"The one thing I never want is to be a burden on my family."
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If I polled my elderly population and asked them to choose between being dead or being dependent on their family, they would overwhelmingly chose death. There is a sense of shame and helplessness to ask those we love to give us a favor we can\’t ever repay. There is humiliation in transforming from a productive adult to a child-like being, needing help with the simple tasks of walking, bathing, and eating.
Much is done to fight dependency, with 401K accounts pushed by elderly actors on TV and long-term care insurance at the top of most financial planners\’ lists. If you end up dependent, you have failed. You have not planned enough and are now a burden. You drain the resources of those you love because of your own selfishness and lack of forethought. Not only are you shamed in your current vulnerable state, but you are shamed at the poor way you chose to live your life before it.
Why is this? Why is it so bad for children to have to take care of their parents? Why is it so bad to be a burden on your children? As a parent, I can say that my children are a huge burden on me; they take a lot of my time, my money, my emotional energy away from me. My life would be much freer if they did not exist. But I am more than willing to give up that freedom for the joy of this burden. I count my children among my greatest blessings despite the freedom they force me to forfeit. Why should it be any different with my parents?
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This is tough. On one hand I am glad that my parents have been wise in planning for their retirement and have continued in their independence. On the other hand, this independence has led to isolation from those who can be the greatest joy and help to us. Yes, it is difficult to care for others, but who better to carry your burden than your family? Is it really a shameful thing to be cared for by our children – those whom we so gladly forfeited our freedom.
So now I don\’t know how to respond to that statement. Is it really better to die than to be a burden? I sure as heck hope my parents don\’t think so.
Hmmmm.I chose to have children.
I didn’t choose to have my parents!
It is a damn sight easier changing a babies nappy!
And would I want my little girl when she’s all grown up, to have to look after a senile old me?….No
I want her to have as easier life as possible. Put me in an old folks home, give me some whiskey and let me pretend to be demented and flirt with the ladies….It sound just like student accomodation and I had a great time there!
Regards!
Max
Hmmmm.I chose to have children.
I didn’t choose to have my parents!
It is a damn sight easier changing a babies nappy!
And would I want my little girl when she’s all grown up, to have to look after a senile old me?….No
I want her to have as easier life as possible. Put me in an old folks home, give me some whiskey and let me pretend to be demented and flirt with the ladies….It sound just like student accomodation and I had a great time there!
Regards!
Max
I think it is our independent American society that is partly to blame. We are taught from our youth that we should be able to do a lot of things on our own. Our culture has really drifted away from mulitgenerational households.
I think it is our independent American society that is partly to blame. We are taught from our youth that we should be able to do a lot of things on our own. Our culture has really drifted away from mulitgenerational households.
Dang I thought you knew how I was with math! Hey, I’m with Max! My son informed me last night that I’ll just have to go to a nursing home because he just doesn’t think he could change my diaper 🙂 I told him that with any luck at all by that time he should be able to afford someone to come in to do that for him…Told him all his life he was stuck with me. so there 🙂 I could deal with whiskey, chasing orderlies in my wheelchair and a nursing home though…
Dang I thought you knew how I was with math! Hey, I’m with Max! My son informed me last night that I’ll just have to go to a nursing home because he just doesn’t think he could change my diaper 🙂 I told him that with any luck at all by that time he should be able to afford someone to come in to do that for him…Told him all his life he was stuck with me. so there 🙂 I could deal with whiskey, chasing orderlies in my wheelchair and a nursing home though…
All the planning in the world and even lots of money cannot deal with some things. I oversee the care of an elderly friend with Alzheimer’s Disease, now extremely advanced, and have done so for 8 years. No I don’t personally change his diapers but I provided people who did until the last 18 months when he ended up in an extended care home because he broke his hip. Although he is no relative and indeed he has no relatives, I am happy to do this for him for he was a good friend for more than forty years. Well actually I’m sad about the fact of it, especially as this man was a professor of Pharmacy and knew only too well what his fate would be.
None of us want to be a burden to our children or even society but as you know full well it isn’t always so simple. This man told me, no extraordinary means to keep him alive and I will honour his wishes but although the mind is long gone the body is not ready to give up, even though he cannot walk or even speak now and it is very difficult to swallow.
Dealing with situations like this are part of life for all of us, we really don’t get to choose death as an option.
