Our father, the icon, Jack Monkman, passed peacefully in his sleep this morning at 3:45am. I had been at the bedside for 11 hours, then went home for a shower and sleep and got the call three hours later.
Earlier in the evening, I had turned off both the motion detector devices on the floor the facility placed by the bed for patients who are fall risks. They set off a smoke alarm kind of beep when detecting nearby motion. All of a sudden an hour later, one of them started going off randomly across the room – no one had passed that area or even near it.
I figured Cindy announced her entrance to the space and a few hours later shepherded our father Home.
We will love and miss you forever Dad. And as I told you, we have John carefully tucked under our wings. All is taken care of. Be free. We will be looking for you when it’s our time- and in the meantime, we are going to enjoy every minute of our lives and take the Monkman name out in style.
I just finished listening to an Instagram Live where a man I admire and am entertained by daily (George Hahn) was describing someone else’s coming out story. He burst in to tears as he spoke of this and his emotion fueled my own. He talked about how courageous his friend was for making this bold move at this juncture of his life.
This all spurred me thinking about my gay brother, whose life I’m actively involved with right now.
When someone has a chronic mental illness (or any chronic disability really), they tend to get defined by just that. My brother, who is schizophrenic, for example.
When John first moved to AZ at my urging, nine years ago, he lived with me that summer and together we worked toward stabilizing him and finding him a meaningful life. He had been living alone–largely untethered– for years. Left to his own devices to find his way.
John had been out of the closet for decades at that point, but in many ways was living like he still was ensconced there.
When he came to live with me, I looked at his whole life and saw this gap; unrealized. I started investigating ways I could help him get involved in the gay community at age 50–bars were not an option, but what else was there?
That’s when I got the spark about the Phoenix Gay Men’s Chorus, pushed him to audition and we all know what happened there. He spent two years singing with them all over Phoenix and beyond. He even bought a tuxedo and learned, with his challenged brain, songs in Italian and Latin. Memorized them.
I find myself in the same boat here in Pennsylvania and we are working on it. We’ve been very busy the last three weeks getting him unpacked, settled in the house/community, my husband helped him buy a bike, sorting through countless items that were sent here that we are donating, on and on. It’s been very busy. But he’s met his neighbors and yesterday the nurse coordinator at the Assisted Living told us one of his neighbors was raving about how friendly he is. Today he explores the art class there for the first time. We are doing it.
The smoking issue at the house has worked out easily (it’s a non-smoking campus, so we got a house just feet from the property line and I got him a chair he can easily transport and he sits between two large trees and has his cigarettes–which has dropped off dramatically since he moved).
We got him his own large TV for the living room, so he can also have his own space in the house. John admitted he was taking so many smoke breaks because he didn’t want to always watch Dad’s shows and smoking got him his own space. My Dad will be basically living in the sunroom–we all know that. So we are shifting that with John having his own room for music and movies. It’s important he has his own life which is defined by his preferences/choices/style of living. I am adamant that he not become consumed with caretaking our Dad, which is what was happening in AZ. He has enough on his plate taking care of himself.
It’s been a busy and fulfilling time. My Dad comes out in about 2-3 weeks (my angel husband is driving him on an extended road trip in my brother’s car across the country), so we are doing our best to get as much sorted out and set up before he comes. There is a lot to it!
This week we’ve been christening his new TV with a Michael Douglas movie marathon. First, Basic Instinct and last night Fatal Attraction. He served me dinner that he made both nights. It’s been great.
Anyway, back to the George Hahn’s emotions this morning and my own. It brought me back to the time when my brother came out. He had his first serious psychotic episode right around the trials for Cindy’s murder. He lived in Minneapolis then, and traveled to AZ only one time for the trials–toward the end of one of them. It was during that visit that I noticed he was experiencing significant paranoia. I was a Psych RN at the time and came home from shopping with John and pulled my Dad aside and pointed out what I had observed. There was so much denial about that, even within my mental health professionals family. He had to fall much farther before he got proper help and it was during that acute episode that he also came out of the closet. I can only imagine the psychic pressure he felt holding his sexuality in for so long. He had been living out of the closet in Minneapolis for a few years at that point, unbeknownst to our family. Those were likely some of the best years of his life.
Cindy never knew he was gay.
I had one conversation with Marj–our stepmother–about John’s coming out and her response haunts me to this day.
“Well, you know, it’s probably the only community that would accept him,” she said, making it clear that she didn’t think his being gay was really real. He just chose that life because he didn’t fit in anywhere else. Ya think?
I wasn’t the person then that I am today. I was struck dumb by her words. I still respected her as a parent and authority figure, in my 30’s then, and was far away from coming to grips of the damage she had caused in our lives, in my life.
Now this woman was also a mental health professional–a PhD level social worker. And she had spent a lot of time with John that summer before his major break–she was teaching up in that area and would parlay visits to his home for weekends (he owned his own home he called “Little House in the Prairie” there). She shared with me that she saw him losing weight, that he had some medical issues going on that they couldn’t quite figure out, that she had accompanied him to various Dr. appointments but no real diagnosis had occurred. They finally landed on some vague chronic fatigue syndrome.
That Fall I was with John for a few hours before seeing he was completely paranoid–claiming security guards were following him around the Mall. Had she missed all of this? Had he been better about hiding it?
