How do I prepare for the death of my mother?
July 7, 2009 5:51 PM   Subscribe

how do i prepare for the death of my mother?... for which i am completely, utterly, unprepared.... more inside...

my mother has been diagnosed with ALS (lou gehrig's disease) -- and yes, there has been a second opinion. it's a pretty firm diagnosis. in addition, she has four herniated discs in her back and neck, so life is kind of sucking for her right now, and, obviously, will get much worse.

she's in early to mid-stages -- so we've got time left, death is not imminent -- but i am a WRECK.

before you ask -- yes i am in therapy.

but i'm wondering if you fellow mefites have good suggestions for books or other materials that might be good for me in dealing with preparing for her death -- for being able to be strong through this long process. how to cope and maintain through possibly years of degeneration -- how to find the joy in all this, when right now, all i see is pain and death and loss.

thanks for any help you might be able to offer...
posted by unlucky.lisp to Health & Fitness (24 answers total) 28 users marked this as a favorite
My dad died of cancer over the span of 8 years or so, so I know what you're talking about. Therapy was great--no, one can never be really prepared for such a thing, but the preparation helped, immensely. The therapy also helped me to accept that things were just going to suck for a while, and really suck sometimes. There's no joy in that, but there is a level of healthy acceptance.

What helped me the most was to figure out what Dad needed to die happily--not what I needed from him, but what he needed from me. I tried to get him to talk about death, to tell me all the stories he'd never told me before, to talk about his childhood and his father and all that stuff, but that's what I needed, not what he needed, and I figured out pretty quickly that all the death talk was making him sad.

In our case, what Dad needed was to know that we'd all be just fine without him. He wanted to hear all about how good my job was going, how I'd met the girl I was going to marry, how I had great friends and a nice place to live and all that. He didn't have any sort of cliched "bucket list" or need to confess anything or make any final dramatic statements--he just wanted to know that we'd be OK.
posted by MrMoonPie at 6:02 PM on July 7, 2009 [8 favorites]

It is a gift. Everyone dies - that's a given, but we don't have the luxury of knowing when that's going to happen, so you have the opportunity to work with this ahead of time. My own mother probably has about six months. I spent time seeking out help (and to those who have listened and helped me, thank you all) and a lot of time talking to my mom. I found peace in knowing that when the time comes I know what her last wishes are, what documents she has and so on.

A few weeks back, I sat down with her with a MiniDV camera and asked her questions a la StoryCorps. I've stepped up communication among our immediate family, and done my best to shed pretense and drama. I'm taking the actual mourning in pieces, as is she.

It's hard, I know, but remember that it is still a gift.
posted by plinth at 6:04 PM on July 7, 2009

You'll feel much less shitty about your mother's death if you and she make the most of her remaining time alive.
posted by kldickson at 6:07 PM on July 7, 2009

Tuesdays with Morrie may be of interest to you. It is a story of a renown sociologist's experience with ALS.

I would recommend much more highly Morrie Schwartz's own works on living while dying and sociology.
posted by McGuillicuddy at 6:14 PM on July 7, 2009 [1 favorite]

My grandfather died of ALS in 1988, so I get a little where you're coming from.

Don't waste a second, even if you have time. Tell her you love her as often as you can, take her out, build memories.
posted by roomthreeseventeen at 6:19 PM on July 7, 2009

My mother died 4 years ago of cancer. She was sick for about a year and a half and we all knew that there wasn't going to be a good outcome given specifics of her diagnosis. I spent as much time with her as I could. Did the things she wanted in terms of closure - many of which were practical - like helping sort out physical things. She spent a lot of time teaching my father the things he'd need to cope when she was gone - laundry, cooking, etc. They took a great deal of pleasure in cooking together - and both regretted not doing that years earlier. Trying to do the things you might not have done otherwise and would regret not doing will help.

I was the person really in charge of orchestrating her care and communicating decisions and it was very hard. I found there were times, especially when she was in the ICU and it hadn't yet been determined that it was time for hospice care only that I felt very panicky and just wanted to be anywhere but there - and I couldn't leave because my father and everyone else was depending on me to be the strong organized one.

