In this article:
Other groups and organizations that can help
Websites to help coordinate care
Geriatric mental health resources
Recommendations for medical alert buttons
Recommended books about aging and end-of-life care
Further reading from around the web about aging and end-of-life care
PSP resources:
Join the PSP tough stuff group "Aging Parents" to talk and share experiences with members going though the same things you are. Not a member of PSP? Click HERE to sign up. Already a member? Head HERE to access the PSP Aging Parents group.
Other groups and organizations that can help:
ReServe, Inc. is for "continuing professionals" who are looking for something to do part-time.
Community Service Society of NY (CSSNY) offers a retired senior volunteer program where they interview the senior to try and match them with the right volunteer situation.
Heights and Hills (H&H) promotes successful aging in the community. We believe that every older adult needs financial and food security, access to health care, a safe, affordable, and comfortable place to live, the ability to meet basic tasks of daily life, and social supports to prevent isolation which is linked to improved health, satisfaction, and longevity. Our services include social services for homebound older adults, caregiver support for families and friends, volunteer programs that engage the larger community, and the Park Slope Center for Successful Aging, a neighborhood hub for active older adults. Schedule of workshops, support groups, and classes are on the website www.heightsandhills.org and the agency’s social media account.
Kings Bay Y at Windsor Terrace has an outreach program to help senior citizens.
Age in Place has chapters across the country and offers events and practical advice for seniors.
Websites to help coordinate care:
What members are saying: "There is something called a geriatric care manager. They have an association. This website lets you search for companies/people by state and city. We had one for my mother-in-law in Michigan when she was living alone in her house and one in Scottsdale for her selection of/transition to assisted living. A geriatric care manager is the person (usually a registered nurse) who coordinates all the home care services and doctors and medications, is familiar with local providers and institutions, goes to all her doctor appointments armed with her medical history, and manages any health crises as they arise. They then can email status updates to the adult children who live far away. They can manage on-going health issues as well as short-term transitions in living situation and should know all the adult living options in their cities."
What members are saying: "Here you will find comprehensive tools, resources, and content to help adult children coordinate care for parents who have been diagnosed with chronic illnesses."
Love & Order - Offering services that strive to ensure family relationships aren’t consumed by the increasing complexity of managing personal finances, household responsibilities, downsizing, and the other administrivia of life.
Go Wish - A card game that can help you talk to loved ones about what's most important to them and how to provide the best care for them later in life.
AARP worksheet to help organize documents and important information at the end of life.
Geriatric mental health resources:
Geriatric Mental Health Alliance of New York
Bereavement Services at Calvary Hospital
To set up an intake, call (646) 739-1005
This group is facilitated by Maria Georgopoulos, Director of Bereavement Services at Calvary Hospital.
Mount Sinai Division of Geriatric Medicine and Psychiatry
NewYork-Presbyterian Allen Hospital Geriatric Medicine & Aging
New-York Presbyterian Geriatric Psychiatry
Mark R. Nathanson, MD, Geriatric Psychiatrist: This email address is being protected from spambots. You need JavaScript enabled to view it.
Dr. Nathanson lives in Brooklyn and can do consults for families about their aging parents or speak directly with their aging parents if they want a psychiatric opinion.
Hospice services:
Metropolitan Jewish Health System, Inc. (MJHS)
What members are saying: "I had a perfect experience for most of last year with MJHS Home Hospice. They set you up with medications, oxygen, a doctor, nursing care, and a social worker...ALL of whom were brilliant at their jobs and beautiful human beings. They're extremely responsive on a 24/7 basis and were fantastically supportive in what was a scary, draining, and emotionally harrowing time. They made it as easy as possible for us to care for my mother at home -- and to care for her really, really well.
If you and your father wish to have home hospice I highly recommend MJHS. My mother and I loved them."
Menorah Center for Rehabilitation and Nursing Care (MJHS)
What members are saying: "Everybody always wants to go to Calvary but Menorah is also very very good."
