When Your Parent Won’t Ask for Help

Occasionally, your dementia-caregiver Dad needs a hand.

He always resists asking for it.

Here’s a research-based approach you can use to 1) recruit support for Dad, and 2) follow up to let helpers know they made a difference.

Man driving open convertible with 2 dog
Photo by Tim Mossholder on Unsplash

Why Dad feels vulnerable asking for help

In her book Reinforcements, researcher Heidi Grant finds that we help others because we see ourselves as helpful. When we ask for help (and when we ask the right way) people say yes for their own reasons.
One thing stands in the way. Asking for help means taking a risk.

When Dad says he’s avoid asking for help because it’s easier to do things himself, he’s right.

The “I’ll do it myself” approach helps Dad avoid something called social pain. What Dad is yet to realize is that there are risks that come with a lone wolf approach to Alzheimer’s caregiving, both physical and emotional.

Imagine what a great gift you’d be giving if you stepped in and managed support for him.

How to get the help Dad needs

1. Make Explicit, direct requests for help

2. Be Reasonable

You are likely to find a helper to bring a hot meal on a specific night.

You are less likely to find a helper to bring a hot meal every Thursday night.

3. Take what you get

Maybe your potential helper is available at a different time of day, another week, or alternate month. Perhaps they are better at visiting with your loved-one than preparing meals. Listen. Consider if you can accept what helpers offer.

4. Respect your potential helpers. Know the reasons helpers help.

  • They help because it’s who they are
  • They help because they choose to help
  • They’ve been there
  • They’re there right now
  • They feel the same way

ALWAYS Let the helper know their help was effective

Helpers are most satisfied when they know their help was effective. You make this happen when you communicate with those who helped through thank you texts / emails / calls or snail-mailed notes.

  • Let the helper know the test they drove Mom to was successfully completed on time, and why that was important.
  • Let the helper know how comforting it was to Dad to have a hot meal waiting after a long day at the hospital.
  • Let the helper know that the get-well card campaign she started has lifted your parents’ spirits day after day.

 

To learn to effectively overcome social pain in order to ask for support, read:
Halvorson, H. G. (2018). Reinforcements: How to get people to help you. Boston, MA: Harvard Business Review Press.

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.

Phone support for an Alzheimer’s caregiver parent (Plus/Delta Review)

ALZHEIMER’S, YOU AND YOUR SUPPORT

IMPROVEMENT OPPORTUNITY: BUILDING TRUST

My Dad considered Mom’s Alzheimer’s care to be his duty. To Dad’s credit, he took full command of Mom’s care and served her with honor.

I knew Dad would eventually need to trust others to help him. One countermeasure I tested to build this trust was to encourage Dad to call me for help.

HOW IT WORKED

Back then, Dad was yet to own a smartphone or a computer.  He also had yet to understand how these tools could make his life easier. I invited Dad to call me to ask for help getting things he needed.  He could call when he needed the phone number of the local shop that sharpened lawn mower blades. He could call when he was yet to have the time to go from store to store to shop for replacement vacuum cleaner bags only Mom knew where to find. I’d do the research and call Dad back, always careful to swap the information he requested for updates on Mom, her behaviors and her well-being.

As the strain of caregiving increased, and Dad’s trust that I was there for him grew, he began to call me for other kinds of support.  Dad’s calls took on a new tone. Mom had misplaced her engagement ring that morning and Dad had spent three hours on the hunt.  Mom had wandered away in the middle of cleaning the bathroom sink and now Dad had to finish his chores and hers as well. Dad was exasperated and needed a friendly ear.

As Mom’s Alzheimer’s progressed, and Dad’s trust in me to support him grew, so grew the complexity of the support issues.  How can Mom get an accurate eyeglass prescription when she always tells the Optometrist her vision is fine? Is cataract surgery a good idea for Mom considering that she has Alzheimer’s?

WHAT WENT WELL (Plus)

  • Phone support kept parent/adult-child lines of communication open.
  • Frequent calls kept me in the loop on daily events in my parent’s lives.
  • Gathered valuable intelligence during daily chats that would have been missed with a once-a-week call.
  • Built Dad’s trust that help could be found to meet his caregiving needs.
  • Built Dad’s trust that I could help from 2 hours away.
  • Became an ear-witness (we had yet to have video chat) to Dad’s need for more sleep.
  • Became an ear-witness to Dad’s need for more private time.
  • Kept up-to-date on new evidence that the Alzheimer’s was progressing.

WHAT I’D CHANGE IF I COULD DO IT OVER (Delta)

  • I’d set firm boundaries around the days and times that I could welcome Dad’s calls.
  • I’d provide Dad an emergency plan to follow when he needed support on my off hours. (For example, the phone numbers for The Alzheimer’s Association’s National 24 x 7 hotline (1-800-273-3900); Dad’s local Area Agency on Aging; Dad’s local Department of Social Services.)
  • I’d keep a log of call date / time / topic.
    • Use to identify our knowledge gaps
    • Use to spot trends in calls
    • Use to identify when to bring in outside expertise
  • I’d care for my own emotional and physical health by involving others sooner.

