TakingCareofGrandma.com

The H-Word (or Why I Haven’t told the Whole World my grandma’s on Hospice)

Hospice.

The utterance of “hospice” typically unleashes a wave of alarms that pulses through a family’s social network at the speed of sound. 

Being one that works hard to avoid knee-jerk reactions and values privacy,  I have held off on informing everyone that my grandma is now on hospice.

Until now.

That’s because the more I’ve become entrenched in this caregiving journey, I have come to realize that the vast majority of people who are familiar with this word mistakenly associate it with providing comfort care to a person who is in their final days and hours. 

Yes, it’s true that society has the who, what, when, where, and how of hospice all f*#)ed up.

I’m here to set the record straight on what hospice is and what you can expect. 

Who:

Hospice is not just for the patient. Hospice is for the entire network of people that is supporting the patient. That includes not only their close family members and loved ones that are caring for them, but also any paid caregivers. Yes, hospice provides comfort and support to a person who is experiencing a terminal illness or close to the end of life. Hospice also provides relief, counseling, and help with navigating this common rite of passage to those who are close to that person. 

Where & What: 

Repeat after me: Hospice is not a place.

Okay, hospice is not necessarily a place, although there are hospice homes that people may choose if it is appropriate for their situation.

Hospice is a *service* comes to you wherever you are living. If your loved one is in their own home, hospice goes there. If your loved one is in a facility, it enhances the care they already receive. 

Hospice is a service and a philosophy. The philosophy of hospice is providing comfort and making the transition to the next chapter of life easier for everyone involved in a care team.

Hospice is like a hug at the beginning of the end, saying, “We are here for you.”

The hospice we know as a service provides wrap-around support to patients and their families. This includes a care team that offers support with personal care, therapies and treatments, monitoring your loved one’s condition, securing and delivering equipment and supplies, and counseling and emotional support to wade through the grief.

The hospice care team can include:

  • A nurse or nurse case manager
  • A bath aide
  • A social worker
  • A chaplain

Hospice care is covered by Medicare and Medicaid. 
(Learn the specifics straight from the horses mouth.
Medicare & Hospice https://www.medicare.gov/coverage/hospice-care 
Medicaid & Hospice https://www.medicaid.gov/medicaid/benefits/hospice-benefits/index.html) 

When you sign up for hospice, you accept palliative (that is, comfort) care and waive coverage on treatments aimed at curing illness and prolonging life.

Perhaps the most important thing you should know about hospice is that calling in hospice does not mean you are waving the white flag. 

Calling in hospice is smart. 

It means you realize it’s quality over quantity.

It means you know you can’t do it alone (nobody can) and you want to help your loved one be as comfortable as possible as they experience illness and end of life. 

When: 

Hospice is normally called in when a person is expected to have six months or less to live. Just because you found out that hospice may be appropriate or you have begun hospice, it doesn’t mean your loved one will die this week, this month, or even this year.

People sometimes get better and then don’t need hospice. They may hop on and off hospice for many years. 

Nobody has a crystal ball that can tell you when the right time for hospice is. The best thing you can do is learn as much as you can about it, so when you have even the slightest inkling that you might be ready for it, you can make the call.

How: 

You or your loved one can initiate hospice yourselves. Your doctor has to sign off on it, but your hospice provider can normally help with all of that. You can find a hospice provider by searching on the web or in the phone book, and if your loved one is in the hospital, the social worker can help you explore the providers in your area

I have found asking your friends to be the most helpful approach. Chances are, you know a few people who have been through this before. (And it just might work out that you end up finding someone who can help guide and support you through the emotions and challenges that this season of life can bring.) 

First, your loved one is admitted. If this happens following a hospital discharge, they normally meet you within just a few hours of you being home.

Once you’ve been admitted, then you meet your care team. You might meet them one-by-one, or in pairs. Over the course of the first week, you will have met them all. The first time each of them visit, they will ask you a bunch of questions, take a look around your environment, and get to know your loved one, their condition, and their care needs. 

Once all of the logistics are out of the way, they begin visiting more regularly, normally 2-3 times a week. They will give you a number to call and call it the “new 9-1-1.” They will explain to you that you can call that number if you need anything at all.

If you only take one thing away from this post, store this one away in your memory banks: Hospice does not normally provide around the clock care off the bat.

Don’t assume that because a family has gone on hospice, they have the help they need.

5 Easy Ways to Help Family Caregivers who are Dealing with a Loved One on Hospice

This is the most important time to be helping a family through this experience. Don’t wait until the very end, when we typically start to feel like we are being smothered by all the people who want to help out, stop by, or say goodbye. 

