Perhaps the most difficult question a family member can be asked:
"Do you want us to do procedures that may well be painful and will not improve her quality of life? Or do you want us to let her go in peace?”
An article in the Washington Post by ER Doctor Geoffrey Hosta, titled "Doctors are Torturing Dementia Patient At the End of Their Lives -- And it is Totally Unnecessary" is a tough read, but one a caregiver should consider.
https://www.washingtonpost.com/opinions/2019/11/28/doctors-are-torturing-dementia-patients-end-their-life-its-totally-unnecessary.
Interesting article on making your will at home from Next Avenue : https://www.nextavenue.org/draft-will-electronically-at-home/?fbclid=IwAR3Q852twn_VH1x4jvNwJ_qpacZOjty6s_Bi1RYqR-fl-uRoLV-ccYL5uGM
File of Life offers a way to keep medical information posted on a refrigerator or other metal surface - other ideas are also available on their website: www.folife.org/
Emergency Paperwork - Make packets to include essential info, such as:
"Do you want us to do procedures that may well be painful and will not improve her quality of life? Or do you want us to let her go in peace?”
An article in the Washington Post by ER Doctor Geoffrey Hosta, titled "Doctors are Torturing Dementia Patient At the End of Their Lives -- And it is Totally Unnecessary" is a tough read, but one a caregiver should consider.
https://www.washingtonpost.com/opinions/2019/11/28/doctors-are-torturing-dementia-patients-end-their-life-its-totally-unnecessary.
Interesting article on making your will at home from Next Avenue : https://www.nextavenue.org/draft-will-electronically-at-home/?fbclid=IwAR3Q852twn_VH1x4jvNwJ_qpacZOjty6s_Bi1RYqR-fl-uRoLV-ccYL5uGM
File of Life offers a way to keep medical information posted on a refrigerator or other metal surface - other ideas are also available on their website: www.folife.org/
Emergency Paperwork - Make packets to include essential info, such as:
- Elder's Date of Birth
- Social Security Number
- List of Medications
- Copy of Insurance Cards
- Combined Health Instructions
- Power of Attorney*
- Your contact info - cell phone, etc.
*YOW - Some institutions are not accepting general Power of Attorney documents!
Read NYT article here: http://nyti.ms/1UEcN8Q
Just say "NO" to Feeding Tubes. Prevailing wisdom says they do little to improve, or prolong, lives of people with Dementia. Best to have a conversation ahead. I had experience with feeding tubes with my brother, who was total care for 13 years, and agree with the points in the article. I also stopped giving my Mom Ensure when she was home on hospice and in her final stages; I understand some clinicians consider such fluids as liquid feeding tubes. I realized I was prolonging her life without benefit. See the NYT article here: http://nyti.ms/2bwEotB
Another advanced directive issue for people with dementia involves being fed by hand, when they explicitly did not want feeding tubes. Here is a new term: VSED - Voluntarily Stopping Eating and Drinking. Right-to-die groups in some progressive states are looking to develop special advanced directive forms to prohibit prolonging life through having nursing staffs offer food and drink - the theory is that the patient may participate due to life-long habits, vs. wishing to continue getting nourishment. One family lost a court case when they tried to get staff to discontinue hand feeding. Very difficult subject, but necessary to contemplate. There are examples of patients who choose VSED, as a way to end their life without a court battle. But that requires clear thinking, vs. dementia.
Read NYT article here: http://nyti.ms/1UEcN8Q
Just say "NO" to Feeding Tubes. Prevailing wisdom says they do little to improve, or prolong, lives of people with Dementia. Best to have a conversation ahead. I had experience with feeding tubes with my brother, who was total care for 13 years, and agree with the points in the article. I also stopped giving my Mom Ensure when she was home on hospice and in her final stages; I understand some clinicians consider such fluids as liquid feeding tubes. I realized I was prolonging her life without benefit. See the NYT article here: http://nyti.ms/2bwEotB
Another advanced directive issue for people with dementia involves being fed by hand, when they explicitly did not want feeding tubes. Here is a new term: VSED - Voluntarily Stopping Eating and Drinking. Right-to-die groups in some progressive states are looking to develop special advanced directive forms to prohibit prolonging life through having nursing staffs offer food and drink - the theory is that the patient may participate due to life-long habits, vs. wishing to continue getting nourishment. One family lost a court case when they tried to get staff to discontinue hand feeding. Very difficult subject, but necessary to contemplate. There are examples of patients who choose VSED, as a way to end their life without a court battle. But that requires clear thinking, vs. dementia.
http://nyti.ms/18Hg8hP -
Read this revealing NYT article about how often times putting final wishes in writing does not get to the right people, when needed most!
http://nyti.ms/1ep2e7g Read the full article by clicking on this link.
