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Guests

is the creator of The New Old Age blog at The New York Times and author of A Bittersweet Season: Caring for Our Aging Parents — and Ourselves.

Pertinent Posts

As we focus increasingly on ourselves, who do we leave behind, abandon? Abraham Joshua Heschel's prescient words on aging and vanity from his essay "To Grow in Wisdom."

Selected Readings

Excerpt from: A Bittersweet Season

Read a selected passage from Jane Gross' memoir about lessons learned the hard way as she went through this life passage with her own mother.

Top 10 List of Caregiver Resources

Jane Gross recommends these ten organizations as invaluable set of resources for caregivers. Find a full list of recommendations in her book "A Bittersweet Season."

About the Image

Herbert Winokur, now deceased, sits in the kitchen of his daughter's home with his granddaughter Isabel in the background. Along with her husband (the photographer) and two children, Julie Winokur moved her husband and two children from San Francisco, CA to Montclair, NJ to help care for her father who suffered from dementia.

(photo: Ed Kashi/VII)

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62Reflections

Reflections

This interview with Jane Gross really hit home for me. My brother and I were in a very similar situation after our mother (widowed and thus reliant on us) suffered a major stroke and became bed-ridden. Gross' point is well taken that the dymanics of the family of origin re-institute themselves in these instances, but instead of it being an invitation to healing, it was for our family at least, the cause of division. Let me explain - the vast bulk of my mother's care fell to me, as my brother kept the entire situation at arm's length and had his wife fulfill his part (which was very little) in caring for my mother. After nearly a year of constant caregiving, I asked my brother and his wife if they would give me a weekend "off" and care for her. His reply was that they "spent weekends together, so that would be out of the question."

Eventually my mother died and our lives went back to our new normal, but my relationship with my only sibling has been forever changed. We rarely see one another although we live within a few miles of each other. Still, my mother and I did experience tremendous healing of our rather rocky relationship, mostly through hours of discussion about incidents that as a child I had misunderstood. Suffice to say that I wouldn't trade this difficult time for a moment, but it was a mixed bag of healing and hurts.

I am now 71, cared for my late husband through his years with dementia, and have made it very clear to my children that I will refuse all medical treatment aside from comfort measures. I know that many will disagree with this decision, but I can think of nothing worse for me than a prolongued death. Just keep me comfortable and let me go. I have also informed my primary care physician of my wishes, and drawn up the legal paperwork.

In terms of planning for the support of friends towards our own end of life, I just wanted to contribute a 2006 article from the "Seattle Times" which reflects hope for how some older friends there in the Northwest have organized to help one another:
http://seattletimes.nwsource.com/html/localnews/2002963885_elder27m.html

Does anyone know of any similar efforts anywhere? As a child of the sixties, commune-like planning and action with good friends still has its natural attraction.

In the conversation with Jane Gross, there was what I thought was a brief reference to Jane's having previously written on that same option of working together with friends. I thought Krista mentioned a 2004 NY Times article. Does anyone have any reference for that particular article?

Take care and hope.

Check out a fairly recent book
Aging Together: Dementia, Friendship, and Flourishing Communities by Susan H. McFadden and John T. McFadden (May 4, 2011)

Dear Krista,

My mind is racing with possablities. My mind seems to be grasping what is going on in this world. However,my body is gradually becoming less useful, no fatal diagnosis as yet; but many very debilating conditions that limit my capacity to function well. At 75 years of age, I realize that this body is slowly dieing and there is a time to die.

The main concern I have is to leave this World gracefully, without burdening my four adult children greatly. Hopefully, to keep good relationships with them as I depart.

Your conversation with Jane Gross today gave me much to reflect on. My firat inclination is to buy her book and try to use it as a bridge to conversations with each of my children regards my concerns. Both my girls have experienced canceer and chemotherpy recently, so they are facing their own mortality. One of my sons has Muscular dystrophy,which hit his heart, giving him Congestive Heart Failure. Now he has a pacemaker/defibrillator inbedded in his chest and is totally disabled. He is also facing his mortality. My other son is relatively healthy. Therefore, I have to be very careful how the subject of my death is approached. Their father died when when three of them were in their teens and the youngest was 11.

Thank you very much, Krista, for broadcasting this conversation this week. I heard the show today, 23 July 2011, on NHPR. Today is my 75th birthday and I consider your broadcast a gift from God.

God's blessings and peace be upon you and your guests.

Gratefully,
Joan C. Anderson

I am thinking how this discussion of the problems of aging leaves out entirely the chances (admittedly to many of us mysterious) of escape from the ravages of age, even reversal of some dire symptoms. See the testimonies of healing in Chrisian Science literature. For example: CS Journal, April, '96, and CS Sentinel, Feb '03. Also an account of an insane woman who never aged is in the book "Science & Health" by Mary Baker Eddy, p.245.) I am also thinking how powerful is love in a marriage of an aging couple. (Like that of the AIDS men)

I cared for both of my parents as they prepared to leave this world and to the end. I don't look at it as a burden, but as their final gift to me. The last chance I had to show them that all they taught me, had done for me and had hoped for me had meant something. That they had loved me and I them. I carry that love in my heart and hopefully share it daily with the family that is growing up with me as part of their elders. So don't assume your needs will be seen as a burden to your kids, regardless the challenges they face, but an opportunity to let them reflect back you all that you have given them. Best wishes.

I am a Hospice RN, and have been for the last 8 years, and before that I was in the hospital. I really enjoyed listening to the program on NPR. I often will have a patient who has no children to help make the last journey of their life easier to cope with. I also have patients whose children live in other parts of the country and cannot, or do not, visit very often. It is almost "out of sight, out of mind". Sometimes the distant child with exchange numerous phone calls to a nursing home, the Doctor or the Hospice nurse (if they are lucky enough to have one), trying to monitor and understand from a distance. I've been privy to these updates which can be to a Dr. who hasn't had eyes or hands on the patient in quite a while. Or to a nursing home nurse who is trying to make everything sound "just fine". Or when a patient has a decline or change in condition,and so the nursing home sends for the ambulance and off to ER the patient goes, then they call the distant family. Everyone needs an advocate during the final transition of life.

I see people hospitalized who are so obviously in the dying process, very aged and pretty frail. They are bolstered, invaded and cajoled to stay a while longer. Then still frail they are sent back to be cared for and "rehabilitated". I admit the once in a while the thought crosses my mind: "What could this person have done that was so horrible in the past, that the child/family would insist on keeping him/her so tortured now?"

It is amazing to me that we fight against the inevitable so hard. Being a Judeo-Christian based society one would think we would embrace the concept of eternal life and when life has little or no quality left, chose to not seek treatment and just let nature take over. I must admit I often think that if the family or patient had to take on more of the cost for the care, we would have stronger palliative and hospice programs in this country. I have seen some sad and distressing situations when family cannot or will not let go, and so, force their "loved" one to be subjected to test after test, treatment after treatment just to sustain a body whose mind has been ravaged and whose body tormented.

