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 do we convince my mother-in-law to go into a nursing home?
I agree that a third party could help you here. If your mother-in-law hears from a doctor that she needs nursing home care, then she may be... I agree that a third party could help you here. If your mother-in-law hears from a doctor that she needs nursing home care, then she may be more willing to make that move.
If, however, she has six months or less to live, then hospice is your answer. Once again, you'll need input from a doctor. Before taking her in, you could write the doctor a letter in advance to explain exactly what is happening at home. If he or she is fully informed you are likely to get more help.
Good luck with this. We're with you. Please let us know what you decide to do.
Carol see more
If, however, she has six months or less to live, then hospice is your answer. Once again, you'll need input from a doctor. Before taking her in, you could write the doctor a letter in advance to explain exactly what is happening at home. If he or she is fully informed you are likely to get more help.
Good luck with this. We're with you. Please let us know what you decide to do.
Carol see more
Question
Is surgery for someone with advanced dementia ever advisable?
My mother, who didn't have Alzheimer's but had some mild memory issues, had tremendous pain. She went for years before she... My mother, who didn't have Alzheimer's but had some mild memory issues, had tremendous pain. She went for years before she qualified for hospice, but she'd say to me from time to time, "Can't you just give me a little black pill?" She wasn't depressed except that she was so tired of pain and a poor quality of life even though everything possible was being done.
Eventually, advanced cancer qualified her for hospice and they were able to keep her pain free for her last weeks. Those were good weeks in many ways because she was physically comfortable. Since my dad had died by then, her emotional pain was likely part of her letting go. It was time.
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Eventually, advanced cancer qualified her for hospice and they were able to keep her pain free for her last weeks. Those were good weeks in many ways because she was physically comfortable. Since my dad had died by then, her emotional pain was likely part of her letting go. It was time.
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Question
My FIL (84) has lived with us for 10 years, since his wife passed away. He won't accept outside help. Advice?
I agree with those who say to offer a choice. Outside help coming in or moving to assisted living. You have given more than enough.... I agree with those who say to offer a choice. Outside help coming in or moving to assisted living. You have given more than enough. Don't sacrifice your marriage, too.
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Question
Is surgery for someone with advanced dementia ever advisable?
I'm so sorry. Sixty three isn't very old so that makes this doubly hard on you. Still, with all of the other health issues -... I'm so sorry. Sixty three isn't very old so that makes this doubly hard on you.
Still, with all of the other health issues - especially dementia - I'd echo the feeling of others that talks with the palliative care people at the hospital as well as hospice are in order.
I've seen what anesthesia can do in such circumstances and the results can be devastating so I may be biased, but I also have a good feeling about what I'd want if I were in your mother's shoes. I'd choose hospice.
Much goes to what your mother would have wanted if she'd been presented with this scenario when she was healthy. Would she have said, "Oh, I'd choose surgery anyway," or would she have said, "There's no way I'd want to live that way." You can't know for sure, of course, but you may have a feel for what she'd have thought.
The other consideration, of course, is how strong of a case the doctor can make for improvement vs. risk of the surgery.
Still, in the end, hospice would be my choice.
Please let us know what you decide and how you both are doing.
Carol see more
Still, with all of the other health issues - especially dementia - I'd echo the feeling of others that talks with the palliative care people at the hospital as well as hospice are in order.
I've seen what anesthesia can do in such circumstances and the results can be devastating so I may be biased, but I also have a good feeling about what I'd want if I were in your mother's shoes. I'd choose hospice.
Much goes to what your mother would have wanted if she'd been presented with this scenario when she was healthy. Would she have said, "Oh, I'd choose surgery anyway," or would she have said, "There's no way I'd want to live that way." You can't know for sure, of course, but you may have a feel for what she'd have thought.
The other consideration, of course, is how strong of a case the doctor can make for improvement vs. risk of the surgery.
Still, in the end, hospice would be my choice.
Please let us know what you decide and how you both are doing.
Carol see more
Question
Caregiver over stepping boundaries. Any advice?
