Jeanne G,
To answer your previous question... Researchers and clinicians know about "hyperorality" (drinking or eating everything excessively in sight) by giving patients the "Frontal Behaviorial Inventory." As I mentioned, hyperorality is associated with frontal lobe dysfunction, which happens in FTDbv, PSP, and CBD.
Robin

Oh Kate, how difficult for you!

A person prone to aspirate can aspirate her own saliva. I don't think that a mechanical soft diet is an iron-clad guarentee of not choking and not aspirating. It does reduce, but not eliminate, the risks. So if Mom can still eat pasta salads about as well as she can eat ground McNuggets (ugh) I say that is what she should eat! Coy's doctor has told him to eat what he wants to, and if something seems to bother him (like nuts or rice) then to avoid that particular food. Coy is not as advanced in the swallowing problems as your mother, so this is not directly applicable, but in general I think your close observation is more valuable than a static list. I have noticed that Coy has done more coughing/choking lately and it remains to be seen if this is temporary and related to some weakness he is experiencing, or if it more permanent.

Coy doesn't keep eating until he makes himself sick, but he does tend to eat the amount placed in front of him, at least if he likes the food. So I take charge of portion control. If we have a family get togeher with a buffet style meal or we go to a restaurant with a salad bar, etc. it is especially important that I assist in the serving!

Hang in there!

I thought I'd post this though some of it may be a bit off topic but some definitely is. My husband has/had three different kinds of coughing and choking. A problem with eating so quickly that he doesn't chew and swallow before putting in more food, as discribed in these posts, which can lead to coughing, choking, regurgitation or that lovely solution spitting it all out. He has had a swallow study and passed so it's just a matter NOW of getting him to slow down. The second type is caused by his excess saliva which was mentioned by another poster. He can't handle it all and it chokes him from time to time. The consensus in the "drooling" thread was that there wasn't much to be done about this; It's just LBD. But the third type we seem to have under control at the moment, though who knows how long it will last. my husband had a constant (24 hours a day), dry, unproductive and exhausting cough. He was in the hospital recently for internal bleeding (long story) and was given Prilosec. Lo and behold! The cough disappeared. He must have had a problem with acid reflux. He switched to Tagamet when he got home because Prilosec interferes with one of his medications. Hopes this helps.

My MIL continues to shovel food in, and yet continues to lose weight. Each week her weight goes down a couple of ounces. Was 146 at start of all of this a couple of years ago. Is now down to 116. Refuses Ensure. Will bring it up to doctor at tomorrow's appointment.

Donna,
Have you focused on getting super-fattening foods consumed? High butter-fat ice cream, cheese, guacamole, etc.
Robin

Frank coughs constantly, I think it's the excess saliva. He's spends much of the day in his recliner so he's not drooling and the saliva has to go down causing him to cough. Since I've raised the head of the bed the night time coughing has been less. He's lost 25 lbs since the first of May, he just refuses to eat or drink. Some days he'll eat a small, but healthy dinner other days he won't open his mouth. I can't find anything he'll eat for breakfast and lunch is also a challenge. I crush his meds in ice cream and some days that's all he eats.

We just do the best we can, that's all we can do.

Gerry

She eats lots of high cal foods, which makes cooking a challenge since my husband is on a low fat heart healthy diet. Her cholesterol was high last year, but I nixed the cholesterol pill. At 88 what good does it do?

We took my dad off his cholesterol & BP meds too when he was 88. With all the things that were going wrong with him and at his age, it seemed pointless to keep giving him all theses meds. If he wanted to eat only ice cream 3 meals a day, at that point, it was fine with me. I'd tried getting him to eat healthy his whole life to no avail! He lost over 135 lb. in less than 2 yr. After a while, he just did not want to eat and I am guessing that it was his body's way of shutting down little by little. Lynn

There does come a time where it really doesn't make sense to continue with certain medications and when they are a problem with swallowing it becomes more of an issue , we had stopped most meds many months before my husband passed, it was just too hard for him, as to the food, I would think because they are so inactive their body doesn't need as much !

I haven't posted much here but I do come and read sometimes. My father has LBD and has just started receiving hospice care at home. That part didn't really hit me until tonight. He's barely eating anything. He has a very hard time swallowing and has just given up trying I think. Up until a week or so ago his eating was intermittent ... some days he ate really well, some days not. But when he would drink you could hear him swallowing very hard.

He also started falling a lot ... which is what made my mother start the hospice care. We've been waiting for her to say she was ready to move him to a care facility ... but I think we passed that point without realizing it. Sunday is his 76th birthday.

Pat, I am so sorry for what you are going through. I hope that you and your mother are finding comfort in the Hospice care.

Pat, I'm so sorry to hear about your Dad's decline. I know there are no words to describe how awful it feels watching him decline and not being able to do anything. If am sure he know he is surrounded by ye're love and that ye are doing the best ye can possibly do for him. Ye will be in my prayers,
God Bless,
Ger x

Pat, Sorry to hear about your dad's decline, and my heart goes out to your mom. My husband's situation was much the same, hospice came in and he rallied. He now eats small portions but enough, has a very hard swallow but it hasn't caused a problem. As his eating improved, his mobility declined, he can no longer walk or stand. It's the rollercoaster that I find so difficult.

Hospice is wonderful, and your being there for your mom is also very important, good luck to all of you.

Gerry

Pat, I'm so sorry to hear about your father's decline. I too have experienced the somewhat sudden realization of what is happening and what is going to happen. I think when we're in the moment giving love and care the knowledge takes a back seat, and then in a quiet moment it hits us. Praying for all of you. Take care.