2016 update
The following is an email I sent MizJ yesterday…
“This is as I sent to the family in mid-August.
I’m very sorry this has taken me so long to write. I have to tell some things that I’ve been trained my whole life to never discuss and doing it is the hardest thing I’ve ever done. You’d think discussing things with Mom’s doctors would make it easier, but family is so different. I’ve had anxiety attacks on and off since puberty and they’ve come back since April. I’ve already cried through a box of tissues and I haven’t even begun yet. Funniest part is I don’t actually know how much of this will be news. Mom and Dad may have told you at least some of this, but I was supposed to assume no one knew any details.
A quick pre-note: I will be forever grateful that I was able to know Mom and Dad as both ‘Mom and Dad’ and as ‘Tom and Diane’. Yeah, I had ‘hurt little kid’ feelings, but once I was able to see them as just people, not Important Unquestionable Omnipotent Authority Figures, I not only forgave them for the ouchies, I realized there was nothing to forgive. They made mistakes just like every other person who has ever walked this planet. Fate scars us all. They weren’t perfect and neither am I. Heck, I didn’t even have the foresight to come with an instruction manual.
The polite way of saying this is that Mom has always been set in her ways. When I was little (pre 10) she cried a lot, almost all the time. She would decide something should be a certain way and if it wasn’t, she would go brittle and silent, or weep for hours, or stomp about fixing it in any way possible, or even occasionally slamming things and yelling. I got spanked a few times while growing up; she never touched me that way, but we used to have several patches in the walls where she’d punch through the drywall. I tried to help, but the only one who could reach her when she was like that was Dad. They were the world to each other.
Since I grew up, I’ve wondered if she has some level of ocd or perhaps is bipolar, but I hate throwing out terms like that without an official diagnosis. She would obsess about making a perfect life for Dad; for the house to be perfect, the food perfect, me perfect (fat chance) and would work herself beyond exhaustion trying to achieve it. She would get terrible headaches that would last for days.
The one thing I do know is that she was repeatedly molested by one of her grandfathers. He was abusing both she and Annie, pitting them against one another. They didn’t even know it was both of them until they got in a shouting match at Granny’s when I was 9. He would praise one to high heaven in front of her parents while berating the other. I think that’s why things were so horrible between the sisters. It was so bad that Ann made arrangements so that Mom didn’t know she had died until I got a notice that the state was foreclosing on Granny’s house for taxes.
The headaches came so often that Dad made her see the doctor. He put her on Emperin threes (like Tylenol threes only with aspirin instead of Tylenol.) She took them for literally decades. Dad and I did wonder about it, but she had a prescription, right?
In the 80s (I wish I had an exact date, but the records were lost in the fire), Mom’s vision was dimming. Like both her mother and I, she is blind on one side from birth, so losing vision in her good eye was scary. She eventually got sent to a specialist who gave her a very early MRI.
His diagnosis was that she had a brain tumour roughly the size of a golf ball, located directly above her pituitary gland. It was wrapped around her optic nerves and was cutting them off. He said without surgery, ‘she would not live long enough to see Shawna graduate from high school’. His plan was to cut the top of her skull off, lift her brain, then try to cut as much of the tumour out as he could, but that complete removal was impossible and it would start regrowing immediately. He gave her a 50% chance of survival, but the odds were very much against her being able to return to a normal life.
Dad wanted her to have the surgery but Mom refused. Her opinion was that maybe it would shorten her life, but that the shorter life would be so much better than the longer one. He wasn’t happy, but Dad agreed to her wishes. After that, she refused to fly in a pressurised plane, use a cell phone, or allow any further tests on the growth.
In 1992, I was working on a sampler for Granny and Grumpy’s 50th anniversary when I got a call from the police. Mom had gotten arrested for prescription forgery. Dad never got angry, just headed out to get her from the police station to a hospital recovery program.
