Tag Archives: assisted living

OMG it’s the holidays—Five tips to stay S.A.N.E.

Shamed to eat seconds and thirds of the turkey dinner, loud conversations about uncomfortable topics, menfolk sleeping in the assorted Lazy Boy chairs while womenfolk did the dishes. That about sums up my childhood Thanksgiving tradition. We didn’t dare do anything different lest we offend someone. But times have changed.

Family caregivers tell me they feel stressed to keep up with intense holiday traditions “for Mom and Dad’s sake.” But if one of your parents has any dementia or physical limitations, putting on “the big family affair” no longer makes sense. All the hustle and bustle becomes overwhelming, especially for someone with dementia. Remember the acronym KISS—Keep it Simple Silly—and replace stress with letting go of what you think needs to happen.keep-calm-christmas-ball

Last Christmas our family scrapped the usual tradition of making all the food and ordered it from the local grocery store. We supplemented with some favorites, but overall we let go of the need to be in the kitchen all day. As you enter the holiday season, consider these ideas for creating more S.A.N.E.* holidays:

  • Have smaller gatherings—one of them with hot turkey and the other with cold turkey sandwiches while watching a movie
  • Book a table in your parent’s assisted living or commons room, order food and listen to Benny Goodman tunes
  • Schedule time outdoors and play in the snow or at the beach
  • Gather old photos and help your parents create books to give to younger family members, OR
  • Consider time as your gift: put away cell phones and electronic devices and be present with your loved ones

*S.A.N.E.—Supported, Appreciated, Not guilty, Energized™

Incredible Cost of Giving Care

There is a cost to caring for our parents and loved ones that goes beyond the financial. Our schedules are eaten up by hiring caregivers, going to doctor appointments, answering weepy phone calls, defending our need for time away. Instead of complaining outright, we complain in public restrooms to strangers or at lunch to our best friend, while woofing down a sandwich and surfing the net for assisted living options. We yell at our kids, forgo the workout at the gym, eat out of the vending machine, and ignore those activities that gave us so much joy. They’re our parents, after all! We must take care of them.

Why do we do it? Why do we put ourselves in the role of giving care to our parents or other family? Reach beyond the usual response of, “If I don’t do it, who will?”

In my recent radio show, author Katy Butler shares her caregiving story. Her touching and trying account of looking after both parents will cause you to think. As will Dak’s blog Dying Gone Haywire from 2013.

I understand the pull of wanting to do what we “should,” and needing to set boundaries. I’m here to help and want to hear from you.

I See that you’re suffering; let me provide relief

“When all is said and done, killing my mother came easily. Dementia, as it descends, has a way of revealing the core of the person affected by it. My mother’s core was rotten like the brackish water at the bottom of the weeks-old vase of flowers. She had been beautiful when my father met her and still capable of love when I became their late-in-life child, but by the time she gazed up at me that day, none of this mattered.”

The first paragraph in Alice Sebold’s novel, The Almost Moon, hit me in the gut. A frustrated daughter relieves her mother’s suffering while also setting herself free from the pressures of caring for someone who no longer recognized her as her daughter.

But this is a novel. This is not real life. As soon as I finished the book, I sighed and silently asked the unthinkable, “When will we see a headline about a daughter ‘relieving’ her mother of suffering?”

And then this article appeared. Is that what this is about? When we see a mother-daughter murder-suicide in the news, alarm bells ring. I discussed this with Dak and these are our thoughts in his words:

 

It’s just one case, right? It’s not like this is happening all over the place. This is not an epidemic. It’s just a weird thing is what it is. It’s an isolated incident, that’s all.

And yet, there is a whole lot of mystery to this that opens out into many possible worlds. This story offers very little detail. The authors won’t speculate. This one will.

I can imagine reasons for this happening from many angles.

The mother had a dread disease and no one would listen to her except the daughter who decided to act to alleviate her mother’s pain and then couldn’t live with herself.

The tyrannical mother finally became weak enough for the abused daughter to overpower and kill. Then killed herself.