In reality, he was so paranoid about the AIDS crisis, that although he never tested positive, he started manifesting the physical symptoms of AIDS. It was the first glimmer of the closet door peeking open.
I have no idea what kinds of conversations happened between John and Marj that summer, but I do know that one line she said to me, which sums up the entire dynamic.
Marj was a politically progressive person, a “women’s libber” she would be called back in that time, yet her Deep South roots still clung tightly to her basic beliefs. She never accepted John’s homosexuality and God knows the ways she shamed him about it in her unique passive-aggressive way. I know how she shamed me —and Cindy–I know what she said to me about him.
As if John was such a misfit that he went out seeking a community that would accept all the misfits, because they were such misfits themselves that they would take anyone. That’s what I took in her statement–what I take now in it. It makes me shudder, but I’m sure not an uncommon belief.
It’s not easy to speak out about taboo things. Heck, it took me decades to speak out about Marj, and that started after her death in a private therapist’s office who asked me to circle back to something “your stepmother hit you?” after I glossed over it like it was normal family behavior. She held me to that fire until it all unraveled out. I always credit her for helping me see the truth in my upbringing--as she was on a quest to figure out the root cause of the reason I came to her–a debilitating anxiety disorder that stretched from my twenties in to my early forties.
Speaking out about her has not been easy for me either, but it’s been helpful and not just to me. My posts about hard subjects like that have garnered the most feedback from my readers here on the blog and in private. About their own lives. It’s important to bring things like this to light. But it’s been not unchallenged or fraught with losses, like George spoke about this morning with his coming-out story–necessary losses of relationships.
I was recently challenged about this with one of Marj’s sisters, now elderly, who had offered herself to me as a confidante for many years. A few years ago, I confided in her something I was very worried about, about another family member. I was needing help, as in many ways, I’m this middle child steering a ship I was never prepared for all by myself (until I met my husband who has been an amazing ally). I’ve navigated some very rocky waters with my family, alone. So at her urging, I reached out to her for help.
“Please, talk to me anytime,” she encouraged me. So I did.
I don’t know if it was the results of the election–she’s also still in the Deep South and we are at opposite ends of the political spectrum (as she was with her own sister). But she kind of lost her mind with me. Or maybe she just lost her filters.
I made a Facebook post about some feelings post-election and in this, I used an example of being a survivor of child abuse and speaking out about it to compare to whatever point I was making about recovering from the months of trauma surrounding those heavily-charged politics.
Out of the blue, I received a text from this former “step-Aunt”. Now, she had read the blog I originally wrote here about her sister (with a caveat and warning at the beginning that it was going to get real and difficult for her remaining loved ones so maybe stop reading there) and reached out to me in support back then. That was years ago. We never really discussed it, but I believed her when she said she had no idea it was happening. Such is the way of abuse in families–often hidden.
Imagine my blindside, when she vomited in to my text box claiming she was “sick of the crap” I was writing about her sister (as if I do it on some regular basis) and she threatened to expose the sensitive material I had shared with her years ago, about another family member “to friends and family”. She was specific too about how she was going to do that, I suppose, if I wrote any more “crap” about her sister. Of all the responses to her feelings about my post, this was the one she chose. A specific, detailed threat involving the privacy of someone else. Sad.
That “crap” she was referring to is my life story. And something I never asked, nor encouraged her to read. In fact, I steered her against it, knowing it would be difficult for that side of the family. I’ve never asked to read one word of anything I’ve ever written–on my blog, on Facebook, anywhere. She chose that freely on her own–even after being warned in a loving way–yet found a way to blame me for it. It all felt very familiar. Apples and trees, as they say.
It’s hard to talk about hard things. It’s not easy to keep talking about them. You will lose people, as I did with Marj’s sister. Her threats–a blackmail actually–told so many stories in one text that it was clear this was a person who was not–and had not been–safe for me to be around, period. Letting go of people is often necessary along the way to finding your freedom.
I accompanied my brother to his first Psychiatrist appointment here. That Dr. was amazing. After the sheer, scary incompetence of what he just left at the clinic in AZ, this was like gale force winds of fresh air. He spent an entire hour asking John about his history with me present. I was glad I was there as I knew–and it became obvious to the Dr.–that John minimizes things. I filled in many blanks for him and at one point he said directly to John “I see you have a tendency to sugar-coat things, and I’m not here as a person you need to impress. I’m here as a person to help you when things get their worst, so I need to know everything about how bad it gets.”. (Wow, I’m sitting there thinking, just wow).
John agreed and I was still surprised when the Dr. asked about childhood trauma (after John originally said “no” and I pointed out that we lost our mother when John was just 3–about as traumatic as you can get). He then asked “was there any abuse?” and John said “yes, our mother after Dad remarried”. Marj adopted us, so we were required to always call her “Mother”. As you can see, I no longer use that title for her, but my brother does and I’m not saying a word about it.
“Was it verbal or physical or….?” the Dr. asked.
With no prompting, John replied “it was verbal and physical”.
I was so proud of him that he could speak the truth.
