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Two Words Every Caregiver Should Know About

July 3, 2018

Photo: Green folder with Crossroads Hospice & Palliative Care sticker on it

Palliative Care.

 

I first found out about palliative care back when Calvin was getting ready to go home from the hospital for the last time. Originally, the doctor suggested ‘Palliative Care’ for him upon discharge. I had never heard of such a thing before, so naturally, like you, I had some questions.

 

What is Palliative Care? 

Anyone who is nearing the end of their life, that is they have a a chronic illness or in need of pain and symptom management, is eligible for palliative care support services. Palliative care is a service that is offered by health care agencies, many of which are also hospice providers. It is often covered both by Medicare and Medicaid, as well as private insurance.

The goal of palliative care is to allow people with a life-threatening illness earlier access to the same type of care that hospice patients receive. Even though they have the same goals of helping people have quality of life and live comfortably, palliative care is different from hospice.

Palliative care goes with you wherever you go, so it can be provided in a hospital, at home, in assisted living or a long-term care facility.

When you start receiving palliative care, you get a nurse practitioner and a social worker. The nurse practitioner comes out and checks on your loved one each month (or more as needed). If you are concerned about your loved one, but not sure if they need medical care, they can help you triage what’s going on and even come out and check on them. They can order any tests or labs that need to be done (This really excited me considering the increased risks of UTIs for older people).

You are assigned a social worker who can help you navigate supports for your loved one. They can help you discuss difficult decisions and think through end of life planning. If you don’t have a DNR established, they can help you take care of that as well. The social worker my grandma has literally just offered to come over and sit down and call up her long term care insurance company with me. How cool is that?!

These two people work with a palliative care physician and your existing health care providers to make sure your loved one is receiving the very best care. It’s like your very own care coordination team!

 

Who can receive Palliative Care?

Ultimately, Calvin went home with hospice, but I found out after my grandma’s last hospitalization that she qualified for Palliative Care. My ears perked right up, because I knew exactly what they meant!

If your loved one has a condition that causes long-term pain and discomfort and/or for a chronic illness  that causes periodic symptoms, like:

  • Cancer
  • Heart Disease/CHF
  • Respiratory Disease/COPD
  • Renal Disease/Failure
  • HIV/AIDS
  • Chronic Liver Disease
  • Multiple Sclerosis (MS)
  • Alzheimer’s Disease
  • Stroke (CVA)
  • Amyotrophic Lateral Sclerosis (ALS)

You may want to consider starting palliative care. Your person does not have to be dying or shut-in, they simply have to be dealing with symptoms of a chronic condition. Since my grandma has Alzheimer’s, she qualifies for palliative care.

 

What’s the difference between palliative and hospice care? 

If you start researching palliative care providers in your area, you might find that a number of them are primarily hospice providers. Hospice providers are one of the primary providers of palliative care services in the country. The idea is that by offering both palliative care and hospice care, seniors and families will have a seamless continuum of care over the course of a serious illness.  The goal of palliative care is to allow people with a life-threatening illness earlier access to the same type of care that hospice patients receive. Even though they have the same goals of helping people who are aging or dealing with illness live comfortably, palliative care is different from hospice. Palliative care is about maintaining a quality of life, where hospice care is about helping people through the end of life process.

If you haven’t looked into hospice, either, you totally need to! It is an essential support for any caregiver to know about!

Palliative care is already a lifesaver for us! I recently called them freaking out about my grandma’s stoma output, and they helped me triage the issue and think through it rationally before rushing her to the emergency room.

If you think your loved one is eligible for palliative care, the first step is talking with your loved one’s primary care physician. They can write a referral for palliative care for you. They can also usually tell you what providers are in your area. You then choose a provider that will accept your caree’s health care coverage and get the ball rolling with them.

Want to learn more about palliative care? Check out this great resource, Start the Conversation by visiting http://www.starttheconversationvt.org/palliative-care-hospice

 

(PS – If the phrase “end of life” kinda scares you, you might have a few issues to work out – Trust me, I was there, too. If you want, we can talk about it. Contact me!)