All the planning in the world and even lots of money cannot deal with some things. I oversee the care of an elderly friend with Alzheimer’s Disease, now extremely advanced, and have done so for 8 years. No I don’t personally change his diapers but I provided people who did until the last 18 months when he ended up in an extended care home because he broke his hip. Although he is no relative and indeed he has no relatives, I am happy to do this for him for he was a good friend for more than forty years. Well actually I’m sad about the fact of it, especially as this man was a professor of Pharmacy and knew only too well what his fate would be.
None of us want to be a burden to our children or even society but as you know full well it isn’t always so simple. This man told me, no extraordinary means to keep him alive and I will honour his wishes but although the mind is long gone the body is not ready to give up, even though he cannot walk or even speak now and it is very difficult to swallow.
Dealing with situations like this are part of life for all of us, we really don’t get to choose death as an option.
It is a hard thing to be reliant on another, it is also tough to be a long term caregiver. No one wants to be a burden. No one wants to be responsible for putting a strain on someone they love. What a wonderful thing JMB is doing.
On a lighter note, Max E Nurse reminded me of a (for lack of a better word) gentleman, that I encountered in our local nursing home. He would tell the others he was blind, and he would corner some of the elderly women, while put his hands out to ….feel his way, so to speak. That cane wasn’t fooling anyone. He was enjoying retirement!
It is a hard thing to be reliant on another, it is also tough to be a long term caregiver. No one wants to be a burden. No one wants to be responsible for putting a strain on someone they love. What a wonderful thing JMB is doing.
On a lighter note, Max E Nurse reminded me of a (for lack of a better word) gentleman, that I encountered in our local nursing home. He would tell the others he was blind, and he would corner some of the elderly women, while put his hands out to ….feel his way, so to speak. That cane wasn’t fooling anyone. He was enjoying retirement!
I struggle with these things now and find it tough being in the sandwich generation although I don’t have it as tough as some people.
My mother is 84, lives alone and is not real steady on her feet. I can see where she needs help with many things but she keeps refusing. And she has a firecracker temper that causes me to back down because of her a-fib.
If parents can’t be independent then I do think family is the best solution if it is possible. From the Biblical perspective we are supposed to care for our parents. But then sometimes all kinds of dynamics get in the way of that.
I am wrestling right now with the fact that she insists on doing her own shopping, stands for hours in the store because she is so slow, insists on pushing the cart but I still try to take the heavy stuff away. I can see the time coming when I have to tell her she can’t do big shopping trips. I drive her everywhere, otherwise she is a shut in.
I need to ask her about funeral plans, advanced directives and i am afraid to do that. I wish I had siblings so there was support in numbers.
Working with lifeline, I was able to see senior citizens in all kinds of living arrangements. Some were just wonderful while others were severely lacking.
I am sorry Rob…i know i got off track here. I guess I would not want to be a burden but yet I would hope that I was of some value to my family and not easily discarded. Elderly people have a lifetime of experiences and wisdom to offer but it depends on the person. OK…I would NOT want my family to suffer with having to care for me but I would not want them to forget me.
I remember hearing pastor TD Jakes talking about his dying mother and how it was a privilege for him to go help her and wash her hair, etc.
Yes…WONDERFUL JMB!
I struggle with these things now and find it tough being in the sandwich generation although I don’t have it as tough as some people.
My mother is 84, lives alone and is not real steady on her feet. I can see where she needs help with many things but she keeps refusing. And she has a firecracker temper that causes me to back down because of her a-fib.
If parents can’t be independent then I do think family is the best solution if it is possible. From the Biblical perspective we are supposed to care for our parents. But then sometimes all kinds of dynamics get in the way of that.
I am wrestling right now with the fact that she insists on doing her own shopping, stands for hours in the store because she is so slow, insists on pushing the cart but I still try to take the heavy stuff away. I can see the time coming when I have to tell her she can’t do big shopping trips. I drive her everywhere, otherwise she is a shut in.
I need to ask her about funeral plans, advanced directives and i am afraid to do that. I wish I had siblings so there was support in numbers.
Working with lifeline, I was able to see senior citizens in all kinds of living arrangements. Some were just wonderful while others were severely lacking.
