Do You Know?: 5 Things I Learned From Going Off Hospice

About a year ago, Mom went on hospice care and I wrote about the assumptions people make when you say someone is in hospice. At that time, I knew Mom had time left with us, but I did not really think we had another year together. I am glad we have had so much time and it looks like we will continue to. However, this means that she has been taken off of hospice and I wanted to share with you 5 things I have learned from this experience.

Technically to qualify for hospice, the doctors have to evaluate you and believe that you have six months or less to live. You are reevaluated every three months in order to get "recertified" to remain on hospice. However, to put it bluntly, if you are not dying fast enough, you get taken off hospice. This means that even though your loved one is dying from their illness and you can not care for them alone, you now loose a lot of the help that allowed you to care for your loved one 24 hours a day.

1. Do you know all the things you loose from going off of hospice? You no longer have aids to give baths, a nurse on-call when emergencies arise, a nurse who checks for changes in the patient regularly. You loose all the supplies like the diapers, bed pads, wheelchair, mouth swabs, pillows, wipes, ointment, and more. This makes a big difference for two reasons, one is that some of these items are hard to find in the regular world, and second the cost for these items is outrageous and not covered by Medicare anymore once you go off of hospice.


2. Do you know how hard it is to find real adult diapers? Not Depends or something like that. Adult diapers that actually hold full amounts of liquid and solids, that open up like a diaper, and are made of materials that do not induce chafing and bed sores. It is really hard. Even the medical supply stores do not have the hospital grade undergarments needed for bed-bound people. It took weeks to find these for Mom.   


3. Do you know that equipment that was being paid for by Medicare through hospice does not stay with you when you go out of hospice, such as the Broda chair Mom had? This means in a few days time we had no chair for Mom to transfer to that was safe for her. A regular wheelchair is not appropriate for someone like Mom. The Broda chair Mom had was being paid for through hospice, it was now used, but we could not just buy that one for a discount or anything, we would have to buy a new Broda chair for $5,000. Dad found a used, slightly adjustable wheelchair for Mom like this one but we quickly found out that you can't just put anyone into any wheelchair, it needs to fit them properly. Skin breakdown and bed sores are very common for patients like Mom but leading up to this time she had only one little spot that looked irritated which we quickly fixed. As soon as we had to start putting Mom in wheelchairs that were not the right fit for her, she started getting skin breakdown. It took over a month of research and calling around to find out how we could actually get Mom a proper wheelchair through insurance because they are too expensive out of pocket. 


4. Do you know that most home health agencies do not employ caregivers who are able to help with things like bathing a patient or caregivers who know how to use equipment like a Hoyer lift or who have training in medical care at all? Hospice comes in and does this but once hospice leaves it is very hard to find enough replacement caregivers who can do more of the personal and medical care. 


5. Do you know that no matter who good your care coordination team is that the medical system is so convoluted it can be nearly impossible to figure out how to navigate the system to actually get what your loved one needs? My Dad is a doctor, we have friends in the medical field, we have Mom's doctors, we know many people who work in assisted living facilities and nursing homes, we even have Care Coordinators, and still it has been extremely difficult to get Mom what she needs. Hospice knows how to get through the hospice billing system to get supplies but once you are out of that, the same rules no longer apply and they can't advise you on how to get what you need. Nursing homes and living facilities get their supplies through other systems and can't advise on how to get help for someone living at home. None of the systems overlap and so even the best people have a hard time figuring out how to help.

Basically, the whole system is frustrating and it is very easy to get angry. Not only with the system but sometimes with the people helping you because you expect someone to know how to navigate the system. In reality though, our medical care system is so confusing that few people know how to work with it in any given special situation. So, be patient and compassionate with each other as you work to care for your loved one.

What has been your experience with going from being in hospice to out?

Blessings,

Rev. Katie

Happy Mother's Day?

