Caregiver take two
October 25, 2013 12:46 PM Subscribe
My mom and I spent the past two years as full-time caregivers for my dad until he died this summer. We were just getting back on our feet when she was diagnosed with a terminal disease two weeks ago. What now?
My dad was diagnosed with Alzheimer's three years ago (though he had it for much longer). Two years ago I left my job to help my mom as a full-time caregiver for him. This lasted until this summer, when he died.
We were starting to put our lives back together. My mom was going out with friends, I was looking for a new job and began socializing and going to church again. Before becoming a caregiver I hadn't lived in this area for about ten years, and know very few people around.
Two weeks ago my mom was diagnosed with cancer. Yesterday we found out that it has already spread throughout her back. The prognosis is very poor. We don't know how much time she has left, but it's likely in the weeks-to-months timeframe, and probably on the shorter end of that. She is in a fair amount of pain which we are controlling through medication. On Monday we are going to meet with an oncologist and I plan on addressing the pain issue with him.
So a couple of questions:
1. What can I do to make my mom's remaining time as pleasant as possible? I know pain control is very important and I'd like to hear suggestions about different ways to manage the pain. Beyond that, though, I'd like suggestions of helping her stay engaged, positive, and interested in things. She's generally a realistic yet positive person who is interested in a variety of things, which helps. She's getting bored watching so much TV, so I'd like suggestions of other activities that would be easy to do in bed or sitting with minimal movement. Today we went to the bank and afterwards I drove her through a nearby park. She enjoyed the drive but when we got back home it was hard for her to get into the house, even with help.
2. For those of you who have lost parents, is there anything you wished you has asked them or talked to them about?
3. What can I do to help myself? I haven't worked since leaving my job to be a caregiver for my dad (though I have done volunteer work in my field). I was job searching, but that has been put on indefinite hold. Fortunately we are in a position where finances are not an immediate concern. I'm looking for ideas for keeping myself mentally healthy, but other tips (like how to make cooking as simple as possible) are also appreciated.
4. Any legal things we should take care of?
5. What else am I not thinking of?
My dad was diagnosed with Alzheimer's three years ago (though he had it for much longer). Two years ago I left my job to help my mom as a full-time caregiver for him. This lasted until this summer, when he died.
We were starting to put our lives back together. My mom was going out with friends, I was looking for a new job and began socializing and going to church again. Before becoming a caregiver I hadn't lived in this area for about ten years, and know very few people around.
Two weeks ago my mom was diagnosed with cancer. Yesterday we found out that it has already spread throughout her back. The prognosis is very poor. We don't know how much time she has left, but it's likely in the weeks-to-months timeframe, and probably on the shorter end of that. She is in a fair amount of pain which we are controlling through medication. On Monday we are going to meet with an oncologist and I plan on addressing the pain issue with him.
So a couple of questions:
1. What can I do to make my mom's remaining time as pleasant as possible? I know pain control is very important and I'd like to hear suggestions about different ways to manage the pain. Beyond that, though, I'd like suggestions of helping her stay engaged, positive, and interested in things. She's generally a realistic yet positive person who is interested in a variety of things, which helps. She's getting bored watching so much TV, so I'd like suggestions of other activities that would be easy to do in bed or sitting with minimal movement. Today we went to the bank and afterwards I drove her through a nearby park. She enjoyed the drive but when we got back home it was hard for her to get into the house, even with help.
2. For those of you who have lost parents, is there anything you wished you has asked them or talked to them about?
3. What can I do to help myself? I haven't worked since leaving my job to be a caregiver for my dad (though I have done volunteer work in my field). I was job searching, but that has been put on indefinite hold. Fortunately we are in a position where finances are not an immediate concern. I'm looking for ideas for keeping myself mentally healthy, but other tips (like how to make cooking as simple as possible) are also appreciated.
4. Any legal things we should take care of?
5. What else am I not thinking of?
Oooof... I am so, so sorry, lharmon. Life can be so cruel, and I wish you weren't going through this.
I lost my much-beloved mother-in-law to a very, very aggressive, fast-moving cancer a few years ago. Things I wish I'd known:
- Contact hospice sooner rather than later. Those people are SAINTS and are often the difference between a good death and a bad one.
