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

Last Christmas?

Darkest Night: West Shore Unitarian Universalist Church

Tonight at our church's Darkest Night Service (where we recognize not only the longest night of the year but also the fact that for many people have grief, sadness, and loss over the holidays), I lit a candle for Mom. I knew this Christmas would be hard for me since Mom is now in hospice and this may be her last Christmas with us, but I did not realize how much it affected me until I lit the candle and said out loud "This is for my Mom because this might be her last Christmas."

I don't know if this is technically Mom's last Christmas and now that I think about it, I feel like last year might have really been the "last" one. Last year was the last Christmas she was able to talk to her grandchildren, bake cookies, or open a gift. That was the last Christmas that she spent doing many of the things she always loved to do.

Every Christmas we would make dozens of Christmas cookies, her most famous being sugar cut outs and gingerbread. Then all of the kids and grand kids would gather together on the Saturday before Christmas to decorate the cookies. Last year she was able to help me make at least one of her Christmas cookies but tonight I made the dough for the gingerbread in my house by myself. No mother to make sure I was doing it right and to share the memory of making these cookies together that I have had for my whole life. I am taking the cookies over to Mom and Dad's tomorrow with my husband and son to decorate with Mom like we have always done, but it won't be the same. She can not move her hands and arms to help decorate or even hold a cookie. I know the important thing is really the time we spend together, not exactly what we are doing, but it is still just sad.

Decorated Christmas Cookies (We love our sugar crystals!)

It is difficult to have lost your parent but also have them physically here. You know their spirit is still here and you can see it in their eyes at times but you can't have a conversation with them, create things together, or do really anything together that you used to do.

We of course will make this the best Christmas we can for Mom and bring to her things that she loves about the season. Her grandchildren decorated her house and Christmas tree for her. We will make cookies together in the best way we can. We will eat together, let her see her grand kids open gifts, and laugh with her. But I have to admit that in all the joy I feel of her being here and being able to spend time with her, I am still sad.

Blessings,

Rev. Katie

Playful Activities Bring Joy to Dementia Patients

When my Dad and I talk about the activities we do with people with dementia every week with our foundation, the Carolyn L. Farrell Foundation for Brain Health, many people do not understand that playful activities are important to successful management of dementia.

Our activities are simple, based on Montessori methods, but some people think that this is "too childish." However, it is reality that people with dementia slowly loose cognitive abilities and have a more childlike brain. This may sound sad upon first glance, but really it means they are more free to be imaginative and have fun with playful activities like wooden blocks, stacking materials, and abstract art activities.

If someone likes an activity and it brings them joy, who are we to judge if it is "childish" or not worthwhile? 

One year old Jeffrey joyfully playing with his blocks.

My husband and I play the same videogames as our son. I love to paint, draw, and create with paper. As a family, we build things with the wooden blocks my Dad helped us make for our son for his first birthday. I think all of these activities are worthwhile because they bring us joy and bring us together as a family.

Here is a great blog post from the Alzheimer's Reading Room about the importance of play for people with dementia: How Important is Play for Alzheimer's Patients in the Late Stages? It is also a fantastic example of how caregivers can advocate for and insist on good care from nursing homes and in-home caregivers.

I encourage us all to be more imaginative, have more fun, and embrace the joy of our childhood spirit.

Blessings,

Rev. Katie

Service Dog Helping with Dementia

About four months ago we adopted a puppy who we are training to be my Psychiatirc Service Dog. While this training can take years, and our puppy Rosie is still just trying to learn how to contain her puppy energy, I find her to be an amazingly intuitive service dog. I have had many dogs over my lifetime but few have been so in tune with the emotional needs of the people around them as Rosie is, and she is just in the first few months of training.

Today we had a family party and we were able to have Mom over to our house. Rosie was in her crate for the beginning of the party and after everyone arrived, I let her out. We had about twenty people in the house and instead of saying "hello" to the people that were in the room she was in, Rosie instead went directly to see my Mom. A person she has only met twice.

Rosie was so attached to my Mom that my Aunt thought Rosie must have lived with my parents before we moved into our new house. She assumed Rosie knew Mom and missed her. Rosie was jumping up on my Mom, trying to get into the Broda chair with her. While this was not the best choice for Rosie because she was too hyper, her instincts were correct.

Rosie somehow knows to "ground" people when they are injured or hurting. This is a deep pressure therapy where the weight of the dog helps to calm the person who is anxious. Rosie's instinct is to lay herself on top of people to help make them feel safe and comforted. "Grounding" will be a Psychiatiric Service Dog task that Rosie will be able to do, gently, on command but right now she does it in her hyper puppy way becasuse she just wants to help other people.

Rosie "grounding" me.

I am continually amazed at the connection that animals have to us. I can't believe how Rosie knew, out of a houseful of twenty people who were in separate rooms, to go straight to the person who needed the most love and care. I felt so proud of Rosie today and her ability to help others. I also felt a great connection with Mom as she and I always cared for our dogs together throughout our lives. Rosie trying to take care of Mom was, for me, kind of another way that Mom and I are still connected despite the fog of dementia that keeps getting thicker and thicker. I am glad my puppy can see through the fog even better than most people can.

Blessings,

Rev. Katie

Freedom of the Mind

I was browsing around on Facebook and saw this quote from French writer and poet Antoine de Saint-Exupery: "I know but one freedom, and that is the freedom of the mind." I think this quote is from his story The Little Prince, which is a well loved classic.

This quote caught my eye and immediatly made me think of my Mom and other people with dementia. Actually it even made me think of those of us with mental illness. It is a reality for some of us that we do not have "freedom of the mind." 

Photo by cmartian on Flickr Creative Commons

We don't even know what really happens to the mind with dementia except that plaques build up in the brain and stop it from working- sometimes all of it, sometimes just part of it. One could argue that this is not freedom of the mind because you have lost the ability to use much of your mind. One could also argue that this is almost imprisonment of the mind becuase one of the things we are not sure of is if the person can think and inside, their brain functions just fine but it does not work well enough to send all the correct signals to get the infomation they want out of their brain.

This sounds like a scary idea, but I have to admit that sometimes I see this with Mom. I can see her brow furrow as she is thinking of something she wants to say or she is trying to move her legs and her brain just won't let her do it. If I look into her eyes, I still see her in there and I do wonder if she is experiencing some sort of imprisonment in her brain. I hate that this could be happening to her, and I actually know how it feels. Some of the medications I have taken for bipolar disorder disrupt cognitive functioning and I would know exactly what I wanted to say and be unable to, or I would try and control my arm and it would not do what I asked of it. It is a terrible experience.

While I think Antoine de Saint-Exupery's quote is prophetic in a way by saying that we always have that freedom, freedom of mind, and the idea is that no one can take that freedom away from you. I also think it is problematic because there are illnesses that can take that freedom away. And if this is the ultimate of all freedoms, what does that mean for those of us who do not have it? For me, I wonder if the one freedom I can think of is freedom of the spirit. I always see Mom's spirit even in the midst of dementia.

Blessings,

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.

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