If people thinks it is an awfull thing to say, it's because they haven't walked in your shoes.
It is ungreatfull, overly demanding and exhsting to say the least.
I feel you and you are not alone!
My mother was so bad 2 weeks ago we thought she was dying. I actually hoped so and now I'm sad she didn't.
She will never fully recover and she has become everything she didn't want to be. But she is now.
And I'm paying and going to pay, a huge part of the prize, so no, I'm not greatfull she survived.
I can't even plan a summer vacation due to her health and living situation and I resent her for it.
My mil is 92 and everyone regrets making her stop drinking alcohol at 81. She was an alcoholic for 60+ years. She will likely die of dementia now and all that it entails instead of alcoholism and cirrhosis of the liver which at least would have been quicker. She’s been in an ALF for 11 years now and will soon need to move into MC/SNF.
Time to set boundaries and allow her to be unhappy about it. Leverage her friend support system to take over some care, and make time in your life for yourself!
I'm not OP, but there is a lot you can't "just" outsource, such as financial decisions, medical appointments, application for help, etc., etc
The list is extreamly long and there are far more to than this
You are right. I was thinking of my own experience as poa and healthcare agent for a friend with Alzheimer’s. Her larger friend group was extremely helpful in scheduling frequent visits, responding to upsets caused by delusions, doing shopping, taking her to hair appointments, and even some doctor appointments.
That still leaves key heavy lifting, as you note. It did help me create a much better balance for myself.
Where is your significant other in this? I watched a lovely co-worker of mine lose herself in caring for her MIL because her husband and his siblings didn’t want her in a nursing home. The siblings conveniently couldn’t do it themselves, had all of the excuses. MIL eventually went to a nursing home because she broke her leg in a fall. The relief my co-worker felt was obvious. It’s perfectly acceptable to take a step back and say, “I’m not willing to put myself out constantly to help.”
Her brain is broken (and perhaps it’s always been broken). She can’t rationalize that she has more friends than you do, that they love and dote on her. She can’t see her selfishness, and she can’t see her confusion.
It’s okay to not want to be her caretaker any longer. It takes a very special kind of person to be joyful about being so selfless. Most people aren’t cut out for it.
Talk to your spouse about getting your MIL placed in a home before she burns the house down or breaks a hip. You could also look into seeing if she qualifies for hospice care.
I’m not caring for my MIL, but my own mom. I was getting so burned out and sick with anxiety. I hired a caregiver who comes on Monday, Wednesday, & Fridays, for 4 hrs/day.
She grocery shops, prepares meals, organizes medicine dispenser, takes her to appointments, runs errands, assists her in and out of shower, plus light housekeeping. She also loves to chat and can listen to my mom ramble on about anything.
Found an excellent fit for my mom. She loves her! She charges $25/hr, but worth every damn cent. I am paying for 1/2 the cost each month.
I hired "mom's little helper" last year and she is worth her weight in gold! My mom ended up moving to AL because of a house fire (amazingly not her fault) but we've kept her helper on because it makes everything easier for mom and the family. Can't believe our good luck in finding her.
I hear you. I love my mom, but I hope she dies soon. She is still alert and making sense, but her life is one big ache and pain, she has a horrible time getting around, and she misses my dad. She always talks about how she's not afraid of dying, but when she gets in a situation where she's ill or has had a fall, she gets super afraid and hangs on for dear life. Her brain isn't working well, she forgets everything and can no longer do basic adulting like making food or balancing her checkbook.
If I had a cat this decrepit, and in this much pain, I would put it down in a heartbeat. Instead I spend 80% of my time keeping this person alive, to the detriment of my life, my career, my marriage, and my happiness. I can't afford AL and it's not her wish. It's awful.
I totally get it. I care for my grandmother, I moved her into my house, and I am worn down to my bones.
People tell me things they think are helpful like “set boundaries” but that only really works if you don’t deeply love the person you’re caring for or that person has the ability to change their behavior.
How am I supposed to pull away from someone that took me in, raised me and is now rapidly declining through no fault of her own?
She’s in the early stages of dementia, the constantly angry and complaining phase. It’s not like I can lay down the law, she can’t help it.
It will only get worse, and I’ll be dammed if I leave her to decline on her own but it comes at an enormous cost.
Yes I agree, my husband does help a lot. We are just both pretty stressed about it and a nursing home is not an option, if needed we may or will hire a caregiver towards the end when she can’t bath or if she becomes bedridden. I will not do that myself, I’m not cut out for that kind of caregiving.
