The Difference a Year Makes

I was looking through photos and noticed that I have a photo of Mom from almost exactly one year ago today. This photo of Mom and Jeff is from June 19, 2011.

Mom and Jeff June 2011

Sometimes I forget how much has changed in the last year. Mom was walking, able to talk with us, go out, and feed herself.

Today she is on hospice, barely talks, needs to be fed, stays in bed or a Broda chair, and has to be moved with a Hoyer lift because she can't walk or move on her own. You can tell from this photo that so much has changed in the last year.

Mom and Dad, July 2012

Photos like this remind me to not get too caught up in just what is happening right now but to remember that our lives are made up of all the years we have been here.  It can be easy to get bogged down in just how hard things are right now and forget all of the other great years you have had together.

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 Yet just a handful of family and friends have visited her and in fact more people have withdrawn from her than visited her since she was diagnosed with dementia seven years ago.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

Difficulties of Home Care

We now have hired caregivers in the house 24 hours a day, plus Mom is in hospice so we have nurses aids coming twice a week and a nurse once a week. They are all fantastic people and Kendal at Home is working hard to coordinate our caregivers from Caringtree and the aids and nurses from Hospice of the Western Reserve. The problem is that providing care in the home is difficult. Actually, providing good care at home or in an institution is difficult too, but for different reasons. So, let's talk about some of the issues in home health care and how to manage them.

The first thing is that hiring a caregiver from any of the home health agencies does not mean you are getting a medical professional. These caregivers are great but some may only know how to do tasks like grocery shop, cook, and clean. Others may only be companions. When your loved one gets sicker, like Mom, you really need to explain exactly what you need in order to get the right person. The problem is, most of us do not know what we need as we are not doctors or nurses ourselves. Fortunately my Dad is a doctor and so he notices when someone is feeding Mom too fast and she could aspirate or choke. Dad and I have both been in hospitals enough to know Mom needs to be turned every two hours to prevent breakdown of her skin (bed sores). She also needs fluids every few hours and must have her incontinence briefs changed. She has to be lifted out of the bed with people trained on how to use a Hoyer lift. She really needs constant supervision and medical aid for her tasks of daily living (toileting, cleaning, and eating) and these need to be done in a way that are safe for her which means you need medical training.

When a family calls a home health agency for help, we assume since this is their profession they can assess the situation and know exactly what needs to be done and the skill level needed for the caregivers. This is not true. And, that is not saying anything against the agency. I think what is happening is that home health care is new, there are few regulations, and they are figuring out how to get everyone trained for every possible situation within the federal regulations of what kind of care non-medical professionals can provide.

Hoyer lift in Mom's room. We now have a hospital bed for her.

So, here are some of the things I suggest you ask in order to get the right caregivers in your home. Help the home health agency figure out if you need a caregiver, nurses aid, or nurse because they are all different. A caregiver can feed someone who can not feed themselves, but they may not be trained to feed people who have difficulty swallowing and could aspirate like a nurse would be trained to do.

1. If your loved one can't feed or drink for themselves ask if the caregiver has been trained for proper feeding of people with swallowing difficulties. Does the caregiver know how to avoid aspiration of foods and liquids and what do they do if it happens or the person chokes?
2. If you have equipment in the home, will there be at least one caregiver on duty who knows how to use the equipment at all times. Have them show you how they use it, and practice on you, not your loved one. Mom got dropped out of the Hoyer a few times. 
3. Ask questions like: How often will you be changing her briefs? (should be every two hours or when soiled) How often will you turn and reposition him? (should be every two hours) How will you engage with her when she is non-responsive yet awake? (They should read to them, talk with them, play music for them, engage with them, not just let them sit in a chair or bed.)
4. Always watch all new caregivers perform all tasks before you leave them alone with your loved one. Each situation is different and your parent, friend, or child deserves personal care so make sure the care is tailored to their needs.
5. Always kindly ask for what you need and never feel like you ask too many questions. These agencies really want to care for your loved one well and with dignity but this really is a new area for all of us so they are open to feedback and working together with you.
6. Thank your caregivers when they do something well. Let the coordinator of the home health care agency know when the caregivers have gone above and beyond.
7. Don't panic! One or even a few mismatched caregivers does not mean you will never find the right ones. It takes an adjustment period but it will work out. 

Our experience has shown me that communication is key. We trust that the organizations we are working with are good people who really care about Mom, and that is important. If you feel they don't, then find a different group.  Fortunately for us, the people we are working with are great and trying to get Mom the best care possible. As we have found good matches for caregivers, some of them have brought music for Mom to listen to, talk with her, Mom has NO bed sores (this is amazing), they advocate on her behalf if they think a new caregiver might not be a good fit or if we all need more training on some new medical equipment.

While it may be stressful at times, our little army of people keeps talking in order to find out what is best. And every time families and home health agencies work together, the more we learn and can create a better system for everyone going forward.

