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.
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) 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?
What level of care does Mom need now? How quickly is her condition accelerating?
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?
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.
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.
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.
Can Alzheimer’s really be as big a deal as people say?
After all, my parents and I talk on the phone every week, and Mom seems fine. Sure, the last few weeks she handed the phone to Dad and walked away. But Mom’s always had her moods. And sure, Dad does interrupt our conversations to tell Mom to put down the banana. But I probably should have called at a better time of day.
When a Loved One is diagnosed with Alzheimer’s life changes for every person in the family.
Acceptance comes in waves, with the hush of denial in between.
Let’s say you are a family member who wants to support your Loved One and Caregiver through Alzheimer’s. There is a technique you can use to speed up your acceptance. The same technique helps you clearly see the new lives that your Loved One and Caregiver now live.
Here it is: Spend twenty-four hours in your parent’s home.
While you’re there, pay attention to the items listed below. Can you see differences between your parents ten years ago, and your parents today? Notice each of your parents in the morning, afternoon, and evening. Remember: this is a fact-finding mission. The temptation is to jump into immediate improvement mode. Do your best to simply observe. Only when the visit is complete, and you review what you learned, are you ready to identify possibilities that may improve each of your parent’s new realities.
The good news is that even though there is yet to be a cure for Alzheimer’s, there are many ways to improve life for your Loved Ones with Alzheimer’s and your Caregivers. What’s important is that improvement possibilities address what is needed today, and when possible anticipate what may be needed in the next six to twelve months. This requires effort. Observe the following.
Household Safety Checklist by Professor Robyn Gerson, UCSF
Twenty-four hours at your parent’s home will give you a fresh perspective on how Alzheimer’s has already changed their lives. It will speed up your acceptance of the new realities of their lives and yours. And, twenty-four hours will help you identify things in your parent’s lives that you can explore with them as things they may consider improving.
Given all that you learn, this exercise may be the best return you will ever get on an investment of twenty-four-hours. Plan now for a return visit in six to twelve months to see what has changed and what that can teach you.
Your friend on the journey,
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INDEPENDENT LIVING AND YOUR LOVED ONE – When is it time for a change? Alzheimer’s, your parents and their safety Read
If I’d have known then what I know now, I’d have sent this Alzheimer’s Love Letter to my 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.
Dad has learned to cook. He’s learned to charm Mom into clean clothes. He’s learned to do laundry. Here are 11 budget-friendly gifts for your Alzheimer’s Caregiver Dad that will wrap him in love every day. After all, who deserves your love more?
Brighten His Day
Life as a Caregiver means that your Dad is caring for your Alzheimer’s Loved one around the clock. Along with preparing food and providing a safe home, Dad is the household source of love, laughter and joy. That means that Dad needs to be filled with joy enough for two. Here are some reasonably priced gift ideas that Dad and Mom can both enjoy together.
1. A card – sweet, funny, or musical
2. Recent photos, printed and mailed
3. Old photos, printed and mailed
4. A spare phone charger
Make Every Day Easier
Caregivers are on-the-job twenty-four hours a day, seven days a week. They take on household duties more and more as the Alzheimer’s Loved One becomes less able to remember the sequence of steps. So a gift that makes a Caregiver’s day easier is always a great idea.
5. Pre-prepared meals
6. Sign Dad up for online grocery ordering, so he can pick up at the drive-through.
7. Clean laundry / laundry service
8. A simplified wardrobe for Mom. Having only this season’s clothes in the closet, helps her dress appropriately for the season.
9. A clean, orderly living space that is safe for Mom
Before you visit, talk with your Dad to identify a convenient time to arrive. Your Alzheimer’s Loved One has good times of day, and better times of day. Remember that your Caregiver Dad needs a hug and a friendly face as much (or more) than your Alzheimer’s Loved One
10. Try 2 by 2 visits. Visit in pairs. This way, one visitor can talk, listen and laugh with the Caregiver while the other does the same with the Alzheimer’s Loved One.
