Shutting Down for the Holidays

During the holidays we try to make sure our loved one with dementia is included in the festivities and we carry on traditions we know are important to them. We have big parties, help them open gifts, and make foods that they love. However, sometimes it seems like our loved one is not responding or even is "not there anymore." This can be hard for us to handle because we really want to create something that our loved one enjoys and we want them to know they are still part of the family.

What has become clear to me though through being with Mom is that while socialization helps people with dementia, too many people can be difficult for them to handle. When I am alone with Mom or there are just a few of us with her, she often keeps her eyes open and talks a bit. Whenever we are in a big group though, Mom has been what seems to be mostly non-responsive. She sits with her eyes closed and does not talk. It seems like she is "not there anymore" and it can be very sad to watch. However, if I pay close attention, I notice that she has really just shut everything down and she listens, but it is too much for her to repond and be engaged. I can understand that. It takes a lot to interact with a large group of people, especially when your brain gets easily overloaded by too much sensory stimulation. I know Mom is still here even when she looks like she is not because if it gets too loud, she will all of the sudden open her eyes and say very clearly "be quiet." Then at dinner, she may not open her eyes or talk, but if you tell her you have food for her and you are going to give her a piece of a cookie, she opens her mouth and eats.

Katie & Mom at our cookie decorating party. Mom was not responsive because we had a lot of people at the house.

For most of the people with dementia I have worked with, not just with Mom, I have found that sometimes life is just too much for them to handle in the moment and they retreat into themselves in order to get through the situation they are in. They are listening and they can feel the love and emotion that is in the room. They are still here, but they just can not be present with us in the way that we wish they could be.

Keeping big family gatherings is fine, but we might also want to make sure to take a few minutes in the next month for some one-on-one time with our loved one so we can create a space that is more quiet and enables them to be more responsive. We especially need to consider out-of-town family members and make some space for them, not during a large family event, to have alone time with their loved one with dementia.

Blessings,

Rev. Katie

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

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

Communication Breakthrough

Mom has been having a harder and harder time communicating with us. She stumbles over words, knows what she wants to say and just can't think of the words she needs.

We may be at the dinner table and she wants ketchup for her hamburger, but can't remember the word ketchup. Or she read a story in the newspaper and wants to tell us about it but can't remember what the story said. However, through reading more about the TimeSlips program and alternative, more creative ways to communicate with dementia patients, Dad and I started doing something different.

When Mom is trying to tell us something and she can't find the words she needs, we ask her to either describe it or tell us a story. For the ketchup example, we usually know when she is asking for an item so we ask her describe what the item looks like or what it does. If she is trying to remember the story she read in the newspaper, we ask her to tell us a story. Interestingly in those situations, she tells us a story of something that she remembers from when she was younger but is similar in topic or some way to the current event she is trying to talk about. If we have read the paper or at least have seen the headlines, we can usually guess what she is trying to tell us by connecting her older story to something current that has similarities.

So, if you are talking to someone with dementia and they are having a hard time communicating with you, ask them to describe what they are thinking of, or tell you a story instead. It works wonders by letting you both communicate better, but it also relieves some of the embarrassment of the person with dementia. This way you focus not on what they can't remember and how awkward they sound, and more on what wisdom they wish to share with you.

Blessings,

Rev. Katie