Then again I see the change that takes place in the family's heart and mind as they are taught to see the signs of distress, pain and hopelessness. One of the most fulfilling parts of my job is to help them become aware of the suffering and poor quality of life that the patient is going through so they can come to peace that the kindest action is comfort care and sharing of their love with the patient. Insuring the most peaceful death possible is what makes me get up in the morning and face some sad days.

I will look for your book and thank you for trying to help us face up to the facts of life, and of death

Jubi Maggiore, RN

Thank you, Jubi, for you kind message. I am taking care of my 85-year old mother now. She moved into my house 7 weeks ago. we had to install a stair glide so she could go to the 2nd floor where I set up two rooms for her. 10 days ago she had to go to the ER and they said it was pneumonia, but I think they may have gotten it wrong because she has made a come back. She also has been on dialysis for a little over two years now. She is very frail. And now that she is back home after her 9 days in the hospital, of course she is weak and tired. I don't know how to actually walk that fine line of helping her make decisions and allowing her to be independent and retain her dignity. We are ...learning as we go here. My main goal is to make her as comfortable as possible, care for her, and find out her wishes ...and carry them out as well. I hope for no more ER/hospital visits.

Wow,this piece really hit home.After my mother's stroke in 2002,my life changed dramatically. I am an only child so all the decisions fell on my shoulders. I couldn't walk away and I was forced to face everything with little time to research options.My mother had always been totally in charge of her life and had trusts set up and health care proxy in order, but didn't trust me enough to start funding a revocable trust in my name that I would now have to fund so I could manage her affairs which involved long term care for her. Right away I was hurt that she didn't feel I could have done these important things-that she had to be in charge no matter what. She was always sort of critical and caused a rift in our life by making subtle remarks that could irritate us. After the stroke she became a "sweet old lady", not the mother I knew. Our whole world reversed as I became " mother" to her. It was hard for her to let go,but she was paralyzed on the left side and lost her left side perception-nothing was visible to her that was on her left side-not even her arm was there in her field of vision or feeling-books and paintings were only half there. She could no long read, push buttons on a phone or operate mechanical things, let alone pay bills. She had her mind though!She could still do the NY Times crossword puzzle the Sunday after her stroke if I read her the clues. She still knew what day it was and where her grand daughter was in India. Her curious mind was there, but managing her life was not an option. Rehab and recovery was the goal and she went at it with a vengeance. Pulmonary edema got in the way and she ended up in a nursing home and I had to find a good one quickly in my home town, three hours from where I lived and spent the next six months traveling between those places until she could be stabilized and moved nearer my home. That meant selling her home, dispersing her things, finding a place for her near me, which would do more rehab and deal with my own life which had just received another shock via my husband(I won't get into those details). To get her to Massachusetts meant hiring an ambulance at the cost of a thousand dollars plus, but I found a luxury car I could rent for a day ($99)and a nurse friend to come with us and we drove her here-a much more comfy ride than flat on her back or in a wheelchair for 4 hours in a bumpy ambulance. This was the beginning of my "creative ways to save money and make my mother more comfortable" and seem less like a paraplegic and keep her out of institutions. My goal was now to do this for what was the next six years until her money ran out or she passed away. I eventually found a wonderful, mature, educated Kenyan woman who I hired away from an agency to be her full time aid. She lived with her at an assisted living until that got too expensive and I ended up building a handicapped house next door to mine, which turned out to be less expensive with a full time aid than any other possibility. I have never been in a management situation or trained that way-always an at home mother with part time teaching or landscaping jobs.Now I had actually built a house and managed a difficult situation with no training. It pushed me to the edge and now I have a beautiful handicapped accessible house for sale in this wonderful housing market, no inheritance, a difficult marriage (husband is diagnosed with Parkinson's)and the diagnosis of breast cancer this week. I feel angry sometimes that the stress of dealing with all this came at a time when I should have been enhancing my own life's goals. I feel guilty that on my mother's death I was some what relieved and yet because I was now on antidepressants, I did not fully mourn her passing-that had happened earlier I guess over time when I realized she was different from my original mother and that I had become"her mother". This seems to be happening a lot to other women and I will now read this book and hopefully find some insight that I can share with others.

I feel like I went to bed and woke up old. It seemed to happen so quickly. I joke that if it wasn't for doctor's visits,I wouldn't have a social life. I have a long term care policy and I hope it will keep me from being a burden on friends and family. The hour show went so quickly. I was chief caregiver to my mother and mother-in-law. I am now 76 and feel the decline daily. I just wanted to tell you what a great hour your radio is and I'm so glad I heard it. Alice Mai Arzani