I went to the mall yesterday, which in hind site I realize was a bad idea on the day before Mother's Day. The mall was packed with shoppers, full of sales associates shoving perfume samples at me, big pink signs with roses and fancy script saying "Happy Mother's Day," and tons of sales people. I tried to walk through the mall quickly with my head down, but if I looked at anything, unfortunately, a sales associates would catch my eye and ask: "Are you looking for something for your Mother?" When I would say "Not today" they would reply, "Well, I can help you find something for her" or "Don't forget to get her something before tomorrow."

I have never really been bothered by the holiday push. I used to work in retail and I know they only do it because it's their job and the stores focus on the holiday because it makes a lot of money. I tend to be able to ignore it even when a holiday does not feel joyous to me. But this year I had a harder time with the Mother's Day push than usual. I felt angry, sad, and like I could cry right there in Macy's.

I really felt like just looking someone straight in they eye and saying "Well, my Mom is confined to her bed, can't move her limbs, dying from dementia. She can not pick anything up to touch it, she does not need new clothes, she won't use new jewelry, her sense of smell is low and she is not really going to use the Joy perfume we would usually chip in to buy her, she rarely talks, can't read, and doesn't open her eyes very often to look at things. So, can you tell me what you might have in the store that I can buy for her?"

That would have been really rude, and I never would have done that. However, just thinking it made me realize that last year I would have been able to easily buy my Mom something from the mall. I still would have needed to accommodate for her dementia and Parkinson's but I could have found her something pretty she would have liked. Now it is just not the same. My Mom is still alive yet the ways in which I would have cared for her before, or the things I would have given her previously do not apply. She is not gone, but some things are lost. I did not know of anyone who would really understand what I was going through except my best friend who's mother had died a few years ago. She would be the only one I could ask how to get through Mother's Day, even though my Mom is still alive. My friend would understand what I meant, and she did. She powers through the day like all of us who's mothers are either sick, dead, absent, or even people who have abusive mothers. You just get through the day the best you can and make sure you have people you can call on when you are sad and grieving.

Flowers for Mom. Photo by Jeff Norris.

I am a firm believer that people with dementia are still here and they can still enjoy things. I try to remember that every day. But that does not mean we do not grieve over the things they can no longer do or miss how we would have interacted with them before they got dementia. Holidays tend to remind us of this grief when the rest of the year we try and ignore it and make the best of the situation we are in.

It would be bad ministry for me to say that you do not grieve for your loved one with dementia even when they are still alive. Sadness and grief is part of the process and I truly think it helps us heal and move on to be able to create meaningful time together, rather than getting stuck by trying to deny the illness is there.

So, I am sad about Mother's Day and for the parts of Mom that are not here anymore, but we still find ways to celebrate with her, bring joy into her life, and access the part of her that is still here- her soul.

My siblings and I will be going to dinner at Mom and Dad's tonight. Mom loves family and good food. Mom also likes beautiful things and color, and while I could get her something like a pretty picture or statue, that would make the house more cluttered, which does not help people with dementia. So, my husband, son and I made her some flowers out of watercolors and paper doilies which are made with love, pretty for her to look at, but can be thrown away after a while and do not add to clutter and confusion in the house.  Of course though, her favorite gift will be the gift of time we spend with her, which is way better than the perfume, purses, and jewelry at the mall.

Blessings,

Rev. Katie

Movie Review: Do You Know What My Name Is?

We went to see Do You Know What My Name Is? at the 2013 Cleveland International Film Festival. This movie is about the Cleveland nursing home, Eliza Jennings which is using the SAIDO Learning Memory Support Program from Dr. Kawashima who created this program in Japan. Many of the descriptions of this movie state that the SAIDO Learning Program reverses the symptoms of dementia.

You may remember that I wrote a blog post a while back about how we should not ask people with dementia, "Do you know what my name is?" because this is a memory based questions which can be highly frustrating and it is really only a question we ask out of our own need. We need our loved one to acknowledge us and we think the only way they can do that is by remembering our name, which is not true.

The Eliza Jennings staff uses the question "Do you know what my name is?" as a marker for improvement in short term memory. If the person does not know, they say "That's ok, my name is John." So, they were not pressuring the person with dementia as most people do when asking this question.

