Dementia Care Partners

Usually when we talk about caring for another person, we use the term “caregiver.” However, the term many of us in the caring community like to use now is “care partner.” I love this term because it means that both the person who is being cared for and the person doing the caring are partners in the caring relationship. This means both of them gain from being in the relationship.

In their new book, I Care: A Handbook for Care Partners of People With Dementia, Jennifer Brush and Kerry Mills define a care partner in this way:

"When someone takes care of someone else, we call him or her a caregiver. This is a natural title and one we all understand, however, when we use this title to identify a person who provides care to a person with dementia, we are missing an important part of the equation. You see, there is nothing left in this title for the person with dementia to contribute. By referring to these people as a “care partner,” we are recognizing their contribution as a partner. With who are they partners? These care providers are important partners for the person who has dementia. This means that they are not only giving, but also receiving; the same as the person with dementia. This is the first step to changing your perspective. This also means, you, the care partner, need to prepare yourself to receive as well." (Brush, J. & Mills, K. (2014). I Care. Balboa Press.)

As my Dad, Dr. Charles Farrell says, which is shared in Brush and Mill’s book, I Care:

“In the past two years we have moved into the magical, mystical, intimate, Silent World of Dementia. This is truly a wonderful place. Our home has become quiet. At night it is essentially silent. I sleep in a small bed next to Carol and frequently we awaken at the same time. I care for her physical needs in silence. We then move close together, I place my arm around her shoulder and my head on her chest and feel totally relaxed. I feel her breath as I count her respirations and feel her heartbeat. If Carol is anxious and fearful our vital bodily functions are out of synch. As we simply lie together, we become closer and closer together and finally truly become one. We are as much in love today as we have ever been in the last 50+ years.

Dementia has not robbed Carol of her personality and it has not robbed us of each other. We have simply become Partners.”

Below is a fantastic video of care partners, with Bill sharing the story of his wife Glad who has Alzheimer's. Their story sounds so much like my Mom and Dad's. Dad even used to bike with Mom on a tandem stationary bike to help with the Parkinson's symptoms of Mom's Lewy Body Dementia. Dad would love this bike in this video and I wish we could find one.

Get out a tissue, this video will make you cry:


Blessings,

Rev. Katie

Book Review: "Why Did Grandma Put Her Underwear in the Refrigerator?"

"Why Did Grandma Put Her Underwear in the Refrigerator?" is a short story which explains Alzheimer's disease to children. It is written by 17 year old Max Wallack who, at a young age, lived with and was a caregiver for his great grandmother.

Here is my quick review of this book:

This may be the best book I have read about Alzheimer's and advanced dementia care. It is simple and should be read by every person, adult or child, who knows someone with Alzheimer's disease/dementia. Which means, everyone in the world should have a copy of this book. 

Why is this books so wonderful?
There are many reasons why this book is so great, but as a mother of a child who lived with his grandmother with dementia, I feel that there is no other book like this out there for kids like my son Jeffrey. While other children's books about Alzheimer's have been good at helping explain dementia to Jeffrey, most of those books talk about kids who do not actually live with their grandparent with dementia. Rather they talk about how to visit with their grandparent who usually lives in a nursing home. This book is the first good resource I have found for kids who live with a loved one with dementia and really captures what life is like for them. Being a caregiver as a child is difficult. They have to figure out how to be a child in an environment that is not always kid friendly. It can also be scary and sad for them to watch thier grandaprent change and get sicker. It is hard for them to figure out how to communicate with their loved one as the dementia progresses. This book talked honestly and compassionatly about these issues which can help kids understand living in a situation that most of their friends will not be experiencing. My son Jeffrey's review of the book (below) will help explain how a child relates to the book.

Max Wallack with his book. (Copyright Max Wallack)

The other great thing about this book is that it is quite advanced in it's understanding of good Alzheimer's care. Even many of the books written by doctors in the profession do not talk about how to effectively communicate with and care for people with dementia.

For instance, the grandmother in the story gets frightened by a kitten, and the child, Julie, rather than "reorienting" her by telling her grandmother that the cat is a kitten and not to be afraid of it, Julie instead tries to make her grandmother feel better by telling her about her day at school. In the old, yet still often taught, way of Alzheimer's care, caregivers are taught "reality orientation" where you would correct the person and tell them that the kitten really is not scary. Such as saying "Remember, that is our kitten Molly who you have known for years. She is not scary. Let me put her in your lap so you can pet her." This kind of care increases agitation and can result in destructive behavior. Can you imagine, if you thought that kitten was a scary lion and someone plopped it into your lap? The poor kitten might go flying across the room! Instead, as the book shows, entering into the world of the person with dementia and knowing that they see things differently than we do allows us to effectively help them deal with their situation. 