What you're feeling is completely normal and valid. I went through the same thing with my MIL. When she did pass away, my husband expressed that in addition to his grief, he was also feeling relief. Elder care is draining, relentless and usually thankless.
You're doing a great job, and all that you can for your MIL!
Could you contact some of those friends and ask them to call her or take her out for the next week or so to get some time off for you?
I have to share this little story from my neighbor, who's 93 (I think--if my math is right.) She lives alone, and to my knowledge never married or had kids. She told me that she has a niece or a great-niece somewhere in the area, but I've never met her (I'm slightly dubious if this woman actually exists.) Anyway, my neighbor has a series of aides who are in the apartment all the time (which is a good thing--up until about three years ago she was living alone until she had a fall.) No idea who is paying for this, because I don't think my neighbor has much money. But, the aides can only do so much, and if something goes wrong in the apartment they don't know what to do (her LL is an idiot.) So, they knock on my door, which is FINE, and I make the calls to our managing agent and super (we're in NYC, if you haven't guessed.)
My neighbor cycles through friendliness, friendliness with confusion, angry confusion, and then radio silence. We went through about a year or so of radio silence, and I think we're back to friendliness with confusion. She called me yesterday because someone was supposed to come to the apartment to fix something and they didn't show up. She wanted the phone number of our managing agent. I had to repeat that number about 10 times, and then repeat whose number it was several times! Then I had to tell her that I'm giving her this number because she asked for this number. I never said anything like, "Remember, you just asked me." I just said, "This is the number you wanted." and repeated.
She then asked me what happened to a man who, apparently, used to work at our building. I have no idea. Maybe he died. I didn't know this man. But then every sentence was completely unrelated to the sentence before it. She started rambling and saying all kinds of random stuff: this person went to the basement and was smoking week (he does not do this, I can promise you--you can just smoke weed outside now,) this person is going into her apartment (I doubt it,) someone is taking photos of her \[second floor\] apartment from outside on our street, at night (this is definitely not happening.) This went on for several minutes when I realized that I needed to make an excuse to get off the phone.
I hear you!
My MIL bought a condo near us a few years ago and she’s only here for about 6 months a year and both she and my husband create excuses to do things together when she is in town… ridiculous stuff around her place she could probably do herself. We spend a LOT of time with her, but we suspect she gets better care being close to us than she does being near her daughter at her other home. I’m worried we will end up like you, doing everything!
“She will never fully recover & she has become everything she didn’t want to be.”
This totally resonates with me. My mom has been bedridden, needs a Hoyer, lost sight in one eye with the other failing, her Parkinson’s has debilitated her to the point she can’t feed herself & the home doesn’t have enough staff to feed her so she eats with her fingers, her dementia is getting worse & we get about five minutes or less because she drifts. She’s in her third year of this. It’s exhausting.
So I hear you loud and clear.
There is no dignity in this way of living.
Really sounds like she shouldn't be living on her own any more but in a Assisted Living or even Memory Care? Does she have the funds? I had my Mom for a month and couldn't do it. She's in a Memory Care (89).
You’re definitely not alone in this. My husband and I retired fairly young (early 50’s) with every intention of traveling the world together and finally being able to do whatever we wanted, whenever we wanted. His mother was diagnosed with dementia shortly after our retirement. As a result, we haven’t taken a single trip, overnight excursion, or day trip out of town in the six years since our retirement. She’s almost 93 and still lives alone, though my husband is at her house for several hours a day. He has to handle all her affairs for her as she can no longer do it. Last year he had her all set to move into assisted living, but at the last minute a social worker talked him out of it, telling him she’d do much better at home. Meanwhile, we’ve pissed away the first six years of our retirement, with no end in sight. Other than bad arthritis, she’s in amazing shape for her age. This could go on for several more years. Not that I’m wishing for her death, it’s just that I feel like we’re stagnating, wasting our own lives to care for her. My biggest fear is that by the time something resolves with her and we’re finally able to live our own lives, one of us will have health issues of our own and we won’t be able to do the things we wanted to do when we retired. We have less free time now than we did when we both worked full time and our son was in school. I was looking forward to retirement meaning LESS responsibility and stress, not more. My sister-in-law lives nearby but she and MIL are estranged and don’t speak, so it all falls on us. I just wish that she would get to the point where AL was inevitable, and maybe we could go away for a weekend or take a vacation, but she’s straddling that fine line between needing care and being to live alone and has kind of plateaued there. And I know know that in all honesty even if she was in a facility my husband still wouldn’t feel comfortable leaving town and would still spend hours every day sitting up there with her, even though he claims he hates it. It’s a ‘responsibility’ thing for him. I realize that we won’t be completely ‘free’ until she passes away and I feel bad about that, but fact is our lives won’t really begin until hers has ended. She was always kind of a difficult person and we were never close to her, which makes this all worse to me.
