Lessons learned: A daughter’s story on dementia care

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Lessons learned: A daughter’s story on dementia care

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My name is Cherina Tinio. I am here to share the lessons learned, a daughter’s story on dementia care. I was born and raised in Manila, Philippines. I am a retired registered nurse. I migrated to the United States in 1983 together with my 3 older siblings. I received my Baccalaureate degree in nursing from Manila Doctors College of Nursing in Manila, Philippines in 1980 and completed my Master of Science of Nursing degree from San Francisco State University in 2002.

Back then, I did not know what dementia meant while in the Philippines. When old people reach the stage of being forgetful and unkempt, it is often thought that those behaviors are just “part of aging, senility, and etc.” Most of the time, people in the Philippines will always say the word “Ulyanin na” or “Malilimutin na”, which means forgetfulness. In the Philippines, it was like a taboo if their loved one had dementia because they are embarrassed to find out if one of their family members had dementia.

It was in 1983, when I started my first nursing job in one of the nursing homes in San Francisco, California as a nursing assistant. Back then, I did not realize that we had some patients who had Dementia diagnoses, and that I was even taking care of them. My areas in the nursing field have always been with old people or the geriatric population. I have been taking care of the geriatric population for more than 30 years.

In 2002, I enrolled in the master’s program in California. I was lucky enough that after graduation from the master’s program, I was able to work in a dementia unit and Psych unit in one of the skilled nursing facilities. That is when I really acquired so much knowledge and skills with regards to the behaviors of patients with associated diagnoses of dementia. I have learned that there are different types of dementia, and it became my focus for what you would call an expert in the nursing field. I read and bought numerous books pertaining to dementia on appropriate approaches to patients with dementia, how to communicate, how to prevent escalating behavior, prevention of wandering behavior, how to prevent combativeness in order to provide a safe environment for both patients and staff, and what to do when a patient had abusive behavior. To further enhance my knowledge regarding dementia care, I attended multiple conferences and in-services to keep myself well-informed with the current trends and issues. Having the skills and knowledge regarding dementia care, pathophysiology, effective therapeutic communication, and safety concerns and issues, I was given an opportunity and was invited to speak both nationally and locally in various conferences with regards to dementia. Also, I was invited to speak at my nursing school in the Philippines, and in one of the nursing schools here in the U.S. based on various aspects of Dementia care. To me, sharing Dementia knowledge to nursing schools was one way of giving back to the community.

The dynamics of the Filipino family involve having close family ties that hold when the parents get older and sick. It is an expectation and responsibility that the children are expected to take care of their parents when the parents have reached the stage of needing a lot of care and assistance with the activities of daily living.

I did not realize that one day that I would become a caregiver to my mother who has been diagnosed with dementia at the age of 68. My mother’s symptoms presented in a subtle way, which means the symptoms presented were not too noticeable to confirm that she was starting have to dementia during that time. I went on my normal routine and I continued to work, leaving my mother to take of care of my son who was 2 years old at that time. But at times, while at work, I had this constant fear within me wondering if my mother was safe to be left alone taking care of my 2-year-old son. The fear of falling was one of the issues that I had to deal with in the promotion of my mother’s safety. One time, I just got home from work and was looking for my mother. I could not find her around the house. I went to my bedroom and heard a sound. Apparently, my mother either fell or sat down on the floor and was trying to get my attention by tapping the spoon she was holding by the half-opened bedside drawer. When I heard and looked at the direction of the sound, I just said “Oh my.” I immediately tried to assess her to see if she had sustained any injuries or not, and tried to put her at ease her while I was checking on her. Luckily, she had no injuries, but again, she did not offer any response when I asked her what was she doing on the floor. Nor did she say why was she was on the floor. There was a time, when I called at home to check on my mother to see how she was doing. She would answer the phone and would say hello, and after that she would hang up the phone. I decided to install a second phone beside her bed, so she could answer it when I called. I ended up getting more worried because she would answer the second phone and again would hang up. I would even call my brother who lives close to my place to check on my mother. Luckily, during those episodes of the two phone calls, my mother was fine and no harm was done. Given these situations of falls, wandering behavior, safety issues and cognitive decline, it was time for me to hire someone to be with her to assist her with her daily routine and activities of daily living while I was at work. It led me to believe that, indeed, my mother was not safe to be left alone. I spoke to my family and my siblings on how to better take care of my mother who was requiring assistance now for her safety. I asked for the assistance of a paid caregiver who could assist me while I was still at work. The caregiver was able to provide 4 hours of assistance every morning 5 days a week. My brother, who was unemployed at that time, was able to assist me in taking care of my mother in the afternoon until I arrived from work. My family and I took care of her everyday including weekends.  Since I live close to my 5 siblings, I gave them house keys so they could come and visit my mother and can check on her every now and then.