There is another great part in the book where Julie helps her grandmother eat by putting her food on a red plate. Again, this is advanced dementia care. People with Alzheimer's often need high contrast in order to see things well. Sometimes they can not see chicken or mashed potatoes on a white plate and so they do not eat, start to loose weight and can become malnourished. Changing the color of the plate increases their ability to eat. The same contrast can be used in many other situations such as the common problem of incontinence. Often people can not see a white toilet that is on a white wall so if you paint the wall behind the toilet dark blue, they can find the toilet and incontinence decreases. 

In the book, Julie also uses art as an activity with her grandmother. Julie says, "Grandma never forgets how to make great drawings." This is the essence of the work we do with the Carolyn L. Farrell Foundation for Brain Health. We use art as a form of care. Humans seem to never forget how to be creative and use their imagination. If we can tap into that ability then we can create meaningful activities for people with dementia which increase their joy and decrease agitation and depression. 

Jeffrey's Review: A Child's Perspective
Jeffrey is nine years old and for two and a half years he lived in the same home with his grandmother with dementia. Now he lives just a few miles away and visits her often. This is what he has to say about "Why Did Grandma Put Her Underwear in the Refrigerator?":

"A lot of the book sounds like when we lived with Beep (that is what we call his grandmother). There was the part where the girl dresses up for Halloween but it scares her grandmother so she has to take off her costume and can't go trick-or-treating. Sometimes there are things I couldn't do when we lived with Beep because it upset her or was too confusing for her. That would make me mad but I also knew she was sick. I wanted to be able to do what other kids could do at home. The girl in the book also had fun with her grandma though, and I had fun with Beep, like our Edamame War. I understood the book and it sounded a lot like our life, except Beep is a lot sicker now." 

Both Jeffrey and I recommend this book and I already bought five copies so we can give them to others who need it.

About the Authors:

Max & Great Grams. Copyright M. Wallack

At 17 years old, Max Wallack is no stranger to Alzheimer's disease. At the age of ten, he was already a seasoned caregiver to his great grandmother, Gertrude, who lived at home with Max and his family. Mr. Wallack is a student at Boston University and a Research Intern in the Molecular Psychiatry and Aging Laboratory in the Department of Pharmacology and Experimental Therapeutics at Boston University School of Medicine.  Max is the founder of  PUZZLES TO REMEMBER. PTR is a project that provides puzzles to nursing homes and veterans institutions that care for Alzheimer's and dementia patients.

Carolyn Given is an experienced caregiver herself and an accalimed middle and high school educator with particular interest in intergenerational programming. Prior to her teaching career, she served as her town's Council on Aging Director and later became cover-story writer and editor of The Senior Advocate (now called the Fifty Plus Advocate Newspaper), a Massachusetts-based mature market publication. Most recently she was the recipient of an award from the Soul-Making Keats Literary Competition sopnsored by the National League of American Pen Women. 

Max and Carolyn. Copyright M. Wallack

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

Dementia Safety Issue: Home Alone

There are many safety issues for people with Alzheimer's/dementia such as driving and falls, but by far one of the biggest safety issues is leaving someone with dementia home alone. For some reason most caregivers can understand the need to take away the car keys, put up grab bars and bed rails to prevent falls, but we have a hard time accepting the fact that it is not safe to leave someone with dementia home alone. I think this is due to a few factors, one is that not enough people have the ability to stay home with their loved one or the money to hire caregivers, the other is that our loved one is an adult and we assume they should be able to stay home alone.

Clearly, we need two things, first more resources for people to be able to hire caregivers or find ways to create a community volunteer system of companions for people with dementia. Second we need to accept the fact that even though our loved one is an adult, their mind is reverting back to a child. This does not mean we respect and love them any less, we are just understanding the change in their abilities and we will work to keep them safe.

As soon as you notice your loved one forgetting what they were doing in the house, leaving the stove on, wandering out during the day or night, falling, or being confused in their own house, it is not safe to leave them home alone, even if they are sleeping. This would most likely start in later mid-stage dementia. As dementia progresses, people revert back to a more child-like mind and ability. You will even notice that they may not recognize themselves in the mirror because they only recognize their face from when they were in their 20's. Cognition and memory regress. We do not leave our kids home alone at 3, 5, 8 years old, even if they are asleep. It is not safe. We may not like to admit it, but the same is true for people with dementia who's minds are going back to being similar to that child of 3, 5, or 8.

Leaving someone home alone is not safe because anything can happen. No matter how well we think we know their ability or how safe we think we set up the house, we all know accidents happen. Even someone who is bedridden can get sick while you are gone, decide to try and get out of bed even though they can't and fall, or they could become afraid and panic thrashing and hurting themselves on bed rails. Dementia is unpredictable and while yesterday it may seem like your loved on is fairly safe and won't get too confused, today may be the day they leave the stove on with clothes on top of it, or get hungry and try to cut vegetables with a sharp knife and forget how to use it and cut themselves. Or what if you get in a car accident or get a flat tire and while you thought you were leaving them for an hour, you are now gone for 12 and no one knows your loved one is at home alone? I know all of this sounds scary and you might think "this won't happen to my loved one,"but it does. I was shocked the first time Mom left the stove on because she had not even cooked in months. Or when Mom would get suddenly scared not knowing where the dog is and walk out into the back yard to look for him.