I had not spoken with him about Marj and the abuse for years. Once during a really rough patch, he blurted out “you left me alone there with her for three years when you went to college Kathy–THREE YEARS!“. But beyond that, he’s been reluctant to talk about things and I don’t know what happened in those three years. I don’t push him on it–if it’s meant to be discussed it will be.
I just know that the last time she hit me, I got in the middle of her beating him and she turned on me. I was in college at that time and home for a weekend.
So he’s speaking out too. That’s good that it just comes to light. I didn’t ask him any further about that, as we are focusing on moving forward. But should he ever need to talk about it, he knows I know and am a soft place to land.
I decided not to tell him about the crazy interaction and ultimate severance of the relationship with Marj’s sister. My brother has few people on this planet who he feels connected to, and I am not taking any of them away from him. If she was nearby and I felt a danger to him in any way, sure. But, like her sister, her focus seemed more directed at me for speaking out, so I’m leaving it there.
But rest assured, I blocked her from all social media and from my phone number.
I may not have been able to protect myself from her sister then, but I know how to protect myself now. If she chooses to follow through on her blackmail, well that would just be a sad legacy for her to leave her descendants, but for sure it has nothing to do with me.
Anyway, here’s to telling the truth. Here’s to all the gay people I know (and don’t know) who have traversed all the obstacles they have to step in to their lives–freedom to breathe your own air is a great place to live.
You will lose people along the way, but you will gain more who vibe with who you are.
And God knows, my brother and I have had enough struggle.
It’s finally the time in our lives to be living fully alive–lives that our mother and our sister would be proud of.
It’s been awhile since I’ve updated here. We’ve been busy!
Not exactly sure where I left off, but I’ll start here.
My husband just got home from a 12 day tour to AZ to help “the Dudes” as he refers to my Dad and brother (lol, they love it). He set up movers, cleaners, junk haulers, attended several medical appointments for both of them, coordinated paperwork for various things and was basically their moving coordinator. He even convinced my Dad to get hearing aids and took him for those appts.
He extended his stay for an additional five days, once he realized more help was needed. He drove back and forth to Sedona three times, to retrieve belongings and get a little much needed overnight R and R himself. What an angel he turned out to be for our family.
About a year before meeting him, I looked forward to the landscape of my future and started to panic. One day I found myself pleading out loud to my sister “you have to help find someone for me who can help me with Dad and John down the road”.
Thank you Cindy. You nailed it in so many ways. He’s a great husband, companion, friend, cuddler, uplifter, Dad, as well. I really hit the jackpot with John David Higham.
So the current plan is this. Cleaners are coming to their condo tomorrow (this has been an enormous task–we haven’t been able to get people to work in their place without them getting it cleaned up–that’s all I’ll say on that subject). So once it’s cleaned, the rescheduled movers come tomorrow to move the pieces of furniture and boxes they are bringing here.
My brother then will fly out, alone, in early May, just in time for his Dr’s appt. three days later to make sure his medications are ordered in a seamless way. He will be here for a month establishing himself here, before my Dad joins him. That’s mainly because my husband is flying back out in early June to retrieve my Dad and my brother’s car and taking him on a long leisurely road trip across the country to bring my brother’s car back here. They are mapping out areas in Colorado, Wyoming, etc.
Driving across the country was my father’s favorite way of life for many years. He lived out of his RV for at least fifteen years and drove and drove all over. This will be the only way he can get that experience again, so my husband is creating it for them. It will be something to look forward to after months of hard work and lots of letting go.
My Dad is releasing his car, most of his worn out but comfortable belongings, in many ways his independence. He knows it will be his last move. So this road trip will be really memory-making for both of them. He adores my husband, so they will have a good time.
Did I ever write here that they share the same name, profession and birth date?
The month with my brother here alone will also be good for him. I’ll just say they’ve become like an old married couple with lots of bickering to go with it. I’m going to be working on my brother standing on his own two feet, feeling the independence of living alone without someone to have to continually care for, assess ways we can get help for him with the caregiving, and I think I’ve found a place he can sing with if he chooses!
I’ll spend much of that time creating his new life here with him. I did this before when he moved to AZ. He’s looking forward to shopping with me for the new place and asked me what stores we have here.
Let’s face it, he will be living in that home far longer than my Dad. It will likely be his last home as well. So nesting in to it as his own will be a good thing, I think.
We are in full set-up mode here too. We’ve received beds for them both, two power recliners with massage and heat and power lift, a new TV and electric fireplace cabinet for it to sit on in the sunroom and many other furnishings.
I’ve been working with the Community for various small repairs and additions. Trying not to do too much so they can set it up how they want, but create the basics for them.
We are all still working hard to get this move completed, but we have passed through the gauntlet of most of the obstacles.
I really don’t know how I would have managed this alone. John kept saying that to me while out in Arizona. Or doing this while balancing two full-time jobs.
I do know this. I’ve learned to be proactive in my own life. SO much of the crises and angst involved here could have been avoided if there had been cooperation and not procrastination. I will not dump on Lillian the things we’ve had to navigate. May this be a cautionary tale to anyone out there reading this as well. It’s just not fair to those who will be caring for you as you age, to hang on to independence far past your ability to care for yourself. It just makes things harder on everyone. John and I have already decided that the day we need to leave this house, we will see the transition as our next adventure and treat it as such.