Before I go to work, I would knock on my mother’s door. This was a normal routine for me, but this time, she did not respond. When I opened the door, she was confused and kind of mumbling. I thought she had a stroke, but she showed no signs of stroke during my assessment. I did not go to work that day, and I asked my brother to help me to take my mother to the hospital, which was a 5-minute drive away from her place. My mother was admitted to the hospital for 3 days due to urinary tract infection (UTI). During the 3-day hospital stay, it was then that the doctor informed me that my mother had dementia.

Slowly, my mother’s conditions changed. My dreadful fear became a reality. One time, my 6-year-old daughter called me while I was at work and said “Mom, when you cook meat, don’t you put it in a pan?” My daughter then said that my mother was cooking meat on a stove in a direct fire without any pots or pans. I immediately told her to turn off the stove. Another incident that I cannot forget was when I woke up at 3 A.M. and someone was knocking at the front door. I opened the door and it was my mother. Apparently, she wandered off probably somewhere between 1 A.M. - 3 A.M. When I opened that door, my mother said it was dark, quiet and there were no people. I took my mother to her room and asked her where did she go and other things in which she did not offer a valid response. I did a safety home evaluation and thought about how to ensure that my mother will be safe even though someone is at home. My mother’s care demands a lot of work and someone needs to be with her all the time. I spoke to my siblings and set up another family meeting. This time, I felt like I needed to be relieved in taking care of my mother even if it was just on weekends only. With the help of my family, I was still able to provide care to my mother, but I had to be free at least on the weekends. The weekend alternating care with my siblings was another challenge. My brothers would take my mom home to their place mid-morning or mid-afternoon and back on Sunday between 2-3 P.M. Not even a full 2-day weekend.  To me, that was a big help already, but at times my family and I could not enjoy the full weekends as my mother would be home mid-afternoon on Sunday and cannot be left alone, by herself. My siblings were also busy with raising families of their own and have other priorities as well.

As the dementia progressed, communication became a challenge. My mother started to have aphasia. My mother would have this blank stare and flat affect and would only communicate with simple nod or sometimes a yes or no response. I tried my best to meet the needs of my mother with regards to communication by pointing at objects. During mealtime, I would point to which food that she wants to eat. I made sure that when I talked to her through direct contact that it was answerable by a “yes” or “no” response. I also ensured that when I communicated with my mother, the background noise was reduced and there were no distractions from the immediate environment. With regards to toileting needs, my mother, at times, would not tell me exactly if she needed to go the bathroom. I would look for cues from my mother such as going to the direction of the bathroom and trying to hold onto her clothing protective diaper. At times, my mother will be successful in using the bathroom, but there were times I could see that her diaper is falling off and she was not able to wipe herself off and do the perineal care. I would take my mother to the bathroom and would just clean her up without any word of blame towards her for not being able to clean herself. I tried to maintain her independence by giving her the washcloth or wipes so that she would be able to clean herself. During perineal care, I tried to make it a positive task by continuing to talk to my mother, making her feel at ease.