Great advice here but I'd like to stick up for younger people. A university that uses my book in their gerontology class to help... Great advice here but I'd like to stick up for younger people. A university that uses my book in their gerontology class to help humanize the family caregiving experience invites me to talk with the class just before graduation each year.
All of these young people have done internships and most are CNAs who've worked their way through college by caring for elders. Ninety percent are passionate about the people they care for.
That being said, this particular woman doesn't fit that mold and should be talked to in a business like way, monitored and if she doesn't shape up, fired.
Older caregivers can be wonderful, but what I'm saying is that age isn't the issue - the person is. One older aide slept on the couch during the time she was supposed to be working and smoked in the house (and denied it). Others, of course, are real jewels who love elders.
Finding perfection only happens once in awhile. Finding someone who at least does the work with a smile and listens is great. Maybe this young woman could improve with guidance – maybe not.
Good luck with this situation. The brothers are a problem here for sure.
Carol see more
All of these young people have done internships and most are CNAs who've worked their way through college by caring for elders. Ninety percent are passionate about the people they care for.
That being said, this particular woman doesn't fit that mold and should be talked to in a business like way, monitored and if she doesn't shape up, fired.
Older caregivers can be wonderful, but what I'm saying is that age isn't the issue - the person is. One older aide slept on the couch during the time she was supposed to be working and smoked in the house (and denied it). Others, of course, are real jewels who love elders.
Finding perfection only happens once in awhile. Finding someone who at least does the work with a smile and listens is great. Maybe this young woman could improve with guidance – maybe not.
Good luck with this situation. The brothers are a problem here for sure.
Carol see more
Question
Do people with dementia develop a dislike of water in general or just showers?
A woman I knew who lived in a nursing home screamed in terror before her bath. They had a wonderful, warm, massaging walk-in bath but the... A woman I knew who lived in a nursing home screamed in terror before her bath. They had a wonderful, warm, massaging walk-in bath but the bubbles in the water made her think she was going to be boiled. Yes - boiled. Can you imagine the terror that poor woman felt.
Water in general seems to be a problem and fear plus lack of understanding seem to be at the bottom of the behavior. Anything a caregiver can do to calm, soothe, reassure and praise the person is helpful. Asking him or her to help you along by holding something like a washcloth can help. So can telling the person step by step what you are going to do and keeping private areas covered.
Sometimes hiring an outside caregiver from an agency just for a weekly bath can help. It's one area where a professional "stranger" may seem more reassuring than a family member (modesty).
Keep reading - many people have ideas for you here.
Carol see more
Water in general seems to be a problem and fear plus lack of understanding seem to be at the bottom of the behavior. Anything a caregiver can do to calm, soothe, reassure and praise the person is helpful. Asking him or her to help you along by holding something like a washcloth can help. So can telling the person step by step what you are going to do and keeping private areas covered.
Sometimes hiring an outside caregiver from an agency just for a weekly bath can help. It's one area where a professional "stranger" may seem more reassuring than a family member (modesty).
Keep reading - many people have ideas for you here.
Carol see more
Question
Grandpa has not showered/bathed in 2 years! What can I do?
There has been a lot of terrific input from the community. I'll only add that for my mother-in-law, hiring a person come in once a week... There has been a lot of terrific input from the community. I'll only add that for my mother-in-law, hiring a person come in once a week for a bath was well worth the money. She was exceptionally modest and did not want family members bathing her. She wasn't crazy about the aides, either, but she did as they asked without much of a problem. As mentioned above, sometimes "getting naked" in front of family members seems taboo where a "nurse" (any CNA, caregiver or helper outside the family who is a professional at what they do) is okay.
Good luck with this tough issue,
Carol see more
Good luck with this tough issue,
Carol see more
Question
I find myself losing my temper alot, (nothing physical or verbal) and that is not me, and I feel like I am fai...