Sorrow at loss of being useful.
Sorrow for being a burden.
Without hope.
Interior demons hide in the dark and they look like competence to everyone else.
Despair. So many reasons for despair.
Why did she choose a gun?
A belief that there is a better afterlife.
The weight of living is too heavy.
Too much of a burden on the ones you love.
Too much of a burden on the country you love.
Loss of community to death, to convenience, to entertainment and long distance.

What are the solutions here? How do we feel when we read a story like this? I feel my mind reach out to try to comprehend what happened, but why? Do I think I might become a woman whose mother is still alive and have to face this situation myself? No. But I can imagine how it could have felt and I think it would have felt pretty bad. No matter what the story behind the people is, at least one of them was suffering and had no relief in life. We can moralize about her choice, but that doesn’t seem like a solution to me. I feel that it’s wrong to kill, but happy people have no reason to kill. A satisfied society is a safe society.

So these two…hey one of them lived to be 93. That’s some persisting. I don’t think people live to be 93 without figuring a few things out and my feeling is that she had a good way of coping with stress, one that worked. Her daughter made it to 60 and that’s saying a lot as well. (I know we’re not supposed to be impressed with how long we live now compared to the entirety of our previous existence, but I’ve been watching “Cosmos.”)

She was suffering and we were in no position to offer relief. I think the fear is that one day we will be suffering in such a way that we need help for relief and it doesn’t come, or it’s slow to come. What kind of help?

We seem divided from our heritage. We have social media instead of being social, and I think many of us are fooled into thinking that the two are equivalent. There will always be suffering, but what if we were so kind to each other and considered ourselves together as a body rather than individual and separated pieces that we all shared the suffering so it ceased being so awful to any one of us?

I think it’s easy to forget that there are solutions to our problems and they are going to be found whenever two or more of us gather together. Remember who told us to do that? Again here it is easy to get hooked into the story, but the story is alive in us. We are telling the story of ourselves right now. I know I’m not alone in preferring kindness to suffering.

Dak Gustal is a freelance writer and poet living in Randoph, VT. You may contact him at st.augustus@gmail.com

Ew! Nanna and Pappa should not have sex

By Dak Gustal

Oh my! Did you know that sex is such a big deal?

I sure didn’t. I was surprised to find out that people think about and want to have sex even when they have wrinkles and gray hair.

Yeah, I took a look at this article about how people get fired when residents have sex in nursing homes, and also at this one about people that allow and expect it to happen. Read more »

A new way to handle ‘badly behaved’ older adults

Tase them! This isn’t the first time a nursing home resident has been tased and it won’t be the last. It should cause alarm bells to be clanging in the hearts of everyone caring for an aging loved one. We aren’t given details in the report (I’m waiting for Paul Harvey to fill us in with “the rest of the story”), but it’s very disturbing to think that a professional caregiver felt it necessary to call in outside enforcement.

I’ve been in tough situations with residents. I recall Ann in a dementia care community I managed: she believed herself to be a nurse by day, thought she needed to free fellow residents by night. When our dementia care community’s water pipes sprung a leak and we needed to evacuate residents just after bedtime, Ann seized the opportunity. Read more »

Is Assisted Living a Dangerous Place to Live?

The PBS Frontline special “Life and Death in Assisted Living” has sparked a great deal of chatter on social media. Assisted living (AL) is not regulated like nursing home care (or SNF-skilled nursing facility), but do we want it to be? Regulations tend to put the kibosh on creative offerings.

One of the initial definitions of assisted living was “living with risk.” When I first worked in the industry, folders replaced charts; aides didn’t wear uniforms; and med carts never entered the dining room. Buildings were designed to look like country mansions with grand staircases (that residents were discouraged from using).

Assisted living in 1996 was designed to provide some assistance in a home-like setting. As people have aged in place, AL has become a less-regulated version of a nursing home. While the industry markets these communities as homes, they refer to them as facilities. Who wants to live in a facility?

As for staff being overworked, underpaid, and under-trained, I agree. Years ago my partner and I started our company Age In Motion, Inc. We designed programs to address the issue of assisted living staff that was (still is) underpaid, undervalued, and under-trained. We created a staff training that not only motivated the staff and reminded them of their importance, but also taught them about normal aging, diseases that cause dementia, family dynamics, and activities that engage individuals and groups.

