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Once a person with advanced dementia can't swallow or has forgotten "how" to eat or drink, I just don't see how anyone can help them. It seems cruel to prolong their lives by force feeding or hydrating them - if you could even do so. I know that neither my mother nor my MIL would have tolerated a tube or IV of any sort.
It's just a very difficult dilemma in my opinion.
I agree, I don't see the point in prolonging the life of someone who has advanced dementia. As far as the morphine goes. I'd personally rather give someone with advanced dementia more pain reliever than they may need than not enough. For me, it's all about making them comfortable. It's also possible that they may be in more pain than they are showing.
I agree that all sorts of external factors can exacerbate dementia, but my gosh, dementia patients, especially those with advanced dementia, are so incredibly difficult to take care of.
For instance, just making sure they drink enough water - I'm not sure you can actually make them drink enough liquids if they simply are not able or willing to do so (probably the same thing actually). For instance, I remember during the last few months of my MIL's life, she simply wouldn't or couldn't swallow anything. She'd just open her mouth and whatever was in there would dribble out.
My mom was keeping pieces of food in her mouth and good luck getting them out - she wouldn't or couldn't swallow, and this was not with any morphine in the picture. Same with my MIL - no morphine with her either.
Once a person with advanced dementia can't swallow or has forgotten "how" to eat or drink, I just don't see how anyone can help them. It seems cruel to prolong their lives by force feeding or hydrating them - if you could even do so. I know that neither my mother nor my MIL would have tolerated a tube or IV of any sort.
It's just a very difficult dilemma in my opinion.
At her request, I give her the mouth swabs with lemon italian ice so she can clean her mouth after meals. The food particles are swallowed normally or come out with the swab when she removes it. I keep about 10 swabs ready so she can repeat the same process until she feels she's done.
If you use regular swabs, you run the risk of accidentally having food go down the windpipe. If you wet them with water, you run the same risk and we've had it happen on one or two occasions.
We rejected tube feeding.
She is asked if she is hungry and what she wants to eat. There is no forced feeding.
She eats normal fillets of fish without the breading. It is basted in butter, garlic, and parmesan cheese. If it needs tartar sauce or cocktail sauce, she asks for it.
She eats Japanese rice mixed with mashed vegetables.
Each situation is different for people with dementia, and level of ability can vary according to temporary conditions. Familiarity and repetition seems to help so that she is comfortable with an activity, such as bathing, changing, feeding, etc.
Late-stage dementia can last for over a decade. It will probably be heart failure, kidney failure, or pneumonia that will make it difficult to continue . There is cruely in attempting to manufacture those conditions through intentional starvation, dehydration, or neglect.
At her request, I give her the mouth swabs with lemon italian ice so she can clean her mouth after meals. The food particles are swallowed normally or come out with the swab when she removes it. I keep about 10 swabs ready so she can repeat the same process until she feels she's done.
If you use regular swabs, you run the risk of accidentally having food go down the windpipe. If you wet them with water, you run the same risk and we've had it happen on one or two occasions.
We rejected tube feeding.
She is asked if she is hungry and what she wants to eat. There is no forced feeding.
She eats normal fillets of fish without the breading. It is basted in butter, garlic, and parmesan cheese. If it needs tartar sauce or cocktail sauce, she asks for it.
She eats Japanese rice mixed with mashed vegetables.
Each situation is different for people with dementia, and level of ability can vary according to temporary conditions.
Oh, I'm not criticizing you or your mom or the method of feeding. I'm saying that if it comes to having to force feed someone with dementia, it seems unnecessary and probably distressing to the person with advanced dementia, because they probably can't understand a tube or an IV.
Your mom wants to eat, so let her eat. If she wants to drink, let her drink.
My point was that WHEN A PERSON FORGETS HOW TO DO THOSE THINGS, I don't see the point in force feeding them via a tube or IV - if they can't understand what's going on. It's upsetting but it's the natural course of things for people whose bodies are shutting down, to quit wanting to eat or drink. Clearly your mom is not at that state.
I agree about the swabs too - been there, done that.
There is a lot of agitation with a feeding tube or an IV. She is much more comfortable now.
They don't really forget how to eat. The part of the brain that controls voluntary movement has been damaged. That's why they can't consistently use their hands to manipulate a fork or a spoon on their own. That's why they have to wait to swallow when they receive food in their mouth. This is all caused by the damage to nerve cells in the motor cortex which sends electrical signals to the relevant muscles to control activity.
They also aren't capable of maintaining their teeth so soft food has to be provided.
It takes about 1 hour to 1 1/2 hour for each meal. That is too much time according to the hospice aide.
Some people, including the nurses and aides, also confuse not wanting to eat as a permanent state. It could've been brought on by a temporary illness or something else. It is all just a numbers game, and aides can get into trouble if they spend too much time on one patient (unless the family is raising a stink). So they will only put in a little effort. I have a neighbor who volunteers at the nearby facility, and she says that families were having to come in to feed their loved ones.
The other thing I might suggest is that the facilities change the residents more often instead of giving them Ativan. They sleep like a baby after they've been cleaned and changed.
It could've been brought on by a temporary illness or something else.
Something else turns out to be constipation today. Will have to wait on the stool softeners to take effect and only fluids till then. She did have the strength and energy to go to the bathroom instead of being changed in bed.
They don't really forget how to eat. The part of the brain that controls voluntary movement has been damaged. That's why they can't consistently use their hands to manipulate a fork or a spoon on their own. That's why they have to wait to swallow when they receive food in their mouth. This is all caused by the damage to nerve cells in the motor cortex which sends electrical signals to the relevant muscles to control activity.
I used to think it was apathy when she would sit there in front of the dinner table and not start to eat. We lost valuable time and she lost weight. No useful information about the lack of action came from her doctors or nurses. They know what's happening, but they lack the knowledge about why. Except when she has anxiety that spurs action, she has difficulty to stringing together movements of her arms, hands, and feet to do things like take up food in a fork and move it to her mouth. One sees the same thing with the difficulty in stringing together words to form a sentence. I can guide her to perform the movements in activities, such as changing, toileting, and so on, but she can't do it herself
Ichoro, You are obviously a very compassionate person to care about your Mom so deeply.
But fair warning, if anyone extends my own life by more than about ten minutes after I can't take care of myself with no hope of regaining function, I'm going to come back and haunt them after I'm gone, and I'll sign those papers right now, no problem. In fact, this thread has spurred me into putting that decision into an advance directive when I create my trust.
Ichoro, You are obviously a very compassionate person to care about your Mom so deeply.
But fair warning, if anyone extends my own life by more than about ten minutes after I can't take care of myself with no hope of regaining function, I'm going to come back and haunt them after I'm gone, and I'll sign those papers right now, no problem. In fact, this thread has spurred me into putting that decision into an advance directive when I create my trust.
I was the lone family member to consent to a DNR for her at the hospital. Everyone else sat on their hands. There are rational reasons to decline the application of CPR where the patient's current physical condition and mental capacity for recovery post-CPR are taken into account. There are also rational reasons to decline the use of unnecessary drugs where a medical professional can't provide a medical reason to do so. It also casts into suspicion the motives of the medical professional when she complains that morphine wasn't supplied to the patient when baby aspirin was sufficient to alleviate temporary minor pain. It is a long leap from baby aspirin to a morphine when there are plenty of intermediate pain remedies, including aspirin, ibuprofen, acetaminophen, extra strength acetaminophen, and oxycodone.
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