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 My father is not eating now. 
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Joined: Mon Mar 21, 2011 11:26 pm
Posts: 49
Location: St Pete Beach, FL
Post My father is not eating now.
Hi everyone,

I think my father is very near the end. He is starting not to eat. With each meal, with lots of trouble, we might be able to get him to swallow four bites of applesauce and drink a little chocolate milk. He goes in and out of sleep all the time, and we have to constantly wake him between bites. Even at meals when he is alert/awake the whole time, he doesn't eat hardly at all. It's hard to tell if he's refusing or if he just can't eat. It sometimes appears like he is trying but forgets the food is in his mouth and we say, "Ok dad now swallow," etc. He will repeat nonsense syllables or say "please please please" over and over. He can still answer yes and no questions, but we're now no longer sure if he's answering them correctly, because last night just before dinner I asked him if he was hungry and he said yes, but then the same non-eating issue when we feed him.

He is totally slumped to the left now, and stiff, and it's harder and harder to prop pillows between his side and the wheelchair.

He has a living will and does not want a feeding tube.

Is this the end? How do most LBD patients end up dying? In their sleep? How long does someone in general have if they stop eating? We might have to give him IV fluids. Should we even do that? I wish he could tell us whether he wants to die. He's always agonizing, making a grimace with his face. When his eyes are open they don't shift. He just stares and we don't know if he is really seeing what is in front of him.

We know he can understand things, though, because last night when the nurse mentioned that hospice was arriving soon, he heard the word hospice and let out a terrible moan. I am sure it was because he heard the word. Last week when he was more able to form a sentence here and there he told me, "I'm afraid of dying." We are in a stage now where we are telling him not to fear, that it's ok, he's going to see his mom on the other side, that death is nothing to fear... alternatedly with trying to get him to eat. I hate the amount of time I sit there telling him to eat. It's not working and it doesn't give him peace. Perhaps it's time to stop aggreseive feeding, and if he won't eat then just don't feed him.

Are IV fluids a normal thing in a nursing home when he stops drinking?

Emanuel


Fri Apr 13, 2012 8:42 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: My father is not eating now.
Feeding tubes are the method of choice to provide food and fluids to those who are no longer able to eat or drink due to neurological issues. As you have indicated, your father has stated he did not wish this type of intervention. You might want to watch this Hospice video called Gone from My Sight, about death and dying. http://www.youtube.com/watch?v=PPx-qpos57g.

_________________
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.


Fri Apr 13, 2012 9:20 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3402
Location: Vermont
Post Re: My father is not eating now.
Hi Emmanuel - It's really hard to see your LO in these final stages. Between his making an AD when he was presumably of sound mind, the grimacing, and the not eating, it seems like he is giving you a lot of signals about where he is headed and what he needs. The hospice people we had for my dad were very good, and the ALF nurses, telling our family about end of life behaviors, needs and abilities. According to the experts on death and dying, the body cannot process foods, drinks & medications like it used to. It is easier on the person to "go with the flow of nature" so to speak. If he is on hospice (is he now?) they will keep him comfortable but not force anything on him including food or drink. If you don't already have a person to talk with about this, it might be very helpful to you to get the support of a counselor or clergy person through this difficult time right away. Surround yourself with friends and family who can help you. Sending a big hug your way. 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.


Fri Apr 13, 2012 9:37 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: My father is not eating now.
Yes, Emanuel, your father is nearing the end. Once he stops taking in liquid entirely, then death usually comes in 7-10 days.

If he wouldn't want a feeding tube, then he wouldn't want IV hydration.

I think you should stop telling him to eat. Sit quietly with him. Say loving things. Assure him that you and other family members will be cared for when he's gone. Tell him he's been the best father a person could want.

Did you get that book "Final Gifts"? It would give you some guidance.

Also, the video by the "Gone from my Sight" booklet author that mockturtle mentioned is a good one. If you don't have the stomach or time to watch the video now, you might check out my notes from the online video. They are posted here:
http://forum.psp.org/viewtopic.php?f=2&t=8800


Fri Apr 13, 2012 10:49 am
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Joined: Tue Aug 30, 2011 1:36 pm
Posts: 48
Post Re: My father is not eating now.
Thinking of you, Emanuel, and hoping you all got some rest overnight. Others have given you good advice. I just wanted to offer hugs to you and your dad and all your family. Take care.