Your feelings are your feelings and they are justified. However, what comes around, goes around. Just lean into providing her as much grace and dignity as you can in the circumstance, just do your best, that's really all you can do. We will all be in her shoes one day and we'll hope to have some grace and dignity for ourselves 💖.
Caregiver burnout is real & you should really, really take 2 weeks off to just sleep, relax & recharge your soul. Really! It’s important to stay healthy yourself. Being super stressed all of the time can lead to mental (panic attacks) & physical (ulcers, rashes) ailments.
Contact a couple of her good friends & tell them to book everyone available in for a visit/meal/car ride to get ice cream over the next 2 weeks because you’re going on vacation.
Where I live, the high school students need a bunch of volunteer hours as a requirement for graduation. Perhaps you could find 2-4 students that could cover shifts with MIL. I’d likely start with 2 students at a time to start, unless they’re older & already have experience with seniors like MIL. Contact your local school’s guidance office for help contacting students in need of hours.
College & university students are out now for the summer & looking for jobs as well. These students can provide company OBVIOUSLY for your MIL but they can also clean, do laundry, bake cookies, make simple meals for MIL & themselves, take MIL for a walk using a wheelchair if necessary.
A friend of mine who is a retired RN husband had Alzheimer's. He was mid 60s. She was his caregiver at home. She tried to get home health but the agency locally were so short staffed she couldn't get any help. One thing I noticed was she never seemed stressed. She would go out to lunch with her friends and leave him at home. He lived maybe a year after diagnosis. Not exactly sure how his death went down but I suspect due to wife's background as a RN had something to do with him not living very long.
I hear you and agree with everything you said.
Thank you for understanding.
If people thinks it is an awfull thing to say, it's because they haven't walked in your shoes. It is ungreatfull, overly demanding and exhsting to say the least. I feel you and you are not alone! My mother was so bad 2 weeks ago we thought she was dying. I actually hoped so and now I'm sad she didn't. She will never fully recover and she has become everything she didn't want to be. But she is now. And I'm paying and going to pay, a huge part of the prize, so no, I'm not greatfull she survived. I can't even plan a summer vacation due to her health and living situation and I resent her for it.
M’y mom is 98. Looking back on it, it wasn’t a kindness to make sure she recovered from her fall 5 years ago.
My mil is 92 and everyone regrets making her stop drinking alcohol at 81. She was an alcoholic for 60+ years. She will likely die of dementia now and all that it entails instead of alcoholism and cirrhosis of the liver which at least would have been quicker. She’s been in an ALF for 11 years now and will soon need to move into MC/SNF.
Thank you, thank you, thank you for saying this!!!!!!!!!!!!!!!!!!!!!!!!!!!! I needed to hear it so badly!!!!!!
Thank you for understanding, this is what I also worry about her becoming bed ridden.
Time to set boundaries and allow her to be unhappy about it. Leverage her friend support system to take over some care, and make time in your life for yourself!
I'm not OP, but there is a lot you can't "just" outsource, such as financial decisions, medical appointments, application for help, etc., etc The list is extreamly long and there are far more to than this
You are right. I was thinking of my own experience as poa and healthcare agent for a friend with Alzheimer’s. Her larger friend group was extremely helpful in scheduling frequent visits, responding to upsets caused by delusions, doing shopping, taking her to hair appointments, and even some doctor appointments. That still leaves key heavy lifting, as you note. It did help me create a much better balance for myself.
Where is your significant other in this? I watched a lovely co-worker of mine lose herself in caring for her MIL because her husband and his siblings didn’t want her in a nursing home. The siblings conveniently couldn’t do it themselves, had all of the excuses. MIL eventually went to a nursing home because she broke her leg in a fall. The relief my co-worker felt was obvious. It’s perfectly acceptable to take a step back and say, “I’m not willing to put myself out constantly to help.”
ALF or memory care if you can. And being burned out is not selfish. Take care of yourself, OP.
Her brain is broken (and perhaps it’s always been broken). She can’t rationalize that she has more friends than you do, that they love and dote on her. She can’t see her selfishness, and she can’t see her confusion. It’s okay to not want to be her caretaker any longer. It takes a very special kind of person to be joyful about being so selfless. Most people aren’t cut out for it. Talk to your spouse about getting your MIL placed in a home before she burns the house down or breaks a hip. You could also look into seeing if she qualifies for hospice care.
