Tag Archives: family caregiver

Family drama played out as adults

Siblings Spring 2017My siblings and I are together for a week. It’s a great big mix of fun and confusion. It’s as if we’re back at the dining room table in our childhood home, resuming the roles we played as children. Unresolved family issues simmer just below the laughter, ready to take center stage when the joking subsides.

I have always felt like the black sheep with my siblings but during this trip, I’ve learned that we each, in our own way, feel like “the odd one out.”

It’s not easy to come together as adults and deal with emotions that accompany diseases, aging or family caregiving. For many of us, navigating the rough waters of our childhood was challenging enough. I’ve worked through a lot of my childhood trauma, but still find it difficult to hold on to this new-found strength when in the company of my family of origin.

Our families are the first hierarchical institution we experience, the place where we feel most connected, but sometimes also where we feel most limited. Think about dinner times—where you sat and how you interacted with your family. That scene is recreated when we come together as adults to deal with heavy-duty life issues, oftentimes without the benefit of training. We simply use the limited skills we gained as children and clumsily apply them to adult situations.

I have leaned on the SANE Method™ once again, feeling supported by asking a friend to lunch, feeling appreciated by making time for walks in the woods, letting go of guilt by reminding myself that I’m doing enough, and feeling energized through getting enough rest. We can’t always have easy times with our families of origin, but we can have sanity, and that is in your hands.

Lost in a crowd of familiar faces

My dear friend Sylvia, who suffered from Alzheimer’s disease, was very agitated when I visited her at the nursing home. She was sitting in her wheelchair, banging it against the nurse’s medication cart. As I approached her I heard the nurse address her like this, “Sylvia you’re missing a shoe.” That meant nothing to Sylvia.

Later on, my dad tried to tell my friend, “This is where you can set your water glass.” Sylvia looked blankly at him and held on to her glass.

loneliness in a crowd copyEven though my dad felt that he was clear in his explanation, at a certain stage of Alzheimer’s disease sufferers can no longer follow simple instructions. We also can’t expect them to take part in or to understand our conversations, especially in large groups.

Part of what I do through my speaking engagements is help people understand what it’s like to be with familiar faces, but still feel totally lost in everyday conversation.

The closest I have been to understanding how Alzheimer’s disease can impede communication was when I was on a semester abroad in Norway. I remember one such time where I was the one completely adrift in a crowd.

A friend invited me to a party where I met a number of his friends. My Norwegian language skills were good, but nowhere near good enough to keep up with the rapid-fire conversations that were happening all around me. I felt lost, confused and totally exhausted by the end of the evening.

To top it off, I took the wrong bus to get back to where I was staying. When I finally arrived at my apartment, I was in tears. My roommate greeted me with, “We’re only going to speak English and tomorrow I’m taking you to the American Lutheran Church.” That’s how she helped me regain my footing and feel connected again.

I offer three ways to help you stay connected with a loved one who has Alzheimer’s disease and struggles to communicate:

  • Connect with your eyes—stand or sit at the same level with your loved one and look them in the eyes. Look at them when you’re talking to others, even if they aren’t able to contribute. Let them know that you see them and that they are included.
  • Slow WAY down—speak clearly and in short phrases. Allow pauses in your sentences and space for them to respond. Their response may come out in “word salad,” but nod and acknowledge them; don’t correct them. If they have lost most of their ability to speak, refrain from asking them questions that require complex responses.
  • Use touch—if they can’t form sentences, include them in the conversation by holding their hand or sitting close to them.

If you’re able to shift how you interact with a loved one suffering with Alzheimer’s disease, you also take care of yourself. You stay SANE* in a challenging caregiving world.

*Supported, Appreciated, Not Guilty and Energized, explained in my new edition of The Unexpected Caregiver

A Valentine’s Day Reminder for all ages

I will never forget where I was and how I felt when my dad informed me that he had asked a woman out on a date. A date? My dad…but wait, he’s married to my mom. My mom had died in January of 2002 and it was the fall of 2003 when we were having this conversation. I knew it wasn’t too soon, but none-the-less it felt, well, weird. My dad was informing me that he had asked a woman out because we lived in a small town and he was sure I’d hear about it from one of the many local town criers if he didn’t tell me himself.

