Having a safe place to share the little known truth of what’s going on with your family can be incredibly empowering, like with Jessie.
Jessie’s mom had suffered from undiagnosed mental illness for most of her life. Now at 62, divorced from their father and living with Jessie’s sister, her mother’s behavior was becoming unmanageable for both Jessie and her sister. They had been immobilized by their mother’s mental illness for years and had no clear understanding of their options.
Jessie’s Ways & Wane care advisor provided possible solutions, including the steps for establishing guardianship in their state. Jessie shared: “I provided [Ways & Wane] with a multitude of issues/problems and they have provided me with as much, and even more, in possible solutions.”
After her work with us, she described herself as having “optimism and hope” for her family’s future for the first time in a long time.
The hospice representative called to let me know that dad qualified for the program.
I told her, “I think we’re still okay to hold off.”
Two weeks later she called, “Do you want to rethink hospice care?”
I said no.
My dad’s dementia had become more severe, but he was still talking and eating well and he (mostly) knew who I was. That said, no one knows your person like you do. You can see how they are slipping away while others may not detect it.
It sounded so final to engage hospice.
We had no idea how quickly he would decline. Within two weeks, he was gone.
While I do my best to live my life without regrets, believing first to trust that things do not happen by chance, I wondered how his last days would have been different had we engaged hospice sooner.
Could I have been with him in those last moments? Would he have been more comfortable? Would my sister and brother and his grandchildren have been able to say good-bye?
A nurse would have visited him frequently, making sure he was comfortable. We would have had someone to call 24 hours a day, instead of the reluctant once-a-month visit from his doctor’s office. There would have been on-site medication oversight and administration. We would have truly known his condition.
People are either afraid of hospice or wish they’d engaged hospice earlier. I’d like to highlight a few of the facts here, particularly as it relates to dementia, and explain how hospice can support the caregiver with respite care.
Three points about hospice according to Medicare
To qualify for hospice care, a hospice doctor and your doctor (if you have one) must certify that you’re terminally ill, meaning you have a life expectancy of 6 months or less.
When you agree to hospice care, you’re agreeing to comfort care (palliative care) instead of care to cure the illness.
You also must sign a statement choosing hospice care instead of other benefits Medicare covers to treat the terminal illness and related conditions.
One of the services hospice provides is respite care for the family caregiver.
Especially when caring for someone with dementia or Alzheimer’s, the mental, emotional and physical toll on the caregiver can be enormous, making respite for the caregiver essential.
Here are four things to know about respite care through hospice:
Depending on the terminal illness and related conditions, the plan of care the hospice team creates can include inpatient respite care, which is care provided in a Medicare-approved facility (like an inpatient facility, hospital, or nursing home), so that the usual caregiver can rest.
Your hospice provider will arrange this for you.
Patient transport is included and you can stay up to 5 days each time you get respite care.
You can get respite care more than once, but only on an occasional basis.
For more information about paying for care, check this video by Author Cameron Huddleston.
Dementia is a disease with no cure so it qualifies as terminal, which qualifies a dementia patient for hospice. But how then is life expectancy predicted?
Crossroads Hospice and Palliative Care, a private company serving a handful of states, mainly in the Eastern U.S., says this about eligibility. For patients with dementia, it may be time to consider hospice when the patient’s physical condition begins to decline. According to Crossroads, some key things to look for include:
A diagnosis of other conditions as COPD, CHF, cancer or congenital heart disease
An increase in hospitalizations, frequent visits to the doctor and/or trips to the ER
A diagnosis or pneumonia or sepsis
Weight loss or dehydration due to challenges in eating/drinking
Speech limited to six words or less per day
Difficult swallowing or choking on liquids or food
Urinary and fecal incontinence
Unable to sit upright without armrests on chairs or may slip out of chairs and require sitting in special chairs
Unable to walk without assistance such as a walker or now requiring a wheelchair
Unable to sit up without assistance (will slump over if not supported)
No longer able to smile
Check the Hospice Foundation of America for what is included and not included in hospice care, how to choose a provider and how to begin the process.
