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

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

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

Socialization is Treatment

At times it is hard for people outside of our home to understand some of what we do as caregivers for my mom. One topic that we get quite a few comments about is how we, in their opinion, "force" mom to do things. Go out to lunch, go to parties, go to church, exercise, eat healthy, go to dementia groups, etc... In their opinion we are not listening to Mom and forcing her to do things she does not want to do. They think this because sometimes that is what Mom tells them we are doing. Which logically would lead most people to believe that we are indeed forcing her, and that is a bad thing.


Dad and I were just talking about this the other day and he was wondering why people do not understand that while Mom often says she does not want to do things, she does enjoy the time out of the house. What people also don't realize is if we did not get her out of the house, she would sleep almost 24 hours a day, and that would be terrible for her body, mind and spirit. Dad wonders why people don't understand that socialization is one of Mom's treatments, and that even though Mom says she does not like it, when she is out with others, that is one of the only times she is actually happy and engaged, like yesterday at TimeSlips, our storytelling group. She had a great time and was excited about participating, but when we asked her about it later, she said she was also miserable. People don't understand the complexity of this issue, because many people do not understand depression.

I completely understand where Mom is coming from, and I understand why even though she enjoys things, she is still miserable, which is all the more reason not to allow her to sit in bed all day. Mom is depressed, as happens with many people with dementia. I understand how she feels because I am often depressed because of my bipolar disorder. I do the exact same thing she does. I blame those closest to me and whatever we do together for my misery because that is part of my illness. I never really understood that this blame was actually a symptom until I did a lot of reading about mental illness. Due to my treatment, I have done a lot of work to be able to recognize and stop when I am blaming others, but Mom is unable to do such processing, and that is fine with us.

For both Mom and me, one of the best treatments for our illnesses is socialization. In the moment it gives us a bit of happiness in the midst of depression. It shows us we are loved and cared for. It brings light to our life. It won't fix us, and we may still feel miserable when we are done, but some joy is better than nothing. It is nourishment for the soul which should not be discounted.

I wish others could understand that us involving Mom in life is actually a very compassionate and caring thing to do. If not, she would stay depressed in bed instead of having some enjoyable time of the day. For those wondering, we have tried to treat the depression with many medicines, and none have worked. Apparently this is especially common in people with dementia as written about in this article which says Alzheimer's patients are not helped by antidepressants.

The treatment of many diseases of the brain means normal, rational rules and assumptions don't apply. We have done our research, talked to Mom's doctors, who say socialization is essential, and we are doing everything we can to help Mom have the best quality of life she can, because she deserves nothing less.

Blessings,

Rev. Katie