He also wanted me to meet her, which I did. Is this what it feels like when ones parents meet their child’s first date? I wasn’t sure what my role was, so I asked my dad just what he wanted from me. My approval? My advice? Then, after I breathed in and out several times, I realized that my dad simply wanted me to share this part of his life with him. Nothing more was required of me.

snow heart in mittensForget attaching the adjectives “cute and little” in front of “older couple.” The Silent Generation (those born between 1928 and 1945) is redefining intimate relationships. My dad’s generation is formally known as the people who “had to get married in order to have sex.” They are now forming new relationships, ranging from walking down the traditional marriage path to living in separate houses in different states. It doesn’t matter if they share a bed or not. What matters most is intimacy—closeness, companionship and love. Valentine’s Day serves as reminder that we all—no matter our age—need relationships that sustain us. Happy Heart Day all!

Beating depression by being both busy and engaged

When I have too much down time between projects, I can easily spend more time sleeping or surfing Netflix than is good for me. I get stuck. My depression blooms when I am not engaged in IMG_2826 - Version 2meaningful activities. I lean on my SANE Method*, knowing that the first word, Supported, is crucial to moving through a tough period. I have a circle of safe and positive friends on whom I can call.

I also understand the importance of being busy. I don’t usually subscribe to “busyness for busyness sake,” but at times there is value in simply getting out and doing something—anything. This won’t sustain me in the long run, but it works to move me through to meaningful activities.

Family caregivers can easily fall into variations of a similar trap: thinking that the appearance of their parents being busy trumps the actuality of being involved in an activity that’s engaging and meaningful to them, or thinking that — like some impromptu cruise directors on the Good Ship Getting Older — it’s somehow now up to the children to constantly be planning activities for mom and dad.

Don’t get me wrong. There’s plenty of value, mental and physical, in spending time with your parents to help them stay active and busy. But I believe it’s the “slow times” and the hours when your folks are on their own, pursuing their own interests in their own ways, that provide the greatest payoffs for their emotional and bodily health.

Just as is true with yourself, the goal is to help your parents get into things they will find enjoyable over the longer term — including activities they might do solo and under their own direction — because those are the ones they’ll do regularly and sustain by themselves.

If you notice your parents isolating themselves more and more, try opening a conversation about what brings meaning to their lives. And ask them how you can support them. Your support — whether is be simply listening to them or assisting them with ideas — can be one of the single most important things you do for your parents.

*Supported, Appreciated, Not guilty and Energized.

 

 

 

 

How long should I grieve?

OLYMPUS DIGITAL CAMERAI remember crying at the oddest times after my mom died. I burst into tears while sitting on the toilet once and another time when presenting in front of a group. Tears come and it’s okay.

Grief is a reaction to loss and is ongoing in many caregiving situations. The person may be alive, but we’re watching pieces of them disappear. Caregivers suffer from a double grief: grieving the end of a loved one’s life, but also grieving the small, constant changes that continually take away and diminish the person we once knew. There’s also another grief: the loss of our life as we once knew it and as we had planned it to be (we don’t have more than one life).

Generally, we don’t “get over” grief. There is no set time frame for grieving, but we do want to move through it rather than get stuck in it. For some, grieving has been such a constant companion during caregiving, that once our loved one dies, it is more of a relief than a continuation of sadness. There is no judgment about grief, but please recognize that this period of time — however long or short — is part of the process. Allow yourself time. Feel what you feel, share with others and seek support. Then give yourself permission to move beyond grief. The goal isn’t to forget. The goal is to survive the time of grief, find a way to hold onto the memories and cherish what you had.

Taken from the New & Expanded Edition of The Unexpected Caregiver®: How to keep Mom & Dad active, safe, independent and yourself S.A.N.E.

Feeling Appreciated…even during the holidays

If you ask some of my friends and family, they may tell you that I don’t like Christmas. That’s not true. What is true is that I’ve often felt let down at Christmas. Not because of the holiday itself, but, well, because it’s also my birthday. Celebrating my birthday always seems to be squeezed in between driving to the relatives and opening presents. Probably one of the most painful happy-birthday-christmas-bulbmemories I have is overhearing my grandma say to my sister, “Oh, I forgot Kari’s birthday. Grab a present from under the tree and we’ll put ‘Happy Birthday’ on it.”