As a person has significant declines and/or gets closer to death, hospice becomes more involved. When a person goes “on watch,” that is, death becomes imminent, hospice is usually on the scene 24/7 to provide support and help with care in the final hours. 

So, there you have it. That is hospice in a nutshell. 

My grandma is on hospice. 

Stay tuned.

Caregiving Survival Skill: Throttling your G.A.F. level

WARNING!

This post contains censored explicit language.

When you’re in the throes of caregiving, it is easy to become overwhelmed. With so much going on, it can be hard to stay positive. 

One way I’ve learned how to cope with all of the challenges that come with the complexity of providing care for a loved one is throttling my G.A.F level.

Your G.A.F. (Give a F@#$) level is simply the amount of energy you choose to exert on any given circumstance.

Too much and you’re at risk for an aneurysm. 

Too little and you’re bordering on narcissism. 

Just the right amount and it’s smooth sailing.

My story this time doesn’t have anything to do with Gma, although the majority of my practice in this skill comes from my experience with her. 

My dogs are not perfect and sometimes they pee on the carpet. As of late, we had worked out a rhythm.

Photo: Max (dog) pre-injury
Max, pre-injury

My dog, Max, recently went to the vet and almost died after an unexplained trauma to his right eye. They removed it. spent 10 days at the vet. 

1 night at home and the pee stains were back.

The old Rachel would be pissed about the carpet.. and then feel guilty she failed to let her dogs out.. and get stuck in a negative loop. 

The new Rachel turns her G.A.F level on this waaaaaaaay down. She realizes she simply has to step up her game and  let her dogs out more often. 

As far as the carpet goes… well, it was a lost cause a loooooong time ago. She will do her best to clean it up. That is what deposits are for. 

What really matters is my precious Max survived and he’s home and on the mend. And that is what I G.A.F. about.

If we succumb to the negative loops in our heads, pretty soon we find ourselves borrowing problems. We become immobilized by fear and anger. 

Silencing the negativity doesn’t work, either. Usually it means we are living in denial, ignoring reality altogether.

You have to find the sweet spot in the middle, where you not only remain rooted in reality, you also accept it for what it is. 

Being in control of your G.A.F. level is a critical skill in surviving caregiving. 

It means knowing how to pick your battles. Once you are able to fine tune your G.A.F. level, you are a pro at knowing when to wave the white flag, when to fall back, when to stand at ease, and when to go in, full metal jacket, showing your a$$. 

Today, as you embark on your journey, I encourage you to seize power over the negative loops in your head and confront your emotions. Get to the bottom of how you’re feeling, decide if there is anything that you can do about it in the moment, and find a way to get back in the middle.

It doesn’t feel good to guess.

Two words that could save you a lot of grief: Advanced directive. 

I’ll be honest. I didn’t even follow my own good advice. It wasn’t like I didn’t try, okay. I opened the door to the conversation and just left it hanging wide open.

Yes. Even though I’ve told you adamantly over and over again that you should talk to your loved ones about what their good (or at least ideal) end of life looks like, I didn’t do it.

Two weeks ago, my mom and a catastrophic hemorrhagic stroke. Her blood pressure rose above 250 systolic and her brain turned off.

The very next day she passed.

Monday morning, as I headed out to do my Home Delivered Meals route, I got a call from my mom’s boss telling me to go to the hospital.

She was taking a client to a doctor’s appointment. The doctor’s office saw the signs of the stroke and called 9-1-1. By the time I got to the hospital, her brain had started bleeding.

Almost immediately after the stroke, we were advised to consider hospice. After my experience with Calvin, I knew just exactly what this meant.

All of a sudden, Mom’s life was in *our* hands. Me and my stepdad. 

Did she want to die?

Well, my mom did say everyday that she didn’t want to live with the terrible arthritic pain she suffered from. 

Still, though, she got up everyday and went to work, muddling through despite the pain, desperate not to let it defeat her. Hell, a box of clothes from Torrid showed up the next day. 

I don’t believe my mom wanted to die. 

But would she want to live?

We had what the doctors and scans told us. The stroke caused so much damage to her brain, they said if she survived (and those chances were even small) she would never regain the use of her right side or be able to use or understand language ever again. 

Meanwhile, her brain was still bleeding, and now affecting the other side of her brain, which regulates our natural organ function. 

They wanted to know what we wanted to do. We decided to give my mom a little time to rally if she would, and then make a choice. 

Once my stepdad went home the first day to rest and I saw that she was steadily declining, I asked the key question: Was my mom ever going to wake up again?

All signs pointed to no.

I knew my mom wasn’t in there anymore. 

