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Judith Allen Shone, caregiver, author.
November 10, 2019

Nightly Visitors

“Where did they go,” I hear coming from the living room.

Stepping from the kitchen to confirm whom My Love was talking about, I asked him, “Who? Where did who go?”

“They were just here. The two that were over there,” he tells me, pointing toward our entry hall. “They just stood and looked at me.”

I walk around the corner to peek into the hallway. No one there.

“Can you tell me who they were? What they looked like?” 

I again tried to see if there was some recognition of anyone he could tell me about.

“Not really,” he says. He looks sad that he can’t remember. “I thought I had seen them before,” he says to be sure I know he had seem someone.

“Well, it looks like they have gone for now. Call me in next time you see them,” I say, hoping not to alarm him in any way.

Hallucinations have been coming just around dinner time, the same pattern, almost the same routine for a couple years.

I recall My Love’s first shadowy sightings in the night. He woke me up to tell me someone was outside our window. I tried to convince him it was the varied thickness of the gathered drapes causing dark and light shades of gray, but he was sure that was not what he saw. I used to get up to look and suggest whoever it was had gone by the time I got there. It would not have meant a thing to remind him we live on the twelfth floor in our building!

At first, before I realized hallucinations could be part of dementia, I was not sure what to think. Luckily, among my lifelines, I have had a counselor whose wisdom has carried me through many uncertainties. With her explanations and her guidance related to my responses, I feel confident about my safety and My Love’s hallucinations.

If I can leave caregivers with only one piece of absolute truth, it is find support and lifelines to accompany you on your caregiving journey.

Over the months, various people have visited My Love as ‘imagined’ figures. His brother has come most often. His daughters were here one time. He recognized those family members. But the other ‘guests’ who appear each night seem unknown to him by name. He has told me he thinks he has seen them before, but he seldom can describe them, and a name never comes.

Alzheimer’s Association (alz.org) briefly explains hallucinations:
 

“When a person with Alzheimer's or other dementia hallucinates, he or she may see, hear, smell, taste or feel something that isn't there. ….caused by changes within the brain that result from Alzheimer’s…. Some hallucinations may be frightening, while others may involve ordinary visions of people, situations or objects from the past.”

My counselor is keen to tell me, over and over, when something new happens, seek medical help. Let the doctors assess the situation. Let them put the puzzle pieces together. I know the drill now, but she still says it often. I know ‘see his doctor right away’ is among the most valuable advice she offers.

“I can’t tell you who it is, but I know someone was there,” My Love wants me to know he really saw someone.

I affirm again, “I don’t see anyone, but I understand you saw someone.”

Sometimes I walk over and take his hand while this slight change in behaviour is going on.  Other times I notice the lights are dim in the room and casually turn more on, reducing shadows. At times, I change the subject, or suggest he get out his paints or draw. I walk over and put on some music. I distract him. And sometimes it works. 

Other times, I acknowledge “I know they’re gone,” while I stay calm and vigilant until he brings himself ‘out of it.’

I never doubt him or that he saw something.  I know it is possible. That is all I need to know.  Hallucinations can relate to other diseases besides dementia or Alzheimer’s, so it is important doctors know what is going on. 

After the doctor, too, knows this is happening, after he advises me, I feel comfortable with what to do.

I do not doubt My Love. I assure him I did not see his guests from the kitchen. But just to confirm, I add, “it looks like they have gone now,” hoping to alleviate any fears he might have. I never know what triggers these visits. I have observed they are appearing regularly, right after his third anxiety attack of the day, timed right as dinner is being served. Response to medication?  Perhaps, but I am convinced his brain is still ‘boss.’

Each night I check if there seems to be fear in his voice. I evaluate if he senses danger or if I do. If there is no type of threat present, I take his hand and sit with him. I know that when I sense danger, to call for help.

These are among the times for which I was totally unprepared. These are the times I am glad for the classes and counselors at the Alzheimer Society. I know I am not a professional. 

