Happy Mother's Day?

I went to the mall yesterday, which in hind site I realize was a bad idea on the day before Mother's Day. The mall was packed with shoppers, full of sales associates shoving perfume samples at me, big pink signs with roses and fancy script saying "Happy Mother's Day," and tons of sales people. I tried to walk through the mall quickly with my head down, but if I looked at anything, unfortunately, a sales associates would catch my eye and ask: "Are you looking for something for your Mother?" When I would say "Not today" they would reply, "Well, I can help you find something for her" or "Don't forget to get her something before tomorrow."

I have never really been bothered by the holiday push. I used to work in retail and I know they only do it because it's their job and the stores focus on the holiday because it makes a lot of money. I tend to be able to ignore it even when a holiday does not feel joyous to me. But this year I had a harder time with the Mother's Day push than usual. I felt angry, sad, and like I could cry right there in Macy's.

I really felt like just looking someone straight in they eye and saying "Well, my Mom is confined to her bed, can't move her limbs, dying from dementia. She can not pick anything up to touch it, she does not need new clothes, she won't use new jewelry, her sense of smell is low and she is not really going to use the Joy perfume we would usually chip in to buy her, she rarely talks, can't read, and doesn't open her eyes very often to look at things. So, can you tell me what you might have in the store that I can buy for her?"

That would have been really rude, and I never would have done that. However, just thinking it made me realize that last year I would have been able to easily buy my Mom something from the mall. I still would have needed to accommodate for her dementia and Parkinson's but I could have found her something pretty she would have liked. Now it is just not the same. My Mom is still alive yet the ways in which I would have cared for her before, or the things I would have given her previously do not apply. She is not gone, but some things are lost. I did not know of anyone who would really understand what I was going through except my best friend who's mother had died a few years ago. She would be the only one I could ask how to get through Mother's Day, even though my Mom is still alive. My friend would understand what I meant, and she did. She powers through the day like all of us who's mothers are either sick, dead, absent, or even people who have abusive mothers. You just get through the day the best you can and make sure you have people you can call on when you are sad and grieving.

Flowers for Mom. Photo by Jeff Norris.

I am a firm believer that people with dementia are still here and they can still enjoy things. I try to remember that every day. But that does not mean we do not grieve over the things they can no longer do or miss how we would have interacted with them before they got dementia. Holidays tend to remind us of this grief when the rest of the year we try and ignore it and make the best of the situation we are in.

It would be bad ministry for me to say that you do not grieve for your loved one with dementia even when they are still alive. Sadness and grief is part of the process and I truly think it helps us heal and move on to be able to create meaningful time together, rather than getting stuck by trying to deny the illness is there.

So, I am sad about Mother's Day and for the parts of Mom that are not here anymore, but we still find ways to celebrate with her, bring joy into her life, and access the part of her that is still here- her soul.

My siblings and I will be going to dinner at Mom and Dad's tonight. Mom loves family and good food. Mom also likes beautiful things and color, and while I could get her something like a pretty picture or statue, that would make the house more cluttered, which does not help people with dementia. So, my husband, son and I made her some flowers out of watercolors and paper doilies which are made with love, pretty for her to look at, but can be thrown away after a while and do not add to clutter and confusion in the house.  Of course though, her favorite gift will be the gift of time we spend with her, which is way better than the perfume, purses, and jewelry at the mall.

Blessings,

Rev. Katie

Last Christmas?

Darkest Night: West Shore Unitarian Universalist Church

Tonight at our church's Darkest Night Service (where we recognize not only the longest night of the year but also the fact that for many people have grief, sadness, and loss over the holidays), I lit a candle for Mom. I knew this Christmas would be hard for me since Mom is now in hospice and this may be her last Christmas with us, but I did not realize how much it affected me until I lit the candle and said out loud "This is for my Mom because this might be her last Christmas."

I don't know if this is technically Mom's last Christmas and now that I think about it, I feel like last year might have really been the "last" one. Last year was the last Christmas she was able to talk to her grandchildren, bake cookies, or open a gift. That was the last Christmas that she spent doing many of the things she always loved to do.

Every Christmas we would make dozens of Christmas cookies, her most famous being sugar cut outs and gingerbread. Then all of the kids and grand kids would gather together on the Saturday before Christmas to decorate the cookies. Last year she was able to help me make at least one of her Christmas cookies but tonight I made the dough for the gingerbread in my house by myself. No mother to make sure I was doing it right and to share the memory of making these cookies together that I have had for my whole life. I am taking the cookies over to Mom and Dad's tomorrow with my husband and son to decorate with Mom like we have always done, but it won't be the same. She can not move her hands and arms to help decorate or even hold a cookie. I know the important thing is really the time we spend together, not exactly what we are doing, but it is still just sad.

Decorated Christmas Cookies (We love our sugar crystals!)

It is difficult to have lost your parent but also have them physically here. You know their spirit is still here and you can see it in their eyes at times but you can't have a conversation with them, create things together, or do really anything together that you used to do.

We of course will make this the best Christmas we can for Mom and bring to her things that she loves about the season. Her grandchildren decorated her house and Christmas tree for her. We will make cookies together in the best way we can. We will eat together, let her see her grand kids open gifts, and laugh with her. But I have to admit that in all the joy I feel of her being here and being able to spend time with her, I am still sad.

Blessings,

Rev. Katie

Forgetting the Hat

The Silly Hat

It was “silly hat day” at my son’s school on Friday. He wore a great hat we bought in New Orleans full of bright colors and bells. It was sitting on the counter and Mom asked about the hat. She put it on and we laughed about how great it looked on her. Then she walked over to get something from the pantry, turned around and said “Who’s hat is this?” And we explained it all again.

Mom has not been at the stage where her short term memory has been a problem very often. In fact, this was the first time it was glaringly obvious that her dementia is entering a stage we have not been in yet. If she has forgotten things before, when we tell her again, she often remembers our original conversation. Not so this time, the hat was completely new to her.

Over the past few weeks, I have noticed things getting much worse for Mom. One of the hard things about this illness is just when you have started to process and deal with the severity of it, it changes. I had a good amount of education around grief and loss in seminary and in my chaplaincy training. Much of that talks about the stages of grief, such as denial, anger, bargaining, depression, and acceptance. The stages sometimes occur in that order or not, they may overlap, and sometimes you are in one stage for much longer than another, but in general it is a process. In the case of dementia though, the grief just keeps happening over and over again. And then sometimes for a short while you get back what you lost, just to lose it all again.

Blessings,

Rev. Katie