Dementia Teams

Say you are ready to let others participate in caring for your loved one living with dementia. Maybe this is driven by concerns for your health. Maybe you’ve realized that your patience is shorter than what a day of caregiving requires. Whatever the case, now you are ready to open the door a crack and let someone in.

Where do you start?

Peer support
Dementia caregivers face unique situations every day. While each event is specific to you and your loved one, the feelings they spark are like those experienced by others walking in your shoes: frustration, anger, shortness of patience and more. When you share your feelings, in a safe setting like a support group, you feel understood, validated, and confident.

You’ll be prepared to wake up and give caregiving another try in the morning. Call 800-272-3900 to see if the Alzheimer’s Association has an online or in-person support group at a time that works for you.

“If you ever hear of someone who is completely successful, healthy, and happy as an Dementia caregiver by going it alone, let me know. That person should be written up in the medical journals and maybe even considered for sainthood.” https://mytwoelaines.com/

Online Resource Guru
During dementia you’ll need to identify many new resources and services. This is where your adult children, friends and young family members can help. They are experts at finding things on the internet. Ask if you can contact them for help finding resources online. You’ll likely be surprised at how quickly they say yes.

For them, finding a phone number, a street address, and other things is fast and easy. The bonus is that they will like you more after they help you out… and especially after you let them know they made a big difference in helping you find what you needed.

Day Brightener
It’s common for dementia caregivers to need an extra dose of smiles. Depending on the personality of your out-of-town children, friends, and family members, this may be a great way for them to contribute to your dementia team. A smile can be shared through a greeting card, or a mailed photo, a letter, a phone call or a hundred other small ways.

Local care team members can brighten a day by delivering balloons, flowers, and healthy treats like a seasonal basket of fruit. Also, it’s never been easier to have a meal delivered. Let local care team members know if you are open to them spending time with your loved one while you take a walk or run an errand. Also let them know if you and your loved one are open to a two visitors – one for your loved one and one for you.

Spiritual Advisor
Since dementia is ultimately a life-ending disease, having a spiritual caregiver on your team is a tremendous comfort. A Spiritual Caregiver can plug you in to worship services and studies that provide hope and strength.

Companions
Paid helpers for people living with dementia range from aides to LPNs to RNS. Hire someone based on the support your loved one needs. For example, during early and moderate Alzheimer’s, an aide who provides companionship and stimulation may be ideal. Another option during this stage is to enroll your loved one in a nearby adult day program. My extroverted mother who loved people and activities thrived at her adult day program for years.

During moderate to late Alzheimer’s, your loved one may need someone with additional training. Registered Nurses (RNs) are appropriate when your loved one needs medical attention during your absence, perhaps due to a secondary condition.

Agencies are available to provide home health workers. Ask if you can start with someone a few hours a week to see if they are a good fit with your loved one and their needs.

Paid companions can be essential to your goal to provide sustainable caregiving for your loved one. Your ability to care and coordinate care for your loved one five or even ten years from now is dependent on how you manage your energy and how low you keep your stress levels today.

Household Helpers
You’ve likely taken on more of your partner’s chores over time as they became less able to complete them. Without realizing it, you may now be preparing meals, doing the grocery shopping, doing the laundry, and keeping up with house cleaning in addition to the chores you’ve always done. These can be a great place to incorporate outside help.

It may be time to ask a child or friend to help you set up online grocery ordering and delivery. Perhaps it’s time to hire a housekeeper to keep up with dusting and vacuuming as well as doing the laundry. Ask your friends and neighbors for recommendations. Consider trying prepared meals from the grocery or local shops for your evening meal. This lets you focus on your loved one’s safety as they sundown this time of day.

Next Steps
“I don’t want to burden my children”. It’s a common refrain among parents. Yet, if your child or your nephew or niece is a person who likes to help, they may be waiting for you to suggest a way for them to get involved. They may be glad to be invited to do online research or shop for a greeting card for you.

Remember these four things: 1) People who like to help others believe that if you want help, you’ll ask for it.  2) You must make them believe that you actually want help. 3) You must make them believe that they personally are responsible for helping you. 4) And finally, they must be able to provide the help you need.