After caring for, and losing my parents, I am sensitive to how friends are patching together care for their elderly parents that still live at home. One 86-year old friend of my Mom's talked about driving her 90 year-old husband to a large healthcare facility that has poor parking and long hallways. Both of these fine people have trouble walking. Another woman in her '80s is scheduled for a procedure that will required at least 2 weeks recovery - her husband is failing and does not get out of bed some days. When asked who will help during the recovery period, a daughter said "oh, I think she will do fine." I think we "children" in our '60s, most of whom are still working, cannot confront the issues that elder parents face daily. And they, themselves, put up a brave front. Very difficult.
After caring for, and losing my parents, I am sensitive to how friends are patching together care for their elderly parents that still live at home. One 86-year old friend of my Mom's talked about driving her 90 year-old husband to a large healthcare facility that has poor parking and long hallways. Both of these fine people have trouble walking. Another woman in her '80s is scheduled for a procedure that will required at least 2 weeks recovery - her husband is failing and does not get out of bed some days. When asked who will help during the recovery period, a daughter said "oh, I think she will do fine." I think we "children" in our '60s, most of whom are still working, cannot confront the issues that elder parents face daily. And they, themselves, put up a brave front. Very difficult.
Falls are inevitable as we age, and often the elder lands in the hospital -- sometimes never to return home. If you are lucky enough to avoid spending many hours in the hallway of an ER, here are some caregiving lessons and ideas:
Things to have ahead of time:
Pain patches for bruises - they come in various sizes; some are icy-hot.
A commode to place near the bed to minimize night-time trips. There are colorful, stretchy, washable seat covers that help keep a room cozy looking. Use an odor-blocker, such as 'Fresh Drops'.
A wheelchair that can pass through the home's doorways - we use one that is portable and can be folded.
Flexible straws to help the elder take pills in bed. If your elder has swallowing issue, the straws may not be a good idea, as they can deliver the liquid too fast.
Extra hygiene products, including hand sanitizer, Lysol wipes, odor-fighting plastic bags, etc. Visit the scary aisle at your pharmacy and toss in more than you think you need.
A couple of things I did after my Mom took a very bad fall:
Slept on her couch for 10 nights (I live right in front of her).
Put windchimes on her wheelchair so I could hear if she was up (hard-won lesson -- she fell, AGAIN, while I was 15 feet away, dead to the world).
Got more help in - established a "new normal" - even though she soon forgot she fell and wondered what all the fuss what about "I am not an invalid."
Watched a movie every night on her Comcast account - something for me!
Things to have ahead of time:
Pain patches for bruises - they come in various sizes; some are icy-hot.
A commode to place near the bed to minimize night-time trips. There are colorful, stretchy, washable seat covers that help keep a room cozy looking. Use an odor-blocker, such as 'Fresh Drops'.
A wheelchair that can pass through the home's doorways - we use one that is portable and can be folded.
Flexible straws to help the elder take pills in bed. If your elder has swallowing issue, the straws may not be a good idea, as they can deliver the liquid too fast.
Extra hygiene products, including hand sanitizer, Lysol wipes, odor-fighting plastic bags, etc. Visit the scary aisle at your pharmacy and toss in more than you think you need.
A couple of things I did after my Mom took a very bad fall:
Slept on her couch for 10 nights (I live right in front of her).
Put windchimes on her wheelchair so I could hear if she was up (hard-won lesson -- she fell, AGAIN, while I was 15 feet away, dead to the world).
Got more help in - established a "new normal" - even though she soon forgot she fell and wondered what all the fuss what about "I am not an invalid."
Watched a movie every night on her Comcast account - something for me!
