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 Hospice 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Hospice
Leone, thank you so much for posting this. Would you mind re-posting it in the Treatment Options forum, with something about feeding tubes in the title? I think that might give it a broader audience.

I have emailed the link to our kids, and to my sisters. Since written wishes are not always followed, we will all have to be vigilant for Coy and for my mother, if the time comes they are in that situation.

I can only imagine how stressful it is for you to see Dale not taking nurishment. You have great strength!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Tue Mar 15, 2011 8:25 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Hospice
Thanks, Jeanne. Not giving him food is the hardest test for me yet. I have a refrigerator filled with items that he likes and the fact that he now cannot swallow is heart breaking for me. The last time I tried to give him food was yesterday when I fed him a few blueberries which are his favorite fruit. He ate a few and refused the rest.

As I wrote earlier, I tried to give him applesauce this morning and it just remained on his tongue. That was sickening. I had to reach into his mouth and pull out what I could. He just stared at me - helplessly.

Then I tried some juice and he coughed and coughed. I will not repeat that. So you see, the decision is really that of his body - in a way. I guess his brain has forgotten how to swallow.

A few days ago, I tried to give him his pills in applesauce and the whole mess ended up on his shirt and bedding. He explained that I told him to swallow. Now I think that his brain was confused even then.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Tue Mar 15, 2011 8:48 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3124
Location: Vermont
Post Re: Hospice
This pain at the end thing is very real for some of our LOs, as I know it defintitely was for my dad. The only thing that gave him any relief was the morphine, and that made him go to sleep, but that was preferable to the excruciating look on his face the last few weeks, or the crying out in pain.
I find the discussion about eating in those last weeks and days really interesting. My dad, who'd lost over 135 lb. in 18 mo. and looked like a skeleton the last couple of months, barely ate anything most days. A bite of this, a bite of that, and maybe some juice or choc. milk. However, the day he died he ate a good sized breakfast and lunch. I'll always wonder what was up with that. I'd asked for months for him NOT to be force-fed if he didn't want to eat. His favorite CGs cried when I told them that, but I reminded them that his body was shutting down and had been for some time. They'd make his favorite foods after the dining room was shut down for the night, and get him to eat things like part of a grilled cheese sandwich or soups that were his favorites. These ladies went out of their way to take loving care of him. Feeding tube? Totally not on the radar screen.....
I feel very lucky that where my dad was, we had very few issues with the staff or their regulations after the original DON left. They never suggested or pushed a feeding tube, and with a waiting list to get in, it would not have served them any better financially to push the feeding tube idea on any of the residents. The former director and the new director were extremely respectful of family requests and philosophy. (It's too bad my dad's medical team didn't follow that same idea.)
Hang in there everyone, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Mar 15, 2011 10:32 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Hospice
LTCVT wrote:
However, the day he died he ate a good sized breakfast and lunch.
Your dad apparently didn't have any issues with swallowing at the end. Dale ate a few blueberries on Monday, 14 Mar. and on Tuesday, he couldn't swallow applesauce. It just stayed in his mouth. Later, I attempted to give him a sip of juice and he gagged. I can't imagine giving Dale food or drink today. It's obvious that each one is different.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Mar 16, 2011 6:42 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3124
Location: Vermont
Post Re: Hospice
You are right. Despite all the people who post on here about their LOs having swallowing issues, he did not ever seem to have that problem. That's about the only set of muscles that was still working in his entire body. I just find it odd that he didn't want to eat and that his favorite foods tasted horrible to him his last few months, yet he ate 2 meals on his last day. It seems very odd to me..... Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Mar 16, 2011 9:33 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: Hospice
Lynn, that sounds strange to me, too. Almost as if part of his old self came back right at the end.

My mother is the same way about food. We never know what she will want to eat. Often she doesn't know, either. She asks for things and then won't eat them. The one consistent thing is chocolate--always a favorite of hers and still is.