Making time for yourself to cry on a friend or partner's shoulder, talk to a therapist, do something physical, care for yourself - it will help. It will still be terrible at times and ok at others. You'll want to be clear with your mother about her end of life preferences. Obviously you're years from this but talk to hospice earlier than later - they are wonderful and very clear-eyed about things at a time when you'll need that. Are you expecting to be deeply involved in your mother's care? If so you may want to go to doctor's appointments with her and have her give her doctors permission to talk to you. I'm assuming you're local - if not it all gets harder. The gift of a long illness is time to reminisce, to hear all the old stories and to say goodbye. It doesn't compensate for watching someone you love deteriorate and suffer but it can still be very precious and comforting.

I'm sorry you and your mother are facing this.
posted by leslies at 6:19 PM on July 7, 2009 [3 favorites]

It's hardest at first - when our daughter was diagnosed with cancer, we were utterly destroyed and thought we would not survive if she were to die. But you take it day to day - there are lots of medical appointments, help your mom stay organized, set up a good routine, stop to enjoy the little things, and her, as best you can.

This won't really make things better, or prepare you for it. But don't worry today about the future, because no matter what you do it's going to come. I spent weeks going to bed every night wondering if my daughter would survive the night. But every morning that I woke up and was able to hold her, was a miracle, and even when it hurt, it was precious time.

You'll never be okay with it, or accept it. But you want to focus on building really good memories, and making her life the best it can be. When we were told Vivi's cancer had returned and there was nothing more to try, we talked with the end of life care docs about the decisions parents make at that time. We discussed which decisions parents often regret, and which they later feel were good decisions. These are really helpful topics to talk through with a grief counselor, your mother and her docs and, at the appropriate time, the hospice/palliative/end of life care folks. There will be a huge array of support deployed for your family at that time.

Obviously, losing a child is different from losing a parent, and we didn't have to face many of the challenges you will face with this. But I think the idea to take things one day at a time, craft some positive memories, and keep telling yourself you CAN do it, are universal. People are a lot stronger than they think - we can always withstand more than we anticipate we could.

I'm so sorry you've received this news, and wish peace and good health on your family. Feel free to MeMail me if you want to talk.
posted by bunnycup at 6:20 PM on July 7, 2009 [4 favorites]

I can't link to a relevant entry, but I know that longtime mefi MD ikkyu2 says that Stephen Hawking cannot possibly have ALS, as he has many times outlived anyone else's lifespan after affliction with the condition. Hawking has refused to allow his diagnosis to be made public but there are other conditions which could explain his neurological problems. Thus holding him up as an example to ALS patients may not be helpful.
posted by zadcat at 6:21 PM on July 7, 2009

My dad was diagnosed with ALS last year this time.

Get involved with your local ALS Association - there you will meet lots of other people who are going through, or have gone through, what you are going through. They will have good insight. There will be the annual Walk to Defeat ALS coming up on October; sign up for it and go; mingle a bit.

And, don't waste a goddamn second with your mother. Do everything you can with her, now, tomorrow and the day after.
posted by jabberjaw at 6:40 PM on July 7, 2009

Enjoy every moment you have together. Don't worry about tomorrow. Close up any old wounds. Accept that death is the price we pay for life.
posted by gjc at 6:42 PM on July 7, 2009

A friend of mine died from ALS a couple of years ago. From a practical viewpoint, have the tough conversations about the future early on so that you're not always chasing resources months after they are needed - you don't need that added stress of trying to organise practical stuff when you're already in emotional turmoil.

From the research I did for my friend, I gather that most ALS patients choose to reject long-term ventilation and opt for palliative care once that becomes an issue - so to some extent prognosis is a quality of life issue as well as a medical one.

In respect of terminal conditions in general and ALS in particular, the smaller the patient's world becomes, the more important little things become to the patient. Realising that when you're feeling frustrated and powerless can help - those little gestures of love, compassion and affection are not less valuable just because they are not heroic or spectacular.

And take time to care for yourself.
posted by Lolie at 6:49 PM on July 7, 2009

What beautiful and heartfelt responses here. Having lost both my mom and my 19 year old goddaughter to cancer within six months of each other, I echo the comment that the time you have left is a gift.

With my mom, we said all the things we needed to say to each other, forgave each other for the stupid things we had done that were hurtful and were truly at a place of love and peace when she passed away. It's been three years almost since her death and all I've ever felt is BIG unconditional love from her.

And with my beloved almost-like-my-own-child goddaughter, I cried more than I ever have in my life over losing her. What helped me through it was writing it out in my journal (and blog), spending time with her and knowing that the connection we shared was permanent.