This Sunday, June 13th marks the two year anniversary of my dad’s last breath on this earth. I’ll be taking off on a family road trip that day and thinking a lot about how much he loved to drive and explore and what an honor it was to call him daddio.
May you find joy in loving one another well.
Elizabeth Dameron-Drew is the Co-founder and President of Ways & Wane. She walked closely with her own father through his years of waning. She lives near Seattle with her two teenage sons, husband and two rescue dogs. When she’s not working on Ways & Wane she’s probably creating books, doing research work or planning a dinner party while listening to the rain and thinking about her next creative endeavor.
Are you grieving? Or are you slowly losing someone to dementia? Interviewer Elizabeth Dameron-Drew of Ways & Wane talks to Emma Payne of Grief Coach, a texting service to support people who are grieving, and the friends and family who want to support them, but often just don’t know how.
Mother’s Day is frequently a day filled with emotion, especially if your mother is suffering from dementia. Acknowledging the emotion—the joy, the grief, the regret, the love—and creating a plan for the day, transforms it. I gathered some sweet ideas for you, whether your own mom is still with you or not.
If your mom is with you (but not entirely), try these ideas.
Share happy memories about her from the past, reminding everyone who she is.
Celebrate all her senses with her favorite music and yummy scents.
Get a manicure together. (Maybe the grandchildren can do nails for you & grandma!)
Look at a picture album together.
Tell stories from her life where she was funny/bright/successful, etc.
Take an easy trip to a park or a beautiful drive. Just get out of the house.
Simply cherish that she’s still with you, even if the dementia has caused her not to know you.
If your mom has passed away, remember her in one of these ways.
Try out a hobby she loved. Maybe doing so will provide new insight into her.
Repurpose a piece of her jewelry.
Make a donation in her honor.
Frame her handwriting (maybe it’s a recipe card or a note).
Spend time with others who loved her too and enjoy reminiscing.
Celebrate another mother in your life.
Take a break from social media so you aren’t bombarded with Mother’s Day pictures that could make the day even harder for you.
If you anticipate that other family members will be grieving that day too, consider including them in the planning of something.
Whatever the day looks like for you, may you feel love and express love!
Elizabeth Dameron-Drew is the Co-founder and President of Ways & Wane. She walked closely with her own father through his years of waning. She lives near Seattle with her two teenage sons, husband and two rescue dogs. When she’s not working on this platform she’s probably creating books, doing research work or planning a dinner party while listening to the rain and thinking about her next creative endeavor.
Plan a Christmas Card Signing Party with your Senior!
We’ve been sending Christmas cards for about 145 years. Well, I haven’t personally been sending them that long, but that’s when the first Christmas card originated in the United States.
Most of the seniors in our lives look forward to getting their mail from the mailbox, finding personal notes and sweet cards from generations of friends. Even now in the electronic communication age, we can all relate with the pleasure of finding personal mail in the mix of bills and solicitations.
Would they love to receive cards (especially in assisted living or a nursing home) and value mailing them out? If your senior is no longer able to send Christmas cards themselves due to dementia or physical limitations, you can help make that happen! Even if your senior doesn’t need help, you’ll enjoy this activity together.
My senior is independent
Make it a “card party”! Either over zoom or in person . . . put on some holiday music, both of you mix up some hot chocolate with extra whipped cream (I won’t tell if it has peppermint schnapps too). For fun, help them seal, address and stamp the cards.
Here’s the key—and it works over Zoom too—encourage them to share memories about the people to whom they are sending the cards. Make a point of listening carefully and asking questions.
My senior needs some help
Show up with:
Cards: This pack of 24 cards has 4 different designs in a traditional style. An alternate is this set of 12 peace dove cards with a general holiday message.
Stamps: Did you know you can order holiday stamps from Amazon?
A holiday beverage like a pack of Starbucks VIA Instant Coffee in a holiday flavor (just add hot water)
Queue up your senior’s favorite festive music on your phone.
