Finding My Strength: A Caregiver’s Journey
Post on 06/11/16
After having worked more than 20 years first as an accountant and then as a translator, Ann was enjoying her early retirement jet-setting round the globe when her husband was struck by a debilitating brain-stem stroke while on a monthly trip to his office in Shanghai. Her husband was the main breadwinner for the family of three and her pillar of strength. All of a sudden, their roles were changed.
Once dependent on her husband, she is now his caregiver and motivator. Besides looking after her husband, Ann also had to involve herself in her husband’s company in order to protect his share interest as well as grapple with court issues to get the power to act as Deputy for her husband in order to manage his assets and finances.
With these experiences behind her, Ann is now a volunteer with the Singapore National Stroke Association and hopes to help and encourage other stroke survivors and their caregivers.
This is Ann’s reflection on her journey.
In my over 30 years of marriage, my husband had been my pillar of strength and the one who took care of me. Although my husband had a busy working life as director of a successful trading company which he co-founded with only five thousand dollars starting capital, he still found time to prepare breakfast for me everyday, cook for my family of three occasionally as well as do the grocery shopping for the family. All these changed when my husband suffered a stroke. I not only could not rely on my husband anymore but had to be strong to be his caregiver and motivator — a role I never thought I was strong enough to assume. Before my husband had a stroke, I was not a person of strong character and always had to turn to my husband whenever I encountered any major problem.
Although my husband and I knew about stroke and its symptoms and the response required like getting to the hospital as soon as possible, we did not know that stroke could be so debilitating. We thought that at the most, my husband would still be able to walk with a stick after a stay in hospital. My husband’s elder sister and brother both had strokes but they recovered enough to be able to walk again. Never did I dream that my husband would suffer a stroke that would cause him to be “locked-in”. Locked-in syndrome is a condition in which your entire body, except for the eye muscles, is paralyzed. People are able to think and communicate through eye movements, such as blinking of eyes. A number of people I have spoken to, including stroke survivors, told me that they never knew that people could be so severely disabled by a stroke. My husband’s stroke, like up to 80% of strokes, could have been prevented. My husband had high-blood pressure which put him at risk of getting a stroke but instead of leading a healthy lifestyle to reduce his chances of getting a stroke, he smoked about two packets of cigarettes a day and slept only about 5 hours a day as he was a workaholic.
My husband had a brain stem stroke five-and-a-half years ago at the age of 62. He had felt dizzy and nauseous after a flight from Singapore to Shanghai. He didn’td get lbetter the next day after sleeping for more than 12 hours. Alarm bells rang when I detected some slurring of speech on the phone when I spoke to him so I advised him to go to the hospital immediately. I guessed that my husband had suffered a stroke I thought that it may not be serious. After all, he could still walk assisted into the hospital and talk lucidly to me four hours after being admitted.
Imagine my shock when I received a call from my husband’s employees in the middle of the night informing me that he couldn’t breathe and the doctors had to performed some emergency procedures to save his life. I flew to Shanghai immediately after the phone call.
My two weeks in Shanghai were terrible. The hygiene conditions in the hospital were appalling and we had to deal with the insurance company which kept calling us for my husband’s medical records to support the insurance claim before they would arrange an air-ambulance flight for my husband back to Singapore as well as look for a doctor to give a second opinion on my husband’s condition. When I saw my husband in the hospital, he could only respond by blinking his eyes. His whole body was paralysed and he had to be intubated. The next bad news were from a neurologist that we called in from a hospital affiliated to the one my husband was in. He told us that my husband would be wheel-chair bound for the rest of his life and that the hospital treating him was partly responsible for the state he was in because they were not aggressive enough in the treatment. What happened was the doctors could not conclude from the CT scan and MRI done on my husband whether his stroke was ischemic or hemorrhagic so they just put him on a drip and sent him to a private ward for observation without any doctor at his side until they had to save his life when he had difficulty breathing.