There is a COAST group (Crisis Outreach and Support Team) in our area to call and get guidance – in real time. Check what services are in your area to help caregivers with memory loss. Put that phone number on speed dial.
  

Your police department also may be able to guide you.

Once you speak to the receptionist at COAST, and if they ascertain that more help is needed, they will call 911.

Be sure to cover this emergency topic, role play even, with your counselor or support team. If you, as the caregiver, feel in danger, leave the scene. Call 911 to get help. Do not put yourself in danger.

The message...be prepared as much as possible. Take classes. Find support.

And now I must stop because, in his effort to help, My Love has just poured the dog's food into her bowl with water in it. Be inspired to love!

                                       Do something each day that makes your heart sing. jas

Photo by Pixabay from Pexels  

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Where Do the Missing Words Go?

“Look at those….,” My Love pauses.  “...up there….” He points toward the blue sky as we are driving to the store. “Oh, you know, don’t you? Those…those squares. They are so… so…. rubbed”

There he finally said his words. He knew they weren’t the words he wanted. He just couldn’t find the word “clouds” or “pretty” to finish his sentences.

How does one with dementia remember he can’t remember? Especially, since for the last few years, he has had Anosognosia: ‘unaware of memory losses.’  I am not used to his recognizing that he has forgotten memories. Yet, he remembers he has forgotten words. Oh, what a crazy disease!

My Love has progressively been having ‘word finding’ issues for nearly two years, with words seeming to be buried deeper and deeper with each new month. Or do words dissolve and vanish?

“I am going to…” and he points.  Isn’t that rather normal? Don’t we all do that from time to time…forget a word or shorten a sentence?  Don’t we us a physical gesture, a pointed finger, to indicate “down the hall” or “to the bathroom?”

But this is different. He can’t find the word to finish a sentence, so he points. He can’t find the words, so he plays charades. He even stands up sometimes to act out what he is trying to say. The words sometimes never come, not even if I wait.

Eager to ‘get on with it’ I sometimes do forget and interrupt his ‘trying to tell me,’ but then, unfortunately, I get his mind off track. I am trying to stop doing that. He does better if I just watch and listen, if I respond when he looks at me to inquire if I understand, or when he’s ready for me to insert a word for him. 

I realize that sometimes silence can allow a word to surface, although I am not convinced it is noise or confusion in the room that makes My Love forget. At this point along his Alzheimer’s spectrum, I believe he would have issues finding words if he were alone in a peaceful garden.

“Where are those…who were just here?” he asks me, referring to the people who apparently visit us nightly. He seems only to ask after they are gone.  They can’t be real, yet he sees them. And I can’t determine if he really sees them or just senses them. Are they hallucinations?  I suspect his Alzheimer’s brain won’t hold onto the memory long enough so he can tell me what he saw.

I presume My Love is speaking of imagined visions because I saw no one. He never has found the words to describe them. Is it the words he has forgotten or the visions? Or both?

At first, I quizzed him about the appearance of the visitors. Did he know their reason for being here? Did they have any conversations? He could not tell me. To me, they seem like the nightly monitor who comes around to check on him. I know they will appear and leave, and he will be able to tell me no more about them tonight than last night.

“How long will you be here?” he asks as part of the same nightly routine.

“I will be staying here. I live here with you.” I say, almost routinely now.

“Here? You live here” he asks each night, as if he had just learned it for the first time. “Where do you sleep?” He always worries about where I will sleep.

“I will sleep where I always sleep, in our bed.”

That seems to settle him, but he still has a quizzical look on his face. “You sleep in the same bedroom where I do?” he asks.

“I do.” I know he no longer recalls my name, only that he feels comfortable with me.

He nods his head telling me he understands. He never tells me if he recognizes that I am the one who has been with him for twenty-six years, but I don’t go to that conversation anymore. He doesn’t recall too much about me or us. Our history story seems to mean nothing to him.  Does it matter?

He sits quietly. I ask if he wants to go outside for a walk. He shakes his head no. I lift the remote and ask if he wants to watch the TV. He shakes his head no.  I ask if he wants to paint.  I move to get the paints and table out. He shakes his head no.

