Where are the Dogs?

Many times a day, Mom asks us “Where are the dogs?” This question used to drive me crazy. I felt like every five seconds I was looking for the dogs, calling them in from the back yard, looking for them in the basement. I would tell Mom where the dogs are and then try to tell her all the reasons she does not need to worry about them.

Finally I realized that Mom was not really asking me where the dogs are. I had to stop responding to the question and respond to the emotion behind the question.

Mom is always wondering where the dogs are, where my son is, where Dad is, where my husband is. What she is really asking is if we are all safe. Mom loves us and just wants to know we are all ok. She was a stay at home mother, so she was always keeping track of her five kids, husband, and two dogs. That is who she is and it gives her great anxiety not knowing if we are safe.

So now the questions, “Where are the dogs?” and “Where is Jeffrey?” do not bother me anymore. What Mom is really saying is “I love you.” So we will search for and find the dogs, usually sleeping on the couch. And we will make more of an effort to communicate with Mom about where we are. We can write our location on the dry erase board in her bedroom so she always knows where we are and who is picking up Jeffrey from school.

People with dementia often ask repetitive questions or make repetitive claims about things. Often times they repeat themselves not because they can’t remember, which is our first assumption, but because they have a recurring feeling. Questions about the location of a person are often not actually questions, but an expression of the emotion that they care about someone. Claims that someone stole an item (a common statement made by people with dementia) may not be an accusation, but really an expression of a feeling of loss. Loss of ability or control.

Listening to the emotion and not just the words is a practice that can help us in all areas of our life, not just with our loved ones with dementia. There is usually an emotion driving what we are saying and if we can get to that emotion, we can get to the heart of the matter.

Blessings,

Rev. Katie

Quote of the Day

"Validate the feeling behind the words. Even if you are unable to understand what is being communicated, look at the non-verbal signs of emotion. Is she upset? Joyful? Afraid? Respond accordingly providing lots of affection and comfort."

- Understanding Behavioral Changes in Dementia

When Are You Moving Out?

Probably at least once a month someone asks my husband and/or me if we are moving. When are we going to get a house? A year ago when we told people that we were going to move in with my parents, many people either thought we had serious money problems or we were just plain crazy.

I know what we are doing is counter-cultural for many Americans. We have voluntarily chosen to move in with my parents, because we want to live together. We don’t need to do it for financial or child-care reasons. My parents are both vocal about the fact that this is our house now, as a family. We pay rent, like we paid our mortgage.

So, why did we chose to do this? I chose to do this because dealing with this illness is not something Mom and Dad should have to do alone. My husband and I were fortunate enough to have the option of moving and helping with Mom’s care, and we wanted to use the blessings we have in life to their fullest capacity. And frankly, I did it because I thought if I die tomorrow, I would regret that I did not spend more time with Mom and Dad and help them. I am their daughter, Mom and Dad cared for me, and I want to do the same for them. We also wanted our son to know his grandparents and know what it is like to live in a multigenerational community.

It is even more surprising to people that my husband actually enjoys and wants to be living in his in-law’s house. So, why does he do it? I will let him tell you:

“It is a way of showing that I love my in-laws. By being with them even when it is not a fun dinner or special occasion, it shows that I love them in a very real way. Like most people, we say that family is important, but we want our actions to actually match our words. We want Mom to spend as much of her life as possible living at home with family around her. I know that Dad can’t care for Mom alone. He needs emotional support and he needs the time to take care of himself. By being here we can make sure he has that time.”

Living together in this way requires a different kind of relationship, a real relationship. It means that we communicate and talk to each other. We have to tell each other what is working and what is not or we will all be miserable. For this kind of community living to work, we have to be honest and vulnerable and that is not always easy. Our relationship is about constantly re-committing to each other. We realize that we can’t make it work all at once, we have to go back and make it work over and over again.

Living in this house also means we have a lot of fun. We laugh all the time. Mom and I watch murder mysteries together. Dad, Jeff, Jeffrey and I bike together, often with friends. Mom and Jeffrey try to scare each other all day (it’s an on-going joke with them). We make spaghetti tacos for dinner, we burn pizza and the fire trucks arrive.

So, we won’t move out unless Mom and Dad ask us to, or somehow this living arrangement becomes a safety issue, particularly for our son.

Living together is fun, sad, frustrating, scary, boring, exciting, exhausting, supportive, caring, and loving. It is just life, in all of it’s ups and downs. We are just choosing not to live it alone.

