Have you attended a caregiver conference? If so, what topics drew you to the event? What would you like to see addressed at future events? If you have not attended a caregiver conference would you attend if there was respite care provided at the event?
When it comes to care giving, sometimes love doesn’t enter the picture at all. People with dementia behave in ways that try us to our very limits. Waking each morning wondering what new hell this day will bring causes anxiety, resentment, grief, and anger.
You may have loved your parent, your spouse, your sibling, or your grandparent for many years, but when dementia takes over and the person you knew is gone, replaced by a stranger trying to escape from you, refusing to bathe, and accusing you of all kinds of terrible things, love can be forgotten. Sometimes it’s gone for only a moment or a day or two. Sometimes it dies leaving duty in its place and we grieve while they still live. Sometimes we pray for the end to come and are overwhelmed with guilt for even thinking such a thing.
However, it’s not death we wish for, we don’t really want that. We wish for the pain to end. There’s and ours.
It is because we care that we started this journey. It is because we care we carry on when we think it’s no longer possible, even when we wake up each morning wondering what new hell this day will bring. For deep inside they remain who they once were and so do we. We rise and enter their world ready to keep them safe another day. And that’s what love’s got to do with it.
“Christmas will be just another day in our house. Mom doesn’t know what day it is anyway.”
And that’s true. She doesn’t know it is Christmas present but she may remember Christmas past and that may be the way to connect with her and bring a little happiness to your day.
Most of us save ornaments from year to year and some of them become family favorites that become little treasures of happy times. Forget about putting up a tree and having to deal with all that entails. If you can do it without too much trouble, bring out one or two of the ornaments that adorned the trees in your home when you were growing up.
I remember making red and green chains out of construction paper as a child. Mom saved them until the glue dried out and they fell apart. Seeing even a picture of one makes me smile. I made some with my kids when they were little. Perhaps your family made them too. Even if they are long gone a picture of one may do the same in your home.
When my kids were little we had a large Styrofoam Santa head smiling at us from over the mantle each year. Now all my children have one to hang in their home. I won’t need a tree or lots of fuss to evoke Christmas when I am old. Seeing that Santa head will always connect us and bring back memories.
Hearing traditional Christmas carols may inspire an unexpected sing-along. And if your family is anything like ours you may want to include some of the less traditional ones like, Grandma Got Run Over By a Reindeer, I Saw Mommy Kissing Santa Claus, or Santa Baby to mix things up.
If friends or family members ask what you want for Christmas tell them to forget about certificates for spa days you will never use. Tell them to stop by and bring a vintage Christmas card for your loved one and spend some time with them to give you a break. That’s what you really need and want any time of the year. The gift of time is priceless.
Do you have a favorite ornament or Christmas song that evokes Christmas memories that connect you and you loved with Christmas past? If you do, feel free to share them here.
Dad’s behavior is becoming more erratic as his dementia advances. His former mild manner is long gone replaced by outbursts and suspicion that come with sundowning each day.
The man you have known all of your life, the man who would never think of stepping out of line or behaving in an inappropriate manner with women, has suddenly started exposing himself to you and every other female he comes in contact with. He may express his desires in the crudest terms there are.
Shocked and horrified you may wonder, “Is this a side of him he kept hidden all these years? If so, I have no idea who my father really is.”
Or: You enter your mother’s room to say goodnight. She has thrown off her blanket and removed her underwear. Her back is to you. It takes a few seconds for you to understand what she is doing.
Your reaction may be, “Oh my god, Mom would never do that!”
Or: You arrive to spend time with a spouse in a memory care facility and walk in on him or her in a passionate embrace with one of the other residents. You are hurt and angry. Feelings of betrayal and jealousy take your breath away.
How could the one who promised to faithful until death do us part betray you when you are sacrificing so much to make sure they get the best possible care?
What is going on? How can you ever face this person? Do you even want to? What can you do about it?
Dementia is a devastating brain disease. If the part of the brain where inhibitions are stored is affected acting out sexually may happen. The libido remains strong throughout life, for women and men with dementia included. The difference now is that their brain is damaged. They don’t understand that their behavior is not appropriate.
So what are you, the caregiver, to do?
First and foremost, protect yourself. If there is any hint of danger go to a place of safety. Lock yourself in the bathroom, run to a neighbor, call 911 if necessary. Make sure you tell the dispatcher that the person acting out has dementia so officers understand what is happening and why.
If there is no danger to you or others, simply close the door and walk away allowing him or her the privacy they deserve and you the time to work thorough your feelings.
Understand that people with dementia often forget their actions as soon as they occur. It would be helpful if you could find a way to do the same. If you can’t, feel free to vent here. You are not alone. The Imperfect Caregiver has lived it and is here to help.
Often one person in a family becomes the caregiver and the others go on with their lives as before, offering little or no help.
Why did you decide to be the one who gives so much?
In my case people were surprised to discover that I was a caregiver for my father-in-law. “You mean he’s not your father?” they would say. Surprise evident in their tone.
They were even more amazed when told he was my husband’s stepfather and not a blood relative to either of us.
“Why would you do this? You must be a saint.”
I am no saint. I am simply a woman who saw a family member in need and did my best to help. I didn’t know how hard it would be or how long it would last. How could I have known? But even if I had I would not have changed a thing.
Some day I will need help and I hope someone will be there for me.
Families are not created only through DNA. We marry, we bear children, we divorce and remain connected. Families feud over things big and small and still remain connected. We create unique families through adoption, friendship, and commitments of all kinds.
Through this blog I reach out to offer support and understanding. To let you know you are not alone, that you are part of a vast family of caregivers.
For writers, show don’t tell is the difference between: “John was being aggressive. Jane was frightened.”
And: “Stop! It’s me, Jane. I’m your daughter.” Jane ducked as the antique lamp whizzed through the air, missing her head by less than inch.
In the first example family members are left to fill in the details of what is going on. In the second one we see that John is out of control and Jane is in real danger. We feel for her and we want to help her in some way.
Showing your distant family members what you are dealing with on a daily basis may elicit a very different response than your telling them about the vile language your mother spews at you when you try to get her to eat. Or how she refuses to bathe or change clothes and hits when you try to calm her. They insist that the sweet woman they know would never act like that. You must be making it up.
You could provide example after example of the chaos dementia causes. How exhausting it is to be sleep deprived for months. How mean someone who raised you can be. How desperate you are for a bit of understanding, a moment of peace and still they don’t get it.
So often I hear caregivers say, “Only someone who has done this can really understand what it is like.”
It’s true. What dementia does to a person cannot be expressed in mere words. So what can you do?
Use the video camera on your cell phone as a way to communicate with your family. Brief clips of every day behavior can be emailed in moments. Show the anger and aggression, the refusal to eat and bathe. Let your family see what happens when their loved one is hallucinating and how dangerous things can get. Show your family how hopeless you become. How much you need help and understanding.
Nothing I suggest works for everyone but at least your family will have seen for themselves what it’s really like to be a caregiver. It can’t hurt. Might help.