When I started working on S.A.N.E.™ (Supported, Appreciated, Not Guilty and Energized) for family caregivers, I looked at aspects of my life outside of caregiving that would also benefit from my SANE Method™—Today I’m asking myself, “What can I appreciate about being born on Christmas Day?” Instead of expecting others to create a “happy day” for me, now I think of SANE™ and realize that feeling Appreciated is my responsibility.

How freeing it is to let go of expectations! Rather than planning my reaction to what doesn’t happen, I plan parts of the day and allow other parts to simply flow. Among other things, I appreciate that I’ve started a new tradition of birthday breakfast. French toast, bacon, coffee, and on the occasional year, a mimosa. It is that simple.

I came into this world at dinnertime on a cold Christmas Day and I took my time. Maybe that’s why it has taken me a while to learn how I can feel Appreciated on my own, from within. On this holiday season, I wish for you to find ways to Appreciate all that you do to create light in the dark winter. Know that feeling loved and Appreciated comes from within first, before it can be shared.

If You could stop the world, would you?

In the 1960s musical, “Stop the World—I Want to Get Off,” the lead character, Littlechap, breaks the fourth wall and addresses the audience whenever he wants a do-over. How many times would you say, “Stop the world”?

stoptheworld1I acted in this play while at St. Olaf College and often recall the poignancy of that phrase: “Stop the World.” Maybe if we were not racing around, we wouldn’t need do-overs. Maybe if we measured twice, we wouldn’t make so many mistakes cutting. I’m guilty of this: The busier I am, the more successful I feel. But this is a ruse, plain and simple. I love how Brené Brown puts it: “What we know matters, but who we are matters more. Being, rather than knowing, requires showing up and letting ourselves be seen.”

Being rather than doing also requires presence. Especially during the holidays, it’s too easy to do, do, do—go, go, go. It’s much more challenging to sit quietly and not do. It’s nearly impossible to understand that one’s self worth has little to do with how busy one is.

Possibly the best gift you can give your loved ones (and yourself) this holiday season is to stop: turn off your cell phone, shut down your computer and just hang out with your loved ones. It won’t be easy to do at first. If you’re like me, sitting still is not my norm. But the times I’ve let silence be my friend have rarely failed me. Don’t get me wrong, I love the big dinners and festivities of the holidays, but sometimes, every once in a while, let yourself off the hook and focus on the being rather than the doing.

OMG it’s the holidays—Five tips to stay S.A.N.E.

Shamed to eat seconds and thirds of the turkey dinner, loud conversations about uncomfortable topics, menfolk sleeping in the assorted Lazy Boy chairs while womenfolk did the dishes. That about sums up my childhood Thanksgiving tradition. We didn’t dare do anything different lest we offend someone. But times have changed.

Family caregivers tell me they feel stressed to keep up with intense holiday traditions “for Mom and Dad’s sake.” But if one of your parents has any dementia or physical limitations, putting on “the big family affair” no longer makes sense. All the hustle and bustle becomes overwhelming, especially for someone with dementia. Remember the acronym KISS—Keep it Simple Silly—and replace stress with letting go of what you think needs to happen.keep-calm-christmas-ball

Last Christmas our family scrapped the usual tradition of making all the food and ordered it from the local grocery store. We supplemented with some favorites, but overall we let go of the need to be in the kitchen all day. As you enter the holiday season, consider these ideas for creating more S.A.N.E.* holidays:

  • Have smaller gatherings—one of them with hot turkey and the other with cold turkey sandwiches while watching a movie
  • Book a table in your parent’s assisted living or commons room, order food and listen to Benny Goodman tunes
  • Schedule time outdoors and play in the snow or at the beach
  • Gather old photos and help your parents create books to give to younger family members, OR
  • Consider time as your gift: put away cell phones and electronic devices and be present with your loved ones

*S.A.N.E.—Supported, Appreciated, Not guilty, Energized™

Are you a care TAKER or care GIVER?

It’s a simple difference really—do you build your self-esteem around caring for another person? Do you get a small “high” from caring for another person? This is care TAKING. You may be late to work, snap at your family, or complain that you’re the only one who cares. Care Taking is all about your ego and it’s not healthy.