I am sorry Rob…i know i got off track here. I guess I would not want to be a burden but yet I would hope that I was of some value to my family and not easily discarded. Elderly people have a lifetime of experiences and wisdom to offer but it depends on the person. OK…I would NOT want my family to suffer with having to care for me but I would not want them to forget me.
I remember hearing pastor TD Jakes talking about his dying mother and how it was a privilege for him to go help her and wash her hair, etc.
Yes…WONDERFUL JMB!
I wonder when it was that the individual took priority over the family. Why is it that the conveniences of our own lives are more important than that of family members? I am as guilty of it as all are, and I think the stubborn independence of some elderly people is also not right. Again, I don’t know what the answer is, except that we need to be more willing to lean on each other and not value independence on either side of the equation so highly.
I wonder when it was that the individual took priority over the family. Why is it that the conveniences of our own lives are more important than that of family members? I am as guilty of it as all are, and I think the stubborn independence of some elderly people is also not right. Again, I don’t know what the answer is, except that we need to be more willing to lean on each other and not value independence on either side of the equation so highly.
Thank you for your added insight Rob.
I am conflicted about this. And loaded with guilt, frustration, fear, sadness and (anger with some things). I am not at all an angry person but there is a hx between us that keeps getting in the way for me emotionally that is exacerbated by certain things she does. AND simultaneously my heart breaks for her and what I perceive her life to have been/is.
The thing is…my life is so much better than what she has had. So…I should just rise above and do what I know needs to be done. Period. I have felt like I had to be her parent since i was 12. It just hasn’t been the typical mother/daughter relationship. I know the things in the past are not my fault…but she is my mother and I somehow feel like i have always let her down and maybe I have at times. And I am now. I want to run in and rescue her and I want to run away.
I wonder…do other people experience these emotions to varying degrees with their aging loved ones?
It rips my heart out now that she is hunching over, walking so slowly and not always steady. It hurts. And it frightens me. It is life. We all get old. our parents had to face losing their parents and they theirs and so on.
The people that have aging parents who have good lives and can be independent are so blessed.
Does anyone know of a good book they would recommend on the topic.
Thank you for your added insight Rob.
I am conflicted about this. And loaded with guilt, frustration, fear, sadness and (anger with some things). I am not at all an angry person but there is a hx between us that keeps getting in the way for me emotionally that is exacerbated by certain things she does. AND simultaneously my heart breaks for her and what I perceive her life to have been/is.
The thing is…my life is so much better than what she has had. So…I should just rise above and do what I know needs to be done. Period. I have felt like I had to be her parent since i was 12. It just hasn’t been the typical mother/daughter relationship. I know the things in the past are not my fault…but she is my mother and I somehow feel like i have always let her down and maybe I have at times. And I am now. I want to run in and rescue her and I want to run away.
I wonder…do other people experience these emotions to varying degrees with their aging loved ones?
It rips my heart out now that she is hunching over, walking so slowly and not always steady. It hurts. And it frightens me. It is life. We all get old. our parents had to face losing their parents and they theirs and so on.
The people that have aging parents who have good lives and can be independent are so blessed.
Does anyone know of a good book they would recommend on the topic.
I have no problems with this subject.
I want to stay alive as long as I feel good about life. When that feeling is gone, just pull the plug.
I could have died many times before I was even a teen, so I’m kind of living on borrowed time and I love every minute of it. I want no one to feel sorry for me, but as long as I enjoy life, I have no problem with someone taking care of me.
I cannot remember any time when “tomorrow” didn’t look brighter than today. And although I’m not religious, the end doesn’t worry me. When it come, it comes.
I have no problems with this subject.
I want to stay alive as long as I feel good about life. When that feeling is gone, just pull the plug.
I could have died many times before I was even a teen, so I’m kind of living on borrowed time and I love every minute of it. I want no one to feel sorry for me, but as long as I enjoy life, I have no problem with someone taking care of me.
I cannot remember any time when “tomorrow” didn’t look brighter than today. And although I’m not religious, the end doesn’t worry me. When it come, it comes.
I am facing this very dilemma at the present time. It is even more complex than Rob says. My own mother, age 92, has been in a nursing home for two years, but before then I cared for her in my own home for 3 years, as her dementia was advancing. I built a handicap-accessible suite onto my home, thinking I’d never let her go to a nursing home. And I hired home health aides. But as time went on, though I thought I could “keep” her, I couldn’t keep her safe. She took more and more falls. She was up in the night, wandering and falling.