- Don't worry about getting food/water/nutrition into your mom, at any point. Let her eat (or not eat) whatever the hell she wants.
- Discuss her end of life wishes and get 'em in writing, so that YOU are not forced into making painful decisions while in a crisis situation.
- Your mom might enjoy a tablet PC, like an iPad or a Kindle Fire - you can operate them with limited mobility, they're good on battery life, and she can do all sorts of interesting things on 'em without leaving bed.
- It depends on her personality, but maybe she'd like to sit with you and record (on either audio or video) some of her most cherished memories, so that she can reminisce about them AND so that they'll live on.
- Re: pain management... again: hospice, hospice, hospice. They're the only ones who are consistently, conscientiously able to make the seriously ill and dying truly comfortable.
Again, I'm so sorry you're going through this.
posted by julthumbscrew at 1:07 PM on October 25, 2013 [5 favorites]
I lost my much-beloved mother-in-law to a very, very aggressive, fast-moving cancer a few years ago. Things I wish I'd known:
- Contact hospice sooner rather than later. Those people are SAINTS and are often the difference between a good death and a bad one.
- Don't worry about getting food/water/nutrition into your mom, at any point. Let her eat (or not eat) whatever the hell she wants.
- Discuss her end of life wishes and get 'em in writing, so that YOU are not forced into making painful decisions while in a crisis situation.
- Your mom might enjoy a tablet PC, like an iPad or a Kindle Fire - you can operate them with limited mobility, they're good on battery life, and she can do all sorts of interesting things on 'em without leaving bed.
- It depends on her personality, but maybe she'd like to sit with you and record (on either audio or video) some of her most cherished memories, so that she can reminisce about them AND so that they'll live on.
- Re: pain management... again: hospice, hospice, hospice. They're the only ones who are consistently, conscientiously able to make the seriously ill and dying truly comfortable.
Again, I'm so sorry you're going through this.
posted by julthumbscrew at 1:07 PM on October 25, 2013 [5 favorites]
I am sorry to hear about your mom and dad.
I have not lost my parents yet, but I just recently went out of my way to thank them for being them, for giving me a good childhood and upbringing, and for giving/teaching me a good foundation for being a successful adult. If you have good reason to thank your mom for the big things, do it as soon as you can so she can live, even briefly, with that knowledge.
As sort of a combination entertainment for mom and wished to talk about, I recorded my grandmother telling family stories that have been since copied and giving to generations of her relatives. She had a great time remembering and telling the stories and we take comfort in hearing them. She even sang the lullabies she sang to us as babies.
Make sure her will is in order. If you are not an only child, talk to your siblings about financial matters and the funeral. I would ask your mom about the funeral too and what she prefers, but that can be hard for some.
Don't forget to hug your mom everyday.
posted by JohnnyGunn at 1:09 PM on October 25, 2013 [1 favorite]
I have not lost my parents yet, but I just recently went out of my way to thank them for being them, for giving me a good childhood and upbringing, and for giving/teaching me a good foundation for being a successful adult. If you have good reason to thank your mom for the big things, do it as soon as you can so she can live, even briefly, with that knowledge.
As sort of a combination entertainment for mom and wished to talk about, I recorded my grandmother telling family stories that have been since copied and giving to generations of her relatives. She had a great time remembering and telling the stories and we take comfort in hearing them. She even sang the lullabies she sang to us as babies.
Make sure her will is in order. If you are not an only child, talk to your siblings about financial matters and the funeral. I would ask your mom about the funeral too and what she prefers, but that can be hard for some.
Don't forget to hug your mom everyday.
posted by JohnnyGunn at 1:09 PM on October 25, 2013 [1 favorite]
When my parents were really close to death I told them stories from my childhood. I talked to them about all the fun things we did as a family. I talked about our families quirks and just the mundane stuff of life that I fondly remembered.
posted by obol at 1:36 PM on October 25, 2013 [4 favorites]
posted by obol at 1:36 PM on October 25, 2013 [4 favorites]
I am so sorry to hear about your parents.
