Carol Bradley Bursack, CDSGF
Author, speaker, columnist and eldercare consultant
Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.
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Question
How does a caregiver cope when an aging parent, with end stage cancer, who verbally attacks over something irr...
vstefans, you hit the nail on the head. The caregiver often gets the brunt of the anger and it's so hard to cope with, but the cause of... vstefans, you hit the nail on the head. The caregiver often gets the brunt of the anger and it's so hard to cope with, but the cause of the anger is generally the fact that the person feels helpless against all of the personal losses that have occurred.
Sadly, nothing makes this easy to cope with for the caregiver as Chimonger says, but for our own sake we must try. This behavior is not personal. In fact, in an odd way, it's a compliment, because the ill person feels safe taking out the rage on us.
Still, we do have to try to stand up for ourselves, especially when dementia isn't behind the behavior. Sometimes caregivers have to say that they won't be treated like that and just leave the room for awhile. Certainly, that isn't always possible and it doesn't always change things. However, if we don't fight but we try to get the message across that we won't put up with so much disrespect - sometimes - that helps.
Carol see more
Sadly, nothing makes this easy to cope with for the caregiver as Chimonger says, but for our own sake we must try. This behavior is not personal. In fact, in an odd way, it's a compliment, because the ill person feels safe taking out the rage on us.
Still, we do have to try to stand up for ourselves, especially when dementia isn't behind the behavior. Sometimes caregivers have to say that they won't be treated like that and just leave the room for awhile. Certainly, that isn't always possible and it doesn't always change things. However, if we don't fight but we try to get the message across that we won't put up with so much disrespect - sometimes - that helps.
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Question
Would a feeding tube have helped my Dad?
Thanks, Everishlass, for telling us about Cheyne-Stokes. I've heard of it but had forgotten. This is good information and comforting to... Thanks, Everishlass, for telling us about Cheyne-Stokes. I've heard of it but had forgotten. This is good information and comforting to many.
Carol see more
Carol see more
Question
Would a feeding tube have helped my Dad?
Hi Notenoughtime, I'm so sorry about what you're going through. Please let go of the guilt. Most of us feel that we could/should... Hi Notenoughtime,
I'm so sorry about what you're going through. Please let go of the guilt. Most of us feel that we could/should have done something different no matter what we do.
I want to state emphatically that I'm not a medical person so I can only give you my caregiver's opinion based on what I've read and my personal experience.
Pneumonia used to be called the old person's friend as it was an easier death than what may come after that. Of course, now they can medicate for pneumonia much better but that doesn't always have great results for the very old.
My mother-in-law had pneumonia and normal procedures were tried. None of that worked so they asked permission to give five shots of something very strong. That brought her out of the pneumonia, but her last two years of life after that were miserable. It's now my belief that the pneumonia was meant to take her. Still, we can only do our best and that's what we thought we were doing.
Your dad was 91 and likely the doctors didn't feel he could benefit from the tube feeding. There are times when that does help people, but often at his age and after what he'd been through, there is significant risk without a lot of hope that it will do more than keep his body alive longer. That's not the same as recovering. Yes, there are exceptions, but considering his age, I'd say that would be rare.
They found that your dad had esophageal cancer which is a very painful way to die. I suspect the doctors truly felt that palliative care now would save him much misery since he would die from the cancer anyway.
I'm somewhat surprised that palliative care didn't keep him more comfortable, however. I've only had experience with hospice and then only when my parents were more than ready to die. I think the doctor was required to tell you that they were no longer going to be trying to make him better, but he only did that after what they were trying in the hospital wasn't helping him.
In the end, a feeding tube may have kept him alive longer. His quality of life may or may not have made that a good thing. I hope that you can get some grief counseling and learn to not blame yourself. I think you did everything that you could.
Please check back with us and let us know how you're doing over time.
Carol see more
I'm so sorry about what you're going through. Please let go of the guilt. Most of us feel that we could/should have done something different no matter what we do.
I want to state emphatically that I'm not a medical person so I can only give you my caregiver's opinion based on what I've read and my personal experience.
Pneumonia used to be called the old person's friend as it was an easier death than what may come after that. Of course, now they can medicate for pneumonia much better but that doesn't always have great results for the very old.
My mother-in-law had pneumonia and normal procedures were tried. None of that worked so they asked permission to give five shots of something very strong. That brought her out of the pneumonia, but her last two years of life after that were miserable. It's now my belief that the pneumonia was meant to take her. Still, we can only do our best and that's what we thought we were doing.