When did your Caregiver last have a few minutes on their own? The answer may surprise you. Getting a haircut used to be simple, fun errand. So was getting the oil changed. Now, your Mom may come along on these errands (and others) because it is safer for her than staying home alone. Give your Caregiver Dad the gift of a free hour, an afternoon, or longer by caring for your Loved One yourself. Plus, you will learn a lot by walking in his shoes.
11. Take a turn caring for your Mom
Whether you live near or far, whatever your budget, there are many priceless gift options you can give to your Caregiver Father that really will make life easier for him as he cares for your Mom. And remember – a generous serving of love makes every gift better!
“Dinner will be in another hour or so,” my sister Diane greets us as we walk in the door.
“Oh! Are we early?” I ask, checking my watch. I’m the drum major, leading the parade into her kitchen.
Diane faces me, smiling. Ginger Rogers-style, I take three steps backward, out of the conversation circle. Diane is Fred Astaire, stepping forward in time with me.
Diane whispers through her smile. “At some point today, Mom turned the oven off, with the turkey roasting in it. We think it was around noon.” Diane smiles and shrugs lightheartedly. “She was helping.”
I smile nervously and give Diane a hug.
“Our best guess is that an extra hour is enough to thoroughly roast the turkey,” she continues. “We just need to be flexible on the actual dinnertime, OK?” I marvel again at my sister’s calm.
I step into the living room to find Mom sulking, having been asked to excuse herself from the dinner preparation. Dad is pacing back and forth, brow furrowed. I take a deep breath.
“Looks like we have time for a game before dinner!” I say with enthusiasm. “What’s it going to be?”
Since our lives are simple compared to what each day as a Caregiver asks of our Dad, my sister and I were able to take a breath, chose a calm response, and flavor our response to this twist with humor. What we found is that this approach opened up possibilities for us to love-each-other-through-it-all.
Think about it. You could give your Caregiver a precious gift by reminding them that a response like this is available for them to use too. One good demonstration from you could be enough to show your Caregiver how they might approach some of the surprises that come their way each day.
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.
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.
Review results of the “Alzheimer’s & Brain Awareness Month 2017, Alzheimer’s Association Survey” here.
These days Dad is a sapling in an ice storm, twig-thin and stooped under his burdens. Meanwhile, Alzheimer’s has appropriated Mom’s remaining joys.
For five grueling days at Thanksgiving, Mom’s adult day program closes for the holidays. On our call, Dad sounds close to surrender.
To clear his head, Dad takes Mom for a walk in the backyard. Mom trips, falls and sprains her knee. The strain of loading a confused and hurting Mom into the car, coaxing her through a medical exam, and pleading with her to wear the knee brace is like a garden hose to the face.
Dad begins Mom’s application to a Memory Unit.
A true romantic, Dad schedules Mom’s admission for January 15th, imagining a final family Christmas. The dream passes quickly, and Dad awakens to the truth: This Christmas is unique from all Christmases past.
Mom, to her credit, has done everything she can to help us see what suits her Christmas celebration best, given her advancing Alzheimer’s. Mom wants to be home. Mom prefers quiet. Mom’s is calmest in her routine.
After so many years of resistance, Dad surrenders. We plan Christmas around what is best for Mom. Dad decides they will stay at their home, in NC. House guests being more than either can manage, Dad confides that my company, in small doses only, would be welcome. Randy and I tally our hotel points and book a room nearby.
Dad insists that the grandchildren enjoy Christmas at their own house ninety miles away. My sister Diane invites my husband’s parents to join them.
And like that, the Acceptance Christmas plans are settled.
Up the mountain in NC with my parents, we take a fresh approach to Christmas. Dad, Randy and I calibrate all Christmas activities to Mom. Christmas eve at home. A duet of carols, my part with words, Mom’s part a hum.