The baby monitor was always next to my ear and I was hypervigilant, always listening, even when asleep, to rush in (I prided myself that my response time was 10 seconds or less) as soon as I heard her stirring. In order to walk her to the bathroom, to avoid a fall.
Two things happened that caused me to back down. One day, at 3 p.m., she was going down in the bathroom. I broke her fall with my own body, but then found myself pinned under her. It was time to pick up one of the kids at school and go to the door to get my son with disabilities off his school but, and I could do neither. Nor could I get to my cell phone to call the school or answer the phone when the bus driver called from my driveway.
The other thing that happened was I had gone 10 days without a 5-hour block of sleep, due to getting up in the night with my mother. The exhaustion and the feeling of going over the edge, emotionally, finally supplanted my feelings of guilt, and I arranged for her to go to the nursing home.
Her dementia is quite advanced. She says a few words, but never a full sentence. She may even begin a sentence, but then her thought is lost and she trails off after a word or two.
With dementia, one’s good judgment (as in keeping oneself safe) disappears. She did/does things that are dangerous. I child-proofed her suite in my home, as well as I could, but she still sprayed toilet bowl cleaner on her skin, insisted on eating food with mold, put spoons and forks into the microwave, melted things on her stovetop. Then, and now, she constantly puts herself at risk for falls. I even had an old-fashioned hospital bed with side rails on it . . . and she still fell.
She fell on March 13th in the nursing home. On the 16th, she landed in the ER with severe respiratory symptoms. The is her 2nd hospitalization in 8 months. IV fluids bring her around, so I think whatever else is going on with her, severe dehydration puts her over the top. No, she refuses to drink, and eats very little.
She doesn’t know our names any more, but she has the look of recognition when she sees me. Believe me, that is NOT the hardest part (for me).
The hardest part is that when she fell and I was called away from work, and on the way to her hospital, I knew I might have to make some decisions–the very one that Rob uses as a title of this post.
I am entirely ready to let her go. Her life is full of indignity. Diapers are emblematic of the whole list of things that are ignominious.
BUT, in her dementia, she has become quite ZEN. She has become very flexible, in ways opposite to what many elderly people experience. She is okay with the strange faces in the ER ministering to her. She is okay to stay in the hospital or to go back to her nursing home. She is okay if you wake her, or if you let her sleep; she is okay if you feed her or if you don’t. She doesn’t recognize any foods any more, not even their flavors. She doesn’t know what she is eating–if it is meat or vegetable, if it is an old favorite or something she would never have touched if she was in her right mind. If you visit, that is fine. But if you don’t visit, that is fine, too.
It is as if she doesn’t really care about any of the things that people ordinarily care about. She has let go. She is totally detached. Is that dementia? Depression? Does it signal that it is time for her to leave this earth?
Lesson learned? That I, myself, will call a halt before my judgment leaves me. I will not leave that hard decision to my children, my mate, nor anyone else. I may move to Oregon, where I may be able to arrange an assisted suicide . . . or by then, I will have some other solution.
You see, it is NOT only changing the diapers and breaking her falls, it is the final decision as you stand over your parent in the ER. You are aking yourself, Is it her time? Should I ask them to turn off the IV fluids? Should I let her sleep away?
Chris and Vic
I am facing this very dilemma at the present time. It is even more complex than Rob says. My own mother, age 92, has been in a nursing home for two years, but before then I cared for her in my own home for 3 years, as her dementia was advancing. I built a handicap-accessible suite onto my home, thinking I’d never let her go to a nursing home. And I hired home health aides. But as time went on, though I thought I could “keep” her, I couldn’t keep her safe. She took more and more falls. She was up in the night, wandering and falling.
The baby monitor was always next to my ear and I was hypervigilant, always listening, even when asleep, to rush in (I prided myself that my response time was 10 seconds or less) as soon as I heard her stirring. In order to walk her to the bathroom, to avoid a fall.
Two things happened that caused me to back down. One day, at 3 p.m., she was going down in the bathroom. I broke her fall with my own body, but then found myself pinned under her. It was time to pick up one of the kids at school and go to the door to get my son with disabilities off his school but, and I could do neither. Nor could I get to my cell phone to call the school or answer the phone when the bus driver called from my driveway.
