Honor a Loved One or Caregiver

The Cleveland Chapter of the Alzheimer's Association is holding it's annual dinner, A Celebration of Hope, on Thursday May 5, 2011. Last year the dinner raised over $312,000 for the cause. Please come to the dinner if you can (click on the link above.)

Also, this year we have started something new for the dinner's program book (which over 500 people see), and the Cleveland Chapter's website. You can purchase a special tribute listing or a business card size tribute to honor your loved one with dementia or to thank a caregiver. These tributes will be posted online and a copy will be sent to you so even if you can't come to the dinner, everyone can see your tribute. This is a great way to honor those living with and caring for this disease, and help raise funds for the Alzheimer's Association. Please go to: http://tinyurl.com/alztribute to purchase your tribute today!

I hope to see you at the dinner as well!

Blessings,

Rev. Katie

Difficult Times

We have been dealing with a family emergency for the past week or so, one that will be going on for a long time it seems. I wanted to share with you our experience so far of dealing with a family emergency while caring for someone with dementia.  

At first, the adrenaline rush of dealing with a sudden tragedy made Mom more focused and better able to do things she was not able to do before. For instance, Mom cooked us breakfast on the first morning of the emergency.

Then, the adrenaline rush wore off and Mom became overwhelmed by the magnitude of the situation. She has become severely fatigued and it is even hard to wake her at times. The fatigue and emotional stress has made her at times unable to do anything, even though she wants to care for her loved one who is ill.

For the first few days, Mom went over the facts of the event again and again. She would suddenly become scared that maybe she forgot to give us information she just remembered, but which was really a day or so old. So, for a bit it seemed that her short-term memory was a bit worse, but only as it relates to this one subject. This seems to have lessened as the week has progressed.

We have needed to increase our care of Mom. We are usually able to leave Mom on her own, but one day she was so shaky we felt she was at too much risk of falling to leave her on her own.

It is very important to let Mom care for her loved one as much as she can each day, but we realize that means she is not functional the rest of the time. We just have to make sure she eats regularly and gets back to some of her routine activities, like swimming with her friend in the morning.

As a caregiver, situations like this might make you more stressed than before. At least it does for me, and it seems like everyone in the house is a bit worn out right now. We want to care for Mom as well as our other family member and their family. So, if you are in a similar situation, remember to talk to friends, cut back a bit on work responsibilities if you can, and ask for help with caring for your loved one with dementia if you want to get out on your own for a bit. 

Blessings,

Rev. Katie

Six-Year-Old Caregiver

Mom, Jeffrey & Jeff cooking together.

At dinner tonight, my six year old son said “Mommy, I think I found a place that can help Beep (what he calls my mom, his grandmother).”

He told me that when he was watching TV, an add came on for “a place that helps people with Alzheimer’s and other forms of dementia.” He ran around the house looking for a piece of paper to write down the phone number for us. He could not find anything to write with but said he would keep a notepad and pencil downstairs at the TV so he can write down the information next time.
   
He said “I know it won’t cure her, but I think they can at least help Beep.”
   
It amazed all of us to see how much he cares about Mom. On his own he took the initiative to try and get more information about resources for her. It was especially important for Mom to see Jeffrey choosing to be so involved in her care.
   
I was in awe of the language Jeffrey used in explaining dementia and how he understood that this is not a curable disease, but one that can be helped. I got teary-eyed hearing my son speak so knowledgeably, and caring so much for Mom.
  
In our everyday life, it is hard to see how all of this is impacting him. How much he understands and how much he even wants to help. He did not really chose to be a caregiver, so we try not to pressure him into that role. But I realize now that he does see himself as a caregiver, and he will discover his own ways to contribute to Mom’s care.
   
Children pay attention and listen to far more than we realize. If we just give them time to express what they know and how they feel, they will teach us amazing lessons about life and love.

Blessings,

Rev. Katie

Taking on Alzheimer's: A National Conversation at Home- Panel Discussion

I will be part of a panel discussion put on by the Daughter's Club of the Alzheimer's Association Cleveland Area Chapter. This will be a discussion of The Shriver Report featuring local Ohio women whose lives have been dramatically impacted by the disease.

The panelists are:

Jan Culver, Chief Fiduciary Officer and Director of Trust, KeyBank and Caregiver

Rev. Katie Norris, Caregiver and Blogger 

Patti Girard, Former Nurse Living with Early Onset Alzheimer's Disease

Doreen Kearney, RN and Cleveland Area Chapter Care Consultant

Please join us for brunch and discussion on Saturday April 9, 2011. Here is a link for more information and to register: Taking on Alzheimer's: A National Conversation at Home.

