“To enjoy good health, to bring true happiness to one’s family, to bring peace to all, one must first discipline and control one’s own mind. If a man can control his mind he can find the way to Enlightenment, and all wisdom and virtue will naturally come to him.”
– Siddhārtha Gautama Shakyamuni Buddha
The Year 2015
That was hard a year for my family. I got the bill for that ambulance I put my mom in. Medicare did not cover it and it was over $3,000 for a trip that was about five miles across town. They sent it to my mom to pay! She was livid. My husband was also traveling to Asia here and there and my mom started calling me and leaving messages about the poisonous water. I had her water professionally tested and the results showed no dangerous toxins to be present, but she didn’t trust the results.When I suggested that she leave her home and live in assisted living where she could get clean water everyday, she got upset and basically told me I was an idiot.
My mom was 80 years old. She had a friend named Shirley who was one year younger than her. Shirley lived by herself in a beautiful home within a gated golf course community and was a very strong woman for her age. Her mind was very sharp and she had no obvious health issues. My mom really wanted to be like Shirley. She begged me to help her find a condo near where Shirley lived. Mom was really becoming less and less able to care for herself though, so a condo would not ever be a possibility for her. I was worried that she would fall and injure herself in the house she was in. If that happened, she might not be found for days. I also worried about her getting into a car accident and either hurting herself or injuring someone else. She was still driving herself to the store! She would forget her way sometimes, but she always figured out how to get back home somehow. It was a really scary situation.
Where Buddhism Came Into Play
As for myself, my mind was going crazy. I was starting to forget things left and right. I couldn’t remember where I put things or what I had said five minutes ago to someone. When I talked to people, the words coming out of my mouth didn’t make sense about half the time. I think people thought I was nuts. I also had an anxiety attack at least once a day. I started drinking a full glass of wine at night hoping to get some relief of this, but the wine only helped me feel better temporarily and then I would feel tired and sluggish the next day. My family members where feeling the impact of this whole thing as well. Everyone was struggling to cope with the stress. I couldn’t live like this. I needed to find something that would help my keep my head above water. My chiropractor, who is also an eastern medicine doctor, suggested finding a class where I could learn meditation. She swore that meditation practice would really help me with this situation, so I decided to learn the practice from the people who started the practice: The Buddhists! As luck would have it, there was a Zen Buddhist center a few blocks away from where we lived.
I took a chance and decided to sign-up for one of their free classes. I thought to myself, why not learn meditation from an authentic Buddhist monk and simultaneously learn about a religion I knew very little about? It was a little intimidating at first. I walked in that first night to find over a hundred people of all ages and nationalities being welcomed into a room with long tables and stools. The men sat on the right hand side of the room and the women sat on the left hand side. Every seat had a white binder with all the readings for each night. The class was 12 weeks long and met once a week. It turned out to be an amazing experience! We learned to do walking meditation and we practiced several different sitting meditation techniques. The lectures were also very useful. The Shifu (master teacher) taught the lectures using a Power Point and answered every question anybody had. He was a very nice monk and very funny! He really connected well with the students who knew nothing about the religion. It was a life changing experience for me and I learned to perceive my problems in an entirely different way…a much more positive way. I now practice mediation at home when I can. The practice has taught me to relax and control my reaction to things when I get stressed. I’m less tired and my anxiety attacks have almost disappeared. I have also noticed that I’m less nervous all the time in general. To make a long story short, I ended up passing all three levels of Zen Meditation classes and I hope to bring my own kids to the youth classes once Katherine is old enough (They teach classes for kids as young as age six).
One of the biggest rules in Buddhism is to love and respect our elders. Buddhism teaches that old age is a time of great suffering, and since we all age, the young must treat the elderly, particularly their parents, with suitable respect. In Buddhism, one of the main reasons for respecting the elderly is the idea of filial piety. Since parents spend so much time raising their children, children must repay the pains their parents took. With this in mind, I thought about the pain and suffering my mom and dad were experiencing. I sympathized with them and thought about them with great compassion during my meditation practice. I did not think about all the hurtful things my mother had said to me. I only focused on how I could be more compassionate towards them and how I can ease their suffering. I decide to step up my visits with my dad. He loved seeing the grandkids and they loved visiting him (even though it was hard when the residents would follow my little ones around the facility). It was still worth it seeing the smile on my dad’s face and I think my kids felt his joy as well.