Hi Hope14, You've already done far more than a lot of people could. It's definitely time for professional help for your mom. I know... Hi Hope14,
You've already done far more than a lot of people could. It's definitely time for professional help for your mom. I know that you love her very much. That is one reason to get help from the outside.
Caregivers burnout. That's where you are and for a very good reason. You are not a failure. Your mother's disease has reached a point where she may need to be in a nursing home. At the very least, you could call an in-home service in your community and see if they take Medicare for a weekly showering. I've been told that they do. Even so, you are struggling with much more than that.
Your mom would feel terrible if she could understand what this is doing to you. Unfortunately, her brain disease makes it impossible for her to "get" this. So, you have to think of her when she was well and remember that she'd have hated to have your give up your life and your health to take care of her.
Type the name of your state in your browser and type "aging" next to it - Oklahoma aging. This will give your the department of aging for your state. There are many links to choose from in order to get connected with local services. I see that your state is on the PACE (Program of All-Inclusive Care for the Elderly) which is wonderful. Try that link. They are likely able to send help to you.
The bottom line if that you need help both for your mom and yourself. A burned out caregiver is bound to have a sharp temper and say or do things that they aren't happy with. That is not failing - it's natural burnout.
If you are feeling suicidal, call 1-800-273-TALK or 1-800-SUICIDE (National Suicide Prevention Lifeline). Careline at 405-848-CARE is also good option.
Re-read Jeannegibb's excellent answer to you, as well. We are all behind you. Please get back to us and let us know how you are doing. We'd like to know if PACE or another agency in Oklahoma is helping you.
Taking action – such as coming to Agingcare – is one good step forward. Now take more action by getting help for your mom and yourself.
Blessings,
Carol see more
You've already done far more than a lot of people could. It's definitely time for professional help for your mom. I know that you love her very much. That is one reason to get help from the outside.
Caregivers burnout. That's where you are and for a very good reason. You are not a failure. Your mother's disease has reached a point where she may need to be in a nursing home. At the very least, you could call an in-home service in your community and see if they take Medicare for a weekly showering. I've been told that they do. Even so, you are struggling with much more than that.
Your mom would feel terrible if she could understand what this is doing to you. Unfortunately, her brain disease makes it impossible for her to "get" this. So, you have to think of her when she was well and remember that she'd have hated to have your give up your life and your health to take care of her.
Type the name of your state in your browser and type "aging" next to it - Oklahoma aging. This will give your the department of aging for your state. There are many links to choose from in order to get connected with local services. I see that your state is on the PACE (Program of All-Inclusive Care for the Elderly) which is wonderful. Try that link. They are likely able to send help to you.
The bottom line if that you need help both for your mom and yourself. A burned out caregiver is bound to have a sharp temper and say or do things that they aren't happy with. That is not failing - it's natural burnout.
If you are feeling suicidal, call 1-800-273-TALK or 1-800-SUICIDE (National Suicide Prevention Lifeline). Careline at 405-848-CARE is also good option.
Re-read Jeannegibb's excellent answer to you, as well. We are all behind you. Please get back to us and let us know how you are doing. We'd like to know if PACE or another agency in Oklahoma is helping you.
Taking action – such as coming to Agingcare – is one good step forward. Now take more action by getting help for your mom and yourself.
Blessings,
Carol see more
Question
How can differences between siblings be resolved without conflict concerning the care for our Mom?
Having a parent or spouse with Alzheimer's can cause a lot of emotions. When we see how vulnerable they are, it's easy to become... Having a parent or spouse with Alzheimer's can cause a lot of emotions. When we see how vulnerable they are, it's easy to become overly protective. Still, your sister should be sharing information with the rest of you.
Another thought: Your dad died three months ago, so your mom is probably in deep grief (even if people don't think she knows - she does). It could be that your mom is declining rapidly in part because of the loss of your dad and your sister is afraid that she will be blamed for this decline since she's currently in charge.
The only way, of course, if to find a way to communicate. Gently assure her that you know that your mom is in a downward spiral and no one can do anything to stop that. Let her know that you feel she's doing a great job. You just want to know how things are going like she does when you are taking care of your mom.
