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googie.cat

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Hi all--

Been lurking for a while, but need to post. My 72-year-old mother was diagnosed with the language variant (PPA) of FTD in February of 2012. By the end of that month, she was already starting to exhibit some issues with swallowing and breathing, but it wasn't until just last month (November) that the FTD clinic at Johns Hopkins referred her to the JHU ALS clinic for evaluation.

However, with five weeks to go until that appointment, we are finding ourselves in need of more guidance on how to handle her swallowing issues, at least to get us by until hopefully the JHU people can help us out. (She's been seen by a speech therapist, had a swallowing exam done, but now that SLT is basically saying that Mom is beyond her help, since it's not mechanical anymore)

I'm trying to get Dad to have Mom permanently on softer foods, and I think he's finally seeing the light, after a few really bad choking incidents over the past few days. But one of the more confounding issues is how she will hold liquids in her mouth for 45 seconds or longer before initiating a swallow. And today, for the first time, I saw after about a 60-second hold that when she did swallow, some of the water came back out of her pursed mouth.

We're trying to keep her hydrated, and she seems to be amenable to Ensure shakes, but she's not getting water down real well anymore. We know about ThickIt, and sometimes that seems to help speed the swallow, and if we really keep talking to her about swallowing, that might speed it up, but otherwise she'll just keep holding the liquid for 45 or 60 seconds (this length of time has been steadily growing since the holding first started back in September). Is this just a symptom that we're going to have to work around?

Mom no longer speaks, and we really can't be sure how much she's absorbing what we're telling her. We try to lessen the choking on food by getting her to take smaller bites, chew, and swallow, but now she's tending to try to just keep putting food in since she's not swallowing well. She'll also go right back to eating after choking. And last night, before Dad could stop her, she put an entire meatball in her mouth to try to eat.

She also motions to the base of her throat often, as though that is where she's sensing difficulties.

Any thoughts on stop-gap measures until we get to the ALS Clinic? Or things we should be watching for? Good resources to read?

Sorry this is long. Thanks for any support. (and hi to a few familiar "faces" from ftdsupportforum!)

Googie
 
Is she able to respond to you with her FTD? It doesn't sound like you should be waiting 5 weeks for an evaluation. Sounds like she needs a feeding tube to help her with nourishment. Is that what she wants? Not all want feeding tubes. Please talk to your dad about calling for an earlier appointment. I hope you get some answers soon.

Jen
 
I can't speak to the FTD part of your mum's illness but I do think she needs a PEG right away. No waiting. From posts I've read on here, people with FTD don't realize what they're doing and the danger they're putting themselves in as far as eating issues are concerned. If she hasn't expressed otherwise, she really should get nourishment through a tube. Sorry you're all going through this. Yasmin.
 
Thanks for the replies. My concern on the feeding tube is whether she would be able to comprehend it and not mess with it. Yesterday she was in the ER for something else (cat bite) and Dad had to repeatedly stop her from trying to put on her coat and leave while she was hooked up to an iv.

I know she wouldn't want a feeding tube if she were laying in a nursing home, but she's still functional in a lot of ways. I know there is a directive, but I don't know how detailed. Haven't wanted to press Dad yet.

We really want her seen at Hopkins, but it would be tough to get in sooner, though I'll tell Dad to try. She had plateaued for a few weeks, but we're all sensing a new drop off.

This is an awful situation. The FTD and loss of her speech was terrible enough, this is just more than my mother and father should have ever had to bear.
 
Your concerns about the feeding tube are well founded. A feeding tube would not have helped Glen.. he should only have been eating soft foods and yet found himself an apple. FTD effects the cause & effect executive function part of the brain... as you noted in your post, things like "I can't swallow" and "I want the whole meatball" don't link up to make "I shouldn't eat the meatball because I can't swallow it" It sounds like at this point all of her foods and drinks should be of pudding consistency. Don't hesitate to throw those meatballs in a blender with some sauce. Thicken every liquid, puree every solid and that should get you through until your appointment. Good luck!
 
Your mother has the exact combination that my Darling Husband has. He had decided, before he was sick at all, that a feeding tube was not for him. I know now that he would just pull it out and harm himself. Here is my advice. Never let her eat alone! Blend all of her foods....all of it. I have a Vita Mix and that thing will purée a jet engine. We puréed lobster last night for New Years. Give her all of her food in a bowl with the tiniest spoon that you have so its harder to take big bites. When my husband starts choking, I gently take his spoon and put down my fork and announce that we are 'taking a break,' and then give it back when the episode passes. Also, try straws for liquids. We don't thicken any liquids, but he drinks nothing without a straw. Very cold liquids go down better than room temperature ones and carbonated ones, the best of all. It's almost like they can 'feel' them more. This should lessen the holding. She is leaking because she's losing lip strength. She won't have the ability to seal them eventually and then things get messy. We have a ton of aprons ( more dignified than bibs) and these keep him neat. Also, try to have her keep her chin as close to her chest as possible when she eats or especially drinks.

I'll add more later.......he's ringing for me. Do you have a wireless doorbell? Priceless!
 
hi there
I am so sorry for what you are going through. We went through that with my mother. She did not want a feeding tube so that was never an option. We went from soft to puree we used thickit. It got harder and harder to get nutrition into her. We did learn a few tricks from the speech therapist to encourage swallowing but it was mostly just patience. (My mom never had the ALS diagnosis just the dementia but we know realize there was als as well. long story but bottom line we have c9orf72 familial als)
My sister who has als without ftd goes to Hopkins. We are lukewarm about them. We have found they are not terribly proactive and unless you make a lot of noise there are LONG waits to see various subclinics (5 months for pumonary? 6 months for assistive technology?) Tell your dad to be nicely pushy or maybe if you want a feeding tube go back to your dementia doctors
Good luck and try to take care of yourself!
 
Thanks for all the great info, everyone. Mom seems to have rebounded a bit the past few days--we are now thinking that maybe she felt worse from the cat bite than she was able to communicate, and that may have spurred some of the more alarming changes. (Hard to get anything trustworthy out of her, when she laughs at everything and her response to any question is this incredibly perfect combination of "Yes" and "No"--"yaio"--so that you honestly can't tell what she's saying.)

But I will pass all this info to my dad. He unfortunately isn't always quite as clear-eyed on her current state as he sometimes needs to be, and my brother and I have to be pretty gentle with prodding him along, otherwise he gets really obstinate--but not in any way that I feel my mom is at all at risk or anything. It's tough for a 79-year-old man to be a caregiver to the wife who took care of him for 50 years. I live about 40 minutes away, so my support is as much trying to guide him as actively taking care of Mom (though I'm there most weekends). Her primary care physician is useless, her local neuro doesn't really seem to be too interested in being a helpful guide in this, and the Hopkins FTD folks are nice but incredibly busy, so I think what we're also missing is a professional to lean on.

Happy New Year, indeed. ;-)
 
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