In other news, the day my husband left, I decided to give our living room a refresh. I had updated our IKEA U-shaped sectional with new luxurious blue velvet slipcovers. I love them! But once they arrived, I didn’t like how they competed with the deep Navy (Benjamin Moore Hale Navy for paint nerds like me) wall behind the sofa. I spent hours contemplating how to best deal with that accent wall, as I loved how the art work played off that dark wall, but it just made the room too dark and not enough contrast with the new sofa color.
So this is what I came up with! I wrapped the rest of the room color (BM Gray Owl) and left that one strip of the navy in the middle as a cool color block.
Then I realized that Gray Owl is so cool of a color I needed some warmth in the room. So I ordered this cool arm chair for the nook in the corner, which will be my Dad’s seat when he comes over. There is no way he can get in and out of our low sofa without arms, so he always uses tall chairs with arms. So that’s what I got! Also a neat pouf ottoman he can use as a foot rest.
I added some gold velvet pillows and replaced the lamps with these retro looking teardrop wood-look lamps. I just set those up yesterday so haven’t taken a photo yet, but I will share once I’m feeling less lazy. 😉
My husband absolutely loved the changes. He’s easy to please when it comes to my home decor ideas with the exception of the wallpaper in the powder room but we don’t need to go there right now.
I also added this carpet of stars to the inside of our pergola. I just love it. They are solar so pop on every night on their own. They even look cool from inside the house.
We have one cold snap this week, then I think we are pretty in the clear for gardening. My back garden is in full color mode with my dozens of tulips, fragrant hyacinths and narcissus, daffodils and other Spring bulbs. Also my 6 peony bushes are coming up as well as dozens of huge lilies (I went crazy with lilies in the Fall) and my 6 garden rose plants, 4 of which are brand new!
I put a bunch of plants in pots this week, but will need to cover them tonight. I’ll be planting my snapdragon and lisianthus seedlings this week as well as pansies and lots of other goodies I picked up at the garden store last week!
My cutting garden is also going crazy with tulips and daffodils right now. So far I’m filling my house with cut flowers and figuring out what to do with them. It’s a learning curve. I think once my super fancy tulips come up–likely later this week–I’ll try selling some out of my friend’s flower shop. We’ll see how it goes! I’ve been gifting them here and there as well. 🙂
I have six more peony bushes there and five more garden roses and dozens more lilies for cutting there also.
So, flower season is well under way! I will be sharing them with The Dudes as well, of course!
Oh and how could I forget? My insomnia has taken a major turn for the better! I went on the sleep Dr’s program, including a medication (Trazodone) and it was getting slowly better. Then one night last week I found myself getting very sleepy naturally, so decided to try and do it on my own. I slept even better than on the Trazodone! So it’s been several nights now sleeping unmedicated and I’m getting better and better sleep every night, waking up refreshed and think I’m over that hurdle. Whew! That was months of struggle, now balancing out and getting back to something I recognize.
I’m so glad I didn’t go on Ambien as I desperately wanted at the time. I feel much more confident relying on my own body to do what it’s designed to do.
That’s it for today.
I’m deeply paying attention to the Derek Chauvin trial and think the prosecution put on an excellent case. I think we will get convictions this week. I hope so anyway. Justice for George Floyd. A bit of peace to his loved ones. Healing for Minneapolis.
Just a quickie to share, we got some very special keys yesterday!
As I pulled up to meet the sales person there, it was just in time as THREE of my orders I made just three days prior, had already arrived. And we got snow yesterday!
Now, my husband and I will get busy assembling furniture (rather, he will and I will hand him tools).
We got them a corner TV stand with a built-in electric fireplace for the sun room where they will spend most of their time. And a new frame and mattress for my brother.
Next week comes the matching recliners that have power lift, massage, heat, etc!
The place looks amazing. It’s been totally flipped since the last tenant–new flooring throughout, cabinetry, appliances, counters, paint, trim. It’s gorgeous! I’ll share more pics later.
I took both of them through a live Facetime yesterday room by room. Exciting!
It’s cold here today in Central PA. Woke up to snow on the ground! But my flowers are still thriving. I check my cutting gardens daily and so far, so good with the rabbits. Now hoping the raccoons and deer don’t find any of my blooms once they come up.
These are my first harvested ruffly daffodils. They are tiny, but so cute!
In other news, got my first Moderna vaccine yesterday. A sore arm, but nothing else really. My husband also got his vaccine, so I’m especially glad for that as he travels to AZ again next week to help my Dad and brother. What a sweetheart.
I’ll be here continuing to set up their lives. In addition to the home, we need to get them doctors and services set up. Working on that today! Luckily the Community has a nurse on staff who does a lot of that for people moving in. Many many excellent support systems built it–what a relief for all of us.
And my brother continues to be stable, which is amazing.
So far, things are continuing to look up, which let me tell you, is a welcome relief.
Have a great Easter weekend out there everyone. We got a spiral ham! 😀
I know it would likely be healthier for me to just let all this stuff with my brother’s clinic Terros go, and focus more on the productive aspects of his move, but I just feel like it all needs to be documented. And I guess here is the place I’m doing that. When I say documented, I also mean, exposed.