What had happened was that the original doctor got Mom hooked on codeine. Once she was hooked, he would write her all the prescriptions she wanted for $50 apiece. When he eventually retired, he sold her his prescription pads and taught her to forge his name. When she had went through them, she lifted pads from our current (at the time) doctor. She got caught because they were finally putting all the prescription info through a computer system.
She knew she had a problem; had even worked on cutting down to just a few pills a day (she confessed to taking more than 30 a day at one point). She completed the treatment program, the judge changed it all over to the special laws written for ‘mother’s little helpers’ and was ‘sober’ until the last couple of years.
Yeah, I’d better address this. My discovery out of this was that I am a classic co-dependent. I was the one who filled in the blanks, covered the bases, cleaned up messes. Not easy when I was a teenager. I was accused on multiple occasions of being an addict. I might have caught onto the truth, but I believed she was on a prescription, so it never occurred to me to question it. This is part of why telling the story hurts so much. Everything in me is screaming that revealing anything is heresy.
After Dad died, Shawna was concerned Mom might go back to using, but by then her vision had degraded enough that she could no longer drive. She barely left the house. We knew we wouldn’t get any for her and since Shawna lives with her, she couldn’t get any from anyone else.
Her earlier fears and phobias returned with a vengeance. I promise you all she wanted to see you desperately; she would make plans and promises, but every time at the last minute something would come up. Her back hurt, it was slippery out, she hadn’t found something good enough to wear. The only one who could ever get her past it was Dad. I’m sorry I didn’t have the skill.
Koschai and I came for a while, but as she shut down more, I got afraid of being several hours away. I kept trying; she’d go along with it, then veer away at the last minute.
A couple of years ago, Shawna texted me in the middle of the night. The pain in her back had gotten dramatically worse and she was having ‘stomach problems’. She had called an ambulance and gone to the hospital.
The diagnosis was an abscess in her colon, probably due to intestinal damage from her years on codeine. They wanted to go in and cut out the damaged area, but Mom refused. She said she would die before she would allow them to put in a colostomy bag. The doctors told me they would try to fight off the infection with antibiotics, but that the surgery was inevitable. They would have to release her, but tasked me with talking her into the operation.
I got her in with my doctor at the time for maintenance (antibiotics and tramadol) and set up the surgery. When we took her to the pre admission meeting, she stormed out, yelling about voodoo doctors trying to kill her. As long as she wasn’t near a hospital, she seemed normal. Her memory was going, but I was told it was just age taking its toll. Her temper was getting more and more uncertain, but I had promised I would try to let her live her life by her own terms, my approval not being a requirement.
About this time last year, I got a letter from Mom’s doctor (Koschai and I had to change due to his insurance). She was switching to a different speciality and couldn’t see Mom any more. Mom was happy about it until she realized the pills would stop. She demanded I find her another doctor to keep the pain controlled.
I kept trying but it was impossible. I needed a doctor who would accept Medicare, would give prescription pain killers and not demand Mom have the surgery. From the medical position, that is ‘drug seeking behaviour’ and I couldn’t get anyone to take her.
I visited at least once a week and Mom was never short of cordial, but it was tense. She seemed to take my failure as an attempt to thwart her plan. She was more distant every time I was there, complaining about food, weather, television, but nothing of real substance. Both Shawna and Greenstreet (a family friend who’s been living at the house for about three years) assured me she was doing just fine; that she was her normal self. She would complain about never getting out, but every time the guys would arrange something, it just fell through.
Greenstreet was the one who texted me and rode to the hospital with Mom back in April. By the time I got to the hospital, Mom was already in surgery. I demanded to see (and was shown) the consent form Mom had signed. She had ruptured her colon and the surgeon gave her a 50% chance of survival.
You know a lot of the story from there. I’ve been the one the medical people come to for consent. Mom always insisted she wanted a ‘dnr’, but she agreed to the initial surgery, so I’ve tried to use that as a guide. I let them put in a kidney shunt because she’d developed kidney stones, but I would have refused a full trach tube.
