Expert: Mary Gordon - 3/8/2009

Question
my grandmother a young 93 with ad up until she was recently hospitilized was eating like a champ always had a good appetite she recently had the shingles a week later was admitted to the hospital with heart failure and an infection they were cheating whichthey still dont know whar was causinf all this needless to say shes home now doing ok shae has had a live in for 4years now she lives with my aunt in beautiful and has a place to eat in peacful enviorment weve tried everything from bribing her to go to atlantic city for easter . she of course does not remember in the next 5min we need help!!!!! due to her religion she wont accept the feeding tube god forbid it comes to that i appreciate any advice thanks a loving grandaughter

Answer
Hi Beagarrone,

Bea, loss of interest in eating and drinking, and increased problems chewing and swallowing is one of the signs that a person with dementia is moving into the final stages of the disease. She has also had a major health setback with her heart, and her shingles (which is a reactivation of the chicken pox virus in the nerves). Getting shingles means her immune system is very depressed. Any illness will make her cognitive status really seem to drop. It is also common in the late stages to suffer all sorts of infections. It is really a sign that the body systems are breaking down.

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

Avoid giving her juices, since sugary drinks can kill appetite. Consider adding butter and other fats to the things she eats. If you find something she likes and will eat, let her have it as much as she wants.  Make sure she is being spoon fed in a quiet relaxed environment so there are no stressors or distractions.  Ask your doctor about getting her assessed for dysphagia and for suggestions about appropriate diet. 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. http://huntingtondisease.tripod.com/swallowing/id5.html
My guess is that she is at level 1, which means she needs thickened purrees (a normal person is a 6).

It isn't her fault that she won't eat, and she isn't doing this on purpose. She is also past the point where she can really understand or respond to bribes like a trip. Think of her like a tiny baby with no memory of the past or knowledge that there is a future. Right now, she is entirely living in the now.

Part of the disease means they lose their sense of smell and taste, so nothing tastes too inviting. They start to have a lot of trouble chewing and swallowing - which is from the disease. They lose their muscular coordination. 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.

There is very little evidence that afeeding tube prolongs life OR alleviates suffering - in fact, most of the evidence suggests it actually causes suffering. 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. You are fortunate to also have the support and comfort of knowing what your grandmother's wishes were.

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 they 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.  

You have to think carefully about what the goals for your grandmother's care are. If you think about it, the real goal should be to minimize her physical, emotional and spiritual distress. At the same time you want to maximize her comfort and well being, in a manner consistent with her wishes. You are trying to achieve the best quality of life for her possible - which doesn't always mean more and more medical interventions, trips to emergency, tubes, oxygen, antibiotics,  tests, IVs, poking, prodding and running around. Not only is she 93 with a failing heart, but she has a terminal illness - her dementia - which is steadily eroding her brain and all her neurological functions.  No matter what you do, those things won't change. You cannot fix the fact she is close to the end of her life. 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 her feel loved and protected, take the best care possible to make her comfortable and peaceful...sit by her bed, hold her hand - and let the tide go out, however slowly it goes.

The real question for you all is, what should her final months look like? She may recover somewhat from her bout of heart failure or shingles, but there will doubtless be similar events coming. If I were you, I would look into palliative care resources in your area, and see if there are home hospice programs available. They can really offer wonderful supports to both your grandmother 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 her final days are as full of love and free from suffering as you can make them.

I'm thinking of you. Hope this helps.

Mary G.