Each time I ask, he shakes his head. When I ask if he would tell me something he would like to do, he shakes his head no.  Where do those words go? Why does he not try to respond with words?

I sometimes think he is depressed, and yet, if I suggest the trash has to go down to the dumpster, I can hear him from the next room, nearly yelling to me, “I’ll take it down for you,” and he is up and in the kitchen looking for the key in minutes. I do not understand him or this disease.

I moved my computer and office boxes to the dining room and now spend my office time there instead of in a separate room.  In my dining room office, I can be near him, easily see him, be aware of his needs and know his situations. I can write, my journal notes and my stories, while there, but most importantly, he will know where I am.

Being close makes me more aware of his loss for words. No one used to have to put words in his mouth in a discussion. But now I notice, our chats have dropped off from one or two words to almost none. Even if I pick a topic he used to love, like boating, he has one or two words, but more than likely he has a familiar phrase, one of his scripts, “yes, maybe,” or “I guess” to add, nothing more. If I describe an event from his boating days and try to draw him into a discussion, he might add, “well, maybe,” or “yes,” or “I don’t remember.” He rarely adds one more sentence to our ‘conversation.’ His memories and the related words seem to have vanished.  Where do those thoughts and memories go?

Every day I hear more silence than words. He used to at least tell me where he was going when he got up from the couch and went…somewhere. Now, he gets up, looks at me and points. His words are gone, or he doesn’t try to find them. I have not figured out which.

I respond, “You are going to the back to get a sweater?” and I wait to see his response. It will be a gesture, no longer words, that confirms if I guessed correctly.

When he wants to go outside to sweep the balcony, he asks me where his gloves are.

“Beside the door, on the windowsill.” I watch as he goes to the sill beside the door and picks up the binoculars.

“Not the binoculars, but the gloves right beside them.” I guide him, hoping he sees the gloves.

He picks up the paper towel roll.

“The gloves are on the end,” I continue to use words to help him find what he wants.

He picks up a roll of pink doggie bags for picking up doggie doo. 

“The gloves are right by the door,” I say one last time, getting up to walk to the door to show him. He has no idea where the gloves are. At this point, I am not sure he knows what he asked for in the first place. I get to the door and reach for the gloves.

“Oh, I didn’t see them,” he tells me. “I didn’t know that is what they were.” Was that a cover up?

Confirmed. I don’t’ think he connected the word gloves with the actual gloves. So, here was a reversal of his not finding the words to express his thoughts.  Here he was having trouble finding ‘reality’ to go with the words. I said the words, but he did not connect. His word-connection is disconnected for sure.

~

A couple weeks ago I became painfully aware of his diminishing use of vocabulary. His inability to find words blared out at me in capital letters. DO-NOT-LEAVE-ME-ALONE-ANY-MORE.

I had gone to the pharmacy, no more than twenty minutes, to drop off his meds for the pharmacist to put in his blister pack. 

I have been leaving him regularly for short periods, once in awhile, albeit for shorter and shorter time spans as time has progressed. I left quickly, telling him I’d be right back. He agreed he’d go nowhere, but wait on the couch.

On the way home I noticed he had called me several times on my phone, which I had forgotten to take off airplane mode. Waiting for the elevator, I called him to see what he wanted.

“Are you coming to get me?” he asked.

“Where are you?” I asked him back, not sure where he’d be if he asked me such a question.

“I don’t know where I am. I don’t know if you can find me.”

Those few words threw me off guard. I thought he was going to stay home, or maybe walk the dog, which was only round the garden path and back inside.

I asked myself if I could find him, in a place he did not know where it was. My mind started to race. I thought of lots of places he could be, but they had to be somewhere he didn’t recognise…all of a sudden Warner Brothers couldn’t have had more creative minds working for them. I thought of all sorts of places he might be.

I asked him, “Can you tell me what you see?” thinking if I knew what was near him, I ‘d know where he was.

“I see the boats,” he told me. Well, that was a start. He was near home. We live along the river where many boats are docked.