Not long after she woke up, they moved her to a secondary hospital. It was kind of a halfway point; she didn’t need to be in an ICU, but wasn’t ready for therapy yet. She asked me to limit visitors to Greenstreet and immediate family or I would have given an all-clear to see her. Several problems came up, but I was told it was all because she was depressed as people frequently are after a huge surgery like that. The infection was still raging and she was heavily sedated, so I wasn’t supposed to worry. She pulled every single tube out repeatedly, despite being in full restraints. (She pulled her catheter out three times in one day.) She kept wriggling out of both her bedsheets and bed clothes. When I would talk to her, sometimes she knew where she was and why, but mid conversation she would insist she was in jail. She’d lost the house and could never go home again. Then she was on a train, sometimes a plane. She’d demand I reposition the red couch she was resting on. It was incredibly scary, but they kept switching drugs and amounts and most of the scarier parts seemed to stop.
Eventually they decided she was ready to be moved to a care facility for therapy. The initial plan was to get her home.
She seemed to stop thinking she was on planes or trains, but sometimes thought the facility was some hotel. In all honesty, she wasn’t in la la land, but she wasn’t right either. Koschai had to send me into the room first because she kept taking her clothes off. She refused any therapy, insisting at her age she shouldn’t have to do anything she didn’t want to. She refused to even look at her colostomy bag, let alone learn to deal with it. Looking at it in isolation, alarm bells are screaming, but as it was happening it seemed like she was making progress. The staff kept assuring me it was the drugs and she’d get better.
She stopped pulling out tubes, but refused to call for help to use the toilet. As a result, she fell several times, once requiring a trip to the main hospital to be examined. (They are in the same complex.)
Koschai and I managed the jungle of paperwork and got Mom both Medicare and Medicaid, but Mom’s refusal to do any therapy was putting that in jeopardy. Shawna, Greenstreet and I took it in turns to visit every day, but she would demand more and more Coke and cheese and cookies while refusing therapy. I had to stay away for a couple of weeks due to a bacterial eye infection, but Koschai visited in my place.
Eventually the government demanded some action, so I went to see her myself on my birthday. When I went into the room, there was a small smear of blood on her pillow and she was acting like she had just woken up. All she would say was ‘okay’ over and over. We called the nurse, who called the doctor. We didn’t want to be in the way, so after the nurse promised to call me, we went home. I stayed up all night but no call came.
The next day, they called me and told me Mom had fallen again and they were sending her to the University Medical Centre. They took a quick x-ray, determining that Mom had some damage to her spine, so they had put her in a cervical collar. The bigger problem was that she had had a stroke, but there were complications. They needed to get a MRI, but Mom had fought getting into the ambulance, out of the ambulance and any time they tried to get her into the machine. A nurse called me because Mom kept screaming for Tommy to help her and she wanted me to get him to the hospital. It was the first time she had seemed to lose time.
I went in to see her, but it was bad. She grabbed Koschai in one hand and me in the other, screaming at us with no words. The noises were all there as if she were speaking, she was obviously furious, but no words. I think she knew it because it ended with a scream of frustration, then she fell asleep. The nurse suggested I not visit for a few days. She didn’t think Mom would realise it and having her that upset wasn’t helping her.
I eventually had to consent to having her fully put under so they could get the MRI. They needed it in order to help, so I approved despite the risks.
A couple of days later, a cancer specialist called me. He was glad I remembered the description of the tumour because it gave him something to compare to.
It isn’t a brain tumour; it’s a calcified melengianoma. A growth on her melanges. It isn’t just wrapped around her optic nerves; it is sitting directly above the area where her brain and spinal cord meet. There isn’t any way to tell for certain, but the headaches and back pains Mom has had all her life may be coming from it.
