Photo: A clean sink. Flickr, Creative Commons. Slash mark superimposed on photo.
Many years ago, when my father was working his way through psychiatric diagnoses, my mother-in-law, whom I’ll call “J,” said, “If I ever get like that, take me out back and shoot me.”
She was kidding, of course, but not really. And now the time has come when she’s no longer making fully rational decisions. Yet the situation is confusing.
“J” is 86 years old. She was a 2-pack-a-day smoker, since her mid-twenties, until a mild heart attack scared her a few years ago and she finally quit. But the damage had been done. COPD. Heart failure. Spinal stenosis. Atherosclerosis. Peripheral vascular disease. Hypertension. Most of the conditions are controllable with meds, and when asked at medical exams about her illnesses, she claims not to have any. About a year ago she started oxygen supplementation at night. Soon she was reading again, aware of the news, and the repetitions of the stories about how bratty my husband was as a boy noticeably declined.
Now she needs oxygen 24/7. I’d been saying this for many months, being the person who schleps her to most medical appointments. I’d have to ask the cardiologist to check her oxygen saturation – he a competent doc and seemingly nice man who nonetheless harbors an ill-disguised attitude that someone with 2 X chromosomes (me) couldn’t possibly know anything. Her pulse ox would be ok after taking a few steps in the hallway after having sat in the waiting room for 30 minutes. But lately I’ve noticed she can’t go 4 steps without becoming completely winded.
In recent weeks, as the exhaustion and muscle pain worsened, I tried contacting her primary care physician several times, and was ignored. I had to actually go to the doctor’s office to read the echocardiogram myself because the nurse could not interpret it. Well, last week, the PCP finally examined J at the assisted living facility and called me, alarmed. She related everything I’d been trying to tell her for years.
J has selective hearing in a medical setting. She goes to a doctor’s appointment with a set phrase – “I’m in good health,” for example – and manipulates the conversation until the doc utters something that seems to agree. At her first appointment with a nephrologist about 18 months ago, however, the young doctor would not be cowed. He explained half a dozen ways that she was in kidney failure. But back at assisted living, she announced to the gang, “The doc gave me a clean bill of health!”
And so a few days ago, after the PCP’s found a pulse ox of 88 and ordered assisted bathing at least thrice weekly (I’ll get to that in a minute), we stopped in for a visit. When my husband brought up the oxygen issue, J went crazy.
“They decided it was a mistake, I don’t need it.”
Who is ‘they?’
“The nurse.”
I doubted that the nurse at the assisted living facility was going to counter a doctor’s order for oxygen. But that’s the least of the problems.
J may die of being dirty.
When the choking haze of cigarette smoke receded in the aftermath of the heart attack that forced the quitting, when J was still living alone, a distinctive odor emerged. She wasn’t washing. Or wiping. Today her unit at the assisted living facility smells like a large mammal died and decayed in her living room. Recurrent fungal infections ravage the folds of flesh that she can’t reach. People have commented on the pervasive smell since she arrived two years ago, but nothing was ever done, I think because she is in financial control. Last week the PCP, after instructing us to insist on assisted bathing since we pay the bills, was shocked to learn this was not the case.
If J does not go on constant supplemental oxygen and get herself cleaned up on a regular basis to control the fungal and other infections, the PCP told me, she wouldn’t last a year. She didn’t mean last a year until she was moved to a nursing home. She meant last a year, period.
Like the healthy kidney conclusion, J denies both problems. Her inability to smell her own stink is yet another consequence of long-term smoking, her respiratory cilia having long since vanished. And the lack of oxygen may be impairing her thinking. If J is refusing the round-the-clock oxygen, she will certainly refuse someone cleaning the extended microbiome from her various nooks and crannies on a regular basis, which she will have to pay for.
So what do we do?
When my father was close to death from paranoid depression, my sister and I, not being truly informed, refused electroconvulsive treatment. An ethics committee at the medical center intervened and overruled us – and it gave him two more years. Can a PCP do the insisting for us in the present situation?
I’d support J’s decision to forego something horribly invasive or painful – chemo, coronary bypass, or dialysis. But supplemental oxygen and bathing? I understand that these interventions represent a loss of control, and perhaps an acknowledgment that she has been in deep denial of medical matters. But if we do not, somehow, insist, in an attempt to honor her autonomy, she may die of too much dirt and too little oxygen.
Advice welcome!
This post was written by an anonymous contributor to PatientPOV.org.
OK Laura. Now I’ve read it. Some day if we meet in person perhaps we can discuss the topic in some depth. But not here.
And… At least so far, the geezer in the mirror is still chugging along Ok…. in his own opinion, of course!
I currently don’t have to deal with this problem but I know caregivers who do/have dealt with the bathing issue. Overall the issues sound very familiar to what other caregivers deal with (refuse to admit that there is a problem, insist that medical person said there is no problem, refusal to bath, refusal to take medication). Do not expect to be able to reason with her, this will frustrate you and her.
So there are two big problems, her refusal to take supplemental oxygen and refusal to bath. Unfortunately both are probably rooted in cognitive problems. She can’t see that she needs the oxygen or the bathing, that part of the brain is probably just not working.
The oxygen seems more important. If you can get her to use it the bathing may be easier to handle. But I remember when my father was on oxygen when in the hospital and he found it uncomfortable, very dry. But I don’t have any advice on this front.
There are no silver bullets for the bathing but there are a few things to try. And some approaches might work one day but not another.
1) Cold might be an issue. Not only does the bath water need to be warm but the bathroom needs to be warmed up before she enters it.
2) Her skin may be very sensitive. Some people with dementia find showers to be painful. So a bath is the best approach.