I have been listening to On Being for many years now. I actually discovered Speaking of Faith shortly after moving to Florida in 2004 to live with, and take care of my parents in their final years. I have thoroughly enjoyed this program over the years and many times have listen to the downlowad of the extended interviews. As a person who has spent many years exploring my own inner deamons and working through them to become the person I am today; someone who I love, like, accept (warts and all), who can forgive and let go of the past, there have been many programs that have touched me and resonated with me. This show, however, is the first one that got me to come to the Share Your Story Page. Listening to Jane Gross's experiences taking care of her mother at the end of her life was very much like my own experience and I enjoyed her stories and insight even though nothing was actually a new idea or knowledge for me. About two hours ago, I came to this page to share a little bit about my own experience caring for my parents at the end. However; after typing for most of that time and only getting through the first year of the four and a half years which ecompassed the time from when I arrived in 2004 to my mother's death in October of 2008. I realized I need to write it all out. It will most likely not be the next Great American Auto-Biography. But it is something I realize I need to do for myself. I believe that it is a great gift when you as an adult child are in the position to care for your parents at the end of life. Especially if the relationship had been rocky over the years. I had discovered shortly before moving to Florida how much I really did love my parents dispite everythig that had gone before and how much I wanted the opportunity to show them by my presence and caring what they had meant to me. What I experienced along with the increasing responsibility, tiredness and frustrations, was the redemption that Jame Gross talked about today. I truly believe that especially if your relationship has been difficult over the years, that adult children should embrace this opportunity to finally just let it be all bout love. I know it can be hard, but you will never regret the experience and you will never feel guilty about what you didn't do. I have decided to share the beginning of the story that I started when I first came to this page. The title comes from a line that my mother would say to me many time towards the end of her life when she was becoming more and more dependent on me. Mom would turn turn to me and say "Don't get old Lauren." To which I would reply, "I would be happy not to Mom, can you tell me how to stop it?" Don’t Get Old Lauren: A Daughter’s Journey in Parental Care Giving In 2004 as my father was approaching his 90th birthday, I decided to relocate to Florida from Oregon to be close to my parents. I knew as the only girl and unattached child of the family it made most sense for me to be prepared to be the caregiver when the time came. I, as many children, had had a difficult relationship with my parents as an adult, most especially with my mother. In April 2004 I was 46 when I arrived in Florida. There had been a number of years in my early 40's when I had no contact with my parents as I was working through my own issues. It wasn't until about three years prior to my move that I intentionally reconnected with my parents because I wanted to heal the breach before they were gone. When I moved to Florida, it was with great trepidation on both sides. I had realized for some time that it would be primarily up to me to make the relationship with my mother work, since she was still the same psychologically unenlightened and damaged person I had always known. Of my parents, my mother was the one with the most health issues, although in 2004, both parents were still independent and active. However, my father had never had any severe health issues and was still playing tennis at least four times a week, gardening daily, and doing most of the housework. Upon arrival the plan was for me to stay with my parents for the first six months to establish myself in a job and find a place of my own nearby. This plan was initially disrupted by the arrival in Sept. of 2004 of Hurricane Francis and then a few weeks later of Hurricane Jeannie. After more than 20 years of living in Florida and not being affected by hurricanes, these two storms both landing in almost exactly the same place, were only miles from where my parents lived. We were fortunate in that there was little damage to their home, however, the extent of the damage in the surrounding community meant that rentals were at a premium and so it was decided that I would stay on living with my parents until the following spring. As I said earlier, there was mutual concern that my mother and I would be able to live comfortably together. We were all happy to discover that this was not the case. I used to joke that it was a combination of my mother mellowing with age and finally growing up that made it possible. While this was true, from my perspective, I believe that the work I had done to get my life together and work through my issues, allowed me to handle my mother in a way that smoothed over problems rather than escalated them. I had realized that even thought Mom was still a champ at pushing my buttons; I didn't have to respond as a 10 year old. There were a number of occasions when Mom would bring up a potentially explosive topic and I would reply that I thought we should agree to disagree and move on to something different. I also believe that by living with them, this allowed my parents to finally view me as an adult and to appreciate that while they might not have agreed with the decisions that I had made, that I had grown into a responsible adult. For most of my adult life I had dealt with my mother/daughter conflicts by keeping at least 1000 miles between us. I will also admit that I was definitely the black sheep of our family. Considering the state of my parents’ health when I planned to moved to Florida, I had imagined that my mother would be the first to die and I would be left living with my Dad until his death. However, it was my Dad who passed away first. All things considered, this was probably for the best and the quick progression from initial illness to his death took only about 4 months, of which time only about 3 months of when we knew he was dying. My Dad developed what we thought was bronchitis which over the course of a month was treated with three different anti-biotics. In reality what we came to discover was that my father had picked up a virus that attacked his lungs. The anti-biotics were too much for his 90 year old body and caused the shutdown of his kidneys. At first he was open to going on dialysis, however, once his doctor informed him that the virus had caused permanent scarring on his lungs which would prevent him from living the active life he had lived up to this point, my Dad decided to let nature take its course. As a family we accepted my Dad's decision without any conflict, but this is not to say that we wanted him to give up. At the end of the day we all knew that it would have been torture for him to continue living if it meant that he spent the majority of his time in a chair. My Dad was not an arm chair kind of guy. We elected to keep Dad at home with Hospice care and were fortunate to have great caregivers from the agency we choose. Ironically, four years previously, I had assisted a professor of mine and her family care for their mother who died of renal failure, just what Dad was going through now. After the shock of the due date for his death had somewhat worn off, I realized that this was my last opportunity to show him and tell him how much I loved him. I will always cherish this gift that I was given. I remember the first night when I realized I had to put into word how I felt. Growing up I had been a Daddy's Girl and was closer to him throughout my life. I believe many of my strengths had their roots in how he nurtured me as a daughter. He always encouraged me to do anything I wanted and to not let societies restrictions restrain me. Just prior to the final diagnosis, I had taken my Dad to his eye doctor on a Saturday because he had a persistent eye inflammation. I went into the exam room with my Dad and during the exam the three of us chatted. The doctor made some comment about how lucky my Dad was to have me to bring him to the office. My father's response was like a benediction. He said in reply, I don't know what I would do without my daughter, she is my strength. Fast forward six weeks and my Dad who is getting weaker, but still ambulatory, has just gone into his bedroom for the night. I went in after him and I said I had something I wanted to say. I have always known that my parents love me and I think that even if they had had doubts before I came to live with them, they now realized that I loved them too. But time was running out and I wanted my Dad to know how much I loved and respected him. When I went into the room I said that I wanted a hug, as I embraced my Dad, I told him that I loved him more than he could ever know and that I was so grateful that he had been my father, that he was the best father in the world. I should interject at this point that both my older brother and myself had been adopted and that much of the personal therapeutic work I had done over the years revolved around this fact and the issues that spun out of this fact. By this time both my Dad and I were crying and hugging each other for all we were worth. My Dad responded to my statement saying that he knew he had made many mistakes, but that he had always loved me. And I said that whatever mistakes he had made didn't matter, that they were nothing compared to all that he had done right as a father. To my dying day I will be grateful that I had this opportunity with my Dad. There were so many times over the years that hurtful words were spoken or loving words not uttered, but at the end I was able to tell my Dad how much he meant to me. Do I wish that the break in our relationship had never happened? Of course. Do I wish I had spoken my love more often over the course of many years? Absolutely. But the fact was that I while I could never go back and regain those lost opportunities, I had been given this final one and I didn't blow it this time. Dad first got sick in April 2005 and Father's day fell towards the middle of this final illness. There had been many years when I had not sent a card to either of my parents, so I decided that this year, instead of just celebrating Father's Day, I would celebrate Father's Week. Starting on the Monday before Father's Day, each morning before I left for work I left a card waiting for him. While I grew up in a family that was not afraid to express love, we tended not to be sappy about it and humor was also very important to all of us. Each card I left from Monday-Saturday was more of the humorous variety, but also loving. On Father's day itself I found the perfect card, it expressed my love and admiration for him and gratitude that he was my Dad without being overly sentimental.

I appreciated the topic & interview with Jane Gross. My partner's mother passed when she was a young 67...
We moved across the country, returning to "home" to care for her until her death.
Jane's words of imagining running away at times, was familiar. As Jane, we never ran...
and like her memories, we are glad for everyday that we shared with our Mama!
At times, We live with longing tears, still-shocking "remember when?" & hilarious stories about the last days of Maydell's life; but we live with no regret. What a fabulous way to live - with no regret!
RIP: Maydell Louise Pietsch -Stauffer

I felt a passionate connection with everything Jane said today and on her blog which I follow regularly. It's so difficult to watch my independent 91-year-old mother struggling helplessly to be the person she used to be when her physical and mental condition now make it impossible.

For the past four years she was my full-time job even while she lived in an independent apartment in a retirement community. My two sisters live in Boston and they do everything they can to participate in her care. Her short-term memory is pretty much gone so she could call me ten times a day with major and minor disasters. We lived through hospitalizations, depression, anxiety and all kinds of problems.

[One tip I can give other caregivers is to write up a one-page summary of all medical problems, previous hospitalizations, allergies, medications, primary care doctors and emergency contact information. Update it as needed and print out a copy whenever you visit a new doctor or go to the ER. This has been remarkably helpful.]

Finally her doctor said that she needed assisted living so now she has a two-bedroom apartment with a live-in aide. That changed everything for me. One sister now pays the bills online and the other orders groceries by phone from a store that delivers. Now I can actually do my own work which is incredibly liberating. I still go with her to important medical appointments; I manage the emergency room; I'm the first call if something comes up; I visit her a lot. But I can't change the fact that she is in a decline and that her life is no longer the one she wants.

