[Debbie D]

Hi,
My FIL, 90, is in a nursing home. He was dxd with Parkinsonism several years ago, but I think it's full blown.
Anyway, he presented with stiffness in gait, arms not moving when walking, finally used a cane, then a walker. Now he is in a WC...he is aspirating food and drink, and has signs of chemical pneumonia. He refused to eat the pureed food ordered, so he had his POA sign a waiver to get chopped food. He still doesn't want to eat, and now is slouching to the side.
He can't completely empty his bladder any longer, either...
He has that empty mask look, and seems weaker and weaker.

Is it time for hospice? Can anything be done in your opinion? His wife of 67 years has Alz...and fights to keep him fighting...this has been a heartbreaking journey for all of us...

[paula_w]

That is his decision i would think. it sounds very bad but is he coherent? so many sick people starve themselves, if he can't feed himself and won't eat that's what will happen. but i am not a doctor. i am a child of two parents who have died with illness and old age. They both wanted to die and weren't eating. It's a grueling and sad time for everyone.

his wife has alzhiemer? don't forget to take care of yourself


best to you in a really tough time.

[reverett123]

According to Doc Lieberman, the pre-sinemet end came as pneumonia from aspirating food. And don't stress over it. Whether he knows it or not, he is old and weary. In the old days this sort of pneumonia was known as "the poor man's Angel of Mercy" with good reason. Add in his wife's AD and you could end up in terrible shape from the stress. Voice of experience here.

[Bob Dawson]

I admire the courage of all of you.
Angels and heroes.

[Debbie D]

Thanks for the info and support...I was actually in the hospital with what was thought of as heart attack last week...I have MS and so I have a feeling everything going on exaserbated that, plus my thyroid numbers were low again, which could have masked as cardiac sxs...

It's been a rough journey. MIL keeps nagging him, but she doesn't know any better...I saw him early this evening...he was in bed and talked as if he had cotton in his mouth, which could be due to not having any liquids...

It's so sad, but it IS his journey...we're just along for the ride

[stevem53]

All I can offer is my thoughts and prayers Debbie..Im like you, just going along for the ride, and trying to make the best of it, one day at a time

[Conductor71]

Originally Posted by Debbie D

Hi,
My FIL, 90, is in a nursing home. He was dxd with Parkinsonism several years ago, but I think it's full blown.
Anyway, he presented with stiffness in gait, arms not moving when walking, finally used a cane, then a walker. Now he is in a WC...he is aspirating food and drink, and has signs of chemical pneumonia. He refused to eat the pureed food ordered, so he had his POA sign a waiver to get chopped food. He still doesn't want to eat, and now is slouching to the side.
He can't completely empty his bladder any longer, either...
He has that empty mask look, and seems weaker and weaker.

Is it time for hospice? Can anything be done in your opinion? His wife of 67 years has Alz...and fights to keep him fighting...this has been a heartbreaking journey for all of us...

Debbie,

Good question on the Hospice. If only a manual came along on how to live and die with chronic disease...

If he is not eating, I would think the next thing doctors will try is feeding tube. I know for me hospice starts there.

Just curious, has your FIL ever been medicated to control his symptoms? I know given his age he cannot have high doses of meds, and he most likely choke on pill but there are liquid suspensions that can be prepared.

Best to you,

Laura

[made it up]

Hi Debbie,

Paula, Rick and Laura all gave excellent advice.

Can I just add to that with some practical needs that might help.

A hospice/palliative care unit is a much kinder environment for him to be in.

Insist he's given the drug levodopa (brand name usually Sinemet) at regular intervals. It will help with swallowing, he'll feel more comfortable and less rigid etc.

Give him small servings of the food he likes (more palatable than hospital food)
Keep his mouth moist, also get thickened liquids they not only are easier to swallow in someone with poor swallowing but provide more calories for him.

Ask staff for special mouth moisturiser that they should have and also lip balm.

If you're up to it the sucker sitting behind his bed can help with gagging of sputum.

Urinary problem can be solved by a catheter.

You or others can stay with him day and night in this type of setting.

Best wishes and take time out for you!

Lee

[Conductor71]

Originally Posted by made it up

Hi Debbie,

Paula, Rick and Laura all gave excellent advice.

Can I just add to that with some practical needs that might help.

A hospice/palliative care unit is a much kinder environment for him to be in.

Insist he's given the drug levodopa (brand name usually Sinemet) at regular intervals. It will help with swallowing, he'll feel more comfortable and less rigid etc.

Give him small servings of the food he likes (more palatable than hospital food)
Keep his mouth moist, also get thickened liquids they not only are easier to swallow in someone with poor swallowing but provide more calories for him.

Ask staff for special mouth moisturiser that they should have and also lip balm.

If you're up to it the sucker sitting behind his bed can help with gagging of sputum.

Urinary problem can be solved by a catheter.

You or others can stay with him day and night in this type of setting.

Best wishes and take time out for you!

Lee

This advice is what belongs in our unwritten manual but for now we will have to settle for a sticky note.

How do we get this in there?

Laura

[reverett123]

I'm going to tread carefully here because the field is heavily mined. This is good advice on handling someone's last days - but only if you can. Again speaking from experience, you may not be able to shoulder this burden, especially if there are few family members to share it. It may become necessary to protect your own already precarious health and back away. Some things that I learned as my wife and I nursed my four grandparents through their last days over a continuous eight years of hell-
1- If you will do it, the rest of the family will let you.
2- It is not appropriate that the young should be sacrificed to the old.
-Rick

Originally Posted by made it up

Hi Debbie,

Paula, Rick and Laura all gave excellent advice.

Can I just add to that with some practical needs that might help.

A hospice/palliative care unit is a much kinder environment for him to be in.

Insist he's given the drug levodopa (brand name usually Sinemet) at regular intervals. It will help with swallowing, he'll feel more comfortable and less rigid etc.

Give him small servings of the food he likes (more palatable than hospital food)
Keep his mouth moist, also get thickened liquids they not only are easier to swallow in someone with poor swallowing but provide more calories for him.

Ask staff for special mouth moisturiser that they should have and also lip balm.

If you're up to it the sucker sitting behind his bed can help with gagging of sputum.

Urinary problem can be solved by a catheter.

You or others can stay with him day and night in this type of setting.

Best wishes and take time out for you!

Lee