You will find your own way through this. I loved the comment upthread from Mr. Moonpie who sought to find out what his dad needed and helped make that a reality. That is a wonderful gift to give your parent (or anyone in this situation).

I send you and your family peace as you walk this path together.
posted by Mysticalchick at 6:49 PM on July 7, 2009

Just a couple of quick things from experience:

One day she will be talking; the next day, her speech will be slurred; and then she will not be able to speak at all. It will happen fast. So, talk to her; real conversations, about things she loves to talk about, while you still can. Take a video camera, and preserve for posterity the stories you've heard a hundred times before. But, please don't stop talking to her just because she can't speak; continue to have conversations with her even when she's stuck with a voice machine.

And one day she will be walking with a cane, then with a walker, then she'll be confined to a wheelchair. I understand she has herniated discs, but enjoy the mobile life with her, and don't stop enjoying the mobile life with her even when she's in a motorized wheelchair. It happens fast.

And, feed her. Feed her the most wonderful, sweet, fatty, meaty, tasty foods that you can. Her most favorite foods, every meal. Because one day she will eat, then soon enough she'll be on a liquid diet, and not long after she'll rely on a feeding tube. It happens just too fast.

She will gradually lose the ability to do anything for herself, from eating to using the bathroom to crawling into bed. Never let her think that she is a burden on you or anybody.

This will help you cope; the lack of regret that you will have - knowing that you are doing all you can, while you can - this is one of the best things you can do to prepare for her eventual death.

There are a lot of things to prepare for; feel free to MeFiMail me for any questions, or just to talk about it.
posted by jabberjaw at 7:12 PM on July 7, 2009 [6 favorites]

My heart goes out to you and your mom. Maybe reading other peoples' personal experiences dealing with ALS from the time of diagnosis forward might help a bit.
posted by Oriole Adams at 7:51 PM on July 7, 2009

I second the suggestion that you record her story - have her voice or her image or both somewhere that you can keep and treasure in the future. My dad died fairly suddenly recently and I am so sad that I won't get to hear his voice again. My sister saved his voicemails but I would have never thought to do that.
posted by pinky at 8:29 PM on July 7, 2009

My mother died of cancer 13 (!) years ago. She was diagnosed at Easter and died in October. Our situation was a bit weird because of geography, but the short version is that I had about 5 weeks with her during the summer before I had to say goodbye for the last time (we still talked by phone as long as she was able, but I'll tell you that walking out of that hospital room was the hardest thing I've ever had to do).

So, to your question. Make the most of your time together. Do things you like to do together, or do things she likes even if you don't. If she's up for it and you're able, do the things she always wanted to do but couldn't before. Take pictures and movies together. Talk. Talk about the good times and the bad times you've had together. Talk about family history (we did this with my grandmother with a video camera pointing at one of her beloved plants). Talk about funny stories concerning family members that will be useful at family get togethers when you're remembering your mom. Find out as much as you can about who she is as a person, above and beyond her role as your mom. If it's an issue, talk about money, inheritance, and any family politics issues she thinks may crop up after she's gone. Find out how she wants to be remembered, both in a memorial and after. Don't forget that her death will set in motion a lot of complex family and social issues as people around you deal with her death in their own, sometimes frustrating ways.

More or less in that order.

This is the hardest part of all: remember that death is a part of life. We all die. Help her live out her life and die as the person she is. (My mother loved life and had a particular fascination with the times life goes awry. Soon after she died, we held a casual memorial service for her in the mountains. I walked up to a cliff with her ashes and reached my hand in to toss a handful to the hills, I tossed ... and the ashes blew back in my face... good god she would have LOVED that. And it brings me great peace to know how much she would have laughed at the absurdity of it all.)

Best wishes to your family. Feel free to MeFiMail me if you want.
posted by socratic at 8:42 PM on July 7, 2009

Echoing everything folks have said here.

One of the things we did when my mum was dying, but still able to travel in a car and be in a wheelchair, was take her into a more natural environment. We are lucky that we live about an hour's drive from a lovely wheelchair accessible spot in the mountains by a river/waterfall. Sick and/or frail people in cities rarely have the opportunity to get out of an urban environment. I have no idea if there's scientific evidence for the therapeutic effects of nature, but it sure helped my mum. Conversations with her in that spot were more relaxed and happy. Her pleasure in my sons, then 2 and 5, racing around the trees and throwing stones into the river, helped both of us then and is a precious memory now. If there's somewhere away from concrete and asphalt where you can take your mother, I highly recommend it.
posted by angiep at 9:48 PM on July 7, 2009

I don't think there's anything you CAN do, or rather, there's nothing you can do that time won't. Value the time you have.