Yesterday, after a couple of emails to his terrible, inept case manager, she got back to me with this one line:
I called several times and was unable to leave a voice mail. He did show up today and I met with him.
This is her response to my question about how she expected my brother to show up for his appt. to retrieve his weekly meds (before running out) without informing him of said appointment. Of course the only reason he showed up, was because I spent nearly an entire day making phone calls trying to obtain information and finally getting the time and date for this appointment so he didn’t run out of meds (again). The case manager was unreachable, per usual.
It was also cc’d to her supervisor, as were my emails to her. Her CYA moment.
My response to her began with the sentence, “I don’t believe you.”
I called my brother’s voicemail and it’s working. I was in touch with him via my Dad’s phone all that day and he kept checking his phone for calls/messages and relaying to me what was on his phone.
She never tried calling, much less leaving a message. She’s lying.
But even if you take her at face value (which I don’t), her own story is she couldn’t get this critical information to my brother so she did nothing further. She didn’t try phoning my Dad to tell him (who she knows he lives with and has his number), emailing me, phoning me, nothing. But I’m sure she did document it as “billable hours”! The bare minimum she claimed to have done.
Also, while John was sitting in the waiting area yesterday, waiting for his appt. to get his meds, my father who was sitting a few feet away, saw the case manager “come out to retrieve another patient” from the waiting area and stop to say hello to my brother.
She has somehow parlayed that little breeze-by as a “meeting”. Oh I feel certain she documented it as billable hours as a full blown case management meeting. I’m also sure she didn’t realize, when she wrote me that email, that I was aware she had seen my brother in the waiting area as my father had already detailed the visit for me.
God I hate liars.
Anyway, John did fill out the paperwork to be transferred to another team. Hopefully that happens, because even if it’s just another month or so before we can extricate him, it’s still four weeks of having to live in that mine field.
The hospital social worker has escalated all of this too on her end and has been sending me emails about who is being informed of what. She’s not happy at all about this.
I’m just keeping records of everything and once John is freed from their clutches, a full report will be made.
Then I’ll be able to focus all my undivided energy on setting him up here. So many of his day to day activities will be met at the Community they are moving to. They are opening up their classes and activities next month after a year of Covid closure. Right on time.
There are all kinds of things he can get involved with from art classes to movie nights to special dinners to outings. My Dad is especially interested in the courses provided by visiting Bucknell professors and similar outings which they provide transportation for. It’s going to be so good for them.
We will also obtain case management for John here and of course all the medical needs, including Psychiatric. They have a medical liasion who is an RN at the community who will start working on getting all that set up for both of them before they even arrive. It’s pretty amazing what they offer. They will even provide them transportation from their home to the community building in a 6 seater golf court so they don’t have to drive over. They are walking distance from our beautiful library, which also hosts computer classes for my brother to attend. He’s super psyched about that as he’s been taking computer classes. We will get them set up with wifi and a laptop. Major upgrade.
All of these layers of support will be so welcomed. And it’s all underway. We should have the keys by Wednesday next week/Thursday at the latest. And I’ll be getting the supplemental furniture and furnishings set up. There will be champagne involved next week--my Dad requested a live Facetime session when we cross the threshold.
I dropped the check off yesterday, got the contract, just waiting on the last wire transfer and we will have the keys! We bought a bottle of Veuve Cliquot a few months ago, that we still have sitting in our wine frig. I do see us popping it over there in the empty kitchen. 😀
Also! My sleep is definitely improving. The Dr. definitely got my attention when he used some word like “psycho-physiology” describing how my insomnia got so deeply ingrained. He listened long enough and educated me well enough that I left there trusting him, which is honestly rare for me when it comes to doctors.
This morning I was reflecting on how familiar this felt to me–but on the other side of the paperwork.
During my thirty-year practice as a bodyworker, I realized I had a secret weapon.
I could get people to trust me very quickly. I don’t know if that’s just my normal personality, or a skill set I developed in that role, but I took my time, listening to every word they said, writing it all down and asking lots of questions in the intital appointment. I didn’t rush it and insured them their participation and input was valuable to me (which it was).
I then displayed (because I possessed) a deep, calm confidence that I could help them (if I did which was the vast majority of the time). AND that their body also possessed a deep well of information that would be our guide, which I would trust, to help them get back on track.
I always started the relationship with that confidence and that respect right out of the gate and something about that combination allowed my clients to trust me, and the process I was guiding them in to.
Most of the time when they found me, they were pretty desperate and in a lot of long term chronic pain. Had been through many things that had not been helpful. They were understandably skeptical.
But I knew that their trusting me was going to allow their guard to drop, and the magic would begin.
I always–every single time– coached them on not seeking improvement, but seeking change. That we were simply looking to break up the patterns of dysfunction, so their innate body-wisdom could sneak back in through those cracks and start taking over.
I’m glad I’m writing this all out, as I rarely think about my prior life as a therapist. But this process is exactly what is occurring for me now.
I may not have fully felt confident in trying this non habit-forming medication (for a relatively short time–my goal is to get back to sleeping and get off all medication) as I tried two doses before, didn’t sleep and felt like death in the morning.
But I did leave feeling like I trusted this doctor and I would submit to his expertise. He runs a damn Sleep Center for God’s sake–how can I rationalize not trusting him?
