How do we manage the end game?

Talked to my mom this morning, our usual Sunday morning ritual, and she shared a story that is troubling to any of us in middle age and worried about our aging parents. I’ll tell it here without any judgment and let you think for yourself.

Mom volunteers at a local school, and was going through her yearly orientation meeting when she a teacher whom I will call Anne. At 56, Anne is dealing with a series of interrelated tragedies, which she recounted to Mom. She has been caring for her mother-in-law, stricken with Alzheimer’s. Her father-in-law’s health also recently took a turn for the worse. Along with caring for her ailing in-laws, Anne also is dealing with severe storm damage to her home – including a flooded basement and uprooted trees — which her homeowners insurance will not cover.

Overwhelmed by these pressures, Anne and her husband Jack asked her sister-in-law Janine, an unmarried teacher in her 40s, to step in and take over the parents’ care. With no husband or family of her own, Janine had given her heart and soul to her career and to generations of students, and she loved teaching. Taking care of her ailing parents became a fulltime job, and Janine had to abandon the career that she loved. Depressed, she killed herself.

This story raises a lot of questions. Couldn’t the parents have gone into a nursing home? Didn’t they have a house that could have been sold to finance that? Couldn’t Jack and Janine contributed towards paying for someone else to step in and care for the aging couple at home? Would a more resilient person than Janine have toughed it out? If insurance had paid to fix the overwhelming problems in Ann and Jack’s home, would the couple have had more strength to be caretakers?

We always hope that we won’t have to face tragic circumstances like these, but the fact remains that many of us will as our parents age. I know of several middle-aged friends facing the anguish of watching a parent transformed by dementia or Alzheimer’s, and making difficult choices as to whether to care for them at home or institutionalize them. Some are empty nesters; others are still raising kids – including good friends of ours who are taking care of their three children and a woman with advanced Altzheimer’s in a very small home. Some are families with money; others are struggling. The choice doesn’t seem to be any easier.

In my family we tend to dance around the question of “what if?” My mom tells us to “Call in Dr. Kevorkian” if she ever gets that bad; never mind that he’s dead and we’d never think of doing it anyway. My mother-in-law, who is in robust health, has long-term care insurance; my father-in-law, whose health is worse, does not.

It’s easy to question why Anne’s family tragedy happened and offer suggestions on how it could have been prevented. It’s harder though to see your way clearly when it happens to you. Maybe we boomers need to spend more time planning for the end game, even if it means asking tough questions.

14 thoughts on “How do we manage the end game?

  1. This is an unfortunate situation where a perfect storm of events culiminated to make it all overwhelming. A tragic outcome, but one that may have been prevented if we get realistic about our inability to all of a sudden become nurses/doctors to our ailing family members, use resources that are available to us or, if not, brainstorm and get resourceful. Nursing homes and other healthcare facilities are there and we just need to identify the right one and use them, sell assets if required, and let the experts take care of our loved ones. That doesn’t mean we stop loving them, don’t visit them, or completely let go of everything; rather, we become part of a solution that is realistic. And that solution will be unique to every unique person and family — and it will take advance work to identify it. That could be in-home care, a nursing home, sharing responsibilities with other family members so no one is forced to lose their beloved careers, and even looking to support groups for ideas. No one should feel alone in this … people just have to be willing to see that this is a situation that needs to be addressed now, planned for (and sacrifices made now where needed), and discussed honestly and openly with those who are involved. To your comment about someone who wants to call someone like “Dr Kavorkian,” we all want to have a certain quality of life and that means different things to different people. When my time comes, I will be sure to have a will and advance health directives in place (I already have these at 53 yrs old), as well as someone to ensure all *my* wishes are honored … whatever they may be.

