Raging against the dying of the light
December 22, 2018 6:49 AM Subscribe
I'm looking for resources, tips, experiences in dealing with an elderly parent who is making life kind of miserable for those who are becoming increasingly responsible for her care, i.e. my sister. She has her funeral service planned out to the last song but who is mostly in denial/not cooperating in planning what happens between now and then.
My mom is 82. She's had atrial fibrillation which is more or less being managed, and suffered a very bad ankle fracture 3 years ago that took a year to recover from and which has left her mobility somewhat impaired. Just a couple of days ago she suffered another fall and broke a rib. She is a lifelong professional musician, piano teacher, and organist and she refuses to retire. She is also starting to suffer memory loss, and we don't know if it's typical 80-year-old senility or something more serious. We lost my dad to Alzheimer's 9 years ago so it's a very sensitive topic.
My sister lives a few blocks away and shoulders a lot of the burden of helping her out when she needs help. My niece and her bf and their infant live in an upstairs apartment at my mom's house, but they're young and busy and so it's still my sister who is picking up the brunt of the burden. And it is driving her to the point of emotional breakdown because my mom is getting increasingly rude, snarky, not welcoming of help, etc. etc. The latest fall is a bit of a minor crisis point, because at first my mom was not wanting to go to the doctor, and then after the diagnosis was not accepting of the fact that it just might not be a good idea to play the Sunday and Christmas eve services this year, or to, you know, drive around doing last minute Christmas stuff with a broken rib and hoped up on narcotic pain relievers. My sister wound up taking her car keys. My mom has been saying unkind things about my sister behind her back to other family members.
I've agreed to have a serious sit-down talk with mom and sister while I'm in town for a few days for the holiday. Is there any hope that these tensions can be relieved? I feel so bad for my sister; this has been going on for years (she also picked up a big burden when my dad was sick, and the sacrifices she made while my mom was recovering from the broken ankle were huge...)
She and my dad were pretty good about the legal side of things, living wills, long-term care insurance, powers of attorney, trust planning for my adult disabled brother. But she's kind of stuck her head in the sand about the logistics of this transitional phase before it gets to that.
My mom is 82. She's had atrial fibrillation which is more or less being managed, and suffered a very bad ankle fracture 3 years ago that took a year to recover from and which has left her mobility somewhat impaired. Just a couple of days ago she suffered another fall and broke a rib. She is a lifelong professional musician, piano teacher, and organist and she refuses to retire. She is also starting to suffer memory loss, and we don't know if it's typical 80-year-old senility or something more serious. We lost my dad to Alzheimer's 9 years ago so it's a very sensitive topic.
My sister lives a few blocks away and shoulders a lot of the burden of helping her out when she needs help. My niece and her bf and their infant live in an upstairs apartment at my mom's house, but they're young and busy and so it's still my sister who is picking up the brunt of the burden. And it is driving her to the point of emotional breakdown because my mom is getting increasingly rude, snarky, not welcoming of help, etc. etc. The latest fall is a bit of a minor crisis point, because at first my mom was not wanting to go to the doctor, and then after the diagnosis was not accepting of the fact that it just might not be a good idea to play the Sunday and Christmas eve services this year, or to, you know, drive around doing last minute Christmas stuff with a broken rib and hoped up on narcotic pain relievers. My sister wound up taking her car keys. My mom has been saying unkind things about my sister behind her back to other family members.
I've agreed to have a serious sit-down talk with mom and sister while I'm in town for a few days for the holiday. Is there any hope that these tensions can be relieved? I feel so bad for my sister; this has been going on for years (she also picked up a big burden when my dad was sick, and the sacrifices she made while my mom was recovering from the broken ankle were huge...)
She and my dad were pretty good about the legal side of things, living wills, long-term care insurance, powers of attorney, trust planning for my adult disabled brother. But she's kind of stuck her head in the sand about the logistics of this transitional phase before it gets to that.
Research and set up support for your mother that is not your sister. If she needs somebody taking her places or with housework this does not have to fall on your sister. Start with local charities that support carers and social workers associated with medical providers that can point you in the right direction.
posted by koahiatamadl at 8:04 AM on December 22, 2018 [4 favorites]
posted by koahiatamadl at 8:04 AM on December 22, 2018 [4 favorites]
Other resources to investigate include the Meals on Wheels and Visiting Nurses organizations in her community. There will be a social worker at the hospital where she was treated for her broken rib who can help. Next medical event, look into getting a prescription for a temporary stay at a rehab center (which will also have a social worker). It would give your sister respite and it might also convince your mother that life in an assisted living facility would have some nice benefits, including social engagement with the staff and other residents. Medicare will pay for some number of days. Good luck.
posted by carmicha at 8:20 AM on December 22, 2018 [1 favorite]
posted by carmicha at 8:20 AM on December 22, 2018 [1 favorite]
I’m here to provide a little support... hopefully some of my family’s experience will help yours.