I thought we’d be in demand … that everyone, especially senior housing, would want this training. Sadly, most choose to ignore aging until it happens to someone they love, then the cramming begins. But where do you get the information?

This is why I do what I do and have done what I’ve done. Let’s talk about this thing called aging, engage in understanding what happens to us as we grow older — the ups, the downs, the good, the bad. This is the package. This is why I started The Unexpected Caregiver radio show four years ago and have a mission to syndicate it throughout the US and world.

The conversation is long overdue, but it is not distasteful to have. Aging and taking care of each other is not distasteful. And if we learn about aging, plan for our aging years, research our options, we will have a better understanding of what is to come.

No, assisted living is not dangerous. It is as misunderstood as the journey of aging.

Songs in my head

I think in song lyrics. I open my laptop and the words to a Bahamian lullaby pop out of my mouth: “All my files Lord, so-oon be open.” This just happens with me. And yet if you sit beside me in church when I have the words of a hymn in front of me, I’ll sing different words. My good friend Emily chuckles and says, “How can you get the notes so right and the words so wrong?”

Music has always been a part of my life. It’s something I can share during a presentation or at the bedside of a Hospice patient. When I worked in a dementia care community, I used song to greet the residents. Music can be used to shift moods, to acknowledge sadness, to release anger, to embrace happiness. As a family caregiver, you can use music to connect with your parents. Instead of listening to “their” music or “your music,” take turns. My dad and I dance to Madonna and Frankie Valli. Instead of telling your kids or grandkids to “turn off that noise,” engage with them. What is it about the beat, the words, the band that they enjoy?

IMG_2513More than just enjoyment, music can also be used to help someone who has suffered a stroke to relearn how to speak, a person with Parkinson’s disease to improve their posture and reduce pain, or a patient in Hospice to leave a song legacy. I welcomed back Melissa Hirokawa, M.M. MT-BC, Neurologic Music Therapy Fellow, on “The Unexpected Caregiver Radio Show,” where we focused on using music in stroke therapy. Melissa clearly loves her job and shares delightful stories of how her work has improved the lives of those elders to whom she gives care. Our previous interview focused on how music therapy supports the family caregiver. Both interviews are upbeat and insightful.

Whether you engage a music therapist, use songs to connect with your loved one, or like me, think in songs, let music support your on your caregiving journey.

Woman Dies While Nurse Calls 911

The lead sentence in a California online news source read: “A nurse’s refusal to give CPR to a dying 87-year-old woman at a California independent-living home despite desperate pleas from a 911 dispatcher has prompted outrage and spawned a criminal investigation.”

This is a tragedy. We need to dig deeper, however, to understand how this can happen. Did the independent living community have a medical arrangement with her? Read more »

A Look at Health Care Costs

Kari Berit interviews Michele Kimbal of MN AARP

Kari Berit interviews Michele Kimball of AARP

My insurance agent contacted me: Rates are going up again on my personal health insurance. I either accept the higher rate or reapply.

I don’t understand all the changes that are on the horizon for health care, and that’s one reason I interviewed Michele Kimball of MN AARP on The Unexpected Caregiver radio show. Michele clearly describes just a few of the benefits to family caregivers and their loved ones. In this time of sound-bite media, this is a refreshing interview on the Affordable Care Act.

And speaking of health care prices, my favorite assisted living nurse was on my radio show last Thursday, talking about how the cost of care can change with varying service levels in assisted living. Nurse Tina provides such clear examples and sound advice. Watch for a compilation of my Nurse Tina shows coming soon.

My Sister Has Huntington’s Disease

Kari with her sister AnneMy 51-year-old sister has HD—Huntington’s disease. She was willing to be on The Unexpected Caregiver radio show, but was nervous—not about telling her story, but about having a microphone in front of her! Anne has a large personality, but doesn’t like being singled out.

HD is a degenerative brain disease. It is unkind and inherited. Our mother had it. She inherited it from her father. It does not skip generations and does not favor one sex over the other. Anne has four children. They are at risk for HD. If none of her kids have the defective gene, then the disease stops with that generation and is finished in that family. That is our prayer. Read more »