“Can you tell me where you are?” I asked.

“I don’t know, and I don’t think you can find me.  Someone put me here and told me to stay, that they’d come back for me, but they aren’t here yet.”

“Can you tell me what you see nearby?” I asked again.

“Two tall white things,” he said. “You know them. About forty feet tall.”

I didn’t know. And at that moment, forty feet did not mean elevators to me. His lack of word finding was not helping me find him. He could not tell me where he was, and my guesses were coming up empty.

In time I called 911, got the police to help me search for him. I worried My Love’s phone battery would die and he’d be gone forever. But after I suggested to My Love that he come to the front of our building, he eventually did. That is another long story, but he did walk out from the side hall of our building.

He had been seated on the couch. The phone was beside him. He was waiting for me. I was the person who told him they’d be back, I was the one who told him not to leave home. He could not find the words to tell me he was in our apartment. He could not find the words to tell me he had gone nowhere. He knew only that he was alone, afraid, and wanted to be found.

I will not leave him alone again, ever. 

I wonder now how our life is going to be going forward with fewer words? I cannot be gone from him if he is by himself. 

Readjust, recalculate, rethink…

I still wonder where do the words go?

Caregivers have no warning what is coming next. Thankfully, I got basic education from an Alzheimer Society, but a four-day course did not make me a ‘trained’ caregiver. My best teacher has been our experiences. I share those here. 

In this writing, I share the type story that might be found in the books, “Is There Any Ice Cream?” available online at booksellers. Or Part Two, “Did You Hide the Cookies?” to come in 2020.  ...stories of My Love and me. 

Photo by Pixabay from Pexels  

Click on 'comment' if you wish to add a comments. Thank you.

Fundamental Support for a Caregiver

No matter who we are, we can bolster the spirit of caregivers!

How often do we walk by someone and say, “Gee it’s too bad someone isn’t helping that poor soul?”

How many times do we look the other way, so we don’t have to respond with assistance for someone who really needs it?

How many times do we ask caregivers how they are, and when their response is “I’m fine,” we stop there? Even knowing there is truth beyond the common response, we don’t seem to want to hear.

We've read caregivers are the unsung heroes of the ever-increasing population of those with illnesses, and especially those with dementia. Their loved ones have professional help, yet the caregivers who are carrying the full burdens everyday are without the same professional care.  They need our support when we can give it.

Although there are many ways we can support a caregiver, let's consider here just the very basic situation of helping them get connected to ongoing relief and assistance.

Many times, caregivers don’t ask for help, yet desperately need it. They may be shy or embarrassed, they may be floundering in inexperience or have been silenced by the stigma of having to ask for a helping hand. 

They may not even know what it is that they need, or how serious their need has become. Many have no idea where to go or whom to ask for help.

If we can recognize in someone that there is a need for assistance, we can ask them, “In what ways might we help?”

Even if we don’t have the answers, we can take the time to point the caregiver in directions that might manifest the help they need.

There are any number of support possibilities we can be to a caregiver struggling with one of the most difficult of roles, caring for another human being. The illness requiring such full-time assistance could be any disease, not just dementia. And it appears the stresses cause similar needs for respite across the board.

When we offer to help, we can preface with a statement saying we are not sure how much help we will be, but we can try to do something. If we stay within that limitation we can guide caregivers to someone else who might help.  

We can suggest organizations the caregiver might call, depending on their urgency and distress. Or we can make the call to that group and suggest someone call the caregiver for an assessment of the situation. The caregiver might be able to continue searching for help from that point. 

Support does not mean we are available-care 24/7 for any caregiver. But finding someone qualified to offer a few hours respite, even just once, could mean the caregiver could take a nap, go to the store, or see a doctor without worrying about the loved one during that period.

Some caregivers cannot go anywhere without their loved one for many reasons, so they either take them with them or stay home. That period of time offered can be helpful and greatly appreciated.

