I think this is what one calls a shit storm.

• Trying to contact an attorney to correct the deed to mom/sis's house
• mom is vomiting blood.  Apparently her dieulafoy lesion is back. We are not treating it this time.
• Sister has a brain tumor
• a big project at work has a go-live of tomorrow, which I may need to call off from

Dementia

Dementia

I suppose this story starts 12 years ago.  I can fill in those gaps as the story tells itself.  I’m jumping forward to last month.

My sister, Lynn, calls me.  She tells me mom isn’t feeling well.  She knows mom isn’t well because she is being nice.  Mom gets nicer when she’s sick.  It’s a Saturday.  Of course I take care of mom, but I lament the loss of one of my few days off.  I gotta figure out how I can get the house ready, shopping done, laundry finished, etc, before my dad’s month long visit, starting in 2 days.

I come next door, where my mom and sister live.  Mom’s been vomiting.  I ask to see her barf bowl and see that it has the classic coffee grounds appearance.  This means blood.  This means a trip to the emergency department at the local hospital.  This is a repeat of several other trips we’ve made to the emergency department for the same reason.  I know the hospital will keep mom overnight.  They will do an upper gastrointestinal exam of her with an endoscope (EGD) and they may or may not find the cause of her bleeding.  She will come home and we will have to watch her more closely, again.  This is a story told countless times in our lives.  Mom’s last ED trip was for a UTI.  There was another trip for feeling dizzy.  The trip for a fall where she hit her head was more eventful, and included getting a CT scan.

This time was different, only we didn’t know that then.  This was the last time mom was “normal”.  Yes, the ED doctor remembered us.  He is very sweet, caring.  Dr Edwards let us know that when he gets to know his ED patients, it’s generally not a good thing.  Dr Edwards calls the GI doctor on call.  Again, he knows mom from an earlier ED visit.  Dr Naryan schedules the EGD for the next morning, unless something emergent happens.  Mom’s hemoglobin is stable, so he thinks we can wait until morning.  I stay with her for hours, returning home to my own house and my own bed when she’s been admitted and the hospitalist has her questions answered.  Again, this physician is familiar with my mom, also having cared for her recently.  I return home and its dark.  My partner has already eaten.  I haven’t had lunch, nor dinner, so I scrounge for something to eat. 

I didn’t visit mom on Sunday as I have my own life to manage.  The hospital and mom both have my number and they will call if something comes up.  I get myself ready for my 86 yr old father to visit. He lives in Spain, so I don’t get to see him often and I’m wondering how he’s aging.

Monday comes. I get to work from the hospital at which mom is located, so I can see her several times during the day.  She has oxygen on when I see her, but she’s lucid and she knows that he had the procedure the previous day (a dieulafoy lesion was found and ligated) and had lost 4 units of blood.  She was being transfused with two units.  I spoke with the doctor who let me know he thought she could go home the next day.  The next day came and went.  Mom was in some delirium and didn’t know where she was or what had happened to her.  She didn’t recognize me.  She was incoherent with her words, but she was still vocalizing.  The doctors said she may be “sunsetting”, which she had done during previous hospitalizations, as much as 8 years earlier.  I had hoped that daily visits, often several times during the day, would help, but this time it did not help.  I actually felt as if they made things worse, but that’s my opinion based on my own reactions on seeing mom deteriorate in front of my eyes.  Wednesday in the am she was still away in her land of hallucination and paranoia, but when I visited again in the afternoon, she woke up.  I recall her crying and saying, “is that the REAL Susan?”.  I let her know it was really me.  She cried and let me know she had been seeing/feeling/hearing strange things.  She thought she had been kidnapped and was being tortured and poisoned.  She was relieved to know it was me and that I was there.  I let her know where she was and why she was there.  I also let the doctors and nurses know mom was lucid again.  They came in all at once to see that mom was oriented appropriately to person, place, and time.  The darkness of dementia had lifted and things seemed back to normal. 

Thursday was her discharge day.  I brought her home in the early afternoon.  Lynn had set up a bed downstairs, as 5 ½ days in bed did not make mom any stronger.  As mom had been needing more help with daily tasks, such as preparing lunch, remembering her medications, having enough to drink, and toileting without falling, Lynn had arranged a caregiver to be available 4 hours a day, most days.  Lynn let Joy know mom was coming home and arranged for her to be around from 9 to 1, to help mom get up, dressed, fed, and toileted before mom took an afternoon nap. 