I definitely second getting her involved in a hospice or palliative care program--there is nothing those folks don't know about symptom management, pain control, and accommodations to pursue hobbies, etc. Getting palliative care doesn't necessarily mean withdrawing treatment for her cancer, it just acknowledges the likely terminal nature of the disease and a focus on comfort and high quality of life.
1) Seconding a tablet with games, etc. If she likes the outdoors, think about what you can do to bring the outdoors to her--when my mother was in home hospice care, we put a bunch of bird feeders on/near a sliding glass door so she could watch the birds. When she had energy, she identified species and observed behavior. When she didn't have energy, she just liked to watch them. We also put a bunch of planters outside the door so she could admire the foliage (it was spring). Agree with recording anything she'd like to talk about, if she feels like it.
Also, ask her about her priorities for her time. My mother had a long time to get used to the idea that her cancer was not curable, but only six weeks of "this is really it". She had some things that she was very focused on doing (getting her final PhD student through an important publication and making sure his work transitioned to another lab).
2) I didn't know much about my parents' early life together and my father turned out to have a lot of funny stories about their dating life/early marriage. My mother died when I was still in college and I never thought to ask her about things that were not yet part of my life--like motherhood, her academic career, work-life balance, etc. I'm not sure I would have understood the conversation if we'd had it, but now that I'm wrestling with all of those things, I wish I had the benefit of her input.
3) You can start to develop your support system in your current area a little bit--your mother will need a lot of your time, but it's unlikely she'll need constant supervision at first, and hospice nurses and volunteers can do some of that work as well. So you can continue to go to church and socialize a bit. It's important for you to have support as well. Depending on where you live there may be a support group that you might benefit from.
4) if there is any estate planning she wants to do, now is the time. If she is willing to make you her health care proxy to make medical decisions once she is not able to, that will make things much easier later on. Also, make sure you have the information for insurance policies, bank accounts, mortgages, safe deposit boxes, email passwords, important addresses, etc.
posted by The Elusive Architeuthis at 1:37 PM on October 25, 2013 [1 favorite]
I definitely second getting her involved in a hospice or palliative care program--there is nothing those folks don't know about symptom management, pain control, and accommodations to pursue hobbies, etc. Getting palliative care doesn't necessarily mean withdrawing treatment for her cancer, it just acknowledges the likely terminal nature of the disease and a focus on comfort and high quality of life.
1) Seconding a tablet with games, etc. If she likes the outdoors, think about what you can do to bring the outdoors to her--when my mother was in home hospice care, we put a bunch of bird feeders on/near a sliding glass door so she could watch the birds. When she had energy, she identified species and observed behavior. When she didn't have energy, she just liked to watch them. We also put a bunch of planters outside the door so she could admire the foliage (it was spring). Agree with recording anything she'd like to talk about, if she feels like it.
Also, ask her about her priorities for her time. My mother had a long time to get used to the idea that her cancer was not curable, but only six weeks of "this is really it". She had some things that she was very focused on doing (getting her final PhD student through an important publication and making sure his work transitioned to another lab).
2) I didn't know much about my parents' early life together and my father turned out to have a lot of funny stories about their dating life/early marriage. My mother died when I was still in college and I never thought to ask her about things that were not yet part of my life--like motherhood, her academic career, work-life balance, etc. I'm not sure I would have understood the conversation if we'd had it, but now that I'm wrestling with all of those things, I wish I had the benefit of her input.
3) You can start to develop your support system in your current area a little bit--your mother will need a lot of your time, but it's unlikely she'll need constant supervision at first, and hospice nurses and volunteers can do some of that work as well. So you can continue to go to church and socialize a bit. It's important for you to have support as well. Depending on where you live there may be a support group that you might benefit from.
4) if there is any estate planning she wants to do, now is the time. If she is willing to make you her health care proxy to make medical decisions once she is not able to, that will make things much easier later on. Also, make sure you have the information for insurance policies, bank accounts, mortgages, safe deposit boxes, email passwords, important addresses, etc.
posted by The Elusive Architeuthis at 1:37 PM on October 25, 2013 [1 favorite]
Oh, this is hard.
For yourself — remind yourself that you're glad to do this for your mother, and that you'll be glad all your life that you did. At least, this was our experience going through this with our parents. You say you're a church-goer; I have to say that our church family and close friends made all the difference to us. And there always seems to be one or two people nearby who are going through similar trials, and this helped us.