Many caregivers live in fear because they do not know who to call to get help, especially if they are on their journey alone. At the very least, we could try to get them connected to a lifeline support group. Those new contacts could move the caregiver out of the danger zone into a more manageable realm.

If, after we ask how we can help, and the caregiver does not know, we can brainstorm to generate ideas of who can help...even a neighbor who might get involved for a few moments. Keep notes for future emergencies.

It is more difficult when the caregiver does not know what they need. Generally, that is when the professional support team, a medical or psychology team, a specialty group related to the illness the caregiver is dealing with should be called in, but by the doctor or another lead person in the caregiver’s chain of care.

In a support role we might not have to do more than help figure out what might be needed and then suggest the appropriate organizations that give the type help the caregiver requires. We might also find someone else who can step in and carry on where we left off. We, alone, can do only what we can for them.

If we have more time or more specialized training, then we might have better resources to draw from and more advanced skills and knowledge that could be useful at this point.

We can always add to these gathered resource lists, but they are helpful to have handy.

Places and people who might be helpful to one who is supporting a caregiver, might include:

• Disease or health organizations or societies, local or in neighboring cities. Phone them or email from their website ‘contact us’ page, depending on the urgency.
• Local university departments that could recommend or make suggestions. A quick phone call might be all it takes.
• Doctors’ offices for the type diseases being discussed might have suggestions for organizations who could be helpful.
• Librarians might answer questions and be able to point us in the right direction.
• Government offices, at local, provincial or state, and national levels that are related to a health sector might be aware of helpful resources.
• Churches sometimes are tuned in to different services for various diseases. A call there might find yet unconsidered resources and help.
• Friends and neighbors are a great source for information. If we are caring for a caregiver who has a need we are unfamiliar with, ask our friends. This is one time the grapevine comes in handy….one knows someone who knows someone…we likely will find the right resource to help…if only bit by bit.

Once support and relief are organized, the caregiver's confidence level generally resumes, and their caring abilities are strengthened. 

In small ways, each of us can be the one to revitalize a caregiver's courage and to inspire their continued success. 

We can be the ones to provide reassurance, helping them to bridge the gap between fear and acceptance, between dread and confidence.

Even though these steps are for introductory type of support, each one of us can give ongoing encouragement and be an inspiration to a caregiver when we are able.

Do something each day that makes your heart sing. jas

 Photo by Matthias Zomer from Pexels  

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.

~ ~ ~

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

~ ~ ~

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.

Plan C for CaregiverCare

Wizards! Miracle workers! Enlightened geniuses!  Vessels of kindness! Treasures of the Universe!

Caregivers are amazing. They endure long days and longer nights, sometimes without a break or a nap. They hold the family together and hold their loved one close. I am honored to walk among such awe-inspiring individuals. Male or female, spouse or child, friend or service worker, I have come to recognize that anyone who gives care is one of the most extraordinary human beings on the planet.

Most caregivers came to their role from a ‘normal’ life, where loved ones did things on their own ‘before,’ and caregivers played a different role, perhaps wife or child. That was Plan A. But in time, those distinctions changed and the role of caring for another, for whatever reason, become the dominant focus from then on. Those changes became Plan B.

Always on high alert, ready to be there when the ‘call comes,’ when the walker breaks down, when the shoes are untied, when the shower mat slips, when a loved one rolls off the bed, when the loved one has appointments to attend, caregivers pull up their compression socks, unfold their canes; hop into the phone booth and put on their cape. After checking their 'toolbox,' they are ready to 'role.'

When clothes get lost under the bed, shoes end up in the wastebasket, caregivers take it in stride, get it right and move on. When trash is dumped in the tub instead of the dumpster outside, they close their eyes, count to ten and clean it up. When their loved one begins to look for the bathroom in the linen closet or pantry, caregivers rise to the occasion and, even though they are tired, gently give guidance. They know their loved one with dementia needs help just with living.