Mom was confused a bit.  She wasn’t always aware that she was in a bed in the family room, rather than in her own bedroom.  She was confused by reflections on the windows in the evening/night hours.  We had attributed this to mom having received anesthesia, and were told that it should clear up in a few weeks.  We were doing our best.  I’d check on mom before I went to work, ensuring she woke up in the am, and took her medications.  I also made sure she didn’t need to get up to toilet (often she did, and a few times she fell).  Lynn took the evening/night hours.  I didn’t realize it at the time, but mom was showing these dementia symptoms for years, and was highly dependent upon Lynn.

The Monday after mom came home was a holiday, president’s day, and I took that opportunity to visit my son at UCSC, taking my dad on a car trip to Santa Cruz so that he could see one of his grandkids.  It was a great visit.  On the way home I received a call from Lynn.  She wanted me to hurry home; that mom was out of it, and she wanted help.  I’d given up so much of the previous week to mom and dad already, so I let Lynn know I’d come help after I got home and after I had a workout at the gym.  I was hope in early evening and went to see mom and Lynn.  Mom was definitely disoriented.  We knew, at that point, that caring for mom was going to need the next level of care; 24 hour care at home.  We had hoped that this would be needed just for a few weeks, until the effects of anesthesia wore off.  I had thought that this may be dementia and had reached out to a colleague of mine, a neuropsychologist, for an opinion on what to do.  She agreed that anesthesia could very much be at play, and if mom continued to act differently by early March, to give her a call again.

Lynn decided to stay up with mom that night.  Lynn let me know mom was up a lot at night, looking for a wooden hanger in her bed.  Lynn finally found a hanger in a hall closet and presented it to mom as the hanger she was looking for.  Mom also spent hours fiddling with her emergency call button she had been wearing around her neck.  Mom thought it was something untoward, but couldn’t verbalize what.  That night I called around for help.  211 wasn’t helpful at that hour of the evening.  Charlotte at A Place for Mom was calm and soothing.  She provided me several names of agencies that could help with 24 hour home care.  I called them during the next day (Charlotte was unable to find someone on an emergency basis that night) and had found care for mom starting the next day, Wednesday. 

We never used them, despite both companies with which I spoke were kind and helpful and available to provide home care with licensed and bonded employees.  Joy agreed to spend the next night with mom, staying for over 24 hours with mom.  We thought that this would go okay, as Joy was known to mom.  Mom’s brain had another idea.  During the day, Joy had washed up, putting a scarf on her hair. This disoriented mom to the point that Joy wasn’t recognized by mom.  Mom had been sitting on the back sun porch and ended up yelling for help, “Call 9-1-1, I need help” over and over again.  She also went to the railing, one flight up from the ground level, and Joy was afraid that mom would go over the railing, trying to get to Gwen or Fred, the neighbors to the side and back of her house.  Joy tried to get mom away from the railing, fearing that mom would crawl over the rail and fall.  The neighbors heard my mom’s call for help and called emergency services.  From reports, the EMTs who responded were very kind, very professional with mom.  Over the years they had the chance to get to know her, with her multiple calls via her emergency call button, and I think this helped in providing mom very compassionate care.  Unfortunately, mom was out of it and she fought vigorously.  Mom ended up in 4 point restraints, with a tear of the skin on her left hand.  She also lost her talking watch, which was a huge loss to her.  With mom’s macular degeneration, she counted on this watch to tell her the date/time.  Mom also received Haldol, twice, to get her from fighting back.

In the ED, again Dr Edwards was present, as were a team of nursing, ED techs, and anyone who could help to rule out a medical reason for mom’s rapid deterioration in her mental status.  Mom was “gone” for over a week.  She was in a deep, dark, hellish place.  She didn’t recognize family from healthcare providers, from enemies.  We were all enemies to her.  She thought her food and drink were poisoned, so she refused them. She pulled out numerous IVs so the team put in a central line, which the nurses protected with netting over the site.  Mom bit, scratched, hit, and spit on her care givers.  She was mean and nasty to me when I visited.  I cried so many tears as I was not prepared for such a dramatic change in mom, nor for the very ugly but very personal things she said, directed at me, to hurt me. 

Staff assured me that it wasn’t her talking, it was the disease.  My brain could register this information, but I could not make sense of it in my heart and soul.  During this second hospitalization, I lost my mom.  She is gone from me forever.  She got a neurology consult.  The answer was dementia with psychosis and hallucinations.  No one knows the type (Lewy Body or Alzheimer’s disease), but it didn’t matter.  The woman who was my mom was wholly gone.  Different medicines were trialed.  Respidone and Seroquel. Klonapen and Melatonin.  Some days mom was able to be managed without restraints, but often when I visited she was in a vest, tied to her bed, or her hands were tied to the bedframe.  During this time, mom refused any bed coverings.  In a brief period of lucidity, she said it was so she could kick, to protect herself.  Here’s my mom, a women who spent most of her days under an electric blanket because she could never get warm, without a stitch on her except for a hospital gown.  This was definitely not the woman I knew. 