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Donna G, 52, helped Dad take care of Mom, who died at home surrounded by family in June 2012.


Sat Apr 14, 2012 7:48 am
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Joined: Mon Mar 21, 2011 11:26 pm
Posts: 49
Location: St Pete Beach, FL
Post Re: My father is not eating now.
Thank you everyone. My sister is flying down tomorrow so she doesn't miss him before he goes. They put him on oxygen last night after giving him an x-ray and discovering something with his heart. I just woke up and am heading to the nursing home now to find out more. Thanks again for all the blessings. I hope to see some of you at the LBD caregiver support group in San Mateo, CA on May 6th.

Emanuel


Sat Apr 14, 2012 8:48 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: My father is not eating now.
Emanuel, my thoughts and prayers are with you and your family,
God Bless,
Ger x

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


Sat Apr 14, 2012 11:39 am
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Joined: Mon Mar 21, 2011 11:26 pm
Posts: 49
Location: St Pete Beach, FL
Post Re: My father is not eating now.
Hi everyone. It's been three days and my father still hasn't eaten. He can't swallow at all now actually. My sister is here and we are both by his bedside during the day. We may begin a 24-7 vigil soon, probably not tonight but maybe in a few days.

They have discontinued his medication since he cannot swallow it anyway, and have prescribed rectal morphione (Roxanol) as comfort care.

He still recognizes us, and he still understands basic sentences and can even sometimes say "ok," "yes" and "no." When he is awake his arms are still in constant tremors. His hands now are curled up into fists and I've been opening/stretching his fingers a few times a day.

His breathing is very fast and shallow, and he is often coughing up phlem (or else it is saliva, I don't know). They are using a suction machine to get it out of his mouth, but they never seem to be able to get it all.

Thanks for listening. I'll give more updates here as my father's passing progresses. I think death is too hidden in our society. We should be able to talk more openly and freely about it.

Emanuel


Mon Apr 16, 2012 3:55 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: My father is not eating now.
Emanuel, you and your family are very much in my thoughts today as you go through what is a painful, if natural, part of life. I pray your father won't suffer and will soon be at peace.

_________________
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.


Mon Apr 16, 2012 4:03 pm
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Joined: Mon Feb 21, 2011 9:55 pm
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Post Re: My father is not eating now.
Emanuel, God bless you and your family and may he give you strength to carry you through this difficult time
Ger xxx

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


Mon Apr 16, 2012 4:09 pm
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Joined: Mon Mar 21, 2011 11:26 pm
Posts: 49
Location: St Pete Beach, FL
Post Re: My father is not eating now.
Thank you Mock and Ger. One quick clarification: The Roxanol is actually not rectal. They squirt it into his mouth and it absorbs that way.


Mon Apr 16, 2012 4:48 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: My father is not eating now.
Thinking about you and your family Emmanuel. Being with your dad now is what it's all about. Take care and I hope his suffering will soon be over. 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.


Mon Apr 16, 2012 6:04 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: My father is not eating now.
Emanuel,
Thanks for the update. I'm glad you clarified the Roxanol because I've only heard of it given sublingually.
Robin


Mon Apr 16, 2012 6:40 pm
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Joined: Mon Mar 21, 2011 11:26 pm
Posts: 49
Location: St Pete Beach, FL
Post Re: My father is not eating now.
Well my dad is hanging in there. He has a fighting spirit. It's now a week since he has had any food or liquids. His breathing is very rapid now. Yesterday evening he had his eyes open for an hour and a half straight, though we don't think he was actually seeing. We think he can hear us though... at least last night we believe he could. Not sure now, but we still talk to him just in case.


Fri Apr 20, 2012 10:40 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: My father is not eating now.
I think your being there and talking softly to him is the best thing you can do for him and for you at this time. When my mom was dying she was in a coma but I felt like she could hear us (or maybe it was just hoping she could hear us) so I asked for the drs. and nurses and family NOT to act as though she was dead or talk about her dying in her room. My cousin and I spent 24/7 with her and just held her hand and told her stories till the end. I rallied the whole family and closest friends to be with her her last night, and those closest stayed with her in her final hours. We had quiet moments and we told family stories. We'll never know, but I am hoping this was a comfortable way for her to die, given the circumstances.
Thinking about you all and know how hard it is going through this final passage. Big hug, 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.


Fri Apr 20, 2012 12:04 pm
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