If that doesn't work, perhaps a friend of the family can talk with her. Sometimes someone outside the family can seem more unbiased and people will open up.
Good luck,
Carol see more
Another thought: Your dad died three months ago, so your mom is probably in deep grief (even if people don't think she knows - she does). It could be that your mom is declining rapidly in part because of the loss of your dad and your sister is afraid that she will be blamed for this decline since she's currently in charge.
The only way, of course, if to find a way to communicate. Gently assure her that you know that your mom is in a downward spiral and no one can do anything to stop that. Let her know that you feel she's doing a great job. You just want to know how things are going like she does when you are taking care of your mom.
If that doesn't work, perhaps a friend of the family can talk with her. Sometimes someone outside the family can seem more unbiased and people will open up.
Good luck,
Carol see more
Question
Does anyone just need to go somewhere and be alone?
Gladimhere, I had to smile when I read that you chose time alone over a group. That's me in a nutshell. I have to set priorities and... Gladimhere,
I had to smile when I read that you chose time alone over a group. That's me in a nutshell. I have to set priorities and have spent a lot of time at seminars (and presented at them), and attended support groups, etc. But if I don't have time alone, the rest may as well go because I'm no good to anyone.
I do hope you can find a regular time. As was suggested - one of the blessings of ADC is that you may have a chance for time for yourself. I know there are so many other things to do, but if there is a chance for that kind of break, take some time for yourself.
Carol see more
I had to smile when I read that you chose time alone over a group. That's me in a nutshell. I have to set priorities and have spent a lot of time at seminars (and presented at them), and attended support groups, etc. But if I don't have time alone, the rest may as well go because I'm no good to anyone.
I do hope you can find a regular time. As was suggested - one of the blessings of ADC is that you may have a chance for time for yourself. I know there are so many other things to do, but if there is a chance for that kind of break, take some time for yourself.
Carol see more
Question
Does anyone just need to go somewhere and be alone?
Absolutely! The only way I can say even somewhat sane is to have "alone time." I absolutely must have quiet for a time each day... Absolutely! The only way I can say even somewhat sane is to have "alone time." I absolutely must have quiet for a time each day to do my own form of meditation and just get in touch with myself.
I know how hard that is in a situation such as yours. It's not easy in mine, either. Some days I don't get "my time" but I get up extra early each morning in the unfailing attempt to do so.
Please consider your time alone a priority. Even if only for a few hours. Longer would be better but if that's not possible make some arrangement so that you can have a reasonable amount of quiet to spend the way you choose.
Your are not alone. We may not all choose to do the same thing with the time, but most of us desperately need it. If we don't take care of ourselves no one else will and we may not be able to take care of them, either.
Blessings, my friend. Do what is good for you to the best of your ability.
Carol see more
I know how hard that is in a situation such as yours. It's not easy in mine, either. Some days I don't get "my time" but I get up extra early each morning in the unfailing attempt to do so.
Please consider your time alone a priority. Even if only for a few hours. Longer would be better but if that's not possible make some arrangement so that you can have a reasonable amount of quiet to spend the way you choose.
Your are not alone. We may not all choose to do the same thing with the time, but most of us desperately need it. If we don't take care of ourselves no one else will and we may not be able to take care of them, either.
Blessings, my friend. Do what is good for you to the best of your ability.
Carol see more
Question
Any advice regarding splitting out joint financial accounts into his and her's prior applying for Medicaid?
I agree with everyone, here. Medicaid rules can vary with states so you need to make sure that the attorney knows current laws for your... I agree with everyone, here.
Medicaid rules can vary with states so you need to make sure that the attorney knows current laws for your state. Yes, attorneys cost money, so have your questions organized when you go to minimize time. But it's better to be safe than sorry. Don't this on your own could backfire.
I believe that your conversations with the caseworker will be recorded though again that could vary by state. The caseworker can be very helpful however some are way better than others. Sadly, this is the case with attorneys too.
