Expert: Mary Gordon - 9/6/2009

Question
QUESTION: Hi Mary, My father, 79, was diagnosed with Alzheimers approx. 10yrs ago.  For the past year we have had to puree his food and thicken his drinks as he has had difficulty with swallowing.  He now sleeps approx. 80 percent of the day and it is very difficult to wake him for a meal.  No matter what the meal is, he has great trouble with swallowing and goes into fits of choking.  Thru reading, I have learned that this, no doubt, means the final stage or the end for him.  Could you please shed some light on the situation and provide your knowledge to the disease and my father's current condition.  Is there anything else, besides what we are already doing for him by pureeing his food and taking our time when feeding him, to help ease his choking. BTW- last winter he suffered from pneumonia once and double pneumonia but fought his way back.  He has always and still is an incredible strong man.  I feel the love that my mother and I empower on him has helped with his survival.  Thank u for taking the time to read my story.  Deb. Pls DO NOT post if my email address or surname will appear for all to view.

ANSWER: Hi Deb,

None of your personal details will be visible - allexperts screens all of that out to protect your privacy.

As I know you know you realize, increased problems chewing and swallowing is one of the signs that a person with dementia is moving into the final stages of the disease. The constant sleeping is also a sign that he is entering the last stage.

Sadly, no matter what you do, he will eat less and less, and start to lose weight, no matter how carefully you hand feed him. Sometimes they will swallow reflexively if their throat is stroked. He will sleep more and more and become more and more susceptible to infections. It is really a sign that the body systems are breaking down. He will become less and less responsive, more and more helpless. He will probably need a special mattress and frequent repositioning to prevent bedsores. He will probably have to be propped in a chair or in bed, or he will slump over. Eventually, they stop taking in enough food or drink to sustain life no matter how they are coaxed, and lapse into a coma. I know this sounds terrible, but it's part of the progress of the illness, and by that point, I truly don't believe they suffer. It is much, much harder on the family than on the person - in some ways the brain damage is a merciful thing, since your poor dad will be long beyond any fears or anxieties, or even aware of his surroundings or physical condition.  

Right now, if he's not eating much, the first strategy is to make every bite count. If he will only eat small quantities, then try to make everything he eats high calorie and high nutrient. Think about drinks like ensure, boost and gain. Think about puddings and custards and ice cream. If he eats better in the morning, consider ditching traditional breakfast foods for something with more calories.

Avoid giving him juices, since sugary drinks can kill appetite. Consider adding butter and other fats to the things he eats. If you find something he likes and will eat, let him have it as much as he wants.  Make sure he is being spoon fed in a quiet relaxed environment so there are no stressors or distractions.  Ask your doctor about getting him assessed for dysphagia (if you haven't already done so) and for suggestions about appropriate diet. As you have discovered, they do better with creamy textured foods, and thickened liquids. There are many good products out there to help.

Although this article is on a Huntington's page, it has many good tips for dealing with dysphagia from any cause, including dementias such as Alzheimer's. http://huntingtondisease.tripod.com/swallowing/id5.html
My guess is that he is at level 1, which means he needs thickened purrees (a normal person is a 6).

The suseptibility to pneumonia will continue as they can even aspirate saliva and end up with infections. The tips can help, but won't guarantee it won't happen again. I know it sounds really terrible - but in some ways, passing away from pneumonia might be more merciful than battling to the very end of dementia with everything that goes with that. There was a time when pneumonia was called the friend of the elderly.

It will be more and more of a challenge to get enough liquids and calories into him. It's common for the person to lose interest in food. Part of the disease means they lose their sense of smell and taste, so nothing tastes too inviting. They also stop understanding what sensations in their body mean, so they may feel hunger or thirst and have no idea what it means, or what they should do about it.  It is also part of the dying process, and doesn't seem to cause suffering.

In the coming months, you may be faced with some choices such as IVs or feeding tubes. Do some research before you consider saying yes. Although it seems counterintuitive, there is very little evidence that a feeding tube prolongs life OR alleviates suffering - in fact, most of the evidence suggests it actually causes suffering. http://www.sciencedaily.com/releases/2009/04/090415170609.htm
http://www.chcr.brown.edu/dying/CONSUMERFEEDINGTUBE.HTM
Very few doctors who are experienced with end of life issues for Alzheimers patients would recommend such a measure - the majority would support palliative care as the most humane.