· Managing Healthcare, Quality of Life, Uncategorized

The Dementia Handbook: How to Provide Dementia Care at Home

June 19, 2018

Graphic reads: "People do not stop experiencing things just because they stop remembering them." and shows the cover of The Dementia Handbook.

This blog post/email contains affiliate and referral links which may reward me in the event of a subscription or sale. I use these funds to feed my cats. Thanks for the cat food.

 

Graphic reads: "People do not stop experiencing things just because they stop remembering them." and shows the cover of The Dementia Handbook.I always say I find everything good on Twitter. Over the past few months, The Dawn Method showed up in my cross hairs.

Last week, on a whim, I saw a post on Twitter – and I decided to buy their book on Kindle, The Dementia Handbook: How to Provide Dementia Care at Home, written by Judy Cornish.

This book is a fast read. I read it in just a little over an hour from cover to cover (which I did over the span of two sittings).

Dementia is a broad umbrella that includes a number of diseases, including Alzheimer’s. Alzheimer’s is a type of dementia that causes problems with memory, thinking and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks. 

To learn more about Alzheimer’s you can visit https://alzfdn.org/education-resource-center/

To begin, Judy lays out the basic facts about dementia. If you don’t currently know someone living with dementia, the chances are high that fairly soon, someone you know will be affected by it. Contrary to popular belief, all people aren’t able to be cared for in a residential facility. Nor is that is necessarily ‘best practice.’ So to survive dementia, we have to learn how it affects people and how we can adapt to help them live their best life.

Judy explains how the dementia brain works and the changes that take place when someone is affected by dementia. She covers what people lose (memory, skills), but she also underlines what they keep (the ability to enjoy beauty and live in the moment).

Judy gives a broad overview of what person-centered care for a person with dementia looks like. She shares the key elements of care that can enhance what people keep when their brains and bodies are changing. Then she goes on to give more specific strategies for helping an aging loved one with dementia age in place at home.

She covers a ton of topics, from helping with daily activities and recreation to ensuring safety and feelings of security. She offers advice and tips for everyday life: grocery shopping, finding misplaced items, and communicating with other people.

At the end, Judy shares the rationale for caring for loved ones with a form of dementia at home. I rejoiced when I got to this section. Judy confirmed and validated the values and beliefs that I have come to embrace over the years. She challenges the commonly held misconceptions around elder care in our country. It’s a fact. The current system of long term care is not practical. It is out of reach for many families. But even more than that, supporting our loved ones and aging community members is the compassionate thing to do. After a life of giving back to our communities and taking care of us, it’s time we honor our elders’ choices and rights.

This book helped me realize I was on the right track. It gave me some very smart strategies to act on. More importantly, it helped me understand some of the things that I have been doing that weren’t necessarily therapeutic for either of us.

I’m so glad I found this book. I will be telling everyone about it. Even as I read it, I found myself screen-shotting pages to share with my grandma’s ‘helpers’ to help them grasp my vision for supporting my grandma and reinforce things I’ve been saying all along.

Who should read this book? Anyone who

  • has a loved one who is getting older,
  • works in the health care field,
  • family caregivers affected by dementia (or not).

The tips and strategies in this book can be used to support anyone who is aging or has a disability.

Get your copy of The Dementia Handbook: How to Provide Dementia Care at Home on Amazon. I bought the Kindle version, but it is also available as a paperback.

 

Follow The Dawn Method on Twitter at @thedawnmethod. Visit them online at thedawnmethod.com

· Keeping Grandma Safe, Quality of Life, Uncategorized

Life Group Gives New Meaning to TGIF (or how Rachel gets ‘respite’)

February 16, 2018

Photo: zoomed in on Friday, handwritten text says, 'Gma Life Group'

‘Respite,’ or the opportunity to take breaks from caregiving, whether formal or informal, can be hard to come by for family caregivers.

