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Palliative Mother in Denial refuses home care 
Started by drezzlet
12 Nov 2013, 4:05 PM

My mother is at the end of a year long battle with pancreatic cancer. She still lives at home and is increasingly becoming more sick. She gets fluid drained off of her abdomen weekly, sometimes twice a week and her legs are full of fluid as well. My sister and I do not live near her and most of her care has been done by her sisters and brothers(there are many of them). However, some of them are being selfish and just showing up and not helping at all and just getting her overwhelmed. She needs to rest but barely has time because of all of the visitors. She doesn't want to offend any family members by asking them to stay away. I wish I could be out there for crowd control but I have a 4 month old baby and my sister is 11 hours away. She is also burning out the family who does help with housework and personal care. She is very demanding and downright mean at times. Mostly I think it is because she is losing her independance to do what she could before they way she wants it done(a bit of a control freak). Her oncologist hasn't been the most clear with her about her diagnosis. He told her that there are no other treatment options but she feels she will get healthy enough to go back on treatments some day. He mentioned palliative care but she immediately shut him down saying she wasn't at that stage yet. I know she needs help at home in the mornings and with showering. Those are the times family cannot come by. She may agree to it, but the only way we can afford to do it is through the local palliative care community program. I guess what I am getting at is how do we go about getting her care if she believes she isn't palliative? We do not want to dampen her spirits but she really needs this help. Thank you!
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Reply by JennJilks
12 Nov 2013, 9:00 PM

If your mom is in Canada, there is no qualifying for or difference between homce care and palliative care.
Staff should be determining her needs. Palliative care community programs should be managing a life limiting illness, and usually don't differentiate between palliative or not.

Your oncolgist needs to step up. This is criminal. You can document it and contact the College of Physicians. I did for my father. It helped other families, I know.

I totally understand your mom's behaviour. I totally understand your reaction.
Frustrating, isn't it?
There is grace in accepting assistance. SOme never accept this. It took my mom a month, after I moved to care for her. I quit my job, found another. She died 6 weeks after I moved to care for her.
You cannot live her life for her.
You cannot take control if she won't accept the help that is offered, possible and available.
I'm so sad for you. You will get through it, however, stronger than before.

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Reply by drezzlet
13 Nov 2013, 1:13 AM

Thank you for the response. It's nice to hear from someone who has been there. 
My health care authority here in Newfoundland has home support programs and palliative care programs and they are seperate. There are private home support companies that do not differentiate between palliative and general care, but we cannot afford that.
As for her oncologist, we actually really like him and we feel he exhausted all efforts of treatment with my mother. However, the mix of him having a polite bedside manner and my mother's lack of education has resulted in her not understanding that there is nothing else they can do for her. She sees it as there is nothing else they can do for her right now, but in the future there may be. I don't want to squash her spirits as she's pretty positive about getting better. But at what point do you help them face to truth so they get the care they need? It's a tough decision.  
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Reply by moderator | modératrice
13 Nov 2013, 1:59 AM

Hi drezzlet,

Welcome to Virtual Hospice.

Tough decision indeed. I wonder if you might like to consult our team of experts on Ask a Professional about balancing the oncologist's bedside manner, denial and reality in a way that would bring acceptance and peace? Our spiritual care advisors are particularly good at helping people find words and approaches to help for such situations. 

Pooka posted this message a while back Somebody help me! Too many people in the house. While her situation is not yours, I thought you might gain some insight from the conversation.

Folks, we have heard this before about visitors being too much and not helping, etc. What advice might you suggest to drezzlet who can't be there to crowd control?

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Reply by Razz
18 Nov 2013, 4:42 AM

Ah yes, the Newfoundland hospitality....it's well known characteristic of the wonderful people who live in the Maritimes.  But it's not so great when all the "visitors" are just making more work.  Who are these people and do they know the truth about your mother's condition.  I'd venture to guess that she tells them she's just fine and probably doesn't want them to "fuss" either.  I would suggest that if you know who these people are to call them and tell them the truth..... that in fact your mother is very ill and by rights should be in bed resting.  Thank them of coarse for their concern and their desire to make her feel better but what she really needs right now is "in house" help - not extra work.  If you know even one of them it would be fair for you to call and also ask them if they know of others who are visiting so you can pass the word along to them.  Let them know that she is in fact dying as everything that could be done has been done and now it's a matter of time.  

Does she attend a church?  There is also a good place to get some help for your Mom to relieve those doing all the caretaking.  A call to the pastor explaining the situation may also help in discouraging those who just drop by for a "visit".  The pastor would be one person who would be familiar with the people of the community.  

If she didn't attend a church is there any other organization she was part of.  Depending on what it was you may be able to enlist there help for your Mom.  

I would also encourage a "sit down" with your Mom, her doctor and the family members who are there and gently but firmly explain to her the reality of the situation.  She does not have live out her final time wearing herself out but should be spending it as comfortable as possible and with the help that willing and able to assist her.  Tell her that she's worked hard all of her life and that now she has earned the right to be pampered.  That she deserves the extra treatment for all those times when she spent caring for her family.  Let her know that by accepting the home care she will not be admitting defeat but instead is showing her strength by being "big enough" to know when to ask for help.  That it takes great courage to ask for help not weakness.  

In the end you may not be successful but you can at least feel at peace knowing you did everything you could and that the bottom line is her choice.  Unless of coarse you suspect that she may have dementia and is no longer competent to take care of herself.  Then there are legal steps you can take so that the responsibility for her care passes to someone else.  

