Imagine you have dementia

Imagine you have dementia

I like the idea of putting my feet into the shoes of someone with dementia to better understand how it might feel for some – maybe it will give you a sense of what they experiences as you read it, or like me, you have lived it.

It is accepted that no two loved ones with dementia have exactly the same experiences, no two go along their disease path exactly like anyone else. BUT still, we can learn and get a sense of what it is like through what others tell us.

Maybe after reading this, you can take time to search for other descriptions to read to enhance your knowledge-bank of this wicked disease. Find them. Read them. Share them.

While this featured writing is not my creation, it is posted with the hopes of helping to dissolve the stigma surrounding memory loss. I searched Google and was unable to find an author.


Unsteady
Lonely
No words come
Confused

DEMENTIA
How many times have we heard people joke about dementia? Have you ever said “I had a senior moment”? Nobody jokes about cancer, or ALS, or heart disease. But we joke about those who are suffering from dementia, an unimaginable form of hell.

Maybe if we knew more we wouldn’t joke about it so much.

Most people think dementia is just about forgetting. But dementia is so much more.

To understand what dementia really looks like, imagine this:

Imagine you wake up tomorrow morning and you are in a strange house, in a strange bed, and there is someone in your house you have never seen before.

You know someone has stolen your wallet and your money.

Now, imagine you do not know where the bathroom is, or how to get a glass of water, or whether it is day or night.

You see people coming through the windows, the floor is on fire and you wonder where your mom is, although she died years ago.

You worry about your children and wonder why they are not home from school yet, even though they are in their 40’s and 50’s.

Your body is so stiff and rigid that walking is difficult.

Weak
Hungry
Lost

Your field of vision is about the size of a shoebox, and you do not understand that by looking up, down or to the side, you can see more.

You feel unsteady on your feet because your muscles have weakened ao much.

You cannot wash your hands or brush your teeth by yourself. You have not showered or changed your clothes in days, but in your mind you just did.

You have things to say, but after two or three words you forget what it was. You try to say a common word, but only gibberish comes out. No one understands you, so you just give up.

You have always been a patient and kind person, but now you curse, throw things, threaten people, and tell them to get out of your house.

You loved to travel and go places, but now you get upset if you are away from home for more than a few minutes.

You do not know the month, year, day, time or season. You do not know the people around you and everyone and everything is strange. You are not aware of these changes taking place, and don’t understand why you are not allowed to drive anymore.

People treat you as a child. Friends stop coming to see you.

These are just a few things a dementia sufferer goes through on a daily basis.

They are no longer the same person, but they still see themselves as the same and everything and everyone else has changed.

Dementia is so much more than just forgetting.

There is no cure, and you will never improve. Your brain deteriorates to the point it no longer tells your body and organs what to do, so it shuts down. This disease will be your cause of death.

So when you hear someone has dementia, think about what it really means.

It is not just about forgetting.

Author unknown.


Thank you to my friend George Salter for posting this informative writing on my Facebook page.

FOR FURTHER INFORMATION ABOUT CAREGIVING FOR ONE WITH MEMORY LOSS:
1. Read more articles and posts and see the videos in this blog for more caregiver support. See top main menu.
2. Read my two books about caregiving.
Sharing knowledge is definitely one reason why we write books and blogs and make videos about caregiving…we know it helps those who seek to understand.👍😊

Sharing caregiver posts

Sharing caregiver posts

It was indeed a happy surprise to discover two posts from Accepting the Gift of Caregiving blogsite, specifically about needing respite and help, were referenced in a serious way on another caregiving blog, What to Do about Mama?.

I was humbled and honored seeing the recommendation suggesting others read my site. I loved knowing someone else had sensed the value of the two articles I had written exposing our own needs for support in a very friendly, hopefullly relatable, manner. Others could now become familiar with what might happen without warning in their life—we could encourage and reassure them together.

So many caring for others with all sorts of ailments, disabilities, chronic or acute illnesses or disorders, are so caught up in our own lives, that our own energy hardly allows time to expand our worlds to include new friends, new ideas, new stories, new strategies, that COULD HELP US THROUGH OUR CAREGIVER JOURNEY!

The Accepting the Gift of Caregiving site focuses primarily on spouse-caregiving for loved ones with Alzheimer’s—yet, we know many tasks and emotions overlap, regardless of who we are caring for. We realize, too, that there are many aspects to learn about each perspective of care. We suggest everyone take every opportunity to learn when you can about caregiving…listen, watch and read. You never know when or where it will be needed.

As caregivers, in the early stages, when we really are just learning the caregiver role, we don’t realize how valuable these stories could be. Let me assure you, caregiver stories are worth knowing/reading/hearing, — at the very least, know where to locate them when you need them. Keep a list.

When caregivers move into the middle and later stages of Alzheimer’s, we are so overwhelmed by life coming at us, with so much to learn all at one time, exhaustion sets in and few choose to read or research when we need to sleep!

Then when our caregiving is over, some feel relieved to take a break and get a breath before making decisions for the future.

But in the meantime, a lot of valuable, caregiver-written information is out there to help us. if we only have a few minutes, learn where to find it and glance through it for future referencing. Other caregivers are our best teachers. Keep a list.

So, take a few of those silent moments to poke around and read the stories of other caregivers, find books from meaningful perspectives, write down their location. Find blogs where you relate to the authors, where you can even participate. Learn what it means to be part of that special world of caregivers, where each one is doing the best they can.

Guest Authors have appeared periodically on this blog when I was able to give them and their stories time I felt they were due. Because of lack of time, both theirs and mine, I have not had as many as I would have liked. But the suggestion to readers to keep reading caregiver stories is valuable guidance from the heart.