Care GIVING is about compassion, being centered in love and gratitude. This doesn’t mean that you set aside your own needs, however. Give care while staying S.A.N.E.—Supported, Appreciated, Not guilty and Energized™. How do you support yourself? Do you appreciate what you do for someone else? Are you able to drop the guilt? And where do you go to refuel yourself when the duties of caregiving seem overwhelming?

I’m happy to announce that the new and revised edition of my book, The Unexpected Caregiver. I’ve added six new chapters to help you, the family caregiver, look after your own needs while giving care to a loved one. I’ve even added a chapter on the oftentimes tricky subject of your parents dating. You can order a copy for yourself, family and friends. I’m thrilled that I can offer this resource to you. Happy reading and please, be good to yourself.

This month is for you

November is the month that the U.S. officially recognizes family caregivers. Why is this important? Simple. Family caregiving is a job, a role you take on many times without any pre-planning. It’s not an easy journey and many times it requires you to turn your life upside down in order to meet the needs of your loved one. I think it’s valuable that there is month dedicated to YOU—the Family Caregiver.

I’d like to share parts from this year’s Presidential Proclamation:

“Our Nation was founded on the fundamental ideal that we all do better when we look out for one another, and every day, millions of Americans from every walk of life balance their own needs with those of their loved ones as caregivers.”

take-care-of-self-first-copyThe theme of this month is “Take Care to Give Care.” You can’t give when your tank is empty. Well, you can…but it will be harder on both you and your loved one. Spend just a moment to think about how you can refill your cup.

“This month, and every month, let us lift up all those who work to tirelessly advance the health and wellness of those they love. Let us encourage those who choose to be caregivers and look toward a future where our politics and our policies reflect the selflessness and open-hearted empathy they show their loved ones every day.”

“Choosing” to be a family caregiver rarely feels like a choice. I encourage you to turn that around: Make a conscious decision about who you will be as a family caregiver. Rather than feeling like you “have to,” and that you’re “the only one,” find ways to support yourself. You don’t have to do this job alone, but you do have to ask for help. It rarely comes unbidden.

This month or any other time, I’m here for you.

3 quick tips to re-energize yourself

Last night I heard my friend coughing all night. I’m concerned that she’s not taking care of herself as she splits her time between caring for her dad and her children. With each visit, I see more of her time being eaten up by the needs of others. Acquaintances say, “Oh you’re so good to your mother.” Yes, she is—but I also want her to be good to herself.

Caregivers feel drained. It’s a tiring and energy-robbing role. In the midst of feeling exhausted you must sneak in ways to regain necessary energy. Try these three suggestions:

dscn8428

  1. Go for a quick walk around the block or into the woods. Breathe in the fresh air and imagine the oxygen filling up your brain.
  2. Crank up the music and dance. Both the physical movement and the energy of the music will give you energy. (My dad and I often break into random dance. As you can see in the picture, we enjoy!)
  3. Talk with someone about a fascinating book you’re reading. Get into it and share feelings and ideas and research even more about the topic.

You need energy to give care. You also need energy to enjoy the parts of your life that are not about being a caregiver.

How to beat the “Not-Enoughs”

“When will I see you again?” my Grandma Gladys would often ask as I was getting ready to leave. Instead of giving her a time and date I would answer with, “Well you know I’m awfully busy at college.” Part of that answer came out of frustration that my current visit didn’t seem to count. The other part was sheer ego. I wanted her to know that I was important and had a life. I rarely felt good after a visit that ended like that.

Was I doing enough? Could I have visited her more? I loved my grandma dearly, but had a lot of guilt about not doing “enough” for her. It’s hard to say what is enough and feelings of guilt only fuel your uncertainty.

guilt-1A simple way to beat the “Not Enoughs” is:

  1. Put yourself in a rational state of mind. (You may have to do math problems to move your brain from an emotional to a logical place. Try it. It works!)
  2. In that logical state, write down all that you do for your loved one. (Make no judgments as you write.)
  3. Stay in that unemotional place and look at your list.
  4. Ask yourself, “Could I do more? What would I do? How would it affect my life?”
  5. If it makes sense to do more, add in the time. If it doesn’t, look at your list again, but this time with a sense of gratitude for the time and energy you give.

Guilt will be a constant companion on our journeys as a caregiver, but you’re in control. Erase the guilt and embrace what you’re doing as enough.

