Is removing all meds a common hospital experience, or does this hospital have issues

[DebJ]

25. Hi Steve. Thanks for asking.

I think only someone with medical experience can understand the implications of what I'll relate below.

Immediately after my son was released from the hospital, I received a call from my sister in North Carolina, where my parents moved two years ago, stating that Mom (age 86) was not expected to live through the next two weeks. I immediately began making preparations to go there (an 8 hour minimum drive from my house in Pa), to be with my Dad. My parents have spent almost every waking minute side-by-side for almost 30 years now, since Mom was hit head-on by a drunk driver just before her 60th birthday and put into a wheel chair for life, with numerous complications. I don't see them as Mom and Dad anymore, but as MomDad; she breathes in; he breathes out. She went into a nursing home in early April with severe dementia, not eating, etc., and Dad spent every day from April through September 1 by her side there, from 730 am until dark, never leaving her side, and saying he went so early in the morning because he wanted to be the first thing she saw when she woke up, as had been the case for over 60 years. He tried to get the nursing home to let him stay there 24/7. Losing Mom will be incredibly difficult for my Dad.

"Making preparations" for a week long trip is a big deal. My husband has chronic kidney disease (at the border line of levels 3 and 4), diabetes type 2, and some heart muscle loss from a prior heart attack, and other associated medical issues. To keep him at level 4 as long as possible and off dialysis, I designed 15 daily menu plans accommodating his many dietary restrictions, and tailored to his own food preferences. I weigh, count, or measure every bite of food that he eats, and he eats 6 meals a day. I can only set up his food for a max of 7 days out, or it spoils. But that is 49 meals/snacks to make for a week, and it is a big deal to accomplish, especially since I do every possible food item from scratch to avoid excess potassium and sodium and to actually KNOW what the ingredients are that he is consuming. A lot of work, but it has been worth it since his nephrologist remains amazed that 3.5 years into this diagnosis, my husband is still stable and not on dialysis....his values have remained at 28-32 all this time, though recently more like 29 percent of kidney function.

I was also trying to time my visit to NC with a best guess, since I'm limited to 7 days, to hopefully be there with my Dad WHEN Mom passed away. But Mom passed away on September 1, before I had left home. (I had just been to visit her a few weeks before, and I have always made it a point to visit as frequently as possible (especially when she lived 3 hours away for all but the last two years), and to call her every day and sometimes even more than that, so I was okay with this.) My sister arranged the funeral to be on Friday the 4th, due to Labor Day weekend complications, and so I had to shift plans and rush to get to West Virginia for the funeral services and burial.

Then I had to return to home in Pa, and re-do the food planning so as to go to NC to be with my Dad for the better part of a week. My siblings #3 and #4 went to NC on the 7th and 8th and were there through the 11th, so I planned to go the following week, after they left, to give Dad a longer time of support. And I needed a week to recover from my son's recent issue, and my Mom's passing.

Our 83 year old Dad was just formally diagnosed with dementia in mid-August, and a few weeks before that, he had totaled his brand-new van, and now, he lost his wife and buried her on the day of their 61st wedding anniversary. My sister that he lives with is handicapped with many complications of Marfan Syndrome, her Mother In Law lives with them too and she has Alzheimers and requires assistance, and my sister has to spend almost the entire afternoon in bed because she has had the majority of her spine fused together to keep it from collapsing on her and crushing her lungs. She's 58 but has been in this situation for some years now. To top it all off, Dad has always been someone who is constantly on the go. Over the past decade, he's just gone to restaurants and Walmart and other odd little places, but the point is he is a person who needs to keep busy; his habit is to be out of the house no less than 4 hours a day every day. In fact, he walks faster than I do and it is literally painful for me to keep up with his walking pace! He can't drive himself anywhere for now (he has to pass a driving test in NC now, post-accident, and he failed it once already); and my sister won't take him much of anywhere, leaving him alone, without Mom, to stare at the lonely walls in her house all day and evening most days, now without Mom's companionship. My sister lives way out of the city limits, at the end of a road with just a few houses and no contact with the few neighbors there, and her house is surrounded on two sides by a forest. No companionship or even chatting available for Dad outside of my sister, who is unavailable from about noon until 6pm and also not available when she has to escort her MIL to doctor visits.

So I wanted to be there with Dad after my other sisters went back home to Md and Illinois. I spent Sunday the 13th on the road all day to get there; then I stayed there until Friday morning, spent Friday morning on the road all day driving home. I had a fender-bender on the way home... no one hurt, no car damage (not even a fender bent, really), but the guy I hit decided he wanted to extort money from me and so he tried to blame my gentle bump in his rear as the cause of clearly ancient damage to his trunk, which would not close. I got home late because he called the police to file a report and we had to wait around. The officer was professional but refused to charge me with a ticket saying it was 'no big deal'. I let into this creep in the gas station parking lot and told him my parents raised me with integrity, and I raised my children the same, and people who try to lie, cheat and steal make life harder and more expensive for everyone, while a group of spectators sniggered at this sad excuse of a human being I was yelling at. That was cathartic, at least. I got home, collapsed in bed, and then had to leave for Virginia the next afternoon into yesterday evening to be with my grandson for his 5th birthday party, and on the way home, drive out of the way to Sister #3's house in Maryland to drop off some of my Mom's possessions that she wanted. While I was in NC, I had helped Dad with the difficult process of removing Mom's clothes and personal articles that he didn't want, and my van was packed floor to ceiling. I didn't get home until 8 pm.

And so here I am this morning, just trying to catch my breath and catch up on sleep. But before I can I have to discuss some things with one of my husband's many specialists for a pending doctor visit tomorrow (he has an oncologist, cardiologist, nephrologist, GP, foot specialist). I have to check up on my Dad by phone regarding his several doctor appointments and driving test this week (and buying another car if he passes his driving test) plus several other issues for Dad. I have to complete my accident report with the insurance company, and our income taxes have to be completed by the extended Oct 15th date. I've been out of town so much the last 8 weeks that the house is a nightmare and the kitchen is bare, and my several vegetable gardens are ghostly dead piles of brown that are an embarrassment to my neighborhood. All the trips out of town for these family emergencies blew our very tight budget out of the water, and so much juggling must be done to get by until November, by which time we hope to be back on track. And I have to follow up with the Frederick hospital about my son's experience. It might be awhile before I can locate my notes with my son's hospital's contact person's name under this stack of accrued mail and other assorted papers that have been pushed aside on my desk for too long while I was running to NC, WV, Va, and Maryland, and getting very little sleep. But I will do it, or there will undoubtedly be a recurrence of this within the next 12 months for my son, and maybe going on right now for other helpless people seeking help at that hospital right now.

I do have an appointment for myself on October 8 with a psychologist to get trained in some stress management techniques, like biofeedback, etc. And to just have an ear as I try to switch gears and get my own life and health back on track after the roller coaster ride of the last few years. Mom used to be my ear, my best friend, and she is gone now. My husband, my son, and my sisters are all too needy, and my own cup needs to get refilled so I can continue to give what they need of me. Our two good friends are themselves in very stressful states, as they are school teachers in a district that has targeted all senior teachers and is harassing them continuously in an attempt to get them to quit so that they can hire new inexperienced teachers for less money (an ongoing hell of the past three years thanks to Governor Gashole Corbett who slashed the education budgets mercilessly here in Pa). Our shared times with these friends need to be fun times, not mourning times, so I'm going to a professional for my outlet. I'm not in bad shape, really, not all sad or down in the dumps or any of that, just very tired, far too busy, and needing an ear. Democratic Underground has been a big help with that, too.