It isn’t operable even with current medical advances. It doesn’t appear to have grown, but a pocket of fluid has formed around it, adding pressure on her brain. Mom did have a small stroke, but there’s no way to tell if the stroke caused the pocket or vice versa. There is also no way to tell when it formed or why. It may have been forming over years, or the initial surgery could have triggered it. His recommendation was to treat the pocket with steroids and see how Mom is if it deflates. He said there is a real chance she could get back to where she was before the initial surgery.
The doctor also told me that it may have been affecting Mom’s ability to think and make choices even before I was born. Dementia is not an uncommon symptom. Oh, also, if Mom were in better shape, they could try radiation, but they aren’t willing to risk it now. If they did and it worked, she would need the treatment several times a year to keep it under control. I’m not thinking that’s an option.
They moved her back to the care facility to heal and start therapy, but it isn’t working. Shawna and Greenstreet visit her early in the day and report her sitting up and talking calmly to them about how she’s doing and promising she’ll do her therapy as soon as she’s up to it. The nurses kept calling me because Mom was fighting them, falling out of bed and pulling her nose tube out. (She’s having trouble swallowing so they were using it to feed and medicate her. They put in a pick line last week so no more nose tube.)
I can’t visit during the day (can’t drive) and Koschai’s working 45 minutes away, so he doesn’t get home until late, so I usually arrive between 7:30 and 9. When I’ve seen her, she is groggy, usually only using one word at a time. The nurses tell me she’s more active during the day, and she’s usually just gotten her meds, so I’ve been assuming she’s just tired when I’m there.
Meanwhile, the government wants some sign that Mom is participating in her therapy. We’ve been given a window to try to get her to, but if she doesn’t, they will either send her to hospice or back home. The guys can take care of her (Greenstreet has a lot of experience; he moved in right after his grandmother died and he’d nursed her for five years), but none of us think that is best for her. Shawna thought maybe it would help if one of us was there when she’s supposed to do it, so we’ve all been scheduling around it.
I had to take a cab to be there on time Tuesday. It was the first time I’d be able to see her that early, so I hoped she’d be a bit more lively.
They had had to move her to a different room right before I arrived (her yelling was disturbing her roommate). She was curled up in the bed, seemingly asleep. I touched her arm and said hi. She said it back. I asked if she wanted to sleep a bit and she said ‘yes’, so I sat in the chair and waited for the therapist to arrive.
The therapist came in about fifteen minutes later. They had left the harness on her, and the therapist brought the winch. The plan was to get Mom sitting up in a wheelchair, then go from there.
I touched Mom’s arm and started to explain this to her, but she started yelling ‘no!’ over and over. She thrashed away when I touched her. I kept trying, but after a bit, the therapist said maybe Mom was just too tired from the move. She suggested we get Mom out of the harness so she could be more comfortable. After she summoned another nurse, the three of us moved in to do it.
Mom’s eyes opened wide with recognition. She looked squarely at me and yelled with considerable venom “Get the hell away from me!” She kept yelling like that until I stepped away from the bed.
They got the harness off, settled her in and covered her with the blanket. She seemed to fall asleep and didn’t answer me when I left.
Maybe she thought I was Ann. I’ve never seen any resemblance, but Granny, Grumpy, Dad and even Mom frequently called me “Ann”. All I know is that I was not an asset. I texted the guys that I won’t attend any more therapy sessions since I seemed to make it worse.
Shawna refuses to consider it, but maybe she’s thinking if it all stops and the tubes are all taken out, she’ll die. She isn’t dying. If they move her to hospice, she could outlive us all. Every time I got asked for consent, I approved because what they wanted to do was heal her, not just extend her life.
I do know this; I’m exhausted and I’m not the only one. (Just a side note: Greenstreet totalled his car in the interim, then his own mother died, so there are a lot of walking wounded around.) I desperately want an Important Unquestionable Omnipotent Authority Figure to come tell me what to do. Don’t worry; I’m not recruiting. Advice would be gratefully received, but I’m still on the spot. The stress is getting to me. I had a duodenal ulcer when I was 12, so I tried to learn all I could about dealing with the tension. I ground my teeth so badly that I dislocated my jaw, and that was before Mom went into the hospital!
