Their stories may be unique, but many of their challenges are not. The caregivers of our patient and former patient generously shared their stories to encourage other caregivers – you are not alone.
What were some of the challenges you faced?
When my father was in the hospital, he would frequently ask the nurses to call me and asked me to pick him up, as he was disorientated due to dementia. Eventually I took care of him at home, with help from a helper. As he could not walk, lifting him and transferring him was challenging when we did not have a hoist. My then helper left after a year as she could not handle the transfers.
It was very hard in the beginning as my father would get up in the middle of the night and scream repeatedly. It was tiring and stressful. On my helper’s off days, I had to clean up my father alone, and I did not know how to do it. But that’s my dad, that’s my duty.
Initially it was very, very difficult. But once you get used to it, it becomes better. There were still times that he could be very difficult – he didn’t want this, he didn’t want that.
Eventually I found a helper who took the initiative to go for courses to learn how to look after my father better. I would say she was better than me. My father passed away at home, which was his wish.
How did you cope with the caregiving stress?
I played music with my band.There were times when I was very depressed, and I could not talk to anybody. When I go to my doctors, I speak to them about my situation. They tell me to channel my stress, depression and anger all through music. So I did that, and music actually helped me to cope with the difficulty. If it wasn’t for music, I don’t think I would be here.
There were also family members and friends who reached out to meet up to help keep my mind sane. They would visit me at home, and cook with me to keep my mind off things. It’s good to have people around besides music.
What were some memorable moments in this journey?
I was scared and worried when the doctors told me that my father was deteriorating, however he outlived his prognosis for 5 years. These 5 years were very memorable. Every year on his birthday, I would throw a big celebration for him – big parties with his musician friends. I played the song he used to like to play on the clarinet. All these small, small things – he may not show or tell me that he’s happy, but I know he loves it a lot.
How has Assisi Hospice helped?
The care team was very helpful and explained to us what to expect. It was very comforting as there was only me and my helper caring for my father. They also taught my helper how to record my father’s vitals and intake which was helpful when we brought him for his appointments and could communicate what was happening to his doctors. They prepared me about what to expect in my father’s final days and reassured me not to think that he was suffering.
Do you have advice for other caregivers?
I would encourage family members to bring patients who are still mobile to visit Assisi to assure them that they are not alone and that there are other patients who are in a similar position. For caregivers, don’t keep stress to yourself – talk to others, find an avenue to express and release your stress.
What are some of your experiences with caregiving?
I have never taken care of anyone prior to this. I do it because this is what I promised my wife the day we got married.
Stress has caused me to think about taking my own life. However, there is no point in trying to run away from my responsibilities and it is my responsibility as a husband to look after my wife.
I feel bad about burdening my sister to assist me in caring for my wife though, and burdening others as they worry about me.
What are some of the challenges you face as a caregiver?
It is not easy being a caregiver. Sometimes I’m sleep deprived as I need to bring my wife to the toilet at night. It is easy to get frustrated in situations, but it is important to cool down first.
Sometimes I get agitated with my wife but no matter what, I believe that I cannot run away from my responsibilities and must carry on. I got to a stage when I was very angry with God and wondered why God didn’t take me.
Even though I don’t have a choice in being my wife’s caregiver, I still feel that I should do a good job, Sometimes I also tell myself I should put myself in her shoes. If today I am her, how would I feel?
What is helpful to you?
I appreciate the Assisi Hospice social worker who has supported me emotionally. The healthcare workers who visit her, support and speak to her are also very helpful.
People have affirmed my efforts and reminded me that I need respite, although I still feel strongly that looking after my wife is my burden and I have to shoulder it. It is important to be patient and to do things well. My wife had wanted to commit suicide twice – I reminded her that hardships were something everyone had to go through. I understood where she was coming from through my previous experience of going through pain after an accident. I pray differently now and recognise that things happen in God’s time.