Medical Dopers: How long can a senior with dementia live without sufficient hydration?

In My Humble Opinion
1

My wife and I have been taking care of my mother-in-law, 87, for nearly three years. Two years ago she collapsed and was taken to the hospital, where we were told she was dehydrated. Since then we have been very careful to make sure she got enough fluids every day, which has become more and more difficult, because she also has dysphagia, which makes swallowing hard.

She has become weaker over time, and after a recent stay in the hospital because of a UTI, we have placed her in the local nursing home, because in her weakened state it wasn’t safe to keep her at home. At the same time, her PCP pointed out to us that the MOLST (aka File of Life) she signed with the PCP in 2016, before the onset of the dementia, in addition to Do Not Resuscitate orders, stated that she didn’t want artificial nutrition and only wanted short-term artificial hydration.

We have asked her PCP and another doctor about regular IV hydration, but both said it is not recommended because of the risk of infection, the problems with finding veins in someone of her age, and the fact that she is on a blood thinner.

At the nursing home no one will be constantly pushing her to keep drinking, or getting other fluids into her, as we have been for the last two years. It will be up to her to drink when she feels thirsty. Which is something that patients with dementia, to say nothing of dysphagia, often do not do.

We had determined with her PCP that about 30 oz per day was an acceptable level of intake. Although it’s only her second full day there, I’m guessing that she will be getting no more than half that, perhaps less.

I’m meeting with the nursing staff today to discuss what their procedures are if she collapses again: if she goes back to the hospital and they give her IV fluids and discharge her, it’s just going to start a cycle that could repeat many times. We don’t think we want that.

My wife and her brother have come to accept that this is probably how she will die, and that, based on her decisions in 2016, it is what she wanted.

What we don’t know is how long the process can take, and what it will look like on the way. Any informed comments and advice would be welcome.

Thanks.

2

It sounds like she may well be ready for hospice care, since her wishes exclude chronic artificial hydration/nutrition (which is a perfectly appropriate decision on her part). Hospice programs are used to dealing with the sort of situation you describe and will use comfort meds and measures for her rather than IVs and trips to the hospital. Hospice staff is usually also quite good at attending to the patient and encouraging fluid intake as long as the patient can benefit from it. Is that a viable option for her?

Otherwise the process of dehydration in an individual who can only ingest small amounts of liquid may take days to weeks. I’ve seen this occur many times in my career and it can be pretty stressful for some patients, family, and staff.

3

2nd this opinion. Talk to the facility staff. They should be able to discuss the options of hospice care even within that facility.

4

If you have been entrusted with the authority to make medical decisions for her, then I think your obligation is to understand and pursue (to the best of your knowledge) what she wants rather than what you want. However, in the present situation her goals and yours might be the same, i.e. to not prolong suffering when the end is inevitable.

This. The time to death depends on what sort of condition they were in when you start the clock, and how much hydration they’re still getting after the clock starts. When my dad completely stopped taking food and water, he was already somewhat dehydrated; he died four days later.

There’s a YouTube channel, “Hospice Nurse Julie,” in which a nurse describes a lot of what to expect when someone in hospice care is in the final days/hours/minutes of their life. OP might find some of these videos to be informative/educational (and hopefully a little bit helpful).

5

Patients with dysphagia can sometimes benefit from water thickeners which make swallowing easier. If she’s resisting drinking because she chokes on the water, that might help. Ask the nursing staff.

6

FWIW, my brother-in-law, who had dementia, lasted three weeks without water. We were amazed and wondered if someone on the hospital staff was giving him water, but he was incapable of swallowing, and his living will stated no IV’s. He showed no signs of being in distress and died peacefully.

7

Thanks all, for the helpful info and advice. Fortunately, I read @Qadgop_the_Mercotan and @Omar_Little’s replies before going into a meeting with the home’s social services director, and was able to ask about hospice and get more info on several other related topics.

The good news is that they will be tracking her hydration (and other things) through routine blood tests and monitoring her intake, and can administer additional hydration (IV, if necessary) if the levels drop. She won’t have to go to the hospital. Contrary to our previous assumptions, they are not just going to let her drink what she wants and slowly wither away.

The reason we thought that was a possibility was that recently it could literally take a couple of hours of encouraging her to drink just to get the daily 30 oz into her. We assumed that no one at the home could spend that much time.

