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.