When I first started taking care of my grandma, my life looked like this: [Read more…]

· Caregiving Like a Boss, Quality of Life

Dancing with the Stars at Grandma’s House

October 16, 2017

My grandma loooooooves TV. Her life kind of revolves around the TV. Even before she got sick, she watched the same soap operas and game shows faithfully for as long as I can remember. She is meticulous about recording shows she wants to watch and could spend all day watching the television. And I hate TV.

One of her favorite shows is Dancing with the Stars. She says she likes it because she used to dance a lot when she was younger with my grandpa.

Sitting for such a long period of time not doing anything is always uncomfortable for me, so i would find myself leaving before the end of the show. A few weeks into this season, I had an idea. I ran by Hobby Lobby and picked up some popsicle sticks and some fancy papers and we made our own judges paddles. Even the process of making the paddles was fun.

When the judges reveal their scores, we show our scores. We laugh and have a good time comparing notes with each other and the judges. I have been writing the scores down, but this week I made a spreadsheet so I can easily sort the scores low to high to help us vote. At the end of each show, we each vote on our phones.

Doing this with Grandma has definitely made watching Dancing with the Stars a more enjoyable experience for both of us. It’s something I’m starting to look forward to each week when Monday rolls around.

· Quality of Life

Decking Grandma’s halls for Halloween

September 30, 2017

I have always liked to add some holiday flair to my house when there is a special day coming up, and I do the same thing with Grandma.

Today, we hit up the Dollar Tree to get her living room ready for Halloween. It didn’t cost very much, and it got her out of the house moving around.

Each time we do this, my hope is it helps her remember what time of year it is and gives her something to look forward to. We have a nice little stock of holiday decorations growing in the garage for when the next one rolls around.

· Quality of Life

#WordlessWednesday #takingcareofgrandma

August 16, 2017

Found this waiting for me after a two day business trip followed by a two day trip out of town for a funeral.

Secured with her winnings from going to bingo with Karen

· Quality of Life

Rachel Clears the Air on Nursing Homes

June 22, 2017

Photo: Grandma looks at a wall size bird cage in a skilled nursing facility I thought she'd never leave

I may have made a few comments about nursing homes at this point that may have given people the impression that I am against nursing homes.

 

First, let’s make sure we are all on the same page about nursing homes and what they do/how they work. Nursing homes go by many names. Long term care facilities. Assisted Living Facilities.  Intermediate Care Facilities. Skilled Nursing Facilities. Convalescent homes. Old folks’ homes.

 

I want you to read me loud and clear: nursing homes are a great living option for people who choose to live in one when they get older and need support. Some people take comfort in the predictability of facilities like these. Others, often amidst a life stage where they have lost many of those close to them, might appreciate having lots of people closeby to call on for companionship.

 

I don’t know too many people who have chosen to live a nursing home, however. Sometimes, people are forced to move into a nursing home against their will by the legal system (often by a guardian or public administrator). Many people who end up in nursing homes do so because they lack the social support needed to stay in their own home or an independent living situation, or their need for assistance due to cognitive decline or chronic conditions that come about due to the aging process has become so great that those close to them can no longer keep them healthy and/or safe.

 

I think we all can agree that people who are aging should live in environments that meet their needs for increasing levels of support. However, I have noticed, especially among the white middle class, there is a common misconception that as soon as people get old and need help, they should be moved into a nursing home.

 

A lot of people have been convinced that nursing homes can keep people safe. A major reason people end up in nursing homes is because they are a fall risk. Putting your loved one in a home won’t keep them from falling. People fall in nursing homes all the time. Nursing homes don’t provide the nurturing, caring environments they show in senior living magazines. Would you rather have a bracelet on your body at home where you are comfortable, or pray you’re close enough to the call light when you’re cooped up in your little room, where you spend 75% of your day?