Your dad was 91 and likely the doctors didn't feel he could benefit from the tube feeding. There are times when that does help people, but often at his age and after what he'd been through, there is significant risk without a lot of hope that it will do more than keep his body alive longer. That's not the same as recovering. Yes, there are exceptions, but considering his age, I'd say that would be rare.
They found that your dad had esophageal cancer which is a very painful way to die. I suspect the doctors truly felt that palliative care now would save him much misery since he would die from the cancer anyway.
I'm somewhat surprised that palliative care didn't keep him more comfortable, however. I've only had experience with hospice and then only when my parents were more than ready to die. I think the doctor was required to tell you that they were no longer going to be trying to make him better, but he only did that after what they were trying in the hospital wasn't helping him.
In the end, a feeding tube may have kept him alive longer. His quality of life may or may not have made that a good thing. I hope that you can get some grief counseling and learn to not blame yourself. I think you did everything that you could.
Please check back with us and let us know how you're doing over time.
Carol see more
Question
How does a caregiver cope when an aging parent, with end stage cancer, who verbally attacks over something irr...
I'm so sorry, TinyTrouble. This is horribly hard for you. It sounds as if either the cancer has spread to your parent's brain or... I'm so sorry, TinyTrouble. This is horribly hard for you. It sounds as if either the cancer has spread to your parent's brain or dementia of another type has taken over. This behavior is very common in several types of dementia. Reason rarely works under these circumstances, because people with dementia have their own reality.
Is your parent under hospice care? If a lot of pain is present, nearly anyone will become difficult. Hospice can help with that. Also, some medications can cause this behavior. My mother was give a liquid bone cancer medication (this was before hospice) and it completely changed her personality. However, it helped a lot with the pain. She was in a nursing home, so the nurse and I discussed this, I told them I was sorry about her behavior, and we all just coped by knowing that this was the disease/medication and tried to not let her behavior bother us. It wasn't long after that that hospice took over her care and they found a better way to keep her comfortable.
Sometimes, the best we can do is remind ourselves that the behavior isn't about them or us, it's simply the disease (or medication). That doesn't mean that this behavior doesn't hurt us - it just means that we can, in general, cope better if we don't take it personally.
Take care of yourself. This is really an ordeal. Please keep checking back for more from the community.
Carol see more
Is your parent under hospice care? If a lot of pain is present, nearly anyone will become difficult. Hospice can help with that. Also, some medications can cause this behavior. My mother was give a liquid bone cancer medication (this was before hospice) and it completely changed her personality. However, it helped a lot with the pain. She was in a nursing home, so the nurse and I discussed this, I told them I was sorry about her behavior, and we all just coped by knowing that this was the disease/medication and tried to not let her behavior bother us. It wasn't long after that that hospice took over her care and they found a better way to keep her comfortable.
Sometimes, the best we can do is remind ourselves that the behavior isn't about them or us, it's simply the disease (or medication). That doesn't mean that this behavior doesn't hurt us - it just means that we can, in general, cope better if we don't take it personally.
Take care of yourself. This is really an ordeal. Please keep checking back for more from the community.
Carol see more
Question
Should I feel guilty going out with my Dad and my family for my birthday when my Mom can't go?
I agree that you will likely feel sad, but there's no need for guilt. If you bring back something special for your mom, that may help... I agree that you will likely feel sad, but there's no need for guilt. If you bring back something special for your mom, that may help both of you.
Take care,
Carol see more
Take care,
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Question
Mom refused to stay at nursing home after begging to go. How much do we owe our parents?
Nearly every person who moved into a nursing home has these times. It takes time to adjust. My mother made the decision that was necessary... Nearly every person who moved into a nursing home has these times. It takes time to adjust. My mother made the decision that was necessary and I flew to make arrangements much like you did. Even though my dad (her husband) lived in the same facility and she knew it well. She knew the staff and that is was an excellent place. But it's a change and change is hard. It took her time to adjust.
I did visit every day, but I didn't have the background you have. I believe you have to simply refuse to have any more to do with this. If your siblings want to take care of her, then they can (you know they won't).
Your mother likely needs mental health care along with everything else. You have an obligation to yourself and your daughter. Your mother may not want to stay at the nursing home, but she is there. In your case, this should end the issue.
It's too bad that your credit card is on file. You may have to cancel the card if you can't get your mother's credit on there instead. If she has to apply for Medicaid, then that's fine. Provide the documentation for the process.
I see no way that you can go back to taking care of her. Please take care of yourself.
Carol see more
I did visit every day, but I didn't have the background you have. I believe you have to simply refuse to have any more to do with this. If your siblings want to take care of her, then they can (you know they won't).
