Any suggestions on proving comfort without food/drink?

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dkschulte

New member
Joined
Apr 19, 2012
Messages
2
Reason
CALS
Diagnosis
03/2012
Country
US
State
IL
City
Troy
Hello,

my wife has been battling dementia for about a year or so and was just recently diagnosed with FTD and ALS when she was unable to swallow and speak. They inserted a PEK feeding tube recently and we are feeding her at home.

We have run into issues of trying to provide comfort and support for her that do not involve food or Drink! She spends some days at an adult day care and the workers there are wondering how best to handle situations where a volunteer or outside might bring in food or drink for the group. They do not want to have her feel too left out during these times?

It is hard to communicate with her to get her feelings for these situations. Anyone have any suggestions?

Dave
 
I'm very sorry about your wife. Does she show any signs of irritation or anxiety when outside food is brought to the group? How nice of the workers to think about her feelings! I don't really have a suggestion as to what to do. You could try to contact a company called F i r s t F l a v o r about their flavor st rips (like those mint breath strips, except food and drink flavors). They give out samples, but they say they don't to individuals on their website. You might be able to persuade them, though.

Good luck to you and your family.
 
Can your wife take in anything by mouth? I provided Glen's day care center with some applesauce and Ensure pudding to have on hand for such occasions. Another option might be to have one of the center workers do a different activity with her during that time. Glen's center always had 3 or 4 "stations" going on at any given time so that there were always options for the clients.
 
Dave, you sound like a very kind husband. Remember that. Those are the foundational structures in our lives. Never
minimize your availability with ability. You are doing what you can with what you have. Neither you or the adult day
care can be all things to all people.

I said that to say this. Don't let any form or fashion create guilt. As human beings, we are very adaptable. I imagine you
have seen that already. The simple fact that you are looking for an inclusive and supportive venue means you will find it, hopefully, sooner than later.

A positive and enjoyable attitude goes a long way. Try to be mindful and thankful for the success's that are achieved everyday as well as being mindful of the problems and hinderances.

In conclusion, I used to spend time as a cal, thinking that I was the pal. What would I want? How would I feel? Things like
that, and things would just come to me. I could always make Eddie smile. You will find it.

Blessings
 
Your wife is extremely lucky to have you by her side. You sound like a wonderful person. Remember that is why she married you. You will find a solution to this just because you care so much.
 
Thank you for your support and suggestions. My wife is only 52 and has Frontal Temporal Dementia along with the ALS. She cannot speak and it is hard to judge what she is thinking without asking her to write it down which she is not always willing.

She cannot take anything orally. The threat of aspiration is too great. We try and eat separately. It is a little uncomfortable because my kids are still teenagers so they are constantly snacking. When we grilled outdoors for the first time she wanted to eat the burgers!

I thought about adding some of those flavored water drops to the water when I swab out her mouth with the dental sticks.

Dave
 
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