While I wish caregivers were not so expensive to hire, they are, and many people can not afford to hire 24 hour watch for their loved one. However, I have come to realize that if we just ask for the help we need, often we have friends or family members who will help out. I know quite a few people that go over a few hours a week to sit with someone with dementia so that their family member can go to the store. If you find a few people like that then you can have a rotation of people coming in for the week to help out. Or there are even neighbors who will check in on your loved one hourly which is better than just leaving them alone completely all day if you have to work.

Don't be afraid to ask for the help you need, the worst someone can say is that they are unavailable. And if you know someone with dementia and you want to provide help, offer to come over and sit with them. Often families don't ask for such help because we assume it is too much to ask, too much of an imposition, and no one will want to do it. If you offer, you might just be giving that family a wonderful gift they were too afraid to ask for.

Blessings,

Rev. Katie

Home Care During Natural Disasters

Hurricane Sandy affected many of us in Cleveland and left quite a bit of Cuyahoga County without power. Mom and Dad have been without power for three days and the city estimates that most people will not regain power for another three. Being without power is difficult for everyone, but I did not realize what it would be like for someone who is ill and homebound.

If my husband and I did not have electricity, we could go stay with friends, or go to the church to warm up, recharge our phones, and even use a microwave. But Mom can not move and we can't just take her to the church or even easily bring her over to stay at our house, where we do have power. When we bought our house, we specifically looked for a house with a bedroom on the first floor so Mom and Dad could stay here if they ever needed to. However, to get Mom here now would mean getting the Broda chair, all of her adult diapers, wipes, bed pads, other supplies, and the Hoyer lift into the house. Not an easy thing to do and quite stressful on Mom. Hospice offered to take Mom to stay in a nursing home until the power came back on but that would be so traumatic for her that we decided not to do it. When I was working as a chaplain in home health care, we would take people for respite care for five days to nursing homes so the family can have a break. However, it was such an ordeal to get the person ready to go, then they rarely ever adjusted well to the move, and their care was not adequate often resulting in missed medication, illness, and bed sores. We just could not put Mom through that if we do not have to.

Mom's makeshift bed near the fireplace.

In order to make Mom as comfortable and safe as we can, we moved Mom, the lift, and even the mattress into the family room where there is a fireplace so she can stay warm. We actually had to put the mattress on top of the couch and coffee table (don't worry, it is the strongest coffee table ever) and we set up chairs around the bed at night for guard rails. Mom's wonderful caregiver Ana has been there every day and knows how to make great food out of what is available in the pantry. I am able to wash any laundry at my house and we can bring them food they might need. We are just lucky Mom is not hooked up to any electrical equipment.

If this goes on for too many more days, we can move all of Mom and Dad's things to our house, but really any move would be very stressful to her. We also have the option for her to stay at Westlake Village since they have opened up rooms at reduced rates for people in need. We know she would get great care there.

It has amazed me how so many people have been offering their homes, food, and resources to others in the community without power. Our church has been open for people to warm up and recharge and invited families in tonight to play games and watch movies. There are SO many people willing to help right now, but I never realized that when someone is homebound it is not so easy to help them in a situation like this.

If your loved one is in a home hospice or home health situation, please know that you do have options if there are places that are open in your area. If your loved one is in hospice, your hospice provider should have called you and offered a care facility placement for them. Many local retirement communities and skilled nursing facilities will provide reduced rates for them to stay there until the power comes back on. You can also contact the Red Cross and local food pantries if you need food and Meals on Wheels can also bring you hot meals.

Stay safe everyone!

Blessings,

Rev. Katie

Headlamps come in handy during a power outage.

Caregiving: On Our Own Journey

I was helping to lead a training on activities for people with dementia the other day. Speech-language pathologist Kathryn Kilpatrick from Communication Connection was one of the presenters. She had a lot of great advice on how to communicate with someone with dementia which I will be writing about later. However, one of the comments she made really stuck with me as it addresses a problem I see all the time in families trying to care for a loved one.

Kathryn said that each caregiver is on their own journey through this process. What she meant was that we will all handle the illness of our family member differently, and that's ok. Often what happens in families, and were I see the most difficulty created for them, is family members judging what kind or how much caregiving other people in the family are doing. 