The Assisted Living Idea
I did not bring my kids around my mom because she did not seem to find any joy in seeing them anymore. I continued to have the neighbors and relatives check in on her however. After a while, my husband and I called her again to try to convince her to go into assisted living. My husband talked to her for quite a while, but no luck. I decided to call the facility in Sunnyvale to see if there was any chance they would drive to Hollister and try to convince her to go. They said that they could not accommodate her because of her type of Dementia, but they gave me the name and number of a gentleman who had successfully placed a lot of elderly people into assisted living facilities.
The next day I called that same gentleman and he suggested an assisted living place in the northern bay area that specializes in patients with moderate to extreme Dementia. He then drove fifty miles to Hollister free of charge to evaluate my mom and her situation. After a short time with her, she basically kicked him out. He called later that day to to tell me about the place up north. He told me that this place would be the perfect placement for her. I called the facility and they sent a nurse all the way down to Hollister to evaluate my mom. The nurse and I tried to convince my mom to try out the facility just a for short while, but my mom refused to give it a shot. The nurse called me later that day to tell me that mom was too much of a flight risk.
“She’s too high functioning and we are afraid she would figure out a way to leave our facility.” she told me.
I was out of options. Nobody was going to take my mom because she was “too high functioning,” yet she was starving herself and not taking her medications. I decided I needed to pay a visit to the Shifu privately for some advice. I got an appointment and told him about my situation.
“What do I do?” I asked him.
“Sympathize with her because she is really suffering,” he told me. “You have to let her lead her own life, yet keep in mind that this is the disease that’s talking, not her. She is not herself right now.”
“But she could fall or die in that house!” I told him.
He told me to try to get as many people as I could find (neighbors, relatives, and friends) to help me with this situation. He also reminded me to not put the whole world on my shoulders.
“When the timing it right, you’ll be able to do something about it. No situation is permanent. It has to change at some point.”
It Was Time To Say Goodbye
In October I got a call from a hospice care nurse. She said that my dad was not doing so well. I drove to the facility where he was laying in bed looking very thin and pale. I asked him how he was doing and he just mumbled. His good health had diminished almost overnight. The last time I had visited him, he seemed healthy, talkative and alert. The hospice team was giving him drugs to keep him comfortable, but it was not easy as the medications were wearing off every six hours or so. I knew this was the end for him. I could tell he probably only had one more day left in him. I sat with him for a while, but then decided to call my mom’s neighbor. My mom had not visited my dad in over six months. She had also had her phone disconnected because she hadn’t paid the phone bill. I had to text the neighbor to get any type of communication to her. The neighbor put my mom on the phone.
“Dad is not doing so well” I told her. “I’m not sure he’s going to last much longer.
Do you want to visit him?”
At first she said no because she thought it would be too upsetting and she really hated the facility. I don’t remember the details of that conversation, but after some time on the phone with her, I convinced her to come. Once she arrived, she seemed to have forgotten about all the things she hated about me. She was calm and seemed to be very focused on my dad. When she walked into the room, she immediately hugged my dad in bed and asked him how he was doing. He pushed her away and yelled at her like he was very angry at her. She told him how sorry she was for not visiting him for so long. She sat next to him and held his hand.
“What did they do to you?” she kept asking him. “I should have never let Leanne put you in this place. You should be home with me.” she said.
I had brought a piano keyboard into his room a few weeks earlier hoping he would try to play it a little. I was now sitting at that keyboard playing his favorite songs, singing and showing him videos on my phone of some of his favorite symphonic pieces. He loved classical music. He used to practice the piano at home in the evenings. I played some of the songs he used to practice. I could tell he really liked that.
Later that evening the pain he was experiencing became more intense. He wanted me to stop playing and be silent. I told Hospice Care to give him more pain meds. They told me they could only give him one dose every six hours. It was a frustrating. I brought mom home that night. She was very distraught and blaming Hospice Care and the facility for his sudden decline.
“He should be dying at home with me,” she complained.
The next day his condition had worsened and he could not talk to me or my mom at all. Shirley and I took my mom out to get something to eat near the facility that day. During lunch, Shirley tried to convince mom to go into assisted living. She thought it was a good place for her.
“Why don’t YOU go into assisted living?” mom asked her.
“Oh no,” she told her. “I’m way too independent.” I’m going to live on my own until I croak” she laughed.
Thanks a lot Shirley, I thought to myself. She wasn’t helping.
