listen to a song you really like, dopamine [a neurotransmitter] is released into your brain. The effect of this is simple – you feel good! Brain scans have shown that this dopamine rush is at its peak when you reach the part of the song you love most or in the 15 seconds leading up to it.”

The dopamine spreads the good feelings and make you feel better.  Make a playlist of music to play or keep those special CDs close by. Get  up and dance if it makes you feel good. It is your mental health that is being soothed…’work it!’

BRING OUT THE FAMLY ALBUMS OR PHOTOS.  Holidays mean family to many, so it makes sense to explore more about your family during times you are together, zoom or by email, phone or even by going through your genealogy information. Good feelings arise when you reflect on former holidays spent together, good feelings surface when you see photos of those you especially are or were close to. Be the instigator of your own good feelings by finding photographs and put them where you can see them.

Angels

INCLUDE COOKING FOR HOLIDAY UPLIFT.  Sensory memories seem to last a long time. Associating certain foods with happy moments awakens those happy memories. Make cookies, or gingerbread, fruit breads, or even let wassail simmer on the stove. Cook a small turkey and dressing to fill the home with holiday memories. Take time to recreate whatever soothes your sense of smell to bring those ‘feeling good’ memories to life.

SHARE WITH FAMILY, FRIENDS AND NEIGHBOURS. In the pandemic we have missed meeting our social needs. If there are ways to share with friends and neighbours and family, drop a basket of wrapped treats, a book or a meaningful item on their front porch or inside their door. Better yet, make arrangements for a hand-off time and a quick masked smile and wave.

Perhaps, you can stand in the yard and they can stand on the porch and sing carols together. Sounds of music can go through the mask materials. Christmas cards are becoming less of a tradition because of the time it takes to write them out. So instead, write one Christmas letter and send it out. People who enjoy hearing from you will love getting it. They are ones you care about.

ZOOM / TEAMS / FACETIME often, with family members rotating in ‘the chair’ so loved ones get to be part of the festivities and close to loved ones. For those who need help, a phone appointment for a few moments might be a luxury but take it. People on both ends of a call benefit from connecting. Remember to ‘take a picture’ of the event, print screen, and send them a photo of the event afterwards.

REMEMBER TO BE THANKFUL for these opportunities. Let them warm your heart. Doing for others has a way of lifting us from our own depressed moments so we, too, can enjoy our special times during the holidays.


Elder angel

I wish you all a year ahead filled with love, awareness, kindness, gratefulness, and appreciation for the blessings we have had. May the hard times be dwarfed by the memorable moments you can return to over and over in your mind. I wish you good health, friendships, and easy times.

HAPPY HOLIDAYS, wherever you are, whatever you may celebrate.  May 2021 bring you all that makes you happy, all that is meaningful and all that is beautiful. May you know how to walk away from unhealthy situations to keep your world a kinder, wholesome place.

sign off jas

Amen. – Judy Shone

Each day, do something that makes others smile and your heart sing!


Christmas books ad

In paperback, hardcover and ebook

Holiday happiness for a floundering caregiver!!

Available online: from Amazon and other booksellers
Order locally through:
A Different Drummer Books in Burlington, Ontario
Barnes & Noble in US
Chapters/Indigo in Canada
Maria’s Bookshop in Durango, Colorado,
The Bookworm in Omaha, Nebraska,
or other local booksellers.


Caregiver Holidays (c) 2020 Judith Allen Shone

Searching for What’s Lost

Searching for What’s Lost

countryside

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.

milk glass

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.

brushes and paint

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.’

plants

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.

medications

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.

signoff initials

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

bear and books