On my husband’s return to Singapore, we were relieved that my husband only needed to stay in ICU for one night. But our relief turned to despair when shortly after transferring my husband from the High Dependency Ward after almost 90 days’ stay there, the acute care hospital talked to us about discharging him. During his stay, he was not given any Physio or Occupational Therapy other than Chest Physio and being transferred to sit in a wheel chair like the author in ” The Diving Bell and The Butterfly”. During my husband’s stay in the acute care hospital, nothing was conveyed to us about what other options were available other than sending my husband to a nursing home on discharge and why my husband did not have any therapy, not even standing on the tilt table, while there. I was also ill-equipped to be a caregiver for my husband as other than being trained to do tube-feeding and cleaning for my husband, I did not know how to do stretching exercises to manage his muscle tone as well as other conditions of his stroke. I was told that the acute care hospital had applied to community hospitals for my husband for rehabilitation care but no hospital would accept him because of his low rehabilitation potential.
Although my daughter and I had already conditioned ourselves to the fact that my husband would be disabled, we thought that he would still be able to gain some mobility after therapy. Therefore, we were really saddened by this news. If my husband could not go to a hospital for rehabilitation, there was no way I could help my husband recover some mobility on my own.
In desperation, my daughter scoured the internet and called up a few rehabilitation hospitals to try and persuade them to take my husband in by assuring them that my family would provide as much support as possible in the nursing care (including trachy management) so that he would not be an added burden to the nurses. By a stroke of luck, a rehabilitation hospital agreed to accept my husband. In order that my husband could stay on at the acute care hospital until we found a rehabilitation hospital that would accept him, I had to upgrade my husband from “C” class to “A” and lose all the government subsidies backdated to day one of his admission. His hospital bill immediately jumped to more than double. I did not have second thoughts about doing this as I wanted the best for my husband. My husband was a fighter who would be able to accept life as a disabled person with a purpose in life but not someone who could only sit in his wheelchair and stare into space or watch TV.
The rehabilitation hospital not only trained my daughter and myself as caregivers to do stretching exercises to manage the tone in my husband’s hands and legs as well as to illicit some active movements but also helped my husband regain control of his bladder. His health issues caused by stroke (like his dry eye filament problem that caused him pain and irritation) and tightness and pain in his limbs were also addressed.
On my husband’s discharge from the rehabilitation hospital, I had become a caregiver who was confident of taking care of my husband at home. However, I had to deal with another problem and that was my husband could not continue his rehabilitation at the hospital as an outpatient. To ensure that this is not going to take be the end of the road for my husband’s rehabilitation, I decided to buy all the therapy equipment that he needed like the tilt-table, Mottomed bike, mobile arm support, Bioness, etc. and also engage home therapists.
Now my husband still continues with therapy at home and is still making small improvements like holding a marker to a write with assistance, holding himself up in a sitting position momentarily without assistance, etc. He has moved on from a state of despondency to taking charge of his own recovery like giving suggestions for what he wants to achieve for therapy, bowel management, his general health and well-being, e.g.watching his weight to make sure he is not overweight and making sure he still has muscle mass in his legs. He also makes sure that I, as caregiver, am taking care of myself by taking three meals a day and having enough sleep. My husband’s general health has also improved – he no longer require suctioning except once before he goes to bed at night in order to help him sleep well without much coughing, his muscle tone is good and his hands are not contracted. Seeing that my husband is determined to get on with life and make the best of it gives me the strength as caregiver to continue caring for him. At the same time, I also receive a lot of support (including emotional support) from my home therapists.
I still feel a tinge of sadness when I see families enjoying their meals together or doing things that my family used to do. But at the same time, I tell myself that at least I am able to devote my time to caring for my husband without having to worry about the expenses of the family. I also find consolation in the fact that my husband had 62 good years of life before his stroke. He fulfilled his dream of running his own company and enjoyed his work (which not many of us do). If my husband had a stroke, say 20 years earlier, it would have been disastrous for the whole family for not only would I not have the money to pay for my husband’s care, I would also not have the time for him as I would have to spend time raising my daughter.
By Ann Tan, Caregiver.
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