Blessings,

Rev. Katie

Quote of the Day

“A diagnosis of Alzheimer's terrifies me. However, my family and friends act as though I have the flu. I've sent them sites from the web, pamphlets, books, etc. No one reads them. No one talks to me about my feelings.”

- Alzheimer's Association, Town Hall Meetings Report

"That Sucks"

At my first retail job I remember getting reprimanded by my boss because I used the term “that sucks” with a customer who had told me some story with an unfortunate ending. Ever since that time, I have known how crass that phrase sounds and I try not to use it. However, there are times in life where this is the only phrase that can capture what someone is going through.

So, what I have to say today is “dementia sucks” and often everything associated with it sucks. Who taught me that? My Mom. My Mom, who is always proper and well spoken says it sucks. I love when she does that, when she is totally honest about what is going on.

Mom has been extremely fatigued for the past few years, and the fatigue is getting worse. On most days Mom is up for a few hours in the morning, sleeps all day, and is up again from late afternoon until after dinner. She is SO tired. Today she asked me what could be making her so tired, and I said it is just part of the disease, to which she replied “that sucks!”

I hate that so much of the dementia and parkinsonism is just something we can not change or make better. We can’t give her medicine to make her less tired (trust me, we have tried.) No medicine completely gets rid of the tremors, medication has not helped her memory or cognition. The random back pain and other skeletal discomforts, which we have now learned are common in parkinsonism, can not be stopped. For the most part, we just can’t fix any of it, and all we can do is manage it.

Management means that most days Mom will sleep all day. Exercise and diet do help with cognition and the Parkinson’s tremors, so we try to keep up with that. Mom tries to socialize because that is fun for her and decreases depression. We repeat things for her and help her find the words she can not remember. We manage the best we can because in the end, dementia sucks and there is not much we can do about it. Well, at least we can be honest with each other and laugh about it when we can.

Blessings,

Rev. Katie

Quote of the Day

An Alzheimer's patient says of the day their doctor diagnosed them with Alzheimer's:

"I'd never seen a doctor so disappointed to tell someone they didn’t have a brain tumor.”

- Alzheimer's Association, Town Hall Meetings Report

Dementia Abandonment

There is a common occurrence in the life of the dementia patient, that of abandonment by friends and family. Often when someone is diagnosed with dementia, people start to pull away. Friends no longer ask you to go out to lunch, family members stop calling, people stop spending time with you.

This is a sad and confusing occurrence, but it happens often for a loving reason. When friends and family start to pull away from their loved one with dementia, it is often because of the underlying love they have for them. It is hard for a person to watch someone they love get sick. People decrease contact because they are afraid. Sometimes the best way they know to handle the situation without causing emotional pain to themselves, is to deny that the person is sick. Or maybe they are scared because they just don’t know how to communicate with someone with cognitive difficulties.

I can understand that. Sometimes I want to leave. Sometimes it is scary and sad and heart wrenching to see Mom as she is right now. It is sad to eat dinner with her and see food fall off her fork when her tremors are bad. It was scary when Mom used to dump out all her medication which Dad had organized for her, and try to re-organize it. Sometimes it’s frustrating on days when Mom is more confused to have to tell her the same thing over and over again. For me though, I am more scared of the day when she might not recognize me or when we can’t communicate at all. I want to spend as much time with her as I can to maximize the good times because, sadly, things will only get worse, not better.

Abandonment happens with many illnesses. I often saw this with patients in the hospital, particularly with kids. Many times a critically ill child would get a visit from their parents once a week, or less.

While it is scary for us, it is also scary and sad for the person with the illness. I asked Mom a few days ago what helps make her feel better and she said she feels better when she visits with friends. She is happy when she sees her kids and grandchildren, or when she get’s to talk to them on the phone. Community is a way to help deal with dementia.

Everyone deals with tragedy in different ways. By writing this I am hoping people know it is ok to be scared, sad, and angry about your loved one’s illness. If you are scared, talk to the rest of us who are in a similar situation, because we are scared too. I hope people with dementia know that even though some people abandon you, which is very painful, it is not your fault they have done so. Most likely it has happened because their love for you brings with it a lot of sadness and fear. I hope the family and friends who are able to keep in contact know what a wonderful, beautiful, and life-saving gift you are giving.

We all do the best we can and if we all keep working together as a community, we will be able to support our loved ones with dementia and support each other.

Blessings,

Rev. Katie