She asked for coffee, one of the things she liked to drink in the morning.  I brought her some one day, only to have her throw it all over me when she got it.  Surprisingly, one day she asked to see Dad, so she could “bury the hatchet” and not have any regrets.  It took several visits, but finally she was alert and awake enough to let this visit happen.  Dad sat with her, peacefully, and they held hands.  Previously, I had brought in a book of pictures of the family in the early years of their marriage, and I showed it to mom again. She went over every page with me, asking me to tell the story behind the pictures.  Some pages she wanted to go over again, as if she were imprinting the images back into her memory.  We left that afternoon peaceful.

During this stay, we also requested a palliative care consult.  The provider who did this had asked for her psychotropic medications to be reduced, so that she might be able to participate more in any discussions.  She was not able to participate, and she had a day or so when she was back in the hell whole of hallucinations.  What did come out of this discussion, which he also held with me over the phone, was that mom was rapidly declining.  She was no longer safe at home.  She needed more care than we could provide for her.  He agreed to sign her POLST which was to provide comfort care only.  Mom was already a DNaR.  Although these decisions were in alignment with mom’s known wishes for end of life care, it felt horrible to have to sign these papers.  Mom became verbal again, with the psychotropics on board, just as she was being transferred to a skilled nursing facility.  Oh boy did she let me know she was unhappy with the decision to have her go to a facility. At the same time Lynn was so happy that she no longer had to provide care for mom on a 24/7 basis.

On the day of the move to McClure, mom was so very angry with me.  She said she didn’t trust me any longer.  She remembered that Dad had visited her, but she didn’t recall that she, herself, had asked for the visit.  I was with her when the EMTs came to pick her up from the acute care hospital.  She didn’t trust the blood pressure machine, so I let them use it on me first.  My own BP was 160/100 that day, due to the anger, frustration, and hurt I was receiving from mom that day.  Dealing with dementia is definitely stressful on the family affected by this disease. 

Mom got settled into her room at McClure, but she refused to speak with me.  She had visitors during the day, though.  My brother, Steve and his wife, Nardeli, drove up from Long Beach area to visit her that day.  My nephews Michael and Chris, with their wife/girlfriend Becca and Vanessa, and the two kids, Chase and Jack were up to visit with my dad.  We made this an occasion to also visit with mom.  I had been told that she wouldn’t live long.  The doctors with whom I spoke thought 2 weeks to months.

It’s now been a month at McClure.  Mom is not normal in any way, shape, or form.  She’s still agitated, but she can now get medications as she needs them, for the symptoms she is having.  Her hospice nurse has seen her when she’s hallucinating, seeing people and hearing noises in a quiet room.  Mom’s called out “fire” thinking there was a fire in her room, where there was none.  She’s hidden her things in a bag under her bed.  Some days she eats, some days she does not.  I do still love her, but I hate to see her like this.  It is no quality of life.  My mom left me last month, but I still visit her body as often as I can.  It hurts on a daily basis.

I envy people whose parents die suddenly in the night, with no warning, after living a healthy and productive life.  Death is the ultimate end to every person's life.  Having a short and sweet death is to be envied.  Dementia is torture for all involved.

Pain

i have often thought mental/emotional pain was harder to endure than physical pain. I am now rethinking this belief.
My reasoning was that physical pain is obvious, that it's easily treated, and given that the bearer of this pain would have visable wounds, that sympathy would be easier to come by.
I also had only endured minor physical pain, previously.
Sure, childbirth is painful, but it only lasts 12 hrs or so. Migraines- only a day or two. Broken bones; really only bad for a week.
Sciatica has me begging for mercy.
Maybe if I knew there were an end in sight, I'd do better. Maybe if the pain stabilized and not get worse with each passing week, I'd do better.
As it is, I see no end in sight and it's kicking my butt.
Relafen and flexeril are not miracle drugs. I think I was given placebos. At least I can sleep, which I wasn't doing much of before I saw my doctor. I just want relief from this incessant pain. 

Tuesday, continued.