  2. I am Cathy’s mother-in-law and want to express my feelings concerning nursing homes. I took my aging mother (91) into my home to live. She had dementia. My dear husband was willing to have her in our small beach home and I will always be grateful to him for wanting her and helping me with her. I did hire a home helper three times a week to assist me and take her out for part of the day. One day, after returning from her day with Rosalie, my mother’s hip broke and down she went before my eyes. She ended up in the convalescence wing of a nursing home after surgery and because her hip did not heal properly, she was there three months. She refused to walk after the break even though I told her I could no longer take care of her, but her fear of falling prevented her from even trying. And so she was put in the nursing home wing which she desperately did not want. This nursing home was one of the best and I was there almost every day even though it was a good forty minutes from my home. But unfortunately, mistakes were made, and I cannot imagine what would have happened if I had not been there as often as I was. One in particular was when my mother was falling asleep when eating – the one thing she did enjoy, and I insisted that something was wrong. The attitude was that may mother had an “attitude” problem and not to worry. The RN advised me of this and I was furious!! I insisted on a doctor looking at her and after that was told the doctor agreed it was an attitude problem And so I told them I would sue them for neglect if they did not take some tests to see what was wrong. The blood tests showed a high degree of urinary tract and kidney infection and her body was filled with toxins, therefore the constant sleeping and inability to stay awake to eat. My mother passed away there after 18 months, and needless to say, I was sad that the end of her life could not have been in a better environment. My point is that the best nursing homes are not great!! Perhaps a visit to one will show you how they operate and how sad it is to see the lineup of patients in wheelchairs, hoping to see a loved one visit them. I am not sure what the answer is, but I would opt for in-home care if possible. Nursing homes are very expensive and Medicare does not pay for this. As for me, I hope I can take care of my husband for the rest of his life and as for me, who knows what the future holds, but at least I do have long-term insurance and it will pay for care in the home.

  3. Not many of us will have the same choices to make as we all come from different size families, cultures, and economic situations. I lost my Dad at the same time that I was going through a divorce a few years ago. My Mom was 83 at the time. I am the youngest of 7, 6 of whom are still living. Towards the end of my Dads life I had the blessing of being able to spend a lot of time together with him. He had worked for the Federal Gov’t for almost 40 years and had a solid retirement and health plan package. We talked a lot about his life and the struggles and joys that filled it. Towards the end he would wake up and say “Really?! I’m awake again?” to which I told him that yes, he wasn’t done yet. He died of cancer, multiple myeloma just after his 82nd birthday, in April.

    He and my Mom were married for 58 years. My Mom misses him every day. He planned well for her, knowing that she may be here long after he had passed. This is becoming less and less of an option for people who are under the age of 55. Chances are that those of us, who are still employed, have had less than stellar financial planning on their side. Even if you have had great planning, the market certainly didn’t follow through on our goals.

    My Mom has fallen ill and over the past year has had surgeries, hospital stays, rehab stays, and even nursing home (short term/rehab) stays. My oldest brother has moved back into my parents house with me, and we are doing all that we can. There are so many different battles to talk about. The role reversals, which you must be prepared for of child taking care of parent and so on, are difficult discussions to have with an independent woman/nurse who has raised you.

    Why am I giving you too much information? Because there is no such thing. As I said, everyone has their own story and situation. Have the conversation with your parents, siblings, spouses, or significant others NOW. You do not want to have it in the lobby of an emotionally filled waiting room during soccer, hockey, college, end of year reporting, or everyday busy times. Do it now. Start a conversation, start a plan for your parents as well as yourselves.

  4. At the ripe age of 80 that is my worst nightmare. I pray that it never happens to me but if it should I would prefer going into an assistant living that is connected with a religious organization because hopefully it would make a difference. I definitely would not burden my children with such a difficult task that is 24/7 every day.

  5. Put me in a comfortable religious assistant living facility.

  6. Mom, Lois and Frank, thanks so much for adding to the discussion. These are the kinds of talks I hope to stir with my blog. Would love to hear from others in the sandwich generation and their parents — have you thought about what would be best for all of you if the unthinkable happens?

