When Is It Time to Take Over?

[dc30063077]

Hi,

My name is Donna, and I'm new here. I'm unofficially in charge of my 89 year old mother; I'm 63 myself.

Mom is very independent, stubborn and uncooperative. She has congestive heart failure, cancer and is almost blind due to macular degeneration, but she still lives alone in an apartment two floors up from mine. She's frequently, but now always, confused and her short-term memory is shot. She's overly nice and passive. She's never been good at making decisions. I take her to her doctors appointments, grocery shopping, and pick up her prescriptions. I've also started stain-treating her clothes because she's an enthusiastic but sloppy eater, and she misses most stains when she does her laundry.

I'm concerned about the way my mom deals with her doctors. She does what she does what they tell her to do, but she doesn't question. Getting her to call her doctor is like pulling teeth. Actually, I'd rather pull teeth -- my own. When I ask her why she doesn't call her doctors, she tells me that she doesn't want to bother them.That makes me nuts. She seems to expect them to take the initiative when it comes to taking care of her, and she seems to expect them to read her mind.

Her current health situation is a long story, and I'll spare everyone that long read. What concerns me right now is her stomach discomfort and sweating; both are symptoms of her untreated cancer. Yes, she has an oncologist, but she refuses to call him and tell him what's going on. I want her to call and ask for symptom relief. I've told her that I'm behind her whatever she decides to do, and that includes deciding to not treat her cancer, although she hasn't told me that. If she wants to treat her cancer, I'll help her with that too.

Because she refuses to call her doctors about anything, all I can do is listen to her piss and moan about her stomach discomfort and sweating. I've met all her doctors because I've accompanied her to all her medical appointments "as her memory". I do ask questions, but there's a lot that goes on outside the doctor's office that I don't know about, like telephone conversations with her healthcare team. I have no legal standing to step in and take a more active role in Mom's healthcare. I'm at a loss as to what I can do.

[JaneCares]

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@dc30063077wrote:

Hi,

My name is Donna, and I'm new here. I'm unofficially in charge of my 89 year old mother; I'm 63 myself.

Mom is very independent, stubborn and uncooperative. She has congestive heart failure, cancer and is almost blind due to macular degeneration, but she still lives alone in an apartment two floors up from mine. She's frequently, but now always, confused and her short-term memory is shot. She's overly nice and passive. She's never been good at making decisions. I take her to her doctors appointments, grocery shopping, and pick up her prescriptions. I've also started stain-treating her clothes because she's an enthusiastic but sloppy eater, and she misses most stains when she does her laundry.

I'm concerned about the way my mom deals with her doctors. She does what she does what they tell her to do, but she doesn't question. Getting her to call her doctor is like pulling teeth. Actually, I'd rather pull teeth -- my own. When I ask her why she doesn't call her doctors, she tells me that she doesn't want to bother them.That makes me nuts. She seems to expect them to take the initiative when it comes to taking care of her, and she seems to expect them to read her mind.

Her current health situation is a long story, and I'll spare everyone that long read. What concerns me right now is her stomach discomfort and sweating; both are symptoms of her untreated cancer. Yes, she has an oncologist, but she refuses to call him and tell him what's going on. I want her to call and ask for symptom relief. I've told her that I'm behind her whatever she decides to do, and that includes deciding to not treat her cancer, although she hasn't told me that. If she wants to treat her cancer, I'll help her with that too.

Because she refuses to call her doctors about anything, all I can do is listen to her piss and moan about her stomach discomfort and sweating. I've met all her doctors because I've accompanied her to all her medical appointments "as her memory". I do ask questions, but there's a lot that goes on outside the doctor's office that I don't know about, like telephone conversations with her healthcare team. I have no legal standing to step in and take a more active role in Mom's healthcare. I'm at a loss as to what I can do.

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Hi Donna,

You do have your hands full. 

A couple of questions for you and then a couple of ideas. You go to appointments but there are 'conversations with her health care team'?  Does she initiate those conversations? I thought she didn't call the doctor to avoid being a bother? Anyway, yes it is time to step up a little more. 

         And how you do this is key of course.

         In some states, next of kin can make medical decisions when a person can no longer make decisions. But whatever state you live in, you are doing a great job helping her do what she desires: you are respectfully following her lead. No need to get totally legal: she might get paranoid about your intentions. I think you could try a conversation and see how she reacts: "Mom, i'm a little worried that something might happen that would make you unable to tell your doctors what you want to do, and perhaps it would be a good idea to fill out one of those Five Wishes papers on what you want done. I want to make sure that nothing is done to you or for you without knowing that's what you want!' 

         Those are a lot of run on sentences, but you get the gist. 

         Another way to go, though, is to do some research on palliative care resources in your town or county. She seems like a perfect candidate for getting treatment that is directed at symptoms. You and she want her to be comfortable, regardless of the causes of her discomfort. And at 89, dealing gently with her ailments including cancer means she doesn't have to do chemo or surgery or radiation. But she does deserve aggressive symptom management.

       I used to be a hospice social worker. Can you tell?

       I'd do the research, and if i were you i'd also talk to her doctors about it. Who does she see most often? The oncologist? Does she have a general practitioner she likes? Does she trust any of them? I would approach her 'favorite' health care provider and perhaps send a fax and then follow up with a phone call. Before the next appointment with her/him, be prepared to know if home-based palliative care is possible. 

       People can be on home hospice for months and years, as long as they are declining (and Medicare is very specific about that 'decline'.)  And the support to you and your mother is wonderful: an aide a couple of days a week to help her with her bath, which she might refuse at first. A social worker and chaplain. And most importantly, a fabulous nurse who visits at least weekly, brings her her meds and coordinates her care so that she can stay at home. No bothering of doctors: the nurse reports weekly to the team and a physician is available for home visits once a quarter. 

      I wish everyone with any illness could have a team come to the home like that. 

      I hope this doesn't seem too drastic. It sounds like your mother has a wisdom about her: just go about her life, as independently as possible, and avoid fuss. With a palliative care program, especially hospice, she could continue on that path.

      I think it's great that you live below her and she can have her own space but you are close by.

      Please write back and tell me what you think. 

      Your mother is a lucky woman.

Jane