The rude, snarky thing happened (is happening) with my mom as well. I attribute some of it to mom losing a bit of calibration on her interpersonal communication skills as her social circle shrank - she just isn’t talking to as many people regularly as she used to, her vision isn’t as good so she misses facial cues, et. I think the rudeness is also her fear and anger seeping out around the issue of needing more help.
She has spent her life taking care of others. She says “I’m the parent, I’m supposed to take care of you” despite now living in a nursing home.
She also wants to maintain some semblance of control over her life. She wants me to take care of her finances so she doen’t have to worry, but then will worry and repeatedly ask me about minor transactions or endlessly confirm the amount of her SS benefits. When I ask about the root of this, she says it’s because she feel that she should know what’s going on and be involved in her workings of her life.
Things that have helped me and mine:
-Having a conversation with her about how she envisioned this stage of her life, both in terms of having an ideal situation and also having contingency plans in place. “We know you want to live at home and we want that for you, too. If moving into assisisted living is necessary, we know that wouldn’t be ideal, but what are your priorities in that scenario and how can we support you?”
-More direct support for her from outside of the family.
-Keeping her involved in decision making, or at least make her feel like she is still involved, even if you (respectfully) game the system and only offer her one choice.
-A couple of therapy sessions for me to figure out coping techniques as mom lashed out at me.
-Making sure that the folks who can’t be hands on in the support are still contributing to the effort in various ways: $$, showing up for big events, handling paperwork, etc
-Acknowledging to myself that this is the new normal. She is more emotionally erratic and seemingly has fewer filters. I do my best to stay supportive and keep showing up.
And speaking of showing up, I have to head to the airport to go see mom.
Best of luck. This is a hard stage for all involved...
posted by jenquat at 8:40 AM on December 22, 2018 [15 favorites]
The rude, snarky thing happened (is happening) with my mom as well. I attribute some of it to mom losing a bit of calibration on her interpersonal communication skills as her social circle shrank - she just isn’t talking to as many people regularly as she used to, her vision isn’t as good so she misses facial cues, et. I think the rudeness is also her fear and anger seeping out around the issue of needing more help.
She has spent her life taking care of others. She says “I’m the parent, I’m supposed to take care of you” despite now living in a nursing home.
She also wants to maintain some semblance of control over her life. She wants me to take care of her finances so she doen’t have to worry, but then will worry and repeatedly ask me about minor transactions or endlessly confirm the amount of her SS benefits. When I ask about the root of this, she says it’s because she feel that she should know what’s going on and be involved in her workings of her life.
Things that have helped me and mine:
-Having a conversation with her about how she envisioned this stage of her life, both in terms of having an ideal situation and also having contingency plans in place. “We know you want to live at home and we want that for you, too. If moving into assisisted living is necessary, we know that wouldn’t be ideal, but what are your priorities in that scenario and how can we support you?”
-More direct support for her from outside of the family.
-Keeping her involved in decision making, or at least make her feel like she is still involved, even if you (respectfully) game the system and only offer her one choice.
-A couple of therapy sessions for me to figure out coping techniques as mom lashed out at me.
-Making sure that the folks who can’t be hands on in the support are still contributing to the effort in various ways: $$, showing up for big events, handling paperwork, etc
-Acknowledging to myself that this is the new normal. She is more emotionally erratic and seemingly has fewer filters. I do my best to stay supportive and keep showing up.
And speaking of showing up, I have to head to the airport to go see mom.
Best of luck. This is a hard stage for all involved...
posted by jenquat at 8:40 AM on December 22, 2018 [15 favorites]
From a comment I made on a different AskMe that is somewhat related: "long ago I read that family members have a choice: they can continue to be the husband or the wife or the child or the parent of an ill person OR they can become the caretaker. The point was that caretaking is exhausting and also really difficult to do while maintaining the relationship you have with the person you love who is ill. That jibes with my personal experience." Agreeing with others who have said you need to get outside help for your mother. She won't like it; that is not the point.
My niece and her bf and their infant live in an upstairs apartment at my mom's house, but they're young and busy and so it's still my sister who is picking up the brunt of the burden.
Do they live there rent-free? Or do they pay market rent? If the idea is that they are supposed to be offering some support as well, sit down with them and your sister and find out how they can help in concrete ways. Maybe that is picking up groceries for your mother as they shop for themselves. Maybe it is something else. We are all fucking busy; they can help. Also, it is possible your sister might be willing to trade some mom duty for some baby-minding time, if that would make things easier.
