Taking on the role of the caregiver
This retiree shares his caregiving experience with his wife who has Alzheimer’s disease.
BY: Eleanor Yap
Seventy-three-year-old retiree John Ee is no stranger to Alzheimer’s disease. He is a caregiver to his 76-year-old wife, Jeannette, who suffers from early-stage dementia and he has been at her side since her diagnosis in 2010. Though she is quite alert and does not need much help, John is committed to be there for her as long as he is able. The two have been married for 48 years and have two sons who have settled down in Australia.
The retired army officer opens up to Agelessonline about his role as caregiver and the lessons he has learnt:
Can you share how was Jeannette first diagnosed?
Jeannette, who used to be a retired teacher, met with a traffic accident in July 2008 when I was overseas. She was driving alone and was on her way to fetch her three sisters to a tea party for one of her sisters’ birthday. She did not sustain any body injury even though the front of the car was damaged when she drove into the back of a bus at a slip road. When she was taken to Tan Tock Seng Hospital (TTSH), she was admitted and subsequently diagnosed as having a blood clot in her brain. About two months later, the neurologist detected another clot. A year later the clots dispersed but unfortunately, they left scars.
In September 2009, she had a “seizure” and was admitted again for about three days. About two months later, I noticed she had some functional decline. She would be somewhat confused with the day, date, time and place. I mentioned this to the doctor during a follow-up visit. With a referral letter she was accepted at Apex Day Rehabilitation Centre for Elderly at Bukit Merah for physio and occupational therapy in December 2009. She was at the Centre twice weekly in the afternoon.
It was during one of her visits at the TTSH’s General Medicine Clinic when I mentioned Jeannette’s lapses in her memory. The medical officer referred her to the Geriatric Clinic there. In November 2010, after some assessments, Jeannette was diagnosed as having early stage dementia. The medical officer recommended her to join the activities at New Horizon Centre at Jurong Point, which is one of five centres under Alzheimer’s Disease Association. Presently, she goes there twice a week.
What is Jeannette’s condition currently?
Jeannette has moods. She has short-term memory sometimes. She can remember past events and even names though. She gets confused with “time and place”. I dispense and supervise her medication. I prepare her meals if we are not eating out. She needs assistance in showering and grooming.
I do not have a helper at this point as I feel that as long I am still able to look after her, I will continue to do so. We have a part-time cleaner who comes fortnightly to tidy up the flat, clean the bathrooms and do some ironing.
What medications is she on?
Presently she is on the following medications: Phenytoin, folic acid, Exelon Patch 5, Metformin (diabetes), vitamin B complex, calcium carbonate, glucosamine and Simvastatin (cholesterol).
How do you make the environment safe for her at home if she is alone?
I am confident to leave her at home when I run errands, e.g. doing some grocery shopping, having a haircut or even attending monthly club meetings in the evenings. She will be safe indoors as long as she does not step out of the home. When she is alone at home I would pad-lock the grille gate. I would instruct her to call me on my mobile phone when she needs any help. There is a spare set of keys kept in one of the drawers. Our goddaughter, who also has a set of keys, lives at the next block of flats and I would call her to assist if necessary. So far, Jeannette has never asked for assistance.
I would prepare the meal, e.g. lunch and/or dinner for her. She is able to help herself to it. If I have to be away for longer periods, I would arrange for her to be with her sister with a list of instructions for her on grooming and medications.
How was it like to see her deteriorate?
I hardly notice any deterioration. However, it can be frustrating sometimes with Jeannette’s changing moods. I have learned to accept her condition though.
Do you think she is fully aware of her condition?
Yes, I believe so. She seems to be aware of it as sometimes she tells her siblings that she has dementia.
What keeps you going?
My religion keeps me going. It gives me a source of strength to care for my wife as it also enables me to maintain my belief and practices. My wife and I would spend time together at home and go out to the hawker centres for meals occasionally.
Can you share what is your typical day like with your wife?
I have developed a daily routine to follow, e.g. I wake up at least about 30 minutes before my wife at 5am, and prepare a light breakfast for her to take with her morning medications. I assist her to shower. I ensure that she dresses correctly. Twice a week, I will shampoo her hair.
As Roman Catholics, we attend daily Mass at St Theresa’s Home chapel at Upper Thomson Rd, in the morning at 7.30am, and at 10am on Sundays. We would have breakfast at a hawker centre with some church friends after the service sometimes.
At home we will watch TV, mostly news, documentaries and movies. She would take a nap in the afternoon. I would do the laundry twice weekly. I would prepare a simple meal for lunch or dinner if we do not eat out. We would attend shows or a concert with some friends sometimes. We would visit our siblings at least once a week.
She would go to bed at about 10pm or 11pm and I would stay up to check the e-mails and go to bed at about 12pm.
