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.

Dealing With "Dementia Loss"

Mom has progressed so quickly with her dementia in the past three months, and as the holidays are approaching I am thinking about how to handle the holidays with a loss. By loss I mean what I would call "dementia loss" which is not death of the body but loss of relationship with a person, loss of ability, and loss of communication. 

Last year she could make her famous Christmas cookies with me. Last year she could give advice on cooking the Thanksgiving turkey. Last year she could walk, talk, feed herself, and go to holiday events like our annual extended family trip to the West Side Market. This year is so different. We can't really chit chat about tips on making stuffing, or walk through the Market together and get the mincemeat for the pie. We will have to feed her her holiday dinner.

Making Christmas cookies with Mom last year. Christmas 2011.

Mom is still here in many ways and often I see glimpses of her personality again when she laughs at things we say or when she surprisingly comes out with great one line zingers when she looked like she was staring off into space. However, she is not here as well. While I feel blessed when she connects with us through smiles and simple words, we can no longer have conversations together. I can't ask her for advice on how to make a fantastic holiday like she always did. It is devastating to be with your own mother and never have an actual conversation. Every time I am cooking and mess something up, I go to the phone to call her, but then realize I can't. I try to embrace what we still have, but I do realize how much we have lost.

I try not to think of all of the things we have lost because that makes me too sad. I try instead to think of ways to still include Mom in what she always loved so she knows we care about her and want to help her do what she likes. 

Mom can not really move her arms and hands anymore so I can't make cookies with her this year. Instead I can make the cookies while she sits at the table and I can talk to her while I do it. She can not go to the West Side Market but at least our house is accessible enough so that she can come for a few hours of the party in her Broda chair. We can't decorate the Christmas tree together, but I can bring out the ornaments and talk to her about them as my son, husband, Dad, and I hang them on the tree.

This holiday season will be hard for us like it is for so many people who have their first holiday after a loss. You think of all the things your loved one would have done or would have participated in. You see the glaring holes that are left where your loved one used to be. The thing that is so hard about "dementia loss" is that you keep losing the person over and over again and there is not really any closure. This year is a significant loss and next year if we have lost Mom in body as well, then we have another holiday season of grief and loss on another level.

Blessings to you during the holiday season,

Rev. Katie

The Power of Friendship

About nine years ago, my Mom's friend Sue started a knitting group. Mom and I have been part of the "Cultured Purls" ever since. I even went knitting the night before I was induced and the knitters were probably some of the first people my son ever met. The group has met almost every Thursday night for the past nine years. Three years ago when Mom's dementia made it so she could no longer knit, they still welcomed her in the group anyway. I think she took the same ball of yarn and needles with her every week for at least a year and her loving friend Sue (our knitting leader) always helped her knit a few stitches each night.

Unfortunately in the last year and a half, Sue got sick, Mom got worse, and the knitters met intermittently, but they always took care of each other. The knitters have been meeting at Mom and Dad's house now for a while and this Thursday night we got together for the first time after Sue passed away this Monday.

When Dad told Mom that Sue died, many might think she would not understand, but she did and it made her sad. As we sat around the table talking on Thursday, Mom said to me "feels sad" and I know she knew that while we were reminiscing about Sue and telling fun stories, people were sad at the same time. Even in the midst of this loss, the girls made my Mom laugh and come alive in a way that she is not able to do most of the day. Just look at Mom's face in the photo below, she is smiling and happy as we laugh about some good times in our knitting group. Sue was always looking on the bright side of things and so her spirit was definitely there helping us all have fun together.

Pat, Gretty, Jackie, and Mom

This group of women, this group of friends, have been through so much and they take care of each other no matter what is going on. They are some of the few people who can make Mom smile and bring out her personality, which is never lost, just heavily covered in the fog of dementia. They talk to her instead of talk around her and they have never treated her different because of her dementia. Mom feels the emotions in the room and knows her friends love her. Fortunately these friends have allowed Mom to experience joy, happiness, and love on a regular basis.

Never underestimate the power of friendship to beat dementia!

Chris and the rest of the girls.

Thank you to the Cultured Purls for being so amazing and may we continue to carry on Sue's legacy of knitting, love, optimism, friendship, fearless determination, and joy.

Blessings,

Rev. Katie

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