Expert: Mary Gordon - 7/12/2010

Question
QUESTION: My aunt is living in a nursing home and is in the late stages of Alzheimer's.  I noticed that she has declined recently.  I notice that I now must tell her to open her mouth or call her name for her to take a bite of food.  I also notice that she now will raise her head once a spoonful of food is put in her mouth.  She does this with each spoonful.. is this normal or are the symptoms increasing?  I also notice she says "no" when I try to feed her, and after several spoonfuls, she pushes my hand away saying "no, no, no'.  I was at the nursing home on Saturday and she consumed maybe a third of what was sent,  but the nursing assistant said "she ate everything for breakfast", which I find hard to believe.  In your experience with Alzheimer's, do you think this is the beginning of the end?  She is 94 years old and has high blood pressure, but no diabetes or other significant health history.

ANSWER: Hi Ellen, as the disease progresses, they do tend to be less and less interested in food and drink. It's partly that they lose the muscular coordination required to chew, manipulate food in their mouths and swallow. That may behind part of what you are seeing with the head raising. She is losing muscle tone and control.

They also seem not to feel hunger or thirst like you or I do, or be stimulated by the sight or smell of food and drink. I don't know if they feel the sensations and just don't know what they mean or what to do about them, or if they feel nothing. Eating and drinking becomes a chore and they really aren't interested at all - and will push you away. My mother in law did the same thing starting a few months before her passing. As things shut down, they need fewer calories but their digestive and urinary systems aren't functioning the same as in a healthy person either. Interestingly, there is no medical evidence that tube feeding helps them in terms of keeping weight on them at this stage, or averting suffering or other complications like infections. The best medical advice is just what you and her care team are doing - careful hand feeding.

No matter what you do, her weight will begin to slide. She will sleep more and more and be less and less aware of her surroundings. She will be less and less responsive. She will get weaker and weaker and will need to be propped or she will slump over. She may begin to get opportunistic infections as her immune system winds down. Finally, she will stop eating entirely and slide away - having been through it with my mother in law, it is a very peaceful passing. I think the brain damage is very merciful at that point, as they don't seem to be uncomfortable or distressed at all.

Given that she is 94 and frail, I suspect that she will probably continue to fade over the next couple of months - she is unlikely to survive beyond that, although they can surprise you with their toughness.

You may want to speak to her care team about her wishes, and whether palliative care such as offered by hospice, is what she and the family would want. My personal take is that at this point, you may want to concentrate on her peace and comfort and keeping her free of pain, and suspend any other medical treatments she may be undergoing, or that may be proposed (i.e. if she should become ill, do you want her taken to hospital, do you want rescusitation, tubes, respirators, procedures, drugs etc, or do you want to keep her comfortable and let nature take its course). Its a tough call for many families, but at 94, you may be more ready to just love her and let her go, rather than try to fight for more time when she has such a limited quality of life.

Thinking of you. You sound like a wonderful niece.

Mary Gordon
Toronto

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

QUESTION: Thank you for answering my question so quickly.  I still would like to go and feed her, but my husband says maybe it's not a good idea, especially if she begins to choke.  I have been a nurse for 18 years, and although I wasn't extremely close with this aunt, I still want her to have some dignity and family helping her although she doen't know who I am.  I promised my mom that I would stay close to her sister after mom died.  I really have the need to go see her and support her in any way that I can, but I still think about what my husband says, that it "may not look good" if she starts to choke.  I am having an emotional rollercoaster ride as we speak and I am torn.  What would you do?

Answer
Ellen, at the end of the day, you have to be at peace with her last months. I would do exactly what your heart and instincts are telling you to do.  - I truly think this is a time to listen to what your gut tells you. Be there for her. Help feed her. Give her a massage. Brush her hair. Rub some lotion onto her hands or feet. If she is well enough, wheel her around the corridor or out into the sun. Talk to her even if you don't know if she can hear you. Tell her about old times and what she meant to you. Bring her a treat of some pudding or custard if there is anything she seems to like. Bring a CD player in and play some of her favorite old tunes.

I cannot see for one second how anyone could regret any of that. It's loving kindness. She is very elderly, she has a terminal illness and nothing anyone can do will change that she has not long to live. I cannot imagine for one minute that anyone would look askance at you if she cough or choke, or would project any motive on you other than the very best.

As a nurse, you know what is going on with her chewing and swallowing is called dysphagia, and you have doubtless seen other patients with this challenge. I know this is terrible to watch. I suspect this is much harder on you than on her at this point.

Listen to your heart. I think it's telling you the right thing to do, and if you don't follow through, you may regret it. You really do want to look back and feel that everything possible was done for her comfort. You may regret that she ever had to go through this - it is unfair that dementia took the enjoyment of her last years for her. However, you can't regret treating her the way you would want to be treated, and honoring family commitments.    

Below my signature, I've pasted some general tips for feeding a person with dyphagia that might help to assist her to eat and improve her intake.

Hope this helps. Old age is not for the faint of heart, is it.

Mary

Ensure that foods are neither too hot nor too cold
Feed attractive, tasty, pleasant-smelling foods to enhance appetite
Make sure she is ready to eat i.e. if she still wears dentures, eyeglasses and hearing aids, have them in place.  
Try to make the eating environment quiet and inviting with as few distractions as possible. Try playing some quiet music.
Make sure she is seated correctly i.e. as close to 90 degrees as possible
Try to tuck the chin under so it points to the chest (if necessary have the person in a chair offering head support)
Sit at eye level as you assist the person with eating
Use a teaspoon to avoid putting too much food in the mouth at once
Remind the person to chew each mouthful thoroughly
Touch the person's lower lip to stimulate opening the mouth
Massage the throat to stimulate the swallow reflex
Take as much time as necessary to help the person enjoy the meal
Ensure the person remains sitting in an upright position for at least 30 minutes after each meal
Clean out the mouth after each meal

If the person is not swallowing between spoonfuls, put an empty spoon into the mouth to trigger the swallowing mechanism.
Use wide, shallow glasses instead of tall, narrow ones.
Never feed someone lying down if at all possible and do not tilt the head back. If the person must be fed in bed, prop up with pillows
Watch for foods that have a double consistency i.e. anything with a skin such as peas, grapes. These may be difficult to manage.
Do not wash food down with a liquid.
Do not use straws for chewing and swallowing problems. Straws increase air swallowing and add to the number of steps required for drinking.