Wishing you all the best in this .... I know how hard it is when you're up against someone in denial.  Remember too however that she also deserves the right to have her wishes respected - no matter what the cost to her.  

be good to you  - Razz  
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Reply by drezzlet
18 Nov 2013, 11:06 PM

Thank you for your replys. Things have gotten a little better. Well, I should say i've come to peace with some things. My mother is only 58. I realize she is losing her independence very quickly and this is very hard for her. She is her own enemy in that she gets overwhelmed when people are there but would complain if nobody came to visit. Razz, seems you are familiar with NL way of life. Rural NL is especially known for caregiving and helping in whatever way they can. Sometimes this borders on pure nosiness and results in people over stepping their boundries. She is involved with a church and is well known to the congregation. However, I still do not think it is my, my sister's or any other relative's place to let her know she is dying. Her doctor needs to tell her this. But we are not able to call her doctor because we are not listed as next of kin. Her partner would never call and if he would, she is always around. I don't know when he would do it. I know this sounds like I am complaining. I do not wish to come across that way. I know my family, my hometown and my mother. This combination leads me to thin that either of those options would not be a good choice for her to figure out her palliative state. Sadly, my mother suspected we were going to call relatives and made us promise not to. We cannot very well call relatives to not visit when she specifically ordered us not to do just that. Once she realizes what's going on, I plan on contacting her pastor to go visit with her. Thank you so much for the responses everyone. 
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Reply by Razz
18 Nov 2013, 11:45 PM

drezzlet - 

Kinda in a hard place and a rock aren't you? Thinking some more about it however I'm wondering if part of her denial is to protect you and your siblings.  We parents are funny that way, we want to shield them for all unpleasantness and we sure don't want them to worry.  So in a way her denial is serving her in at least 2 ways.  One is that she is young and no one at that age wants to think of their mortality.  It's a pretty normal human reaction.  Remember as well we often only hear what we want to hear ... not what was actually said.  Was anyone with her when she had the conversation with her doctor where he said there was nothing more they can do for her?  If not then what information you're getting from her is what her perspective was on the conversation.  She may very well have blocked out any portion of it that had to do with her eventual decline in health leading to her passing.  The second benefit for her is that she doesn't have to go through all the "talks" and "dicussions" about her health and her dying with every Tom, Dick and Harry... and her children.  She is not yet ready to take that step in her journey.  

So then taking an attitude of I just need to get better so I can have more treatments save her from looking any deeper.  However, although this is my own personal view, Those patients who hang on dearly to their denial often know in their hearts the reality of the situation - the thinking for them is if I don't believe then it can't be true.  Unfortunately poor health eventually catches up with them and then they do have to face the reality of the situation.  

Now if I reading this correctly you have two concerns - 1.) too much company that's wearing her ot and 2.) a lot of pressure put on the caretakers she has.  How to get these concerns across to your mother in a way that she will "listen to reason" will be a challenge and I'm sorry you are in this difficult postition.  

First of all I think you could circumvent your mother's rule of not calling the relatives and telling them not to visit.  You could still call them and without going into specifics mention how worried you are about her health and that seems to be tired and worn out so often.  You can mention that you know she gets a lot of company and she sure doesn't want to turn them away but you're wishing that thee could be some way to encourage these visit to be less often and for shorter periods.  Mention that you know it would do her a world of good if she could have a time set aside each day just to rest.  Then ask that relative what they think you should do.  No doubt they'll have plenty to say.  

You didn't mention in post (or I totally missed it) what kinds of things that her "caretakers" are doing for her.  I have a mother who is almost 92 and I KNOW HOW difficult it is to be the caretaker even is what you're doing isn't that big a deal.  It's just the constant contact and concerns that wear you out.  This could be an area where the folks at the church to help such as driving her to doctor's appointments or picking up her groceries and taking turns being the "maid" for a day.  

Her caretakers on the other hand are going to have to learn about "boundaries".  It's so painfully hard to say NO to someone we love especially when they don't have much time left.  However if they could just step back a bit so they are not at her constant beck and call she's more likely to take help from others around her.  Setting boundaries such as "I can only pick up groceries for you on X day so be sure to have a list.  Dr. Appointment  - Could you possibly find someone else to take you this time.  I have so many things on the go right now it really would be a big help if you could. What about _______?  Of coarse she'll hate it but she'll get used to it.  The other important boundary is one where you set aside a specific time and day when you aren't available for her phones calls etc.  Such as "X" and "X" have decided that we really need to have a full day off on the weekends in order to do all the things we'd like to do.  So from now on unless it's a medical emergency we'll be screening all of our calls in an effort to keep that day for us.  Then comes the hard part - STICK TO IT.  This might also have the added bonus of her realizing just how much she "used" them and might prompt her to find others she can lean on at times.  

And here's a possible suggestion that way out in the out field that it may have no value to you.  Do you think that your Mom would agree to having "visiting hours"?  In other words would she be willing to put a sign on her door that says "Taking a much need nap.  Do not disturb until ______" .    I used to do that all the time when my girls were babies and it worked very well in keeping that block of time for one specific purpose - rest.  Then when we got up I'd take the sign down.  OH and at the same time I turned down the ringer on the phone so we couldn't hear it.  If anyone had something important to tell me they could leave a message.  That proved very helpful as well.  

OH gosh ..... I have rambled on here quite a bit I see.  The longer I'm on this forum the more everyone will get used to the fact that I can't be "brief" .... I can sometimes manage to shorten things a bit but I'm stil often left with a small "magazine article" - LOL.  

Take care and be sure to be good to you - Razz  
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Reply by moderator | modératrice
24 Nov 2013, 11:09 PM

Hi Drezzlet,

I just wanted to check in to see how you are doing. Any changes in your mom's situation? How about you? Any new attitudes or approaches in dealing with family and your mom?

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