Once completed, drop them in the mail for your senior.
My senior needs (a lot of) support
Show up with the supply list from above and maybe choose a 12 card pack so it’s not too tiring for dementia patients. Consider coming with 12 print outs of a favorite poem of your seniors or a special recipe of theirs and include that with the card.
Add music and a fun drink to the process and it’s a party! Maybe all they do is sign the card and/or lick the envelope, but they are able to send a personal holiday message that will be a sweet gift to those that care about your senior.
Add some silly and fun . . .
Get a pack of festive Christmas headbands and do a photoshoot for your senior! You can easily print a 4×6” collage photo at your local Walgreens, CVS, etc. in an hour. The photos can be the cover for a set of blank cards (attach the photo with double sided sticky tape) or be slipped inside the card.
May you find joy in loving one another well, even if you aren’t wearing a reindeer headband.
Elizabeth Dameron-Drew is the Co-founder and President of Ways & Wane. She walked closely with her own father through his years of waning. She lives near Seattle with her two teenage sons, husband and two rescue dogs. When she’s not working on this platform she’s probably creating books, doing research work or planning a dinner party while listening to the rain and thinking about her next creative endeavor.
Maybe it was for me, but I thought about him as well. I didn’t want to hand him child’s toys, even when in this stage of dementia.
At 79, when his body and mind were compromised by dementia, I’d visit with him and we played all sorts of activities and games. When it was time for me to go home, I hated leaving him with nothing to keep his hands busy. Handing him something that looked like a child’s toy felt like an insult to him and well, it just made me feel sad. So, I present five (not childlike) tactile fidget gift ideas for your senior with dementia. The benefit? To help them stay busy and feel calm.
Five gratifying and useful dementia-friendly gift ideas
These sculpture-like metallic tangles twist around in endless combinations and are light and easy to manage.
For animal lovers, these realistic looking, battery-powered cats and dogs move, respond to touch and even purr, but without the care required by a real pet. They aren’t inexpensive, but are a lot less than a real pet would cost.
Do an online search for a slide fidget widget—a handsome and smooth wooden form that fits easily in one’s hand and has beads that slide back and forth on a secure band.
Introduce a sensory activity through a tactile book which can act as an amazing rehabilitation tools for patients who have suffered a serious injury or stroke or have Alzheimers: they help restore fine motor skills in adults, improve concentration, and alleviate stress.
Like the tangle mentioned above, this wooden art ball fidget toy can be twisted and formed. Its larger size makes it easier to manage. It comes in two sizes and either a natural wood finish or in black/white.
Note: We recommend these products because we think they’re good and we wanted to save you time. Some of them may earn us a bit when you click on the link.
May you find joy in loving one another well, despite dementia!
Elizabeth Dameron-Drew is co-founder and president of Ways & Wane. She walked closely with her own father through his years of waning. She lives near Seattle, Washington with her two teenage sons, husband and two rescue dogs. When she’s not working on this platform, she’s probably creating books, sewing, or vacuuming, or cooking while listening to the rain and thinking about her next creative endeavor.
“What am I supposed to do? What am I supposed to do now?”
Being repeatedly asked the same question by anyone, whether they are 2 or 70, is frustrating. When it means they are fading cognitively, feelings of grief get mixed into the dynamic.
How can you respond and save your own sanity? Here are 7 practical tips:
Give yourself permission to be sad about your senior’s mental decline and mourn the fact that they are no longer who they once were. It’s okay to be sad about that. It’s normal and actually loving.
Remember that your senior is asking repeated questions because of damage to their brain cells, whether it’s because of a stroke, a form of dementia, a traumatic brain injury or something else they are now cognitively disabled. They wouldn’t choose to be confused and aren’t trying to annoy you.
Look for a reason behind the questions. Are they trying to communicate something else altogether? Does the behavior happen at a particular time of the day or around particular people?
Think about how they are feeling, not what they are doing or saying and respond to their emotion, not their behavior.