There are many paths on this journey. Photo by Jeff Norris

For example, I was with a client once who was telling me about her "ungrateful" child who had not come to visit her in about a year. I noticed that while I think Miss. Mary is the sweetest little old lady ever, I really have no idea how she treated or still does interact with her child. While I could be fully present for Miss. Mary and help her through this issue, I also knew I could not judge her child. While we may not agree with what they are doing, unless they are putting their loved one in physical or emotional harm, or creating an unsafe environment, we should let people help as they are able.

Even in families that are close, no one really knows the relationship each child had and has with their parent so you can't expect everyone to to provide care in the same way. Some people can't handle daily amounts of time with their loved one. Some are only comfortable with the person one-on-one because it may be detrimental to be with other family members. Some people just are not comfortable with doing things like bathing, taking someone to the bathroom, or changing adult diapers.

We also need to recognize on this path that people may have more or less energy for the journey at different times. Sometimes a caregiver you may need to pull back on what they are doing because it becomes too overwhealming, and that's ok. You can hire more help or rearrange the care schedule so that everyone gets a break at times. That is why in hospice, respite care is offered to the family every six weeks.

In my work as a minister, I see far too many families fighting over the caregiving, each one expecting the other to do this or that, and missing the fact that everyone is on their own journey through this. 

Blessings,

Rev. Katie

From Their Perspective: How Scary Dementia Can Be

The more trainings I take about caring for people with dementia and the more I really try to see the world from their eyes, I see how scary and unsettling life is for them. A very simple example of this is the Hoyer lift we now have for Mom.

A Hoyer lift is a large device with a sling attached to it that lifts a person who can not walk and allows you to transfer them. We had a few new caregivers at the house to help train them on how to use the Hoyer lift because it is very easy to get bruised or dropped in the lift if it is not used correctly. Dad and I let the caregivers practice transferring us in the lift. Let me tell you, it is pretty scary.

You sit there while the people around you communicate with each other checking to make sure they have the right colored loop on the right hook so you do not fall out of the lift. They were just about to lift me once when I noticed one side of the lift was not attached and I was able to tell them before they lifted me. I was imagining what it was like to be Mom and maybe see that the lift was not correct, but not be able to speak to tell them. How scary!

Dad in the Hoyer Lift

Then they lift you up and you are suspended and swinging in mid-air while the device rolls across the floor taking you to your new destination. Someone has to watch your forehead so it does not collide with the metal bar at the top of the lift and another person holds your legs so they do not swing and hit the metal pole that is the center of the lift. You would think you might feel like you are wrapped in a cocoon but you really feel like you are swinging from a crane like a fish caught in a net that could drop at any time.

I can see how this is terrifying for persons with dementia. No wonder many of them get agitated during transfers.

Here are a few tips that might make something like this easier:

1. Always tell the person exactly what you are doing at every moment. "Carol, we are going to move you from your chair to the bed. We are getting the lift ready. Now we are going to raise you up."

3. Each caregiver should check to make sure the other got all of the loops on the right hooks as a safety measure. Say out loud that everything has been checked so the person can hear you and feel a bit more safe. 

2. Reassure safety: "Carol, we are going to raise you up. The lift is safe and we are here for you."

No matter what, much of life is going to be scary for persons with dementia. Even if you think they cannot hear you or understand, they probably can, so the best thing to do is communicate a lot with them. Always tell them what is going on around them and what is happening next. And in every situation try to see it from their perspective in order to understand their needs better.

Blessings,

Rev. Katie

Hospice: What's In A Name?

Last week Mom qualified for hospice. When most people think of hospice, they immediately assume that the person will be dying within the next few weeks and hospice is an emergency situation. But really hospice is a concept of care for terminally ill people in which care will be provided that will neither prolong life or hasten death. Hospice focuses on comfort care, maintaining dignity, and addresses the emotional, social, and spiritual aspects of dying. To qualify for hospice, a doctor must assess the patient and determine that they believe the person has no more than six months to live but really people can be on hospice for days or years so time frame is really not a given once someone is put on hospice. So, that is what the name hospice technically means, but we have found the name has meant so much more in how people have started treating Mom.

Mom in her new Broda chair with Morrie and Dad

It has been surprising to me and Dad that as soon as people heard the word "hospice," they have been calling and asking how they can help. Do we need food? Would Mom like visits from people?

The thing is that for at least two years we have been telling people directly: "Carol would really like you to visit with her." Yet just a handful of family and friends have visited her and in fact more people have withdrawn from her than visited her since she was diagnosed with dementia seven years ago.

There are a few things going on here that I can tell. One is, like with most diseases of the brain, people are scared of dementia. Dementia has a lot of stigma attached to it and people don't know how to communicate with their loved ones with memory loss. Due to fear and being uncomfortable, people often abandon those with dementia.