This was a great documentary following the six month study of using the SAIDO Learning Program with a small group of residents with dementia. The program is based on providing simple math and reading tasks in 30 minute sessions five days a week with a learner/leader ratio of 2 to 1.

The documentary did not go much into the science behind the program, just that it focuses on working with procedural memory. Procedural memory is the part of your memory that helps you perform tasks, but most often tasks we eventually perform without really thinking about them, such as driving.

I did not see a reversal of dementia in the movie, what I saw is what all of us who work with people with dementia see, that compassionate care, socialization, and simple yet interesting tasks that speak to a persons emotions allow people with dementia to be more engaged and function better. Dr. John Zeisel,  Dr. Cameron Camp, and Tom and Karen Brenner all use activities focused on procedural memory in their innovative dementia care programs. The programs are less about math and more about art and the latter two follow the Montessori method. The simple math and matching that the SAIDO system uses is not all that different than the simple color and shape matching and art of the Montessori and Zeisel methods.

It is important to notice that none of the facilitators corrected the learners. If they got a math question wrong of spelled their name wrong, they always said "That's great!" This is essential in dementia care. People learn not through being reprimanded and being told they are wrong, but by being encouraged and allowed to work within their limits. They did not need to be told they had not gotten everything right to know six months later that they could perform the tasks better. In six months the learners improved, but not because anyone corrected them when they got something wrong. 

One thing that was not stated in the movie as being important, but which I saw as really the key to the success of the program was the socialization. Each day the learners were engaged with a facilitator and one other learner in special time together. One resident, Mae, was not engaged at all in the beginning of the trial but later started talking more and recalling childhood memories. The key to that seemed to be her learning partner, Esperanza who really brought Mae out of her shell.

Then there was Evelyn who often sat by herself in the begining of the trial and did not engage in group activities. She received personal socialization every day through this learning program and became more talkative. By the end of the six months she was able to recognize her family better, talk more, and knit again.

Even Dr. Kawashima who created the SAIDO Learning Program commented in the movie that he thought the communication at Eliza Jennings was better than what the dementia patients in Japan going through the SAIDO learning program were receiving.

One stand out component of the movie, for me, was Eliza Jennings' staff member John Rodeman who narrated the movie and eventually was one of the facilitators of the learning sessions with the residents. He was the one who in the beginning of the movie was asking residents if they knew his name and by the end, a few of them did. John has a skill rarely seen in those caring for people with dementia. He believed in them and showed them dignity and respect. He saw the person, not their illness. John engaged in casual open ended conversation with the resident and really was an important part in socialization and reaching their emotions to help them feel loved and show them dignity and respect. He was kind and if they did not know his same, he said "Ok, let me tell you." You have to see the movie to see the way he interacts with residents. John instinctively knows how to communicate with people with dementia. I wish I had that innate ability. I learned a lot by watching John's example.

Matt & Karen Cahill, Dale & Chris Windsburg (all four are children of resident Evelyn), and John & Adrienne Rodeman at the Cleveland International Film Festival

For me, this movie showed how the right style of learning, whether it is math based or art based, music based, compassion, and socialization are key to good dementia care. This method takes a lot of people. Eliza Jennings worked with all of the staff members- nurses, maintenance, kitchen staff, and volunteers to make this program work. In fact, John used to work in maintenance and did so well with residents that he became an integral part of the SAIDO project. Clearly the facility put their full effort into this program and all the residents in the initial trial are still doing the program and they have added new residents to the program.

This was an inspiring movie to me, but maybe not in the way other people might think it is inspiring. I did not really see a reversal of dementia, rather I saw a program that understands the brain and knows how to create an environment which allows people with dementia to function to the best of their ability. This means that even three years later, when a persons dementia inevitably progresses, the SAIDO program would still help the person function as well as they can, better than if they had not had this intervention. This program does what our Carolyn L. Farrell Foundation for Brain Health and others advocate for: focusing on what ability a person still has and maximizing that to help them have a happy life. Far too often it seems that people with dementia fade away quickly due to the illness, but really it is due to not knowing the proper care to engage them.

