Should Mom be living alone?

However healthy your Mom is, if she is living alone, she needs to care for herself and her well-being. When you and your Mom disagree about whether this is happening, a neutral third-party tool helps settle the question.

The Lawton Instrumental Activities of Daily Living Scale (ADL) is designed to rate Mom’s ability to:

  • Use the telephone
  • Shop
  • Prepare food
  • Do Housekeeping
  • Do Laundry
  • Obtain transportation
  • Be responsible for own medications
  • Handle finances

The Lawton Instrumental Activities of Daily Living Scale (ADL) gives you clarity around whether Mom needs additional support to get through a normal day.

If you are reading this before Mom experiences a serious health event (such as a stroke or a serious infection) commit to working through this assessment together every six months. This discipline gives you and your Mom the chance to track her changes over time. It also exercises your relationship muscles by starting regular conversations about life-changing and emotionally charged topics before an urgent decision needs to be made.

If you determine that Mom’s abilities are at the point where she needs support in order to live at home, the time has come to discuss next steps.

What considerations factor into Mom’s next living arrangement?

  • What does Mom want?

    Most older adults want to age in place by continuing to live at home. Is this what Mom wants? If so, what supports will Mom need to live a safe, healthy life? Will Mom welcome these resources into her home?

  • Care

    What level of care does Mom need now? How quickly is her condition accelerating?

  • Cost

    What financial resources are needed? Where will they come from?

  • Convenience to friends & family

    Does family intend to visit? If so, will Mom’s new living arrangement be convenient for family visits? Would being located near friends provide more emotional connection than locating near family?

Who gets a vote?

Who gets a vote on Mom’s next living arrangement? How will votes be weighed? Does Mom’s vote count? Do the votes of adult children / family members count? Does anyone else get a vote? If so, who?

Does the vote of the adult child footing the bills count the same as the vote of the adult child providing the most care? Do all adult children get a vote or only the adult children who have been involved in care?

Alternatives

Search engines give the impression that someone living with dementia either lives at home or in a skilled nursing home. In truth, there are a range of care alternatives that may be successful depending on the unique factors of each situation.

 
Contact your local Area Agency on Aging for resources near you.

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.

Are you a Caregiver? Why it matters for you to know

It took me fourteen-years and nine-months to figure out that I was a caregiver. One hurdle was the terminology. To me, the word “caregiver” described my Dad. During Mom’s Alzheimer’s, Dad cared for Mom 24-hours a day, 7-days a week. Using “caregiver’ to describe what I did, well, it just felt wrong. How could the encouragement, love and resources I gave to Dad, measure up to the laundry, meals and baths Dad gave to Mom?

Fourteen-years and nine-months later, I’ve finally accepted that the same word is used to for both Dad’s role and my role. [i] I’ve also realized something more important.

Caregiving is something other than a competition.

What matters in caregiving is 1) that you care and 2) that you give care.

WHY IT MATTERS FOR YOU TO CALL YOURSELF A CAREGIVER

Alzheimer’s caregiving catches almost everyone by surprise. We quickly realize that there is a lot to learn. And that everyone involved has a different perspective about what is best for your loved one with Alzheimer’s.

One thing is for sure. Something happens when you embrace the title of Alzheimer’s caregiver. Doors begin to open. You notice things you’ve yet to notice before. Announcements for events, advertisements for support groups, and registrations for caregiver classes. They seem to almost jump out and call your name. This is because your brain now sees these as pertaining to you. You type ‘Alzheimer’s family caregiver’ or ‘family caregiver support [state]’ into BING, and your odds of finding relevant resources improve dramatically.

Even more doors open when you attend events for ‘Alzheimer’s Caregivers’ in person.  Doors to resources that help with the emotions of Alzheimer’s caregiving. Doors to services you can test out to see if they might help.  Doors to resources that provide breaks from caregiving.

Whether these sound valuable today is of little consequence. They will be valuable someday.

WHEN ONLY A SPOUSE OR LEGAL GUARDIAN WILL DO

Of course, there are situations when only the caregiver who is the legal spouse or guardian will do. In healthcare decisions, durable power of attorney decisions, matters around guardianship of property, financial matters and others. Your attorney and advisors will alert you.

WHEN ANY CAREGIVER WILL DO

Know this: In over fifteen years of my mother’s Alzheimer’s, the occasions that required Mom’s spouse or legal guardian totaled up to a maximum of maybe 36 hours.

Every other minute of every day, if Mom could have defined what she needed in a caregiver, it would have been something like this:

Wanted: A well-rested, patient, alert, informed, cheerful person-to-treat-me-with-love.

Remember:

Everything you do to be this person counts as caregiving.

Everything you do to help the primary caregiver be this person counts as caregiving.

DRAW YOUR CURRENT STATE

To prove to yourself once and for all that you are a caregiver, try drawing a picture of your life right now.  This your current state. Get detailed. Get messy. Have fun.

Put your drawing aside for a day or two. The next time you pick it up, imagine someone else drew it. Try to see the drawing with fresh eyes. From what you see, would you say you are looking at the life of a caregiver?

If your answer is yes, start thinking of yourself as an Alzheimer’s Caregiver now. Someday you’ll agree it made all the difference.


Related Articles:

What your caregiver really wants from you

https://www.theperfectthing.info/2018/05/30/2017-5-31-what-you-caregiver-really-wants-from-you/

Phone support for an Alzheimer’s caregiver parent (Plus/Delta Review) https://www.theperfectthing.info/2018/07/26/phone-support-for-an-alzheimers-caregiver-parent-plus-delta-review/

What 24 hours in your parents’ home can teach you

https://www.theperfectthing.info/2018/07/05/2018-7-5-what-24-hours-in-your-parents-home-can-teach-you/


[i] Denise Brown identifies six different stages of caregiving. Learn about each in Denise’s book: The Caregiving Years, Six Stages to a Meaningful Journey. Available at: https://www.caregiving.com/store/#!/The-Caregiving-Years-Six-Stages-to-a-Meaningful-Journey/p/110722781/category=29969901 and on https://www.caregiving.com