What members are saying: "My father, uncle, and four (yes, four) dear friends spent their final months/days at Calvary Hospital and Hospice in the Bronx. The experience at Calvary was just as perfect, in its own way. It is staffed with angelic people who could not be more sensitive nor make dying a more dignified experience. My husband and I actually got married in the chapel of Calvary Hospice....my dad was there with us and it was beautiful."
"We had an excellent experience with Cavalry for in-home hospice. Hospice supports not just the patient but also the family as much as needed, which I appreciated."
"Calvary is excellent. It is providing some peace."
Thoughts on choosing between in-home and in-patient hospice:
"It is a difficult choice as between home hospice and in-patient hospice, but I don't think there is a "better" choice. It depends on your family's circumstances, the level of illness, and your and your dad's personal desires. The only downside for Calvary is that it's so far from Brooklyn and the travel to and from the Bronx was hard. That said, there's a Calvary outpost in Brooklyn that I've never been to. It's small and harder to get into and I have no personal experience there. I tried to get my uncle into it but there was no space, so we took him to the Bronx.
Whichever hospice route you choose you will be in good hands. Neither way is easy, but both ways are easier than going it alone."
Support for caregivers during hospice:
"Therapy was so important for me to get through. If you aren't getting that emotional support already you might want to reach out to Heights and Hills as I hear they have excellent services for caregivers."
Rehab facilities:
What members are saying: "Burke Rehab white plains is wonderful. My mom was there for a hip fracture recovery. Highly recommended!"
"Burke is excellent and the campus is like being at college."
What members are saying: "My FIL received excellent care at a place in NJ called Care One."
NYC Health + Hospitals/Gotham Health, Gouverneur
What members are saying: "My mom did short term rehab (and transitioned to nursing care) at Gouverneur Health in downtown Manhattan. The rehab is excellent and outsourced to NYU and the facility is very nice too."
Haym Salomon Home for Nursing & Rehabilitation
Menorah Center for Rehabilitation and Nursing Care (MJHS)
Recommendations for medical alert buttons:
What members are saying: "We use a company called Life Alert. It's affordable, and in addition to the necklace, a caretaker may press the call button for help from the base in their kitchen. My mom has found this helpful in the moment, especially when my dad has taken the necklace off. I have always received multiple, timely phone calls about emergency services being dispatched to their home, details about what happened, and the hospital to which he is en route. I don't have another service to compare it to, but we have been using them for almost 5 years now and are satisfied. We've (unfortunately) had to use it many times."
"We use LifeAlert. They do require a multi year commitment breakable only if the user goes into a full time nursing care facility or dies, which is a bit aggravating. That said, it works well and they have a remote device that works away from the home if you need it."
What members are saying: "My father-in-law uses an ADT Medic-Alert system and he says it's awesome. I concur as he's had some false alarms and they have been ridiculously responsive and on-the-ball. He wears the button on a chain around his neck - it is always on him. Once night, when he was getting ice cream out of the freezer, he pressed the cold pint to his chest and inadvertently pushed the alarm button. He was in his room eating ice cream when he heard voices in the house. He discovered two police officers in his living room! Turns out they had rung his bell but he's so deaf he couldn't hear the bell - or his TV was on too loud. ADT guided them to the secret hiding place for his spare key, they opened the door (expecting to find him dead or in a very bad situation) and discovered him in his undies with a bowl of ice cream!
There's not much that's funny about aging but we try to all laugh together as much as possible. This story is one of our faves. He's had a few more of these false alarms and they've been just as responsive. I'm on the call list for ADT and I was traveling out of the country when this happened. The minute I stepped off the plane and allowed my phone to receive calls, I found I had 4 messages from ADT just making sure that I knew what was happening and then how it was resolved.
So, big thumbs up for ADT!"
"We went with Phillips and I was pleased with the service. I also have a story. Nervous I upgraded my 88-year-old dad's basic service to the level that 'can automatically detect falls in the home.' This was a mistake. It was very sensitive and go off easily. Once he was showering and apparently bent over (not that he was remotely flexible, so I'm not sure exactly how it happened) and the system was triggered. He tended to take showers with the am radio blaring and did not hear the firemen at his door who had immediately responded to the alarm. They could not find the hidden key and broke his door down. My dad finally came to the door, naked, when he heard shouting. He seemed to take it in stride, mentioned that the fireman asked him to 'put some shorts on.' Phillips paid for a new door and I downgraded him to basic. It was fine for his needs."
