Inspired by A Stranger

“Oh, I suppose I will have to be a caregiver, but I don’t want to do it.” The young lady sitting across from me was responding to my explanation of how my life had been for the last seven years. We had just met in the lineup getting our coffees and were now sitting in a booth at the coffee shop.

Although I couldn’t stay long, she had asked me to sit with her as we finished our discussion. My new acquaintance seemed to want to talk to someone about dementia…or maybe she wanted to talk about not wanting to face it, I wasn’t quite sure.

“My husband should get tested, but I have not pushed for it. I stay away from telling him what to do; I let him oversee his health,” she continued in her defense, or was it guilt?

“He definitely has memory problems. His brother has memory problems and has been tested. And, yes, he has Alzheimer’s disease. 'Early stages,' they told us.” She knew something about it at least. 

But she seemed to be resisting, or in denial, or…she was young, so I couldn't really tell.

“I don’t know what I will do if my husband is diagnosed with dementia. I don’t want to spend all my time with him.”

I was surprised at her honesty. She obviously knew being a caregiver would require her time and commitment. Maybe her husband’s family’s experience had made her uneasy. I could tell she was struggling to tell me she just did not want to...what was it?...to give up her own life?...to have to think of her husband with an illness instead of happier moments?...to have to learn about a new phase of life she was unprepared for? I could not tell. I felt she wanted to talk, but...  Was it fear I was hearing?   

“We have gone to the Alzheimer Society for almost five years,” I just kept talking, hoping for her to see there was somewhere to get information. “After My Love was diagnosed, we were in a First Class together where we both learned what Alzheimer’s would mean, on a very beginner level. They have many classes, discussion cafés and support type groups you can attend that might help once you know for sure that your husband, in fact, has memory loss.”

How was I going to suggest she go to the Alzheimer Society, or any dementia focused group that might help her with caregiving, if she only suspected her husband had Alzheimer’s disease. How could I best help this person I had just met?

“You might contact the Society and they can give you recommendations if you want to start like that. No classes, just a short meeting. Information gathering is a good way to get something to think about. They won’t pressure you. But they can give you suggestions. It would be up to you if you want to follow up or not.”

I stopped. I felt I had already said way too much to this almost stranger. But I had seen this before. Spouses who didn’t know what to do, but who felt their loved one might be in the early stages of dementia. Spouses who, for their own reasons, didn't feel up to the task ahead. But this wife did not know for sure. I thought her soul was wrestling with her future. From my ‘just met you’ position, I could only put the path before her, but she had to take the first steps.

Since becoming a caregiver over seven years earlier, I had seen many spouses doing their best, exhausted from the unexpected tasks they had been tackling every day. I, too, had been uneasy about my future when we first learned of My Love’s vascular dementia and Alzheimer's. I knew the rocky road most of us experienced. I hoped what I had learned could somehow be beneficial to others.

I had reached a point where I wanted to help others who might be feeling like I had, alone and afraid. I had no family with memory loss. I had no family close by to help me. I was truly unfamiliar with what was ahead, the education I would need, the support I would beg for, the lifelines I didn't know existed. I recognized others might not want to become caregivers because they didn’t know what to expect; they still had to discover what made it a privilege.

And then, my appointment walked into shop. I waved. After a short introduction to this new maybe-caregiver, I left and joined my friend at another table for our meeting.

Those discussions with future caregivers would happen again and again, as I continued to slip into discussions with strangers. The more I realized they needed encouragement and at the very least, initial direction, the more I knew I had to help where I could.

Obviously, I could not be support for each person I met, but I might be able to help a greater number of new caregivers help themselves by reassuring them there was a way to be in a support group.

And that is how it happened!

This unintended meeting with my young coffee shop friend was the catalyst for the concept that later became the Accepting the Gift of Caregiving Support Group, a self-created group suggested for readers of the Is There Any Ice Cream? book.

You can read more on website

www.CaregiverAlzheimerStory.com, and click on the Discover Support tab. As it says on the site:

Welcome to Accepting the Gift of Caregiving Support Group.
    ...Put on the coffee; pour the tea
    ...Set out the nibbles or crunchies
    ...Bring your caregiver friends together
    ...Join each one on their caregiving journey

How you organize, where you meet, when you meet,
how long you talk, is up to the readers, the members of each AGC Support Group.