However, as soon as someone goes on hospice, things become more understandable to people. First they assume there will always be a medical professional around, so they wont be left alone with their loved one and they feel more safe. Just because someone is in hospice does not mean they have caregivers with them at all times though. Second is that people know hospice means someone is dying which interestingly makes people more comfortable than trying to deal with a chronic illness that they can't fix and seems to have no end in sight. The word "hospice" means "end" to many people. People think there are things you can do in the end, and everyone wants to be of use. They want to cook food, clean linens, do dishes, get groceries, etc...

What people don't know is that you can often help people most just by your presence, by spending time with them. In any illness, no amount of food made, sheets changed, or dishes cleaned matter in the end. The deep feeling of abandonment when people pull away and don't visit breaks someone's spirit in a way that is indescribable and at the end of their days, that feeling of long-term abandonment is what they will remember, even people with dementia.

In my experience with Mom and in my work ministering to many people at the end of their life, I have seen the most pain happen not because of illness or the question of "Why is this happening to me?" but rather the question "Why did everyone leave me?" This is the spiritual question at the center of their suffering.

I try to explain that people don't pull away because they don't care. Rather our American culture has taught us to be afraid of anyone who acts "different." We also hide the sick and dying and we think we can fix everything. We teach that the only way we are of use is to solve problems but not deal with emotions. So most people pull away because they just don't know how to be present with us in our hardest times.

Along the same lines, this abandonment happens not only to the person with dementia but to their caregivers as well. Bob DeMarco has written a wonderful piece about this in the Alzheimer's Reading Room called Are Alzheimer's Caregivers The Forgotten? He is much more blunt than I am and I would just like to quote one part of his post: "Like it or not, if you are a family member or friend of an Alzheimer's caregiver and you are not helping them -- you have abandoned them. I am sure this sounds harsh. But, it's not even close to the harshness of your own behavior."

I do hope that this blog post helps you if you have a loved on who is sick to know that your presence is needed before they end up in hospice. I know it's scary and uncomfortable, but if you can visit for a bit you will bring more help to your loved one than any medication, cleaning, or doctor can. You are walking with them through the hardest and loneliest time of their life. You are the footprints of God which will accompany your loved one on their journey.

Blessings,

Rev. Katie

Dementia Roller Coaster

Like many other illnesses, dementia does not progress in a linear fashion. One day your loved one may be unable to speak and the next day they are very chatty. One day they are so fatigued that you can barely wake them up to eat, the next day they can get out of bed on their own. It is a roller coaster ride of up's and down's.

As you may have read in my last post, Mom has progressed nearer to entering into end of life issues. Within a weeks time she became bed ridden, unable to hold up her own weight, rarely opened her eyes, and talked infrequently.

Today, Mom is a very different person. Her eyes were open the whole time I was there visiting. She looked brighter, had less Parkinson's shaking, and less anxiety. And, she was talking alot compared to where we were a day ago. Still she could not always get out what she was trying to say, but she could answer with more than just "yes" or "no" and was even using short sentences.

For Mom, and for many people with dementia, they will perk up and do better when they have company, particularly people they do not see on a daily basis. My brother and sister-in-law are in town and that really helped Mom perk up today. It is wonderful that she will have a few days of increased activity and fun while they are here. She is definitely on the up side of the roller coaster ride today.

Cedar Point Iron Dragon, Photo by Jeff Norris

With all the up's and down's, this roller coaster ride can be quite unnerving. You are never sure what each day holds and every time things get worse you don't know if it will stay that way. The other day I was worrying that I would never have increased communication with Mom, and that was scary. And yet today we were blessed with a great visit, which is wonderful. But is is also emotionally hard to handle. You can't prepare yourself for anything. Any increase in ability means you have more hope that your loved one will get better, yet you know in reality with dementia that even if you have a few months of better, eventually the bad will come back again. You feel like you barely get a breather before another severe drop in health occurs.

I also think of how hard the up's and down's must be on Mom as well. To be exhausted just trying to open your eyes and answer "yes" or "no" one day and then a few days later be able talk about how good lunch is. True, she has dementia and she probably does not technically remember how she was doing a day or two ago, but I do think on some level emotionally she feels the toll this takes on her. I can see how she is always just a bit unsure of how much she will be able to communicate with you each day. How badly she wants to open her eyes and speak on the days that she can't. Whether or not she remembers it, it has to be tiring for her.

Both the caregivers and the person with dementia need to find ways to ride the dementia roller coaster so it is as smooth as possible, enjoying the good days and making the best of the bad days. You can not read too much in to the bad days or the good days. I wish I could think that because Mom was doing better today that she will recover to where she was a month ago, but that is probably not going to happen. However, that does not mean I won't enjoy these times with her as much as I can.

Blessings,

Rev. Katie

Crossing Into a New Phase: End of Life Issues

I am not really sure how we got to where we are today. Mom started to get worse over the last two weeks. Less able to walk, less able to talk, and having a harder time eating. She went to the doctor last Monday and her mini mental-state test score went down from a 10 to a 3. On Wednesday she was in a wheel chair most of the time but could still walk a bit to get to the bathroom when we lifted her out of her chair. Over the weekend though she has gotten even worse.

