As I am walking out the door to get myself and kids flu shots, I see a message on my phone. As I listen to the voice mail, my husband reminds me we only have a half-hour to get to the doc-in-a-box before it closes. It is the only one in the area that even had flu shots left.
The voice mail is from the director at my parent’s retirement community. She is calling me from her home to let me know that the staff saw my parents leave in a cab after they refused to serve them wine with dinner.
I quickly call the town home and my mom answers. “Mom, what’s up?” – I try to say as calmly as I can manage. My mom whispers “I don’t know why we are here, you father wanted to come. I know we shouldn’t be here.”
I offer to drive over pick them up and take them back to their retirement community. I’m relieved to hear my mom knows they should not be at the townhouse, but flustered that they are there. My mom tells me my dad is in bed and she does not think he will go back tonight. She asks if she should she put him on the phone; I manage to reply “Sure”.
In the background, my husband understands what is going on and starts on his way to get the kids in the car. I feel my blood pressure increasing. My patience has been replaced by aggravation.
As I speak with my dad, I can hear the stress in my voice. All I wanted to do was go get my children flu shots and now I’m concerned about my parent’s safety at their town house. My dad tells me they came to the town house because this is where they live. In the background my husband is loading the kids into the car and backing out the driveway.
So many emotions are rolling through my head. Anger, dismay, concern, frustration. My dad says to me “I don’t understand why you are so upset.” During this conversation, I’m flagging my husband down to let me in the car so I can get my flu shot. I tell my dad I’m too overwhelmed to even begin to answer his question now.
My dad asks me for a ride tomorrow, I tell him yes. It’s inconvenient how my parents are behaving. While I know they don’t realize the duress they are causing me and my family, I am not yet ready to cut off the support I can extend to them to help them make this transition. But I recognize, most days, my parents are not interested in trying to make any transition. They want everything to stay the same.
The manner in which they react to any help or concern some days seems like they are trying to make it easy for me to walk away. Troubled.
Dear Kay,
I have not chatted here for a while, mostly due to my own struggle with dementia and a family crisis.
However, your blog today made me very emotional, and so I feel compelled to respond.
These are just my feelings and thoughts… from the other side of the fence.
I’m not sure your parents have enough awareness or insight now to be consciously pushing you away. In a recent blog I recall you said your fathers Alzheimer’s dementia was more advanced than your mums dementia? Due to their short term memory loss, they probably won’t remember this latest ‘incident’.
Even though you see random shining moments of insight from one or both of them occasionally… don’t hold onto these, don’t hope they will return more often. They probably won’t.
Your duress is understandable, as is your feeling troubled by the thought they might be trying to get you to walk away. These are just my thoughts: Their behaviour is not directed at you personally, even though it feels that way. Their ‘behaviours’ are in some way trying to communicate their absolute displeasure at having to live with the symptoms of dementia. Each ‘behaviour’ is trying to tell you something.
I strongly believe that deep inside they are still the parents who love you.
But the symptoms of dementia, caused by damage to various parts of their brain, is changing their responses and behaviour. If they were cranky because they were dying of cancer, and the treatment had changed their behaviours, you might find it easier to just love them they way they are? They do have possibly the worst terminal illness their is. It is not just a physical disease, it is also stealing their soul.
In some ways, I see it almost steals the souls of the people who love us, as we drift away from being the people you once knew. Have a look at my YouTube clip http://www.youtube.com/watch?v=9ZUyIRq5DAs to see what it feels like being diagnosed with dementia, and going into aged care. Every older person I have showed it to feels exactly the same. Having dementia is terrifying, going into assisted living is devastating.
Take some time out for yourself, spend some time with your husband and kids, lick your wounds… refresh your soul.
Try to let go of the deep desire their ‘old selves’ will come back. They have changed, and you can only accept it. They may not even be aware of how much they have changed. Try not to blame them for your own hurt and the perceived inconvenience you feel they are ‘causing’. We all change, every day.
With love and hope, and a million prayers for you and your family at this very difficult time.
Kate
Hi Kate – Thanks for your note. I know they aren’t coming back. I struggle in my own mind with how mean my mom is and am more afraid the woman in front of me in my mother’s body will tarnish the memories of the woman she was. We are going through many changes right now and the stress is bringing out the worst.
Your encouragement and helping me feel the other side of this equation has been immensely helpful to me and my siblings.
Hugs, Kay
I thought of you when I read this… http://acircleinthepath.wordpress.com/2013/01/15/enjoying-the-good-days/#comment-270
Hope you’re all ok?
Hi Kate – Thanks. We are going through some major changes and I felt it was better for all to be quiet as we move through this transition. My siblings are all coming to town to help and make this as positive and loving as we all face this battle together. I will share more once we are past some major hurdles.
Remember to take care of yourself and your family first. See how your husband did that? The 30 minute window you had was important and your parents would be OK for that short amount of time. Don’t over stress yourself and your family.
I’m trying and my husband is helping me get perspective on how to manage better. I will learn … sometimes, my stubborn nature requires for some lessons to be repeated again and again before they sink in. Thank you for your note.