Helpful people can be found in your church and in your neighborhood. Remember to reach out to your local Area Agency on Aging and your local chapter of the Dementia Association for resources, many of them at no or low cost.

Bringing others into caregiving means your role transitions from team “player” to team “player/coach”. You’ll be recruiting, directing, and inspiring others to give your loved one the kind of care you want them to receive. Even when you do a little less hands-on dementia caregiving, know that you will always be your loved one’s caregiver.

Sustainable Caregiving

What are you doing today to guarantee your loved one living with Alzheimer’s will be cared for five or ten years from now?

You are the person she relies on most. She needs your hands-on care. She needs you to coordinate and direct her support team. To her, you are an essential worker.

In the future she’ll rely on you more than she does today.

My Dad’s approach to caregiving was to invest his health 100% in caring for my Mom during her Alzheimer’s. To “leave it all on the field”. Before we knew it, Dad had lost one-quarter of his body weight and was down to skin and bones. With Dad clearly struggling, Mom’s doctor recommended that Mom be admitted to a locked memory unit. This got Mom the care she needed. It also saved Dad’s life.

It’s time to think about sustainable caregiving for the sake of your loved one. You want your caregiving to be able to withstand the passage of time. So that in five or ten years when she needs you most, your mindset and your health, continues to support you both.

Consider these building blocks to sustainable caregiving.

  1. Caregiving breaks.

Professionals call caregiving breaks “respite”. These are times when someone, other than you, cares for your loved one. This someone may be a professional, a family member or a volunteer.

Your ability to provide sustainable caregiving depends on you using respite time wisely. Catch up on your sleep, go to your medical appointment, get some exercise, or do something that brings you joy. Remember this is an investment in the future care of your loved one. When you return to caregiving, you will do so with more resilience. You’ll be better able to face everything caregiving requires today and in the future.

  1. Motivate yourself with learning.

If you’ve ever measured your success by the size of your boat, the initials after your name or the RPMs on your sportscar, you probably understand the link between success measures and motivation.

If you’ve spent even one day as an Alzheimer’s caregiver, you probably realize how tricky it is to choose an Alzheimer’s caregiving success measure. If you measure Alzheimer’s caregiving success by the improvements you see in your Loved Ones’ behaviors, you set yourself up for failure. That’s because Alzheimer’s care always grows more complex over time.

What you are looking for is a success measure that motivates you to grow in the direction of providing more sustainable care.

Consider learning as your Alzheimer’s caregiving success measure.

Praise and reward yourself every time you ask a question about your loved one’s Alzheimer’s. A successful day is a day you ask yourself “why is Mom is so restless before dinner?”

Why is this a success? Because asking a question puts you in the mindset of seeking an answer. Before long, you may realize that it is sundowning that is driving Mom’s behavior. If you had never asked the question, you may have yet to ever discover the answer.

Caregiving breaks and motivating yourself with learning create a solid foundation for sustainable caregiving. They are long-term investments. These good habits go together with self-care routines like healthy eating, keeping stress levels low, getting enough sleep, and exercise that are good for you and your loved one.

What to expect when Mom has Alzheimer’s

If you have a parent diagnosed with Alzheimer’s, What to expect when Mom has Alzheimer’s  is the course you need now and in the future.

What to expect when Mom has Alzheimer’s prepares you for the years ahead. I created it because it’s exactly what I needed when my Mom was diagnosed.

This course covers what to expect, and how to prepare during every stage of Alzheimer’s. When you are complete, you will be confidently prepared for the progression of Alzheimer’s and its impact on every member of your family.

As the creator, I bring 15-years of life experience as the daughter of a Mom who lived with Alzheimer’s. I’m an award-winning author; a Certified Dementia Practitioner; and a support group leader for adult children of people living with Alzheimer’s.

I designed What to expect when Mom has Alzheimer’s for adult children who have a parent living with Alzheimer’s. For people who are up at night worrying about what is happening to Mom now and what will happen next. If you’ve ever been mystified by an angry comment from Mom’s care partner or have disagreed with a sibling about what is best for Mom, this course is for you. Since you are already busy with work and family, I designed it so that you can learn in modules and exercises that generally take 5 minutes or less.