Like Jane, all this has made me think of the end of my own life. I'm not a pessimist like my mother and I don't feel threatened by people who are disabled. In fact I used to be a para-chaplain visiting people in nursing homes. I have no idea what awaits me but I hope I can meet it with courage. My mother says she never gave any thought to what being old might be like. I have no illusions about it. If I need to move to a retirement community I know which one it will be.

The issues that came up for our family weren't between siblings (mercifully our hearts are completely united) but rather the differences in viewpoint and personality that my sibs and I have always had with our mother although she loves us and we love her.

When she dies, although I will be very sad I will know that I was completely devoted to her and that she acknowledged it many times. Last year I wrote an essay about her to read as a eulogy. I knew that I would be in no state to write it when the time comes. I also wrote a poem about her when she turned 80 and that expresses how I feel too. Now it's just a matter of helping her to get through these hard times. I am thankful for all the support I have had from members of my family and other friends.

We caregivers have an opportunity to contribute deeply to the person we love. As we read in the poem "Do You Love Me?" by Rumi: "I have lost all my strength/but from your power/I am able."

Note to staff: the attached photo is of my mother's 89th birthday party.

I found the discussion fascinating, and hope to read her book soon. We are in crisis with my mother, 103 on 6/24, who has gone within a month from being able to live alone in her waterfront cabin (with some supervision) to being flat on her back with severe spinal pain in addition to the congestive heart failure she has been battling for a few months. I live in Colorado, and Mother and my two younger brothers live in the Puget Sound area of Washington State. Mother has been living with one brother during winters and during her recent disability, with another brother assisting as feasible. I have made two visits this year, spending a few days each time assisting h in her cabin. We are struggling with issues of whether this can be "fixed," or whether it is the start of a declining process in a nursing home, as the principal cretaker family is about burned out and have their own health problems. Ironically, I am the eldest and perhaps the healthiest, but time/distance factors and responsibility for a 25-year-old son with cerebral palsy prevent me from doing much beyond correspondence with Mother and brothers plus research assistance on various matters. Must close to read medical reports...

I'm one of probably many listeners who are saying, "If only I had heard this at the time I was going through this" Much gratitude for articulating the myriad difficulties. One thing I noticed after 3 years of care giving-I now am much more conscious of the signs of my own aging. Being a "boomer" figured I could will myself out of aging, but have found the process to be inexorable no matter what. Also feel a constant immediacy about preparing myself for old age, but don't quite know where to start. (Maybe just get it all over with and move into assisted living now while I'm able?)

Great shows like this treasure are the reason I will include some kind of bequest to Public Radio. Feel a great sense of community right on the radio. Thanks!

Appreciated your show with Jane Gross....her thoughts and the segement of her writing that were shared. My mother is also deceased, but her long good-by, due to dementia, silbing conflict, the nursing home in which she was placed contained elements I felt terrible about at the time and still do. This poem captures a lot of it:

No Longer There

I see her in the corner
The left side of her face
Midnight blue with bruises,
Her eyebrow stitched together-
My sister called me
The previous night:
“They say she fell,
And her rings are gone,
Probably stolen.”
I walk toward her,
Look down at her left hand
Resting, bare and lonely,
On the arm of the wheelchair-
The rings she had worn
For some fifty years-
No longer there.
I sit down beside her,
Holding resignation like a pillow
Over the face of my spirit.
Oh well, what does it matter;
So much of her is gone—
The parts of her that made
And carried me into life,
Inch upon inch from her
Endlessly collapsing spine,
Her vision of anything but gray,
Her mind and all it ever knew
From the lifting of a spoon
To the name for a spoon
Or even the person it feeds--
Her name, Margaret.
So, what are circles of gold,
Anymore, to her or to me.
My dad, who paid five dollars
A week, to buy them--
He’s also gone.
He went so fast,
It knocked the wind
Right out of my heart.
She’s going so slowly,
It’s knocking all the sense
Out of life.

I recognized much in Gross and Tippett's conversation about caring for dying parents: the problem of geographical distance, old wounds re-opened, and unequal burdens taken up--or not--by siblings with differing capacities can leave life-long scars even (maybe especially) in families that are "close" but have never before had to parse the grammar of familial love.

As I listened, however, I was caring for my husband, whose debilitating mental illness prompted him to keep interrupting despite my repeated reminders that I was trying to hear. Wives caring for incapacitated husbands is becoming the norm in my circle of friends, and when the spouse's dysfunction is the result of some kind of dementia, the exhaustion, grief, anger, and loneliness exceed even the horror of watching a beloved parent suffer. In my case, my husband's psychic breakdown coincided with my mother's dying (after two miserable years in care); negotiating the terror of his sudden and complete collapse kept me from both my mother's bedside and her memorial service. Now, three and a half years later, with the burden of my husband's care exclusively on me, the many years we likely have left to us as a couple look pretty bleak. When a parent is dying, one can imagine an end to it; when a spouse of one's own generation is chronically ill, the end of the suffering for both partners is hard to envision.

I certainly recognized Gross's fantasy of an imagined dormitory/spa where one's friends--mostly women alone--care for each other: a family of one's own creation. I want to investigate just how that kind of support system can be created, even in the midst of all-consuming caretaking.

I was drawn to the speaker's notion of repair, redemption perhaps even renewal of family bonds that can happen in family life during this time. I think being a caregiver to my parents is teaching me a lot more about who they were, their hopes and dreams, and the ups and downs of our relationships. That notion of "becoming who you were when you were ten" was a scary reality. Succumbing was circumvented only by the grace and love of my wife who accompanied me in the mission to be caregiver of my parents. My dad has since died, my mother continues her journey (rediscovering herself).

I left home at 13. Not totally, I went back for visits and brought their grandchildren back for visits, but usually I loved many miles away. When I returned to live in the same city i was 54 and supposedly older and wiser. My dad was failing due to Alzhiemers aggravated by his drinking. Our first "battle" was driving. The auto was a defining characteristic of his persona, and "taking away" the keys was a harsher reality than just giving up transportation. Even at his dying, he would talk about his 39 Ford Zephyr. Eventually, as the author suggested "annoyance did soften into tenderness."

My mother fights aging in her own way. She keeps busy and doesn't look. She jokes that God gave her only one good eye and ear, and she could easily turn the other way to avoid that which she disliked. But with her good eye and ear she laughs and adds color and creativity to life as she knows it.

Being a caregiver has been much more than I ever thought it would be. The painful agony and death of my father is etched into my memory. My parents have not been easy to care for. They have added stress and edge to my life, my marriage, and my other relationships. But I agree with the author that it has made some distinctive changes in my life and relationships.

I absolutely loved the conversation about "The Far Shore of Aging". As a 34 year old woman with elderly parents (80 year old father and 72 year old mother), I found it challenging and at the same time encouraging. This is not an easy time for my parents and my family, but if I allow it, it can be a blessing. Thank you for producing this program. It came at a time when I needed it. I always walk away encouraged and enlightened from your programs. Blessings, Stephanie Darling

I generally like your programs very much but found the last one on aging very lacking...It was especially distressing to think that the NYT blogger on the subject did not even mention the options of continuing care communities. Many of us who join communities such as the Kendal communities find a very meaningful life...almost like being back in college. We know that as we age the burden of care giving will not fall on our children, though of course we expect interaction. Some of us think this is the best thing we have ever done for our children. There are many options for us to consider rationally as we age for our future care and death, and we have a great deal of help in doing it. Alzheimer patients remain part of the community for as long as possible. Local residents join hospice workers to help people in the last stage of life. Medical services as well as housekeeping services, mainenance, etc. all available.