Since I made the decision to trust his guidance, do exactly what he said, and know that what’s happening is as much a deep psychological problem as chemical (not saying you can just decide to change these kinds of unconscious patterns by just deciding to–you have to let go and let your mind decide on its own to shift) I have started sleeping better.
He said the morning grogginess would start fading in about three days and I woke up today feeling pretty chipper.
I guess what I’m saying is it’s all about trust. And all about just letting myself be steered, then the magic starts happening. I’m stubborn. This is big.
The very first time I took this med a couple weeks ago (prescribed by my wonderful nurse practitioner), I lay wide awake tossing and turning for five hours then was a zombie the next day. The next night, basically the same thing. I gave right up on it.
But now, I’m sleeping 2-3 hours at a time and getting pretty easily back to sleep. It’s changing and getting better. I’m feeling hopeful.
Those are the great ends of the spectrum.
The tail that’s dragging though is the care my brother is receiving which is abysmal.
He got up yesterday and right away called his case manager, leaving a message on her voicemail that he needed an appt. with the nurse in order to obtain his meds. I know he did this because I was on the phone with my Dad and heard him in the background leaving that message.
He went all day not hearing back.
I wrote his social worker from the hospital basically detailing how her discharge plan fell off the rails with Terros right out of the gate, really just to let her know and to document it. I ended my email saying I did not expect a response, this was just to inform her.
She wrote me back, appalled, sent my email to the director of the whole shebang and gave me a number for the Clinical Director of John’s entire clinic. Oops! That lady did not end up liking that one bit.
I called the Director who let me know she would get right on it, make sure he had his appointments and the best way to get the information to him. I asked her to email me as John has a new phone and is hard to reach. I would make sure he got the info.
Mind you, he runs out of meds on Monday. It was Thursday and they are closed on the weekend. We have one day to get him in there–Friday. She assured me it would be settled by the end of the day.
The end of the day came and you guessed it–nothing.
I called her cell phone again and could hear she was driving. She was annoyed. Asked for an update and she said she had punted it to the terrible, incompetent case manager. I let her know John had called her and heard nothing. I reiterated he went in the hospital for five weeks because he went off his meds and here he was set to run out of them.
She said they were on it. I had a few choice words about the case manager like “incompetent” “terrible employee” etc. and the phone call ended abruptly. I’ve simply had it with these people. I left that thinking it all trickles down from the top. Even the Clinical Director doesn’t care about the patients there. I get it.
So I ended up calling back to the clinic to get anyone, absolutely anyone in the building who could facilitate my brother picking up his meds the next day.
I finally got likely the one and only competent person in the facility, who looked him up and saw he indeed has an appointment on the books for Friday at 10:30.
But no one told us that. And it was the next morning. They went to the trouble to schedule the appointment, but not tell the patient.
How did they expect John to be at that appt. when they never informed him of it? Look at all the great lengths I went to to simply get that one nugget of information.
The case manager kept saying in the heated staffing on John while he was in the hospital “well he didn’t show up for his appointments!” as the reason his medication got messed up.
I get it now. She does the bare minimum on paper, to prove those billable hours, then no follow-through with the actual patient. She scheduled the appointment, but never told us about it. So when he doesn’t show up, he gets marked as a no-show and no one questions it. Ya know, these unreliable mentally ill people.
I want to scream.
I got super sad yesterday thinking of all the other people under her who she’s playing this game with, who are getting sicker, not getting services, because they don’t have someone like me hounding her to do the basics of her own damn job. And even her boss at the highest level doesn’t care. It’s a very dangerous trap.
We have about a month to navigate this I think before getting him here. I spoke with John yesterday and we both agreed he can and needs to ask for a new case manager for just that month. This woman is unsafe.
So he will be doing that today when he goes in to get his meds. Even if he gets a similarly incompetent person (as I said to my Dad, I truly can’t imagine anyone being worse than her), it sends a message.
And when this is all over, my Psychologist husband is doing something called “red-lining” this facility. I think the social worker at the hospital is engaged in something similar. At least we will be out of there, but in all good conscience for the rest of their vulnerable population,we have to speak out.
Ok, with that all being said (much of the reason I document on here is also to keep a written record), this is a gorgeous day here. I’m so happy and relieved we can start moving them here in a concrete way now.
I have so many thoughts of my Dad sitting on my patio, enjoying my flowers doing his crossword puzzle. Inviting my brother over for TV watching and pizza. Country drives showing them all these views I’ve grown to love. Simple pleasures like that.
Knowing my Dad will get to live out his life in this kind of comfort is such a relief to us all.
And when I thanked my husband the other day for so much help he’s giving my family he responded “our family”.
You see his parents died so young (both were gone by the time he was fifteen), he never got to experience an aging parent situation. He considers this a gift. He’s a true gem of a human. Of all the disastrous choices I made in dating–which were admittedly about 99% of them–I just needed one good choice and I nailed it.
He heads back there in a little over a week and will handle most of the logistics they need on their end. Then we will fly my brother (and likely their cat) out here, and my husband is going to drive my brother’s car out here, taking a cross country road trip with my Dad. They are both really looking forward to it.
Thanks for coming along for the ride everyone. It’s been a circus, fun-house, roller coaster and glorious ferris wheel all wrapped up in to one.
