The Glade 4.0

A loved one has advanced Alzheimer's. He no longer recognizes his spouse on a regular basis. He was recently entered into a VA home. In the last 2 weeks since he was admitted he has lost 10 lbs and is refusing to eat more than a bite or two. He's convinced the staff is trying to kill him or that he's incarcerated for some crime he didn't commit.

He's repeatedly expressed a will to die. His medical power of attorney and living will are on file.

The VA wants to commit him to a Geriatric psychiatric bed which could involve a feeding tube.

Removing a feeding tube is far harder (legally) than not adding one.

Alzheimer's typically runs 10 years before becoming fatal. He was diagnosed 4 years ago, and had symptoms for 5 years before that, suggesting that we're right at about 9 years.


I'm not the one who has to make this decision, but now I'm being asked to advise. Strange as it may sound, I'd like to hear from all sides on this one.

Has the afflicted left any instructions regarding this situation?

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Get him out of that facility, now. If you want any hope at a reasonable quality of life or an acceptable level of palliative care, get him out of that facility, now. The rest of the situation is for the parties impacted to deal with; but your "loved one" is not far wrong about his perceptions.

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Do not allow a feeding tube to be put in.

It does not extend lifespan.


On the comment that Khross made: It would be best for your loved one if he could be at home in a familiar environment. If the people at the VA do not recognize what is happening to him, they are idiots. His confusion is a common one.

On the other hand, caregivers can get completely overwhelmed. One study showed that a caregiver's lifespan drops by 5 years. If there is no way for the caregiver to get respite, it can literally kill them.

So the best thing for your loved one is to be in a familiar environment with caregivers rotating in. This may not be practical however. Caregivers are not Superman/Superwoman and only have so much to give.

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Memento Vivere

I have local knowledge.
That sandbar was not there yesterday!

Quality of Life > Quantity of Life.

It really is as simple as that. From my perspective the family has a very clear and obvious but very difficult decision to make, assuming as you seem to infer that the loved one has made their personal wishes known and are in line with the above.

He has parkensonian symptoms as well. In the home he falls repeatedly even with multiple people (he fights restraints, forgets he really cannot function without a walker/chair, and is simply too big for most people to help him single handed.)

The ubiquitous plus one.

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The U. S. Constitution doesn't guarantee happiness, only the pursuit of it. You have to catch up with it yourself. B. Franklin

"A mind needs books like a sword needs a whetstone." -- Tyrion Lannister, A Game of Thrones

If the VA is involved, you can count on there being idiots included.

The only concern with the home care is the effects on the caregiver. What options are there for a nurse to come to the house?

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"Hysterical children shrieking about right-wing anything need to go sit in the corner and be quiet while the adults are talking."

In home care has been part of what has been going on for the last 2 years. Truth is, this is really more like hospice care. There is no hope of recovery.

And this VA home actually has fantastic ratings, and we have no complaints when we go to visit. (someone's been there pretty much every day since he arrived)

Even if you don't see the idiots, they're there; trust me. They may not even be at that facility, but if you go up the food chain, you'll find them.

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"Hysterical children shrieking about right-wing anything need to go sit in the corner and be quiet while the adults are talking."

TheRiov:

It doesn't matter how "good" the facility appears to be, how well it is rated, or your personal level of comfort with the facility. My post still stands. The worst thing you can do with dementia is ask someone to die some place they don't know.

Government regulations and assisted living facilities basically equate to structured starvation for dementia patients. They're asking for a feeding tube when there's not a clear physical reason to precipitate it; loss of motor control is not a valid justification for a feeding tube when appropriate care and individual attention is available. Likewise, even if he has to be spoon fed, he can still digest and eat solid/mostly solid food: this contributes to overall health in dramatic ways.

From experience, I can tell you that assisted living facilities and sudden changes in immediate environment are almost always a net-negative for dementia patients. The ideal option, if relocation is necessary, is the largest nuclear family available; particularly one situated such that other family members at large and friends can assist with the overall care load.

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The reality of today is that the kind of care you're suggesting Khross is not possible for most of the population.

Hmm. And, you know, I think I've heard Khross explain before on this board exactly why it's not...

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"Aaaah! Emotions are weird!" - Amdee
"... Mirrorshades prevent the forces of normalcy from realizing that one is crazed and possibly dangerous. They are the symbol of the sun-staring visionary, the biker, the rocker, the policeman, and similar outlaws." - Bruce Sterling, preface to Mirrorshades

I don't think it's a determination anyone outside the situation can make. However there several outside factors that are well discussed here.

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I prefer to think of them as "Fighting evil in another dimension"

It was very hard for our family when we had to make this decision for my grandmother. She has alzheimers/dementia. We wanted to care for her at home but it wasn't allowed because we have a two story home. We had 48 hours to make arrangements for her or the state would taken custody of her and placed her in a government run facility. That was a hellish 48 hours for all of us. We toured 5 nursing homes before deciding on one. We would have prefered to care for her at home, but that wasn't an option open to us. Families faced with this situation need all the help, support and compassion they can get. It's never easy and even when you know you've made the best decision possible for your loved one, there may still be lingering guilt and bad feelings from other family members. Just remember that you're not alone and we're here to listen and hopefully be of some help. Feel free to message me if you need someone to talk to.

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Moo + Bunny = <3

While I couldn't disagree more with Aizle's opening statement, I couldn't disagree less with the rest. If the loved one made his wishes clear at a time when he had the capacity to do so, then follow his wishes, difficult as that may be.

I'm withholding my opinion, apologies for that. However, good luck and God bless.

The moral choice is obviously to kill him.

The choice that doesn't ruin your life for doing what is morally right is too complicated and too close to home for me to think about right now.

Good luck.

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"...but there exists also in the human heart a depraved taste for equality, which impels the weak to attempt to lower the powerful to their own level and reduces men to prefer equality in slavery to inequality with freedom." - De Tocqueville