Mom is at ***. If you choose to come down, Koschai and I are living at ***. The place is a mess; my in-laws are coming in mid-September, so I’m trying to get ready. They offered to postpone, but Tammy is Mom’s age, Brad is older, and I’m too aware how fast you can lose somebody. I don’t want Koschai to miss a chance.
Thank you for hearing me out. I haven’t been able to write since this started, so it’s been a familiar feeling. Maybe Matt’s buddies are right and confession will be good for the soul. I will try to keep you all closer in the loop. G’night.
My father’s brother and his wife visited shortly after that. I had lost all hope, but when they walked in with me it was like I almost had her back. She couldn’t really sit up, but we were all talking, repeating family jokes, etc. I had hope again and it was wonderful. Matt visited right before they were ready to move her back to the secondary hospital.
While Brad and Tammy visited, Mom had a cardiac blockage, which was scary, but they were able to fix it via a tube inserted in her thigh and the prognosis was looking up. They were even able to take her right back to the secondary hospital. They had had to intubate her, but the hope was she’d be able to come off it soon.
She got moved from the secondary hospital to a rehab center at the beginning of October. It wasn’t great, but the people were wonderful. I went to see her every other day. They were shutting the respirator off for hours at a time and working to get her swallowing properly. She would probably never get back to her former strength, but we thought she’d get home. I promised her I’d take her home.
They called me the morning of October 29th. (I had set my ringtone as the old Red Alert sound from Star Trek since I had to wake and answer if doctors called in the wee hours.) Mom had developed a bit of pneumonia and they wanted to take her to the hospital out of caution. I approved.
Within the hour they called back. Mom’s heart had stopped as they had loaded her onto the ambulance. And they couldn’t revive her.
I went over to see the body, made the funeral arrangements she had specified years ago. I couldn’t speak at the funeral, but everybody came and was wonderful. I finally actually signed onto Facebook and a lot of the family has been ‘talking’ with me.
My father told me two things about myself that I have come to believe. First, he gave me the complete book and told me I was Sherlock Holmes when I was eight. I had trained myself to be observant of the slightest details because I needed to help him help Mom. Second, he regretfully said he’d instilled in me a ‘MASH mentality’; that I wade into hip-deep mess and chaos and do what’s needed in the moment at any cost and any sacrifice.
And now they’re both gone. I feel like I failed, but I’ve made peace with that over the last month. The prepping to be ready for the next wave is going to be harder. The anxiety attacks are still happening and I’ll build up a head of steam without being aware of it, only to need to find an outlet to bleed it off. I’m trying a method now, using a Big Ben chime on my phone, making lists and reviewing once an hour to ask the right questions and center myself.
I will be okay, promise.”
MizJ, as always, has been incredibly supportive. She had emailed me back in April, but I got it while I was in the waiting room during Mom’s initial surgery and I couldn’t bear to answer her. Yeah, I pulled a ‘Sherlock’ and didn’t get in touch with her until that awful day in October. She is every bit as wonderful and patient with me as John Watson would be to Sherlock and I am beyond grateful for her undeserved friendship.
I desperately want to get back to writing and hope I will be welcomed, but I need to heal a bit first.
This year has been so horrible and scary and painful for so many. I have a fantastic husband, a handful of tried and true friends and an extended family that is drawing closer to help me in any way I’ll allow.
I’m going to ask two things of you, dear reader. First, in memory of my mother, please be as good and kind to each other as you can be. To use the Beatle’s quote I had put on her funeral booklet…”And in the end, the love you take is equal to the love you make.”
Second, in any way that you can, as loud as possible with as many loved ones as you can, send this year out with a bang. Eat, drink (soda allowed), scream, make jokes, cry tears and kick this year into the past.
Hope to be back soon. Pax.