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 Dad's rapid decline! 
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Joined: Sat Sep 11, 2010 6:25 am
Posts: 9
Post Re: Dad's rapid decline!
Shomy - I truly understand what you are going through. All health care professionals we came in contact with strongly discouraged a feeding tube for my mother but how do you not feed someone you love? Feeding is a fundamental act of love because it satisfies a physical need to stay alive and it brings pleasure. We (my five siblings and myself) opted for a feeding tube. Mom lived for two years with this tube. For us, Mom was able to walk with assistance to the bathroom, talk a bit and was very friendly and happy with her kids. She was definately suffering the ravages of this disease but we were managing. Mom then suffered a stroke/siezure and overnight we had to make this decision. Because we weren't sure if Mom had years of quality of life ahead we opted for the feeding tube. Earlier that week there was quality of life. Suddenly it was all in question. I can remember being called on the phone by a sibling when I was at work and tole "we have to make a decision about a feeding tube" and my response was immediate "we have to feed her!".

Mom passed away September 10th this year after two years of being bed-ridden (with a feeding tube) with 24 hour care at home. I think if you asked each sibling if Mom should have had the feeding tube three would say no, it would have been kinder to let her go and three would say yes because we did share some extra time with Mom and we were able to care for her and love her while here on earth.

My point is - there is no right or wrong. Any decision you make will be the right one. If you decide no feeding tube then there is no question you will save your loved one some suffering. If you decide you want a feeding tube then know that when the body shuts down even with a feeding tube it won't take nutrition. I think the decision would have been easier to make if Mom were not communicative or mobile before her stroke/seizure. With or without a feeding tube you question your decision. Focus on making it with love and complete regard for the ill person and you will live comfortably with it.

I can remember my step-sister deciding not to feed her father who was dying of cancer. At the time I thought it was the cruelest thing I'd ever seen or heard of. Now I know it was the kindest thing and truly understand the personal agony she suffered in making that decision. You never know why people do what they do unless you walk a mile in their shoes. On another note, my heartfelt belief is that my mother would have wanted a feeding tube when the decision was made. I think a year later she would have regretted that decision.

Know that whatever decision you make you are making it with love in your heart. Also know that this disease does not get better and when they begin their decline it is a horrible decent to witness. Only you can know in your heart what your parent would want and only you know if there is quality of life present. You'll do the right thing - I am confident of it. My thoughts and prayers are with you.


Mon Nov 29, 2010 11:31 am
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Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
Post Re: Dad's rapid decline!
Dear Vicabn,
Thank you for sharing your experiences with the feeding tube. I really appreciate it because so far, you are the only one I have encountered on this forum who has had the feeding tube installed for a LO. Your points were very clear and very wise.
I have read some of your other posts on this forum regarding other issues and in all of them, your pure love for your dear mother can be clearly evinced from your eloquent words. I know that in many ways you are still grieving for your loss and I want you to know that I share in your pain and will keep you in my prayers so that in time this pain will be diminished and that you will feel your mother's beautiful soul close to you free of all earthly sufferings.
Shomy.


Mon Nov 29, 2010 11:49 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Dad's rapid decline!
One feature of end of life care is the spiritual dimension. At one time, it was a very important part of Hospice to know the patient's beliefs, freely discuss them and direct care along those lines. While this is not the place for an involved theological discussion, it should be pointed out that it makes a difference if we believe our spirits will be freed from the suffering of the body and that we shall be in a place where there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain and whether or not we shall see our loved ones again. Just a thought.

_________________
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 Nov 29, 2010 12:51 pm
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Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
Post Re: Dad's rapid decline!
Dear Mockturtule,
I agree totally: there cannot be any meaningful consideration of end of life care without taking into account the personal and religious beliefs of the patient and the family.
After all, how we view death is an integral part of our approach towards bringing comfort and care to our LO's.
Thankfully, my father (as well as myself and my sister) has always firmly believed that our physical life is a process of spiritual preparation for the progress of our souls which after death, free of all earthly limits will continue to wing its flight in worlds which we mere mortals cannot fully comprehend. And that there will always remain a firm connection between the souls who were connected on this earth by bonds of love.
I am relieved to know for certain that my father has always firmly believed in this out of pure reasoning and of conviction of faith, and not just because it would bring relief to the issue of death.
However, my biggest fear and perplexity in all this is that I don't want to be the active instrument of deciding when his life should end. It seems to me that any decision we make regarding his current and future care will have exactly such an impact which I am trying to avoid.
I have to dig deep into my soul and pray and meditate so that I will be given the courage of my convictions to face these imminent decisions.
Shomy


Tue Nov 30, 2010 6:03 am
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Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
Post Re: Dad's rapid decline!
I have been going over as many posts on this forum (all subjects) as possible, trying to find just one other case in which an LBD patient had or has my dad's very unusual symptom of not being able to open his mouth!