Your mother likely needs mental health care along with everything else. You have an obligation to yourself and your daughter. Your mother may not want to stay at the nursing home, but she is there. In your case, this should end the issue.
It's too bad that your credit card is on file. You may have to cancel the card if you can't get your mother's credit on there instead. If she has to apply for Medicaid, then that's fine. Provide the documentation for the process.
I see no way that you can go back to taking care of her. Please take care of yourself.
Carol see more
Question
Mom wants me to buy her house. She thinks that by doing this, she won't need a will. Any suggestions?
I strongly agree that ratings don't tell the full story. Thank you for reinforcing that. Facilities change management and even... I strongly agree that ratings don't tell the full story. Thank you for reinforcing that. Facilities change management and even ownership and it can take time for records to catch up. Staff changes - and to me staffing is the most important. It's the people who count. Also - national ratings can be misleading. A health inspection in one state that ending with 3 rating could receive a 5 in another state. Standards vary greatly. Certainly - check ratings. However, listen to those who know as ba8alou did. Also, check it out personally and see how the staff interact. You can tell quite a bit by observation (not the same thing as listening to a "tour guide."
Great information ba8alou!
Carol see more
Great information ba8alou!
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Question
Mom wants me to buy her house. She thinks that by doing this, she won't need a will. Any suggestions?
ba8alou - thanks for the backup here. Your mother is the perfect example of someone who is financially well enough off that no one would... ba8alou - thanks for the backup here. Your mother is the perfect example of someone who is financially well enough off that no one would think Medicaid could possibly be an issue. However, as your story points out so well, we never know the future.
I'm so happy for you and your family that your mother is in such a wonderful care facility. My hope for everyone (until there is a different care solution) is that every care facility in the country is this good. Many elders feel very safe and comfortable under such care.
Warmly,
Carol see more
I'm so happy for you and your family that your mother is in such a wonderful care facility. My hope for everyone (until there is a different care solution) is that every care facility in the country is this good. Many elders feel very safe and comfortable under such care.
Warmly,
Carol see more
Question
Mom wants me to buy her house. She thinks that by doing this, she won't need a will. Any suggestions?
I'm so happy that your siblings are supportive of this. What a breath of fresh air! I would talk this over with an estate attorney.... I'm so happy that your siblings are supportive of this. What a breath of fresh air!
I would talk this over with an estate attorney. Even though your mother doesn't want to go to a nursing home, sometimes there is no choice. If a transfer is made you should do it now, but even then, if your mother's assets are spent down the house may still be liable. There are positives and negatives about the transfer, but if you pay off the mortgage and she goes on Medicaid there could be confusion over whose money the house represents. Legal advice is necessary in my mind so that you know you are protected.
This is a wonderful situation from the sound of it. You may also, after checking with an estate or elder law attorney about the house (because of potential Medicaid issues), want to talk with a fee only financial planner to see what strategy is the best for the use of your money.
Take care,
Carol see more
I would talk this over with an estate attorney. Even though your mother doesn't want to go to a nursing home, sometimes there is no choice. If a transfer is made you should do it now, but even then, if your mother's assets are spent down the house may still be liable. There are positives and negatives about the transfer, but if you pay off the mortgage and she goes on Medicaid there could be confusion over whose money the house represents. Legal advice is necessary in my mind so that you know you are protected.
This is a wonderful situation from the sound of it. You may also, after checking with an estate or elder law attorney about the house (because of potential Medicaid issues), want to talk with a fee only financial planner to see what strategy is the best for the use of your money.
Take care,
Carol see more
Question
Dementia, agitation, bipolar, anxiety, paranoia and POA. Advice?
It's very unfortunate that the POA was changed to your mother-in-law's sister, but if that was done and witnessed by a Notary... It's very unfortunate that the POA was changed to your mother-in-law's sister, but if that was done and witnessed by a Notary Public, it's likely legal. You may, however, be able to override it with the help of an elder law attorney since this was done later in your mother-in-law's decline.
Any POA dies with the person, so her sister will have no rights if you retain the place of trustee over her estate.
I'm telling you what I understand but I'm not an expert in this area, and state laws vary, as well, so you may want to talk with an attorney. I hope that you can regain the POA for your mother-in-law's sake. Good luck,
Carol see more
Any POA dies with the person, so her sister will have no rights if you retain the place of trustee over her estate.
I'm telling you what I understand but I'm not an expert in this area, and state laws vary, as well, so you may want to talk with an attorney. I hope that you can regain the POA for your mother-in-law's sake. Good luck,
Carol see more
Question
If POA is an attorney, does he/she then bill at the same rate as they would bill for their time where legal ex...