With those of us who see her on a daily basis, she barely talks, maybe saying yes or no and two or three word sentences. She rarely opens her eyes and sometimes smiles. Fortunately when other people visit her or talk to her on the phone she speaks more so that is good. She can't feed herself at all and we feed her. She can't walk or support her own weight so we lift her to get her in and out of bed. She can't use the bathroom anymore. She now clenches her hands, which is very common in late stage dementia. It can be bad because the skin on her hands can breakdown. She knows who we are but usually doesn't say our names, except for when she asks for my Dad.

Today when I was there she never opened her eyes or talked to me. Yesterday she talked to me a little but only opened her eyes when my husband Jeff or my son Jeffrey talked to her. She especially liked when my son did some karate style moves for her.

While I take care of people in the end stages of life for my job, it is different when it is your own parent. I am still in a bit of shock as I did not think we would get here this quickly. It was hard for me to walk into her room the other day and see her looking like the clients I work with who are dying.
We are getting orders for hospice and for probably a Hoyer lift to transfer her in and out of bed. Starting tomorrow we will have two people in the house with Mom at all times, so we have hired caregivers 24/7. We have been unable to wash, turn, lift, and do basic care for Mom all on our own now that she has gotten so bad so quickly.

Fortunately Kendal at Home, a senior continuing care community that allows members to age well in their own homes, coordinated all of these things for us. In one day they found all the caregivers and will be getting in touch with the doctors for the hospice and all the orders we need for medical equipment. They coordinate all the equipment rental, all the care supplies, everything that we will need to make sure we can care for Mom safely and comfortably in her home. I am so glad my Dad joined the Kendal program because I don't know how we would have coordinated all this so quickly and also made sure we got people who were responsible and trustworthy. And, if there are any problems with any one system, we just call Kendal and they take care of it.

As we go forward I will keep you posted on what works for us in caring for her so that if you are in the same situation in the future you might get some help and support from what we do.

For right now, in terms of activities for Mom, she is not longer able to do activities. But, we can read to her the types of novels she has always liked. Since she does not open her eyes much reading and music would be a good option at this point. We can still try looking at photos when she is opening her eyes. We can talk about old fun family stories and just be there with her as best we can. And, since she is more alert when visitors come over, we will invite people over more so that she has some fun each day.

Blessings,

Rev. Katie

Accepting Caregiving

Now that we have moved from home, Mom and Dad are in need of some more help. Mom can not be left alone at all so unless someone else is in the house, Dad can't go out to the grocery store, to meetings, or really to do anything. Before we left, they got an amazing caregiver who comes four days a week for four hours, but Dad is realizing that they could use her more often. However, this is hard for Mom to accept, and I can understand why.

For someone with mid-stage dementia, they still know much of what is going on. They know they are sick, but they do not really know how sick they are. They may not believe they need to be supervised at all times, after all, they are adults. As Mom says, she does not want a "babysitter." It is very hard to say that her caregiver is not a babysitter though. They do projects together and she helps Mom get dressed and takes care of daily tasks, much of what our babysitters do for our son.

I really do not know how to help someone with dementia accept that they need a caregiver. They don't believe they need one and they don't understand why a family member can't be there 24/7. For some people I am sure they even become angry at their family for getting a caregiver rather than family staying with them all day. I can only imagine what they might be feeling: abandonment, misunderstood, angry, like they are being babied, and betrayed. All of this is understandable.

These are the hard times when it is up to us to make decisions for our loved one with dementia because they can't make the decision for themselves. We will always question when we do this because we really want our loved one to be ok with the decision. We want to treat them as adults who can still make rational choices and we do not want to upset them.

But on the other side of this, I know what it is like to have someone else make decisions for you when you can't. Sometime when my bipolar disorder is particularly bad, my husband has to make decisions for me, like make me exercise, go to bed on time, or tell me what to eat. When this happens, I am pretty mad at him for making choices for me, after all, I am an adult. But in the end, he is really taking good care of me and helping me have a better life.

People with dementia may never be able to look back like that and say that they understand we are caring for them well. However, if we were to go back a few years before the disease presented itself and asked our loved one if this was a good decision, they would probably say "yes." Sometimes we have to hold on to the understanding that if our loved one could understand, they would be happy with our choice.

Blessings,

Rev. Katie

Moving Out

It is with deep sadness that my family and I have decided to move out from my parents house. We have been here for two and a half years and have been able to help my parents in many ways. However, I am sure all of you caregivers know, 24/7 caregiving can be very hard to handle. It takes up a lot of your life and while you feel honored to do it, it also takes a tole.

