Monday, January 11, 2016

Put On Your Own Oxygen Mask First

Stress is insidious, it sneaks up on us as we are busily living our lives, handling a little more...then a little more...then a little more...and then one day, we simply can't handle it anymore and something snaps.

I heard that awful snapping sound like a taut rubber band letting go this morning, and I think both Dominick and I were awakened to the fact that both of us, but I in particular, have an enormous amount of stress in my life right now that neither of us realized was present to the degree it was.

I have spent the past two months sleeping no more than an hour and a half at a time each night, as joint pain has caused some real sleep disturbance, and I am sure as thoughts have run through my head.   A new mattress may help, but that loss of deep, regular sleep is certainly a contributing factor.

But you know what?  It's not just that.

We talked a lot today, after I had an early morning Sob Fest, which is quite unusual for me.  I am far more of a "Get in and get 'er done!" kind of gal, not an "Oh woe is me!" kind of woman.  I suppose I am no different than most moms at this stage of life, sandwiched between an aging parent and kids still in need of parenting.

But the past couple of years have been doozies, and it isn't getting easier, and in fact it is gradually getting harder.  Little by little, more and more has been dropped in my lap, and I sort of soak it up and keep moving along.  Today it caught up with me, and that was perfectly ok.  Sometimes that has to happen in order for us to release some of the pent up frustration and move toward healthier solutions.

There have been major changes in our lives, while still trying to keep everything afloat.  Purchasing the store meant financial sacrifice for hopeful eventual long term gain for the entire family.  We knew the first 2-3 years would be difficult, and we were correct.  Unexpectedly, Dominick's inflexible work schedule has proven to be harder on the family than we anticipated.  It has not only added another part time job of bookkeeping for myself, but has meant I am essentially single parenting as he semi-permanently works 12 hour days.  Because of where we live, many of the medical appointments or other activities for the kids are no less than a five hour drive away, with Kenny and Matthew both being treated out of state. 

We are also coming to a firm understanding that parenting Kenny through adolescence and into adulthood is going to be a tremendous task, one gladly accepted, but one that has seriously been overlooked by me as being as all encompassing as it really is day to day.  It has been such a gradual ease over the years into a more caretaking role with him, that I guess I never really noticed how much thinking I do for him throughout every single day.  I don't SEE myself as a caretaker, I see myself as just a mom, but it is way more than that and I am just beginning to allow myself to view that role differently.  Maybe I don't like it and have avoided the thought, I don't know, or maybe I really haven't understood it to the degree that I am beginning to.

I told a friend today that if Kenny had gray hair and had the label of "Early Onset Alzheimer's", everyone would instantly have an understanding of what our life is like.  Because he is young, and presents as such an intelligent and thoughtful young man, no one has a clue what life is like for all of us, particularly Kenny himself.  The truth is, Kenny could not wander around town without getting lost...just like an Alzheimer's patient.  Kenny loses things ALL the time, it is a daily occurrence... just like an Alzheimer's patient.  Kenny can't always remember things like personal information, facts, or phone numbers...just like an Alzheimer's patient.  Kenny can't keep himself safe around traffic, or in the kitchen, or with strangers...just like an Alzheimer's patient.  Kenny can't remember his personal hygiene every day like sometimes forgetting to change clothes or shave or brush teeth...just like an Alzheimer's patient.  And Kenny can not follow directions well, unless they are giving one step at a time... just like an Alzheimer's patient.

And yet no one would look at a 17 year old affable young man and see all of the above, but it is how we are living... we live with the equivalent of a happy Alzheimer's patient.  

We are beginning to understand that caretakers of Alzheimer's patients need regular respite, and so do I.  I have to think every day not for one person, but for two all day long (and that doesn't even take into account the typical thinking a mom of five teenagers has to do to make up for "Teen Brain") . I not only remind him of his personal grooming, but I have to provide him with the words he is trying to say when he can't come up with them, or I have to straighten out his explanations when they aren't understood.  I also have to explain him to others, as I did this morning before church with one of our long time friends working with him on teaching Sunday School who had no idea Kenny had the challenges he did.  I interpret the world for him, and him for the world.

For example, today we had a long conversation about goals for Kenny, as he has seemingly slipped a lot in recent weeks, no doubt due to lack of a schedule around holiday time.  So we sat at the table, the three of us, and talked about what goals he needed for the next couple of months.  One of them was to master his morning routine.  How many 17 year olds do you know would take 15 minutes to try and remember all the steps for his morning routine to make certain he didn't forget things like shampooing his hair?  I walked him through it, trying not to provide the answers, but letting him try and recall each step.  Finally, he came up with all of them.  

When we were done, Dominick looked at me and I could tell he suddenly had much greater clarity about how hard this is.  He understands to a degree, of course, but because he is not working with it day in and out, he hasn't really seen the extent of Kenny's deficits regularly.  