Has any of you heard of this happening? This is not just for idle curiosity. I need to know more about this specific problem because it helps me in making my decision about Dad's feeding and weight loss issues.

To be more specific: He cannot open his mouth to take in food. When my sister sticks her little pinky (gloved) in the corner of his mouth, she manages to pry his lips open. At that point he opens up and she can put food in his mouth. Then sometimes he cannot make his mouth to close! And then we still have the swallowing and choking problems to deal with as usual. But the point is that if we can get the food into his mouth, he eats anything we can give him. The staff at the nursing home refuse to do this and we cannot persuade any private caregiver to do it either. So basically he gets food only when my sister goes to feed him on her days off (2 or 3 days a week).

I repeat my question: Has any of you ever heard of this "locked-jaw" problem?

It is very hard to decide whether we should just give up on feeding him this way and let the chips fall where they may, or whether we should try to find a way of feeding him more efficiently (even through a much-dreaded feeding tube). We are waiting for palliative care assessment. I also worry about how they would feel about our current feeding method....
Shomy.


Thu Dec 02, 2010 10:17 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Dad's rapid decline!
Hospice recommends not encouraging eating. Perhaps the closed jaw is an indication that food is no longer needed or wanted and he is trying to please you by accepting it.

From this site: http://www.hospicenet.org/html/preparing_for.html is this paragraph:

"When the person may want little or no fluid or food, this may indicate readiness for the final shut down. Do not try to force food or fluid. You may help your loved one by giving permission to let go whenever he or she is ready. At the same time affirm the person's ongoing value to you and the good you will carry forward into your life that you received from him or her."

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


Thu Dec 02, 2010 11:03 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Dad's rapid decline!
Many in our local support group have what seems to be a locked-jaw. Most caregivers try for a while to pry the mouth open. Some resort to syringe feeding if the can get the lips/teeth open just enough for a plastic syringe tip to get in. Everyone stops doing this at some point because they decide that really the person doesn't want to eat.


Thu Dec 02, 2010 11:08 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Dad's rapid decline!
Please don't take offense at this, as none is meant. I'm trying to imagine if it were me in this position: I've got my mouth closed because I don't want any food but someone pries my mouth open and pours food into it. I have no option but to swallow it or choke, as I lack the ability to spit it out. Maybe this is not how your dad feels at all, and I'm not trying to make you feel bad, but it's worth thinking about. Please believe me, I care so much, and am not trying to be hurtful! God bless you and give you His wisdom.

_________________
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 Dec 02, 2010 11:46 am
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Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
Post Re: Dad's rapid decline!
I have also wondered often whether he really wants food or not. My sister who feeds him is adamant that he is always hungry and thirsty and that when she manages to get the food into his mouth, he eats it willingly. I will be there in about two and a half weeks and hopefully will be able to judge this issue.

Dear Mockturtule, as I mentioned in an earlier post, I would never take offence at anything any of you could say. I appreciate all your comments and want you to feel free to give me your honest opinions. We're all in the same boat and I consider you all an integral part of my support structure, and thank you for all your help and understanding.

Shomy.


Fri Dec 03, 2010 5:32 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Dad's rapid decline!
Meeting with a hospice nurse and getting the hospice philosophy about feeding people who are getting towards end of life. For months I was telling the caregivers of my dad not to force feed him, but they'd insist that he needed to eat. He was approaching end of life and may not have suffered so long if he'd just been allowed to not have to try to eat. I do think he was eating/drinking sometimes because WE expected him to do it, not because he wanted or needed it. I too would be pretty freaked out if my mouth were pried open and I was choking or aspirating food and drink. I'm sure you'll be glad when you get back and can see for yourself what's going on. Let us know, and we'll be thinking about you. 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 Dec 03, 2010 11:55 pm
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