Best of luck with this confusing situation. I hope you can find competent help.
Carol see more
Medicaid rules can vary with states so you need to make sure that the attorney knows current laws for your state. Yes, attorneys cost money, so have your questions organized when you go to minimize time. But it's better to be safe than sorry. Don't this on your own could backfire.
I believe that your conversations with the caseworker will be recorded though again that could vary by state. The caseworker can be very helpful however some are way better than others. Sadly, this is the case with attorneys too.
Best of luck with this confusing situation. I hope you can find competent help.
Carol see more
Question
Has my Dad lost the will to live?
Hi cmagmum, I'm sorry that you are going through this pain. You can certainly do everything you can to comfort and support your dad.... Hi cmagmum,
I'm sorry that you are going through this pain. You can certainly do everything you can to comfort and support your dad. It's possible that he'll work it through and move forward to a degree. It's likely even a doctor couldn't give you a sure answer.
Sadly, I do believe that your suspicions could be correct. It's not at all unusual for elderly spouses to die quite close together - sometimes within days. My mom lasted 5 months after my dad. She was done living when he died and we knew it. It just took her body some time to follow her heart.
However this turns out, you'll feel better knowing that you were there for your dad during his grief, ready to help in any way. If he's giving up, then that's his decision. there isn't likely anything you can do but love him.
Take care of yourself, too. It's a rough time for you all around.
Carol see more
I'm sorry that you are going through this pain. You can certainly do everything you can to comfort and support your dad. It's possible that he'll work it through and move forward to a degree. It's likely even a doctor couldn't give you a sure answer.
Sadly, I do believe that your suspicions could be correct. It's not at all unusual for elderly spouses to die quite close together - sometimes within days. My mom lasted 5 months after my dad. She was done living when he died and we knew it. It just took her body some time to follow her heart.
However this turns out, you'll feel better knowing that you were there for your dad during his grief, ready to help in any way. If he's giving up, then that's his decision. there isn't likely anything you can do but love him.
Take care of yourself, too. It's a rough time for you all around.
Carol see more
Question
Are there services available to help my disabled Dad shower and shave?
Thanks, Everishlass. Bathing is one of the hardest issues for many people to accomplish (as we've seen on this site). Sometimes an aide... Thanks, Everishlass. Bathing is one of the hardest issues for many people to accomplish (as we've seen on this site). Sometimes an aide is needed just for that.
But you're right - sometimes just an hour here or there from an agency can accomplish a lot, if only for some respite for the caregiver. It costs money but that hour or two a week can mean a lot.
Carol see more
But you're right - sometimes just an hour here or there from an agency can accomplish a lot, if only for some respite for the caregiver. It costs money but that hour or two a week can mean a lot.
Carol see more
Question
What do you do when elderly parent refuses needed care or legal considerations?
Many times that's all we can do. Wait until they make up their minds that they need to do something different. Often, when no one is... Many times that's all we can do. Wait until they make up their minds that they need to do something different. Often, when no one is trying to make them change, they will (I'm not talking about dementia - just older people who value their independence - they have a point).
It's about rights and sometimes that means a right to make the wrong decision. We can hope that the event that changes things won't be too horrible. But if we say that we'll help when they want it and they won't do anything different, sometimes we have to live with their decision.
Take care, all of you. You're doing great!
Carol see more
It's about rights and sometimes that means a right to make the wrong decision. We can hope that the event that changes things won't be too horrible. But if we say that we'll help when they want it and they won't do anything different, sometimes we have to live with their decision.
Take care, all of you. You're doing great!
Carol see more
Question
Why did they call about her weight?
Nursing homes don't like to see weight loss. As Geewiz said, that can be a sign of deteriorating health so they feel that they must... Nursing homes don't like to see weight loss. As Geewiz said, that can be a sign of deteriorating health so they feel that they must keep the family alert. This last weight loss isn't so much, but the week before is quite a lot. You'll want to stay in close communication with the nursing home.
Take care,
Carol see more
Take care,
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Question
Will Medicaid fully fund an Alzheimer's patient in a NH?