Your friend on the journey,

Barbara

An Alzheimer’s Love Letter I wish I had sent to my Dad

If I’d have known then what I know now, I’d have sent this Alzheimer’s Love Letter to my Dad.

 

Dear Dad,

Thank you for sharing the news that Mom has been diagnosed with Alzheimer’s. This means that today Mom is the best she will ever be. We should enjoy every moment we have together.
We also need to prepare for what is ahead.

While Alzheimer’s is different in each person, there are common patterns that families with a Loved One with Alzheimer’s share.

Since we would all like Mom to live at home as long as possible, it means that every member of the family will need to lend a hand in Mom’s care. And we will need a lot of outside help too.

The scariest thing I’ve heard is that Alzheimer’s Caregivers usually pass before their Loved One with the disease. The strain of caregiving coupled with normal aging is significant. Given your excellent health today, I agree this sounds unlikely to happen to us.  Yet I’ve heard from adult children who’ve seen their parents go through it. They say that Alzheimer’s care-needs are like an avalanche leaving the Caregiver buried at the bottom.

Research shows that whatever the caregiver’s plan is at the beginning, at some point during Alzheimer’s, an adult daughter or daughter-in-law shoulders some caregiving duties. I know you plan to care for Mom to the end by yourself.  What I’m saying is that since adult children often end up providing care, I want you to keep me in the loop from the start.

Please share Mom’s behaviors as they change.  Keep me in the loop as you take on new chores.  Different from hearing it as complaining, I promise to hear it as an honest barometer of the progress of Mom’s Alzheimer’s.

Let’s start with little steps.  I need to have complete medical histories for you and Mom, and the names and addresses of your doctors.  I need you to sign HIPPA releases allowing me access to your medical records.

Something else I’ve learned.  This is a biggie.  I’ve been advised that since I live two-hours from you, it’s going to be easy for me to be in denial about Mom’s condition. Apparently, the less I see Mom, the less in-tune I’ll be with the progression of her disease.  It will be very easy for me to imagine that the disease is yet to progress.  Especially if I hear very little from you.
Help me make career and life choices for the next decade with complete and current information about you and Mom.

This carries a real risk. If I’m in denial, I may do something counterproductive.  I may take on a work role that requires more time in the office, or more travel time away from you.  I may say yes to an overseas assignment. Each and every one of these times, I need to remember that in the decade to come, I’ll appreciate every aspect of my life that makes me available to you. My flexible schedule. Money in the bank. My work benefits.

Consider the alternative. I could wait for a crisis, then jump in with both feet.  At that point my learning curve will be so steep it will be like the anvil that falls on Wyle E. Coyote’s head in the old Road Runner cartoons.  I’ll be laying on the ground, with stars and bird spinning over my head just when you are most ready to accept my help.

There is one goal we can both aim for.  If you and I do this right, you can survive Mom’s Alzheimer’s.   That’s what I want. I hope it’s what you want too.

Can you support me in these?

Other big picture things we need to address:

  • Updating your wills
  • Putting a Health-care Power of Attorney in place for you both
  • Reviewing your Long-Term-Care Insurance coverage

Next week, we can start talking about you two living closer to me.

I love you Dad,

Barbara

Alzheimer’s Kids Can Join Support Groups Too

ALZHEIMER’S, YOU AND YOUR WELL-BEING

Sometimes the way to get a clean look at something is to see it in the rear-view mirror.

It is two-and-a-half years since my Mother’s Alzheimer’s journey reached its end.  At the oddest moment it is like a cog spins and a gumball rolls through the chute and spits out another lesson I wish I had learned during those crazybusyjampackedeverchanging Alzheimer’s years.  

In a recent conversation with a friend, I mentioned that my Dad’s Alzheimer’s Support Group had been a terrific resource to him during Mom’s illness.  It became a place of acceptance and a place of honesty for him.  My friend asked in response, if I had attended a Support Group during my Mother’s Alzheimer’s also. 

 

Only once did the possibility that I actually could join a Support Group cross my mind. It was when Mom was in Hospice.  That day I felt like I had been inside the dryer on an extra long cycle, spun and flipped again and again. My nerves jangled from the incoming news from the mountains.  I reached out to a friend for a support group recommendation.  She shared the name and address of her group, and mentioned that they met monthly.  This month’s meeting had been the night before, so I marked next month on the calendar. 

Within a week, Mom’s journey reached her final destination in heaven.

So with the clarity of hindsight, I now encourage all Alzheimer’s Kids – those serving as the primary Caregiver, as well as those who are in touch with their Caregiver daily, weekly, monthly or quarterly –  to find an Alzheimer’s Support Group and join.  To make it their Alzheimer’s Support Group a priority.  

Why?  Because the people at the Alzheimer’s Support Group are their people now.  These people will understand where they are, and support them where they are going.

Today I’m seeing Alzheimer’s Support groups in the rear-view mirror, from many miles down the road.  From this vantage point, it looks like a candle that may have made my trip brighter, warmer, and more peaceful.