 

Just flip on the TV and you’ll hear reports of seniors in nursing homes who have become victims of theft, gross negligence, and terrible abuse on the news. This infographic displays research that takes a closer look at this topic. I have personally witnessed some real life horror stories in one of the places my grandma was in temporarily. People get tossed around and roughhoused, My own grandmother was allowed to sit in her own urine for hours on end while she was in a facility for rehab.

 

Depending on the type of facility, the minimum ratio for personnel in long term care facilities in Missouri can be anywhere from 1:10 to 1:40, and this includes all staff that work in the facility.1,2 Just how are those ratios supposed to keep people safe? How is it that that few people are expected to be able to provide quality care to the people in our country who deserve the most respect?

Are all nursing homes bad? Absolutely not. Unfortunately they all share many common issues: high turnover, workforce shortages, lack of qualified personnel, limited resources, rising healthcare costs, and low family involvement and engagement. And humans make mistakes. So even at some of the best places, nothing will be perfect.

 

Even greater than your loved one’s chances of being abused are the chances of them developing depression living in a nursing home. The rate of depression of people living in nursing homes is estimated to be at 49%.3 Half of all people living in nursing homes suffer from depression. What does that tell you?

 

It is easy for me to see how a person can be depressed after moving into a nursing home.

 

Control & Choice

When people move into nursing homes, they lose the control and choices we all have in our everyday lives. It is unavoidable, simply a fact of congregate living. There is no way to allow everyone the individual freedoms of choosing what and when they eat, who they live with, where they go. After a lifetime of experiences, you get used to doing things on your own way, and that just isn’t possible in a nursing home.

 

“Out of sight, out of mind”

Living in a nursing home isolates people. This is also a fact. Simply by residing in a separate structure, they are cut off from their family and friends. We all get busy. If things aren’t right in our face, it is easy to push them to the back of our minds. Unfortunately, the same thing happens with our loved ones, and they are left to sit in a small room glued to the TV, staring out the window, or worse, the walls, unless they want to participate in activities they may not enjoy with people they may not necessarily like or want to get to know.

 

Poverty

A reality of residential long term care is poverty. The average nursing home comes with a price tag of $100k a year (for a private room), and Medicare does not cover long term care. Imagine a person who has saved their hard earned wages all of their lives. When they require a residential level of care, they end up having to spend all of their earnings on their care, unless they were fortunate enough to be able to afford long term care insurance. Once they have spent up all of their money, if they do not have family members who can contribute to their support financially, they end up going on Medicaid. They might lose their house and any other valuable items through Medicaid clawback.

 

It is sad to see what we do to the people who gave us life and took care of us. It is clear that we all have a lot of work to do when it comes to support our family members to have a good life as they get older.

 

Please do not take this as a condemnation if your loved one lives in a nursing home. You gotta do what you gotta do. What works for my grandma and I might not work for you and your folks.

 

If your loved one is already in a nursing home–

    1. Ask them if that is what they want (if is possible for them to decide). If they want to make a change, discuss options for relocating.
    2. Don’t feel guilty or shameful. There is no one size fits all solution for every family, and everybody’s situation is different. Sometimes nursing homes are the only viable option.
    3. Stay involved in your loved one’s life and visit them frequently. This is especially important at first, but essential for the duration of their time in a facility. Changing to a environment like that can be stressful. Even though many nursing homes have a busy activity schedule, it maybe hard to make new friends or have any interest, especially if you are having trouble with your health. More than anything, nursing homes can be pretty lonely places. It’s easy to feel forgotten. And being a visible part of that person’s life will show staff at the facility you have an eye on what’s going on.
    4. Maintain positive relationships with staff who take care of your loved ones. Honey catches more flies than vinegar. It will make your life a lot easier if the staff know you and like you and are willing to do things for you, and it might just enhance the quality of care your loved one gets. Nominate staff for awards or write commendation letters when they go above and beyond. Bring them treats if it is in your budget. Even something as simple as saying, “thank you” can go a long way.
    5. Educate yourself on your loved one’s rights and policies around long term services and supports so you can advocate for the best possible care for your loved one.  

