How can I help my husband (advanced stage) take in fluids?

[susanbennett100]

He is so bent forward and cannot tip his head back or move it, so feeding cup is now impossible. Up to now he has managed with a straw in a safe-sip cup but can no longer direct it into his mouth (eyes or nose!) Tilted back in his recliner works but causes coughing fits.

[Yvonneandgeorge]

Sad this is, but sorry didn’t really have that problem I hate PSP such a horrible illness, I am sure someone might have the answer, stay strong and safe. Big hugs to you Yvonne xxxxx

[Nanny857]

This sounds so horrible, I really feel for you both. The only thing I can suggest is ask his Speech Therapist, for an urgent reassessment. They might suggest Peg Feeding. Hopefully this will be resolved soon for you both.

Lots of love

Nanny857xx

[HilsandR]

I am so sorry that your husband has reached a stage where feeding him is becoming impossible. As nanny857 suggested, get him referred back to his medical team as a matter of urgency. If your husband’s wishes are not to be peg fed then at least he can be made comfortable.

With love,

Hils. x

[LuisRodicioRodicio]

Hi susanbennett100!

We have the same problem.

Our solution (which often works but sometimes does not) is as follows:

1) With the fiber-free part of the head of an electric toothbrush, we massage the outside of the jaw and the inside of the mouth to stimulate the muscles that open the mouth.

2) Place a big napkin under the chin.

3) With the caregiver's left hand, the head is raised and with the right hand the spoon is inserted into the mouth and it is removed empty.

4) The head returns to the position where the chin is close to the chest (in this position it is easier to swallow) so that patient can swallow better.

5) Steps 3 and 4 are repeated as many times as necessary.

It is normal for the napkin to get very dirty.

Note.- It is the phase in which we are, the patient tends to this frequently drowsy. If he is very sleepy it is useless to feed him. It is preferable that you take something the patient like very much (An ice cream for instance) to entertain the stomach and not force feed it. This happens especially at dinner and in the morning our patient eat breakfast very well (generally the easiest and fastest meal of the day)

Hoping to be helpful

Hug and luck.

Luis

[daddyt]

Very good advice that Luis has offered. Keeping the head down towards the chest to swallow was suggested to me by the SLT very early on in the disease.

Note* you can never go wrong with ice cream.

Tim x

[Marilyn_cbd12]

Susan, this is a tough one and Luis has certainly been creative; I hope his suggestions are helpful to you. My husband cannot eat or drink except in a reclining position (lounge chair that tips way back). I bring him about halfway up in the reclining angle and then offer him liquids in a deep cup (limits spillage) that is not full using a flexible straw. I hold the cup and tilt it just enough so that the bottom of the straw is getting fluid. We do sips and pause, sips and pause, etc. He does not have a PEG and did not want one. We did a third swallowing study about six months ago and learned that his swallowing mechanisms were still intact more or less, but that his fear of choking made him chew small pieces of food a long time and this interfered with his taking a breath and then - he would cough to get the breath and that made the swallowing task harder.

Marilyn

[Bhakthan]

Maybe a PEG tube for direct feeding into the stomach is a good solution? My wife had it inserted when she showed difficulties in swallowing and chewing. She was cool with it. But slowly she slipped into a semi coma state and left 😭 me alone!