That depends on the attorney, but generally they bill for their time no matter what they are doing. Good luck - it can get expensive.... That depends on the attorney, but generally they bill for their time no matter what they are doing.
Good luck - it can get expensive.
Carol see more
Good luck - it can get expensive.
Carol see more
Question
Mom can't walk, talks little garbled. How does she still knows me?
Many people with dementia have what I call moments of clarity. It sounds that this is what's happening to your mom. Also, often, before... Many people with dementia have what I call moments of clarity. It sounds that this is what's happening to your mom.
Also, often, before people die, they become very lucid. My dad did this. My and I were convinced he'd last at least a few more days, so she left to go to her home fifty miles away. By the time she was on the highway going home, Dad had died in my arms.
The fact that your mom has hospice care means that she's probably not suffering from pain which can help lucidity. She may remain lucid for awhile. Enjoy what you can. This is a gift.
Warm wishes,
Carol see more
Also, often, before people die, they become very lucid. My dad did this. My and I were convinced he'd last at least a few more days, so she left to go to her home fifty miles away. By the time she was on the highway going home, Dad had died in my arms.
The fact that your mom has hospice care means that she's probably not suffering from pain which can help lucidity. She may remain lucid for awhile. Enjoy what you can. This is a gift.
Warm wishes,
Carol see more
Question
I can't seem to help myself. I feel alone and lost. What should I do?
HI Waman, I'm sorry that your friend is moving so far away. That seems to be the last straw for you since you could confide in her. ... HI Waman,
I'm sorry that your friend is moving so far away. That seems to be the last straw for you since you could confide in her.
Many communities have a senior commission though it may have a different name. They provide ways for seniors to make friends and have outings. Often you can get some good advice there, as well. As mentioned, your Agency on Aging may be able to help.
I know you told your husband you would never put him in a nursing home, but the time may come when you must. If that happens, don't feel guilty. You have already honored the spirit of your promise by providing care this long.
For house problems, Angie's list does sound like a good idea. I haven't used it but I've heard good things about it.
For legal advice, you can see if your State's Attorney's office has some pro bono help (free).
For company, other than church and your senior commission, the Well Spouse Organization helps many with online friendship. The WSA can be found at wellspouse.org.
I hope that you will keep checking back at Agingcare for friendship and tips, as well. Let us know how you are doing.
Carol see more
I'm sorry that your friend is moving so far away. That seems to be the last straw for you since you could confide in her.
Many communities have a senior commission though it may have a different name. They provide ways for seniors to make friends and have outings. Often you can get some good advice there, as well. As mentioned, your Agency on Aging may be able to help.
I know you told your husband you would never put him in a nursing home, but the time may come when you must. If that happens, don't feel guilty. You have already honored the spirit of your promise by providing care this long.
For house problems, Angie's list does sound like a good idea. I haven't used it but I've heard good things about it.
For legal advice, you can see if your State's Attorney's office has some pro bono help (free).
For company, other than church and your senior commission, the Well Spouse Organization helps many with online friendship. The WSA can be found at wellspouse.org.
I hope that you will keep checking back at Agingcare for friendship and tips, as well. Let us know how you are doing.
Carol see more
Question
Should I contact my dying Mom even though our relationship is broken again?
I agree with all of these helpful people. If at all possible you should go and see your mum. That's what this is about. If you... I agree with all of these helpful people. If at all possible you should go and see your mum. That's what this is about.
If you don't go, you may wish you had after it's too late. Expect frustrations and expect that your mum will be confused.
I've seen circumstances where a person manipulated the dying elder and it's one of the most vile things people can do. However, there are things that are out of our control.
Being so far away has got to be very, very hard. Try to see your mum and have some time alone with her just to hold her hand and let her know that you love her.
I'm glad you wrote and we hope that you'll check in again and let us know how you're doing.
Carol see more
If you don't go, you may wish you had after it's too late. Expect frustrations and expect that your mum will be confused.
I've seen circumstances where a person manipulated the dying elder and it's one of the most vile things people can do. However, there are things that are out of our control.
Being so far away has got to be very, very hard. Try to see your mum and have some time alone with her just to hold her hand and let her know that you love her.
I'm glad you wrote and we hope that you'll check in again and let us know how you're doing.
Carol see more
Question
If POA covers finance what covers vehicles and apartments that are owned etc.?
The person with the Power Of Attorney can sign for property and other things unless the POA is limited in some way. Most financial POAs... The person with the Power Of Attorney can sign for property and other things unless the POA is limited in some way. Most financial POAs assign the right to transact all business to the person named. You mom is the one who should handle this.