OMG I’m a Caregiver: Three Tips to Feel Appreciated

I never thought I’d be called at 2 a.m. to help my grandpa use the commode. Who wants to see their grandfather in such a vulnerable position? But I did it, and fortunately my grandfather was good at expressing his gratitude.

This isn’t the case with all caregiving. You didn’t ask for this new role and as one caregiver shared with me, “I do everything for my mom and my siblings can’t seem to find the time to help.” Wherever you are in your caregiving journey, old sibling rivalries often return, especially when taking care of Mom or Dad.

The second letter of my S.A.N.E. acronym, Appreciated, involves understanding that your family is not going to change now that care of a parent is needed. Be realistic and look at how your family functions (or doesn’t function). Don’t expect them to change their deeply conditioned behaviors; rather, manage your own expectations. Use these three tips to feel more appreciated:

  1. Let go of feeling you need to do it all. Allow others to help.
  2. Let go of the “shoulds.” Appreciate your own health and take time for you.
  3. Give up the idea of being thanked by others. Thank yourself.

 

 

I See that you’re suffering; let me provide relief

“When all is said and done, killing my mother came easily. Dementia, as it descends, has a way of revealing the core of the person affected by it. My mother’s core was rotten like the brackish water at the bottom of the weeks-old vase of flowers. She had been beautiful when my father met her and still capable of love when I became their late-in-life child, but by the time she gazed up at me that day, none of this mattered.”

The first paragraph in Alice Sebold’s novel, The Almost Moon, hit me in the gut. A frustrated daughter relieves her mother’s suffering while also setting herself free from the pressures of caring for someone who no longer recognized her as her daughter.

But this is a novel. This is not real life. As soon as I finished the book, I sighed and silently asked the unthinkable, “When will we see a headline about a daughter ‘relieving’ her mother of suffering?”

And then this article appeared. Is that what this is about? When we see a mother-daughter murder-suicide in the news, alarm bells ring. I discussed this with Dak and these are our thoughts in his words:

 

It’s just one case, right? It’s not like this is happening all over the place. This is not an epidemic. It’s just a weird thing is what it is. It’s an isolated incident, that’s all.

And yet, there is a whole lot of mystery to this that opens out into many possible worlds. This story offers very little detail. The authors won’t speculate. This one will.

I can imagine reasons for this happening from many angles.

The mother had a dread disease and no one would listen to her except the daughter who decided to act to alleviate her mother’s pain and then couldn’t live with herself.

The tyrannical mother finally became weak enough for the abused daughter to overpower and kill. Then killed herself.

Sorrow at loss of being useful.
Sorrow for being a burden.
Without hope.
Interior demons hide in the dark and they look like competence to everyone else.
Despair. So many reasons for despair.
Why did she choose a gun?
A belief that there is a better afterlife.
The weight of living is too heavy.
Too much of a burden on the ones you love.
Too much of a burden on the country you love.
Loss of community to death, to convenience, to entertainment and long distance.

What are the solutions here? How do we feel when we read a story like this? I feel my mind reach out to try to comprehend what happened, but why? Do I think I might become a woman whose mother is still alive and have to face this situation myself? No. But I can imagine how it could have felt and I think it would have felt pretty bad. No matter what the story behind the people is, at least one of them was suffering and had no relief in life. We can moralize about her choice, but that doesn’t seem like a solution to me. I feel that it’s wrong to kill, but happy people have no reason to kill. A satisfied society is a safe society.

So these two…hey one of them lived to be 93. That’s some persisting. I don’t think people live to be 93 without figuring a few things out and my feeling is that she had a good way of coping with stress, one that worked. Her daughter made it to 60 and that’s saying a lot as well. (I know we’re not supposed to be impressed with how long we live now compared to the entirety of our previous existence, but I’ve been watching “Cosmos.”)

She was suffering and we were in no position to offer relief. I think the fear is that one day we will be suffering in such a way that we need help for relief and it doesn’t come, or it’s slow to come. What kind of help?

We seem divided from our heritage. We have social media instead of being social, and I think many of us are fooled into thinking that the two are equivalent. There will always be suffering, but what if we were so kind to each other and considered ourselves together as a body rather than individual and separated pieces that we all shared the suffering so it ceased being so awful to any one of us?