"We have used Bay Alarm Medical, and have had good experience with them. They have the lockbox feature."
One additional thought on the medical alert button: "Please make sure those wearing them feel comfortable using it and do use it when they need to. My grandmother, who lives with my parents, now wears one around her neck. One night she apparently fell asleep and slid out of her lift recliner chair and spent all night on the floor. She was very reluctant to wear the button, another freedom that is gone - no driving, living with her daughter, now this!, and was very sore after sleeping on the floor all night. Hate to say 'lesson learned the hard way,' but she did finally agree to wear it all the time afterwards. Stubborn!"
Recommended books about aging and end-of-life care:
Being Mortal: Medicine and What Matters in the End, by Atul Gawande
What members are saying: "I recommend Being Mortal: Medicine and What Matters in the End, by Atul Gawande. The central thesis of the book is that the experience of the end of life has been problematized and addressed by medical models that place extending life over quality of life and institutional frameworks that place safety and efficiency over the ability for people to have autonomy over the last part of their lives. Reading this book helped my mother change her final wishes from basically keep me plugged in and throw every medical intervention at me to let me die naturally."
5@55: The 5 Essential Documents you Need By Age 55
Can't We Talk about Something More Pleasant?: A Memoir, by Roz Chast
What members are saying: "Chast's description of how her parents' decline -- from how she first started to realize they were not doing well on their own, to finding out well after the fact that her mother was bedridden after having fallen from a precarious step-stool trying foolishly to to reach the top shelf of a closet, to her mother's final stay in a nursing home-- really resonated, including her guilty realization of her own concerns about the costs involved.
I was a bit surprised to find that the book was part-comic-strip, with all the key events illustrated by Chast. But the comics did not detract from the autobiographical text. A warning: the book is downbeat and rather harrowing in its description of Chast's mother's final days. On the other hand, Chast's description of her parents really illuminates how the characters in her comics took form. Her father really did seem to be the prototype for the timid middle-aged NYC men she draws, for example."
How to Say It® to Seniors: Closing the Communication Gap with Our Elders, by David Solie - A practical guide to bridging the generation gap.
Further reading from around the web about aging and end-of-life care:
Do Not Adjust Your Screen or Sound - An article on healing an estranged relationship between a daughter and her aging father.
When Adult Children Become Financial Caregivers
A Life Worth Ending - The era of medical miracles has created a new phase of aging, as far from living as it is from dying. A son’s plea to let his mother go.
Aging with Dignity: 5 Wishes - "I like this document for plans about care at the end of life. It moves beyond health care proxies and includes what people really WANT in their last days. Who to care for them, medical treatment, comfort levels, and others. It’s certainly not an easy discussion to have."
Because of You Guys, I’m Stuck in My Room - Residents and caregivers at senior living facilities write about life during the pandemic — and trying to stay safe while facing the challenges of long-term isolation.
Dear Annie: Finding beauty in the ugly part of aging
What If We Treated Death Like Birth?
What to Say to Your Parent When They’re Dying - "I know [my parents are] not immortal, so I'm also trying to prepare myself and my family for the unwelcome future. I'm storing this article in my folder - I think it's important."
Information on Therapeutic Lying, the idea that telling the truth can be less than optimal when dealing with folks who have dementia/memory less, especially if it may bring them distress:
-Therapeutic Lying and Why Caregivers Do It - "Instead of making someone with memory loss live in a cycle of constant trauma, caregivers use therapeutic lying to absolve them of unnecessary stress-inducing experiences, which can result in a more peaceful and stable life."
-Therapeutic Fibbing: Why Experts Recommend Lying to Someone with Dementia
-Why and How to Avoid Therapeutic Lying to People with Memory Loss - offers a “Validation Method” as an alternative—you don’t lie, but you don’t tell them the truth.