In the morning, we made the decision to remove her life support and provide comfort care. 

She passed within 20 minutes of them taking out the air tube.

I’m telling you all of this because in the event of a catastrophe such as this, it does not feel good to be guessing.

In a situation like this, you can’t win for losing. 

So here I am, once again, telling- no, BEGGING YOU– to have this conversation as soon as you can with the people you love most in your life. 

The Center For Practical Bioethics created an amazing resource, the Caring Conversations® Workbook, especially for us. The workbook can guide you, your family and your friends through the process of advance care planning. Please take a look at it, print it out, fill it out for yourself and those you love. The link is https://www.practicalbioethics.org/resources/caring-conversations.html 

You have your in. You know me (somehow). Please feel free to use my story as your door opener to this conversation. Simply say something like, 

“You know, I know this isn’t easy to talk about… but a friend of mine recently lost her mom very suddenly. I can’t imagine losing you, and I want to make sure I know what you would want in case something ever happened to you.

Do it as quickly as you can. Do not wait or you could be left guessing like we were. 

It doesn’t feel good to guess.

P.S. While you’re talking about this, you might as well go ahead and lay out a will. Even if it is a measly word doc or a scribbled on a piece of paper, it is still better than nothing at all. 

DISCLAIMER

Disclaimer: I am not a legal expert. Your best bet is to consult with an attorney on issues such as these. 

My friend and caregiving legal expert, Cathy Sikorski, writes and shares information on this topic all the time. You can check her out at cathysikorski.com.

Whose responsibility is it, anyway?

Millions of Americans contribute unpaid labor in America every single day. 43.5 million to be exact.1 They system has a name for them, but many of them carry out their role unaware that there’s a name for it.

We’re talking about family caregivers.

Family caregivers are out here making the world go ‘round, taking care of their parents, spouses, adult children with disabilities, and other people they consider family. 

Oftentimes, family caregivers are overburdened and stressed out. Even if they had time to search for help, it’s hard to know where to begin if you don’t even know there’s a name for what you are doing. 

We hear the healthcare system saying it’s hard to help family caregivers because we don’t “self-identify.” I guess by “self-identifying,” they expect us to scream from the rooftops that they are helping an aging or disabled loved one in some capacity.

Even when healthcare and social service professionals in the see us in the room and are aware we help our loved ones in some capacity, often the only times our needs are addressed are is when something is seriously wrong. They will document that we are the family caregiver but never actually utter the word.

So, whose responsibility is it to identify and educate family caregivers?

The most common response I’ve heard is “the hospital social worker.” The social workers at hospitals certainly have a critical role in smoothing transitions from the hospital, whether they be to a patient’s home or a rehab facility, but with so many patients to cover, there’s no way they have the time to suggest basic resources. 

What if a person never gets sick enough to go to the hospital, but they still need assistance to make it through their day or manage their affairs? 

Some argue, then, that it would be the responsibility of primary care physicians to inform those caring for aging loved ones or people with disabilities of information and resources that can help them. Medical doctors do not study the same information during their coursework as social workers. Not only that, they are booked back to back to back. Their ability to look outside of the physiological aspects of health are somewhat limited. Our medical system does not allow them the time to look any deeper into what causes our health issues. What makes you think they have the time to become versed in meal delivery programs or how family caregivers can get respite? Unless you have a geriatric doctor, or one with personal caregiving experience, your chances of that are slim.

Why not the nurses? Well, because nurses are even busier than the doctors. They can’t help us figure out how we can get what we need to take care of our loved ones, because they have they’re busy taking care of entire hospital wings.

One of the number one answers we hear is for people to call their local Area Agencies on Aging or Aging & Disability Resource Centers. While Older Americans Act (OAA) funding is available to support family caregivers, according to AARP, of the funds that are “appropriated for family caregiver supports is a small fraction of the unpaid care they provide, less than 1/25th of 1 percent.”2 Here in Kansas City, the AAA’s portion of the funding for supporting family caregivers is 5% of a whopping $7 million budget for their older adult programs.3 Since many of them do not rely on OAA funding alone, most of them are constantly working to fundraise to continue offering services and supports, they have limited resources and staff to dedicate to the needs of family caregivers. And besides, let’s not forget their focus is older adults.

Senior Centers are a great place for family caregivers to get connected to information, that is, if they ever go inside. Senior centers can receive OAA funding to offer info and support to caregivers, but they are also understaffed and underfunded. In many cases, they just refer people back to the Area Agency on Aging.  