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

"I Want to Go Home"

You often hear about people with dementia in nursing homes repeating over and over again "I want to go home." In everything I have read, this is assumed to happen because the nursing home is not the person's home so clearly they miss where they used to live, they don't understand why they are in a new place, and logically they want to go back home. However, is this really an issue of living in a nursing home and having dementia or is this a common problem with dementia in general no matter where the person lives?

Over the past few months, Mom has not recognized her home. She thinks where she lives is two houses instead of one. She often asks what happened to her house, says that she wants to be in her own house, and asks where her house is. When we ask her to describe what her house looks like, she describes the house she is currently living in so it is not like she is remembering a house from her childhood or another time in her life and so she does not see her current home as hers.

The only thing that has changed in her house is that what used to be the "great room" (a large living room) was sectioned off and a bathroom was added four years ago when we moved in and in anticipation of knowing Mom would not be able to use stairs in the future. However, the rest of the house looks the same. That change may explain why she thinks there are two houses, but she does not even feel like one of the two is her house.

For some people, what if dementia means you never feel like you are at home? Home is not just a physical place, but an emotional and spiritual one. If home is a place filled with your memories and hopefully a feeling of safety and with dementia you are losing your memories and everything feels unsafe, maybe there is no place you can call "home." Maybe when someone with dementia says "I want to go home" they are not asking for a physical place, but they are expressing how unsafe they feel. They may be telling us how unsure they are of life and everything they once knew.

Photo by Jeff Norris

This would not surprise me. When I was little and started having problems with anxiety and bipolar disorder when I was anxious and scared, I would rock back and forth and say to myself "I want to go home" yet I was in my own house. Home was safety, a feeling that the world was alright. I didn't feel that way so I was not at "home." I still say "I want to go home" when I am having a bad day.

Maybe the feeling of wanting to go home is common for those of us with certain brain illnesses because we are looking for emotional and spiritual comfort rather than an actual physical space we call home.

Blessings,

Rev. Katie

Accessible Scrapbooking Activity

We have been trying to create more Montessori based activities for Mom and we have noticed in a home care environment that it is hard to think of something new all the time. In fact, it is hard to even create one new activity a week. Also, we need some activities that anyone can do with Mom even if they are not familiar with the Montessori format.

So, I started my search for an activity that would fit the following criteria:

1. Follows Montessori principles of being fairly self explanatory, has a template to follow, and accessible to the skills Mom still has.
2.  Ongoing project that you could do multiple times a week but it not actually the same thing over and over again. Provides some variety.
3. Anyone can pick this up and do the activity with Mom. Easy to understand and follow for all.
4. Needs to be meaningful so Mom does not feel like she is just doing busywork. 

I am an avid scrapbooker and have been wanting to scrapbook with Mom her hundreds of photos but scrapbooking takes a lot of color coordination, cutting, pasting, writing, decorating, etc... and is really too complicated for Mom. However, I found a new scrapbooking style that is still pretty but much more simplified. It's called Project Life by Becky Higgins. Project Life is a simple scrapbooking system with coordinating journaling cards and patterned cards so you can just slip your photos and writing in the pockets and be done with your project. You can fit four 4x6 photos and four journaling blocks on each page. It was created to document your life week by week but as Becky says, you can use the system any way you want. So, I got the kit and set it up in a way that would work for Mom.

I labeled the elements of the kit with coordinating directions written out onto cards and put them into one of the pocketed page protectors so people can see exactly where everything goes.

Project Life adapted for use for a person with dementia.

Basically, you can take a few photos out of Mom's many boxes of pictures and set a few in front of her. You ask her what photo she would like to put in the album first and she can point to it. You can ask her what she knows about the photo or who is in it and write that on a journaling card. If she does not know, you just leave it blank. You then point to two of the photo pockets and ask "Would you like to put the photo here or here?" and Mom can choose where to put the photo. For the title on each page, you can take out two title pages and ask Mom which one she would like. Many of Mom's photos are 3x5 or 4x4 so I cut extra 4x6 colored cardstock so people can adhere the photo to a background, again giving Mom a choice of two colors and asking her to pick the one she likes the best. Sometimes Mom can figure out how to slip the photos and journaling into the pockets and sometimes she can't so we can put them in for her, but always give her the choice of where to put it.

Finished scrapbook page.

This is an activity that allows Mom to feel the feelings of the events in the photos even if she does not remember who is in them or what the picture is of. It gives her choice of where to put the photos and what colors to use in a simple way with a template of the pocket pages to follow. It is an ongoing activity since we have a ton of photos and it is repetitive but not the exact same thing each day. The directions are simple and color coded so anyone who comes over can do this activity with Mom.

I am very grateful to Becky Higgins for creating such a simple system that I could adapt for Mom who has dementia. This is a great meaningful activity for all of us to do together which will last for generations to come.

Blessings,

Rev. Katie