It's Already Gone On Long Enough

[Ruby Vee]

My mother-in-law had a stroke last week. Details are sketchy -- she's several hundred miles away and the daughter who lives closest, a mammography technician, knows just enough to tantalize my husband and me with some of the medical details, but not enough for us to get the full picture. She had either a right CVA or a left -- Rosita isn't sure -- and has either left hemiparesis or left -- again, Rosita isn't clear. What is clear is that she had a diminished level of consciousness and wasn't able to swallow.

Did we think she should give permission for a feeding tube?

Mamita is 89 years old. She's been institutionalized with dementia for nine years. No matter what we do or don't do, she isn't going to get better, her dementia continues to progress, and she hates living in the nursing home. When she first went there, she wore an ankle monitor because she kept trying to leave. She was in the memory care unit because Hurricane Katrina and the disaster that was New Orleans snatched away what remained of her clarity and functionality, then the Sheriff's department put her on a commercial flight and sent her off to live with her daughter in New England.

What else were they going to do with her?

She couldn't be left alone because she'd immediately try to go back to her house -- under water at the time. And letting her wander among people wasn't safe -- she tended to attack anyone who annoyed her. Mamita was always easily annoyed.

Nine years in a place she hated, and my first thought was that the stroke might offer her a way out.

If you ask anyone whether they'd like to die with dignity, or whether they'd like to be kept alive on machines even if there's no hope of recovery, no one opts for the machines. At least, they don't if you give them some clear idea of what you're asking and ask them before they get to the point of being awake, afraid to die and facing the point where the only hope of keeping them alive IS the machines.

Why, then, do we even offer the feeding tube to the family of an 89 year old patient institutionalized with dementia for nearly a decade and without any hope of recovering?

I'm not sure how serious the stroke turned out to be -- she has hemiparesis. Even if there was a chance of recovering from the stroke, she won't recover from the dementia, and the dementia makes it all but impossible for her to recover from the stroke.

How do you get her to do the exercises that will strengthen her, how do you teach her how to use a spoon or dress herself or use the toilet with one hand?

The stroke took away, and the dementia makes it impossible to get it back.

Mamita got the feeding tube. Her middle daughter, the one who lives farthest away and has always wanted the least to do with her insisted that she couldn't live the rest of her life knowing that "Mamma starved to death."

Why is it always the ones who live farthest away, who have the least to do with the patient while they are able to interact and who know the least about the situation who always draw the line in the sand and insist upon "doing everything"?

Why is it that they don't listen to the son who knows?

This isn't "doing everything." It's just prolonging her death.

It's already gone on long enough.

[mc3, ASN, RN]

Ruby, ((((hugs))))

mc3

[Ruas61, BSN, RN]

Prayers for you all, Ruby, to find the way.

[txredheadnurse, BSN, RN]

Whenever I read a posting like this one I am eternally grateful that I was an only child and didn't have to contend with siblings who wanted to not follow my parents wishes or were convinced that there would be some kind of miracle recovery.

My parents were very frank from my childhood on about their wishes and opinions regarding dealing with a terminal illness....comfort, maintain as much dignity as possible, die at home. I was able to ensure that exactly those things happened without futile care or making their final days a misery.

I am so sorry that you Ruby and your DH are having to deal with this final insult to your mother in law. Please know you have the support of your colleagues here on AN and our wishes for a peaceful ending for Mamita.

[imintrouble, BSN, RN]

I used to think if nurses could speak plainly to families about end of life care, they'd make more informed decisions. If we could, with compassion, point out the futility of G tube feedings, when their loved one no longer knows how to eat, they'd change their minds.

After years of watching people torture their loved ones, I've come to the conclusion nurses have little influence over someone determined to "do everything".

Eventually, I mean over the course of years, maybe decades, decisions regarding end of life care will change. If we as nurses keep plugging along in our attempt to educate the public.

I'm sorry for your sorrow, Ruby.

[Been there,done that, ASN, RN]

The closest family members are uneducated and selfish. I am sorry for what you are going through.