I personally would never permit a feeding tube or IVs unless it was a situation where the person was temporarily impaired and would recover to the point where the tubes would be shortly unnecessary. We did go through the final stage with my mother in law and we elected to have palliative care for her only - no tubes or IVs, just loving supportive care to keep her comfortable, serene and free of pain. She was offered food and drink many times a day, but she really wasn't interested, took in less and less, and finally lapsed into a coma and passed away. My husband was by her side, holding her hand.

We felt heart and soul that it was her time, and that putting in tubes would have been against her wishes, and would only serve to prolong her twilight existence - it was her worst nightmare to live on when she got to the point where she was not able to do anything for herself.  She was ready to go, so if we had opted for aggressive artificial measures, that would have been about our fears and problems letting go, not about what she wanted, or what was the most loving and kind thing we could do for her. She did not seem to be suffering at all. She was very peaceful and relaxed and seemed to be in no pain or discomfort at all.  

You have to think carefully about what the goals for your father's care are. If you think about it, the real goal should be to minimize his physical, emotional and spiritual distress. At the same time you want to maximize his comfort and well being, in a manner consistent with his wishes. You are trying to achieve the best quality of life for him possible - which doesn't necessarily mean more and more medical interventions, trips to emergency, tubes, oxygen, antibiotics,  tests, IVs, poking, prodding and running around. He has a terminal illness - his dementia - which is steadily eroding his brain and all his neurological functions.  

No matter what you do, those things won't change. I know you would move mountains if you could restore him to his former health. However, you cannot fix the fact he is close to the end of his life, but I know it is very hard to consider stopping the fight, and letting events unfold. We have a very hard time just stopping all the fuss and being still. We think we should be doing something all the time, when sometimes, it really is time to do everything possible to make him feel loved and protected, take the best care possible to make him comfortable and peaceful...sit by his bed, hold his hand - and let the tide go out, however slowly it goes.

The real question for you all is, what should his final months look like? If I were you, I would look into palliative care resources in your area, and see if there are home hospice programs available. He can be assessed and they can advise on whether or not he qualifies. They can really offer wonderful supports to both your father and your family. The end of life doesn't have to be scary. It can be a truly sacred time for your family - when you can come together to make sure his final days are as full of love and free from suffering as you can make them.

I'm thinking of you. Hope this helps. I know you love him, and that love has sustained him.

Mary G.
Toronto


---------- FOLLOW-UP ----------

QUESTION: Mary, thank u so very much for your response. My feelings and comprehension of what my father is now in the midst of regarding his dementia to be true. Actually, my father has been on thickened and pureed foods/drinks for almost a year now...it has just been the last few months whereby his choking spells and difficulty with swallowing has increased.  He is constantly on antibiotics, which is something my mother has requested to ensure he is not in any pain.  As you stated in your response, this is just one other attempt to ease pain (which she hopes he is not suffering, (as my father also suffers from "aphasia" - the inability to speak as we understand was caused by a stroke(s) and cannot communicate any pain to us, although when being administered an injection i.e. flu vaccination, he does "flinch" when poked by a needle.  My father has been sleeping the majority of his time and nothing will wake him.  So, as you mentioned in your response, this also is a major indication of nearing the end?  He is living in a private nursing home, one that is owned by a wonderful lady.  There are approx. 10 residents within the home, all suffering from some form of dementia.  It is named, Alexis Lodge, after her only daughter.  The staff are wonderful and loving, next best thing to home.  Locating and placing my father there was a saving grace.  Way back, when it was time to place him in a care facility, I took my mother to visit nursing home (large institutions) and personally we were so turned off by them.  Very cold atmosphere, insufficient staffing and it appeared the residents were severely "drugged".  In my fathers case, in the 7 yrs of living at the lodge, he has only been administered medication(s) when completely necessary.  I do thank you for your response yet again and truly appreciate the insight you have given.  Take care of yourself and your family.  Debbie.

Answer
Debbie, here is a good description of the last stage

http://www.alzinfo.org/clinical-stages-of-alzheimers-disease_page3.asp

Even if your father had not had a stroke, he would have lost his speech. My mother in law lost hers a full two years before she passed away. It became just repeated nonsense syllables with the very occasional real word in there - but you couldn't talk to her. She couldn't answer questions and didn't seem to understand what was said to her. With time, she said less and less.

You are lucky to have found a caring facility for him. Wishing you all the best.

Mary G.