Surviving Alzheimer Together – The #1 Cure for Sibling Joy & Peace

 

Siblings are the easiest people in the world to resent.

“You always were Mom’s favorite.”

“Dad’s never bought ME a car.”

“You’ve been living off Mom and Dad for years.”

Sadly, the older we get, the deeper resentment can grow.

 

A parent’s Alzheimer’s diagnosis adds strain to every sibling relationship.

“I’m helping out at Mom & Dad’s every day.”

“I’ve funded their mortgage for years.”

“I manage all their bills and checkbooks.”

My life experience has taught me the value of using Alzheimer’s as the opportunity to improve cooperation and communication among you and your siblings.  You see, Alzheimer’s is a make-or-break family experience. Get through Alzheimer’s with a ‘me vs. you guys’ mindset and the divisive wedge of sibling resentment is pounded deeper. (Think decades of likely future estrangement.) Get through Alzheimer’s by prioritizing working together and you will lighten parents’ load plus you’ll enjoy at least 7 kinds of support and peace from your siblings. Take these for example:

1. A sibling is your first responder.

Who does the care partner call when Mom refuses to dress? Or when she burns a pot on the stove or needs a ride to the doctor?  Usually a sibling or family member, often the one who lives nearest, serves as the family’s first responder.  It’s common for siblings and their partners to assume they are aware of all the times the local family member is dispatched. In truth they only hear about the five alarm fires. Like fire-fighters who hand out carbon monoxide and smoke detectors, first-responder siblings triage hundreds of safety situations that go unmentioned. They assess situations like: who is best to drive to today’s doctor appointment? Who actually ate lunch? And when were the sheets were last changed? Show appreciation and respect to your first responder. The recognition you give them will strengthen your relationship and provide the extra dose of joy they need to bear up under first-responder stress.

To understand how siblings contribute to caregiving while living at a distance, read: Are You a Caregiver? Why it matters for you to know .

2. A sibling is an eyewitness to your past.

“Memory…is the diary we all carry about with us.” Oscar Wilde

What would it be like to see someone change right before your very eyes? With Alzheimer’s, a person can look the same on the outside while inside they are transforming into a completely different person . A coffee-addicts quits cold turkey; an introvert becomes an extrovert; a minister begins to swear freely; a peaceful person becomes violent.

There will be times when you will want to remember your Mom the way she was when she raised you. Surviving Alzheimer’s together with your siblings connects you with others who are experts on your Mom. Even memories of the most imperfect mother, and the way she was, will bring you joy and peace when shared with your siblings.

3. A sibling is a comfort to you in your grief.

“… [Mom’s] personality has changed ever so much, and it is a process of change for me as a daughter. And unlike other illnesses, that change means loss - a lot of the time - and loss means grief. So, if I’m looking at it in the negative way, it’s a lot of grief over and over and over again, which is the hard part of this.” Sarah Mitchell, daughter of Wendy Mitchell, NY Times Best Selling Author of “Someone I Used to Know” on BBC Sounds podcast, April 2, 2019  

Alzheimer’s is a subtraction disease. It takes small parts of our loved-one away bit by bit. As Mom’s abilities, hobbies and preferences diminish Mom eventually gets better at accepting the change. We on the other hand seem to get worse. Maybe it’s because we are the ones who need to adapt to her losses. We long for the good old days when Mom weeded the flower garden with Old-Testament vengeance and ruled the house with a wooden spoon. We miss our Mom. We grieve the loss of the house-blend that made Mom so uniquely Mom. Because we are human, we grieve. Grief over Mom’s losses is normal. Grief will continue for as long as Mom lives with Alzheimer’s (and likely beyond). Sharing your grief with siblings can offer peace and solace for all of you.

4. A sibling can give you a firm reality check.

“Doctor, my eyes/ Tell me what you see. / I hear their cries. Just say if it’s too late for me.” – Jackson Browne

During Alzheimer’s your loved one is guaranteed to say or do things you find unbelievable. Next thing you know their care-partner will join in doing it too. What’s on earth is going on?

Changes in the Alzheimer’s brain are changing their reality. The good news is that often their ‘unusual’ behavior can be a sign that they are appropriately adapting to their new realities.

Now take a look at yourself in the mirror. How are you adapting to these changes? Somehow by standing still, you’re now the one out of step.

A great way to find peace in these moments is to talk them over with a sibling. In this case your sibling (even one on the opposite end of the political spectrum) may be the only one who can give you the reality check you really need. They can confirm that yes, in fact, this is a new behavior (rather than something you missed seeing all these years).  And reassure you that yes you can (and must) pay closer attention to your parents than you have been.

5. A sibling can help you know when to stop fixing and start accepting.

“If there's a single lesson that life teaches us, it's that wishing doesn't make it so.” ― Lev Grossman.

After your reality check, a natural response is to try to fix everything. To de-clutter the house. To organize the medications, to move Mom and Dad somewhere safer, and on, and on. These can be sound impulses, especially when put in place in concert with your siblings.

There will come a day when all the busyness and change become the problem. Your care partner is too frazzled to put your plans into action. Your loved one is less able than you realize. Alzheimer’s is at least 3 steps ahead of you.