I heard a lecture 15 years ago by an 80-year-old retired physician who related the following story about his father who lived to almost 100. The father was a farmer and adored farming; however in his late 60s, he realized it was too much to farm the whole property, so he sold all but one acre. For 15 years, he farmed the one acre and loved it until he decided that was too much, so he stopped the acre and concentrated on planting his front yard. In his 90s, the steps became too much, so he had window planters and was able to tend his little porch garden until he died. My parents went from being very healthy retirees in their 70s, to 13 hospitalizations in one year between them, two strokes leaving my father unable to drive and needing daily care. I related the story to my mother in hopes she was see the beauty of enjoying your life,making accommodations as your health changes and still finding ways to do what you love. She looked at me with a blank look and said, "Yeah, but I never thought you and or your Dad would ever get old." It has been six years and they both seemed shocked at their declining health.

I listen to many of the programs "on Being" and the one on aging this week was quite powerful. I am the sole caregiver for my mother in assisted living with a story very similar to that of your guest. For two years previously, my parents were together in the center and I also had to be the one to take my father to all appointments and support them both through his dementia and eventually hospice care. He passed away in December of 2010. I've been left with the planning, decision making, financial, and emotional support responsibilities with two absent siblings.

The references to the family dynamics regarding aging parents and the issues of bringing up the difficult discussions are ones that I relate to. I have learned that I must bring up those topics but, I must respect the time needed and be gentle with the words in order to effectively keep my parents part of their own planning.

My mother will not say that she loves me, like your guest. My father's last words to me were still anger about my getting him the care he needed. But, I am gaining in understanding about why they can't express themselves and I know that what I do is the right thing. I know that I am the lucky one to be able to provide the care and support for them.

Please have more on the topics of aging. There are many of us who are in this role and who must be planning for our own situations in the next 20 years. We want to move through these stages with grace, humility and love.

I am 86 years old and compliment you for the moving and inspiring readings I heard today. On the otherhand, I feel you are painting the aging subject with too broad a brush. Everyone does not become who they were when they were 10 - only those that do. I am on the treadmill 4 times a week, live a lone, shop, make repairs ad have dinner parties often. There are not an infintesimal number like me but a substantial number. Krista hit the nail on the head when she asked you about living in the present and you did not respond. My philosophy is derived from Hasidic Judaism and let me share with you how a Hasidic Master by the name of Rabbi Aaron of Karlin made that poitn in his reinterpretation of verse 6 chapter 30 of Psalms. The usual is: When God is angry it is but for a moment but his tranquility is forever. Rabbi Aaron offers this: From the Hebrew words Ki Rega, meaning: for a moment, we learn that one should only view life from the vantage point of what is in front of him/her in the moment. and if one does then life is in tranquility. Anging is not a disease requiring research and grand preparations it is part of living and good attitudes and ability to be patient is all that is needed by family members - and they have received enough to gladly offer it, along with care if needed, in return.

Jane Gross' fantasy of a community of her friends, all taking care of one another is not all that far fetched. There is a growing movement of communities, called co-housing communities, that strive to create socially and environmentally sustainable communities. The movement began in Denmark and is slowly expanding in the US. And though you do not necessarily choose your neighbors in a co-housing community (as you might in the type of community that Ms. Gross wishes for) co-housing neighbors hold similar values of community, caring, support,and aging in place. www.cohousing.org is a good place to begin to learn what co-housing is all about and to read about established and forming communities.

Thank you so much for the honesty, and wonderful dialogue. I can't wait to read the book! My parents health issues are complicated, and they need continued care and understanding. I really related to Jane's comment about how you cant just make a "to do" list, bulldoze your way through their problems, crossing them off, one by one. I am going to listen more, and just be present for them.

The podcast with Jane Gross was so touching. I am now 69 y.o., have a full time private practice as a psychotherapist and no one knows that I spend the rest of the time in bed with pain and fatigue from Sjogren's Syndrome and Fibromyalgia and now including a stent in my heart, on oxygen, have COPD, have just been diagnosed with epilepsy, have had lower back fusion, a shoulder replaced, need hand surgery, etc., etc. This has been my life for 24 yrs.
I listened to the podcast with dual awareness. I have been Jane to myself, taking care of all the insane details of major medical conditions, juggling 20 active drs., while trying to make a living supporting myself.
I listened to the podcast as Jane's mother. I had a full consciousness, like perhaps her mother did, while all this was being done to and for her.
My spiritual beliefs and practices are what keeps me present and still excited about what each day will bring.
Kristi - thanks for adding to the quality of my time in bed with your wonderful podcasts.

Jane's story was unnerving and comforting at the same time. I am dealing with these things in my own my life as my mother has been sick for the past 11 years, so it aroused some sadness in me. But hearing someone else talk about their experience with their mom and what they felt going through her illness is comforting. So many times I feel a deep sense of loneliness. I accredit this to the fact that my mother is dying, and I will have no parents when she is gone. But because it is such a lonely feeling, it is really comforting to hear someone share their experience. It makes the experience feel not so lonely. Thank you

I have been blogging about the journey of caring for my Mom for the past 3 yrs. Although it is difficult at times,it has taught so much about life and myself. I am always very interested in hearing anything that helps me in this process.

I absolutely loved your interview with Jane Gross. Only wish i had heard it 2 years ago! My mother died one year ago and hearing Jane reinforced hard things i learned but now can pass on her voice to friends with aging parents.
And, Krista, your show gives me so much to chew on all week. Thanks for being on my planet.
Connie Lehman, Elizabeth, Co.

I tell people the good news for me is that my family has great genes, the bad news is that as an only child I have had to care for them all which included responsibility for four family members in four different locations at the same time. I always felt boxed in and guilty about wanting this to all go away- knowing that going away truly meant the absolute end. I found comfort in knowing I’m not the only one who thought this way. For one brief moment I didn’t feel so guilty and so alone! Excellent show!

I generally enjoy easing into Sunday mornings by listening to your interviews. However, the last one with Jane Gross fell rather short. What I missed most was that you did not establish upfront important physical parameters regarding the care the mother of Ms. Gross required. At what age did she begin requiring care, and why? Was this care an hour or two a day, 9-5 every day, or 24/7, and what care did she need? Who delivered what part of this care? How did the care-giving progress, and over what period of time. Etc., etc. Instead, you started immediately with touchy-feely stuff, and even that did not get into truly important issues until way into the show. E.g. it took about 20 minutes to find out that Ms. Gross had been estranged from her mother for a very long time, and another 10 minutes or so to learn that Ms. Gross was single and childless. One was left to wonder what her problems really were, given that in other situations care giver s have to juggle commitments to their own family, to their jobs, as well as to the person who needs care. The show was mostly about Ms. Gross's feelings and thus was rather useless, in my opinion, for most everyone else confronted with the problems of being a care-giver. While I appreciate the sensitivity you exhibit in dealing with your interviewees in general, I think it would be entirely appropriate to be a little more probing now and then.