Mom wanted to go home after a while. She just couldn’t stand seeing my father in this condition. My mom kissed my dad goodbye. I think she knew that was the last time she would see him. Shirley took her home. The hospice care social worker had told the nurses to give my dad more pain meds. Finally, some relief for him! I stayed as long as I could, but I was getting really tired from being there all day. It was getting late and the drive home was at least an hour if not more. I gave him a hug and a kiss and told him that I loved him. I knew that would be the last time I saw him. I got a call late that night from the hospice social worker letting me know that he was not going to last very much longer. She asked me if I wanted to drive back over there to be with him, but I declined. I was way too tired to drive and I thought it would be a little unsafe for me. I was also too emotionally worn out from the last two days. An hour later the social worker called me to tell me that he had passed away. The second I hung up the phone, this strange vision came to me. I had suddenly gone back in time about fifteen years ago when I was sitting next to my dad on the sofa in our home in Hollister. I would sometimes stare at him and think to myself that he would be around forever. Nothing bad would ever happen to him because he was so healthy and happy…and he was MY dad. This flashback was so vivid! I began to cry pretty hard. My husband hugged me.
“He had a good long life and it was his time,” he told me. My dad lived to ninety-two years old.
I planned a really nice memorial a month later. Dad was an aircraft builder and pilot so we had a celebration of his life at the Hollister airport. A friend of his donated his hanger for the event and the local airman’s club helped with the planning. My dad was a World War II Veteran, so we even had a gun salute and a fly over. All of this was donated. My mom was not in attendance that day. She refused to get into the car when my cousin tried to pick her up. She was too upset and she did not want to spend money on a memorial for him. She still thought she was running out of money. Despite her objection, I planned the memorial for him and paid for the food catering for it out of the family trust. It was not what she wanted but I knew his family and friends wanted this for him.
Several months went by and I didn’t hear a word from my mother for a while. A neighbor helped get her phone service back. Right after the phone service was restored, my mom suddenly began calling me and leaving nasty messages. She told me that it was my fault my father had died, she was starving to death in her home, there was somebody watching her from outside of the house, she couldn’t drink her own water and I needed to get her out of there. I called her back and told her that I had no solution for her problems except to move her into assisted living. That was not good enough for her however. She then called her friend Shirley for help. Shirley called me wondering what to do about my mom’s phone messages. She did not want to call my mom back because mom would just argue with her. My cousin and I decided to force my mom to go see another doctor. It took a while, but we got my mom into the backseat of my cousin’s car. After the visit, the new doctor called me to give me some advice. He told me that the only way to get my mom into a nursing facility or an assisted living facility, is through an emergency room door. The only way that is going to happen is if she puts herself or someone else in danger.
“Get your neighbors more involved in watching her. If she does anything that puts herself in danger, ask one of them to drive her to the Valley Medical Center in Santa Clara. They have an entire psychiatric unit there,” he told me. He spent an hour on the phone discussing solutions with me. He was a ray of hope!
I called my mom’s neighbors to tell them the plan. One of the neighbors who had been checking up on her once a week told me that he had seen her walking unsteadily on the single lane road in front of her house. He was nervous someone was going to hit her in their car. Another neighbor spoke up and told me that he had seen her reversing very quickly out of her driveway onto the road in the pickup truck. He told me that she never looked behind her to see where she was going when she did this. BINGO!
That was all we needed! A lady who lived next door asked my mom to go with her to lunch at a really nice Italian restaurant in the bay area (50 miles away). After an hour of arguing about whether she should go or not, my mom finally agreed. The neighbor took her to lunch and then called me with an update while I was at work. She told me that they were finished with lunch and now she was going to take mom to the Valley Medical Center Emergency Room. My neighbor was a nervous wreck by this point because my mom had figured out that something was fishy and was getting very irritable in the car. I was about to teach my last class when this call came in. Ugh! The neighbor hung up but then texted me a few minutes later (while I was teaching class). She told me that she changed her mind and thought it would be best to take my mom home and and try another day. She was beginning to feel guilty about that plan and my mom was becoming a little combative in the car. Her husband and I texted her back begging her to stick with the plan.
“Even though it’s hard right now, it could potentially save her life and the sanity of my family in the long run,” I told her. She finally reached Valley Medical Center and pulled into the Emergency Room parking lot. My mom refused to get out of the car. The registrar at the window told her that my mom would have to come in at her own will in order to be seen. Nobody could force her. My class ended and I drove to Valley Medical Center (during rush hour traffic)..
Now here’s the part that made this whole situation especially difficult: My husband was in Taiwan on a business trip and I was the only person who could pick up my children from daycare that day. It was already 4:30 p.m. and I had to pick them up by 6 p.m.. When I reached the hospital, my mom’s neighbor was sitting outside next to the entrance and mom was still in the car refusing to move. I went over to talk to her. She was pretty mad and as I expected she did not think she needed to be there. I can’t remember how this happened, but we managed to get my mom out of the car and into the emergency room after about 30 minutes.