My friend's dad died of ASL a few months ago, and I gave him similar advice from when my mom died. His blog is DEFINITELY not to everyone's taste, but it helped him get through it to keep an online diary. Here's the link if you're interested. The further back you start from, the more it has to do with is father.

I'm very sorry to hear about this. I wish you luck.
posted by OrangeDrink at 9:56 PM on July 7, 2009

I'm truly sorry for what you are going through and what you will watch your mom go through. I don't have a similar story, as my own mother died very suddenly. She was 47, I was 24, and she died one night after a blood clot traveled into her lung. Here one day, gone the next with no warning whatsoever. So coming from the experience of losing someone suddenly, without preparation, I do have a bit of advice. I know that it's small comfort now, when you are confronted with your mother's pending death, but there are some things you will eventually be grateful for. You have this information and you can make choices. You don't have to regret things you said or didn't say, you don't have to regret time you didn't spend with her. You don't have to wonder what she would have wanted to do, or have done, or what her fondest wishes were. You don't have to guess about why she made certain decisions and didn't do other things.

I know that even given the diagnosis, the loss will feel sudden and shocking and numbing. But now that you have this information, you can do your best to talk to your mother, make her feel loved and comfortable. Ask her things and help her with whatever she wants. And let her in on your life, your hopes and dreams and anxieties. Find an online (or real life) support group to share stories and know you aren't alone. It will be tough to watch your mom go through a terminal illness, but you can arm yourself with information and help your mom while also helping yourself. You will do your best, and that's all you can do, and it will be good enough but you can't stop the grief. That's one of life's certainties. Just be kind to yourself.
posted by JenMarie at 10:44 PM on July 7, 2009

I have just searched for the book that I read (in one sitting) on the plane about death and preparing for death. I can't find it and I can't remember the title. I was stunned to learn my Mother was dying and she was in her 80's! Why was I stunned--it seems silly now. I guess I felt she could never die and that she would live to be at least 100 (that was her ardent wish).

When I was searching for the book that I read I saw that there are many many good looking books on the subject. I was SO grateful for the book I read because it described what a dying person does and doesn't necessarily need. A dying person certainly never needs to be told that they will get better when clearly they won't. The book I read was so good at explaining that our western way is to deny death and the poor dying person can't deny it. It places them in a terrible position of not being able to discuss what is truly in their hearts when everyone around them is saying "you look great! you're going to beat this thing!" The most major thing I learned from the book I read was that the dying person needs "psychological air" and should be allowed to talk as much as they want about whatever they want even if it causes us some discomfort. Your Mother is going to have the added feature of shutting down like a machine and won't be able to express herself. Best to get her to share her inner feelings with you asap so that you both can feel she got everything said that she wanted to say.

Death makes us so squeamish--especially here in the US. In other countries death is not as sanitized and hidden. I am forever grateful to the nurse on duty in the hospital where my Mom died. I REALLY wanted to go home and she pretty much insisted that I stay. I was just so nervous and didn't think I could "handle" being there. The nurse said "oh yes, you're going to want to be here exactly when she makes the is for you." She was so right. I am grateful that I was right there when my Mom drew her last breath. I learned that the dying person often thinks of places that they consider home and it serves as a metaphor. In the end I asked my Mom ...was she on the farm again? She smiled and I could tell in those final moments she was sitting on the tractor in her grandad's arms.

God Bless heart goes out to you.
posted by naplesyellow at 8:57 AM on July 8, 2009

Advice: Check out hospice options in your area before you need it.

Book suggestion: Who Dies?: An Investigation of Conscious Living and Conscious Dying by Stephen and Ondrea Levine

I wish you and your mother wellness in the midst of dying, grief, and letting go.
posted by mmw at 12:42 PM on July 8, 2009

So sorry for the diagnosis. My grandmother died of ALS when I was 12.

My mom and her mother took a trip to Europe together, while things were early stage. Don't know how far your mother has progressed, but I think each of them really enjoyed the time together.

Talk. Be present. Because as many people have said, there will soon be a time where she will not be able to anymore. And she'll be pointing at a board to spell out words, or maybe with new fangled technology some new way to communicate, but it won't ever be the same once her voice goes.

