Personal update

Posting has gotten pretty spotty, as you have probably noticed. Mom was finally discharged home from rehab on the 11th, but she is far from the independance we had hoped her surgery would restore. I learned at her last primary Nurse Practitioners appointment just prior to surgery in November last year that she had changes on her head CT, so the memory issues she already was having were more than the absentmindedness that always worsens with new stress for her. The lack of oxygen that occured during surgery definitely took another chunk out of her mental capacity. She knows everybody, where she lives, can keep up with date and time on the clock, but whether she paid her homeowners insurance, or what her e-mail password is, when her next appointment is, those kind of things are gone. She was still capable of driving before surgery, now,she might be able by muscle memory, but could she find her way home? At least she is cognizant enough to know she shouldn’t drive. Memory stuff can be very puzzling.

She is mobile with a walker, but has Menieres vertigo, and possibly other dizziness from some of the necessary meds. Her kidneys are functioning again, with the aid of 2 diuretics, so she has not had dialysis in 2 weeks. She has fallen about 7 times in the past 3 weeks, 3 since coming home, and the last time was 3 nights ago. Her bones must be pretty strong, no breaks, but a sore coxxyx. Her skin is so fragile that the epidermis peels back like the skin of a plum, and she shredded it in 3 large areas on her right arm that night, trying to break her fall against the corner of her dresser. She had been getting to the bathroom with her walker independantly several nights, and she said she doesn’t know what happened, but she must have bumped the corner of her dresser as she rounded to go through the bathroom doorway and spun around as she fell. When I came in, she was turned the opposite direction of the bathroom to which she was headed, sitting on the floor bleeding. My nephew had gotten to her quickly, and by God’s grace, I was far enough into the half-life of my xyrem dose that he was able to wake me up and I was fairly functional to get her bandaged up til morning, when I soaked off the dressings, cleaned the wounds, and did a better dressing.

Unfortunately, since she didn’t want to return to the same NP who had ignored her concerns about the pain in her legs for years, (caused by the bilateral femoral artery blockages she finally had the surgery for) that NP wouldn’t sign her home health orders, and so her home health PT and OT and nurse stopped coming after first visit, having no orders. I am concerned insurance will use that as an excuse not to pay for any home health now even if they can get orders from the new doc. Same NP neglected to refer her to a kidney specialist as well, when her kidney function had been diminishing for years. All tolled, it really is pretty miraculous that she has recovered as much as she has, physically. I attribute that directly to God and via her surgeon, her kidney specialist, and the nurses and therapists at the rehab facility. I had to stay on top of everything and speak to them about a number of issues, but management, staffing shortages, and administration where mostly responsible for the aspects of her rehab stay that were unnecessarily complicated, unduly stressful, frustrating and confusing. For the most part, those who worked with her directly were compassionate, caring and competent, and many were Christians.The one individual who really strived to help me (as her medical power of attorney and daughter) was one social worker who was her assigned “guardian angel” for that role. I took complaints and concerns directly to the on-site CEO, so as not to take floor staff away from patient care, but no matter how you parse it, medical care has become extremely disjointed. Continuity of care, and holistic care used to be the key concerns of administering patient care. Not anymore! The nurses in the facility generally knew nothing about her renal status when asked, other than the fact she was getting dialysis. I had to call the diialysus facility if I wanted to know her latest creatinine level. The nurses at rehab, couldn’t even access the therapy notes! I was gobsmacked.

I realized doctors had taken to a pattern of treating merely the ” slice” of the patient they specialized in, heedless of the whole, but didn’t realize how tragically nursing had gone the same route. What the heck happened since I went to nursing school in the 90’s? And even just since I left nursing a decade ago?

The “system” has been breaking down for a long time, I guess. There was a nursing shortage when I went in, and it eased some in the 2000-2015 years but there is a much worse one post-covid. I tried to view the shortcomings through the lense of the aftermath of covid, and to just be very thankful our healthcare system is still holding together. But I wasn’t going to tolerate her being neglected, either. So I kinda became “that daughter”. The number of calls, emails, appeals to insurance, ombudsperson, and third parties, oye! 4 months in hospital is a looooong time.

Anyway, the current situation is not sustainable as is. She has a grandson in his early 30s with some special needs whom she raised, who I believe is capable of independance, and even of caring for her but needs some services and support to get where he can do so. He can’t manage her right now on his own,his sister came ho mb e to cover the next two weeks, but after that, it’s back to me, so we may have to bring her to VA where my brothers can help me with her. That leaves the grandson alone up there in WV, which I fear isolation may set him back. I’m leaving out a lot of detail, of course, but many of you out there have some similar scenario either in your own family or know of someone else who does. My goodness, that term ” sandwich generation” has been around a while now. She was still raising grandkids when her mom started needing care. Now she needs a lot herself and the grandkids she raised and her kids are all helping as best we can, but all except the special needs one, live in other states.

All I can say is God better have something up His sleeve, because I sure haven’t figured out a plan. I’ve felt this day coming and hanging over me for years. My brothers and I tried years ago to head off some of these potential issues, but for reasons beyond our comprehension, our parents wouldn’t consider our proposals, nor these eventualities and they just weren’t willing to take measures, and now here we are.

The world changed so much during their lifetime, and my parents were simple folks from the hills of WV, so they managed, especially Mom, to not have to face some of the harsher realities of life in this age. If I had a dollar for every time she has had a new rude awakening since Dad died, I might could buy a pair of half caret diamond studs.

She was a mom and housewife, raised six kids,(2 were her grandchildren, so basically a second family, one of which she’s still “responsible for” at a time when she can no longer care for herself). Now her adult birth kids need to take care of her. The 32 year old grandson (and 28 year old granddaughter) went to a tiny Christian school where not only were there no screenings for autism and such, but because he was different he was picked on and bullied, and considered a “problem” by some teachers, as was his sister. They both left their 12 years of that school with emotional scars. I personally am convinced he has aspergers, she is diagnosed schizophrenic.

