When Caring Takes Courage: A MUST HAVE Caregiving Guide

06 Saturday Sep 2014

Posted by Ann Napoletan in Books, Caregivers, Giveaways, Helpful Resources, Tips

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Alzheimer's books, alzheimers, caregiving, dementia, mara botonis, when caring takes courage

9/21/14 – Thank you to everyone who entered! The randomly chosen winner of a copy of When Caring Takes Courage, by Mara Botonis, was “Linda.” Linda, please look for an email from me!!

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As I sit down to write this long overdue piece, I can’t help but be struck by how many wonderful people I’ve met through dementia advocacy. It’s safe to say that as a whole, these are some of the most gifted and compassionate human beings on the planet. Each has a unique story, but those stories are the common thread that creates such a bond between us.

Mara Botonis falls into that category. To be honest, I don’t recall exactly how we first crossed paths; however, I do know we were instant friends. I’m grateful that social media provides an avenue for meeting people all over the country – and the world, for that matter. Continue reading →

Caregiver Coping Strategies: Making More Time for Moments That Matter

05 Saturday Jul 2014

Posted by Ann Napoletan in Activities for Your Loved One, Caregivers, Expectations, Guests, Helpful Resources, Humor, Tips

≈ 3 Comments

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alzheimer's joyful moments, alzheimers, alzheimers activities, caregiving, dementia, mara botonis, when caring takes courage

A big “thank you” to Mara Botonis for her 3-part series entitled, In this final installment, Mara discusses a topic near and dear to my heart – Making Time for Moments that Matter. As caregivers, we’re often so overwhelmed with details, logistics, and never ending to-do lists that we lose sight of what’s important.

Years ago, my daughter gave me a copy of the book Creating Moments of Joy, by Jolene Brackey. The book reminded me that despite the hand we’d been dealt, I could still create beautiful moments of joy for my mom (and myself). You see, dementia is about moments in time; it’s the ultimate lesson in appreciating the present and “being here now.” While your loved one may not recall the experience tomorrow (or even in an hour), in the present moment, he or she is happy and that’s all that matters.

Mara Botonis is the author of “When Caring Takes Courage”, available on amazon.com. She is also the founder of Biography Based Careand is a strong proponent of person-centered care. You can learn more about her work at http://biographybasedcare.com

Caregiver Coping Strategies Part 3 of 3: Making More Time for Moments that Matter

by Mara Botonis

As a caregiver, so much of your day is necessarily about the tasks, the “to-do” list. It’s normal and completely understandable that those day-to-day, “have to do” tasks have become the day’s primary focus.

Some family caregivers wake up each morning with a prioritized plan of how they’d like the day to go. The execution of duties like ensuring that medications are taken, showers or baths are given safely, toileting accomplished, laundry, meals, dishes and appointments are taken care of and that adequate supervision is provided at all times for their loved one, often 24 hours per day, become the daily priorities. The new normal may feel a lot like just getting through our day and all that it entails.

That “to-do” list (either recorded on paper, computer or kept mentally) is never far from most caregiver’s thoughts. Some review it in their minds as the last thing they think about before retiring each night. Weighing what was accomplished and what wasn’t. Reflecting on what they did do, didn’t do, what did get done, could’ve gotten done or should’ve been done in a kind of self-imposed audit enacted by internal order to measure and gauge their level of success or capability as a caregiver when often the only witness to their efforts is no longer able to recognize or appreciate all that they do.

While meeting your loved one’s health and safety needs are of utmost importance, there are other aspects (Spiritual/Calm, Emotional, Sense of Purpose, Social, and Intellectual Engagement) of their care as well, that, when met, can have a very positive impact on their quality of life and yours.

If you are like most caregivers I’ve spoken to over the years, you agree with the idea of spending more quality time together, but wish you had the time and energy to do so. Below are some quick tips to help you carve out more space in an already overcrowded day to make time for moments that matter.

Use a calendar to organize the day. Pencil in blocks of time, even if it’s just 10 minutes to engage in something fun (music, reminiscing, looking at photos, gently massaging your loved one’s hands or just talking without the pressure of a coherent conversation). With Alzheimer’s/dementia, the only thing we can plan on, is that most times nothing will go exactly as planned. However, having a plan does help. It can better help you get back on track and minimize the disruptions to your routine when they occur (and disruptions will occur).

Put laughing ahead of laundry (at least sometimes!). Part of your daily goals should include at least one activity or interaction designed just for fun. Your loved one has likely lost the ability to self-initiate the satisfaction of their own needs-including the pursuit of pleasure or fun. Try making a fun interaction as much of a daily priority as medications, toileting and meals. Try it for just one week and see how it goes. Making it important to you increases the chances that it will happen for your loved one. Bottom line, if you don’t make it a priority, it probably won’t happen.