Watch this promotion video. Register for the course by clicking on the link in the comments section.

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

Success Measures for Alzheimer’s Caregiving

ALZHEIMER’S, YOUR PARENTS, and YOUR SUPPORT

 “The cure for boredom is curiosity.  There is no cure for curiosity.”
– Dorothy Parker

If you’ve ever measured your success by the size of your boat, the initials after your name or the RPMs on your sportscar, you probably understand the link between success measures and motivation.

If you’ve ever spent even one day as an Alzheimer’s caregiver, you probably realize how tricky choosing an Alzheimer’s caregiving success measure can be. If we measure Alzheimer’s caregiving success by the improvements we see in our Loved Ones’ behaviors, we set ourselves up for failure. Alzheimer’s behaviors always grow more complex over time. Measuring success by capping the number of prescriptions our Loved One takes highlights little more than the minimal effectiveness of available treatments on the market.

What do we do? Give up?  Stop trying?

My caregiving story is that my Mom had Alzheimer’s for fifteen years. My father was Mom’s primary caregiver. I experimented with dozens of roles I could fill to contribute to my parent’s well-being from ninety miles away.  Finally, I stumbled on the role of ‘caregiver-to-the-Caregiver’.  I chose to support my Dad’s well-being, so he could be his very best self in caring for Mom.

Determined to find a way to maintain my positive motivation in this modern and under-recognized caregiving role, I experimented with handfuls of success measures to see what sustained my motivation best. The bonus benefit was that what motivated me best also gave me a fresh perspective on caregiving.

What worked for me was to give myself credit each time I got curious or learned something new. I made it into a game.

Give it a try and see if it gives you a fresh perspective on caregiving.


RULES OF THE GAME

  1. GET CURIOUS

In this game you get credit for doing a good job every time you get curious.

To start, challenge yourself to see things differently. Start by asking interesting questions about everything involved in your caregiving. (Interesting questions often begin with: who, what where or when).  In my case my questions were about my Mom, my Dad, their home, their interactions with me, their decisions, their medical team – everything.

For example,

  • Who is doing all the chores that Mom used to do?
  • Does Dad know how to do laundry?
  • What reasons might Dad have to kick me out of the house at 4 pm?

At this point, give yourself credit for doing a good job because…

  • You’ve followed the rules, or…
  • You’ve avoided extra work by asking questions rather than rolling up your sleeves, or…
  • You’ve put your parent’s needs first, or…
  • You’ve asked important questions that lead you to the truth.
  1. CURIOSITY = GOOD JOB

If your Dad does something as unexpected as to kick you out of the house, you can either give up out of frustration, or consider that there’s likely something more to it.

That’s why the next step in the game is to get curious about what happened. And about the events surrounding it.

For me this lead to more questions…

  • Maybe Dad is stressed about cooking dinner?
  • Maybe there is only enough food for two?
  • Maybe something happens this time of day that I am yet to understand?

Again, at this point in the game, to get credit for doing a good job all you need to do it exercise your curiosity.

  1. LEARNING = GOOD JOB

As you get curious, curiosity opens the door to learning.  Pour your curiosity into an A3 or a pair of Current State / Ideal Future State sketches.  What you create will help you see many things clearly for the first time:

  • Perhaps something does happen around 4 pm.
  • I seem to recall Dr. Noel teaching us about something called sundowning. It happens to people with Alzheimer’s at dusk.  They become agitated. Sometimes they wander.
  • Does Mom wander the house while Dad cooks dinner? Wow – that would stress him out for sure. Is Mom sundowning?
  • Maybe Dad needs ideas for simpler meals to make this time of day easier.
  • It’s been a while since I visited my folks overnight. I’ll ask Dad if I can spend the night. I should bring dinner. I’ll observe.
  • I’ll call Dad today and ask if I can come next week.