This is when a sibling can give you the wake up call you need. A sibling can help you realize that the only positive way forward is to work on your own acceptance. To accept that your fixes are agitating and frightening for your loved one. That your fixes are exhausting for your carer. This is the time when you need to accept that entering your loved ones’ new world is the perfect gift to give them.

6. A sibling relationship creates opportunities to be merciful.

“The quality of mercy is not strain’d,
It droppeth as the gentle rain from heaven
Upon the place beneath. It is twice blest:
It blesseth him that gives and him that takes.”

The Merchant of Venice by William Shakespeare, Act 4, Scene 1 

When your sibling deserves anger, punishment, or retribution and you choose not to give them what they deserve, you are exercising mercy.  Mercy is a gift to you both. Mercy is a gift you will feel great giving, because it will free you from your resentment. And it’s a gift that feels great to receive because it is an undeserved surprise and also reminds us to return the gift of mercy.

7. A sibling is a travel companion on the long Alzheimer’s road.

“When you go out into the world, watch out for traffic, hold hands, and stick together.”
- Robert Fulghum

True, even when your sister has cooties.

CONCLUSION

Siblings can be compassionate support resources for parents  – (and for each other) during Alzheimer’s.

Sustaining each other brings you, your siblings and your care partner safely over the Alzheimer’s finish line. The healthier, stronger connections gained are a gift that helps us better appreciate the imperfect people we love.

RECOMMENDATION

Every effort you make to get you and your siblings on the same page during a loved one’s Alzheimer’s is valuable. Many siblings navigate the relationship and well-being changes related to Alzheimer’s on their own. Other siblings find it helpful to have a neutral third-party facilitate discussion and learning. They find a third-party gets them on the same page at a faster rate with stronger, lasting results.

The Perfect Thing now offers a solution for these siblings. Siblings Surviving Alzheimer’s brings siblings together to learn about Alzheimer’s and its impact on families. Sessions provide answers to your hows and whys, include facilitated discussions to strengthen sibling respect, collaboration and connection. This is your opportunity to work directly with Barbara Ivey, an expert who has been in your shoes.

Sessions are available on evenings and weekends. Online meetings make it possible for siblings who live in different towns or time zones to participate easily. Perfect for the closest of families or families who are physically or emotionally distant. For more details, and to book your first appointment, see Siblings Surviving Alzheimer’s.

Finding your best during Caregiving

I found Denise Brown and her Caregiving.com community in the fall of 2017.  It was more than three years since my Mom had passed from Alzheimer’s. Sometimes I still needed reassurance that the ways my life had changed were normal. I had read a bit about the National Caregiving Conference and decided to tune in to the Livestream to see what value it might have for us Alzheimer’s Kids. 

The presenters and panelists I saw were all positive survivors. They made me feel accepted. They made me feel normal. I realized I had found my tribe.

This year I’m thrilled to be a presenter myself at that same event.

Recently, NCC18 host Denise Brown led a Virtual Caregiving Summit to give Caregivers a taste of what they can expect at the conference. Denise invited Stephanie Antoine, Karen Laing and me for a late-afternoon virtual cup-of-tea and a chat about finding our best during Caregiving.  Here it is for you to enjoy.

If this was helpful, I invite you to watch the other 2018 Virtual Caregiving Conference videos. All of the interviews are with real Caregivers like you.  Their varied perspectives are likely to resonate with you, and may even spark some fresh ways of thinking.  Watch all the 2018 Virtual Caregiving Conference videos here. 

Mark your calendar for November 9-10, 2018. The Third Annual National Caregiving Conference (NCC18) will be held on those days at the Chicago Marriott O’Hare in Chicago Illinois.  Family caregivers and former family caregivers will share their experiences, insights and solutions. The great news is that the conference is available to both those who can travel to Chicago and those who benefit from attending via Livestream.  The preliminary agenda for the Third Annual National Caregiving Conference can be found here.

 I’ll be presenting Curiosity and Learning: Evidence you are doing a good job caregiving.  Often, Caregiving is a life-long vocation. I’ll be encouraging healthy Caregivers to measure success by what they learn.  I’ll introduce proven Lean Process Improvement principles and tools to make this a simple and rewarding practice. Join me on the COPING track on Saturday, November 10, 2018

I encourage you to check out Caregiving.com. I love the fresh perspectives of those caring for Loved Ones in varying conditions; and the reminder that Caregiver needs are the same even when our Loved One’s diagnosis is different. Caregiving.com was founded by Denise Brown in 1996 to help and support family caregivers.  Caregiving.com is a community of supportive individuals caring for a family member or friend. This community cares for parents, spouses, siblings, grandparents and anyone we consider family. Caregiving.com cares for you before, during and after caregiving.  http://www.caregiving.com

Your Friend on the Journey,

Barbara

 

Alzheimer’s and your parents’ home at sunset

ALZHEIMER’S, YOUR PARENTS AND THEIR EVENINGS


“Hon, where are you going?” Dad asks Mom. 