I had trouble with that last post and at 4:15 am, I couldn't figure out the issue.
Mom's still in the hospital.  This is a continuation of those writings.
I speak with the nurse, who had just taken over. It's not a normal shift change, so I figure its a short staffed situation. Meagan doesn't know much. Moms been sleeping. She thinks mom had breakfast. I let her know about needing to not move things and let her know I'll call later. About an hour later, Lynn calls. Moms demanding a Safeway roast beef sandwich. Lynn refuses. I get a call and email about this.  I call the nurse again. I let her know mom is asking for food. She lets me know lunch was pot roast and potatoes and that mom has a sandwich ordered for dinner.
Today is when dad arrives. I take off to the airport. I use the time to call mom. For a woman who hasn't eaten in days, she sure can bitch about how bad the food is. Mom swears she heard my voice this am. She knows I was at the hospital, but wouldn't see her. I let her know I was home all day and that I was not there; that I called the nurse and spoke with her, but that I was not there.
She's met with a nutritionist (I know you and Lynn did this to me). She worked with a PT, who didn't like how she walked. Mom talks about not walking much even when she was "good, so she thinks she'll never be allowed home. She tells me she can't talk more. She's crying when she hangs up.
I call the nurse again. She confirms that mom may be discharged tomorrow. She assures me that the case worker will talk to us first.
I can't sleep, worried about mom. Hopefully writing this will help clear my brain and let me sleep.
I worry about paying for care. Mom only has social security. She may have a small nest egg saved up, but not much. Carol and Paul are opening his business. I'm sure they don't have money to spare. I have Jon in college, Ben applying, Morgan without full time work. I can cover my expenses, but not all of Mom's. Lynn, not sure what she can do.  She's cared for mom for 10 years. We'll need to figure this out. Soon.
I keep missing Dr Ross. He's called several times as have I. I feel bad for that, but I've not been free. 

The week of living dangerously

It's 3am. I should be sleeping, but the events of tomorrow are weighing on me. Since Sunday, the week has been worse.
Sunday night to Monday mom has fallen again. Her legs are shaky now. At 2am Lynn hears her yelling for help. She gets back in bed with Lynn's help. Lynn is exhausted and beyond her wits end. We've had a few family calls about how to proceed. We must do something. I'm going to talk with her doctor on Monday and seek out options. I also have emailed the city's elder services programs.

Monday morning 12/16: I have a work call at 8:30, mom knows this. I go to set up a new video/audio monitor just before 10 with Jon, as he's arrived home for the holiday break. Mom's worried about privacy, as the commode is now right by her bed, but I assure her she has some privacy.  White lie. After that's set up, I help her to use the commode, but she can't get up, even with me helping. I ask Morgan to get a bedpan from the medical supply store and he does. Mom has food and drink available. She looks much worse. She says she can wait a bit to pee, so she agrees I can go home and work some, but I'll come over as soon as I have the bedpan. I'm with her for about half an hour. I let her know I've called her doctor. She's clear she doesn't want to go to the hospital.
Shortly before 11, she calls to me, "call 911". The new monitor allows me to talk back to her. I ask her what's wrong. She feels like she's dying. I verify she does want to go to the hospital. She yells at me, "just call 911", which I'm doing while I'm talking to her. I head over to her house with Jon, so he can take Brodie to my house. I sit with mom. She starts talking about a quiet death at home, but she doesn't finish her thought. She's so weak, it's hard to talk. She talks about being too weak to make it to Dr Ross"s office. I just sit with her.
The team arrives quickly. Med lists and her history is relayed. She's taken with all her bedding away to Alta Bates.  I wonder if she will ever come home.
Knowing she'll ask for them, I get her teeth stuff, her neck pillow, her glasses. I pack up my work stuff, as I know it will be another long day in the ED. I send an email to co-workers, and then I steel myself to call Lynn.
We are both relieved she's out of the house. Some family members feel Mom's demands to be cared for at home are abusive of me and Lynn. We just know it's beyond what we can do and have any semblance of a life or freedom away from her. It's moms worst nightmare.
When I arrive in the Ed less than an hour after she left, I find her crying. She doesn't want to be a burden. I let her know we will figure it out. That we want her to get better, so she's safe at home, but she's not safe by any means.
The ED is busy. Seven ambulances are queued up outside. The waiting room is packed. I am allowed to see mom.  It's a small room. I sit by the sink, out of the way. The doctor sees her before too long. Nurses try for IVs and fail. They can't draw her blood, either. Finally an IV is started. A liter of fluid is given. Mom's cold. The room heat is on. It's a long wait. The doctor does an arterial stick for blood. Her potassium is critically low. That's probably why her legs were shaky. I sit and wait, trying to work some, to keep a semblance of normalcy and to keep my mind off what's to come.
Around 8, I see the hospitalist. Mom will be admitted. She's considered failure to thrive.  I leave when Lynn arrives. She's exhausted. I can see it in her face. I ask her to walk out with me to let her know I've told the doctor we can't care for her at home anymore. I finally get to have a meal at home with my family.
Tuesday:  I work from home again. I want to be able to leave if I have to. I want to help Lynn with Brodie. I don't want to cry at work. I call around noon, knowing that it'll take a while for am labs and ds to round. 