Put the past in the past. Hands down, one of the saddest things I’ve heard from families about the reasons their loved one “just sits there” or “doesn’t do anything anymore” surprisingly wasn’t related to the disease process. When I dug a little deeper, I learned it was often because their well-meaning but overworked caregivers just stopped trying to engage them in activities for a variety of very understandable reasons.

Try to objectively look at any barriers on your end that may be preventing you from facilitating fun activities and interactions. There are a lot of potential barriers to having the strength and energy to put on your “pom-poms” yet again to cheering yourselves on and up by dreaming up new and different activities to keep you both connected and entertained. Maybe your loved one lacked interest last time you tried to engage them in an activity, maybe you were just too exhausted, maybe your feelings were still hurt because of the way you were spoken to or treated yesterday. Perhaps they may not have appreciated all that you tried to do in inviting them to participate in something you really thought they might enjoy, only to be rebuffed. Maybe in that moment, whatever you were trying just didn’t work.

This is where you wipe the slate clean and remember that what happened yesterday was yesterday. Your loved one may not even remember what was said. They are probably completely unaware that you are harboring some hurt on account of their behavior. Don’t get discouraged. Today is a new day. A whole new chance to begin again. Don’t let past practices prevent future successes. Keep trying! Attempt different activity ideas, alternate times of day, and change approaches. It’s okay to keep starting over.

Attitude is everything. Look for ways to make the mundane magical. Have a plan for when you feel that you are starting to get stressed out and feeling overwhelmed. “Stop” and do something fun for a few minutes. Think about all the people you have met over your lifetime. Do you remember special family, friends, schoolmates, neighbors, teachers, and others you’ve met over a lifetime? Chances are the ones that stand out, your favorites, are remembered that way not because of what they did for you, but because of how they made you feel.

We remember the kind of person who makes going to the grocery store a grand adventure because when you’re with them everything seems more fun. We cherish this kind of person. Who never makes you feel like you’re a bother, the person who looks forward to seeing you every time you meet and the person who loves you unconditionally and thinks that you can do no wrong? Who wouldn’t want to know and spend their day with a person like that? Do you know a person like that? Are you a person like that? It’s okay to be a bit whimsical, a little silly and a whole lot ridiculous sometimes. Look for fun wherever you can find it and try to find the humor in all things. Be the person you would want to spend your day with and your loved one will have a better experience with you and you with them.

Start small. Have reasonable expectations. Instead of trying to meet one need from each spoke each day at first, try picking one per day. Always try to set aside 10-15 minutes per day for an enjoyable activity. As you find what works best for you and your loved one, you can gradually start adding additional times for activities. Remember, this is for fun…not an obligatory “to do” list but rather a “let’s see how many ways we can find to play today” list.

Make what you’re already doing an adventure. One of the easiest ways to create more meaningful and fun experiences for your loved one is to turn your everyday activities into something exciting. Asking your loved one for help, adding their favorite music or foods can make every day routines something to look forward to. Think of ways to make tasks into games, outings into adventures and chores into cheerful choices of things that they want to do rather than tasks that you feel you have to accomplish.

Look for ways to build in positive reinforcement. Praise and recognition can make anything better. When one feels like there is no way to do it wrong, fail, or embarrass oneself, you are more likely to try new things or enjoy ones that you may not be as good at as you once were. Creating a space of unconditional acceptance means a better experience for both you and your loved one. If things spill, break, or don’t go the way you thought; it’s okay. What matters isn’t what you DID but how you both FELT. If the cookies you made together burnt or tasted terrible because too much salt was added to the batter, no problem. Focus on the fact that you both loved licking the spoon or eating the dough beforehand, that’s a success! Find things along the way to compliment and celebrate. Thank your loved one often for their ideas and contributions.

Find ways to be flexible. Your idea of an activity may be very different than what actually happens. Okay, you’ve got the puzzle pieces out or have lovingly found a stack of old photo albums and you’re ready to reminisce or play. But…you’re the only one that seems to have any interest in that. Instead, your loved one is more interested in staring out the window, picking imaginary lint off of their pants, or looking for their car keys. Alzheimer’s is unpredictable. Go with the flow. Find a way for you to fold into what they are doing or what they are interested in instead of trying to force them to do what you want them to do.

If they are staring out the window, put on a nature CD with bird songs, get out a bird book or magazines with pictures of nature. Go for a short walk outside, fill the bird feeder or take them with you to check the mail if weather permits. If they are fussing with clothes, use it as a chance to change outfits or offer a bathroom break. They may be signaling you that they are uncomfortable in their clothing (let’s go pick out something different to wear) or they have to use the bathroom or that they’d just like to do something with their hands (get something soft out for them to fold and touch). Let them lead you with the cues they are giving based upon what they are doing, or saying and learn to use that to support their unmet needs in that moment. That’s an activity and that’s okay!

