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My mom in hospice (sorry this is very long) 
Started by Vanjuju
23 Jun 2013, 10:40 PM

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

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Reply by Brayden
24 Jun 2013, 1:13 AM

Dear Juju,
Thank you for coming onto this site. I can feel your frustration in trying to please everybody. It would be of concern to me too if my 75 year old father felt he had to make three trips to the hospital every day. That could cause serious health issues for your father. You and your family are to be commended for looking after your mother so well. You are wise in seeing that you cannot continue the way you have been responding without the risk of burnout. Then you would be of no use to your mother. You may want to discuss your situation with the social worker in the Hospice facility to  determine how you could all cut back a bit. It very much sounds like your mother does not truely need all the time that your family is giving her. You still all have to look after your own needs and not feel guilty about it. You are only human. Please keep coming back to us as you will hear more from others. Peace
Brayden
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Reply by pudding
24 Jun 2013, 1:21 AM

Hi Juju that is an amazing she is doing well..even great. My mom was in a hospice for a month and seemed to be in better health for the first two weeks, insisiting on going for walks around the hospice. Myself, dad - who is 76 and my brother took turns in being with her, I agree maybe talking to the social worker will help. It is exhausting, emotionally, physically. The staff at the hospice are usually great, and supportive too.


Sending you positive thoughts. 
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Reply by cocopham
24 Jun 2013, 2:26 AM

Dear Juju,

How much do i feel for you in your situation!!!...Though it is a wonderful miracle that your mom outlived the prognostic of the medical team, it is also important that you need to find some professional help for yourself and for your mother. By this  i mean to seek the help of a psychologist or social worker who can mediate with your mother, to make her feel more secure in the hands of the professional staff.
I am also from Asia and deeply understand your mother's fear....Would you think of an alternative by bringing a relative from your country to take care of your mom? That way you can go home to your husband and children; in Asian culture, it is very important to take care of our elders ourselves, but you also need to take a break and your own life is in jeopardy when your absence is too long vis-a-vis your husband...

This is a very difficult situation, a huge dilemma; but we need to bring in some balance in the care of your mother...I feel that your mother is very insecure without a family member and that is the nick of the problem.

We cant do much to help you in a practical way, except to listen to your worries and frustrations...Please keep on writing, your english is quite good and dont worry about it! I understand you very well and will send prayers to your mother, father and yourself...Take care and we are here to listen,

cocopham 
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Reply by Vanjuju
24 Jun 2013, 2:46 AM

Thank you Brayden, thank you pudding, 

Yes, we all believe there’s miracle that my mom can live in hospice for more then six months, and still very energetic now. Maybe her palliative team are just super great. 

Thank you for your suggestions about social workers. I think my brother and I need to set a private meeting with social worker soon, at least, we need their help to let us know how to take care of my dad at the same time.

Dad’s like a robot now. He’s like inputed a mission in his head -- “my wife is dying, so I have to do everything for her before she go”. But my brother and I watching him keep losing weight, getting wrong information (sometimes we feel dad cannot organize the conversation in his head), forget things, sleep less and less ..... but, every time we ask him are you ok? he always told us he’s fine ...... sigh .....

Thank you again for hearing me! 

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Reply by eKIM
24 Jun 2013, 2:56 AM

Hello Juju. 

Firstly, I am saddened to hear about your mother.  Secondly, I have to commend you on being such a devoted daughter.  Being the father of two grown daughters, my heart goes out to you in another way.  I have seen situations where the effects of stress have negatively impacted on their lives.  This is a bad situation, for two reasons:


    • In the case of our younger daughter, we believe that prolonged, severe stress suppressed her immune system to such a degree, that she became very ill.  There can be no proof of course, but every single family member, including my daughter believes this to be true.  So Juju, don’t let this happen to you.  Find a way to lower your stress.  Take care of yourself.

    • Secondly, Juju, if you do succumb to “burnout”, then you will not be of any help to your Mom, in fact, you might make it worse for her if she then worries about you.

I have volunteered at our local hospice for 3 years now, and to witness family dynamics break down in such a stressful way is all too common.  Every person and situation is different, so of course every attempt at a resolution is different.  I am not in a position to offer any solution, of course because I am not qualified to do so.

 What I can suggest, however is to
 

    • Get some advice by clicking the tab on Virtual Hospice that says, “Ask A Professional”.  Copy and paste your posting to that place and you will get an answer from an expert.

    • Also, as Pudding and Brayden said, make sure that you approach the social worker at your hospice.  At our hospice, the social worker does a great job of finding solutions through family mediation.

I wish you the very best, Juju.  Please keep us posted on your progress in this very difficult situation.  You will always find a kind word here at Virtual Hospice.  I hope that you find some comfort in the following quote:

 “Some days you will be the light for others, and some days you will need some light from them.  As long as there is light, there is hope, and there is a way.”  - Jennifer Gayle

-eKim

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Reply by Vanjuju
24 Jun 2013, 3:13 AM

Dear cocopham,


Your message almost make me cry ..... I am so happy to be here and have someone understand our situation ....


I don’t know if mom’s feeling insecure or not ..... actually she like her nurses very much, but she just doesn’t want to “bother” them. She said she’s more comfortable asking us to do things for her. But, we prefer to “visit” her and have some lovely family conversation all together, not taking shifts like now and everyone’s busy around doing those routines ...... 


We don’t have any relatives in Asia.... My dad’s a single child, mom has a sister but she’s busy taking care of her own family. That’s why I have to quit my job and put down my life in Asia, we are really a very small family without lots of manpower .....


Mom’s in “cold war” with my brother and me these days, cause she think we are the worst children in the world who wants to “abandon” her to nurses and only care about our own life. Dad, of course with mom, is keep blaming us at home. But my brother and I was just try to reason with mom, that if she’s doing pretty good right now, maybe she can spare sometime to think about us, think about dad, see how we can all survive happily in this hard time ..... we love our mom very very much, but sometimes we feel she just forget about us ......


I feel I am going to explore now with mom refuse to talk to us ......

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Reply by Vanjuju
24 Jun 2013, 3:25 AM

Correct: Explode!! 

sorry ..... 
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Reply by Vanjuju
24 Jun 2013, 7:04 AM

Thank you so much, eKIM, I feel more reliefed today, and got lots of strength from all the replies. And I love your quote!


I just wrote an email to one lady from hospice’s palliative team, she’s now a friend to my mom and my family, I wish she will reply my email soon and let me know what to do next, maybe she can help arrange a meeting for us with social worker.


We will have another family meeting with palliative team on Wednesday, we think maybe they are trying to ask mom again if she wants to go home or move to other facilities..... I don’t really know the rules here, but is that ok for mom to stay in hospice as long as she wants? 

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Reply by eKIM
24 Jun 2013, 12:20 PM

Hello Vanjuju


 At our hospice, and I think like other hospices, the people are admitted who are expected to live less than 3 months.  The hospice is designed as a short term facility.  Nursing homes, on the other hand are long term facilities.  This criteria works well because there far too few hospices there are long waiting lists.


 Some people's health improves or stabilizes when they enter hospice.  After the 3 month period it creates a difficult situation - it happens at our hospice.  Everyone gets to know the person and cares a lot for them.  Seeing them go back home, or to a nursing home is very difficult for the staff and volunteers.  But to be true to the mandate of the hospice and to be fair to the people on the waiting lists, we must follow the procedures.  Keep in mind, when the person's health deteriorates further, they can be re-admitted to the hospice.  I'm sorry that I can't offer a better explanation.


 - eKim

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