The other thing that happened was I had gone 10 days without a 5-hour block of sleep, due to getting up in the night with my mother. The exhaustion and the feeling of going over the edge, emotionally, finally supplanted my feelings of guilt, and I arranged for her to go to the nursing home.
Her dementia is quite advanced. She says a few words, but never a full sentence. She may even begin a sentence, but then her thought is lost and she trails off after a word or two.
With dementia, one’s good judgment (as in keeping oneself safe) disappears. She did/does things that are dangerous. I child-proofed her suite in my home, as well as I could, but she still sprayed toilet bowl cleaner on her skin, insisted on eating food with mold, put spoons and forks into the microwave, melted things on her stovetop. Then, and now, she constantly puts herself at risk for falls. I even had an old-fashioned hospital bed with side rails on it . . . and she still fell.
She fell on March 13th in the nursing home. On the 16th, she landed in the ER with severe respiratory symptoms. The is her 2nd hospitalization in 8 months. IV fluids bring her around, so I think whatever else is going on with her, severe dehydration puts her over the top. No, she refuses to drink, and eats very little.
She doesn’t know our names any more, but she has the look of recognition when she sees me. Believe me, that is NOT the hardest part (for me).
The hardest part is that when she fell and I was called away from work, and on the way to her hospital, I knew I might have to make some decisions–the very one that Rob uses as a title of this post.
I am entirely ready to let her go. Her life is full of indignity. Diapers are emblematic of the whole list of things that are ignominious.
BUT, in her dementia, she has become quite ZEN. She has become very flexible, in ways opposite to what many elderly people experience. She is okay with the strange faces in the ER ministering to her. She is okay to stay in the hospital or to go back to her nursing home. She is okay if you wake her, or if you let her sleep; she is okay if you feed her or if you don’t. She doesn’t recognize any foods any more, not even their flavors. She doesn’t know what she is eating–if it is meat or vegetable, if it is an old favorite or something she would never have touched if she was in her right mind. If you visit, that is fine. But if you don’t visit, that is fine, too.
It is as if she doesn’t really care about any of the things that people ordinarily care about. She has let go. She is totally detached. Is that dementia? Depression? Does it signal that it is time for her to leave this earth?
Lesson learned? That I, myself, will call a halt before my judgment leaves me. I will not leave that hard decision to my children, my mate, nor anyone else. I may move to Oregon, where I may be able to arrange an assisted suicide . . . or by then, I will have some other solution.
You see, it is NOT only changing the diapers and breaking her falls, it is the final decision as you stand over your parent in the ER. You are aking yourself, Is it her time? Should I ask them to turn off the IV fluids? Should I let her sleep away?
Chris and Vic
Chris and Vic:My 2-Cents’ worth are that there does come a time where it is too much for a family to do for their parent. I do think it is OK if it is overwhelming for the family. If you think it would be better for your Mom to be there, then it is a good thing. If they offer care that you can’t offer, then that is a good choice. The good side of dementia is that people are happy with any situation.
One thing people do not think of is hospice. It may be possible to get hospice for her if she is at this age. They offer a whole lot more support than most people realize.
Still, there should not be much guilt in this.
Chris and Vic:My 2-Cents’ worth are that there does come a time where it is too much for a family to do for their parent. I do think it is OK if it is overwhelming for the family. If you think it would be better for your Mom to be there, then it is a good thing. If they offer care that you can’t offer, then that is a good choice. The good side of dementia is that people are happy with any situation.
One thing people do not think of is hospice. It may be possible to get hospice for her if she is at this age. They offer a whole lot more support than most people realize.
Still, there should not be much guilt in this.
