Tuesday, April 3, 2018

On Being the "Gatekeeper"

One of the more challenging roles I've uncovered in the four years I have been giving care to my mother with Alzheimer's/Mixed Dementia is being the "gatekeeper".

Some people just assume it's fine to just come by when they wish.  Others call begging for time.  In our current phase, mom's rest and healing of her shoulder is more important than visitors that sometimes make her uncomfortable.  The last thing she needs is more confusion, frustration or any sort of circumstance that may make her more "lost".

I realize people miss my mom.  I realize people are concerned she may "forget" them.  But I also realize that her health comes first.  And, if anyone thinks it's easy for me to say "NO, not today or I'm not sure when just now", then they don't truly know or trust me.  Heck, I'm even guilty of having a pal of my own over on a day that maybe was filled with discombobulation.  But I'm still in training.

So, when I have to say "no" to you, please don't take it personally.  Please understand that this period in our lives is all about my mom's well-being.  I don't want to call it my "job" to caregive my mom - because it is an honor; but I do appreciate anyone who respects my judgement on why I have to say "no" sometimes.

It's called boundaries and it's finally time for my family to set them.

Big love.

Wednesday, March 14, 2018

Adventures in Caregiving 101

It will be four years on March 17th, that I've been living with my mama, helping her through the twists and turns of Mixed Dementia.  This is not to be looked at as a formal complaint, but rather as some of the more hilarious sides of this whole situation.

 1) Holidays - I totally forget about them.  I have no clue when they are, and often not a clue what day it is in general.  For this, I ask for your support - a week or so heads up in advance re: holidays would be delightful.
2) Toilet Paper - I need to just buy it (and stock in it) every time I go to the store, because this is an area that can totally freak my mom out.  Well, it's likely it freaks everyone out, when they are well, out of it.
3) Medication refills - Ah, my favorite thing to do, stand in line surrounded by very ill people.  And then the Pharmacy closes for lunch before I'm able to get the meds, due to sick people in line before me. Back in the olden days, when I first arrived, all her meds came due at the same time.  Those were the days, my friend.
4) Doctor's appointments - I honestly feel as though we need someone like a tour manager to help book these.  I once booked FIVE appointments in one week.  This, gentle readers, was not a good plan and I don't even think Cher had enough wardrobe changes to manage all that, but keeping fed, medicated at the right hour and any other possible issue that could present itself at the time, did.  I have learned my lesson on this one.
5) Maintaining sense of humor at all times - while I'm a rather easily amused person, there are some days when not a darn thing is funny.  "Too soon" comes to mind.  The next day, however we can laugh about it until we are drunk on pure silliness over my loss of sense of humor.
6) It's always Friday - when a health crisis arises, I know for certain what day it is, it's Friday.  When the Doctor's offices close at noon and I've figured out I need to call them at 12:06 P.M.  Some of the Doctors have given me their personal cell numbers.  I believe each of them are rethinking that now.
7) Trying out a new medication - This is a space of befuddlement that adds to all sorts of funny new things that involve private issues, I'm sure my mother would not be happy I shared.
8) Getting admitted into the hospital after two seizures and one fall and broken humerus later - Turns out medicare doesn't want people to get well anymore.  After a fall/seizure it's not so cool to just pick your mama up off the floor and ask her to walk it off.  This is where I prefer actual medical professionals to step in.  Call me silly.
9) Paperwork - don't leave home without it.  (apologies to American Express) Seriously the moment you don't have the list of meds (which, thankfully, I now have committed to memory) or the Durable or Medical Power of Attorney, they won't let me do a darn thing, like say keep my mom comforted when she in wondering where the heck she is and what the heck happened.  I now carry a purse the size of a diaper bag so I can just grab and go.
10) Don't forget the cane or the glasses - whether following an ambulance or with your mother as the passenger - the cane and the glasses are vital to quality of life.  While my mom loves to be read aloud to, she still prefers to read her own stuff at her own pace.  And well, walking is just generally safer with the cane.

That's all for now......