What My Grandmother’s Battle with Dementia Taught Me About Self-Care

My Grandmother passed away on 1 February 2019.  We said our “See Ya Later” on 9 February 2019.  I could not write this then.  I’m going to attempt to write this now.

First of all, I am not meaning to be flippant or disrespectful about my Grandmother’s funeral…our shared faith assures me that one day I WILL see her again.  That one day I will play Rummy with my Grandfather again.  That day is just not today and frankly the wait to hug her again seems unbearable at the  moment.

For the last few years of her life my Grandmother dealt with dementia as gracefully as she could.  Often knowing when things she thought or said were not quite right and getting very frustrated that her memory was failing her.

I kept phone contact with my Grandmother as often as I could for as long as it was possible to do so, and I still wish I had called more.  I wish I had gotten her to tell me the stories that are now locked in my memory and in my heart just one more time.  I wish that, before he passed from complications of dementia and cancer, I had gotten my Grandfather to talk on the phone just a few more times, just a few more minutes.

I tell you this to bring you to the first thing my Grandmother’s battle with dementia taught me:  Forgive Yourself.  Forgive yourself for the things you meant to do.  Forgive yourself for the things that you did not or could not do.  Thinking on those things will only serve to tear you to shreds when the battle is over, be it with dementia or just at the end of a day.  Don’t give them a foothold if at all possible.

Familiarity is KEY.  I am convinced that my Grandmother deteriorated and left us as fast as she did…just 14 months after the death of my Grandfather…because she did not stay in her own home.  I’m not going to open up that hamper of dirty laundry and air it here, but trust me I think Grandma would not have gotten so lost in her mind if she had stayed at her home where she wanted to be even right up to the end.  Having things that are familiar around you is always a great idea.  Having things around you that are comforting can sometimes be the key to being able to taking the best care of yourself.

 

 

Some things WILL change…Some things are best left unchanged.  I went to visit my grandmother at least once a month after she was moved to the first of her memory care facilities.  If I could not visit in person or I just wanted to see her face my Aunt was awesome at FaceTiming me while visiting her.  I knew her memory would not be perfect and I knew that things could and would fade even more over time.  Because of this I made the conscious decision to always use my walker instead of my wheelchair when making the trip to visit.  I also went by the name she called me…Pat…and not my preferred Trisha.  I also decided not to cut or color my hair for fear that she might not recognize me.  This reminded me that at times, things need to change, in fact like it or not they MUST change.  Sometimes it turns out to be best to let things lie.  Pick your battles.  Some hills are not worth dying on and others are fights you must fight to be able to live with yourself.  Only YOU know which are which for you.

Your experience is YOURS and no one else’s .  During all of the trips I made to see my Grandmother I did my best to just take her as I found her at each visit.  Most of the time that meant that she was “happily confused”, once it meant that she was ANGRY and frankly ready for a fight.  A few times it meant she was sad.  I took them in stride and just tried to let her enjoy her granddaughter.  We would bring her hamburgers or chicken sandwiches for lunch and she was happy to eat and chat with us…that never changed.  This year mom and I made the trip in mid October we celebrated my birthday a few days early with a pumpkin roll that she reminded us was not as good as the one she used to make.  During all these visits my bio dad told me more than once that my Grandmother was “gone” and that she wasn’t the person we knew and loved any longer…my sister even went so far as to say that she would not be going to see Grandma again until she was near death, because Grandma was, and I quote, “batshit crazy”…my sister only visited the one time that I am aware of and DID NOT make it back before my Grandmother passed away.  That was their experience, Grandma did not know them or make sense to them because my sister and bio dad were not there visiting.  My experience is that quite often she was indeed “happily confused”…but she always knew her Pat and I knew she’d be happy to sit with me and tell me her stories…even if they may have changed from the times when she told them in years past.

ALL of that is to tell you that I learned that my experiences are MINE and while others may have opinions or knowledge that can help me know what to expect they DO NOT have any right to influence or dictate my experience.

Find ways to decompress!  Whether you are dealing with a loved one with dementia, or just day to day stress that adds up and compounds and sits so tight on your neck and shoulders (just me?, okay then)…one thing is for sure.  You have to find a way to decompress that works FOR YOU.  For me it should be coding or cross stitch and more and more these days it is but that doesn’t mean I don’t WANT to stress shop.  Maybe you like to run, or box, or bake…whatever it is find it and use that to let the stress dissipate.

The More Stressful things Get, the more you need to know who you can count on.  It might be a sibling, another family member, a life-long friend, a Twitter friend, a pastor, or maybe just your cat.  But one thing is as certain as death and taxes….you have to know who that person is that you can run to, the person you can call sobbing, the person you can talk with even when you just talk circles around what you really want to say.  My circle is pretty damn tight after the last 2 1/2 years, and my cat has gotten really good at cuddles the last few months.