Refocus their energy on a new activity, even if it’s just a fidget type gadget that keeps their hands busy.
When responding to them, do your best to keep your voice calm and don’t try to argue or use logic. The latter response will likely escalate their confusion by adding anxiety.
Restate what they are saying and answer their question as best you can with simple explanations. Consider using visual tools like calendars, clocks or photographs to help them remember.
This video from UCLA Health offers insights and practical tips for managing repetitive questions.
May you find joy in loving one another well.
Elizabeth Dameron-Drew is the co-founder of Ways & Wane. She walked closely with her own father through his years of waning. She lives near Seattle, Washington with her two teenage sons, husband and two rescue dogs. When she’s not working on this platform she’s probably creating books, sewing, or vacuuming, or cooking while listening to the rain and thinking about her next creative endeavor.
He careened around the grocery store aisles driving the scooter they provided. I followed, picking up fallen cans and apologizing to shoppers who jumped out of his way.
My 80-year-old father was a home chef who was thrilled to put the dinner of his choice in his basket: ribs, asparagus and potatoes.
Sadly, those same ribs, asparagus and potatoes were molding in his fridge two weeks later.
Why didn’t he cook them? This really struck me because he loved to cook. Looking back, there were many reasons that all came down to . . . he just needed more help.
I think too, he was pretending that he was more capable than he truly was. We didn’t know that in the next year he would develop dementia and live in a hospital ICU, a nursing home, an assisted living memory care unit and a senior group home.
Look for these warning signs in our own senior’s home. Your elderly mom or dad may need more help than they are letting on.
Environment
The yard or house is not maintained.
There’s nothing to eat in the house.
The fridge contains expired or spoiled food.
Potholders or pans contain burn marks or a burning stove is left unattended.
There are multiples of the same item–10 bottles of ketchup?
Your senior has traffic tickets or the car has dents.
The car’s warning lights are on–gas, oil, check engine.
Social
Your senior stops doing the things they used to enjoy.
Your senior is spending days without leaving the house.
Your senior would benefit from someone checking on them every day.
Your senior complains of feeling lonely or abandoned when you are away.
Financial
Piles of mail in various places.
Unopened personal mail.
Increased thank you messages from charities.
Letters from banks or creditors.
The mail is unopened or bills are unpaid.
Up Close
Your senior is unsteady, wobbly, dizzy or very weak.
Your senior is looking unkempt, skipping showers, forgetting to shave.
Your senior has gained or lost weight, potentially having difficulty with cooking or shopping.
Your senior refuses to take medications or seek medical treatment.
Their personality has changed, become irritable or quiet.
To do lists that never seem to get done.
The house is overly cluttered.
Your senior is recovering more slowly from injuries or surgeries.
Cognitive
Your senior misses appointments, gets lost, forgets important information.
Your senior has difficulty performing familiar tasks.
Your senior substitutes unusual words
Your senior forgets recently learned information.
Your senior puts items in illogical places.
Your senior loses initiative and becomes passive or lethargic.
Your senior has trouble following directions.
Is it time to have a gentle conversation with your mom or dad about assisted living or in-home care?
Find templates and comparison tools for that housing or in-home help with the Digital Social Worker tool. It is full of curated links and to help you compare in-home care, a nursing home or assisted living options.
If you want the Warning Signs Checklist from above, download it here.
Now may the Lord of peace himself give you peace at all times in every way as you help your senior in their waning phase of life.
Mother’s Day is frequently a day filled with emotion, especially if your mother is suffering from dementia. Acknowledging the emotion—the joy, the grief, the regret, the love—and creating a plan for the day, transforms it. I gathered some sweet ideas for you, whether your own mom is still with you or not.
We’ve been sending Christmas cards for about 145 years. Well, I haven’t personally been sending them that long, but that’s when the first Christmas card originated in the United States. 
He careened around the grocery store aisles driving the scooter they provided. I followed, picking up fallen cans and apologizing to shoppers who jumped out of his way.