We can only hope Mamita is unaware of the fiasco... and finds peace soon.

[exp626]

My Dad passed away from failure to thrive. I was so happy that I didn't have to talk Mom into declining the feeding tube when offered. It was hard for us all, but I think it would have been much more difficult to prolong his life with a feeding tube.

My thoughts are with you, I hope she finds peace soon.

[toomuchbaloney]

I participated in a small family meeting for a hospice patient once in a situation where the daughter/caregiver wanted her mother with advanced dementia to have all sort of interventions including CPR should she code. The patient's disease was so advanced that she met the hospice criteria for dementia easily.

When the daughter talked about doing this or that for her Mom the nurse asked her if doing those things was going to give HER (the daughter) peace of mind or help her to feel better about her mother's poor health. The daughter gave some reply about taking care of Mom and the nurse stated very directly that none of those things the daughter mentioned were going to cure her mother, improve her symptom burden, or improve her quality of life. She went on to point out that those things would be done ONLY to treat the daughter's anxiety about her mother's declining health and inevitable death and that some of them might actually prolong any suffering.

I watched as the daughter was at first very angry and then indignant and then ended the meeting. A few days later the patient was a DNR and the daughter was VERY thankful for the opportunity to change her perspective by being told the truth by a health professional. Her mother had a peaceful death in their home weeks later.

That nurse was a risk taker in her patient advocacy.

[la_chica_suerte85, BSN, RN]

It's so hard when you have the bare facts about the situation and what the consequences of invasive procedures like a feeding tube would be. You have the knowledge of reality, they have the knowledge of the pain they would feel if they stopped trying. You have the knowledge of how pts w/ dementia get to the point of not even remembering to eat and how a feeding tube delays the inevitable as well as introducing risk for infection and other serious complications. It's so hard. It's hard to not want to shake people who think they would be starving their loved one to death when you know that it's probably more inhumane to request life prolonging measures.

I feel for you. You're right -- how long should your mother continue with this impossibly low level of quality of life? How can you not inject emotions into this? You have the education and emotions, they don't -- they just have the emotions. Both things are heavy burdens to bear. It will eventually come to a conclusion. That's one thing that is for sure. How, when, where, what? Those things are left to fate. But, one day your mom will get to go to glory, as it were, and you will have peace knowing it's done. Remember the best of her life and honor her with that especially because it sounds like she had more than her fair share of the worst of it. ::hugs::

[Raviepoo]

I am so sorry that this happened. All you can do at this point is hope for the best possible outcome. It sucks. Hopefully it will be resolved quickly and your mother won't suffer.

If either of my sisters ever tried this %$#@ I would take them to court. They know it. We have talked about it. Thankfully they are both willing to let the sibling who works in LTC make the decisions when the time comes.

[babaloo8]

This is a very important and personal topic to bring up Ruby Vee. Many of us will be facing these same challenges with our parents/grandparents/loved ones and as you illustrate, the decisions can be difficult. As a country trying to contain healthcare costs, we must grapple with the question of 'how much is enough?'. Where do we draw the line on expensive end of life care?

Thank you for sharing your story

[caliotter3]

Yet another story of how the family members have trouble agreeing on a course of action with an elderly family member. Happened in my family. Has happened in other branches of the family. Needless suffering for all involved. I've made it clear that I want to be treated with the proverbial "pillow" when the time comes. And everyone knows I'm dead serious about this.

[TheGooch]

Yeah, I just love those family members like your sister in law.

When my Mom was alive her other never saw her. The reaction to being told she had Alzheimer's was mixed. One wanted to make up for the lost time. She was always the bossy and self centered one though. We live in Colorado and she wanted us to uproot Mom and move her to California so HER family could be close to her. No mention of what my Dad and I were supposed to do. I told her no and explained how NH and medicaid worked. Thirty five years ans no contact period and she wanted to move her from an environment that she was familiar with just so HER family could get to know her:sarcastic:

The other equally self centered one got mad at the above mentioned one because she decided to become involved in what was happening.