Do something each day that makes your heart sing. ~jas

Original Photo by rawpixel.com from Pexels

Beginning Life as a Caregiver

As we caregivers each walk our path alongside our loved one, we meet many people in various roles related to dementia. Some are related to teaching us, growing our knowledge base; some walk with us, going through similar situations; while others are identified with the care of those with memory loss.

Most we might otherwise never have known. The caregivers among this community are a special network of individuals, who with their loved ones, are walking beside us, just behind us or just in front of us, as our loved ones move along the memory loss spectrum, each at a different rate and each with a unique dementia disease(s).

There is common ground in experiencing some of the same new situations and frustrations that come with learning a new role. Few caregivers have specific training. Fewer know what to expect. It is refreshing to have caregivers close by who understand when unfamiliar behaviors arise, and even more, to know if they recognize a situation, they will respond without judgement. Support and friends who understand are essential lifelines to help maintain good mental health of any caregiver.

When we participated in the classes provided by the Alzheimer Society, we met so many compassionate caregivers and their loved ones . One such caregiver has walked the walk beside us, been in some similar situations, not always in the same classes but with similar responses to their experiences. Her words explain how she feels in her role.

I am pleased to introduce guest author and caregiver, Carol Craig, who shares her story, hoping others will feel a bit more familiar with their role.

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The Beginning of Life as a Caregiver

Ever since we got the diagnosis that my husband had mixed dementia -vascular and memory loss - two sayings my Mom always reminded me of was “God never gives you more than you can handle” and “there is always someone worse off than you are.”  I also have a saying I use myself and that is “take one day at a time.” It is not always easy but for me it helps.

No one prepares themselves for being a caregiver for a loved one. If you feel your general practitioner does not seem to be concerned and you feel your loved one may
have dementia, call the Alzheimer Society office in your area. They will help guide you as to how you can get an appointment with a specialist who can help you get a
diagnosis.

The first and foremost thing that needs to be done as soon as you know, or even before, when you suspect he or she has dementia, is to ensure your financial items are in order. Be sure that you have a will as well as Power of Attorney in place, since lawyers will not allow you to change your will if they know your loved one is even in the early stages of dementia, as we experienced.

The Alzheimer Society has many programs that are great for both the person with dementia and the caregiver. Programs such as Creative Expressions and Minds in Motion. There is a Social and Coffee session once a month. They also have many educational programs. Some programs you both can attend; others are either for just the caregiver or just for the person with dementia. The caregiver programs often
give you a chance to express how you are feeling, and quickly you realize that you are not alone on this challenging road that you are going down. You will learn what is ahead of you and how to navigate the system so you can get the assistance and help you will need.

We have been using the activity programs and education programs for over two years now and it has been good for my loved one and myself.

To be an effective caregiver, I believe you need to be educated. The Alzheimer Society is a good place to start. Caregivers help with things such as bathing, bathroom functions, feeding, grooming, taking medications, etc. We help our loved ones make and keep appointments with doctors, drive them places and be there for them. We try to make them have as easy a time as possible.

In summary, remember to enjoy the good times with your loved one and be patient with them. It is a lot to take in so take one day at a time and reach out to others for help as you must take care of yourself as well.  © 2019 Carol Craig

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As time goes on, we will continue to share stories from caregivers. Through their stories we will include various aspects of the role while helping bridge that gap between fear and acceptance. 

Caregiving is unique in that we share the role, but the role is rarely the same for anyone. It is the compassion and understanding that caregivers seem to possess that binds us. We welcome the new caregivers to the circle of care and encourage them to find support.

We look forward to seeing you here anytime you want to read about caregiving. If you have something to share about your journey, please submit a comment. As always, if you wish, sign up to receive notice of new posts in the box on the left or request in an email through the area at the bottom of the page on the left. You will have option to confirm your request after you send it.

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If you have not yet discovered support, the Accepting the Gift of Caregiving Support Group, may be of interest. (no cost to join or get questions.)  It is a direct result of the book, Is There Any Ice Cream?

See below, right for more information on the book or visit the book website to read more about how you can start your local support group and receive Questions for Discovery to begin your support search. 

Do something each day that makes your heart sing. jas

Couple photo by fotografierende from Pexels   Support Group logo by author.