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.

Yes – Professional Women and Men Need Alzheimer’s Support Groups!

ALZHEIMER’S, YOU AND YOUR SUPPORT


Recently, I had the honor of meeting two fine people who each had been an Alzheimer’s Caregiver to a Loved One. The woman had cared for her husband through Alzheimer’s; the man cared for his wife through Frontotemporal Dementia (FTD). Their stories, their bravery, and their strength reminded me of the sturdy threads of love that link together all Caregiving efforts.

These lovely Caregivers gave me a special gift that day: a special moment of being understood.  A moment where I could share my experiences as an adult child of someone with Alzheimer’s (I call myself an ‘Alzheimer’s Kid’).  A moment when each one of us could nod in agreement that – yes – we had indeed all lived through many similar experiences.

It left me wondering…”Is this what it feels like to be part of a support group?”

You see, somehow, I stumbled through my Mom’s entire Alzheimer’s journey without ever knowing that all family members benefit from participating in an Alzheimer’s Support Group. 

So today, I’m extending the invitation to you.  If you are a Caregiver, or a Caregiver-to-the-Caregiver – call your local chapter of the Alzheimer’s Association (or your local Hospice or your local Assisted Living Facility) and ask for the time and location of an Alzheimer’s Support Group near you. Support Group acceptance helps you be more accepting with your Alzheimer’s Loved One.  Is there a better gift can you give your Loved One than that?

As you look forward to your first meeting, re-read the stories below, and look forward to being part of a community of people who ‘get’ where you are and what you are living through.

Alzheimer’s Kids Can Join Support Groups Too

Support Dad with his support group
 

~Peace,

Barbara

 

Handle your Caregiver with Care

ALZHEIMER’S, YOUR PARENTS AND THEIR STRESS


We’ve all been there. That moment you strike up a conversation, and the other person seems to explode in anger all over you. Maybe it’s their boss, or their spouse, or the guy that just cut them off in traffic. Whatever fired them up is history.  The present is that you showed up in time for the explosion.  Usually, once it’s over, there’s a moment between the two of you.  A shrug acknowledging the mutual understanding that you were the undeserving recipient of emotions triggered by someone or something else.

During my Mom’s Alzheimer’s, I stumbled into this situation again and again.  As my Mom’s Caregiver, Dad wisely refrained from unloading his frustration, his worry, his sadness or his stress onto Mom or onto his friends.  So the first person to call (often me) to innocently check in – perhaps to ask if he had found the time to visit the Adult Day Program – would be rewarded with the explosion. When I hung up I’d be numb. And also full of questions.  What the heck just happened?  What did I do to deserve that?  What is so terrible about visiting the Adult Day Program that it would make Dad respond like this?

In hindsight I see these calls were versions of the old familiar experience. Except, with one difference.  In the Alzheimer’s setting, the satisfactory moment of mutual understanding has yet to ever come.

This week I have been poring over the results of a very recent survey conducted by the Alzheimer’s Association. Survey results are as mouth-watering as dark chocolate to a lifelong researcher like me.  Hungrily, I dug into this study, conducted on-line this April 2017. Among the respondents were 252 people who had previously given care to someone with Alzheimer’s and 250 people currently giving care to someone with Alzheimer’s.

In the survey respondents were asked to put into words their feelings about caregiving. The mixed bag of emotions they identified has given me new insight into the emotional explosions I used to get from Dad on our calls. 

Current and former Caregivers reported a complex blend of emotions.  On the one hand, they report that caregiving made them feel helpful, productive, strong, supported, confident.  On the other, they report that caregiving made them feel worried, sad, stressed / overwhelmed.  43% report they frequently feel guilty.

 Caregiving brings a range of emotions.  Always handle your Caregiver with extra care.
Caregiving brings a range of emotions.  Always handle your Caregiver with extra care.

So now, let’s revisit my phone call to Dad, where I ask if he has found an opportunity to visit the Adult Day Program, and try to imagine what emotions my questions triggered in him.

Maybe the thought of this visit made Dad feel sad.  Maybe he had convinced himself that Mom would always be too sharp to fit in with the others at the Adult Day program. Maybe Dad was feeling under-appreciated for all the things he has done to care for Mom already this week.. Maybe Dad felt overwhelmed by the list of household chores waiting for him today.

Stir together the emotions of sadness, under-appreciation and overwhelm, and you get a powder keg. And right then, on cue, the phone rings…and it is me.

One small, life-changing thing you can do, is to hold a picture in your mind of your Caregiver beside a “Handle with Care” sign. This way you always remember the emotions brewing in the Caregiver on the other end of the phone, and treat your Caregiver with care.

Peace,

Barbara

 

Review results of the “Alzheimer’s & Brain Awareness Month 2017, Alzheimer’s Association Survey” here.

Support Dad with his support group

ALZHEIMER’S, YOUR PARENTS AND THEIR HEALTH


“This retired Pastor in my group…” Dad begins, with tears in his eyes. “This Pastor says that over his career, he advised hundreds of people how to handle loved ones with memory loss.  Now he’s caring for his wife who has Alzheimer’s.  And he says that now, for the first time, now that it is his wife, he really sees it.  He really sees what Alzheimer’s asks from a Caregiver.”

Six months before, Dad still was yet to be a “Support Group” kind of person.  But today, stories from his fellow Caregivers are the fuel that keep him going.

I find that I am so grateful Dad has connected with others – people whom he respects and who are walking the Alzheimer’s Caregiver journey alongside him.

I smile with my realization:  try as I might, there is only so much that I can be and do for my Dad.

Does your Alzheimer’s Caregiver have someone who truly understands their daily life?  Encourage them to ask their friends if they know of an Alzheimer’s Support Group nearby.  Make some inquiries into someone who can stay with your Alzheimer’s Loved One during the meeting so that your Caregiver can attend focused and carefree. Consider if there is a way that you can help them attend even just once.  After all, one meeting may be enough to convince your Alzheimer’s Caregiver to attend regularly. This could be a game changer for everyone involved.