It's really great that you don't have to worry much about finances. Let those worries take their proper place in the future.
You already know a lot given your experience with your father.
Best,
posted by willF at 1:41 PM on October 25, 2013
For yourself — remind yourself that you're glad to do this for your mother, and that you'll be glad all your life that you did. At least, this was our experience going through this with our parents. You say you're a church-goer; I have to say that our church family and close friends made all the difference to us. And there always seems to be one or two people nearby who are going through similar trials, and this helped us.
It's really great that you don't have to worry much about finances. Let those worries take their proper place in the future.
You already know a lot given your experience with your father.
Best,
posted by willF at 1:41 PM on October 25, 2013
My mom was diagnosed with stage four breast cancer that had metastasized to her spine almost two years ago. After two doctors somehow failed to diagnose her cancer over the course of a year, she wound up in an ER in severe pain, thinking she may have kidney stones, but it turned out to be tumors instead. Fortunately medicine has been able to drastically slow the tumor growth so she is still with now, although the spinal tumors will win out eventually. You may have more time than you think, and I really hope you do.
Getting started on an SSRI as soon as possible has helped (they take weeks to start being effective). We're also lucky enough to live in a state with medical marijuana easily available, which helps with appetite, helps with depression, and serves as another form of analgesia along with her opiates.
My mom worked full time until she was diagnosed and had a lot of trouble adjusting to not only the diagnosis, but all of the free time she suddenly found herself with. Being a gadget nerd, I got my mom a Kindle, an iPad, and a Roku. She reads in the backyard, watches TV and foreign films on Netflix, and plays Words with Friends constantly with friends and family, making heavy use of the in-game chat. We also got her a kitten to snuggle up with (it will have a home with us when she's no longer with us). The iPad has also been really helpful managing the ridiculous amount of pills and patches she needs to keep track of (we use an app called Pillboxie, which lets you take pictures of the pills to help identify them).
I'm sorry you're going through this. I wish I could be more helpful.
posted by Thoughtcrime at 2:57 PM on October 25, 2013 [4 favorites]
Getting started on an SSRI as soon as possible has helped (they take weeks to start being effective). We're also lucky enough to live in a state with medical marijuana easily available, which helps with appetite, helps with depression, and serves as another form of analgesia along with her opiates.
My mom worked full time until she was diagnosed and had a lot of trouble adjusting to not only the diagnosis, but all of the free time she suddenly found herself with. Being a gadget nerd, I got my mom a Kindle, an iPad, and a Roku. She reads in the backyard, watches TV and foreign films on Netflix, and plays Words with Friends constantly with friends and family, making heavy use of the in-game chat. We also got her a kitten to snuggle up with (it will have a home with us when she's no longer with us). The iPad has also been really helpful managing the ridiculous amount of pills and patches she needs to keep track of (we use an app called Pillboxie, which lets you take pictures of the pills to help identify them).
I'm sorry you're going through this. I wish I could be more helpful.
posted by Thoughtcrime at 2:57 PM on October 25, 2013 [4 favorites]
I'm sorry that you have this very sad situation to manage. First, be good to yourself, take care of your physical and spiritual needs. I'm going to repeat what has been said above: hospice, hospice, hospice.
We had a wonderful experience with Hospice when my mother-in-law died a month ago. Hospice dealt with her physical needs, including pain medication. They also helped my husband and me make all the preparations that we could do ahead of time, from funeral planning to legal matters to making sure we had some time off from the care. The group, which included a nurse, a social worker, a spiritual counselor and several nurses aids, was caring and had a lot of emphaty for everybody needs.
We used the Hospice suggested by the Hospital, but I'm aware that there are hospice groups offered by counties and they provide free services.
posted by francesca too at 3:57 PM on October 25, 2013
We had a wonderful experience with Hospice when my mother-in-law died a month ago. Hospice dealt with her physical needs, including pain medication. They also helped my husband and me make all the preparations that we could do ahead of time, from funeral planning to legal matters to making sure we had some time off from the care. The group, which included a nurse, a social worker, a spiritual counselor and several nurses aids, was caring and had a lot of emphaty for everybody needs.