Of course you should ask your mother what she wants and try to honour that to the best of the family's ability. (My elderly, ill dad wants me to go live with him and take care of him. That will never happen, and he knows that so he has stopped asking. I monitor his health through caretakers and visit. I live in another country.)
Your goal cannot be to make your mother happy because humans are notoriously hard to keep happy. But if y'all can agree to do your best as a family to help her maintain her comfort and you can agree as a family that your sister needs relief and get her some relief, even if your mother is against that. No one should have to take care of both their ill parents. Let her be a loving daughter instead of an exhausted caretaker if you possibly can.
Also, send your sister away if she wants. Give her a vacation for a week if you can or just give her a full week of not being responsible for your mother and do that every 8 weeks or so. Your sister is doing really hard work, as you know, after doing really hard work for your family with your dad. I have no idea how she is managing; ask her and find out what your sister needs as well as your mother to feel okay. Find out every single resource available to help your family. Good luck!
posted by Bella Donna at 9:21 AM on December 22, 2018 [8 favorites]
My niece and her bf and their infant live in an upstairs apartment at my mom's house, but they're young and busy and so it's still my sister who is picking up the brunt of the burden.
Do they live there rent-free? Or do they pay market rent? If the idea is that they are supposed to be offering some support as well, sit down with them and your sister and find out how they can help in concrete ways. Maybe that is picking up groceries for your mother as they shop for themselves. Maybe it is something else. We are all fucking busy; they can help. Also, it is possible your sister might be willing to trade some mom duty for some baby-minding time, if that would make things easier.
Of course you should ask your mother what she wants and try to honour that to the best of the family's ability. (My elderly, ill dad wants me to go live with him and take care of him. That will never happen, and he knows that so he has stopped asking. I monitor his health through caretakers and visit. I live in another country.)
Your goal cannot be to make your mother happy because humans are notoriously hard to keep happy. But if y'all can agree to do your best as a family to help her maintain her comfort and you can agree as a family that your sister needs relief and get her some relief, even if your mother is against that. No one should have to take care of both their ill parents. Let her be a loving daughter instead of an exhausted caretaker if you possibly can.
Also, send your sister away if she wants. Give her a vacation for a week if you can or just give her a full week of not being responsible for your mother and do that every 8 weeks or so. Your sister is doing really hard work, as you know, after doing really hard work for your family with your dad. I have no idea how she is managing; ask her and find out what your sister needs as well as your mother to feel okay. Find out every single resource available to help your family. Good luck!
posted by Bella Donna at 9:21 AM on December 22, 2018 [8 favorites]
You mention her playing Sunday and Christmas eve services, could you talk to her church to see if there's anything they might be willing to do to help. Rides to service or having people call once a week to help with socializing is the kind of things I'm thinking of.
Since this is your mom's 2nd injury, it might be a good idea to safety proof the house for her. There's some type of physical therapist that came out and helped my mom figure out how to get in the shower safely, what kinds of safety stuff to install and looked around for how to prevent falls (moving furniture, getting rid of small rugs) after she had a hip replacement. Her doctor might know how to find someone to do this.
I think having a sit down with your mom and being frank about how stressful this is for you sister. Explain that your sister isn't trying to control her or boss her around. It's that it's illegal and dangerous to drive on pain killers. She could end up in a wreck and hurt herself or someone else or end up in jail. It's normal for your mom to want to control her own life but it's time to talk over the problems she's having and how to help her with them.
Be honest, even when it sucks and let your mom know that you want her to do the most she can but you'll step in if it's dangerous to her or others. If she knows you're doing your best to help her live her life the way she wants, it'll help with the times that you or your sister need to step in. Best of luck to you all.
posted by stray thoughts at 3:53 PM on December 22, 2018 [1 favorite]
Since this is your mom's 2nd injury, it might be a good idea to safety proof the house for her. There's some type of physical therapist that came out and helped my mom figure out how to get in the shower safely, what kinds of safety stuff to install and looked around for how to prevent falls (moving furniture, getting rid of small rugs) after she had a hip replacement. Her doctor might know how to find someone to do this.
I think having a sit down with your mom and being frank about how stressful this is for you sister. Explain that your sister isn't trying to control her or boss her around. It's that it's illegal and dangerous to drive on pain killers. She could end up in a wreck and hurt herself or someone else or end up in jail. It's normal for your mom to want to control her own life but it's time to talk over the problems she's having and how to help her with them.
Be honest, even when it sucks and let your mom know that you want her to do the most she can but you'll step in if it's dangerous to her or others. If she knows you're doing your best to help her live her life the way she wants, it'll help with the times that you or your sister need to step in. Best of luck to you all.
posted by stray thoughts at 3:53 PM on December 22, 2018 [1 favorite]
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posted by shew at 7:23 AM on December 22, 2018 [7 favorites]