For many people in need, 2-1-1s are often their first call. 2-1-1 is a nationwide network of information and referral organizations. 2-1-1s connect millions people with resources to meet their basic needs every year. 2-1-1 is great, but only if a caller is able to articulate to the person on the other end of the phone what kind of help they need. 2-1-1 staff are trained to provide quick answers to immediate needs. They do not provide intensive family navigation. 

Even the federal government realized that it was so hard for people to navigate systems, they have been working on ways to make it easier for people to get the support they need. They launched the No Wrong Door Initiative, geared at helping states connect their multiple points of entry into the service system into a one-stop shop for long term services and supports (LTSS) for anyone who needs help.  According to ACL.gov, “NWD systems provide information and assistance not only to individuals needing either public or private resources, but also to professionals seeking assistance on behalf of their clients and to individuals planning for their future long-term care needs. NWD systems also serve as the entry point to publicly administered long-term supports, including those funded under Medicaid, the Older Americans Act, Veterans Health Administration, and state revenue programs.”4

So what about the No Wrong Door Agencies? Even though there is a movement to streamline the way LTSS are offered to families, most states do their own things. So even with federal support, processes for getting people what they need and getting everyone who helps us on the same page can be cumbersome. 

Why It’s not the System’s Responsibility

A significant number of people who are in need of long term services and supports from these systems aren’t even eligible for them in many cases. The majority of formal long term services and supports are tax-payer funded (whether they came out of your check or you donated to the cause). Many of them are based on financial need.

Massive numbers of families putter down the road of aging without ever interacting with the formal service system.

The problem with relying on the service system to give us answers is that the system is not equipped to troubleshoot caregiving. Caregiving is a complex human experience. Beyond navigating services, we need help to navigate the emotions of caring and support to build self care practices. We need different levels of support throughout our journeys. Sometimes we just need quick answers. Sometimes we need our hands held. 

Here’s the real question:

Like Denise Brown at Caregiving.com said, “What if we didn’t wait for individuals to say, “Hey, I’m a family caregiver!” and just assumed everyone is until they tell us they aren’t?”5

Why is it that we’re waiting for encounters with the service system to get them the help they need? Why are we counting on the system to actually be helpful, supportive, and proactive?

Why are we putting the burden of connecting families to the support they are looking for back on them? 

So whose responsibility Is it, anyway?

It is our collective responsibility, as family members, friends, neighbors, coworkers, members of faith communities, and participants in the marketplace, to make sure people know what they’re doing has value and that there’s a name for it. 

The community. That’s who we should be teaching about the common stages, turning points, emotions and needs that people caring for their loved ones have. 

That way, when we walk in their front door, and you see us caring for our mom, dad, grandma, uncle, brother, adult child… you can give us the secret code:

Family Caregiver.

After all, word-of-mouth is still the best referral source. 

How did you first find out you were a “family caregiver?” Who told you? How did it impact your caregiving experience? We’d love to hear your experience. Share it in the comments below.

Sources:

  1. https://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-in-the-united-states-2015-report-revised.pdf
  2. https://www.aarp.org/content/dam/aarp/ppi/2019/02/older-americans-act.pdf
  3. https://www.marc.org/About-MARC/finance/2019BudgetandWorkPlan.aspx
  4. https://acl.gov/programs/connecting-people-services/aging-and-disability-resource-centers-programno-wrong-door
  5. https://www.caregiving.com/2017/12/what-if-we-assume-everyone-is/

That Mom Feeling

For a while now, my grandma has referred to me as “Mom.”

Not directly TO me, but when she tells others about the person who is taking care of her, that’s what she says.

This week it clicked.

My grandma is constantly time traveling between the here and now and a chapter of her life where I hadn’t even been thought of yet.

I realized that often when she talks to me on the phone, she believes she is speaking with her mom.

The other night, Grandma went to bed and she said she needed to call her mom. I freaked out because I knew she was going to be calling me, and I still had to do the dishes. I helped her into bed and started washing the dishes. Sure enough, my phone started ringing in the other room. Thankfully she didn’t hear it. Once I was safely in my car, I called Grandma… and this time, I knew she thought she was talking to her mom. I had to laugh. It felt like I had just lived out a sitcom episode.

Last night, I talked to my grandma when she got home from her Bible Study and told her I’d see her in the morning. She called me back a little later to tell me about talking to Rachel and asked me to call and wake her up at 9:00. I couldn’t help but start giggling uncontrollably. The thought of playing the role of Jennie cracked me up.

So all this time, the lady who has been waking her up every morning and talking to her before she goes to bed… and setting up her pills and doing her shopping and everything else… is her mom.

Calling me “Mom” is her brain’s attempt to make sense of me and why I’m on the scene. She knows I take care of her, and she knows we’re very close.

