Tag Archives: Health Care Directive

It’s never too early, but it can suddenly become too late

After a trip to Minnesota to see family and friends in need of care, I am reminded of the importance of telling others what you want. It’s hard to imagine NOT being able to speak for oneself, but I’ve witnessed a sister and a friend struggle to do just that.

This blog, albeit a bit longer than normal, appeared as an article in Girlfriend’s Magazine earlier this year. Read, enjoy, and then put your wishes to paper:

I had an exchange student from Norway in 2010-11. Henrik and I hit it off immediately. When he asked why I had chosen to have an exchange student, I jokingly replied, “I’m grooming you to take care of me if that day comes.”

Of course I was kidding with Henrik, but sharing my wishes has never been a joke. My Health Care Directive provides a good, basic overview, but like an excellent meal, I want my care team to pay special attention to ingredients that are unique to my tastes. If you find it challenging to write down your potential needs, may I recommend writing a letter? I think of letter writing as creating a recipe book for my care. The following is just one example of what such a letter can contain.

Dear Henrik,

You asked that I let you know how to take care of your “host mamma,” because, after all, you will be one of my caregivers. (You do remember that we made a pinky-swear about this, right?) Ideally I will hold on to my faculties and you won’t need any of the information contained in these letters. But if the day comes when I need you to care for me, these letters will provide insight. (Of course I expect you to train the others on my care team.)

We had tons of fun when you lived with me. We sailed into the wee hours and slept until 10 on Saturdays. You know I love active, full days, but I’ve also grown to cherish my quieter days. Some days will even be sad. Let me have those times, mixed with spells of uproarious laughter and spontaneous kitchen dancing. I like to process my feeling and alone time is important. However, if I’m alone for more than three days, it’s time to get me out (or bring people in).

I may complain when you tell me you’re taking me out, but please persist. If I remain disconnected from others for too long, my depression can easily pull me into a very dark place. Take me to a coffee shop. We can talk, read, or simply people watch. Take me to a bookstore, even if you don’t think I can read. Let me wonder and sit amongst the books. Take me to a movie or on a drive with a stop for ice cream and people watching.

If you invite friends for dinner, don’t get so caught up in the conversation and forget about me. I could easily get lost in the rapid-fire conversations if I have dementia. Include me by simply putting your arm around me. Nod and say, “Isn’t that right, Kari.” It will be your job to help me feel connected, even if I’m not contributing. Don’t worry if I can no longer form sentences. If I’m smiling, then I’m enjoying myself.

This letter writing is a two-way street, Henrik. If you have specific questions or wonder about a specific ingredient in my overall care, please ask. And remember, you’re not to do this all by yourself. You must also take care of you.

Love you!

Your host mamma

It’s time to have The Conversation with Mom and Dad

It was probably one of the most important and treasured conversations I’ve had with my in-laws. Granted, my husband’s parents are pretty special people. They read three newspapers a day, several books each month and discuss world events. They tackle health issues head on and look for solutions and support, rather than dwell on any setbacks.

On our last visit, they sat down with my husband, John, and me, and read aloud each of the points in their Advanced Healthcare Directive. Both John and I have worked in senior housing and have professional experience helping families come to grips with end of life care. I’ve filled out my own health care directive, talked about end of life on my radio show and during presentations, and have been a part of my own dad’s planning process. But we’re older now and our parents are older. It is highly likely that any of our four parents will eventually utilize a health care directive.

two people talkingI can’t lie: It’s not necessarily an easy process, but it is profoundly rewarding. If we hadn’t read through my in-laws wishes, we would have missed several crucial details. Among these is that they do not want Hospice to come into their home. They would prefer to move into a Hospice facility. John and I thought for sure they would want to die in their home, but they have their reasons for not wanting this and now their wishes are quite clear. We know very specifically what care they want in the later stages of their lives.

Yes, we’re talking about end of life when filling out an advanced healthcare directive. But we’re also looking at how we want to be cared for while we’re still living. If you haven’t yet broached the topic with your parents, give it a try. Use my example. If they don’t want to discuss end of life issues, let it go, but try again another day. And while you’re waiting, fill out your own directive. You may just gain rich insights into how you really want to live.

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

Dying Gone Haywire

“Ask for help” and “Who’s on your team?” are two common phrases you’ll hear me say when it comes to caregiving, aging, or heck, just living. Taking my own advice, I called on my talented brother, Dak Gustal, who will offer fresh, humorous perspectives as an occasional guest blogger here at The Unexpected Caregiver. Please share this and other blogs. 

SteveBy Dak Gustal

The original story is called Woman Headed to Trial for Aiding Father’s Suicide.

That’s not that interesting.

Then it became: Boomers beware when caring for dying parents.
Now you got me.

This is my headline: Boomers! Bam! Pow! Yeah! Beware! Scary Parent! Run!
Perfect.

This has all the elements of a great story. I think there’s redemption coming. Read more »

Time to Reboot

I’m worn out. I’ve had it. I don’t know where to turn.

I have heard these three statements in various forms quite a bit lately. With my private caregiver coaching clients, my friends, my family. I get it. Being tired after a good workout or a long day of work is one thing. Being worn down from day after day of not getting ahead, not accomplishing your to-do list (let alone your mother’s or husband’s), or feeling defeated from all you’re trying to be for everyone else…that is a whole other beast.

And the voices in your head! How do you turn them off? The non-stop judging of how little or well you’re doing, the old tapes that seem to be stuck on repeat…Those voices seem to have moved in permanently and do not listen to you screaming “Stop!”

Whether you’re a caregiver or not, my interview with Robin Collins on “The Unexpected Caregiver Radio Show” will provide you with down-to-earth, accessible advice for how to reboot your core thinking. Her wisdom resonates to the heart of your being. If you haven’t yet listened, I offer you this gift from Robin. And here’s how you can get in touch with her: lovetothe5thpower@gmail.com

Robin Collins offers that reboot we all need. And I am so grateful.

Giving care when you’re worlds apart

If family caregiving wasn’t hard enough, let’s throw distance into the mix. 7 million people consider themselves long-distance caregivers in the U.S. Trying to figure out what’s going on with Mom and Dad when they live on one coast and you the other can sometimes seem an impossible task. Whether to travel or not depends on what kind of relationship you have with your parents. Read more »

Your Legacy May Live on in Cyber Space!

The PBS News Hour covered a story on our digital real estate. Do you know how many people die every day in the Facebook world? According to the News Hour story, three. That’s a lot of ghosts haunting the social media world of Facebook.

Planning for a death is not a popular event, but it is a rare and precious gift to your survivors. Read more »

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 »