Dementia Roller Coaster

Like many other illnesses, dementia does not progress in a linear fashion. One day your loved one may be unable to speak and the next day they are very chatty. One day they are so fatigued that you can barely wake them up to eat, the next day they can get out of bed on their own. It is a roller coaster ride of up's and down's.

As you may have read in my last post, Mom has progressed nearer to entering into end of life issues. Within a weeks time she became bed ridden, unable to hold up her own weight, rarely opened her eyes, and talked infrequently.

Today, Mom is a very different person. Her eyes were open the whole time I was there visiting. She looked brighter, had less Parkinson's shaking, and less anxiety. And, she was talking alot compared to where we were a day ago. Still she could not always get out what she was trying to say, but she could answer with more than just "yes" or "no" and was even using short sentences.

For Mom, and for many people with dementia, they will perk up and do better when they have company, particularly people they do not see on a daily basis. My brother and sister-in-law are in town and that really helped Mom perk up today. It is wonderful that she will have a few days of increased activity and fun while they are here. She is definitely on the up side of the roller coaster ride today.

Cedar Point Iron Dragon, Photo by Jeff Norris

With all the up's and down's, this roller coaster ride can be quite unnerving. You are never sure what each day holds and every time things get worse you don't know if it will stay that way. The other day I was worrying that I would never have increased communication with Mom, and that was scary. And yet today we were blessed with a great visit, which is wonderful. But is is also emotionally hard to handle. You can't prepare yourself for anything. Any increase in ability means you have more hope that your loved one will get better, yet you know in reality with dementia that even if you have a few months of better, eventually the bad will come back again. You feel like you barely get a breather before another severe drop in health occurs.

I also think of how hard the up's and down's must be on Mom as well. To be exhausted just trying to open your eyes and answer "yes" or "no" one day and then a few days later be able talk about how good lunch is. True, she has dementia and she probably does not technically remember how she was doing a day or two ago, but I do think on some level emotionally she feels the toll this takes on her. I can see how she is always just a bit unsure of how much she will be able to communicate with you each day. How badly she wants to open her eyes and speak on the days that she can't. Whether or not she remembers it, it has to be tiring for her.

Both the caregivers and the person with dementia need to find ways to ride the dementia roller coaster so it is as smooth as possible, enjoying the good days and making the best of the bad days. You can not read too much in to the bad days or the good days. I wish I could think that because Mom was doing better today that she will recover to where she was a month ago, but that is probably not going to happen. However, that does not mean I won't enjoy these times with her as much as I can.

Blessings,

Rev. Katie

Rules Don't Apply

When I was little I learned not to drink milk from my cereal bowl, I learned to eat neatly and not drop my food, I learned not to play with my food, and I learned that I had to eat what was put in front of me. I learned all the things most of us teach our children.

Honey banana rice with pork.

So the other day when my Mom mixed rice, bananas, and honey together at dinner, I was reminded of how many of those rules do not apply anymore. Mom just commented yesterday morning, after she had drunk the milk out of her cereal bowl, "Remember when I taught you not to drink milk from your bowl?" That memory made her smile. It was kind of funny for us to think of how she now does many of the things she taught us not to do. Her hands shake from the Parkinson's so she is sometimes a messy eater and drops her food. She does not always want to eat what is put in front of her so we make her something else.

What makes me really happy though is that none of us care about the rules. Who cares if she makes odd food pairings or has a messy spot at the table? She is still the beautiful person she has always been. She is still important and valued. It does not matter that the rules no longer apply.

It can be hard for us to watch these changes because these rules are often the ones that people believe split adults from children. They are a sign of ability and health. At first it made me sad to see Mom dropping her food, but that is really just my fear over the progression of her disease, not that it actually matters if she drops the food. As we see these changes, we need to remember that our loved on with dementia is still valued and important. The changes do not mean we are losing our loved one,  but that they are transitioning into a new phase in their life that we have the privilege to be with them for the journey.

Blessings,

Rev. Katie

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

Quote of the Day

"Respond to the emotion, not the behavior. If your loved one keeps asking about a certain family member, he or she may need reassurance that this person is healthy and safe. Avoid trying to reason with the patient, this may often lead to frustration for both of you, because he or she may be unable to follow lengthy explanations."

- Understanding Behavioral Changes in Dementia