In grandma’s dementia brain, that feeling is the one only Mom can give you.

I am very familiar with that feeling.

This week I very suddenly and unexpectedly lost my own mom.

She went to work on Monday and suffered a catastrophic hemorrhagic stroke. She passed on Tuesday.

Everyone has been asking me how I’m doing.

Remember as a kid when your mom told you to stay close at the grocery store?

I constantly and deliberately disobeyed my mom’s instructions (what can I say, I was a Strong-Willed Child).

Once when I was little I wandered off in the grocery store to go look at the toys. I couldn’t find my mom and I was so lost.

That’s how I feel right now.

As a woman, your mom is normally the first person you call in times of trouble.

This week, I finally understand why my grandma sees me as her mom. It is a bittersweet feeling.

Please pray with me for comfort, peace and strength as I brave ahead on this journey with my grandma while grieving my sweet mother. It’s not easy to hear the M word right now.

Everyday with Alzheimer’s is like the Wizard of Oz, Part II

Oh yes, Alzheimer’s is like The Wizard of Oz.

Our loved ones can spin off on relentless and ridiculous quests for lost items or out of longing for home.

http://gph.is/2cvVuc4

Everyday it can feel like we are venturing into a dream world. We’re just putting on a show.

Sometimes the show is for our carees. We orchestrate opportunities for stimulation and love and empowerment and carry out our days entertaining our loved ones’ trips down memory lane or voyeurs into la-la land… we are constantly performing.

We walk alongside Dorothy, morphing from one character to another, day in and day out.

I’ll get you my pretty…

Sometimes, when we don’t take care of ourselves we can get pretty ugly.

Sometimes we’re the villain when we have to make difficult choices for our loved ones’ well-being and safety.

We’ve all played the Wicked Witch a time or two.

Pay no attention to that man behind the curtain!!!!

As a dementia caregiver, we can be both feared and revered.

If we’re not careful, we end up running the show to the end that we are putting on a show. For the world, taking on what can feel like a whole city crying your name trying to prove we are great and powerful. We back ourselves into a curtained booth, hiding behind a scary mask. One false move and we are found out by a tiny dog with a gruesome underbite.

You had it in you all along…

When we are at our best, we are like Glenda the Good Witch. She is full of love and kindness, and her presence is calming. Glenda helps Dorothy find her way home, only giving her enough information needed at each point in her journey to complete her mission. She helps Dorothy realize she’s had the power she within herself all along.

“He’s really gentle – with gentle people, that is.“

http://gph.is/1847S5a

When Miss Murch comes for Toto after he snapped at her, Auntie Em lets her know how she feels about her. Sometimes as caregivers, we have to get in the face of those who are trying to take things away from the ones we love.

At the end of the movie, when she rejoins everyone in reality, their response is one of comfort and reassurance. Auntie Em calmly takes Dorothy’s hand, looks her in the eye,  and listens. Uncle Henry goes along with it, agreeing with her reality. Every dementia caregiver knows that our responses to the confusion should mirror that of Auntie Em and Uncle Henry. 

Dorothy: Doesn’t anyone believe me?

Uncle Henry: Of course we believe you.

We offer our love, even when we feel like we have no heart. We put on a brave face, even when we feel like the Cowardly Lion. Sometimes, we get stuck until someone comes along and bend the nail down. 

Oh, yes, Alzheimer’s is like The Wizard of Oz. 

Everyday with Alzheimer’s is like the Wizard of Oz 

Oh yes, the Wizard of Oz is just like Alzheimer’s.

The entire time, Dorothy is searching for her home. She. Just. Wants. To. Go. Home.

She wanders off to a far away land, one with wonder and beauty and moments of great joy.. an adventure fraught with horror and uncertainty.

Will Dorothy find what she was looking for?

How will Dorothy ever get home?

When she wakes up at the end of the movie, she is confused and disoriented.

Dorothy: No, Aunt Em — this was a real, truly live place. 
And I remember that some of it wasn’t very nice…
but most of it was beautiful. 
But just the same, all I kept saying to everybody was, I want to go home.
And they sent me home.

When those surrounding her deny the reality of her incredible technicolor journey… minimizing it to mere fantasy, Dorothy becomes increasingly troubled and insistent.

Dorothy: Doesn’t anyone believe me?

Uncle Henry: Of course we believe you.

Immediately she comes alive. She’s happy and knows she is safe and loved.

The only difference is in real life, the movie ends.
The credits scroll.
The music fades.

For the Alzheimer’s caregiver, The Wizard of Oz is the headliner day in and day out.

@takingcareofgrandma