So, as we are coming to internalize on a deeper level that I am Kenny's Life Coach, as well as educator...and educator to Matt, Angela, Olesya, and Josh...and sort of single mom for at least another couple of years...we are understanding I need real regular breaks or I will be the one breaking.  With Kenny, this is forever.  We anticipate that he will eventually work at the store, with me side by side as his job coach for perhaps years in order for him to be able to eventually develop a routine enough to be able to do anything there without supervision.  And I do mean years and years of side by side assistance and reminders, coaching...and it appears that even then he will need full time close supervision.

Because this isn't going to get better.  It's not.  He can learn, he can become better educated...and for some reason remember that sort of teaching as long as I am teaching specifically to how he learns.  But his organizational skills will never get better.  His memory will never get better.  His judgment will never get better.  His auditory processing will never get better.

This is my "Working it Out" place, and maybe I need to say this here a few times so I can really take it in.  I need to come to an understanding around this because it helps me be a better mom and Life Coach for him.  It helps me keep expectations appropriate, but right now, I think what I need to understand more than anything is that I am the mother of an Alzheimer's patient of sorts.  That helps clarify for me what my needs are so that I may be able to be there for him in all the ways he needs me.

I need to put my own oxygen mask on first, and until very recently, I haven't understood that need.  It was Angela who pointed out the startling fact to me this week that I have almost no adult time at all these days, that if I get an afternoon or evening a month in adult company outside of church on Sundays I am doing good.  Life just hasn't easily allowed for it right now.  

Dominick and I have also talked about how I never get to leave "work", and it makes relaxing at home harder.  Angela kidded me today that even though none of them try to bother me if I am on the phone, if they all come to just say good night that is five interruptions!  While Dominick works incredibly long hours, he gets to leave his place of employment behind and come home and truly relax, where grading, bookkeeping, teaching, laundry, shopping, cooking, driving, "churching", mothering and other tasks mean I am on the job 24/7.  While they may be the most lovely people in all the world, it still means a level of stress I never get to leave behind.

Homeschooling at this age is not what it is for other families.  I read through every single page of every single textbook with the kids, then question them using Socratic methods.  Other families aren't dealing with the cognitive issues we are faced with, nor the language learning issues, and when their kids are this age, they throw them a textbook and send them on their way.  Our homeschooling is intense, and is truly a full time job for me.  While very enjoyable, it is weighty.

We have a long haul to go here, with at least three more major surgeries ahead of us in the next year and a half or so, years more robbing of Peter to pay Paul, at least five more years of homeschooling plus being career guidance counselor and post-high school academic coordinator.  We have disability advocate and job coaching to add in, aging parents out of state to visit and handle finances for, and friendships to somehow try and maintain.  

My oxygen mask has to stay on.  We are going to be intentional about getting me out of here more often and for decent stretches of time so I can begin to breath again, and think more clearly.  I am going to jump in more in ministry work at church because that fills my soul tank up, which has become depleted over time.  I am going to try and find some way to play a little more, and who knows, the Steam games Matthew purchased for me for Christmas might just help in that regard.   I am going to try and squeeze in more time with friends, my ever faithful troops who put up with me and my lack of availability.  That oxygen mask is darned important, and this morning proved to us that no one put it on me, but I have been putting it on everyone else.

All is well, awareness and willingness to fill gaps is all that it takes.  Accepting hard truths helps allow for changes in thinking as well, and we realized today that Kenny's needs are hard on me in gentle ways, but hard nonetheless, and that shouldn't be overlooked.  As careful as we are to meet his needs, we are now seeing I need to be cared for as well, or the lifetime stretching before us of me thinking for two of us will seem impossible to handle.  

And now, at 3:20 AM, maybe I have dealt enough with the turbulence that sleep will finally come.  Writing always helps me "put it away", though it likely makes for boring reading for blog visitors!  And I purposely don't go back and edit my content, as I would for any writing project, for this place is my personal "luggage compartment", it needs to be.  I just leave the bay door open so you all can take a peak at the mess.  So, my oxygen mask is firmly in place, and as pilots will assure you, a little turbulence never killed anyone...they always make it through.  So will we, there's certainly enough love here to ensure that.


B.A. said...

Funny story for you - my niece who was adopted and has disabilities similar to Kenny's is in a special college program with other kids who have these types of disabilities. She has a driver's license but she can't drive by herself because she can't remember how to get any where. She started going out with a boy in the program who has similar issues. He can't drive but he can remember where he is going. I've been thinking that they are a perfect couple - she can do the driving while he provides the directions. Maybe some day Kenny will find his complement as well.

Anonymous said...

I don't know the ins and outs of how to make this work, but did you know that if Kenny could get a doctor to say that he needed nursing assistant care ( sounds like everything you are doing for him). And if he qualified for Medicaid ( medicare?) you can be hired as his cna ( i think there is 6 months training) and paid to take care of him. Just something to look into that might take some financial pressure off your plate. Now might not be the best time because of all the other stuff you have going on but keep it in mind for the future.

Sammie Fick said...

Sending you a hug. I know it is very hard. Wish I lived closer so I could give you a break. My boys are still challenging but are currently in places where I can get breaks.

Lorraine said...

Hope everything is okay with you and your family. Missing your posts Cindy. You are all in my prayers.