Here is a video about The Shriver Report: Shriver Report Gives a Face to Alzheimer's.

"That's Mommy's Job"

We are having a bit of a hard time with the relationship between our son Jeffrey and my Mom. My Mom is always asking Jeffrey if he wants her to make him breakfast, fill his plate at dinner, and do other things to help take care of him. Jeffrey almost always says “no.” My Mom then feels bad, and thinks Jeffrey does not like her.

I talked to Jeffrey about this, and it is not that he does not like her. He does not want my Mom to start taking care of him because “that’s Mommy’s job.”

Jeffrey and Mommy. Photo by Jeff Norris.

I can see how hard it must be for him to move into a house with two more adults and want to keep the distinction between parents and grandparents. He wants to play games with my Mom and Dad and spend time with them, but he does not want them to care for him. He grew up for five years with Jeff and me as his only two adults, and he wants to make sure that he keeps a special relationship with us, as his parents. I think he also wants that special, fun, relationship that grandparents normally have with their grandkids.

We have explained to him that just because my Mom might do something Jeff and I normally do, that does not mean she would take our place. He understands that, but still  just wants us to take care of him.

My Mom can’t understand that just because Jeffrey turns down breakfast, that doesn’t mean he dislikes her. Jeffrey is not at the point where he can be comfortable with other people doing the things he considers his parents job to do. It makes him sad and scared to think someone else might take his parents place.

I could force Jeffrey to just say “yes” to Mom, which we have tried, but he gets very upset and cries. We have tried to encourage Mom to do the things Jeffrey likes to do with her, like play games. She does participate in those activities, but in her mind, those activities do not have value and do not show love.

How do we honor both of their emotional needs without hurting either one of them? I wish I had a good answer, but I don’t right now.

Am I In Denial?

I keep reading as much as I can about how to care for someone with dementia. The more I read though, the more I think much of it does not or should not apply to Mom. In fact, some of it I think is possibly morally wrong.

For instance, I just read an article called “Introducing In-Home Care When Your Loved One Says ‘No.’” The article is a list of suggestions. Upon first reading it, I felt like the title of the article should have been “8 Ways To Lie To Your Loved One With Dementia.” The list included suggestions of telling the person with dementia that the home health aid is actually a friend of yours, or that the service is free (even if it is not), or you are the one who needs help, or that the help it is only temporary (because if the person with dementia forgets you said this, then the next time the person comes in, it seems new, thus temporary.) I see this same approach taken in other places as well.

One adult daycare I know of has dementia patients fold towels, only to take the towels into another room, dump them out, and bring the towels back to have the people fold them again. These are the things that I see as almost morally wrong. Lying, treating an adult like a child. The first principle of my Unitarian Universalist faith is that every person has inherent worth and dignity. These suggestions for caring for someone with dementia seem, to me, to be taking away their inherent worth and dignity.

Or am I wrong? Am I just in denial?

What if the best way to care for Mom is to lie sometimes? When she gets to the point where she does not remember someone from one visit to the next, is it ok to lie and say they are my friend, when they are really her caregiver? What if recognizing Mom’s inherent worth and dignity means recognizing the reality of her situation and who she is now, rather than treating her like she is the same person she was ten years ago?

We recognize that children have different stages in their mental capacity. We do not expect small children to make adult decisions, that would be wrong, because they are not capable of such decisions. Sometimes we lie to our kids to protect them. Kids do the same task over and over again and they have fun doing it. To me it sounds wrong to treat an adult like a child, but if in dementia, a person’s mind is like a child’s, might it be more respectful to treat them as they are, not as we wish they were?

I don’t really know where I stand on this issue, because I am too close to it. This is my mom I am talking about. And, she is not far enough along in her dementia to not understand what is going on around her, so some of these examples, like the towel folding, would not apply to her. However, I am not a professional trained in how to care for people with dementia. If most of these well respected programs have such suggestions, maybe they are right. Maybe I need to be more open minded and change my ideas on what is right and wrong.

And, frankly, the other reason I do not like these suggestions, is because I can tell some of them would work. Even now, just a small white lie, or lie of omission, could avoid a whole day of anxiety for Mom. And if they work, that makes my life easier. And if it makes my life easier, I feel guilty. Should my life be made easier when Mom’s is so hard? Am I taking the easy way out? But then again, can I let my guilt get in the way of what actually might make Mom happier?

I have no answers on this topic and I don’t really know what I will do until I am presented with the situation. I just hope I make decisions that respect Mom.

Blessings,

Rev. Katie