Photo by Jeff Norris

For my family- me, my husband, and son,-it was becoming too hard for us to maintain our life and be live-in caregivers as Mom's care needs have significantly increased. We have discovered that we need our own space in order to create a strong family unit for the three of us.

We are only moving 2.5 miles away and we will still be helping to care for Mom. This actually allows for some help to come into the home and we have found a great caregiver who likes to do projects with Mom. She has worked as a nurse with the elderly population and really knows how to communicate with Mom and engage her in projects. I think this will actually make Mom's life more joyful as she will have more things to do and enjoy.

I do wish we could remain living with Mom and Dad as we love them very much and want to help as much as possible. It makes us sad to know we won't be here all day for them. However, as all of us children need to remember, our parents want us to be happy and healthy-they want what is best for us. Our parents never want us to give up too much of our lives or ourselves in order to care for them. Mom and Dad are supportive of our decision and are looking forward to having us take over some of the big family events in our new house.

We have had many good times living with dementia and we feel honored to have been able to take this journey with Mom and Dad on a daily basis. Jeff and I have learned a lot about family, love, and life by the example of my parents. We are so appreciative of all they have taught us and how close we have grown together. We are looking forward to the ways in which we will still be able to help them in the future in our new home.

I will of course continue to keep up on the blog since we will still be caregivers for Mom. It will be interesting to see how this change goes and what new roads lie ahead for all of us. 

Blessings,

Rev. Katie

"I Think I Lost My Mother"

It is quite an eye opening experience when you have to walk up to a stranger and say "I think I lost my mother, can you help me?"

http://www.flickr.com/photos/blackdutchdoublelibra/129954840/

Today Mom and I went to Jo Ann Fabrics, a large craft store. This is a store she knows well so when she said she was going to the restroom a few aisles away and she did not want me to come help her, I said ok. Clearly that was a bad idea.

Mom went to the restroom, I put something in my cart, and then I went right over to the bathroom to help her, only to find the bathroom empty. I then checked the men's bathroom and looked all around the aisles and could not find her. I started to panic. I had lost my mother.

I went to ask a sales associate who was helping another customer if she saw a woman in a long yellow coat with white hair. When she said no I told her and the customer, "I think I lost my mother, can you help me?" The sales associate was mid-aged, and just seemed to think I was weird. The customer was a little older, and immediatly said "Does your mother tend to wander off?" She understood right away that I was serious and Mom must have dementia. The customer was immediatly ready to help me search the store, when I saw Mom walk across the aisles so I ran over to get her.

For a slow lady with Parkinson's who needs a handicapped tag for the car, apparently she can be surprisingly fast at times. When I got to the aisle, I couldn't find her again!

A few aisles down I found Mom and all was well. She had gotten lost trying to find the bathroom. We finally got to the restroom and laughed hysterically at how I had lost her.

It is funny now, but in the moment it was really scary. I thought I might have to ask the store to go in lock-down like they do when a child goes missing. I had heard of this happening to people, and even Dad had mentioned that Mom has a tendency to wander off when he is getting something off the shelf in the grocery store. However, I figured it would not happen to me because I am faster than Mom and could keep an eye on her. I was so wrong!

When Mom first said she was going to the bathroom, I said I would go with her, but she said she didn't want me to. I really wanted to let her maintain some of her independence and since this is a store she knows, I figured I could let her get to the bathroom. I would then just follow a minute later so if she needed me I would be there.

It is hard for me to think of needing to care for Mom in the same way I need to care for my child. Actually, I no longer need to dress my son, but I do need to dress Mom. I have no idea where the line is between caring for her so much that I take away what independence she has left, and not caring for her enough so things like this happen.

Clearly I need to adjust my idea of how much independence Mom can have and care for her more like a young child. I hate admitting that because it can sound condescending or belittling, but I need to keep her safe.

This was another day of change and learning what phase of dementia we are now in.

Blessings,

Rev. Katie

When All You Can Do Is Laugh

This is something I wrote a while ago and forgot to post. Interestingly, the main point of it is very appropriate for the week we are having. We need to find more laughter this week!:

Have you ever been having such a bad day that all you can do is laugh? Laugh at times when most people might think you should be crying? Laugh because life is so messed up that you can’t even believe what you are experiencing is even happening?

That is what our evening was like today. Lately, there has just been a series of bad events with extremely sick family and friends, and in the middle of all that, Mom is getting worse and worse.

So tonight, as Mom was agonizing over the calendar again, Dad and I were trying, to no avail, to help her understand what was going on. Then all three of us started laughing. Laughing because it seemed like no matter what we did, nothing seemed to make sense. It was as if we could not understand how the heck life had gotten to this point where writing a lunch date on a calendar ended up being a monumental and anxiety ridden event.

I think sometimes in life we laugh because if we didn’t laugh, we would be crying.