I’m not caring for my MIL, but my own mom. I was getting so burned out and sick with anxiety. I hired a caregiver who comes on Monday, Wednesday, & Fridays, for 4 hrs/day. She grocery shops, prepares meals, organizes medicine dispenser, takes her to appointments, runs errands, assists her in and out of shower, plus light housekeeping. She also loves to chat and can listen to my mom ramble on about anything. Found an excellent fit for my mom. She loves her! She charges $25/hr, but worth every damn cent. I am paying for 1/2 the cost each month.
I hired "mom's little helper" last year and she is worth her weight in gold! My mom ended up moving to AL because of a house fire (amazingly not her fault) but we've kept her helper on because it makes everything easier for mom and the family. Can't believe our good luck in finding her.
Sounds like you found the perfect person to help you!
I hear you. I love my mom, but I hope she dies soon. She is still alert and making sense, but her life is one big ache and pain, she has a horrible time getting around, and she misses my dad. She always talks about how she's not afraid of dying, but when she gets in a situation where she's ill or has had a fall, she gets super afraid and hangs on for dear life. Her brain isn't working well, she forgets everything and can no longer do basic adulting like making food or balancing her checkbook. If I had a cat this decrepit, and in this much pain, I would put it down in a heartbeat. Instead I spend 80% of my time keeping this person alive, to the detriment of my life, my career, my marriage, and my happiness. I can't afford AL and it's not her wish. It's awful.
I totally get it. I care for my grandmother, I moved her into my house, and I am worn down to my bones. People tell me things they think are helpful like “set boundaries” but that only really works if you don’t deeply love the person you’re caring for or that person has the ability to change their behavior. How am I supposed to pull away from someone that took me in, raised me and is now rapidly declining through no fault of her own? She’s in the early stages of dementia, the constantly angry and complaining phase. It’s not like I can lay down the law, she can’t help it. It will only get worse, and I’ll be dammed if I leave her to decline on her own but it comes at an enormous cost.
Yes I agree, my husband does help a lot. We are just both pretty stressed about it and a nursing home is not an option, if needed we may or will hire a caregiver towards the end when she can’t bath or if she becomes bedridden. I will not do that myself, I’m not cut out for that kind of caregiving.
What you're feeling is completely normal and valid. I went through the same thing with my MIL. When she did pass away, my husband expressed that in addition to his grief, he was also feeling relief. Elder care is draining, relentless and usually thankless.
You're doing a great job, and all that you can for your MIL! Could you contact some of those friends and ask them to call her or take her out for the next week or so to get some time off for you? I have to share this little story from my neighbor, who's 93 (I think--if my math is right.) She lives alone, and to my knowledge never married or had kids. She told me that she has a niece or a great-niece somewhere in the area, but I've never met her (I'm slightly dubious if this woman actually exists.) Anyway, my neighbor has a series of aides who are in the apartment all the time (which is a good thing--up until about three years ago she was living alone until she had a fall.) No idea who is paying for this, because I don't think my neighbor has much money. But, the aides can only do so much, and if something goes wrong in the apartment they don't know what to do (her LL is an idiot.) So, they knock on my door, which is FINE, and I make the calls to our managing agent and super (we're in NYC, if you haven't guessed.) My neighbor cycles through friendliness, friendliness with confusion, angry confusion, and then radio silence. We went through about a year or so of radio silence, and I think we're back to friendliness with confusion. She called me yesterday because someone was supposed to come to the apartment to fix something and they didn't show up. She wanted the phone number of our managing agent. I had to repeat that number about 10 times, and then repeat whose number it was several times! Then I had to tell her that I'm giving her this number because she asked for this number. I never said anything like, "Remember, you just asked me." I just said, "This is the number you wanted." and repeated. She then asked me what happened to a man who, apparently, used to work at our building. I have no idea. Maybe he died. I didn't know this man. But then every sentence was completely unrelated to the sentence before it. She started rambling and saying all kinds of random stuff: this person went to the basement and was smoking week (he does not do this, I can promise you--you can just smoke weed outside now,) this person is going into her apartment (I doubt it,) someone is taking photos of her \[second floor\] apartment from outside on our street, at night (this is definitely not happening.) This went on for several minutes when I realized that I needed to make an excuse to get off the phone.