It was a huge urban hospital, so there were many people waiting in line. We had to check in to two different people sitting at windows. I explained to them that the neighbors had seen her walking on the street very unsteadily and she was starving herself to death. I also told them that the neighbor brought her there. I gave her neighbor a huge THANK YOU! and sent her home. My mom still wanted to leave, so I got my sister-in-law on the phone. She works at an assisted living facility as an occupational therapist and is really good at talking to Dementia patients. She was able to calm my mom down quite a bit. She convinced her to get checked out there. Time was running out for me though. I now had 20 minutes before I had to pick up my children from preschool two cities over. I explained to the registrar that I had to go pick up my kids from preschool and I was the only person who could do this. She completely understood and told me to go ahead and leave since she had all my information, including my Power of Attorney letter. (Without that letter, getting my mom checked out at any emergency room would have been impossible). She then put my mom at the top of the list to get checked in. I told mom that I would be back and that I would not be abandoning her there. I also told a couple of police officers who were providing security in the lobby…it was an interesting hospital!
I ran to my car and drove as fast as I could to the preschool. I got there just a few minutes late. Whew! I could not go back to the hospital with my two little ones to see my mom though. That would be too traumatic for them. So I called to check in on her. The nurse had already checked her in and they were starting to run some tests. She told me the doctor would call me back in a few minutes. I decided to call the gentleman who places seniors in assisted living facilities. He would know what to do next.
“We did it!” I told him. He had already known about our plan a few days prior to this.
The Buzz Words
“O.k., this is important,” he told me. “They will probably try to send her home. When the doctor calls you, tell him that they absolutely cannot send her home because it would be an unsafe discharge. You have to use those exact words. Tell him that she is walking on the road where she could get hit by a car and also starving herself to death. She cannot take care of herself. She’s a danger to herself and others due to her altered mental state, therefore sending her home would be an unsafe discharge.”
When the doctor called he seemed to understand what was going on. I used those words and he agreed with me (with no hesitation). It worked!
“Would you like me to put her on a 72 hour hold?” he asked me.
“Yes!” I told him.
“I can definitely do this, however, I don’t think a nursing facility is going to take her because she has no medical reason to be admitted into one of these places. The tests that we ran on her all looked pretty normal. Blood pressure is a bit high, but other than that, no major problems. I’m not sure what we can do with her after the 72 hour hold expires. Medicare won’t cover the hospital stay past that. We’ll go ahead and get her a room for now. We have a psychiatric doctor on the floor who will also evaluate her tomorrow. She will probably need a 24 hours sitter and a sedative. She’s already combative and is trying to get up and leave.”
The gentleman who places seniors in assisted living homes made another phone call to the facility up north. He thought that this facility was the perfect place for her, so he decided to give it another shot. The psychiatric doctor in the hospital put my mom on Risperidone (.25 MG) and agreed with the diagnosis of psychosis and dementia. The social worker came to the room to talk to my mom. After interviewing mom for a while. she left me a message stating that she wanted to send my mom home because she thought, based on the conversation she had with her, mom was quite capable of taking care of herself. I called her back and gave her the same spiel: It would be an unsafe discharge for the following reasons: She’s walking on the road, etc… Mom was mad as hell at that point, pacing in and out of her room and threatening to leave. She had called me from her hospital room about fifty times the night before begging me to get her out because she didn’t belong in there. I had to turn my phone off after the fifth call. She was very combative and argued with the nursing staff. I felt so sorry for the poor nurse/sitters who had to keep redirecting her back into the room minute after minute. Man oh man! I went to see her the next morning. The guy who does the senior placements met me there with a nurse evaluator from a facility closer to our house. He evaluated her and told me that they could not take my mom. She’s too high functioning and they were not equipped to handle her type of dementia. We were running out of options. I was able to gather all the doctors and social workers who had been working with my mom, as well as the gentleman who did the placements. We all stood together in a semi-circle team. Everyone in the circle was interested in being part of brainstorming ideas on what would be best for my mom. The psychiatric doctor and the emergency room physician both agreed she could not take care of herself, she should not be sent back home and that she needed to be in assisted living. I asked both doctors if they would give me a letter stating that she is incapacitated and can no longer take care of herself or her finances. They both agreed to do so. Since the nursing homes would not take her as a patient, we considered a private “SNiF” (Skilled Nursing Facility). They are expensive though and they don’t necessarily have the security. Most of them are not a locked facility. There were some locked facilities around, but they were pretty full and very expensive.
