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

The Carolyn L. Farrell Foundation in the News

Photo by Gus Chan/The Plain Dealer

The Plain Dealer, the local Cleveland, Ohio newspaper, just did an article about the Carolyn L. Farrell Foundation for Brain Health and the dementia program we run every Wednesday!

Read about it HERE. 

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

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