Julianne


Wed Mar 16, 2011 9:38 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3124
Location: Vermont
Post Re: Hospice
It almost seemed like a "last supper" kind of thing to me. My dad ate chocolate every day of his life. It was his absolutely most favorite food, so the week before he died, when he wouldn't eat anything else, I asked him if he wanted a Klondike bar. He did, took one bite and told me it tasted horrible, just like he'd done months earlier with French Fries and crab cakes, also 2 of his most favorite foods.
So, no ice cream, and I gave him a Hershey's miniature. He ate about 1/3 of one of those tiny things and didn't want that either. I knew things were bad if he wouldn't even eat chocolate. That's what made me even more surprised when they told me he'd eaten breakfast and lunch the day he died. I hope I eat a ton of chocolate in my last hours. That would be a good way to go! Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Mar 16, 2011 10:14 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: Hospice
Yup, if my mother stopped eating chocolate, I would know something was going on. I bring it to her every week and it seems that no matter how much she gets, she eats all of it by the next shopping trip. Her weight and blood sugar are normal, so at almost 87, why not?

Julianne


Wed Mar 16, 2011 10:34 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3124
Location: Vermont
Post Re: Hospice
Exactly - a few years ago I gave up trying to get my dad to eat a healthy diet. He'd lived on Coca Cola, Hershey Bars and TastyKakes his whole life. He always grew a huge vegetable garden but ate very little from it, giving most of it to friends and neighbors. He LOVED salt and ate tons of that on his hamburgers, fries and the few other things he actually liked. I figured if he'd made it to 85, who was I to tell him what to eat? Even in the early 19th century his ancestors lived to about 90! His grandparents ate cheap white bread and lots of animal fat and lived till they were 89, so I gave up trying...... His great aunt was a chain smoker and drank a water glass of bourbon every night with her "girlfriends" who called it "tea time". His family genetics should have been tested to see why they all lived so long on such an awful diet! Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Mar 16, 2011 10:51 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: Hospice
I think there's a lot in our genes that controls things no matter what we do! Just look at all the people who do everything "right" and still end up with some awful illness. Sigh......

Julianne


Wed Mar 16, 2011 11:20 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Hospice experience - update
Update: Dale began rattled breathing about 4 am (which awakened me) and which continued strong for about six hours. He was then quiet until about 2 pm when he began to have loud hiccups. Chlorpromazine 1 ml (by mouth) has been started and will be given every four hours. Dicyclomine 10 mg capsules will be emptied into his mouth between cheek and teeth and spread with moistened mouth spong for rattling - as needed.

He has had no urine production at all since last night. There is little response except in minor facial expression (mostly raised eyebrow).

The hospice aide who bathed him about 12:30 asked, "Is he waiting for someone?" She thought he was very close to death and might be waiting for permission. His feet are now swollen and his hands are blue. Thankfully, he has limited pressure sores - though we noticed a new one on one foot.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Mar 17, 2011 3:59 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Hospice
Dear Leone, sending you hugs and praying you have the strength for this final part of your difficult journey. God bless you both xxx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Thu Mar 17, 2011 4:23 pm
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Joined: Mon Jun 21, 2010 2:24 pm
Posts: 32
Post Re: Hospice
Leone, I cannot say any more than what has already been said. You have been a brave warrior through it all. May the Lord give you strength and courage as you face these final days. My prayers and thoughts are with you constantly. Thank you for being so brave as to allow us to continue on your journey to the final moments. I hope you have plenty of family and friends there for you now. With love and prayers, Misty


Thu Mar 17, 2011 5:34 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Hospice
With encouragement from a few and perhaps the tolerance of others, I'll continue posting about Dale's final journey. (I know I would have been interested, Misty, if another had posted this.)

Dale continues to 'rattle' in spite of the medicine that was given to calm the 'rattle.' Thankfully, the hiccups are gone. The nurse suggested that the hiccups were probably the result of air being taken in as Dale breaths through his open mouth.

I'll be giving him more of the medicines in about one hour. I'm sure the medicine is more for my ears than for him, however. He is probably not at all aware of the sound of his breathing. I actually took a nap in the same room .... so I know I can sleep tonight if this continues. It's sort of like listening to the wind during a storm.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Mar 17, 2011 6:45 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: Hospice
Leone, when they are not getting any hydration, their skin breaks down rapidly. There is almost no way to prevent it all. God bless you! Hugs!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Mar 17, 2011 6:50 pm
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