Blessings,

Rev. Katie

Book Review: You Say Goodbye and We Say Hello: The Montessori Method for Positive Dementia Care

I just finished Tom and Karen Brenner's book, You Say Goodbye and We Say Hello: The Montessori Method for Positive Dementia Care. You may know that I went to a Montessori school for Pre-K-8th grade, my son attends a Montessori school, I have taken classes with Dr. Cameron Camp who has created Montessori Based Dementia Care activities which he has been using for over 15 years, I have training in the Montessori based religions education program Spirit Play, and we use the Montessori method in the art care activities we use with people in the CLF Foundation programs. Basically, I love Montessori and the principles are part of my everyday life. So, I was very excited to see another book about caring for people with dementia with Montessori methods.

I have never had the pleasure of meeting Tom and Karen Brenner, but I know that Tom has a MA in Gerontology and Karen is a teacher who has opened Montessori schools in Chicago. They have been using the Montessori method for many years with people with dementia and you can see in the book how they have found this method helps bring meaning and purpose into people's lives. Here is a short summary of what I thought of the book.

Copyright: Jeff Norris

What I Liked:

• Some people may take writing style for granted, but I appreciate that this book is written in a more conversational and understandable style rather than being full of jargon which is not accessible to people who are not in the medical field. This means the book can be used by family members as well as professional caregiver. 
• The Brenners understand the intense emotions that go along with dementia. They are compassionate in talking about our assumptions of people with dementia and how us family members struggle with judgement, guilt, frustration, sadness, and fear. For instance, they talk about how lonely and heartbreaking it can be to have to introduce ourselves to our own mother. Basically, I felt cared for by this book, like someone understood the emotional struggle and yet did not judge people for their feelings but gave you new insights and ways to cope with them.
• The book addresses deep spiritual questions of dementia such as: "...can a person still be who they are  and not remember who they were? ...Is remembering all we are? Is a person lost to us because they don't remember their wedding day, or the job they held for thirty years?" (p. 24-25.) Throughout their book they answer these questions, basically by saying our loved one is still here (just as Dr. John Zeisel talks about as well.) We need to work with their abilities and help engage their inner selves, which is never lost, just much harder to find through the fog of dementia.
• There are examples of Montessori activities in the book but what is even better is they really talk about how to find activities which are meaningful to the person. The same activity will not reach every person the same and sometimes an activity you assume someone will not enjoy, they absolutely love. It is all about getting to know the person as best you can and also trying new things with them to see what will reach them.
• They answer well the common question: "Montessori is for kids, why would we use it with adults? Isn't that demeaning?" No matter our age, we are all curious, we all want to be seen for who we are, and we all want to be creative and accomplish things we can be proud of. The Montessori method is simply a way to help reach people on the deepest level where we all reside. They also address the issue of activities that seem "too simple" like matching wooden cylinders into holes. If you have ever touched and used Montessori materials, you know they are made with natural materials. They are beautiful and colorful, you want to use them, no matter your age. I have seen non-Montessori parents go into a Montessori classroom and be drawn to the Bead Bars, Trinomial Cubes, and Metal Insets because they are just so beautiful and thus fun to use. 
• On pages 123-124 they describe a flower arranging activity and have listed not only how to do it but the purpose of the activity such as range of motion, small motor activity, creativity, and cognitive stimulation. It is a great example to show people how "simple" activities are not really so simple. They really provide a myriad of benefits.

What I Would Have Liked More Of:

• Basically, there is just one thing I would have liked more of, and this is really more of a personal preference. I would have liked more information about the Montessori method and why it works. There is so much about the method that reaches people with dementia and I feel like if you have a knowledge of Montessori you will see how they use the method in more ways than just finding meaningful activity and correct ways to prepare the materials. If you are not a Montessori person, you could use some more insight into why Montessori works and all the intricacies of it like the use of color, texture, how to put things away so they are useable, etc... I think the Brenner's communicate well and make things understandable so could have provided even more information about Montessori methods and principles in a way that people actually understand it and see the meaning behind it. (Then again, this would have made the book longer and it is a fast and easy read so you can implement techniques right away.)
• What I have not seen in really any of the books on dementia are these activities and this care being provided in a home setting. Yes, all the books, including this one, say "you can do this with someone at home" but there are few stories about such care. I will write a post about this, but there are specific things about a home setting that make these activities hard to do, and part of that is often the person with dementia will do activities for an outside caregiver or friend but rarely for the family members who care for them on a daily basis. The socialization and environment is completely different at home versus an institution and unless you work with people at home on a long term basis and see the dynamic with the family members, you can not make the claim that these activities will work just as easily at home as in an institution. 