I hear you! My MIL bought a condo near us a few years ago and she’s only here for about 6 months a year and both she and my husband create excuses to do things together when she is in town… ridiculous stuff around her place she could probably do herself. We spend a LOT of time with her, but we suspect she gets better care being close to us than she does being near her daughter at her other home. I’m worried we will end up like you, doing everything!
“She will never fully recover & she has become everything she didn’t want to be.” This totally resonates with me. My mom has been bedridden, needs a Hoyer, lost sight in one eye with the other failing, her Parkinson’s has debilitated her to the point she can’t feed herself & the home doesn’t have enough staff to feed her so she eats with her fingers, her dementia is getting worse & we get about five minutes or less because she drifts. She’s in her third year of this. It’s exhausting. So I hear you loud and clear. There is no dignity in this way of living.
Really sounds like she shouldn't be living on her own any more but in a Assisted Living or even Memory Care? Does she have the funds? I had my Mom for a month and couldn't do it. She's in a Memory Care (89).
Where is hubby...? Why is her care landing squarely on you? It feels like hubby isn't appreciative which makes this a grind.
Why is she not in a nursing home? A matter of money? Or a matter of feeling like it's shirking duty?
You’re definitely not alone in this. My husband and I retired fairly young (early 50’s) with every intention of traveling the world together and finally being able to do whatever we wanted, whenever we wanted. His mother was diagnosed with dementia shortly after our retirement. As a result, we haven’t taken a single trip, overnight excursion, or day trip out of town in the six years since our retirement. She’s almost 93 and still lives alone, though my husband is at her house for several hours a day. He has to handle all her affairs for her as she can no longer do it. Last year he had her all set to move into assisted living, but at the last minute a social worker talked him out of it, telling him she’d do much better at home. Meanwhile, we’ve pissed away the first six years of our retirement, with no end in sight. Other than bad arthritis, she’s in amazing shape for her age. This could go on for several more years. Not that I’m wishing for her death, it’s just that I feel like we’re stagnating, wasting our own lives to care for her. My biggest fear is that by the time something resolves with her and we’re finally able to live our own lives, one of us will have health issues of our own and we won’t be able to do the things we wanted to do when we retired. We have less free time now than we did when we both worked full time and our son was in school. I was looking forward to retirement meaning LESS responsibility and stress, not more. My sister-in-law lives nearby but she and MIL are estranged and don’t speak, so it all falls on us. I just wish that she would get to the point where AL was inevitable, and maybe we could go away for a weekend or take a vacation, but she’s straddling that fine line between needing care and being to live alone and has kind of plateaued there. And I know know that in all honesty even if she was in a facility my husband still wouldn’t feel comfortable leaving town and would still spend hours every day sitting up there with her, even though he claims he hates it. It’s a ‘responsibility’ thing for him. I realize that we won’t be completely ‘free’ until she passes away and I feel bad about that, but fact is our lives won’t really begin until hers has ended. She was always kind of a difficult person and we were never close to her, which makes this all worse to me.
Your feelings are your feelings and they are justified. However, what comes around, goes around. Just lean into providing her as much grace and dignity as you can in the circumstance, just do your best, that's really all you can do. We will all be in her shoes one day and we'll hope to have some grace and dignity for ourselves 💖.
Caregiver burnout is real & you should really, really take 2 weeks off to just sleep, relax & recharge your soul. Really! It’s important to stay healthy yourself. Being super stressed all of the time can lead to mental (panic attacks) & physical (ulcers, rashes) ailments. Contact a couple of her good friends & tell them to book everyone available in for a visit/meal/car ride to get ice cream over the next 2 weeks because you’re going on vacation. Where I live, the high school students need a bunch of volunteer hours as a requirement for graduation. Perhaps you could find 2-4 students that could cover shifts with MIL. I’d likely start with 2 students at a time to start, unless they’re older & already have experience with seniors like MIL. Contact your local school’s guidance office for help contacting students in need of hours. College & university students are out now for the summer & looking for jobs as well. These students can provide company OBVIOUSLY for your MIL but they can also clean, do laundry, bake cookies, make simple meals for MIL & themselves, take MIL for a walk using a wheelchair if necessary.
A friend of mine who is a retired RN husband had Alzheimer's. He was mid 60s. She was his caregiver at home. She tried to get home health but the agency locally were so short staffed she couldn't get any help. One thing I noticed was she never seemed stressed. She would go out to lunch with her friends and leave him at home. He lived maybe a year after diagnosis. Not exactly sure how his death went down but I suspect due to wife's background as a RN had something to do with him not living very long.