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By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington. Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services. APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid. We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour. APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment. You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints. Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights. APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.I agree that: A.I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information"). B.APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink. C.APFM may send all communications to me electronically via e-mail or by access to an APFM web site. D.If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records. E.This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year. F.You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
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Mostly Independent
Your loved one may not require home care or assisted living services at this time. However, continue to monitor their condition for changes and consider occasional in-home care services for help as needed.
Remember, this assessment is not a substitute for professional advice.
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As others have already said, have a discussion with the doctor as well as the speech pathologist and hear both sides. Also include any other professionals who were involved in the issue that led to the jtube.
My husband has had a PEG tube since 2016 due to swallowing issues related to Parkinson's. I was advised by a good friend to never remove it. Her husband had one and once he was eating comfortably, he insisted on having his removed. Sometime later he was back in the hospital for another issue and was unable to swallow his Parkinson's medicines. He was too weak to undergo the procedure to reinsert the tube. Had the tube still been in place he would have been more comfortable without needing IV drugs to sedate him.
My husband is able to eat a modified soft diet and probably would be fine without the tube. I continue to use it for his medicines and one meal a day because it helps assure he is getting better nutrition and hydration. This way, should he have a separate issue requiring hospitalization we don't have to worry about struggle to eat or receive all of his medication. As long as I flush it once or twice a day, he doesn't have to use it at all.
Another issue is when the tube of another friend's husband fell out, the providers refused to put it back in. The reason was in his Living Will he made several years ago he signed he did not want a feeding tube and it had never been updated. They had it for a few years and he was not in an active dying situation even though he was now in Hospice. This meant she had to manually prepare all his food and hand feed him for months taking an hour for each meal rather than 15 minutes. Check the wording on your Living Will. I made sure ours says what we prefer but our agent has the ability to use their best judgement. If his comes out, I want to be sure my hands are never tied in making the best decision.
I totally agree that when a patient is actively dying, a feeding tube should not be used even if it is already in place... because the body is shutting down and food/water only adds to the discomfort when it can not be digested properly. However, in both cases the patients were not to that stage yet.
Note: Feeding tubes often deteriorate and often fall out after about a year, but can be replaced very easily if done soon after it comes out! It is only after it is left out too long that it has to be reinserted surgically.
Removing a J-tube is a very simple procedure that needs to be done by a physician or nurse practitioner. It is perfectly safe for it to be removed, just have to follow the correct steps.
Ditto to asking your medical folks. But wanted to say congrats on being able to get all your calories by mouth and keeping the weight on! So happy for you!! I have read that once you are getting at least 3/4 of calories by mouth and supplement with Boost or nutrition drink you can consider having it removed.
If you feel confident in your swallow I would definitely have the conversation with your doctor, GI, and/or dietician.
My mom is having a tough time transitioning back from tube to food. May I ask did you experience any nausea when going back to food by mouth? My mom has. She reduced from 4 to 3x per day by formula and we are working toward 2x but it's been hard. She especially got used to taking her medicine via tube. I've been encouraging her to eat even if only a little bit sporadically throughout the day to keep the hunger trigger and swallow reflexes going. Any tips for a smooth transition? I don't want to rush her but don't want her to get "stuck" either.
Then again, my dad is now recovering from spine surgery so focus has shifted to that AND they are involuntarily moving at the same time (water damage from frozen pipes...)
If you haven't used this for three months I am surprised this issue wasn't taken up with your doctor. We cannot know your medical condition with all of its individual idiosyncrasies, so this is a question only you and your doctor can decided together. It sounds as though you are doing well. I am happy to hear that and wish you luck.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
My husband has had a PEG tube since 2016 due to swallowing issues related to Parkinson's. I was advised by a good friend to never remove it. Her husband had one and once he was eating comfortably, he insisted on having his removed. Sometime later he was back in the hospital for another issue and was unable to swallow his Parkinson's medicines. He was too weak to undergo the procedure to reinsert the tube. Had the tube still been in place he would have been more comfortable without needing IV drugs to sedate him.
My husband is able to eat a modified soft diet and probably would be fine without the tube. I continue to use it for his medicines and one meal a day because it helps assure he is getting better nutrition and hydration. This way, should he have a separate issue requiring hospitalization we don't have to worry about struggle to eat or receive all of his medication. As long as I flush it once or twice a day, he doesn't have to use it at all.
Another issue is when the tube of another friend's husband fell out, the providers refused to put it back in. The reason was in his Living Will he made several years ago he signed he did not want a feeding tube and it had never been updated. They had it for a few years and he was not in an active dying situation even though he was now in Hospice. This meant she had to manually prepare all his food and hand feed him for months taking an hour for each meal rather than 15 minutes. Check the wording on your Living Will. I made sure ours says what we prefer but our agent has the ability to use their best judgement. If his comes out, I want to be sure my hands are never tied in making the best decision.
I totally agree that when a patient is actively dying, a feeding tube should not be used even if it is already in place... because the body is shutting down and food/water only adds to the discomfort when it can not be digested properly. However, in both cases the patients were not to that stage yet.
Note: Feeding tubes often deteriorate and often fall out after about a year, but can be replaced very easily if done soon after it comes out! It is only after it is left out too long that it has to be reinserted surgically.
If you feel confident in your swallow I would definitely have the conversation with your doctor, GI, and/or dietician.
My mom is having a tough time transitioning back from tube to food. May I ask did you experience any nausea when going back to food by mouth? My mom has. She reduced from 4 to 3x per day by formula and we are working toward 2x but it's been hard. She especially got used to taking her medicine via tube. I've been encouraging her to eat even if only a little bit sporadically throughout the day to keep the hunger trigger and swallow reflexes going. Any tips for a smooth transition? I don't want to rush her but don't want her to get "stuck" either.
Then again, my dad is now recovering from spine surgery so focus has shifted to that AND they are involuntarily moving at the same time (water damage from frozen pipes...)
Again, congratulations!!