It’s been a while since a personal update

In the early years of ServeHimInTheWaiting I was more personal here, alongside of the articles and videos that I passed along. Historically, I’ve been the type of person who likes to go deep with other people, to truly know and be known.  I am also a highly sensitive person, however,  so its a two-edged sword of sorts. I share, then I wonder if I should have. I have tried, and maybe had a little success over time at growing a thicker skin, but if I am honest with myself, I think it’s not so much my skin having grown thicker, as I have curbed how much I put myself out there. That personality type doesn’t work well when paired with the chronic fatigue of narcolepsy with cataplexy and the hi/low  energy mood issues that can accompany that and my other two sleep disorders, obstructive apnea plus central apnea — which is when the brain simply fails to signal the diaphragm and lungs to breathe.

It’s been an emotional week for me. We went to check on Mom last weekend. Then our grandbaby turned a year old Tuesday, and our youngest (Air Force) son was home for a visit, (Sat 11pm to Friday 8am) and tomorrow I will take the train back to WV to figure out what’s next for Mom.

She and Dad raised two grandkids as their own in their later years. A boy and a girl. The girl, my neice is schizophrenic, diagnosed a couple of  years after my Dad died, and the years since Dad’s death have been some awfully chaotic times for Mom.  My neice moved out of state a couple of years back. My nephew is now 32. Mom was overly protective and had she ever been evaluated, she would (in my opinion) likely have been labeled with Obsessive Compulsive disorder. This has had implications for all of us.

I don’t put total stock in psychiatry, but nor do I deny there is mental illness. I think a lot of psychiatric intervention is guesswork, theory, and often does as much harm as good, and it doesn’t take into account the moral depravity of humanity and the spiritual aspect of things. That said, it’s an unfortunate necessity in some cases.

But all that aside, my 32 year old nephew who still lives in Mom’s home, has been the one looking after her the past 12 weeks since my older brother took it upon himself to (sure felt like, to me) totally throw away all the weeks of work, effort and expense invested in bringing her to VA, (discounting the already inherent setback in progress), and the one shot to get all new doctors and care established here.  Simply because in her developing dementia and unrealistic understanding of her own needs (not to mention her grandson’s capabilities and limitations), she insisted on going home!  I was pretty gobsmacked and by the time I knew about it, her stuff was packed and plan was in place.

I knew when it happened, she was going to go downhill because thats what she does since surgery, anytime she goes a few days without social stimulation. She doesn’t get much of that at home. I knew it would also mean I would be the one, once again, leaving my home to go take care of her in hers. My brother has, since her surgery, experienced a life- changing and debilitating medical event, and can’t contribute to her care, while my younger brother works , by choice 60 hour weeks to maintain  standard of living and meet the 6 year early retirement goal he has set. Both live here in VA.

It is unpredictable how long a person will linger in an increasingly dependant state. I would have preferred to face that here where I can be with my husband and near my son and his family while they’re stationed nearby, and where her care could be shared, but family dynamics being what they are, it’s hard to say which would have turned out best or worst anyway. I have to trust God’s hand is in there somewhere. At least it’s given me some time to recoup from the previous 8 months.

There’s no accounting for nor understanding your own family of origin, the loyalties or lack thereof, and ways of thinking.

I was convinced 19 years ago that my nephew was on the autism spectrum. I tried every way to get my parents to understand and pursue testing. Even if they had to get it via the public school system. They had him in a tiny Christian school.  my Mom constantly claimed in their middle and high school years that both he and his sister were bullied and sort of both were scapegoats. I don’t know the whole picture, I wasn’t there, but I know Mom’s unrealistic blind spot for the wrongs or failures on the part of her own kids, and those two grandkids she raised are every bit her kids as much as the ones she carried, plus the one whom she and Dad adopted, which was Mom’s-sister’s-daughter. So. Yeah. My cousin became my sister, then she had 2 (actually 4) kids she didn’t raise, and those 2, who would have been my second cousins, became my niece and nephew, raised by my parents after the first family were grown and independant.

So this cousin/nephew and cousin/niece I speak of, are also kinda like my brother and sister, since my Mom and Dad are the only Mom and Dad they ever had.

I know it’s not that uncommon these days, but it still probably sounds pretty messed up. The choice Mom and Dad made, to raise them, and also, to move back to WV after raising their “original” family, had implications on their ability to be a part of the lives of their true biological grandkids, and wasn’t without traded off consequences, and some ” feelings” on the part of us bio-offspring. There was a young Christian couple already approved and waiting to adopt the boy from the Baptist home for unwed moms, (he’s the older of them). But Mom and Dad couldn’t trust that outcome, so they took the baby and my (adopted cousin) sister back home after his birth, hoping at 18 years old she might develop maternal instinct and responsibility. In retrospect, I think my sister is also on the spectrum.  Plus I think the severe neglect she endured her first 9 months of life before adopted, rendered her unable to bond and attach.

This grandson-raised-as-son who is now 32 and still lives with Mom has finally yielded to my continued encouragement over the years to pursue testing, and was indeed diagnosed with autism spectrum disorder. Autism is not mental illness, it is a neurological difference , however, the years of not being diagnosed and not having any support or help,  resulted in several years of severe depression and, (his Dr claims) PTSD. Probably accurate to a certain degree. He has no one but Mom, his sister, (who can’t offer much help), and me. Some support from Mom’s sister, as far as helping with Mom, but regarding his own needs, not really involved. Others in the family don’t seem to have much understanding, nor feel any personal obligation to him “as family”. He’s been judged by many people in life. It’s sad and unfair. But life isn’t fair.