I was thinking of a mothers day lunch at the nursing home with my mother and siblings. She was wearing a dress (that is what you wear when you dress up) and she had on one knee high stocking made for a dress and another made for pants. This left one too short and it showed. On the way to the dining room she slowly ambled down the hallway and stopped in front of a painting yo say it should look familiar because my sister had lived it in - and on the way back said the same thing about an entirely different painting. I have found it difficult to visit my mother in the home - the person i knew is slowly fading away - like a negative bleached by the sun until the photo it held was no more.

I was struck by her observation that one day her mother was fine, and then a myriad of little things, none of which were going to kill her, appeared on the scene and totally changed the landscape of their relationship (my paraphrase).

The reason this struck me so poignantly is that until 11 years ago, I lived with many little things that would not have killed me. Then, in the course of one night, I was struck by a major catastrophic loss that redefined life as I knew it. Now, at 62, although I keep trying to undo the effects of that blow, so that I can continue to have some semblance of my former life, I know there are no guarantees that such will be the case and I may continue to age with these traumatic health challenges...a daunting prospect indeed! (Or, I may die tonight. I'm actually glad I'm not privy to that information.)

My interest was also piqued by her description of how she and her brother dealt with their respective caregiving roles; my daughter has been an absolute pillar of strength during this nightmarish season of my life, offering compassion and kindness almost without fail, while my son has pulled away and only occasionally checks in when he can handle it. Actually, I think that one of the biggest gifts of this experience is the empathy my grandchildren have developed as the result of having a grandmother with disabilities and severe limitations. I think that has made them bigger and better people.

Thanks, as always, for the deep and thought-provoking program.

Listening to this show, I was reminded of the one about caring for people with Alzheimers and how often experiences are more easily remembered than facts. I think we need to find ways for those who are aging to share with others what they find particularly enjoyable so that we can enable them to relive those experiences if/when they become less able to communicate their wishes. And we should be communicating our experience wish-lists to those who will be caring for us. Of course, this is best done by sharing the experiences (and life in general) together across the generations.

I read some of the early comments and reflections shortly after my visit with Krista and was so gratified by the response and the thoughtfulness that comes from people who are willing to think hard about something most would choose to deny. Returning to the site, to check schedules for upcoming shows, as a devoted listener long before I was a guest, I was again moved by your words but also wowed by the beautifully produced page, the map, the graphics. I suppose talent draws talent — in the same way that "belief'' draws such a special audience — but again, my boundless thanks to all who made this not only so meaningful but so visually engaging.

We were washed toward that far shore with our mother beginning in the Spring, with the crisis in the hospital that was nearly as traumatic for the family as it was for our mom. As this first crisis resolves, we are all beginning to see the redemptive possibilities in this moment in time. Your interview and Jane's story nourished my hope for redemption, forgiveness, and growth in all of our relationships. Jane's comments about how the magnitude of this experience took over even cocktail party conversation resonated with me: I am finding the process of caring for our mother to be endlessly fascinating and all consuming. (and I have ordered her book) Thank you!

A poem I wrote...

The Devil’s in the Dementia

This drift toward derangement is about
The petals falling in her path,
Time’s soft bouquets, decaying dreams,

Where the road was once a strip of solid gold,
Her style and conversation flourished.
Ideas collided, creating new inspiring scenes.

Decried, cockeyed, it all begins to come unglued,
Better now to fall upon her sword
Than subsist, a sad alumnus of the good old days.

It is 4am, I listened to the podcast at 3am on a sleepless night....many of these since Bill died...after 4 years of care giving my husband who died last year. She said so many relevant things about the care giving role...horrible to watch him deteriorate, not knowing what to do, how long it will last, in trauma the whole time, guilt for not doing it better, and on and on...oh to do it over and do it better but i did not know what i was doing, it came on suddenly, i was in denial, i was grieving a loss i had not even accepted as imminent after a
glorious marriage.

so much more preparation was needed....too late.

Had same feelings re my mom...we all do the best we can with where we are at. Have learned from my regrets & hope can do better next time if I can. Be kind to yourself, love ourself, forgive yourself , etc. We are all "works in progress". Peace.

Wow- the introspection that Krista and Jane shared on this very tough topic moved me so much. My brother, sister and I have gone through crisis, chronic disease with both parents aging. Our big strong Dad got Parkinson and my independent, assertive Mom came down with Macular Degeneration, then a very slow moving Alzheimers- these diseases all happening- after- multiple heart attacks, breast cancer, perforated bowel, and abdominal aneurism... Mom and Dad taking turns with these horrible illnesses. After selling their home, moving them to independent Sr. care, Nursing Homes and then moving them our brother's small community nursing home 6+ hours away- we have gone through many, many tough times as a family. Our family though was one of the "unusual ones". We did not need repair- even though my sister and I did not always get along as children-we bonded, and then banded together to get things done- and have become much closer in the process. We lost our Dad 3 years ago, and Mom continues to amaze us all in her ability to keep her strength after so many years of her decline, without her rock- Dad. She is one of the few elderly people I know that "graduate" from Hospice- and not by dying- but rallying! This time of stress has been and continues to be a learning curve. We have all grown, we try to see the glass half full in every moment- and continue to learn from our parents as we strive to communicate with Mom through gesture and reading her facial expressions- and recall the things Dad shared with us all as he slid downhill. It is a bittersweet season- and our family has been able to get through it with our shared knowledge and love for our parents and each other. Hopefully our children and grandchildren will be able to do the same.

I have had many opportunities to listen to this broadcast from your archives but, for reasons that I was afraid to admit to myself, I never did. I am so glad that you reaired this interview this week because it touched me very deeply.

One of the topics that did not come up in the edited interview is decisions that come at the end of life about appropriate care. My mother had presented to me months before her death with her advanced directive about the type of sustaining care that she wished for at the end of her life. She told me that I was named as the person who had medical power of attorney over those decisions. At the time I read the document: but I did not discuss it with her other than acknowledging that I undestood the responsibility I was given.

When my mother wound up in the hospital on a ventilator and heavily sedated a few months later, I was faced with a personal crisis. She could not communicate and I desperately needed from her to know if this was what the document meant! Were these the measures described in abstract legalistic terms in that document that you were talking about? What is it that you would want me to do at this juncture?

As I agonized over what instructions to give to her care givers, the decision was, at least partially, taken from me. Her doctor had said that the outlook was not good, but she also told me that she would let me know when it was time to withdraw all but palliative care. In the end, I was not left to make the decision alone. My three siblings were all there and in agreement that it was time.

Still, my advice, to those faced with the prospect of handling end-of-life decisions for a parent, is to discuss it at length with your parent no matter how uncomfortable it may feel and no matter how distant you perceive that decision to be.