Set about seeing the successes in front of you. The very act of your loved one sitting near you, talking with or looking at you is an indicator that they are interested, engaged, and enjoying being with you. What words they use or what they do isn’t as important as how they feel. The fact that your loved one wants to interact with you is what really matters. They may not always be able to tell you or show you how they feel about you the way they did in the past, but these moments of little connections with each other are symbolic of a greater love. Being together, being happy no matter what you are doing or saying is a success in itself. Right then and there, that’s an out of the park home run!

If you didn’t finish, don’t fret. What if your loved one walks off seconds after you start what you’re sure was going to be a really fun activity? Or what if they start an activity and a few moments into the interaction they retreat to a place you can’t reach them? It’s okay. Focus on the time you had that you both felt connected, that they did participate. Make a mental note about what worked. What time of day, or circumstances surrounded the parts of the activity that they liked the best? What did the house sound like, smell like? What things did they show the most interest in and when? If the only part of making cookies together they seem to enjoy is stirring or putting their hands through the dry ingredients, then don’t feel like you actually have to bake the cookies. There is nothing wrong with only doing the parts that they enjoy.

“Shop” the supply store in your house. We all have closets, drawers, attics and garages full of everyday items that can be called into service when it comes to creative ways to engage your loved one. There are many organizations that make a big business out of selling very expensive, pre-packaged special activity supplies for persons with Alzheimer’s/dementia that support sorting, reminiscing, and fun in a way that engages your loved one physically and cognitively. However, you don’t need a set of colorful wooden blocks, plastic shapes or a special set of books and puzzles to play a game. The truth is, a lot of what you can use to engage your loved one, are items you already have around the house. The added benefit that these items may be familiar on some level to your loved one because they belong to your home and are a part of your shared history only makes it more meaningful.

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How do you create “moments that matter” with your loved one? We’d love to hear your ideas.

If you’ve enjoyed Mara’s series here on The Long and Winding Road, stay tuned! In the coming weeks, I’ll be reviewing her wonderful book, “When Caring Takes Courage” and giving a copy to one lucky reader!

Caregiver Coping Strategies: Getting away from Guilt and Grief

28 Saturday Jun 2014

Posted by Ann Napoletan in Books, Caregivers, Grieving, Guests, Guilt and Regrets, Helpful Resources, Tips

≈ 7 Comments

Tags

alzheimers, alzheimers guilt, caregiving, dementia, grief, grieving, mara botonis, when caring takes courage

I’m happy to bring you Part 2 of a 3-part series entitled The Dangerous Dance with Stress and Guilt, by Mara Botonis. Mara is the author of “When Caring Takes Courage”, available on amazon.com. She is also the founder of Biography Based Care and is a strong proponent of person-centered care. You can learn more about her work at http://biographybasedcare.com

In this second installment, Mara discusses two topics that have likely affected all of us at one point or another – guilt and grief. Perhaps the most important message here, “It’s okay to feel your feelings.”

Caregiver Coping Strategies Part 2 of 3: Getting away from Guilt and Grief

by Mara Botonis

The constant struggle to cope with our grief and our guilt can be just as consuming as all of the actual caregiving responsibilities we have, and often times, far more painful. There are two types of grief, anticipatory grief and ambiguous loss that especially resonate with caregivers of persons with Alzheimer’s and dementia.

Anticipatory grief is defined by the American Medical Association as: “The normal mourning that occurs when a patient or family is expecting a death. Anticipatory grief has many of the same symptoms as those experienced after a death has occurred. It includes all of the thinking, feeling, cultural, and social reactions to an expected death that are felt by the patient and family. Anticipatory grief includes depression, extreme concern for the dying person, preparing for the death, and adjusting to changes caused by the death.” Anticipatory grief may be a more common occurrence in long or protracted illnesses such as Alzheimer’s or dementia as caregivers fight against a progressive disease from which there is no cure.

The other type of grief common for Alzheimer’s caregivers, Ambiguous Loss is; “characterized by the sensation of loss one can feel when the person you care about is psychologically absent, that is, emotionally or cognitively missing. Such ambiguous loss can occur from Alzheimer’s disease and other dementias as a loved one’s mind or memory fades away.” We know this one all too well, the fact that many times, the very person we spend our whole day taking care of often has no idea who we are. Our shared history, common experiences and years of connection have disappeared into a mind we can no longer access. We look hopefully upon a familiar face that we constantly scan for a glimmer of recognition, only to be hurt time and time again when it usually isn’t there.