What a difference two weeks makes

November 27th?, I take my mom to the doctor as she's been sick with vomiting and diarrhea.  She's weak and she vomited coffee grounds material.  I'm told to take her to the ED and she will most likely be admitted, for fluids, at least.
She's kept overnight and given IV fluids. In the AM she gets an upper GI test to find the source of the bleeding.  It's an old ulcer that apparently got irritated from the vomiting.  She's released and comes home.

Week after Thanksgiving she drives Lynn to Carol's house.  There they all get gastroenteritis, hitting them all hard.  Lynn faints x 2. Dislocates her thumb.  Mom is disoriented and doesn't know where she  is. Because they are all so compromised, 911 is called. She's taken to Loma Linda in Murietta.  She stays 4 days. IV's, antibiotics, stool culture is normal.  It's called gastroenteritis.  Monday of this week, 12/9 she's discharged and Lynn drives home.  Mom's able to make it to rest stop rest rooms on her own power.  They need to stop often for her persistant diarrhea.

12/12:Thursday is her follow up visit with her doctor.  She's still weak.  No clue what's causing her illness and her decline.  It's a watch and see, with us to get to Dr her current meds, as they have recently changed.

that night, 911, mom's scared. She is in A-Fib.  She's taken to the ED.  EKG is abnormal, but not bad enough to keep her.  XRay shows some fluid on her lungs, but not bad enough to keep her.  Heart is enlarged.  She comes home around 11pm and she's able to walk from car to wheelchair on the sidewalk (about 5 ft).  She's feeling better, so she says she's fine and will sleep all night.

Friday: She's found by Lynn on the ground, cold and wet.  She got up during the night and used the old TV table to help support her as she was getting "something".  The table collapsed and she fell.  She couldn't get up.  Lynn got her back to bed (in the family room) shivering. She has an electric blanket to help keep her warm.
Later that morning, since I'm working from home, Morgan helps me set up FaceTime, so I can watch her remotely.  She's on the ground again.  I get her to bed.  I let her know I'd rather help her than have to get her up off the ground, especially since she's sore and less functioning after she falls.

Saturday: She seems better, somewhat.  She's made it to the commode 4 times, per her report.  She falls that afternoon, getting back to bed. I see it on FaceTime, so I help her.  I let her know it's important to FEEL the bed behind her before she drops down.  She's not controlling her descents, and just flops down.   I help her bathe with a tub bath.  She seems to be mentally with it and is adamant that she doesn't want to go to a nursing home.  She's able to remember phone number, addresses, and seems cogent

Sunday 12/15: She's thinking she went to the Albany pool.  She wanted to work out some to get stronger and get out of bed.  She has a whole story that she went to the pool but needed to call a cab to get home.  She wanted to fix the car, too, as it was jerky, but didn't know the make or model.  She relates to going to her eye doctor, but they were closed, to another dr's office (I don't recognize the name) and to the "good doctor", Dr Ross.  She's able to rattle off the doctor's names and addresses and phone numbers.  I know these are from memory as she can't see well enough to look them up recently.  Lynn and I let her know that it's not possible she was out of the house, but she is angry, "I'M NOT SENILE".  We let her know we don't think that, but we also know she didn't leave the house.  We suggest it was a vivid dream or a seizure.
I start looking up info on elder abuse and adult day care options.  Is it abuse to follow her directions and keep her at home, not to worry about her. If she falls, she falls and so be it.  She doesn't want to be a burden, but Lynn is crying almost daily from the struggles of managing her care.  

How long has it been?

Almost a year since I last posted? Can that be true?  Where did the time go?
It went into lots of overtime, getting this enormous project completed. 
It went to miles driven.
To take out food for dinner.
 It went to general survival and time with the friends I needed to see.
 It went to working inside my old facility when my former colleagues were on strike.  How horrible that was. 7 strait days of 12 hour shifts.
It went to supporting Morgan, who has been out of  work for 6 months.  He has an interview on Tuesday, so I'm wishing him well with that.
It went to quick reads about sewing, rather than doing the projects.  That needs to change.  I need to work on some of my own projects.
It went to a year of never getting sick!  That's a first.  Maybe my lungs can heal.
It's going to see my dad this summer.
It went to helping Lynn with Bear's death.  Sometimes you just gotta miss work, ya know, even if the work is piling up around you.