Thank you for have this forum here. I really need some advice now..... and I will try my best to make my story clear with my poor English......
My mom’s live with cancer for 6 years, she had been through 4 critical surgeries and over 45 chemo sessions. After her second spinal surgery last December, mom decided to spend her rest days in hospice since the tumors are already spread out in her entire system.
Our family moved to Canada 20 years ago, but I only stay with them for a few years, then I went back to Asia alone, found a good job, met my husband, live and work and truly enjoyed my life there. 3 years ago, mom’s tumor transferred to her lymphatic system, it was quite serious at that time, so I quit my job and fly back to Canada for a few months to be with her when she’s having the chemo session. I started my 13hrs long flight back and fro every few months since then (thanks for my husband’s support and understanding).
I flied back to Canada again immediately when heard about mom decided to go to hospice, as the Oncologist told us that without any treatment, mom can only live for 1 or 2 months more. My dad, my brother and I had a very hard time dealing with that information, and we spent the whole Chinese New Year holiday preparing for the worst. My husband also took some leaves and went to Canada to help us pre-arrange all the funeral stuff.
Surprisingly, mom’s doing very well in hospice from the first day, her recovery from the surgery is great. Pain is now well controlled, she always in a good mood. Now it’s her 6th month in hospice, she still eats well, sleeps well, and shows lots of energy in her reclining wheel chair everyday (she cannot walk by herself). We are happy to see her like that. But we also feel confused ....... because we don’t know what to do next.
My mom, as a traditional Chinese lady, is always polite and doesn’t want to bother other people, even her nurses. So she prefer us (my dad, my brother and me) to fulfill her needs rather than asking nurses. My dad’s 75, he has to drive twice (sometimes three times) a day from our home to hospice just to help my mom eating her meals. He dropped almost 20 pounds in three months. Now since I am back to Canada, I am switch shifts with my dad, so he only needs to go to hospice at noon, leaving mom’s dinner and other routine (brush teeth, massage legs, clean her room ...... ) to me. My brother always visit mom after work, so his assignments will be clean her eye glasses, charge her cell phones, refill her water jar ..... we are doing these everyday for a quite some time, rain or shine. (For professional care like sponge bath, changing diapers, giving shots, move her from wheelchair to bed ..... mom will still go for nurses.)
We tried to talk to my dad, maybe he doesn’t need to visit mom everyday since she’s quite stable now, she may need us more when she’s getting weaker in the future. Dad can save some energy now..... But mom always call home and say she needs dad to do this and that for her ......
Social workers tried to discuss with us, maybe they can send my mom back home or to other facilities to save our effort. But mom refused to do so. She feels more secured in hospice, she’s worry if she moved back home, we can be all busy with our own stuff, then if she needs someone, we may not come to her immediately (team mentioned about sending nurses to our house few hours a day, mom rejected). She just wants to stay as long as she can in this hospice, surrounded by professionals, but with family members visit her three times a day.
Nurses always say my mom is the best patient in this hospice, cause she’s very independent, and has less requirements than other patients ...... my mom really love this great relationship with her nurses ......
We are glad to see mom enjoyed her life in hospice so much, very happy to see her outlived the Oncologist’s prediction (was only 1 or 2 months, now it’s 6+), and we can tell now she has the intension to prolong her life. But since mom refused to go home or move to other facilities, and also refuses to let nurses help but only want us to assist her meals and other routines, sometimes we feel tired and frustrated, then feel guilty for feeling so.
My brother and I was in bad mood these days, we had a fight with mom cause we try to reason with her, as she’s quite stable now and looks like she will not leave us anytime soon, if she really wants to prolong her life, maybe we should discuss with her palliative team see what we can do for the best. But her “queen-standard care” from us may also need to be adjusted a little cause we all have our own life (and dad’s health) to take care, she needs to coop with nurses afterwards even she doesn’t like it. We can seek for professional caregiver’s help, she will still in good hands, just not our hands. Mom’s getting very emotional about our suggestion, she said: “I am a dying person, why can’t you just keep me comfortable and happy until the last day?” ........... And dad’s mad with us for letting mom upset ......
Because we want to make mom feel happy, so we treat her with queen-standard care from her first day in hospice, even we are almost burnout sometimes. We pulled every strength trying to make each of her wish happen, doing the best we can just to make her feel secured and comfortable, but now she’s used to this kind of care, and we are stuck with the high standard we created ........ My brother already took the maximum of his leaves from work; I miss my husband in Taiwan everyday; and we all very worried about dad’s health .......
What can we do?
Juju