Hospice and your local ALS association now now now now. They were an ENORMOUS help to my mother--she met other people who had similarly lost mothers/fathers to ALS and provided a great network of support, from meals to simply someone who had gone thru this--and then after my grandmother died my mom stayed involved, helping another woman through the same process. Hospice does NOT mean you're giving up, it means coming up with a plan to make sure the person is as comfortable as possible. The number 1 thing people ALWAYS say about hospice is "I wish I had known about this sooner."

Also: respite care for you and whoever else is caring for your mother. You will get exhausted and tired and cranky and it's then that you need a break, someone to take over--even just for 24 hours so you can just take a breather.

And, as a physician: at some point, talk with your mother about what she wants done. This does not have to be tomorrow, but you MUST know and SHOULD respect what interventions she wants done. Your neurologist can probably provide more specifics but:
* do I want interventions long-term? short term? what do these terms mean to me? a week? a month? a year?
* do I want a feeding tube? (short term this goes thru the nose, long term they put a hole from the skin directly into the stomach)
* how do I want to be cared for? Nursing home? At home with 24 hour care?
* do I want to be on a ventilator/breathing tube in my throat?
* do I want CPR or invasive monitoring (tubes in the throat, the large veins, the bladder, the rectum) if I get sick?
* do I just want to be comfortable if my lungs eventually start to give out or I develop an infection?

There is no right answer to these questions, only options and preferences. But so often I have seen children/spouses/loved ones of a dying person rush their loved one to the emergency department because they are starting to actively die--changes in their breathing, not taking food or water--and the health care proxy/loved one demands many invasive things to be done for the patient, when it turns out the living will and all the documentation states the person never wanted it to begin with, and we're really just causing suffering. It's scary, absolutely, to see someone dying. Talk with your family, discuss this stuff, so that when the time comes, you're on the same page and can allow your mother a calm and peaceful passing that respects what she wants, because YOU will be speaking FOR her. It is her wishes you are representing, not your own preferences or beliefs.
posted by gramcracker at 1:52 PM on July 8, 2009 [2 favorites]

What jabberjaw said. My dad didn't have ALS, but he had a rare disease where the talking and the walking went within a year. We didn't know/realize that. Definitely RECORD HER VOICE while you still can.

From what I have heard from everyone else on the planet, I have a totally different reaction to it from everyone else, so odds are you won't be me. But I'll let you know, just in case.

In my experience of my dad slowly dying for ten years, well...I got used to it, I guess. I pretty much went through the stages of grieving while he was alive, to the point that when he finally died, I just felt relieved. To this day I don't feel "oh, so sad, my dad died" because it felt like he had been gone for years before it was official. My dad most likely had "locked in" syndrome (i.e. "there's no way to tell if someone's still compos mentis when they can't talk or hear you too well or move much"), so I felt like he wasn't "in there" for the last few years he was technically alive. I got numb to the constant losses, so I was very used to the idea of death.
My mom, on the other hand, would tell you the opposite from me. She clung like hell and still felt like he was still himself and still in there, and it is still all very fresh for her.
Third opinion: my ex-boss's mom died of ALS (I think) and she said that while she was used to the situation deteriorating, it was still a surprise once it actually happened.

I guess you won't know which one of these you are until it hits, though.

gramcracker has a point: my dad supposedly didn't want to be strung out alive, but when he started to fail and they had to call the ambulance, my mom still felt like there was hope, and he ended up being strung along on the vent for 2 years.
posted by jenfullmoon at 4:35 PM on July 8, 2009

I've been blessed to never have an experience like this so far, but I can speak a bit on actually preparing for the death of a loved. This is probably years off, but I hope it's still helpful.

Someone I am close to knew their parent was going to die and spent many months working through issues, preparing, really getting in touch with their feelings about it, talking with the parent about death, and so on.

Then, the parent died.

At that moment, none of the preparation mattered. The fact that the parent was very, very old; that the parent died peacefully; that there were no things intentionally left unsaid; that they had spent hours reading about death and coming to terms with it -- these all fell by the side of the overwhelming grief that is losing a loved one.

Please keep in mind, that even when you do prepare for it, you will not be prepared. At the very best, you will not be shocked by how strange and unexpected your reaction is -- whatever it may be.
posted by Deathalicious at 12:21 AM on July 9, 2009

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