 

When my grandma was having serious issues and the future as we knew it was looking bleak, some of the people in her life suggested that I consider putting her in a nursing home. I know that is not what she wants, so I had to figure out how to help her get home and be safe. Here is my advice for those that have gotten this suggestion or entertained the thought of moving a family member into a nursing home.

If you have been considering a nursing home for your loved one–

  1. Ask your loved one what they want for the future. Everyone has a vision of what their good life looks like. We have to be respectful of our elders’ wishes and do the best we can to honor them. Having a clear picture of what they want will help you make a plan. If a nursing home isn’t in their vision for a good life, then you might want to consider other options.
    I used the Charting the LifeCourse Life Trajectory Worksheet to figure out my grandma’s vision for a good life.
  2. Map out your loved one’s current supports. It’s best not to rely on only one source of support. You don’t have to do it all yourself. If you have more members in your family, everyone can share part of the load and take care of your loved one. If they cannot provide actual care, then they may be able to contribute financially so that you can provide support to your loved one to keep them at home. If you can visibly see what you have at your disposal to care for a loved one, you can also see where gaps might be and where you need to find resources to help you fill them in.
    In our case, it is just me and my grandma. She doesn’t have any other living family members and a few friends. So I had to pull in technology to help me keep an eye on her when I’m not with her. I used the Charting the LifeCourse: Integrated Supports Star Worksheet to list out all of the supports we could possibly tap into at some point if we need help.  
  3. Explore your options for technology that can help you keep your loved one safe at home.  
  4. Find out what resources are available to help aging individuals and family caregivers in your community. Look up your local Area Agency on Aging. That is a great place to start finding information about what is available to your family locally. You can find yours at www.n4a.org.
  5. Realize that your loved one is not the only one who needs support. To be a good caregiver, you also need support. Pull in people you can trust to confide in, connect with other caregivers, and find reliable sources of information about providing care, as well as the policies that affect aging Americans and family caregivers. And most importantly, make sure and take time to take care of yourself while you are caring for your loved one.
  6. Prepare to have difficult conversations. As time goes on, you may have to implement safeguards that may feel limiting to your family member.  It may not be possible for your loved one to stay at home forever. You have to respect your loved one’s lifetime of knowledge and experience and come to agreements about what happens when….
  7. If you decide that a nursing home is the best option for your loved one, do your research. If a nursing home is in your crosshairs, visit each one (more than once, at different times of day, just like you would if you were looking at a house). Ask around or do a basic web search to see if anyone has anything to say about the facilities you are looking at.

 

I hope that this post challenged your thinking about nursing homes and helped you consider some aspects of long term care that you hadn’t considered before. Most of all, I hope that you can see that supporting a loved one at home, if that is their desire, is possible if you put in the energy and time that they are worth to honor their wishes. If you’d like to talk to someone who’s been there, feel free to reach out and get in touch with me. I’d love to hear your story.

 

Sources:

  1. Missouri Code of State Regulations, Rules of Department of Health and Senior Services Division 30—Division of Regulation and Licensure Chapter 86—Residential Care Facilities and Assisted Living Facilities. http://s1.sos.mo.gov/cmsimages/adrules/csr/current/19csr/19c30-86.pdf
  2. Missouri Code of State Regulations, Rules of Department of Health and Senior Services Division 30—Division of Regulation and Licensure Chapter 85—Intermediate Care and Skilled Nursing Facility. http://s1.sos.mo.gov/cmsimages/adrules/csr/current/19csr/19c30-85.pdf
  3. QuickStats: Percentage of Users* of Long-Term Care Services with a Diagnosis of Depression,† by Provider Type — National Study of Long-Term Care Providers, United States, 2011 and 2012. Morbidity and Mortality Weekly Report (MMWR). Centers for Disease Control and Prevention. U.S. Department of Health & Human Services. https://www.cdc.gov/mmwr/preview/mmwrhtml/mm6304a7.htm

· Quality of Life

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