Blessings,

Rev. Katie

"Do You Know Who I Am?": Tapping into Creativity Instead of Memory

I have noticed that as Mom's dementia has progressed and she can communicate less, people tend to ask her "Do you know who I am?" or "What is my name?" I completely understand why they are asking this. We have this need to know that our loved one still knows us. We wait in anticipation for our name as if that means our loved one can recognize us and we still have a relationship with them. We ask this question out of our need. Out of our fear that we will be forgotten and that our loved one has changed forever. As if their memory of us proves that we are still here. I have asked this before too, however I now have come to realize it is a terrible question to ask.

I see in Mom's eyes that she wants to be able to say the person's name and she can't. She gets agitated and upset when she can't respond to you. It is painful for her that her brain does not work the way she wants. Asking her "What is my name?" is extremely degrading and upsetting. We don't mean for it to be that way, but it is because we are making it abundantly clear to them that something is wrong with them rather than celebrating what is still wonderful about them.

In the work that we do with the Carolyn L. Farrell Foundation for Brain Health, we focus our programs for people with dementia on creativity and imagination rather than memory. This is because it is SO frustrating and devastating for people with mid to late-stage dementia when people ask them to use their memory. It is a reminder to them of all they have lost and it makes them think they can not contribute to the world because they do not have the precious knowledge we are asking them to produce.

Too often I see in nursing homes and adult day cares activities based on memory. A caregiver stands at the front of the room and asks questions about "the old days," as if this will comfort people. "Who was a famous baseball player in the 1930's?" the caregiver calls out. Most people sit and stare at the wall or fall asleep. "What were your favorite kind of shoes to wear when you were a kid?" Silence, and some people's brows furrow and they get anxious. Does no one realize that they are asking these people things they can not remember? It is like asking a two year old "What is sixteen divided by seven?" This is not something most of them can do and it is aggravating for them and honestly makes them feel bad about themselves. 

However, you can do things like tell stories about "the old days" and then usually people talk about the story. You can show pictures of events, like Christmas and all of the sudden someone will say "I used to love Christmas. We ate cookies." They feel happy and know they can contribute to the world.  They are not being tested or judged on the basis of what they remember.

Mom has not called me by my name in at least six months. She does call me "honey" when she sees me. She still remembers my son's name sometimes or asks me "Where is the little one?" Just because the exact name does not come out or just because someone does not recall any baseball players from the 1930's, that does not mean we have lost our loved one. Even when they can not speak and seem to stare off at the wall all day, certain things will still bring light to their eyes. Play some of their favorite music, tell favorite family stories. If they can still use their hands, create art with them.

Tapping into creativity and imagination reaches deep into their soul, touches their spirit, and does not ask of them to use the memory they have lost. It does not remind them of their illness but celebrates their abilities.

Blessings,

Rev. Katie

Mom's German Chocolate Cake

The cake most of us in the family requested from Mom for our birthdays was a German Chocolate Cake. Mom has made that cake for all her kids, many grand kids, and on family occasions. She has taken it as a carry-on to bring to one of her children living out of state. I think we have even shipped it out of state. My Dad's birthday is this month so it was only fitting that we made him Mom's German Chocolate Cake. You can't use a boxed mix for this and the recipe has a cooked egg frosting. Many of the techniques of making this cake are not things most of us do anymore because there are so many boxed items or mixes that we use instead. However, I like making this cake because I know the tricks to making it having helped Mom with the cake so many times before. Like how the frosting really takes about 45 minutes to make rather than the 12 minutes the recipe says, and if you cook it on medium as the recipe says, you will get scrambled eggs. Or making sure to line the bottom of the pans with waxed paper because this cake really will stick to the pan even if you grease it, and it falls apart easily. All little things that Mom taught me from the many times we made this cake together over the years.