And my shingles are almost entirely improved. Hooray for no long-term effects.
Well, my brother has been out of the hospital for two days, and as of his appointment with the Outpatient Clinic he doesn’t get gets services from, and they have managed to drop the ball right out of the gate. Yep, looking straight at you Terros on Priest. I can’t say I’m surprised. At least they are consistent.
He was given a week’s worth of medication from the hospital, with a required followup within 72 hours at the clinic, which he got. However, Terros managed to let him leave the clinic yesterday without giving him any more meds, which was the sole purpose of his appointment. Gee, I wonder just how he ended up messing up his meds which caused this crisis in the first place? So, now, he’s out of meds as of Monday, and no one there seems to notice or care.
So…they told him he has to “call back tomorrow” to try and get an appt. with the nurse there to obtain his required meds. He will likely call back today and be told there are no appointments available. It all completely stressed my Dad out to the point he walked out and headed to the car and called us later extremely upset.
In addition, he has to have blood tests completed each week in order to obtain his meds. And he has no followup lab appointments. Honestly, I don’t know if they even have the balls to drop. They are just phoning it in at this point, while obtaining the funds for my brother who is on their books. It’s maddening.
On top of that, the Continuing Care Community here has still not given us the go-ahead, although they have all the required documents, and we’ve hit the marks they asked us to and yet have still not green-lit us to have the house. I expected it by Tuesday this week based on everything they’ve said to my husband and I.
Which is also not good for my Dad’s head (or mine, for that matter). I broke down and said we simply need an answer by the end of this week or we, sadly, will have to pursue something else. Another community is actively pursuing us, but it’s much farther away. It’s not fun to feel strung along, although I don’t think it’s exactly what’s happening, but how it feels. I think they are having some communication breakdown issues (which is also not confidence-building for the organization), but man, we’ve been on this for almost two months. I never thought it would be this hard to give someone that degree of money.
Once we have a solid place for them to land here, we can start a solid process of moving them, thus extricating my brother from Terros who has really been a source of danger for his stability. I’ll likely have to make some phone calls today and am contemplating requesting a new case manager, as the one he has is pretty impossible to deal with. I just can’t wait to get him out of there and in to a simpler situation here, but they hold the cards in AZ right now and it’s not at all a comfortable spot to be in. He had such stellar care in the hospital, that although we anticipated this based on years of history of their incompetence, it’s still shocking to be living it.
My Dr. appt with the sleep specialist went ok. It’s not an easy fix, which I kind of wanted. But after a lengthy, informative discussion with the Dr. about my sleep issues, I had to come to Jesus with myself and my belief systems about health and healing and realize the goal is to get myself relying on my innate systems to help me sleep. And that won’t be fast or easy, but there is a plan. In other words, I’m not going on Ambien or any meds like that.
This is going to be a real psychological as well as physical confronting the deepening rut I’ve found myself in regarding insomnia, and taking some time with it. I slept better than I anticipated last night with this plan, but I’m groggy and sluggish and just not feeling great this morning, which likely explains the tone of this post.
I hope to have better news tomorrow. I really hope we don’t have to start all over again with looking for housing for my family–my husband is very optimistic we will still get what we are hoping and planning for. I’m doing my best to jump in to his wake.
I’m just weary.
And too lazy to find and post any photos.
But the good news, is the rabbits seemed to have stopped eating all my tulips in the cutting garden.
So in this sea of limbo, I’m at least accomplishing that.
Edited to add: WE JUST GOT CONFIRMATION ON THE HOUSE!!! HALLELUJAH!
John was discharged yesterday and is happily home. He was doing great yesterday–my Dad was more anxious than him, trying to sort out his meds. I’m sure he’s suffering some form of PTSD after going through up close and personal what we all did five weeks ago.
Hopefully we hear back from the Continuing Care Community today about the house. I sent them the beautiful letter the hospital sent on my brother’s behalf, along with his med list which is amazingly simple, considering.
I dreamed about trying to find a key last night and it just being out of my grasp. Duh.
I hope to update with jubilant news in my next entry. This living in limbo is for the birds.
Speaking of birds, (loose association alert), I think my homemade rabbit repellant spray just might be working on my community cutting garden. They did nail an entire section of my tulips though. 😦 I’ll know for next year.
My neighbor loaned me her big garden owl that I plopped in the center- so today I’ll head over to obsess check again.
Oh! And one of my peony plants peeked out yesterday.
Well, we are still in a fast time of change, but things are realigning more and more and less disintegration each day.
(Not gonna lie, that was a brutal phase, though)
It’s gorgeous– still crisp and cold–but sunny here in Central PA. I took a long, winding country drive yesterday to pick up some packages of smoked cheese from a vendor I met awhile back. He smokes everything and his smoked cream cheese is just nirvana.
I’d never been out his way before, as I met him at a fair, but I welcomed the outing and the views while catching up on a bit of news. I’ve been limiting my exposure to news and things like that lately. I even took the Facebook app off my phone awhile back. I know; shocker.