Miracles Do Happen
Nothing seemed to be available for my mom’s cognitive needs, then BINGO again! The facility up north decided to send a nurse down to evaluate my mom one more time. The nurse pretended to be a nurse from the hospital so that my mom would not know she was from the facility up north. By this time we had already passed the 72 hour hold expiration and it was day four at the hospital. She had also been on Risperidal for two days now and it was starting to kick in. She was calming down and able to speak to people a little more rationally. The nurse from the facility up north was able to get a clear picture of what my mom needed and was convinced that she was not much of a flight risk if she’s on psychotropic mediations. The facility happened to have one room available, so they took her. It was a miracle!!!
I drove to the facility right away, filled out all the paperwork and wrote a check out of the family trust for her deposit. I was assigned as a trustee by my parents several years before all of this hit us, so this part was easy. They were able to get her doctor in Hollister to fill out the medical history report that they needed and the hospital doctor ordered a TB test. My mom gets false negatives with TB tests, so they ordered an X-RAY for her. I can’t believe how fast they made this happen!
The facility up north took her the next morning. The hospital doctor ordered a medical transport to drive her there. That afternoon, they put her on a gurney and drove her to the facility up north. I followed behind them in my car. The lady at the facility gave her the warmest welcome and the EMT wheeled her to her room. Mom was unusually calm. The facility assigned her a 72 hour caretaker (they do this for every resident who enters the facility for the first time). My mom was of course very annoyed with the caretaker and wanted to leave the facility. Fortunately, the employees at this facility are highly trained and had wonderful methods for redirecting residents back into the facility away from the front door. All the gates and doors at the facility have cameras and alarms on them, although it was technically not a “locked” facility.
It Took A Village, But We Did It!
It was finally over. We had done it. I say “We” because it took a village to make that happen. We finally had some peace of mind and I could go back to being more of a mom to my kids. While I felt really guilty about putting my mom in a place she didn’t want to be in, she was at least safe from harm and in really good hands. A private Geriatric /Psychiatric doctor who specializes in Dementia patients visited the facility quite frequently to take care of several patients there. My mom was seen by this doctor and she increased the Risperidal a bit and also put her on Lorazepam (for anxiety) and a very low dosage of a medicine called Divalproex, which is used to treat people with epilepsy. She also put her on Sertraline (Zoloft). This really helped my mom a lot. She started eating three regular meals a day (although she continues to complain about the food to this day). She also stopped pacing and talking about her water being poisoned. She seemed to forget about her problems in her house altogether.
That summer, I had no time to relax because I cleaned out the entire half-acre property almost all by myself. It was challenging to clean out a property that I lived fifty miles from. I don’t have any brothers or sisters, so it was basically me and a three bedroom house on a half-acre of land, driving to and from my home to my parents’ property everyday for about three weeks. I enlisted the help of a couple of neighbors, a cousin and a family friend. It was so hard cleaning out all my parents’ things, especially knowing that my mom was still alive and wanted to be back in her home. I had to get rid of practically everything because the assisted living facility did not have space for most of her belongings. I had to hire a clean-out company to come take a lot of stuff to the landfill and recycling. It took a huge dump truck and several trips to the landfill. A few friends of mine and a cousin helped me organize and run a one day Estate Sale. I still didn’t have enough help with all the things we were trying to sell, but it worked out and I was really blessed to have had volunteers that day.
The house took six months to sell, but it finally closed sale a few days before Christmas. A retired couple bought it and I found out later that they also have a daughter named Leanne. Wow!
My mom has now been in the same facility for over a year. She’s had a couple more strokes, which have affected her cognitive ability. She ended up in the emergency room at the local hospital a couple of times due to mini-strokes called TIAs (transient ischemic attacks). She’s also less alert than she was a few months ago and she forgets things quite a bit now. It’s still been a little up and down, but nothing like it was back in 2015. The facility doctor put her on Hospice Care to keep her from going to the emergency room every time she has a TIA. This will help her be more comfortable. Mom now has her own personal assistant who also visits her twice a week. This, along with the medications, has really helped her become more comfortable at the facility. The children and I visit her one to two times a month and she loves seeing us. Our hope is that mom will be able to come visit us at our new house someday (with her personal assistant). Life with my mom has finally found a settling point and I am so happy to just sit and breathe again 🙂
I feel a little guilty about making so many details about my mother’s health and behavior public. However, I think the details are necessary for the people who are dealing with their own parents’ health problems. I’m hoping the information in this story will help families who are dealing with similar situations make more confident decisions about how to deal with their loved ones.
Stayed tuned for more blogs (shorter ones) related to this topic.