Here I learned that:

  • I need more information,
  • It’s time for an overnight visit with Mom and Dad, and…
  • I should bring dinner

Again, in this game, you get credit for doing a good job whenever you learn. For example, when…

  • You’ve created an action-plan that promises to lead to more learning, or…
  • You’ve discovered the right and only course of action through your intense research and questioning, or…
  • You’re being a good daughter/son by prioritizing your parents needs over your own, or…
  • You’ve chosen your own path forward.
  1. GET CURIOUS AGAIN

With an idea to visit Mom and Dad in mind, I now have the chance to get curious again.

  • How stressed is Dad in the morning? Afternoon? Evening?
  • How does Dad’s stress impact the way he cares for Mom?
  • What can I contribute that might make life more peaceful for Mom and Dad?

Give yourself credit for doing a good job whenever you engage your curiosity.

SCORING

Add up your credits.  These credits serve as evidence that whatever direction the health of your Loved One takes, you are in fact doing a good job caregiving. Use these credits to motivate and reward yourself.


SUMMARY

  • The opportunity to care for a Loved One with Alzheimer’s IS A GIFT.
  • IT IS NORMAL to need a fresh perspective during the darkest days of caregiving.
  • The next time you are longing for a fresh perspective, ask yourself what evidence can I use to measure the impact of my caregiving.
  • Give this a game a try. Consider that:
    • Curiosity and learning are skills we have been using since we were born.
    • Curiosity and learning fit into every schedule since they happen while we do other things.
    • Curiosity and learning fit in every budget since they are free.
    • Curiosity and learning can become good habits during and after caregiving.

Curiosity and learning became ways to reward myself with positive affirmation.   After all, usually the only one there to recognize and reward yourself for your caregiving is you. Once I believed I was doing a good job, it gave me more peace, patience and joy with Mom and Dad as I cared for them.  That’s all the evidence I need to use this approach again the next time I need a fresh perspective on caregiving.

Your friend on the journey,

Barbara


Learn more:

Want to ask better questions?  Research based recommendations are found in this Harvard Business Reviews Ideacast  https://hbr.org/ideacast/2018/05/ask-better-questions.html

Want to form a habit?  Download this free .pdf from Charles Duhigg, author of The Power of Habit  https://charlesduhigg.com/want-to-make-a-habit/

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

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, family relationships and Caregiver survival

ALZHEIMER’S, YOU AND YOUR FAMILY RELATIONSHIPS


By the time you’ve found this post, you’ve probably learned a thing or two about Alzheimer’s. You probably know that today – in March 2018 – there is no way to stop, slow or reverse this disease. Perhaps you’ve read a few terrifying statistics.  You’ve probably already seen enough photos of frail, gray-haired people to last a lifetime. If your heart is pounding and your palms are sweating, you are in good company.

Alzheimer’s is a tough diagnosis to hear.  It requires effort to accept. While Alzheimer’s is busy degenerating the brain of one family member, caring for that person chips away at the physical and mental well-being of other family members. 

I had a Mom with Alzheimer’s and a Dad who was her Caregiver. Through our fifteen-year journey, I learned first-hand that we children will be involved in our parent’s Alzheimer’s.  Our choice is whether to raise our hands to volunteer or wait to be conscripted.

I’m here to prepare (adult) children for family-life with a parent with Alzheimer’s. What good is preparing?  Preparation gets you ready to respond to the daily surprises that come with Alzheimer’s.

What kind of surprises are on the way?  Here’s one that flipped my thinking around for good.  I realized that my Mom’s Alzheimer’s diagnosis actually meant that two (2) family members needed extra care:  my Mom AND my Dad (Mom’s Caregiver). 

How serious is the Caregiver’s need for care?  Research shows that the Caregiver usually dies before the person with Alzheimer’s. So, pretty serious.

If you’d like to give your Caregiver a chance to survive Alzheimer’s, you’ve come to right place. I’m sharing what I’ve learned from fifteen years of trial-and-error. How about we move forward together?

If you’re curious about what Alzheimer’s might bring in the next decade of your life, watch this short (less-than-6-minute) interview. Guess which of us is more nervous talking about Alzheimer’s. Maybe we have something in common with you?

Your Friend on the Journey,

Barbara



PATTERNS IN TIME Order today

  • 10 year timeline
  • Changes in caregiving
  • Resources that helped
  • How out-of-town children can help

 

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Adult children need support through Alzheimer’s too


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