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 In Need of Advice Concerning Feeding Tube 
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Joined: Mon Mar 07, 2011 11:30 pm
Posts: 5
Post In Need of Advice Concerning Feeding Tube
Hello Everyone,

Thank you to all who replied to my Introductory thread concerning my mother's LBD. I have a new situation to share and hope to get some worthy advice. My mother was discharged on Thursday, March 10th and transported to Premier formally Britthaven of Jacksonville. I visited every day after school (I am a teacher) and did not visit on Saturday until supper time because one of my other sisters told me that she would be there at 9:00 am. When I got there they had my mother sitting up in a chair and she was nonresponsive. She also had a rattling sound coming from her chest. I suspected pneumonia and asked a nurse to check her. The doctor was in so he came in and listened to her lungs. He said she did not have pneumonia but that he would have her sent to ER if I wanted. I discussed this with another one of my sisters and we decided to do that. EMS transported her and she was finally in an ER room by about 7:30 pm. Turns out she does not have pneumonia but a Pulmonary Embolism in her right lung instead. They also told us that her Calcium levels were high (15.6) indicative of a malignant tumor. She was moved into a room and given IV fluids along with antibiotics to fight the infection as her white blood cell count is also very high and she has been running a low grade fever. She has remained unresponsive only barely opening her eyes. She does make a noise almost like she is wailing from time to time. Sometimes we know she is in pain and other times we think that she may be trying to sing the scale. My mother used to be a singer, studied voice in school, and was a member of the Community College and Church Choir for most of her adult life. She has no advanced directive. I know. I tried to get her to take care of these matters when she was first diagnosed, but my father talked her out of it. Everyone was on board for no feeding tube until yesterday. My father keeps saying that if we can just get some nourishment into her. She can no longer swallow as I fear she aspirated Saturday as well. Her mouth stays open most of the time and we are trying to keep it moist with a swab. Yesterday my father announced that he wants her to have a feeding tube. My sisters and I have tried to explain to him that she would not want that and that a feeding tube is going to make no change in her condition. She still will not be able to swallow even if she does get stronger as this is part of the Lewy Body Demensia, not the embolism or possible cancer. I just received a text from my sister, as I decided to try to work today, and she said that he is planning to order the feeding tube as soon as he sees my mother's doctor. I have printed several online articles about feeding tubes, even one from the NC Catholic Diocese. I asked my sister to please beg him to wait until I get there so he can read some of these articles. I know he is trying to hang on. They will have been married 61 years in April, but I'm afraid he is going to make a decision that is going to prolong her suffering. Please advise.


Thu Mar 17, 2011 11:44 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: In Need of Advice Concerning Feeding Tube
Stephanie,

We see this a fair amount -- the well spouse can't let the sick spouse go and tries all sorts of treatment to keep the person alive. Did your mother write down her wishes? Is she able to communicate now?

If your mother wrote down her wishes, now would be a good time to pull them out and review them with family and the MD.

If she is unable to communicate now, your dad is empowered to make decisions on her behalf. Can you ask clergy at your parents' church to come visit your father in the hospital and discuss this decision?

I would encourage you to not have a direct confrontation with your father about this. That's my two cents...

I also encourage you to discuss brain donation with your father. Perhaps he can get the clergy's opinion on that as well.

Robin


Thu Mar 17, 2011 3:24 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: In Need of Advice Concerning Feeding Tube
Good advice from Robin. Except I would wait until the life-extension issues were resolved before bringing up the brain donation question. God bless!

_________________
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 6:59 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: In Need of Advice Concerning Feeding Tube
Oh, your poor dad! This must be a terrible situation to be in. He talked your mom out of a health care directive early on -- does this mean he is used to being in charge, used to taking care of her, used to being the one others rely on to know best? What a burden that is now. Is he acting out of deep-seated religious beliefs about the obligation to provide nutrition and hydration no matter what? Or is it more that he can't bear to let go? I guess his motivation might give you clues on how to approach him.

I too would avoid a confrontation with your dad over this.

One of the risks that most bothers me about feeding tubes in dementia patients is that they often try to pull them out (I've read) and that leads to restraints, either physical or pharmacuetical, which, to me, is a further lessening of the quality of life. Did any of the articles you printed mention this?

The outcome is going to be the same with or without feeding tubes. My goal would be to have my loved one die in as much peace and dignity as possible. Do what you can to influence your dad. But accept that ultimately it is not under your control. Do your best, and then don't beat yourself up. Go on loving both of your parents.