Good luck,
Carol see more
Good luck,
Carol see more
Question
Mom was released back to my brother, I am her medical advocate and POA. What can I do?
Wonderful, YoungRoxanne! We are so pleased. This is the very best solution that you could hope for.
Take care of yourself,
Carol
Take care of yourself,
Carol
Question
Do you give your loved ones vitamins? Which is best to give or are there specific ones?
SuziQ, I'd look for capsules that can be dumped into food - or liquids. An Internet search will bring up options. Pills can become a... SuziQ, I'd look for capsules that can be dumped into food - or liquids. An Internet search will bring up options. Pills can become a real problem for the very reason you mentioned. Risky for many elders.
As most of us have said, ideally everything would come from food, but many elders can't even come close to an ideal diet. If supplements are necessary, then finding ways to incorporate them with food helps.
Take care all of you great people!
Carol see more
As most of us have said, ideally everything would come from food, but many elders can't even come close to an ideal diet. If supplements are necessary, then finding ways to incorporate them with food helps.
Take care all of you great people!
Carol see more
Question
Do you give your loved ones vitamins? Which is best to give or are there specific ones?
Formulations of vitamins vary greatly when it comes to absorption. Some of the hard pills are made for shelf life and aren't broken... Formulations of vitamins vary greatly when it comes to absorption. Some of the hard pills are made for shelf life and aren't broken down enough in the body to do any good. Capsules are generally more effective for absorption, liquids often even better. Some high tech liquids have smaller molecules and are absorbed easily.
Since elderly people often don't have top functioning digestive systems, even those who eat well may not be getting the nutrition we think they are.
Some vitamins can't be taken with some medications which further complicates issues.
Much depends on the individual. The Mayo Clinic has a book on integrative medicine which is excellent. It will likely take years, but the integrating of Western medicine, Eastern medicine and nutritional supplementation that is determined for each person's needs will likely - eventually - become the norm.
Meanwhile we live in the here and now. B12, B6 and folic acid have been used in an Alzheimer's study showing great results (prevention and even some reversal), however many more studies will need to be done to confirm this.
My personal opinion is that the latest information that vitamins are just "expensive pee" will eventually be shown to be flawed because, by necessity, the study was too broad to cover individual needs and every form of supplementation. I do agree that common sense needs to be used. Immense amounts of supplements should be avoided unless used under the supervision of a qualified physician.
Meanwhile, fish oil, D3 and calcium (which generally should be balanced with magnesium) are frequently prescribed.
Again, as with most things, common sense is our best friend with most supplements, though a doctor you trust should be in on everything you take.
Carol see more
Since elderly people often don't have top functioning digestive systems, even those who eat well may not be getting the nutrition we think they are.
Some vitamins can't be taken with some medications which further complicates issues.
Much depends on the individual. The Mayo Clinic has a book on integrative medicine which is excellent. It will likely take years, but the integrating of Western medicine, Eastern medicine and nutritional supplementation that is determined for each person's needs will likely - eventually - become the norm.
Meanwhile we live in the here and now. B12, B6 and folic acid have been used in an Alzheimer's study showing great results (prevention and even some reversal), however many more studies will need to be done to confirm this.
My personal opinion is that the latest information that vitamins are just "expensive pee" will eventually be shown to be flawed because, by necessity, the study was too broad to cover individual needs and every form of supplementation. I do agree that common sense needs to be used. Immense amounts of supplements should be avoided unless used under the supervision of a qualified physician.
Meanwhile, fish oil, D3 and calcium (which generally should be balanced with magnesium) are frequently prescribed.
Again, as with most things, common sense is our best friend with most supplements, though a doctor you trust should be in on everything you take.
Carol see more
Question
What do you say to your very, very independent Mom who's dying?
Listen, hold her hand, agree that it's hard and if she has faith that the spirit lives without pain, let her know that you are certain... Listen, hold her hand, agree that it's hard and if she has faith that the spirit lives without pain, let her know that you are certain you'll always feel her with you.
Blessings to you both,
Carol see more
Blessings to you both,
Carol see more
My Mom recently passed away and my Dad doesn't remember and is constantly asking for her. Any advice?
I'm so sorry. This is one of the worst things to deal with. In a nutshell, I recommend that people tell the spouse one time about the death and if possible take him or her to the funeral (you did this already). After that, as is said above, make something up and go for distraction. You may want to read this article:
https://www.agingcare.com/articles/telling-someone-with-dementia-their-spouse-died-133806.htm
Take care,
Carol see more