When Dad died 10 years ago, Mom was still providing for both of them, and my neice had yet to be diagnosed. The things my Mom has been through just in the last decade would have broken most people.

Now surgery and rehab have taken her life savings as well.

My older brother had been set to spend a couple of weeks there with her next, but circumstances beyond his control have nixed that.

My younger brother and his wife have a family friend in elder care who has recommended a new-ish outfit near us who specialize in coordinating the care needs of the elderly, that I plan to look into after I rest up a day or two. I have to first find out the implications of insurance, whether bringing her to VA is at all an option, and he will make a place for her in his home, while hopefully this practice will coordinate the transfer of care. I will still have to handle all her medical stuff, but at least I wouldn’t be away from home for weeks at a time.

Meanwhile, our Army daughter-in-law is on standby in her logistics unit, to spend 6 weeks in NC to facilitate deployments to Poland in relation to Putin’s escapades, and thus our son needs our help with taking care of precious grandson!

Ok, Lord, we are looking forward to watching what You do! I am soooooo happy to be home! Hubby had the place all clean, and had picked some hyacinths and brought them in and put them in a vase, he had the blinds open, and I just loved all my color and comfort of home and hubby so much all over again! Weary but blessed! Our home is my sanctuary from the insanity of this world, and all the craziness life can throw at us.

Our youngest has finished two (USAF)deployments in the Middle East and just moved into his own off-base apartment in Lompoc, Cali, is starting Sgt training, and still working on his Mechatronics degree. Our oldest is busy being a great dad, working as an EMT, and after serving his 6 years and getting out of the army August of 2020, has gone back into the reserves. His wife is a wonderful mom and besides the army, she is working on her business degree.

Myself, I have lost 65 lbs in the past 2 years, gotten off of all but 3 meds, though I take several supplements, and at least until Mom’s surgery, I was doing better health-wise than I had in a long time. Even managed to do some selling online of my jewelry, until Mom’s discharge. That’s ok. There’s flexibility in that, and I can just build up my selling profile a little at a time.

My Mom complemented me on my patience while I was there last week. THAT is proof God is working. Nobody, EVER has commended me for patience before But, you know, in life, things we take for granted, get stripped away, and you either learn to accept the losses, or you rot from bitterness from the inside out. Patience gets to be part of that bargain.

When you can do, and you have energy and strength and can say “I don’t like to sit still, I love to stay busy” you can’t even imagine not being active.

Before narcolepsy, that was me. And sometimes it is hard to listen to someone who still has all that vitality. They often like to say things like, “don’t you think you’d feel better if you got out more?” You end up getting denigrated for what is a loss you already grieve. But there is a settledness about me too, a contentment I have, that super-busy people tend to notice, especially in our home.

I used to try and educate people around me. Now I don’t waste my energy. Either someday it will be them, and then they’ll “get it”, or they will never get it no matter how much effort you put into trying to make them understand.

My stuff is my stuff to deal with. I haven’t disengaged from what is going on in the world, but have less to contribute to that dialog at this juncture. I mean, what’s the life expectancy of a blog these days? So many that started when I did, are long gone.

One thing that my trips to WV for Mom have facilitated, has been time with my dear Aunt, Mom’s sister Jean. She is a Jehovah’s Witness. We have had a lot of conversations. I’m trusting the Lord that some truth breaks through. 30 years is a lot of investment on her part, but God can get through.
I have seen more of all my aging aunts and uncles. Those connections got lost when Grandma passed. Mom’s place has never been big enough for extended family to gather. Instead of us growing up and moving away, Mom and Dad moved back to WV when Dad retired, so the common denominators that bring families together on any regular basis, just haven’t been there. Like everything else, family ties just aren’t what they used to be. Fewer kids, fewer siblings bigger age gaps between cousins, and fewer cousins, period. Far flung addresses, fewer visits, even family we do have, we may not know well.

There are so many reasons I feel bad for younger generations. But they are a breed born for their time just like the rest of us, so I guess they’ll weather it. I am blessed and thankful that at the ages of 24 and 26, both our boys have expressed gratitude for the way we raised them. I think missionary Pastor Hester was right when he told me that “you don’t know but what your being sick all those years wasn’t the best raising those boys could have had. It taught them everything’s not all about them.” The same could be said for my husband’s work struggles. God knows who can do well with prosperity and who needs to struggle. He knows adversity can make a better man or woman than ease.
He is a wise God. He knows when to go easy and when to squeeze. He plans the seasons of our growth according to His design for each of us, and has His own vision of what He will accomplish. I am not my own project. I’m His. And you know something? How often do you hear that from a pulpit? Have you ever?

We get all wrapped up in our vision, our aspirations and goals. We may have spiritual ambitions, ideas what kind of Christian we would like to be. But the Bible says He who began a good work in you will be faithful to complete it. They say life is what happens to you while you are making other plans. That’s certainly true. Maybe sanctification is what happens to a believer when we are trying to be what we think He expects, only what He wants us to be is so far removed from what we think He expects, we don’t even realize what He has been doing until we start to get around middle age and above. In other words, God’s gonna do God, and if we are His, He’s not just occasionally intervening. We are each a continual work in progress. I’m not calling the shots. I know that better than some, because of things that have been stripped away, but there’s still plenty of carving, shaping, purifying, tempering….and when will that be completed? He doesn’t say. There are ages of ages yet to come. That’s why I tend to see this life as if it is practically only a second womb. Real life, for the follower of Jesus, hasn’t even started yet. But it’s always getting one day closer!

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