Hugs to you and to your sister -- and your dad and mom, too.

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


Thu Mar 17, 2011 9:40 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: In Need of Advice Concerning Feeding Tube
You might get an opportunity to show him this brief but direct article from the Mayo Clinic posted recently by dorthea:
http://lmweb.mayoclinic.com/t/1132683/1731135/6638/0/

_________________
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 9:55 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: In Need of Advice Concerning Feeding Tube
Hi - so sorry about this very tough situation. If you can get your dad to read postings, articles, etc. about "death with dignity" "slow medicine" - posted on this forum, among other places perhaps that might get him to think about this issue from another perspective.
I know what it's like when 2 spouses disagree with ADs, living wills, etc. My mom was in a coma, with all her legal documents in place. When she developed pulmonary emboli in both lungs and my dad called the ambulance, she was kept alive, against her previously stated wishes, on advanced life support. The drs. told us that the only way we could get her directive implemented was to take my dad to court. Yeah, right, like we could do that! Luckily, given her condition (no O2 for at least 20 min.) she died 4 days later. And, she would have been really upset to know it took that long to die without dignity, hooked up to all sorts of tubes, being given all sorts of drugs to speed up her heart, slow down her heart, then repeat the cycle hour after hour. I finally just said "no more" because my dad couldn't do it. She died within a few hours of my telling the drs. not to give her any more meds. They never took her off the breathing machines till after she died. She never wanted that, feeding tubes, etc.
What has your mom said prior to her illness about all these interventions that are used to keep people artificially alive?
Just my personal opinion, but I think issues about any organ donation would be the last thing I'd worry about at this point. All the best in navigating this very, very difficult decision. 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.


Thu Mar 17, 2011 10:19 pm
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Joined: Mon Mar 07, 2011 11:30 pm
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Post Re: In Need of Advice Concerning Feeding Tube
Thank you all for the wonderful advice. Some new developments. My mother had been hospitalized at Pitt Memorial from February 24 - March 10th. The doctors at Pitt Memorial never said anything about her high calcium levels. I know they were aware because the admitting ER doctor looked at her records from Pitt and told us that high calcium levels were noted in her discharge report. Yesterday I called my mother's neurologist in Greenville and spoke to his nurse. She looked up my mother's medical records from her hospital stay at Pitt Memorial and told me that they had conducted the "free light chain" test and that she tested positive for paraprotein disease sometimes better known as multiple myeloma. That explains the high calcium levels, high white blood cell count, and low grade fever. I immediately left work to go to the hospital to be with my sister and father who were pulling morning shift. When I walked into her hospital room my dad said to me, "I guess you won." He was referring to the feeding tube. I was speechless. I really didn't know what to say to that. None of us are winners in this situation especially not my mom. He did a lot of crying which was well overdue and then began to tell us stories of how they met and the first time he ever took her fishing with him. I think reality finally hit him smack in the face and he has no choice now but to deal with the inevitable. My mother is not able to talk and was not lucid when she last could talk. She opens her eyes every now and then, but they have started giving her morphine for the pain so she sleeps most of the time. She still knows we are there, but she looks much more peaceful as this must be helping to ease her pain. It is my understanding that with this type of cancer there is a lot of bone pain. My mother was the most beautiful person inside and out and I am going to miss her terribly. My father is not in good health and so after this is all over my sister and I will need to direct our attentions at taking care of him. He is not going to know what to do with himself. They will have been married 61 years on April 14th. My mother took care of my father. Even before she was hospitalized last month she still did her best to make his breakfast for him. My father just took over the finances within the past 6 months when it became apparent that she could not longer write or calculate. We are all going to be lost without her. As far as donating her brain for research, I would not even know how to approach him about that. He never truly understood her illness. My sisters and I did all of the research and carried her to all of her doctors appointments. He would not even dispence her meds. We had to set up a tray and fill it weekly. She probably would have donated her brain, but we never talked about it. We did talk about other things such as a living will. She made it quite clear to me and to my sisters, probably even to my father, that she did not want to be kept alive on life support. She has suffered so much these last few years. I pray every day for a merciful God who will lift her up and end her pain. As difficult as it may be to let her go, I will be relieved when she is at peace and among God's other angels singing in his choir in Heaven. Thank you to all who supported me and my family, though brief, I appreciate the plethora of knowledge you've shared with me. I only wish I had found this site earlier.