What happens if her condition further deteriorates? Will you get a helper?
When that happens, and when I feel I cannot cope in looking after her, I will consult her brother, who together with me, are Jeannette’s donees, and we have the Power of Attorney to property matters and personal welfare matters. We were registered at the Office of the Public Guardian. We would perhaps decide to place her in a home. This would be the last resort I would want to do. I will not get a helper as I want to care for her personally.
How do you deal with the stress of caregiving?
- I would avoid an argument in any contradiction that would arise in our conversation. I would pretend I do not hear what she is talking about and walk away from her as I know she would forget the incident after sometime.
- I realise that it is pointless to try to correct her. I would turn on the TV and she would join me to watch a documentary, the news or a movie. We go out with some friends for lunch sometimes.
- Having light moments such as telling jokes when watching TV with her.
- Change the subject of conversation should there is disagreement.
Could you share six lessons learned from caregiving?
- Acknowledge and accept that the person has dementia.
- Ensure medications are supervised and dispensed as prescribed by medical officers.
- Be understanding and tolerant with the person’s antics and demeanour.
- Avoid contradiction with the person with dementia in a conversation should the person speaks out of context or illogically.
- Attend talks arranged by institutions like the Alzheimer’s Disease Association (ADA) and the Asian Women’s Welfare Association (AWWA). The talks cover a good range of topics to educate and improve your care for the person with dementia. There would normally be a sharing session among the participants following the talks. This session can be very useful and educational as one learns from each other’s experience with similar situations at home.
- Take care of one’s health and continue to engage social activities such as going out with friends for a meal once in a while, and volunteer in community service and/or a religious organisation.
What is your wish list for Singapore in terms of caregiving?
- Some countries, such as Australia, provide caregiver allowance. The allowance could defray transport expenses for some caregivers or it could also help to subsidise a domestic helper’s salary. Perhaps the Government would want to consider this policy.
- It is noted that the Government had recently, in July 2012, made some changes in Government subsidy for the intermediate and long-term care in the community. This is a positive move to ease the financial burden of families with a member needing care.
I understand you also volunteer at ADA?
Since I accompany Jeannette to the day-care centre twice a week, I volunteer to join in the sing-along session for English
songs for an hour, before their lunch break. There is a Catholic nun, who is with the group and who plays the accordion, and one Eurasian gentleman, a volunteer, who blows the harmonica in this session. Jeannette, who plays the organ in church would play the electric keyboard. Sometimes we sing English karaoke songs. There is also another group singing Chinese (Mandarin and dialect) songs. At their lunch break I would have my own lunch elsewhere, and would either go to the library or do grocery shopping.
As there are three other Catholics in the group, we pray the rosary for about 30 minutes after the one-hour rest period at 2pm.
I would also join the group for outings and assist the staff to ensure that the group remains intact.
Anything else that you would like to add?
- I would recommend families to take their loved ones with dementia to ADA centres as their loved ones can receive proper care during the day, at least, when the family member is working. The staff and volunteers at these centres are friendly, compassionate, gentle, caring and experienced. To enrol at the centre, one must get a referral from a doctor.
- I would strongly encourage caregivers, even domestic helpers who are caregivers, to attend the talks organised by volunteer organisations, namely ADA and AWWA. It will certainly enhance one’s understanding and appreciation of taking care of people with dementia. To me, it is a continuing education as I learn enormously from other caregivers especially during the sharing sessions. I learn how the other caregivers react and handle situations that are similar to the ones I encounter.
- Do some research on the subject of caregiving. There are publications on caregivers written by medical professionals such as “A Resource Booklet For Carers”.
- There are topics that are very useful in caregiving, such as learning to be a caregiver; caregiving with the family; managing caregiver stress; coping with caregiver grief to name a few. Look up in the Internet for these articles and information if you like.
- Have a strong faith in whatever religion you believe in. This will reinforce the bonding between the caregiver and the receiver. It will also give the caregiver the strength to carry on, and view the situation positively.
- The projections on the number of dementia patients only will strike 80,000 by 2030, according to the Health Promotion Board. Besides, there will be other patients to care for, needless to say more hospitals and nursing homes will be set up in the future. One participant mentioned at the World Alzheimer’s Day 2012 Public Forum in September that there is a limited number of places for the nursing course at the polytechnic. Where do we get the nursing staff? Must we rely on more foreign nursing staff? Perhaps the Government should consider introducing a modified National Service for our young women, and assign them as medical orderlies and other non-combat roles in the SAF.
** Special thanks to Dr Ong Yong Lock, principal staff-attending physician, Department of Psychological Medicine and Community Psycho-Geriatric Programme (CPGP), Changi General Hospital, for looking over the article.