Click to read Mom's note. Photo by Jeff Norris

Every time I make one of Mom's signature recipes, I am proud and sad. It always reminds me of the end of an era, expect that it is not quite the end because Mom is still here. When I went to get the recipe out of my recipe box, it was hard for me. Almost all of the recipes in the box are handwritten by Mom, given to me at my wedding shower 13 years ago. Mom has not been able to write for a long time now and I have not seen the smooth, beautiful curves of her cursive in years. When I read her letter to me on the inside of the box and the instructions for the recipes, I realize that I have not heard her say a full sentence in at least eight months. She has not been able to make any recipes for over a year. It is hard for me to know what she used to be like, and I feel like that is not my mother anymore. Not that she is not longer Mom, but that I barely remember what she used to be like. Which is strange, because she only started her journey with really visible dementia about six years ago. I feel bad that I do not really remember her as she was before.

As I saw my beautiful niece feed Mom small bites of the cake, I thought of how my son and my younger nieces and nephew may not really remember Mom as she was before. In fact, some of them have never tasted Mom's famous cake made by her hands. While they love her and like helping care for her, I still feel sad that they did not also get to experience her as cooking up a storm, knitting, laughing, and helping take care of them when they were sick.

I loved making the cake for Dad because I could make sure a bit of Mom as she was before was still there even while we enjoy having Mom there as she is now. It was kind of a way to bridge the two times in her life together for both Mom and Dad.

Me and Dad with Mom's cake

It is a hard transition, loosing someone in this way and seeing at special times in our lives how one day they may not be there at all. It is all the little things, like a cake, that make you realize how things have changed and how different they will be in the future. It is a weird combination of sadness from what you have lost, but also happiness to still have them in your life, and joy that you can carry on some of the things that are special to them which they can no longer do.

Blessings,

Rev. Katie

The Dreaded UTI

Urinary Tract Infections (UTI's) are common in older people, regardless of gender, especially when they become incontinent and rely on the use of an adult diaper. However, many people with dementia or other illnesses are also to the point that they can not tell you if they have pain anywhere, and so you have no idea that an infection is present. In fact, you can have a UTI without pain. But when an elderly person has a sudden change in cognitive function and actions, always check for a UTI.

Mom had a good Christmas Eve but then on Christmas Day she would not eat, not open her eyes, and she had labored breathing. We could not really get her to respond to us anymore and she also lost her limited amount of speech. After a few days, the hospice nurse had Mom checked for a UTI, which came back positive, and we put her on antibiotics. It has taken many days but Mom has regained some of her self back in the last day. When we visited yesterday her eyes were open, she would say a few words to us, and even laugh at what we were talking about. Her appetite has not really changed much, but at least she was much more bright and cheerful.

When you work in a nursing home or in hospice, you are told to always check for a UTI when sudden changes occur but for those of us taking care of loved ones in our own at home, no one may have told us that. I would insist on checking for a UTI at any time there is a big change. It does not hurt to check and if you are right then you have treatment options. I will caution that if your loved one takes the course of antibiotics appropriate for their UTI (which means do not only have the initial stick test done, ask to have a culture sent out), and they do not get better, do not insist that they still have a UTI. Sometimes people will see marked improvement in their loved one after a UTI and then the next time they have one and do not get symptomatically better, the family wants more antibiotics even when tests show the infection in clear. As long as the UTI tests are coming back negative, they do not need antibiotics and they may truly just be progressing in their disease. I know this can be hard to accept, but repeated courses of antibiotics are not safe for long periods of time and you could cause even more problems in the long run. Also, denying that the disease has progressed does not give you, your loved one, and the rest of your family and friends the ability to grieve the change and mentally prepare for what is going on.

Blessings,

Rev. Katie