Checked on my 2000 or so bulbs in my cutting garden and dammit, those rabbits are feasting on my tulip shoots. SO, I brewed up a nasty spray that will hopefully be a repellant. I put a bunch of garlic cloves, red pepper flakes and dish soap in some water and sat it in the sun. I did my first spray last night so please please please bunnies, find something else to eat. They don’t seem to like my daffodils though, so there’s that. This is at the community garden plot and a total experimental flower garden this year, so I guess this is part of the experimenting!
My brother called me yesterday and we had a 26 min. conversation about everything. Mostly the move and their new home–fingers crossed that we get it, which is looking really good.
I love his social worker at the hospital. I told her that the Community we are planning to move them to will just need to see his discharge records from this hospitalization to finalize things. So, on her own, she decided to craft a letter on his behalf along with his doctor. We should finalize things there in a few days, but I’m feeling more optimistic each day.
Sometimes I wonder if staff in these facilities are so unused to their patients having family who care so much about them–and advocate so strongly for them–that either we’re a breath of fresh air or a pain in the ass. Both, I suspect, depending on the person and the quality of care they are delivering.
I feel certain he will be discharged tomorrow and I think everyone is ready for that. Including my Dad. It will be a transition though, and a delicate time.
I’m sending him a celebratory meal tonight–so far I’ve sent pizza, then Chinese food (which he loved), so he asked me to surprise him for tonight. So….drumroll…..his going-away meal is Mexican (shhh, keep it a secret). I was literally drooling looking at their menu and all the seafood options they have. I did add a grilled shrimp taco to the order (I want that).
So…onward we go. Today is another gorgeous day out there, so I’ll be outside pruning in my home garden, then doing my Mr. McGregor thing and see if my tactics were successful.
And I’m gonna cook something today. Not sure what, but it will be delicious.
Well, things are continuing to progress forward with a spiral momentum, that sometimes pulls back to catapult ahead.
Today is an ahead-moving day.
Yesterday I got out in the rain to do some errands and decided to go look at a couple of condos in the area we are considering as a back-up plan for my family, should the Continuing Care Community we are pursuing not be an option.
I saw this cute condo with a beautiful view in the back that had been on the market awhile. I did note LOTS of cars in front of it though…hmmm. I called anyway, and didn’t get a return call until this morning. More on that in a bit.
Also saw 4 new builds in that community. The notion of just moving there here in a lateral style move–exactly how they are living now--forfeiting some support structures, but also eliminating the hoop-jumping and uncertainties–sounded appealing.
We have not broached the condo idea with my father, but are broadening our options. We just know we need to move them out here and there has to be an option. Also this being in limbo with the retirement community for over a month now, is, well, on my nerves. And I don’t have many functioning nerves left at the moment (the shingles is improving though).
So I got home and as usual, had a full processing session with my husband. I was leaning more toward the condo option and he more with the community option. We landed in the middle, that should the community give us an open door, we will walk right through it.
Later, on Facetime with my Dad, he just offered that outright without us asking–that he was hoping it would work out with this close community–that the other one we’re also in communication with is good, but “ten miles is still a lot compared to less than one mile” (distance from our home). I mean I could bike to their house easily if we get it.
We decided to stop waiting and call for information as to how they were leaning. I felt pretty discouraged when I left the last phone call, but I was generally not in an optimistic place–unusual for me–that day. I felt like our odds were about 50/50.
My husband relayed the info from his call with sales person and thought we were really pretty much a “go” with them. But still, we have no contract or have not given a deposit.
I decided to call her myself. I realized that she doesn’t exactly know either–that she was making assumptions based on that meeting we had with the CEO–but she was left with a distinctly more confident impression than I was. I finally just said “we are riding a momentum here, and we need to get them moved, so I’m going to be honest, I’m pursuing other options right now as we need something we can count on.” Assuring her I understood if John was not a fit for their community, but we just need to know.
It’s good to just tell the bald faced truth sometimes.
SO, she leapt in to action, decided to meet face to face with her CEO this morning, and boy did she not waste a minute calling me after that meeting.
She feels like “it’s a go” at this point, that they just need discharge paperwork on John once he’s out of the hospital, which I can easily obtain, and then we can move forward with the contract.
Whew! Huge relief. I can’t wait to tell my Dad. It’s definitely the best option due to one very important word : LOCATION LOCATION LOCATION.
That will just simplify so much for us.
And catch this. The realtor finally called me back this morning on that cute condo with the view. Those cars were all there yesterday at the exact moment I was passing, because they were doing a closing on it. And check this–the woman living there sold it, because she’s moving in to the same community we are getting Dad and John in to. BOOM! Even the Realtor noted the “irony” in all of this. Irony to her; serendipity to me. I was literally sitting in front of the condo as they were closing on it inside.
John is being discharged Monday–I’m glad they pushed it back a couple of days so they don’t have to traverse a weekend with no services should they need them (as skimpy as they may be).
And my John is headed out there in less than two weeks to be boots on the ground prepping for the move.
And I’ve slept (assisted, but still) the last two nights. AND got my appointment with the Sleep specialist moved up a week.
AND the sun is shining today, in beautiful–still cold–central PA.
Sprinkling in some photos of this zuchinni pasta dish I made from Stanley Tucci’s CNN show on traveling, and eating, through Italy. It was delicious! And while eating it, I looked at my bald, cute husband in his black T shirt and said “It looks like I’m even eating with Stanley!”.