Expert: Mary Gordon - 8/12/2011

Question
Hi Mary,     My mom, 92yrs.old, with AD, within the past few days has developed a really slow swallowing pattern...(3-4 swallows per teaspoon...pureed food put at the tip of the spoon, and liquids, just barely a 'coating ' on the spoon and then waiting a minute before each spoon.(anymore, I find she starts coughing). I give Ensure pudding mixed with pureed fruit and meat and pre-thickened juice  and hydrolyte water. My concern is, by the time I finish giving the food and medications, she gets tired and/or sleepy, making it hard to give any good amount of liquid. How, what would you suggest so she won't get really dehydrated? (By the way, she was diagnosed has having AD in 2001)

Answer
Hi Brenda, sounds like she's really having a challenge swallowing anything. This may be from the progress of her Alzheimer's, or it could be that she has had a very small stroke - it's not uncommon for people with dementia to have more than one cause of deterioration going on at once.

Have you tried lightly stroking the front of her throat after each spoonful? That will often trigger swallowing in people with dysphagia. It sounds unkind, but sometimes gently blowing on their face (nose area) will have the same effect.

Other suggestions - more and smaller feedings through out the day, and make every spoonful count (i.e. I'd forego juice, which kills appetite, and is essentially sugar water). If there is a time of day to get the most into her - often morning, when she is least tired - go for it.

Make sure she is sitting up with her head slightly forward, and has her chin tucked down towards her chest, to prevent food or drink from being aspirated. If she has a stronger side, try turning her head to that direction.

You may want to get a speech pathologist in for suggestions - they are the experts on dysphagia and may be able to come up with ideas if they actually witness her swallow patterns.

I know you realize this, but you are likely getting close to the point where her illness is starting to spiral, and there may not be much left anyone can do in terms of additional steps to get more food or drink into her orally. Have you considered next steps? Do you know what her wishes were? Would the supports of palliative care be an option? Are her medications still serving a purpose if they have become a tiring challenge to administer ? What would make her most comfortable and serene ?

Sounds like you are doing a great job and have given her care a lot of thought - she is so very lucky you are working so hard for her best interests. I know how heart breaking this illness is.

After 2 years in the final stages, my mother in law started taking in less and less food and drink, and actually started batting our hands away or clamping her mouth shut and turning her face away. We ultimately had to accept that no matter how we tried, she was not going to take in enough to sustain life in terms of fluids or calories. We knew that tubes were not an option, per her directives - and our own feeling that her quality of life was so very poor, it was not a kindness to artificially extend her existence.  I think tubes only have a purpose when they are temporary because the person will recover and return in time to a reasonable quality of life. We continued to offer sustenance many times a day, but she didn't seem much interested. She also didn't seem to be in any distress at all - she was sleeping peacefully most of the time. For whatever reason, people in later dementia often don't seem to feel hunger or thirst the way a healthy person does. It was as though she was perfectly comfortable, and had no idea what food or drink was all about, why she should take in any, or what we were fussing her about. It was very distressing for us, but she seemed entirely peaceful and serene, and just drifted away over a period of 5 or 6 weeks.  We did have the supports of hospice staff in what became a palliative phase. They were wonderfully compassionate and supportive for both her and us. We were the ones who were upset because we felt so helpless, and that we should be doing something for her.  The tide went out very slowly and gently, and peacefully.
Turns out, our real job was to sit by her side and hold her hand, and whisper our love to her.  

Call in a speech pathologist for an assessment to see if there is anything additional you can consider - and if there is not, you may have some other very profound decisions ahead shortly.

Thinking of you

Mary G.