It also turns out that the facility can do hospice care in-house, so if that becomes necessary, we won’t have to look further afield.

We are definitely trying to follow her wishes, and although we knew about her DNR in the case of major issues, we hadn’t recalled that she she didn’t want dialysis or artificial nutrition, and only short-term hydration. Her PCP pointed that out to us. So by pushing fluids on her for the past two years, there’ a sense in which we may not have been following the spirit of her wishes. But although it was time-consuming and tedious, she was otherwise healthy and strong enough that doing otherwise was unthinkable.

But she also has heart issues, and her cardiologist said about four years ago that she probably had two to four years left. So the general weakening that we have been expecting has now reached a point where keeping her at home, where she has to climb stairs to get from her bedroom (on the lower level) to the living room and dining room, is no longer safe for her or us.

Thanks. The staff at the hospital told us about that in the first visit two years ago. And believe me, we’ve tried it, and practically every other option under the sun, all with mixed success. For quite some time she drank coffee every morning, and thickener in that sometimes worked, sometimes didn’t. Then she decided she didn’t like coffee any more. We gave her a mix of many other options – Jello, watermelon, yogurt, applesauce, etc., etc. – each of which she ate happily until one day she decided she didn’t like it. Switch to the next thing, rinse, repeat.

Then last week, she was refusing almost everything, and was so weak we had to call the ambulance. It was only then the hospital found out about the UTI, which had probably been exacerbating her condition.

However, we are very angry that the hospital kicked her out after two days, because if they had kept her one more day, as we wanted them to, she would have qualified for up to 100 days of nursing care under Medicare. (The case manager lied to me about that, or I would have tried to persuade the doctor.) As a result, my MIL has to pay room and board at the nursing home (>$400/day) herself. The problem is, what happens if/when she runs out of money? She won’t qualify for Medicaid, because she has given her children gifts over the $10,000 limit in the past five years. Fortunately, she put the house we’re living in into a trust for my wife and her brother more than ten years ago. So we won’t lose that.

But we are impressed with the levels of skill, care, and professionalism at the nursing home, which is one of the top rated in Massachusetts. It’s only a couple of minutes from our home, so I can easily visit, even walk there, most days, and my wife can stop in on her way home from work. It’s also where my MIL always said she wanted to go, if she had to be in a nursing home .

Thanks again to everyone who took the time to reply. I’m pleased to say that things don’t look quite as grim as they did when I wrote the OP just a few hours ago.

8

I am glad you found a way forward, after discussing things with caregivers. It sounds like a good place to proceed from.

I will ask what in particular keeps MIL from being in hospice care now. Hospice care isn’t time limited, though generally people who enter hospice care are expected to die within 6 months. But that’s not a hard and fast rule at all. Jimmy Carter’s been in such care for well over a year now.

Many hospice settings do discourage invasive procedures such as blood draws and IVs unless they’re the best means of delivering comfort care. You can certainly raise this issue with caregivers if you care to. Meanwhile, kudos for asking good questions about all this, and moving things forward according to MIL’s best interests and stated wishes.

9

Sorry you’re going through this. I am, too, as are so many.

I strongly recommend getting her in hospice care immediately. In our state (not sure if it’s the case everywhere, but probably), hospice means, especially for a person in a nursing home or other facility, all the palliative care and medical attention to keep her comfortable, and includes (at no extra charge to you), a dedicated nurse, doctor, and extra aide.

The aide comes to the facility (in our case, for four hours a day, five days a week), and provides extra care and attention specifically for that one person. The staff at the facility will have a lot of people they are responsible for, but this hospice aide will be dedicated only to your loved one.

It’s been a godsend for us. She is just helps with everything–feeding, bathing, bathroom–and is in touch directly with the hospice nurse and doctor if anything comes up. And she texts us with updates all the time she’s there and can answer questions.

Hospice means extra care. And that’s a great thing to have. It doesn’t mean death is necessarily imminent (expected within six month, but it’s been over a year for us. They just reevaluate every few months, and if the decline is ongoing, you still get hospice). Even in a fantastic facility, having some extra resources is just an amazing advantage.

10

Thanks for this additional information. I will share it with my wife and brother-in-law and discuss it with the nursing home staff.