Over the past few weeks, Mom has been more and more confused. Today I was doing the dishes and the water was on when I heard Mom talking. I thought she was asking me a question, so I turned off the water and asked her what she needed. She said “I wasn’t talking to you, I was talking to the person sitting next to me.” Then she paused and said “Oh, there isn’t anyone next to me, is there?”And she started laughing at what had happened.

We are in one of those times in our lives where everything is a mess and you go through every day just trying to survive and get to the next day. We are so worn out now that there is nothing else to do but laugh, which is probably about the most fun we have had for weeks.

So, don’t be afraid to laugh, even when things are awful, because laughter is a gift. Even in hard times laughter helps lift our spirits, it is a way of giving up trying to control everything, it allows us to let go of all that anxiety, and it tells us that in some small way everything is still alright.

Blessings,

Rev. Katie

Will We Ever Get A Break?

It seems like you just can’t plan anything when you care for someone with dementia and other age related issues. Dad has been planning for months to go on a much needed Buddhist retreat for this week, and Jeff and I are happy to take over all the caregiving for Mom. However, every time we make any plans, something happens and things get worse.

We noticed some major changes with Mom on Saturday and hoped that the trouble she was having was an isolated incident, a day when her body just was not doing what she wanted. Dad left early Sunday morning and Mom’s problem from Saturday seemed to be under control.

However, today, what we thought was an isolated incident, has come back even worse than Saturday. I can’t get a hold of Dad because he is on a silent retreat with no phones and no email. I could call the zendo in an extreme emergency, but I would not call this extreme.

Due to this change, she does not want to go out anywhere and I am hoping she does not cancel on the fun things her friends and family have planned for her this week.

Literally, it is just one thing after another and for a person with dementia who does not handle change well, this is just sad. I hate to see her struggling with wondering why she is worse today than she was two days ago. Everything is just so confusing for her. She often says “I just don’t know what’s going on Kate.” I wish she had a break from the progression of her illness. I wish we all had a break from the downward spiral she is in.

Mom & Morrie (Photo by Jeff Norris)

To top it off, we have a dog, Morrie, who is like Mom’s sixth child. Unfortunately, Morrie attacks our other dog Bailey every time food is around. But, for some reason, when Dad is not home, Morrie attacks Bailey all day. (I think this is some kind of alpha male thing.) Which means we can’t leave Mom home alone at all, or in a room alone because if the dogs fight, she gets in the middle and could get hurt. Or she will try a new discipline tactic, like throw a glass of water on the dog, and then I need to not only stop a dog fight, but clean up the water. Morrie also scarred Bailey so bad that she had an accident, which Jeff had to clean up in the midst of trying to make sure Mom did not fall. And yes, I know we should find Morrie a new home, but that would be like Mom loosing a child and she could not handle that. If this gets bad enough though, we would do it to make sure everyone is safe.

Ah, it’s going to be a long week. But Dad needs the time off and this retreat is really important for his spiritual and mental health.

For all of you in a similar situation, I feel for you. This happens with dementia and I am sure many other illnesses. Hang in there and ask for help if you need it. My sister is coming over to help out a few times this week, which is wonderful!

Blessings,

Rev. Katie

An Amazing News Story

This front page article in the Cleveland Plain Dealer by Connie Schultz is fantastic. It made me cry and reminds me so much of my parents. I just wanted to share it with you all:

Love and Determination in the Face of Alzheimer's by Connie Schultz

Blessings,

Rev. Katie

Just Add Water

The other day my Dad was in my parents room and I heard him say "I have to take all the drawers out because they are full of water." When he came out of the room I asked him if the ceiling was leaking, and he said "No, Mom just gave the bathroom a shower."

My parents have a walk-in shower with no curtain or doors in their bathroom because my mom can't step into a tub or regular shower anymore. Somehow Mom turned on the water for a shower and instead of aiming it at her body, she sprayed the whole bathroom down with water. All the drawers and cabinets were filled with water. Enough water that it seeped through her closed pill box and melted all of her pills.



Things like this have been happening more and more recently. Random accidents that you can't even figure out how they happened. Very much like a child actually. Like when I went to the restroom to wash my hands after lunch one day when my son was two years old and when I came into the living room there was flour all over him, all over the room, on the walls, etc... And I was only gone for a minute!

It may be a bit aggravating when things like that happen, but it is also pretty funny. I mean, how often does your bathroom get a shower?

Dad amazes me with his ability to joke about these incidents, clean everything up, and make sure Mom does not feel belittled or bad because of her mistake. I am quite proud of the way he has become more patient and understanding as he cares for Mom. I also love how Mom jokes about things too and her smile still lights up a room!

When these things happen right as you are walking out the door, it is hard to handle. However, there are many times when you can, and need, to find the joy in such events. It allows us all to laugh a bit together, see the beauty that still exists in Mom, and gives us great stories to share.

May we all find the joy in even the most unpredictable of life's events.

Blessings,

Rev. Katie