It is important that we caregivers share our stories, our successes and failures, our good times and not so good times. It is equally as important to read caregiver stories…if you are short on time, read from the perspective you live…a spouse-caregiver, a parent caregiver, a sibling caregiver…each situation has its own unique aspects to learn. Offering helpful information has been the purpose of this blogsite from the start. I am grateful to those who have found my blogsite, who follow it, who have shared it, and found the contents useful in caring for their loved one.

When I was searching, I saw this post, (shown below) I wanted to share it. To let readers know that others share stories and that is how we support one another. I hope when you read these stories, you will think of someone who would benefit and you will share the links…not just mine, here, but any you see that could help another caregiver. I hope Accepting the Gift of Caregiving has helped you learn about caregiving for loved ones with memory loss.

My writing perspective is from a spouse-caregiver, and stories in What to Do about Mama? focus on caring for a parent. What we all have in common are the emotions we experience and the need for support from others. As you know, I say throughout my books and site, “Ask for help. No one knows if we do not ask.” Even the author of the blog below noted that important fact.

This is what I saw! Click image to go to read more about caregiving on Barbara’s site.

Thank you Barbara Matthews, author of book and blog, “What to Do about Mama?”.


Sharing Blog Posts (c) 2021 Judith Allen Shone


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Caregiver support to the rescue!

Caregiver support to the rescue!

Caregiving takes a toll…

Following the post, Fatigue…in need of respite, I am happy to report I have received help and may have more soon.

LESSON for those of you ‘learning’ your way through your caregiving journey: ask for help! No one knows you need it if you do not ask.


It can be total chaos, yes, such a ‘downer’ when we are overwhelmed by caregiver tasks…after one year or ten years, it makes no difference. At times I truly wonder if despondency is around the corner. What will happen when I don’t care anymore? I know now that I was ‘that’ close! (I had no energy to write my daily number of words…and that is serious!)

Sometimes I feel like I, alone, am now running my own private long-term care home with private, personal care for My Love. Not only am I giving 24/7 care, without normal sleep, I cannot always find short periods of respite in a day.

I am the nurse sitting beside him as he takes his 20 pills a day, reminding him the pills go in his mouth…after I show him where his mouth is… and helping him recall how to swallow the water, while keeping him from spitting his pills into the glass.

I schedule changing his disposable underwear in the morning, and then check throughout the day. I am currently his daily shower and shave attendant, plus his personal dresser, physcially holding his clothes so he can put them on and helping with his shoes. I must be with him during these tasks.

I am the cook who prepares special meals of soft foods, and cuts them as if for a toddler. I wash and put dishes away. I am the online grocery shopper, coupling a pickup with a run to the pharmacy for his pills. I definitely have been his taxi driver for nearly six years. I am the housekeeper, often cleaning two bathrooms several times a day- because he doesn’t remember which is his, and he ‘misses’ in both of them.

He does not leave my side. If I walk down the hall, he follows me, even to the kitchen, bathroom or shower to be reassured where I am. I seldom have time for the dusting and vacuuming, or doing laundry…but no longer is this a priority. All this from one person, increasing over the last ten years!

My life? I have none. Beyond my two daily naps, there is little time to do the things that others might consider essential.

A couple months ago, not long after getting our #2 Covid vaccinations, after nineteen months of the pandemic, being isolated, locked-down and house bound, I felt I had reached my limit. My limit of being a caregiver doing things way beyond what one person should have to do for another for nearly ten years. I was beyond thinking, but trying to keep up with what basics had to be done: feeding, sleeping. Unfortunately, I have lived and understand that undesirable ‘modern proverb,’ “two living in the shoes of one, 24/7” too long.

When someone cares…

What a difference a phone call makes! What a transformation someone who cares can make in the life of a nearly depressed caregiver!

During the same nineteen months of the pandemic, one of the attendants from My Love’s day program called each and every week—to check on our status. During the call of week 71, the lady must have heard my anxiety, my tired voice, my exhausted choice of words. Within hours of that call, she called me back and asked if she could try to get me help. I assured her the provincial help was coming, albeit slowly. She took over.

The next thing I knew, there was a Community paramedic team in our home, assessing My Love’s health and our needs. Within days, the community paramedic came to our home with the provincial coordinator, so together they could hear our needs and express what should be done and what was possible at the time.

I was the blessed beneficiary of caring, dynamo personalities in action!

Grateful for the help…

Yes! What a difference all those phone calls made in our lives. How humbled I felt knowing someone truly cared, how much better I felt when someone who could help came to our home to listen. Within days, even I could feel the heavy weights lifting from my shoulders as visits by those who would come to assist were being scheduled

We now have someone come shower and dress and shave My Love three times a week. We have had calls to help me with understanding his swallowing difficulties and his nutritional needs for when I have to cut up his meals, and when I may have to blend the foods. And, although I had previously spoken with the pharmacist, I now learned which foods I could put crushed pills with, as well as which pills I could crush and which I could not administer in/with another food.

At the same time, the day programs have opened up to enable a reduced number of ‘club members’ to return for daily care, to spend a couple hours in a safe environment while the caregiver has time to do what must be done away from the home, without including the care of the loved one. I am so grateful for the opportunity to have time for my own obligations during that short period each week.

What a difference it made to have someone who recognized I had reached my personal tipping point and now was beyond limits I originally thought I could master; someone who was able to get the ball rolling, to start getting things to happen for me, a truly overwhlemed caregiver. I owe the people who got involved so much gratitude. I am so grateful, and appreciative for the dedication of the entire lineup whose help was directed my way.

Thank you for caring.


Caregiver support to the rescue (c) 2021 Judith Allen Shone

Flowers from (c) Tatiana Mitrushova, see her shop @Mitrushova on Etsy