Like many, I was very moved by this program. My grandmother lived with my parents for the last years of her life and died in their house. I have always expected to offer the same to my parents but it was also good to be reminded by Jane that, if you can find a good one, care facilities can be a wonderful option and support community for people as they age. Ironically, my oldest brother works at a nursing home and has a particular talent for working joyfully with older people. He may end up handling the whole thing better than I in many respects, and it was good to be encouraged to think about that as well. Finally, Jane's words about living in the company of friends moved me so. My best friend for the last 27 years, though partnered, has no children and neither does her sister. I sent a link to the show to her knowing she would enjoy it and took the opportunity to tell her that I and my children will take care of her if that is necessary. Family is family, regardless of birth, and it's good to say these things now so there's no confusion later.

One has trouble doing this without the help of God. And without God's presence it makes little sense. Also one has an obligation before God to take care of one's aging parents.

>Thank you Krista for a very timely interview on this very "delicate and seldom talked about subject" - I am only 66 years young, and have lost both parents, my mother died at a very young age, she was only 37 and my father died at age 77.

I am only too aware that there is only one way to leave this life. The only problem is that I want to be in control of my departure. I do not want my life to be extend or my death either. I Just want to be kept comfortable - I just want to be let go without drugs, or hundreds of test.

I have prepared my living will and hopefully my wishes are carried as I asked. I don't want to live to be old with no "quality of life".

I'll make sure to read Ms Jane Gross' book and try to bring the subject with my friends and family.

Thank you again for your inspiring programs.
letty

Thank you Jane Gross for helping me identiy and name some of the emotions I am going through as I take care of my 91 year old mother. She lives in a cottage about 30 ft from my house giving her some independence yet increasingly limiting mine. What I learned today is to slow down and put my checklist away. I think my mother is ready to leave....I am not ready for her to leave as evidenced by my reluctance to say the word...die. This is the hardest thing I have ever had to do.

I heard your rerun of the interview with Jane Gross today. Her New Old Age blog was a landmark column and most helpful to read given the work I do. Another contributor, Paula Span, also articulates problems and issues that families encounter with clarity and compassion (and conflict).

As a geriatric care consultant I help families the sometimes lengthy process of assessing an elder's health issues and needs and the accompanying care plans which change as illness and abilities change. This is especially true regarding chronic illnesses that progress and dementia that can take many unexpected turns.

We talk about getting old as a boon. "Look at us we're so much healthier than our parents and WE'RE leading healthier lives"...until the unexpected happens; loss of memory being one of the most shocking health crises that take families (and individuals) aback. And we know now that noone is exempt - people in their 30's and 40's can be affected by dementia, leaving spouses still raising children having to deal with what becomes a very complicated picture. Or leaving single adults to find the ways to be cared for.

We live in a time of fast medicine - quick decisions to cure, make better, " stabilize" conditions; but this can be at the expense of the whole picture. Just read Michael Wolff's "A Life Worth Ending" to get an idea of how difficult it is when the medical community push for "life" and children, already in a state of anticipatory grieving, may not able to make clear judgements in the moment, but determined to do the best, if not the right, thing.

The book,"My Mother, Your' Mother" by Dr. Dennis McCullough provides a very different and consoling perspective. We can't help or change the length of an illness but we can start early by thinking about what we want, if and when; true for children and parents. He suggests the idea of "slow medicine" which refers to viewing a family member's health and abilities over a long period of time. More than a primer it helps organize an acceptable way for us to look, plan,and talk so that when health decisions must be made, it can be accomplished with less guilt, less angst and some sense (if not a complete plan) of how to proceed.

There will never be a fix for people who refuse to discuss the measures they do and do not want if they are no longer able to make decisions but family members who observe over a long time can help may learn indirectly what their family member might accept. This is true even when families don't agree or noone has power of attorney because once they learn that without consensus the legal machinery may take over and assign guardianship. Most families don't want that.

Families who struggle with one another benefit from talking with objective professionals who assist by putting together a picture based on talking with all involved to glean what their family member would want and help execute those wishes.

Your programs on aging and dementia have been good to get these conversations started. Thank you for your efforts and keep these topics at the top of your to-do lists. As the boomers age, the more information, the more the information is repeated, the better off we will all be.

~ Ruth Rothbart-Mayer, LCSW
Geriatric Care Consultant

SO POWERFUL... SO IMPORTANT. SO GRATEFUL.

By the time I had to become responsible for my 85-year-old mother, I was 'fortified.' She and I had never had a good relationship - too much alike.
After I graduated from seminary, I spent another year in an Advanced Clinical Pastoral Care Education at a major hospital, and part of my time was spent at the senior area, being with those who were completely cognizant to those with mild to serious mental and physical impairment. I served churches with elder populations, and was usually the one to visit, etc.
At this time of my life - having just turned 76 - I see each day of my life as a gift. I am very healthy and still very active, yet I am well aware of possibilities for change, so I have all my affairs in order, and have fixed living wills, etc., so that others with less responsibilities can take over, so my children, with young children, willl not have to stop their lives for me. They are aware and appreciative of this.
I'm with Gross on the idea of long-term illness before dying: I definitely don't like that idea. To a certain extent, I'm with Woody Allen, who once said, "I'm not afraid of dying; I just don't want to be there when it happens." I'm not afraid of death at all; it does bother me that, even though I can't hike the mountains, I really hate the thought of possibly being wheel-chair bound.
As to demensia: I think that, if it progresses, will bother my children and grandchildren more than me. Maria Shriver has written a good book about her experiences there.
My theology/philosophy at this time in my life is: find something funny to laugh about, find something to learn more about; be aware of the value of each moment, each visit with family and friends, and look with love at this beautiful world around us.

What a fabulous interview! Having lost my mother 20 years ago, and my father 10 years ago, I now realize,as I get closer to the long part of life, that there is now a program helping us face how we will go through this part of life. The book will be my next read.

I am glad that this show was repeated this morning as I had missed it when first aired last year. Like many who have posted comments in this space, I wish that I had had heard Ms. Gross's wise words back in 1996 when my mother's life (and mine) were changed after she suffered a series of strokes. Like Ms. Gross, I am an aging, single, and childless baby-boomer. My father had died (also from stroke) when I was still a child, and my mother and I, always very close, had grown even closer after his decease. One of the most important points which Ms. Gross made during her conversation with Krista Tippett was that many of us in America are almost unaware of the elderly, thereby placing us in a state of ignorance about what aging entails. As my mother and I lived together until she became ill and I had to place her in a nursing home (where, after 6 years at the age of 89, she died), I witnessed her gradual decline. Stroke crippled her, diminished her cognitively, and, the worst, left her aphasic. Being an only child in such circumstances is both difficult but in some ways easy as well in that while I had to do and feel everything, I was also spared some of the divisive situations that can often arise between siblings when trying to navigate the unchartered waters of caring for an aging or ill parent. This part of life is an exam for which you cannot prepare. We should be grateful, however, for people like Jane Gross who are the teachers among us imparting valuable lessons.

