Come this year May, it would be five years since I quit my corporate job to care for my mother full time. I’ve had what people would consider as a successful career, yet I willingly let it go to be a full time caregiver. Even though with my salary then I was able to afford to hire a full time maid or afford the cost of assisted living.
My mom has end stage Alzheimer’s now. But I did not quit my job because of Alzheimer’s. In February 2017, she was hospitalized due to acute jaundice and ascites from the flare of her hepatitis B. She had liver cirrhosis and her liver was failing. Her cognitive functions were reasonably intact during that time but she has shown signs of forgetfulness for many years prior.
By March 2017, I was on one month no pay leave to try to sort out things- eg get the house elderly friendly by installing railings, rearranging furniture, doing repair, try to hire help, etc. Actually, my company does not really allow their employees to take no pay leave. The request had to go to my COO for approval and he signed it without any question. By then, I had gotten a friend who came to temporary help out but it is only for a month or two till hopefully stablilize as mom kept insisting she could be okay on her own.
Then in April 2017, she had a fall. She was just walking with a walker and then she suddenly fell on the floor without any warning. My brother was nearby and quickly carried her up. She was in a lot of pain. We took her to ER and doctors did not find any fractures except there was an old hairline fracture. Still, she was moaning in a lot of pain.
The next morning, as I went to tell her I was leaving for work (I had the lady at home caring for her and my mom was really well cared for but again this arrangement could only be temporary), my mom grabbed my hand and with fear in her eyes said, ‘Do you need to go work today?’.
She never said things like that as she was always a very tough person (at least on the outside). Even when 22 years ago when she was undergoing the harsh radiotherapy treatments that took such a heavy toll on her that she had to be hospitalized, she did not agree for me to resign from my job. I had wanted to resign then but she told me it would make her go faster if I did.
That morning, my heart just made the decision.
I went into office that day, typed out the letter and submit my resignation after 6.5 years of working with the company. HR sympathized with me as they said they knew I have exhausted all possibilities. My boss told me the door is always open and he kinda expected to see me back in 3 months because physically, my mom looked to be in a very bad shape. I was told by someone who had volunteered in hospice that my mom could probably have another 3 months left (mom was all yellow with jaundice, ascites caused bloating in her abdomen and ankles but the rest of her body was very skinny. She was also very low in energy and hardly could move.
When my mom was hospitalized due to jaundice, all the hospital did was to give her IV drips to hydrate and provide her with the nutrients. Then laxatives to flush out the toxins from her body. Within that few days, I saw improvement in her and realized nutrition is very important.
My mom was a former nurse and when we were growing up, she always ensured she gave us proper nutrition. She also kept reassuring me that she was eating well and had complete nutrition. I was working then and took her word as good. But thinking back, I believe that she already had early symptoms of Alzheimer’s where she could have not eaten but thought she did or forgotten to eat. It was after when I quit my job and was with her the whole day that I knew she was not eating well:
- she did not eat but thought she had eaten, or
- she had just eaten and forgotten she has eaten, then she went to eat again and felt unwell
The specialist started her on Baraclude (Entecavir) which is medication for her liver. At the same time, I saw to it that she eats at least 3 times a day. My friend who came cooked for her simple nutritious meals and sat with her to make sure she ate her meals. Within a month, I could see the improvement in my mother’s energy levels and mood from nutrition and good companionship.
I had thought of hiring a full time live in maid but so happened around that period, there were a few reports of maid abusing the elderly being reported in the news and circulated in social media. That is, someone hire a maid to look after their elderly parent but felt something was off. Then they installed a spycam and caught the maid literally beating up and abusing the elderly. I also heard from neighbors and my mom’s friends about maids who ran away, as well as collaborating in house break-ins while the employer is away. That was when I decide it would be better I resign and look after my mom myself.
In these 5 years, of course there have been ups and downs. I had always been better working in the office than taking care of the home. As a caregiver, I had to also manage cleaning, grocery shopping, cooking and taking my mom for checkups. I had felt overwhelmed when I feel I was not getting enough help.
That time, Alzheimer’s was also setting in and in beginning stages, often they can be difficult as they themselves are going through the confusion of feeling that they are slowly losing their mind. I did not know then because when I voiced my suspicion about the possibility of her having Alzheimer’s, everyone had reassured me it was just that she was ‘forgetful’ and it was part of old age. Even the doctors did not believe me as that time my mom spoke so well and eloquently.
But frankly, a lot of what she said was just bull, she was making up stories as she went along. And because she was so convincing, it was her words against mine and she managed to make me look as if I was overreacting.
During that period, when she was annoyed with me, she would say hurtful things that pierced through my heart and really upset me. So there are times I thought it would be better that I just went back to work and hired someone to look after her. But then, these are often fleeting thoughts that would go off after I calm down.
Knowing what I know now about Alzheimer’s, I realized it is normal for them to behave like that and I should never have taken any of her words personally.
In summary, there have been a lot of ups and downs during these five years. I have changed a lot as a person. I used to have bad temper and could not hold my tongue but I have now learned it is foolish to get angry with her and take it personally when is really not her fault. And she would forget after 5 minutes while I am silly to be fuming inside. I also used to be quite strict with timing and schedules but when we are caring for someone, we have to be flexible.
Through caring for her, I learned to let go, manage my emotions, curb my anxiety, stop becoming a control freak (because things would never happen according to plan) and learn to manage time, tasks and take a break when need to. These are life skills that I would not be able to learn and apply even though I attend the most expensive courses or seminars.
Caring for her is one of the best decisions I have made in life. I have no regrets except that I should have done it sooner.