3) Have someone she likes assist her. Some caregivers take a bath/shower with the person but usually that is in the case of the spouse being a caregiver. Changing people who bath her every time will probably not help.
3) Bribe her. Promise to do an activity that she likes if she takes a bath.
4) Insist on it and have her taken to the bath. Some people are more pliable than others. Doesn’t sound like this will work in her case.
5) Can it be made into a game? Can she be distracted by some other activity while someone baths her?
Reading my list I’m not optimistic. But surely the ALF has residents with similar issues, they should have some experience with it and not just refuse to bath her.
Difficult situation, reminds me of my own mother, also 86, long-term smoking, now with COPD and emphysema as well as other illnesses. She had persisted in removing the oxygen cannula because it “bothered” her. Repeated UTIs from lack of regular bathing. The only solution, alas, was to take the choice out of her hands. First she lived with me for a year and I insisted on twice-weekly showers from an aide or from me – no choice. Now in a nursing home she is not given any choice. Alas, it might be necessary to remove this bit of autonomy in order to safeguard her health. Your mom’s cognitive dysfunction, in tandem with her difficulty with bathing, almost force you to take the issue out of her hands. Find an aide she enjoys talking with and let that be the carrot. Maybe even take her somewhere on the days that she has a shower.
Situations where a person who is still somewhat herself and is insisting upon something that is personally destructive and obnoxious to neighbors are very difficult, and there never is really a “secret method” that makes it work – just a lot of trial of options and sorthing out what works. Almost certainly, the elderly woman here will test to have substantial cognitive deficits, but that testing should be done (probably by her primary care physician) so that all are more confident. It is sometimes the case that assessing memory will help all to understand how much she will remember of any struggle, though you can also guage that by seeing how much she remembers of important things happening earlier in the day or yesterday. You’ll also need to assess the best way to carry out a bath without her accord – some suggestions are already in the comments. Realize that a bedbath or a hot tub may be among the options. Eventually, you really do have to find a way to “lay down the law” and make it non-debatable. To get there, you may actually have to do a legal guardianship and take control of assets and decisions, or the ALF may need to threaten or actually discharge her (she may really be getting beyond their capabilities). It is important to keep everyone on the same set of goals – to do right by the “patient” here. The question is how to do that. No one, and especially not the “patient,” is an enemy or not part of the team.
If using oxygen for a few hours helps her thinking, then it could be very important. But if you see no improvement or only a constant struggle about it, then it is a “useful measure to slow the rate of decline, which is no longer worth pursuing.” You might, of course, try a mask or a hood if part of the problem is that the nasal cannulae are annoying.
You might try a hospice or palliative care consultation – these are usually available without hospice enrollment (though she may qualify for that, and the hospice team might provide some critical supplementation of services).
You certainly want to be sure that her primary care physician is willing and able to provide sedation if she has severe shortness of breath (from COPD) as she comes near death. Finding out at the time of need that the doctor is unfamiliar and unwilling is most unfortunate, since dying with a struggle to breathe has to be one of the toughest ways to die. There is some useful help in our book, Handbook for Mortals, as to dying with COPD. We probably needed to say more about very difficult behavior problems!
Staying with the issues and being loyal to her true interests is the family’s task, and it will be difficult. Think a minute about where the family carers can get support and help – your friends, other family, your religious leaders, the hospice or palliative care team, etc. In difficult times, it helps a lot to have a shoulder to cry on, and a helper to lean on. Speaking of helpers – experienced aides are often remarkably skilled at getting folks to take baths – see if someone in your environment has a lot of skill and is willing to undertake the task. We all wish you an easier path, in part because all of us are at risk of being in similar positions over time.
Thanks Deek and Paul for the advice. I’m Ricki, Laura’s pal, and I wrote the post. I’ve done some googling and I do think the underlying issue is cognition — inability to notice a problem, and perhaps inability to do something that requires forethought and executing a sequence of steps. My mother-in-law does have someone nice to bathe her regularly, but after the initial 2 weeks of daily bathing “ordered” by the PCP, she is back to insisting there isn’t a problem. We were just there and tried to engage her in conversation that requires thinking — about a book, a film, current events. And she could not frame any answers. So I agree, trying to reason with her is not going to work. My husband is now insisting on things, and we’ll see how far that gets us. Thanks again, I suspect this is a common problem.
Impressive array of responses. The idea of a selected staff person to be assigned, and probably tipped, seems promising. Perhaps the threat of discharge to a nursing home with another person in the same room might press her to accept the daily bath, as well as some minimum period of oxygen.
Look forward to learning more about this management
While I agree with Joan’s comments on the need for cognitive testing, I disagree on it being done by her PCP, except if he works in geriatrics. The best cognitive testing is neuropsych exam which can take 4 to 8 hours, so you want to consider putting someone through it. The MMSE might take only 10 minutes but is not designed for dementia dx and can be very misleading (my wife has FTD yet scored a perfect score last year). Based on experience of other caregivers many doctors are not familiar with dementia, especially non-Alz dementias.
There comes a time when a parent’s health and mental status has deteriorated to the point that it’s the adult child’s responsibility to become their “shepherd”. I did this with both parents. They resisted continuously — but I knew I was acting not only in their best interest, but was deliberately carrying out what their wishes were. My mother would have died on the spot if she knew she smelled. Getting her to the shower a few times a week was a challenge for the caregiver, but she was creative and got her in and out. It simply was not an option. The grey zone when they are cognitive enough to resist but unhealthy enough that it matters is a very tough zone for adult children. You’ve got to move past it and do the right thing. Then decompress with close friends and drink great wine. Carry kleenix for crying. Best of luck, it is not an easy journey, but a worthwhile one.