FEEDING ISSUES


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FEEDING ISSUES

Postby samanthi » Thu Nov 06, 2014 10:33 pm

Hello,

I am writing after a while as my time goes by caring for mother(and household matters) and hardly have time to get on the internet.

I am in a decision making point stage or rather wondering what to do next...

From what I gather need to give mother at least 1 lt of liquids. It takes so much time to feed the liquids and sometime she puts it out or there is phlegm developing in the throat. If she doesn't take enough liquids the issue is UTI (which happened in June and she was hospitalized) and then if we give liquids there is the risk of aspiration. Where does one draw the line?

I am trying to keep away from tubes but now I am wondering whether to put a PEG just to meet the required liquid intake.

She has no balance but I still keep her on her feet with the walker and I hold her and get her to walk. Sometimes I have to push her legs too. Because I know if I get her to stop walking and put her on wheelchair her muscles will get stiff and it will be a bigger problem. This is very exhausting but I know it will be worse if I give up.

As feeding (liquids and water) takes such a long time I don't have time to do the necessary exercises for the body and throat (breathing etc). Then having to do the housework, grocery shopping etc I am dead by the end of the day.

Her neck is getting stiff and is tilted to the right (she is a left hander). There is drooling sometimes. Sometimes when feeding liquids (mainly milk tea) she puts it out because she finds it difficult to swallow because of some phlegm.

I just cannot think or understand how to prioritize her feeding (giving her food until she says enough which might be 1 hour or 1.5 hours), meeting liquid requirement, exercises (speech and body). I know the less she speaks and does speech therapy it affects the swallowing.

I feel I am running a race with her illness... when her hand get's stiff I am exercising that and then realizing when she is unable to pronounce words getting her to read and pronounce words.

Please help/advice

Samanthi
Caring for mother is Sri Lanka (Menaka 72 diagnosed with Parkinson's in 2009 and the 2010/11 confirmed it as PSP)
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Re: FEEDING ISSUES

Postby Robin » Fri Nov 07, 2014 11:10 pm

Samanthi,

You and your mother are in tough positions. What are your mother's wishes with regard to a feeding tube? If she decides she wants it, would it be for water only? What about later on?

Feeding tubes can certainly be easy ways to be sure the person is well-hydrated.

Unfortunately there's no way of knowing if the placement of the tube will be successful for your mother. There can be neurological complications in the placement of a tube. Some who get feeding tubes are never neurologically the same afterwards. My father, who got a feeding tube, seemed very depressed after getting it. He was unable to eat at all so perhaps that was a big factor. My impression is that my father's depression was not unusual among some who have gotten a feeding tube.

There is a point-of-view that those with dementia should not be given feeding tubes. I'm not saying your mom has dementia. I'm just suggesting that if she does, perhaps read some of those viewpoints. (There's a booklet called "Hard Choices for Loving People.")

Good luck,
Robin
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Re: FEEDING ISSUES

Postby myownwoman » Sat Nov 08, 2014 12:56 am

Phil has had a feeding tube for a year now. It provides him with the nutritious smoothies I make for him and the liquids he needs to remain hydrated. He is not happy that he can no longer enjoy what use to be one of his great pleasures in life - the taste of good food and drink. He no longer enjoys watching cooking shows. He didn't really want the feeding tube but did it for me because I couldn't stand to watch him choke to death... literally. (There have got to be easier ways to die.)

Like Robin suggested, you need to ask your mother what she wants - IF she is still able to make those kinds of decisions. Many choose not to have a tube and die sooner. I know that Phil wishes this were so... dying sooner than later, that is.
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Re: FEEDING ISSUES

Postby samanthi » Sun Nov 09, 2014 7:14 am

Thank you Robin and myownwoman.

As for the feeding tube, sometimes she says ok but other times she says no and that she rather cough and take everything orally. I took her to the doctor and at that time she said no. From what I gather she still wants to enjoy the food as she comments on what she takes and able to identify the food.

As Robin pointed out I am concerned about the neurological issues. Will I be worse off if she gets depressed?

If at all I would put the PEG because it would make it easier for me to give the required liquids and avoid UTI.

What is the general requirement for liquids in PSP stage 4? Mainly to avoid UTI. Also, the climate in Sri Lanka is tropical throughout the year.
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Re: FEEDING ISSUES

Postby Robin » Sun Nov 09, 2014 4:56 pm

We all need water to stay alive. Dehydration causes all kinds of problems and can lead to death.
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