Fri Mar 18, 2011 8:44 am
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Post Re: In Need of Advice Concerning Feeding Tube
You and your family will be in my prayers. God bless you all and may He take her home soon.

_________________
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 Mar 18, 2011 8:55 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: In Need of Advice Concerning Feeding Tube
Will your mother remain at the hospital so that her pain can be closely managed? I hope your mother's passing is peaceful.

If she dies at the hospital, it's likely that the brain procurement could be done at the hospital's morgue. One way you could broach the brain donation subject with your father is if your mother is an organ donor on her driver's license. Another way is to ask what funeral home your father intends to use, and bring it up at that time as something that could be done before your mother is transported to the funeral home. A local support group member also with cancer died a couple of weeks ago; the family chose to have a body autopsy (to investigate the cancer) and to donate the brain.


Fri Mar 18, 2011 10:59 am
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Post Re: In Need of Advice Concerning Feeding Tube
Robin, I understand you make brain donation arrangements for Mayo. Would you mind telling us if you are compensated for this, or is it purely voluntary. Thank you.

_________________
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 Mar 18, 2011 11:33 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: In Need of Advice Concerning Feeding Tube
I will start a new post so as not to clutter this one.


Fri Mar 18, 2011 2:13 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: In Need of Advice Concerning Feeding Tube
I'm glad your mom seems more at peace with her pain alleviated by the meds. I felt the same way with my dad - the only time he looked peaceful in several years was when he started the morphine shortly before he died.
If your dad has had a hard time dealing with all the issues about your mom's illness, I wouldn't feel pressured to bring up brain donation with him at this time. He must be feeling very scared and very sad and if it were me, that would just add another unecessary layer of angst. Just my personal opinion and I know others don't feel this way, but I felt it needed to be said. Thinking of you and your family at such a difficult time, 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 Mar 18, 2011 9:56 pm
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Joined: Mon Mar 07, 2011 11:30 pm
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Post Re: In Need of Advice Concerning Feeding Tube
Thank you Lynn for the good advice. No, I am not going to bring up the brain donation topic with my father. Research will go on with or without my mother's brain. It would be different if this were something we had discussed before her health deteriorated and she had expressed a desire to make this donation, but that is not the case. She is still in the hospital. They told us we could stay, that they would not make us leave. My mother actually rallied on Friday. She opened her eyes and spoke to us. Sometimes we cannot understand what it is she is saying and she moans an awful lot. She is getting a small dose of morphine via IV about every hour, but fights to stay awake. She is still having hallucinations. Today she said quite clearly that she couldn't fight off 7 of us. I told her there were only 4 in the room and asked her who else was present. She never answered me. She said to my dad, "Do not let me die" but that is clearly out of our hands and we simply try to reassure her that we are all there for her and will not leave her. I did try to see if she would eat some applesauce. She had a tiny spoonful, swallowed it, but then clamped her mouth shut and would not take another bite. She tries so hard to communicate verbally, but most of the time we are not able to understand what she is saying. That has got to be frustrating for her. When she really concentrates she can be understood. She wants to go home and begs us to get her out of here. It is difficult at times to tell the difference between her delusional state of mind and her real pain level. We are only allowing family in to see her now. Some of her choir members came and sang to her. While it was very sweet, there were times when she was extremely upset by their presence and it takes a long time to get her to settle down when she gets like this. She does not want anyone to see her like this and I don't blame her. I wonder how much longer she can last like this? The doctor only gave her a few days, but she is a strong woman and seems to be hanging on for dear life. I even questioned our decision about the feeding tube today in a moment of weakness. It was right after she asked my dad not to let her die. A brief discussion with my sister helped me realize that she has way too many obstacles, but I must admit, it was much easier before she woke up and started talking to us. Please continue to pray for my mother, that God will end her suffering soon.


Sun Mar 20, 2011 6:31 pm
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Post Re: In Need of Advice Concerning Feeding Tube
I hope her passing is peaceful. And I hope your family can get some much-needed rest.


Sun Mar 20, 2011 6:55 pm
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Post Re: In Need of Advice Concerning Feeding Tube
You and your mother remain in my prayers. The survival instinct is strong and it often seems to override other considerations. Don't feel guilty about this. It sounds as if she has wonderful, loving support and everything possible is being done to make her passing a peaceful one. God bless!

_________________
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.


Sun Mar 20, 2011 7:06 pm
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