Excellent advice, Jeannegibbs. Many people are afraid that they will become destitute if their spouse goes on Medicaid in a nursing home.... Excellent advice, Jeannegibbs. Many people are afraid that they will become destitute if their spouse goes on Medicaid in a nursing home. While they certainly will have reduced assets, that's likely already happened.
Medicaid allows spouses to retain some assets as the community partner. While each state is different, they all have to have a program for the spouse. Your encouragement is excellent.
Carol see more
Medicaid allows spouses to retain some assets as the community partner. While each state is different, they all have to have a program for the spouse. Your encouragement is excellent.
Carol see more
Question
Has depression become an issue taking care of 3 people and not having time for yourself?
Bjeanette, first of all depression is common among caregivers. You are not at all alone. You have complications many don't have so... Bjeanette, first of all depression is common among caregivers. You are not at all alone. You have complications many don't have so don't be hard on yourself for struggling to see this through.
You've gotten several opinions here and all have some validity. So much depends on your personality.
I agree that grandchildren can be a wonderful gift but caring for them as much as you do seems a lot. Please re-read CountryMouse's contribution. You're a mom and you want desperately to help your "child" with his own very difficult situation. However you have a lot on your hands with your husband and as you wisely point out, some of your depression may be about what you know is coming. You can only do so much.
I do think it's time for you and your son to figure out some options that will give you some breaks. I also think that some counseling could help, but as with any self-care, this can seem impossible when you already have so little time for yourself. Just the idea of attending a support group can seem impossible. Yet, you have to do something for yourself or your own health will suffer even more than it has. If that happens, then what? Your son will be scrambling for help with his father and his kids - and maybe you.
See a doctor for yourself. Try a caregiver support group or seek a few sessions with a counselor about your depression. You can't be last on the list or you'll be lost.
Blessings,
Carol see more
You've gotten several opinions here and all have some validity. So much depends on your personality.
I agree that grandchildren can be a wonderful gift but caring for them as much as you do seems a lot. Please re-read CountryMouse's contribution. You're a mom and you want desperately to help your "child" with his own very difficult situation. However you have a lot on your hands with your husband and as you wisely point out, some of your depression may be about what you know is coming. You can only do so much.
I do think it's time for you and your son to figure out some options that will give you some breaks. I also think that some counseling could help, but as with any self-care, this can seem impossible when you already have so little time for yourself. Just the idea of attending a support group can seem impossible. Yet, you have to do something for yourself or your own health will suffer even more than it has. If that happens, then what? Your son will be scrambling for help with his father and his kids - and maybe you.
See a doctor for yourself. Try a caregiver support group or seek a few sessions with a counselor about your depression. You can't be last on the list or you'll be lost.
Blessings,
Carol see more
Question
There's nothing I can do to help. Any advice?
I agree that your brother needs help. I also agree that not everyone is in a position to jump in and take over the caregiving. Let go of... I agree that your brother needs help. I also agree that not everyone is in a position to jump in and take over the caregiving. Let go of the guilt and try to help your brother find a good nursing home for your father.
This article may help with your guilt: https://www.agingcare.com/articles/not-everyone-cut-out-to-be-a-caregiver-162192.htm
Take care of yourself and let your brother take care of himself. Your dad can receive good care, too, from hired help - though for some regions of the country this is harder to find than others.
Carol see more
This article may help with your guilt: https://www.agingcare.com/articles/not-everyone-cut-out-to-be-a-caregiver-162192.htm
Take care of yourself and let your brother take care of himself. Your dad can receive good care, too, from hired help - though for some regions of the country this is harder to find than others.
Carol see more
How long can someone go on in stage 7 Alzheimer's?
If she is comfortable there may not be much more that you can do, but if you need help, it's possible that she would qualify for hospice care. That could give you a little respite and give your mother more medical supervision. I'm sure that you are exhausted so any respite care would help. Talk with her doctor about options.
Please keep us informed about how you are doing.
Carol see more