Thank you for this profoundly resonating hour and half of unedited conversation about aging and dying. I once heard a saying that "we are children twice and adults once in this life" and I think this conversation explains why those words are so true. As I witnessed my mother's slow physical, mental demise and her evental finality last year, all of the paradoxes, bittersweetness, cliches ad irony of life came crashing in on me. I have lost many loved ones over the years including a spouse, sister, father, friend and many extended family members, but losing a mother in midlife leaves a barreness unmatched. My mother was the longest running human being in my life, I knew her longer and in some ways more intimately than I even know myself and no one can ever replace the conversations, language, lessons and perspective that she shared with me for over 5 decades. Thank you Jane and Krista for giving me words to relish and ponder.

What an outstanding interview! I would like to read Heschel's essay from the 1961 WHCoA / To Grow in Wisdom. If anyone has found an electronic copy the URL would be most appreciated.

I would like to get your daily / regular reflections by email

Trent Gilliss's picture

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There is another side of this situation, when a spouse needs to take their wife/husband. At the age of 54, my wife had a watershed stroke when she had open-heart surgery. We went from a normal life to spending a month in the hospital after the surgery. Then four months in a nursing home, then intense therapy and another nursing home stay. Soon I was able to bring my wife home. She lived at home with me for about a year. My kids helped a lot. Then; back to a nursing home where she has been since 2003. I wrote a book about my/our life in the first 3.5 years after surgery. The book title is Frozen Grief. The following text is is what I wrote on the back cover of my book

When a person’s life ends; there is a grieving process for family and friends. The closer your relationship is to the person the longer the grieving. The grieving of your loss doesn’t go on forever and the person is not forgotten. From time to time memories of past events will come back. Those memories for the most part are good for you.

In my case I am still grieving the loss of my wife. My wife is alive but her life is a long way away from what she or I would want it to be or thought we would have. She is not able to do the many things a grandma would do for her grandchildren. She is not able to do many things for herself, plus, she can’t live in her own house with me.

Life sucks sometimes. Many people have a tragedy happen in their lives. For me, in my situation, what could I do? I only had two choices. I could stay and deal with the problems and frustrations of being a husband/caregiver or I could leave. I chose to stay!

Thank you for this conversation. However, I regret the assumption that assistance in the late-80s AIDS crisis, was only provided to the afflicted gay men by the gay community. Outside of a few select cities and across the US, straight people, myself among them, stepped up early and cared for our friends. We were young and dealing with end-of-life issues, when our peers were starting families as would be normal for that age. Decades later, we gay and straight survivors easily include markers such as when we cared for so-and-so, when so-and-so died, at sos-and-so's funeral, in our conversations but only among ourselves.

Wives Scontras I can see what you necessarily mean, but have you ever deemed an alternate means of looking at it?
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I listened to this as I made my Mom's family holiday cookie recipe and tried to grapple with the fact that my Brother and I will be moving her to Assisted Living on Thursday - she is 88. This interview could not have been more powerful, more poignant, or more relevant to my world right now. I laughed, I cried, and I felt like Jane Gross was living my own life. I too am one of two siblings, a son and daughter, caring for our aging Mother. Like Jane, I never had a close relationship with my Mother, my Brother was clearly the 'favored' child. But we now face this new chapter in our lives together and thankfully we are very close, so it has made some of these decisions and other issues a bit easier to accept and work through. But it has been a challenge, being a type-A personality, to try to step back and appreciate this time for what it is. I can't agree more that we live too long. The time between a good quality of life and eventual death is simply not fair to anyone, especially to my Mother who asks every day 'Why does God keep me here?" This interview with Jane Gross is simply so powerful and so instructive and could not have come at a better time in my life. This was the best holiday gift I could have ever received. It only serves to reinforce my belief that we may not get what we want, but we always get what we need. I needed this right now. Thank you for sharing this with everyone!!

I love the title of this interview because, indeed, aging seems to be away on the far shore. I am a social worker working in a rehab unit of a large nursing home. I do this work because I helped care for my mother when she was diagnosed with Alzheimer's. She has been gone for just over two years now but hardly a day goes by when I don't think of how life was for her in a nursing home. I am one of eleven children and since I never married or had children of my own, I was closer to my mother than my siblings in many ways. In her Alzheimer's mind, my mother thought that I was her sister. During her years of suffering from Alzheimer's, my mother and I had an entirely different relationship than we had when I was younger. Our relationship changed for the better and it had been a very good relationship previously. My mother began telling me that she loved me and saying 'please' and 'thank you' to all who did anything for her. During her several years at the nursing home, the staff came to love her as if she were their own mother, despite some of her behaviors. I will be forever grateful to many of them for taking such wonderful care of her. In my work I see many adult children struggle with caring for one or both of their parents. Many people these days are working longer and live a distance away, not always by choice. The elderly struggle with maintaining their independence for a long as possible and, unfortunately, make the wrong decision about their lives towards the end. We do live too longer, thanks to modern medicine. The elderly outlive their money and means to live and sometimes sit and wonder "when is my time to go". It is heartbreaking. We are sad when they are gone but there has to be a quality to life or else many people believe that it is just not worth living. Yet I am always surprised at the number of people who hesitate to make end-of-life decisions. We all will die, some sooner than others, before we get old even. It just serves to remind me that I should just live in the present as much as I can. And as a geriatric social worker, be there with a listening ear when an elderly person or adult son or daughter needs support or encouragement.

It is so heartbreaking hearing more of the elderly today were being left behind by their children. Some children will just hire a caregiver to take care of their parents who are suffering from different illnesses worse, others are dying. Personally, I understand that we too have our own lives, have our own children now to take care of but to just leave our parents in the hands of a caregiver is something I cannot afford to do. What we have become now its all because of our parents. They may not be able to do things they used to do, they may have contagious diseases, hypertension, heart diseases, too weak to get out of bed... but, taking care of them just like the way they cared for us is one of the many ways we can show to them how much we love them and how grateful we are for having them as our parents.

I left northern Indiana where my sons and grandchildren are, to move in with my almost 91 year old mother in Oregon. My brother and his wife live about 20 miles to the west of my mother. My mother's health is not bad, but she is taking blood thinners as she had had atrial fibrillation.
She now has a pacemaker. I am helping her by taking the trash out to the curb once a week and helping her with some cooking and some cleaning. She is very active still. She drives. She goes to a senior dance at the senior center. She sings in a choir in another senior center.

I would have felt very guilty if I didn't come out here from Indiana, but now that I realize she could live another 7 or 8 years or however long, I realize I am missing out on watching my grandchildren grow up in Indiana. My mother will not move to Indiana. My brother is the executor of her estate here. He basically does not talk to me and he doesn't seem to see me as an equal, as far as our brother-sister relationship. We actually don't have a brother-sister relationship other than him being a little judgmental of me. If I contact him by email regarding anything concerning our mother, he calls her. He does not respond to me. This just seems strange to me. He is kind of the boss of this situation.

A part of me really wants to move back to Indiana. I also feel an obligation to help my mother. My mother and I are finally getting along ok here at her house, but she doesn't listen to me with suggestions. She will listen to my brother. My mother is relatively independent. I am giving her company by living here. Is there any way to be involved in a support group for people in my situation. I am now 66 years old and a female. I give online English classes, so have an income, yet I am low income between this and Social Security.

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