The sad reality is that we are fighting a disease without a cure and the added challenge of feeling so alone at times when doing so can make being a caregiver of a person with Alzheimer’s or dementia an especially emotionally draining and potentially isolating. Sometimes, it may feel as though these feelings are so strong that they have the power to swallow us up and that if our loved one didn’t rely on us for daily care tasks, it would be easier to simply curl up in a ball under the covers and wish this away or hide from the situation until it goes away.

There isn’t a magic bullet, or easy answer to help us release the guilt or grief, and I’m not sure we need one. It’s okay to feel your feelings.

Here are some tips other family caregivers have giving me over the years to help decrease the stress and guilt and increase their ability to help their loved ones and themselves have better, brighter days.

1) Stop measuring your worth by what you did or didn’t get done. Stop beating yourself up because of what you said, or what you wish you had said instead. Stop focusing on what you think you did wrong or measuring yourself against an imaginary ideal of the “right” way to do things. There is no such thing. Every person, every situation every moment with this disease is different and can’t be defined by an all-inclusive set of never fail instructions. There’s a reason there’s no Martha Stewart of Memory Care. This disease creates a series of unpredictable moments where solutions that may be considered imperfect in other’s eyes are often the best answer for your loved one.

2) Not everything is going to work. A number of activities, in fact, might not. So many factors can impact whether an opportunity to engage your loved one was met with any interest on their part. The timing of the activity, their physical and emotional well-being in that moment (fatigue, thirst, hunger, or anxiety level can have a negative impact on them being in the mood to participate). It’s okay to have more instances when things didn’t go as planned than ones that do, plan on imperfection. Give yourself permission to try new things or modify any activity ideas that you read or hear about to best meet your loved ones needs and capitalize on their interests and abilities.

3) Get a jump start by doing tomorrow’s tasks tonight. At the end of a long day, the last thing on your mind is probably trying to fit in “just one more thing”. Throwing a load of laundry in the washer, loading the dinner dishes and running the dishwasher or even setting the table for breakfast may be worth the extra effort tonight to give you a little extra time tomorrow.

4) Look for ways to save time on chores. Try paper plates to decrease dish washing, prepare healthy crock pot meals and make more than you need, then portion out and freeze them into individual meals that can be thawed when needed. When making something (salads, sandwiches, soups, snacks) always try to make extra if it will keep. If you’re going to go to all the trouble of making it, why not make enough for you both to have get a couple of meals from your efforts instead of just one? When doing laundry, put clothing away in sets or in complete outfits. On one hanger have shirt, pants undergarments and socks draped over the shoulder so dressing can be a grab and go event without having to think about matching or searching for each item.

Eason House 5) Life is a series of these small victories, these shared experiences that connect you both despite the disease. Cherish the times when you laughed, played, shared in something that reminded you of a time before Alzheimer’s. Enjoy any experience where even for only a brief breath of time you were in touch with the life that was lived long before you knew what dementia was. Accumulating more and more moments that matter along the way, is more important now than ever before. Every one of these moments is a precious gift to be nurtured, protected and celebrated.

6) Reach out for help. The Alzheimer’s Association’s 24-hour helpline is a wonderful, anonymous resource that you can reach at: 1.800.272.3900. There are also a myriad of online support groups and Facebook communities such as USAgainstAlzheimer’s, Forget Me Not, and Memory People that offer forums for questions and situation based idea sharing based upon what’s happening at home.

7) Try to remember above all us, that though we may not be able to change the destination that this disease takes us, we can absolutely improve the journey along the way. Putting quality of life now above all else can help make sure that no matter how many days you have left with your loved one, or how many of those days will be good days, you’ll have peace of mind that you did everything you could to make the days you do have together really count. Let go of the little things and look at each day as a chance to connect, a chance to love each other while you still can.

8) Remember your role in making sure things stay joyful in your home despite the devastating impact of Alzheimer’s and dementia. You are the most significant activity “supply” or care “technique” in this whole process. YOU. Your patience, words of encouragement, soothing and supportive tone of voice and loving reassurances throughout whatever task or activity you choose to do will have a far greater impact on whether or not your loved one has a good day than any item you can ever purchase and can be more effective than a lot of medications out there. Your attitude and commitment to making sure that no matter what happens, you’ll make sure it retains an air of calm, and comfort is something that doesn’t cost any money, but in the end is priceless. I know that sometimes this is a lot easier said than done.

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What’s your strategy for dealing with grief and guilt? We’d love to hear from you, so please leave a comment and share your story.

Stay tuned for Caregiver Coping Strategies Part 3 of 3: Making More Time for Moments That Matter. In this third and final installment of The Dangerous Dance with Stress and Guilt series, Mara Botonis will provide tips for finding quality time to spend with your loved one – even in the midst of all the logistical and practical issues you’re dealing with on a daily basis.

Also in the coming weeks, I’ll be giving away a copy of Mara’s wonderful book, “When Caring Takes Courage”.