As the afternoon melts into evening, Mom is on her feet.  Minutes ago, she had settled into her chair after a trip to her bedroom to change into a warmer sweatshirt.  Now she’s back on her feet again, trying to steady herself.  She turns toward the sliding door that leads into the dining room.

“Hon?” Dad tries again.

Dismissively, Mom brushes away Dad’s question with her right hand and an unmistakable ‘stay-out-of it’ expression on her face.  She begins her walk.

Ten minutes later, Mom returns to the sunroom, dressed in her light blue track suit.

“You look pretty, Mom,” I tell her.  She walks to her chair, sits down, and picks up her crocheting.

“Guess I’ll start dinner,” Dad says, rising and moving toward the kitchen.  “You stay with your Mom.”

On cue, Mom stands, steadies herself, and turns again toward the sliding door that leads into the dining room. 

Since I’m in charge now, I decide to follow Mom. I keep my distance.  I track her to the bedroom. Peeking in, I see her lay out a pink sweat suit.  I maintain my covert status by ducking back into the hall.  Finally, I hear Mom’s steps moving toward me, so I double-time it back to the sun room.  Mom enters, dressed in her favorite warn pink sweat suit.

“You look pretty, Mom,” I say.  Mom walks to her chair, sits down, and picks up her crocheting.

Exasperated, Mom asks to anyone who will listen: “Is it time for bed yet?”

Minutes later, Mom stands, steadies herself, and turns toward the sliding door that leads into the dining room. 

Has your Alzheimer’s Caregiver mentioned that your Alzheimer’s Loved One gets more restless, confused and unpredictably moody around dinnertime? If so, your Loved One is likely experiencing “Sundowning.”

Imagine the Alzheimer’s Caregiver in your life trying to manage these behaviors while preparing a meal at the same time. Every night.

How can you help? When proximity permits, bring them evening meals or invite them over to share a meal.  Our geographic distance called for another approach.  For years I ordered frozen, pre-made healthy meals and gave them to my parents for Christmas, Mother’s Day and Father’s Day. And I made sure to never call during dinnertime.

How might you support your Caregiver through the challenging phenomenon of Sundowning?

What a stressed caregiver sounds like

ALZHEIMER’S, YOUR PARENTS AND THEIR STRESS

“Give me a break,” Dad snaps.  “Do you think we keep this place a pigsty?” It is now 9pm and Mom has gone to bed. Dad’s been up since 4am.  He’s toast.

“Of course not,” I respond. “I seriously just want to know what you think about Diane coming up to put all your important papers in a fireproof box.”

“And just why would we need Diane to get our papers together? Do you think we are going to lose them or something?” Dad barks back.

Clearly, Diane’s well-intentioned offer has insulted Dad.  I take a deep breath, and then try a new approach.

“Last month, Diane moved her important papers to a fireproof box.  So she thought it would be nice to do the same thing for your papers.”

Dad pauses before replying. “I’ll have to ask your mother.  Anyway, why would she need to come all the way here do such a simple thing? I manage this place on my own just fine, you know.”

“The box is a gift Dad. A present,” I explain.  “And the visit is just because she loves you. It’s just that simple.  We love you, Dad.”

In these moments, I know that Alzheimer’s caregiving leaves Dad sleep-deprived, needing more patience, and yearning for even the smallest hint that the disease might be slowing down.  Still, it surprises me every time he comes back at me.  After all, I’m in touch. I’m trying. I care.

In time, I realize that, as Dad grows his Caregiver skills on this Alzheimer’s journey, I have an opportunity to grow my compassion and forgiveness skills. Plus patience, which has been on my growth list for years. 

We both have our work cut out for us.

Do you find your parent’s Alzheimer’s journey giving you opportunities to grow in surprising ways?  If so, how are you responding to these growth opportunities?

 

When your Loved One needs more care than they get at home

ALZHEIMER’S, YOUR PARENTS AND THEIR DECISIONS


“How did your annual physical go, Dad?”

“Dr. T. says I lost 50 pounds.”

I take a deep breath.  “Since last year?” I ask.

“Yes.”

Fifty pounds?  Dad was already skinny.  Did he even have that much weight to spare?  That’s why his belt was cinched so tight last time I saw him.

Refocusing on the conversation, I dig deeper.  “And what did Dr. T. say about that?

“He said that I need to make a change,” Dad explains.  “He says that it’s my responsibility to care for Mom, and that I can only do that if I take care of myself first.”

 I take a deep breath in.  “So what are you thinking?”

 “It’s time to look for a Memory Care Facility for your Mom.”

I exhale. 

After all these years. After all my other-than-perfect efforts to support my Dad – I have finally learned a few things.  I learned that ultimately, Dad will make all the decisions about Mom’s care himself.  I learned that there are better uses of my energy than trying to speed Dad toward a decision before he was ready.  My opportunity was to grow my patience and my compassion, as I learned to work on Dad’s timeline. 

Has your Alzheimer’s Caregiver finally agreed to accept help with caring for your Alzheimer’s Loved One?   If not, what role can you play in encouraging this, without forcing their hand?  By letting the Alzheimer’s Caregiver arrive to this conclusion on their own time, you may find that you will have grown in your own unique ways, too.