I think it’s easy to forget that there are solutions to our problems and they are going to be found whenever two or more of us gather together. Remember who told us to do that? Again here it is easy to get hooked into the story, but the story is alive in us. We are telling the story of ourselves right now. I know I’m not alone in preferring kindness to suffering.

Dak Gustal is a freelance writer and poet living in Randoph, VT. You may contact him at st.augustus@gmail.com

Yes. The Holidays™

I’ve heard from many of you in response to my last blog. My heart goes out to all of us who find this time of year less jolly and more complicated. My wish is that we each find our own version of Santa belly laughs. (The coffee shop in which I find myself just had TWO Santas come in. That was confusing. Not so much for the babies, but for me. How can there be two?)

I give you Dak and his creative version of The Holidays…now a brand.

By Dak Gustal

Part 1. In which I set out this year toward Christmas instead of away from it.

For ten months of the year, The Holidays™ are ridiculously easy to survive.

Just outside the Denny’s parking lot in Big Eel, two normal people enjoy a conversation about Christmas from the safety of September:

old coupleEdith; Christmas? What’s the whoop?

Corwin: I know, right? What’s the big whoop?

Edith rattles her free weekly newspaper already blossoming in holiday style

Edith: How would we fall for fake Christmas anyway?

Corwin: I don’t know, right?

Edith: ‘S so stupid!

Corwin: Ridiculous!

Corwin stands, pulls himself to his full height, clenches into a knot then releases a stream of curses across the park at an offending red squirrel. He then resumes sitting in the exact spot the same way, as if nothing happened. Edith does not seem to notice.

Edith: You’re not gonna fall for it this year?

Corwin: I don’t know. No, right?

Edith: I’m just going to enjoy the season for what it is.

Corwin: Yeah! Just enjoy the season for what it is.

Pause.

Edith: It’s about love and peace and joy to the world and stuff. It’s no big whoop!
Corwin: I know, right? What’s the big whoop?

Part 2. In which I begin to realize the flaw contained in Part 1.

It’s December. Krampus, in the form of Our Hero’s Life Partner, explains exactly what the Big Whoop is all about:

Krampus : What’s the big whoop! I’ll tell you what the big whoop is! I got Santa infesting my brain and you don’t have any Santa in you at all and I keep getting things for Billy but Sally just has the one thing even though it’s a big ticket thing and who knows what Kevin thinks about anything, he’s so full of…

[We interrupt this Important Diatribe of Complaints to remind you that when you need to get into The Holidays™ Spirit nothing says “I love you!” like The Holidays™ Spirit of The Holidays™ 64 Calorie Tribute to The Holidays™ Holiday Nog. Get yours today!]

…when she pulled the whole tree down on top of her which is why you always have to put the biggest…are you even listening?

Hero: I wasn’t listening, but now that I know a very good reason to not ask about the whoop anymore, I was wondering if you were going to get to the part where we all come together as one big happy family and the snow falls gently outside but inside everyone is warm and happy to be together and everyone got what they really wanted which was to be seen and heard and enjoyed and cherished and to love their lives and the life you live with the people we love.

Little Girl: But the people we love are often terrible people when they’re around people that love them!

Her Brother: And as it turns out, you’re the worst one!

Uncle in the back: It’s a cultural thing!

Woman in red hat: I blame the ads!

All in Chorus: Yes! Ads are making The Holidays™ conform to their will!

Dad, pounding the table solidly, once: That’s enough! Out All Of You.

Part 3. Total Defeat. Keep Eating?

In the silent aftermath, over the soft grunting and chewing and scraping of silverware on bone china, you can hear music low in the background. Familiar, intricate music designed to hone time to the singular emotion we are all expected to share and overcome; the music always there in the background of The Holidays™, hearkening heraldic angels to sing over and over again. And once more.

The Holidays™ brought to you by It’s Just What I Always Wanted!™ For Men™
Available now everywhere!

Dak Gustal is a freelance writer and poet living in Randoph, VT. You may contact him at st.augustus@gmail.com

 

Money, Age, and Big Foot

Recently I posted a question on Facebook asking for top issues when it comes to caring for Mom and Dad. One response was: “I hate trying to make sense of their finances & realizing, by looking through checkbook registers for instance, that dementia was grabbing ahold of my mom much earlier than I realized.”