He has had one seasonal job, that he held for 3 summers in his early 20’s. He enrolled in college and failed out on the second semester because he has no organizational or time management skills and has never been allowed (nor consistently held to) responsibilities. He is highly functional, intelligent, and more capable than he knows, and has more on the ball than many in the family give him credit for, but he is also very stubborn and has that Aspie tendancy to be convinced he is right in his own conclusions and perceptions. He desperately does need some training, and rehab support and help to transition into independance and self-support.

He has had to shoulder real responsibility since Mom’s surgery, and I assume that maybe some of my brother’s thinking when he took Mom home, was that it wouldn’t hurt him to have even more. Personally, though, I don’t think it’s quite that simple. I don’t think either brother truly grasps the 24/7 no-breaks nature of taking care of Mom, and neither has experienced her in her most dependant states, or if they did they thought she was “putting on” or milking the attention. I have never witnessed that in my Mom. She isn’t intentiinally manipulative, although she can get a martyr complex occasionally. My brothers also don’t seem to understand how daunting autism can be. Anyway…..getting back to the original train of thought….

I’ve missed a lot of opportunities to have time with our older son, since he returned from the Army right around the same time I had to be in WV to help Mom prepare for her surgery, (which was then delayed twice, so I felt I even lost some of those opportunities needlessly). One delay was covid related, the other was so ridiculous I can’t even go there.

And the repeated trips between her home and mine, of course has limited time with the grandbaby. Though my son got out of the Army, his wife is still in, and he is in the reserves. In July we did get to keep the baby while our son and daughter-in-law had training they each went away for. They live 2 hours from us, so it’s not as simple as zipping across town to see them anytime. We probably saw our grandbaby about once every 4-5 weeks until July when we had him for many days and nights and really got to bond. I am not complaining. I am very thankful our son and his family are near enough we can see them at all. I know getting to be involved grandparents is a wonderful privilege and blessing, and not a right or entitlement. Of course we pray for them all, for their safety, God’s provision, and their relationship with the Lord.

They were here yesterday, and it was such a pretty day, we spent a couple of hours on the patio, and it was wonderful. It was also a comfort, since we had just dropped off our younger son at the airport after his too-short visit.

It was only his second visit home  in his nearly 4 years in the Air Force. I did not anticipate how few times we would see either of the boys once they enlisted.

I have concerns about the influences he’s being exposed to, and choices he is making, like any Christian Mom of a young adult son.  He’s back in California this morning, and I’m trying to catch my breath and emotionally prepare for whatever is next with Mom. Her dementia seems to be getting worse pretty fast. She still recognizes everybody, she can talk and make perfect sense, she just can’t remember something she did an hour ago or that her sister visited the previous day, or that she did meet my first grandbaby just before her surgery.  In the last 3 weeks she has started having a lot of pain in her lower back, butt and legs. The E.R. doc said it is sciatica, and it may be, as it is nearly impossible to persuade her to keep moving and doing exercises and keep her strength up with chronic anemia.

So. Yeah. The weeks and days this year when I didn’t post much or anything, that’s what was going on with me.

The move of Mom back to her home was “starting over” yet again, with new doctor, and waiting for home health to get re-started. The gaps led to more lost progress, and at nearly 78, with stage 4 kidney disease, chronic anemia, issues with skin tears, falls, chronic pain, bowel and bladder, anxiety, every setback is significant. I finally requested palliative care with potential for hospice if her level of need qualifies. So far, though, not much her insurance is willing to pay for.

A lot of emotional stff. I call it “stirring up silt”. The stuff in life that is painful, uncomfortable, that we try to avoid thinking about until we have to, but then something happens that stirs it up and muddies the waters with all kinds of emotions.

Mom used to read everything I posted. She has forgotten how to use her tablet and all but the most basic functions of her phone. The prevalency of tech is a real curse for someone in her condition and she was one of the older folks who embraced it. My Dad wouldn’t touch a computer with a ten foot pole, lol. He’d have been lost had he lived another decade. He took a post-retirement job with Lowes many years back, and when they told him he had to train on the computer, he quit. It’s a conspiracy, I say. The young tech whizzes are purposely, or heedlessly at least, leaving old folks behind. I feel I am quickly moving into that category my own self. Lol. When people are young, most don’t think about the fact they’ll some day be old themselves. I was an exception to that generality. Not that it necessarily made me any more prepared for the stiff knees, hearing loss, and the appeal of an 8pm bedtime.

This is life! As a Christian, I have learned to see what does and doesn’t happen in this life is not the be-all and end-all. It’s not the final say. But I also have learned that some of the expectation of “holy living” that can get projected on us, what that looks like and means, does not necessarily align with God’s definition. Meanwhile, there has definitely been a lot of cafeteria style Christianity.

Thank God He is the one who’s going to sort that all out.

For me, it’s come down to this. It’s a matter of getting through each day as it comes, one day at a time, do what’s right, don’t stop trying, just keep walking facing what’s before you until the road ends. I don’t dwell in the past these days, and I try to avoid projecting forward. Kind of how I did when I used to run long distances (for my own purposes), and especially on the uphills. I kept my eyes on the patch of road right in front of me and just kept pushing til I either got home, or couldn’t push anymore. God has proven faithful to know when to let up, and when to require more of me.

I don’t know what you face. Fellow Christian wherever you are. Sometimes I just write my thoughts and toss that message-in-a-bottle into the internet ocean. Maybe it washes up somewhere and means something to someone, and maybe it sinks to the bottom and takes my burden to be lost and disintegrate among all the words in the internet ether, countless as the grains of sand.

Such are my thoughts in the midst of the whirlwinds.

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