I remember from during one of my conferences that I attended and from reading various dementia books, that you can to stop someone from wandering around by placing a red stop sign by the door, so that anyone who has dementia sees the stop sign and will prevent them from leaving the house or facility. As part of the home evaluation and through reading about behavior management for patients with dementia, I found that this was very effective. I also ensured that there was nothing by the door that indicated that someone was about to leave. For example, I removed the coat rack and cleared the door by not putting any shoes near the doorway. I also put Christmas bells by the door knob which alerted me when someone leaves the house or when someone is opening or closing the door.  All our exit doors had red stop signs posted. I remember one time, my family and I went to McDonalds to buy chicken nuggets for my son. My mother would always try to get the food from my son and would eat the French fries. I bought her a sandwich, but she prefers to eat the chicken nuggets and French fries. Since she eats small, frequent meals and is unable to finish the whole sandwich, we decided to buy her chicken nuggets with French fries, which she enjoys eating and was able to finish the whole meal.

There is one incident that I had fond memories of while taking care of my mother when she had dementia already. While watching TV in the living room, my mother told my sister-in-law, Marilyn, that the famous actress was her best friend and even told my sister-in-law that the actress was married to an actor. As far as I know, the actress was not my mother’s friend. My mother and I would both watch the show of this famous actress. My mother was right in a way that the actress is married to an actor. With regards to the knowledge of memory orientation for someone with dementia, Alzheimer’s patients will remember their long-term memory.

As a caregiver to my mother who had dementia, there were so many challenges in dealing with this disease. It really changed my outlook in life. As the saying goes, I thought “I’m in it for a long haul” as I cared for my mother who suffers from this disease that has no cure. I was concerned about how I would be able to care for her while raising my family and while working with multiple conflicting priorities. Even with the alternating weekend assistance of my siblings in taking care of my mother, a decision had been made that my mother’s care needed to be in a setting where there will be a consistent caregiver. With a heavy heart, my family life responsibilities, and my siblings’ priorities with families and kids, it was time for my mother to go to a boarding care home setting which would be less restrictive, with consistent caregivers, and with activities that she could enjoy and could relate to people in the same age group. The board and care home that I placed my mother in was a 25 min. drive from my place which will be of great advantage to my mother’s children and grandkids so that all of us will be able to visit my mother frequently.

My mother staying at the board and care was great. When we visited her together with her grandkids, my mother was very happy to see all her children and grandkids. But not long after my mother’s stay at the board and care, I received a call from the board and care administrator informing me that my mother’s care was becoming heavier, and that the board and care would not be able to provide. At first, I thought maybe I could send her to the Philippines so she could be taken care of by her nieces, nephews and other relatives. But then I told myself, if I sent my mother to the Philippines, I would still be thinking of my mother and another reason being that my mother’s children cannot visit her in the Philippines. This time, it was another harder decision to make. After weighing all the pros and cons of the nursing home care setting, I started to look again for a nursing home care setting that is closer to home. While at the nursing home, I also rehired the same paid caregiver for consistency of care to provide assistance for my mother’s activities of daily living and to provide assistance with mealtime. 

My experiences working in the dementia unit for 15 years was very helpful for me in taking care of my mother as I was able to incorporate the best practices and safety features that I have learned. I followed what was in our dementia unit that would be applicable to my mother’s home setting. The various references materials that I read and bought were very useful for me in my day-to-day care for my mother and other patients that had dementia diagnoses. I googled for other Alzheimer’s products and I found out that, indeed, there was an Alzheimer’s store. Upon learning this, at every opportunity that I was asked to speak regarding dementia, I would incorporate the various products that I have seen being used at the unit where I worked and what I used at my mother’s house. Also, if they needed more additional information and other equipment’s, in the care of dementia, at my presentation, I would refer them to the Alzheimer’s store.

August 5th, is my mother’s birthday. I truly miss her a lot and I think about her every day. Looking back, my mother was with me for 21 straight years before she was placed at another home care setting. My family and my two children were very lucky they were able to see my mother and were provided care by their grandmother.  Together with my siblings and grandchildren, we will always cherish my mother forever and the time I spent with her and the loving care she provided to my children and to my mother’s children.

By sharing my dementia story, I hope families can learn and overcome the challenges I have faced from taking care of my mother.

Thank you for listening and good luck!