Rather than waiting to see ‘what happens next,’ caregivers orchestrate the scenes; their intention is to control the situation. Desperate for respite for themselves, they ‘arrive at work,’ prepared from sunrise to sunset, and sometimes on through sundowning, experiences. Even after bedtime, caregivers are on high alert, ready to step in and manage their loved one’s increasing unfamiliar situations…in some cases, situations unfamiliar to both.

How do caregivers know so much? When did they learn these things?

In most cases, classes offered by organizations focused on dementia, are the best help a caregiver can get. Different groups offer various type sessions and depending on the timing, usually benefit caregiver support and families as well as caregivers.

In our area, the Alzheimer Society offers a catalog schedule of classes and programs for each quarter of the year. Look online or call their offices. There are classes in some areas just for families and support workers. Then classes for caregivers and support, all from different perspectives. Having family members take classes means caregivers have someone else ‘caring from the same page’ as they work through their tasks. Highly recommended.

Gathering with other caregivers in support groups or personal meetings or social activities serve to reinforce what each one has learned. In such situations, they can double their value and leverage their time by learning from one another. Caregivers not only need support, they also give support. Acclaim Health, in our area, is involved in respite and information as well support for caregivers. Caregiving is is a demanding role. Support is essential.

But what happens when the day comes - and it only has to be one day - when things fall apart?

What does a caregiver do when the plan for driving to a class is interrupted by a flat tire, with no one to call? What happens when a doctor needs to see the loved one right now and your transportation is not coming for two hours?

What happens when a caregiver arrives at a scheduled appointment only to find it was an hour earlier, but the appointment is necessary because outside care service for the loved one was already arranged?

What happens when caregivers think they are winding down before bed and their loved one begins to have hallucinations for the first time and this type situation was never rehearsed?

Education, rest, action, rest, education, rest, action, rest.

That has been my intended formula. It does not always go like that…sometimes a couple of the ‘rest’ periods get overlooked, or the education comes later in the schedule, even though it was needed sooner. The one thing we do know is that action will happen, ready or not.

I don’t know what the agencies or professionals would say, but if I am not at full steam, I am worthless as a caregiver. Rest is important. Health is really important.

Where do caregivers get their energy? What keeps them going?

At some point the energy needle points to zero, indicating a fill-up is needed. At other times, a rest is necessary to get beyond exhaustion. Caregivers don’t always have energy. Superheroes need a break to refuel, too.

Caregivers need a Plan C – Caregiver Care for their caregiver life!

If you are a caregiver, find time now and spend one hour beginning to think about a plan. On a piece of paper, draw columns. Label them:

     Action Cancelled,

     Replacement Suggestion

     Lead time

     Contact,

     Phone

     Cost

     Benefit

 

        

If you use computer spread sheets, you can always add another column if you need one. Make the list meaningful for each person. Keep the form on your computer or put it in a notebook with other resource materials…your Plan C will grow.

Include your family, your friends, service personnel, resources you learn about in your classes, from your various groups, from organizations. Know the lead time required and financial limits for each replacement. Record a contact to call with their number. The Action Cancelled may be less important than the Replacement Suggestions. The suggestions can be multipurpose and replace more than one type of activity. Include 911 and the COAST (Crisis Outreach and Support Team) phone numbers, or similar for your area, so they are ready options when you are making decisions.

Learn what each replacement can and cannot do. Get to know service contacts. Have a neighbor emergency person if possible. Include friends who will meet you for lunch if your loved one is safe with someone else or in a program. Know your friend with the good listening ear to call when frustration sets in. Consider walking buddies, exercise classes, emergency health phone line. Add who to call when you need a ride, when you need a delivery, when you need food. Who can do laundry? Housework?

You may get sick…what then? Include outside services as well as family assistance. Include caregiver care as well as care for loved one. Brainstorm now so when you need it, the plan is ready with resources.

In the benefit column a reason for replacement can be listed, or the person who will benefit. Both will be important when the time comes. Add what makes the list more meaningful and functional. But begin to build it now, as your journey begins. Keep it always. It will turn out to be priceless.

Your list will become your valued Plan C – Caregiver Care.

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

Illustrations purchased from ©Gstudio Group, Fotolia.com