We used the Hospice suggested by the Hospital, but I'm aware that there are hospice groups offered by counties and they provide free services.
posted by francesca too at 3:57 PM on October 25, 2013
That sucks - I'm sorry you're both going through this.
Your mom's prognosis shouldn't be ignored, but lots of people outlive their prognoses - they're just an average (or a mean, I've had it explained to me but I don't recall which is which right now.)
My main regret about the death of my wife was that I was too afraid to talk to her about HER death, although we were slightly ahead of the game by being able to talk about death in general. Add me to the chorus of people saying not to be afraid to talk about hospice. But also talk about death. It's on your minds anyway, you might as well talk about it. Seriously - you will regret it if you don't at least try to talk about it. And if she doesn't want to talk about it, that's fine too.
The one thing that my second wife regrets after her mother's death was that she never showed her mom her (then-unpublished) novel. If you have something that you've always meant to share now is the time. Or your awesome ideas. Or things that are great experiences that you had with or because of her.
Take care of yourself so you can take care of your loved ones. For me that meant taking the dog on a long walk at least twice a day plus some swimming. Walking is really good for you, even aside from the exercise part. Your mom will directly benefit because you'll be a better caregiver and she'll probably also appreciate that she can see that you can take care of yourself. If she has any reasonable things that she's always said you should do, such as write a sonnet or learn about orchids or exercise daily, then give it a try. (Unreasonable things like write the great American novel, discover a new orchid or become an ultramarathoner should be ignored.)
When she dies (whenever that happens) consider whether or not making funeral arrangements is comforting to you. Organizing is not comforting to me and I was fortunate to have other people step in to take of that for me. If you don't want do it and your mom has a community then let them help you with it, otherwise you can seek out a professional. If you feel best being in charge of that, take charge of it and don't feel bad. People freak out when someone dies (you've probably already seen that) so it's helpful to know your plan ahead of time.
My best wished to you and your family. From what I can see here, your parents raised you right. You're good people.
posted by smartyboots at 11:09 PM on October 25, 2013
Your mom's prognosis shouldn't be ignored, but lots of people outlive their prognoses - they're just an average (or a mean, I've had it explained to me but I don't recall which is which right now.)
My main regret about the death of my wife was that I was too afraid to talk to her about HER death, although we were slightly ahead of the game by being able to talk about death in general. Add me to the chorus of people saying not to be afraid to talk about hospice. But also talk about death. It's on your minds anyway, you might as well talk about it. Seriously - you will regret it if you don't at least try to talk about it. And if she doesn't want to talk about it, that's fine too.
The one thing that my second wife regrets after her mother's death was that she never showed her mom her (then-unpublished) novel. If you have something that you've always meant to share now is the time. Or your awesome ideas. Or things that are great experiences that you had with or because of her.
Take care of yourself so you can take care of your loved ones. For me that meant taking the dog on a long walk at least twice a day plus some swimming. Walking is really good for you, even aside from the exercise part. Your mom will directly benefit because you'll be a better caregiver and she'll probably also appreciate that she can see that you can take care of yourself. If she has any reasonable things that she's always said you should do, such as write a sonnet or learn about orchids or exercise daily, then give it a try. (Unreasonable things like write the great American novel, discover a new orchid or become an ultramarathoner should be ignored.)
When she dies (whenever that happens) consider whether or not making funeral arrangements is comforting to you. Organizing is not comforting to me and I was fortunate to have other people step in to take of that for me. If you don't want do it and your mom has a community then let them help you with it, otherwise you can seek out a professional. If you feel best being in charge of that, take charge of it and don't feel bad. People freak out when someone dies (you've probably already seen that) so it's helpful to know your plan ahead of time.
My best wished to you and your family. From what I can see here, your parents raised you right. You're good people.
posted by smartyboots at 11:09 PM on October 25, 2013
« Older Cobalt 60, Vaughn Bode and Cheech Wizard | Why do some US states put county names on their... Newer »
This thread is closed to new comments.
4) Consult a lawyer and make sure wills/trusts are in good shape; they reflect your mother's intentions and will stand up in court.
Best wishes.
posted by benzenedream at 1:05 PM on October 25, 2013 [1 favorite]