Having cared for a dying parent (CA) and lost the other parent suddenly (hemoperitoneum 2ndary to MVA) I will only say that the grief is the same as is the endpoint. Only the process differs. Being the ‘medical’ person in the family makes all family eyes turn to us not just as interpreter of facts, but default decision-maker. This makes it worse for us because if you’re like me, you lose objectivity when it comes to your loved ones. Folks would say to me as I supervised and often did hands on care during my dad’s long fight with death, “….how wonderful that you’re on the inside of health care and are able to ………..(arrange home care, facilitate drug administration, ensure prompt reimbursement, you name it – fill in the blank)….and I wanted to scream! “YOU don’t understand….in my heart and soul it’s the same as if I worked at QWIK-CHEK!!! Now many years later I am SO glad I was able to do all that I did for my dad. But the bottom lines is that HE made it possible for me to do it. His personality and the way he lived his life had more to do with how he died and how I was able to help him than any other single facet of his end of life care. With my mother’s sudden death, the immediate shock of ‘where’s mommy?’ took a VERY long time to melt away. I was talking to her, and then a few hours later she was gone. Dead? Yes. Each manner of death was terrible simply because there is NO good way to loose your parents. And you are never so old that you are ready to lose them. The death of your parents makes you a member of a club you are loathe to join. The complex issue of how we morphed from the ‘multigenerational’ family is a treatise for socio/cultural anthropologists to expound upon. ‘Aging in Place’ and the ‘Continuity Theory of Aging’ are syllabi in Depts of Gerontology nationwide and well worth examining. But the deal breaker for me? Incontinence! When I can no longer maintain dominion over my excretory functions – That’s It!! Sayonara. Unlike Benyamin Button – you and I won’t have the good fortune become of a sweet smelling, soft skinned babe as we check out. I DON’T want my wonderful children or husband to endure the ammonia reeking, chux-loaded warehouse for the elderly to be their final memories of mom. Just MHO and noted in my Living Will/Advanced directive. My kids will NOT have to endure their mother’s last days as a talking head or effluent oozing shadow of her former self. We discuss it all the time and they’re well aware that lots of amitryptiline is most effective when needed. Years and years away though, if God spares.
Good points. I tend to agree about the incontinence issue, although the “inflicting” is often over-estimated by the person needing the help. The point of the post is to say that cleaning others’ crap is what families do! We clean our kids crap when they are young, and I would do the same for them if they were injured. Willingness to do this kind of thing is, in my opinion, a lot of what family is all about.
Having cared for a dying parent (CA) and lost the other parent suddenly (hemoperitoneum 2ndary to MVA) I will only say that the grief is the same as is the endpoint. Only the process differs. Being the ‘medical’ person in the family makes all family eyes turn to us not just as interpreter of facts, but default decision-maker. This makes it worse for us because if you’re like me, you lose objectivity when it comes to your loved ones. Folks would say to me as I supervised and often did hands on care during my dad’s long fight with death, “….how wonderful that you’re on the inside of health care and are able to ………..(arrange home care, facilitate drug administration, ensure prompt reimbursement, you name it – fill in the blank)….and I wanted to scream! “YOU don’t understand….in my heart and soul it’s the same as if I worked at QWIK-CHEK!!! Now many years later I am SO glad I was able to do all that I did for my dad. But the bottom lines is that HE made it possible for me to do it. His personality and the way he lived his life had more to do with how he died and how I was able to help him than any other single facet of his end of life care. With my mother’s sudden death, the immediate shock of ‘where’s mommy?’ took a VERY long time to melt away. I was talking to her, and then a few hours later she was gone. Dead? Yes. Each manner of death was terrible simply because there is NO good way to loose your parents. And you are never so old that you are ready to lose them. The death of your parents makes you a member of a club you are loathe to join. The complex issue of how we morphed from the ‘multigenerational’ family is a treatise for socio/cultural anthropologists to expound upon. ‘Aging in Place’ and the ‘Continuity Theory of Aging’ are syllabi in Depts of Gerontology nationwide and well worth examining. But the deal breaker for me? Incontinence! When I can no longer maintain dominion over my excretory functions – That’s It!! Sayonara. Unlike Benyamin Button – you and I won’t have the good fortune become of a sweet smelling, soft skinned babe as we check out. I DON’T want my wonderful children or husband to endure the ammonia reeking, chux-loaded warehouse for the elderly to be their final memories of mom. Just MHO and noted in my Living Will/Advanced directive. My kids will NOT have to endure their mother’s last days as a talking head or effluent oozing shadow of her former self. We discuss it all the time and they’re well aware that lots of amitryptiline is most effective when needed. Years and years away though, if God spares.
Good points. I tend to agree about the incontinence issue, although the “inflicting” is often over-estimated by the person needing the help. The point of the post is to say that cleaning others’ crap is what families do! We clean our kids crap when they are young, and I would do the same for them if they were injured. Willingness to do this kind of thing is, in my opinion, a lot of what family is all about.