There are different types of loss. When dementia takes hold or death comes too quickly, financial issues tend to scream for your attention. Right in the middle of dealing with emotions, you need to tackle financial concerns.

I interviewed Aaron Britz of Legacy Wealth Management recently. He specializes in helping women gain financial control during a life transition, such as loss of a loved one. The interview is both upbeat and informational and could be just the ticket for moving you from fear of finances to getting a grip on this often times emotional issue.

And for a completely upbeat and upside-down look at financial issues, I call on Dak Gustal. Be wise…bite off these financial issues and if you want support, contact me. Now, here’s Dak: Read more »

Three Taboo Subjects to Raise with your Aging Parents

Finances, Mental Health and Sex: Three topics of conversation avoided in the calm times and poorly handled under crisis—especially when a conversation needs to take place between an aging parent and their adult child. Read more »

Together We Can

88-year-old Betty finished the 3 1/2 hour rainy-day hike. It wasn’t something she did alone; the group walked along side her. With a walking stick in one hand, her grandson held the other. When the creek was too wide and rocky, our guide lifted Betty safely to the other side.

IMG_2927Even though some in our hiking group may have wanted to climb a peak or move more quickly, our personal desires easily gave way to the group’s goal of completing the hike as a whole. As individuals we may be preoccupied with our individual agendas, but allowing others to interrupt our preoccupations can be a sweet gift. We tune into someone else and we wake up to the present moment.

This is what it can be like to be a family caregiver. If we’re able to set aside our personal wants and tune into another person, it is a great gift to both care receiver and ourselves. When I completed Robert V. Taylor’s 21-Day Reboot, I found myself tuning both inward and also outward per his daily suggestions. When you listen to our radio interview, you will see just how helpful his 21-Day Reboot can be for family caregivers. Instead of being weighed down by daily tasks, embrace Robert’s Day 5 suggestion: “Delight affects how you participate in your own life and the world. Chose to allow yourself to be delighted by something or someone today. Tell another person about your delight.” Read more »

I don’t need training. I know my Mom

What do you do when your mom has Alzheimer’s disease, your father denies it, and your siblings are of no help? Caring for a parent with Alzheimer’s disease has a steep learning curve. Yet may family caregivers feel they “should” be able to handle it—No training needed. You must ask for help. Read what you can get your hands on. Attend support groups. Instead of arguing with someone who has Alzheimer’s disease, use my favorite phrase: “You may be right.” And walk away.

I recently interviewed Pam Brammann, who provides training for family caregivers. She shared with me brain brain images (PET scans). First you see a normal, active brain compared to an Alzheimer’s brain. You see very little activity in the diseased brain. The second set compares a normal infant’s brain to that of someone with late stage Alzheimer’s disease. It becomes clear just why you can’t reason with someone who has Alzheimer’s disease—their brain is working at the level of a 2-year-old.

Normal Brain vs Alzheimer's Brain Late Alzheimer's Brain vs Normal Infant's Brain

As Pam explained in our radio interview, “If a two-year-old runs across the street, you don’t sit that child down and elaborate the dangers of running across a street; the child won’t get it. Same goes for someone with Alzheimer’s disease.” Reasoning with someone who has Alzheimer’s disease or other dementias doesn’t make sense.

Even if you think you know your Mom or Dad, you may not understand how the disease has changed their brain. Getting a little training to better understand the disease and just how you can handle the symptoms (or behaviors) will do wonders to keep you sane.

Wait until you retire to travel

Good thought, but doesn’t always work. How many times have you heard stories about your neighbor who put off travel until retirement, only to be met by a stroke and have to give up his dreams to travel.

My maternal grandfather waited. And then his Huntington’s disease spoiled his dreams of a retirement full of adventure.

In The Unexpected Caregiver, I provide creative suggestions of how to physically travel and also mentally travel from the comfort of your own home. Add to my suggestions the ideas of Thomas P. Stern of Assisted Vacation. Whether it’s Alzheimer’s disease or physical issues, the Assisted Vacation team will build a travel vacation that supports both caregivers and care receivers. Read more »

Songs in my head

I think in song lyrics. I open my laptop and the words to a Bahamian lullaby pop out of my mouth: “All my files Lord, so-oon be open.” This just happens with me. And yet if you sit beside me in church when I have the words of a hymn in front of me, I’ll sing different words. My good friend Emily chuckles and says, “How can you get the notes so right and the words so wrong?”