  7. Thelma & Louise in a rented convertible. I’d even pay the extra $5.00 insurance on the rental!

    Just Kidding… sort of.

    • Just reread this. I’m saying this for myself and not any parent or in-law, if ever there is one. Just wanted to be clear. Sorry.

  8. I experienced first hand what it’s like to live in a household that cares for one if it’s own who suffers from Alzheimer’s.
    When I was a boy my maternal grandmother became stricken with this horrible disease. She had been living with us so I witnessed her complete downfall, and a shift in the family dynamic.
    Difficult is an understatement. I didn’t really grasp the full severity of what was happening to her as, every day, a little piece of her was lost. I certainly never understood the incredible pressures that were put on the family as her health deteriated. I will never know how that experience shaped me, and shaped my family – certainly the relationship between my mom and dad, but the stress was palatable, the arguments plentiful, and things never really returned to normal.
    At first it was kinda amusing to my childhood friends and I. We’d get a kick out of my grandma’s silly statements and quick forgetfulness. She chased my best friend around the house with a three foot zucchini from the garden. But eventually it became sad and just plain confusing to me.
    My dad in particular would blow his top. He has always been a man of “passion”, but his grumblings became more severe, more omnidirectional. Mind you, I was just a little boy, but the tension was real and I was scared.
    My mom did what any daughter would do, she took care of her ailing mother. There was no other option, we didn’t have much money and they would never kick a family member to the curb. We all took care of Grandma.
    As she slipped further away from us, bizarre became dangerous so my mom put her in a home. Grandma never forgot my name – I was the only one she asked for until the very end.
    It is exhausting to care for someone with Alzheimer’s, and it should not be taken lightly. It can break a marriage and cause havoc in anyone’s home. I was forced to learn about sympathy and giving, but also fear, anxiety, and regret.
    If presented with a similar scenario with my aging parents or in-laws I don’t think I’d make the same decision as my parents did. Sorry mom and dad.

    • Paul, thanks so much for these poignant memories of your grandmother.

      • Paul – I remember what went on when your grandmother came down with Alzheimer’s – at the time no one really understood what was going on and it was hard to see such a sweet wonderful woman turn into someone we just couldn’t help. I do know that if that were to happen to me I would not want my children to have the burden of caring for me – very difficult choices to make.
        Your words and memories were poignant.

  9. My answer to what I will do with my aging parents is…it depends. I would not be willing to have my MIL live with us ever. She has enough money to have full time live-in help for a while, but my guess is that when her hip breaks or something else happens, she will end up in a nursing home. I’d go to visit her out of obligation, but wouldn’t be willing to give up what I’d have to for her to be living in my home. My father and his wife–I’d take either of them in with us rather than have them in a nursing home. They both have long-term health insurance and, having gone through it with their parents, are very cognizant of not being a burden to us, their children. However, I’d give up most everything to have them in a home environment and not in the kind of places I’ve seen or that Lois described.

    Having cared for my mom, at their home, when she was dying of pancreatic cancer 9 years ago, I know how exhausting it is to have a parent who is ailing. Luckily I have 3 siblings who live close by and imagine that between us and them and their spouses, we would all be taking care of my father and his wife.

    All that said–if the diagnosis for either is Alzheimer’s or dementia, I recognize that there comes a time when it’s not safe for the person to be in a home situation and they are better off in a level-4 care facility. My dad and his wife have financial provisions set aside for this, my MIL doesn’t.

    We talk about this quite a bit, with them and as siblings and in-laws. I’m often struck by the notion that aging and death are inevitable, so you think we’d all be the best at it–when in fact we act as if we will live in good health forever, and never want to talk about what we KNOW is going to happen. Why aren’t we able to deal with this better as a society?

  10. Amy, thanks for your thoughts. I too have been ruminating on aging and death, especially after Steve Jobs passed away and I listened to his inspiring words. We should not only live each day to its fullest but also plan to make our inevitable decline as graceful, comfortable and joyful as possible.

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