Music has always been a part of my life. It’s something I can share during a presentation or at the bedside of a Hospice patient. When I worked in a dementia care community, I used song to greet the residents. Music can be used to shift moods, to acknowledge sadness, to release anger, to embrace happiness. As a family caregiver, you can use music to connect with your parents. Instead of listening to “their” music or “your music,” take turns. My dad and I dance to Madonna and Frankie Valli. Instead of telling your kids or grandkids to “turn off that noise,” engage with them. What is it about the beat, the words, the band that they enjoy?

IMG_2513More than just enjoyment, music can also be used to help someone who has suffered a stroke to relearn how to speak, a person with Parkinson’s disease to improve their posture and reduce pain, or a patient in Hospice to leave a song legacy. I welcomed back Melissa Hirokawa, M.M. MT-BC, Neurologic Music Therapy Fellow, on “The Unexpected Caregiver Radio Show,” where we focused on using music in stroke therapy. Melissa clearly loves her job and shares delightful stories of how her work has improved the lives of those elders to whom she gives care. Our previous interview focused on how music therapy supports the family caregiver. Both interviews are upbeat and insightful.

Whether you engage a music therapist, use songs to connect with your loved one, or like me, think in songs, let music support your on your caregiving journey.

“I See Dead People”

It’s totally normal for someone who is dying to see “others” (many times relatives). They may even talk to them. You may think they’re going crazy, but it’s very common. Sometimes a dying person will say something such as, “Aunt Mildred was here and asked me to go with her….” These experiences happen, as Christine Cowgill told family caregivers on The Unexpected Caregiver Radio Show.

I realize that you may not want to discuss death, but when a loved one is dying, it can be the central theme of one’s days. Read more »

Reconnecting with Mom and Dad

How do you reconnect with Mom and Dad? Even if one of them has a disease that causes dementia? It is often a challenge, especially when we’re trying to do something “special.” Family issues get in the way and we get frustrated. Your parents may not move as quickly as you do and you get irritated. When they don’t hear you (and you don’t understand them), tensions rise.

But I’m talking about reconnecting with them and not doing anything special. I recently interviewed Dr. Victoria Sweet, author of God’s Hotel. Dr. Sweet worked for over 20 years at San Francisco’s old Laguna Honda Hospital, a giant chronic care facility for the city’s destitute and ill. At one point in the interview, she said, “There’s nothing like presence and giving someone space.” Another reminder of the importance of being with someone vs. doing for someone. Dr. Sweet used to sit on the bedsides of her patients and listen. Or at times, just sit. It is that simple. But you must let go of the to-do list or the notion of doing something special.

Showing up is half the battle, but when you do, allowing someone space to express themselves—to cry or to laugh—is priceless.

Of course there are other ways to actively reconnect with your parents (and that is exactly what I talk about in The Unexpected Caregiver). Bring in a picture, a children’s story, a memento, and hook into your parent’s memories: “Tell me about this handkerchief, Mom” or “What is special about this book, Dad?”  Be gentle if there is memory loss. Reconnecting is not about the correct answer, but is more about sharing stories.

And don’t forget to hook into your parents by just sitting beside them, connecting through silence. Silence is, after all, golden.

It’s not you; it’s your hormones

Thank you Dr. Sara Gottfried for reminding us to stop blaming ourselves and take a look at our biology. If our hormones are out of balance, we’re struggling against our selves. I gained invaluable insights into hormones during my radio interview with Dr. Sara: Caregiving and Hormones.

As women and as caregivers, we tend to give and give and give. Dr. Sara sees thousands of women in her medical practice. The majority of her patients fall into the classic definition Read more »

Who wants to talk about incontinence products and wipes?

Lynn Wilson (listen to our interview here) along with her husband Tom do! They own The CareGiver Partnership and answer phone calls every day from family caregivers who need incontinence and other care products.

I can’t imagine ever having to help my dad with incontinence or bathing issues. I’m sure many of you shudder just thinking about it. It’s not uncommon: your mom is in the hospital and at discharge time, you are told that she will need help with bathing and toileting. Read more »