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.
Show:
Articles Question
Question
What to do about "Shadowing?"
wamnanealz, many of us know about that sense of "betrayal" and the feeling that they will be sad once placed in care. The fact... wamnanealz, many of us know about that sense of "betrayal" and the feeling that they will be sad once placed in care. The fact is, many adjust exceptionally well though some take more time than others.
The quality of care matters a lot, and that's not always something that we can control. So much depends on where we live.
I think that most will feel anxious but some of that they pick up from us. If we feel guilty and worried they will be worried. So, try to work on getting rid of the guilt.
Please update us when you can.
Carol see more
The quality of care matters a lot, and that's not always something that we can control. So much depends on where we live.
I think that most will feel anxious but some of that they pick up from us. If we feel guilty and worried they will be worried. So, try to work on getting rid of the guilt.
Please update us when you can.
Carol see more
Question
How do we validate concerns and keep our sanity?
I think many of us have witnessed this. As you know, the frustration is overwhelming. We leave the doctor's office with nothing gained.... I think many of us have witnessed this. As you know, the frustration is overwhelming. We leave the doctor's office with nothing gained.
This also can happen when out-of-town relatives come to visit. We - the caregivers - have kept the family up-to-date. We prepare them for the changes they will see. But when they arrive for a short visit, Mom (or Dad or whomever) is so thrilled to see the visitors that they act nearly normal. As soon as the visitors leave, our sick loved one collapses. We look like drama queens and it's all back to normal.
Hang in, friends. It's good to know that others have seen the same thing.
Carol see more
This also can happen when out-of-town relatives come to visit. We - the caregivers - have kept the family up-to-date. We prepare them for the changes they will see. But when they arrive for a short visit, Mom (or Dad or whomever) is so thrilled to see the visitors that they act nearly normal. As soon as the visitors leave, our sick loved one collapses. We look like drama queens and it's all back to normal.
Hang in, friends. It's good to know that others have seen the same thing.
Carol see more
Question
Will gifts or loans disqualify my parents for Medicaid?
Hi Dale, Many people make arrangements to pay a family caregiver for help rather than hire someone else. However, it's best to have an... Hi Dale,
Many people make arrangements to pay a family caregiver for help rather than hire someone else. However, it's best to have an elder law attorney who knows your state's Medicaid laws draw up a contract. Advice from an attorney is well worth the price in instances like this.
Please update us as you go through the process.
Carol see more
Many people make arrangements to pay a family caregiver for help rather than hire someone else. However, it's best to have an elder law attorney who knows your state's Medicaid laws draw up a contract. Advice from an attorney is well worth the price in instances like this.
Please update us as you go through the process.
Carol see more
Question
What to do about "Shadowing?"
Behavioral clinics aren't everywhere but I'm delighted to hear that insurance paid. It's worth a try. I've read enough... Behavioral clinics aren't everywhere but I'm delighted to hear that insurance paid. It's worth a try. I've read enough about it to know that a certain percentage of people improve in their behaviors significantly because of the therapy. It's worth checking into. see more
Question
What to do about "Shadowing?"
I'm wondering if it isn't time for memory care. If he was shoving you around, there could be more physical abuse to come. As was... I'm wondering if it isn't time for memory care. If he was shoving you around, there could be more physical abuse to come. As was mentioned - for both of you it may be best to get him care by professionals.
You need time to yourself and you need to protect yourself. You are trying your best and doing well but there is only so much you can do. Violence against the caregiver is not uncommon. Your husband can't help it but you shouldn't put yourself in a position where you can be seriously hurt. With him in memory care, you'll be able to see him and be his advocate but should there be a physical attack you can get help. You can leave and get away from it. This is a hard decision but sometimes the best for everyone.
Please update us on how you are doing.
Carol see more
You need time to yourself and you need to protect yourself. You are trying your best and doing well but there is only so much you can do. Violence against the caregiver is not uncommon. Your husband can't help it but you shouldn't put yourself in a position where you can be seriously hurt. With him in memory care, you'll be able to see him and be his advocate but should there be a physical attack you can get help. You can leave and get away from it. This is a hard decision but sometimes the best for everyone.
Please update us on how you are doing.
Carol see more
Question
How do we validate concerns and keep our sanity?
Some terrific points made here. Validation is often used with redirection. We validate simply by taking them seriously, but we redirect... Some terrific points made here. Validation is often used with redirection. We validate simply by taking them seriously, but we redirect them to something else to take their minds off of whatever the obsession is.
Distracting and redirecting are all part of the mix. The reason that validation gets so much attention is that not so many years back the trend was to "reorient" the person - meaning to make them see our way is right. That doesn't work - never did - for people whose minds don't work like ours. So validating them as people who have opinions and thoughts that are true in their world is important to keep from always telling them that they are wrong. But the solution that many of you have used is redirection. Great discussion!
Carol see more
Distracting and redirecting are all part of the mix. The reason that validation gets so much attention is that not so many years back the trend was to "reorient" the person - meaning to make them see our way is right. That doesn't work - never did - for people whose minds don't work like ours. So validating them as people who have opinions and thoughts that are true in their world is important to keep from always telling them that they are wrong. But the solution that many of you have used is redirection. Great discussion!
Carol see more
Question
How do we validate concerns and keep our sanity?
Elder love is a wonderful antidepressant, JessieBelle! And I agree - as far as any treatment goes much depends on age and life expectancy.... Elder love is a wonderful antidepressant, JessieBelle!
And I agree - as far as any treatment goes much depends on age and life expectancy. In my opinion, I wouldn't want to put a person of any age through something that will likely cause anxiety and discomfort and little benefit.
Even the use of antidepressants can be a roller coaster ride. While some people respond positively to the first one tired, many don't and can even become more depressed. It often takes experimentation, and quite frankly, the antidepressants on the market aren't targeting the right chemicals for many.
I'm not against trying them by any means and I do know that many benefit. I'm simply making the point that, depending on age and other factors, how far you take this can vary.
You've got great instincts, Jessiebelle. In the end that's often our best guide. Whether to validate something or "shoo away the monsters" (which is a form of validation, anyway), we know our loved one and have some idea of how he or she will respond. Caregivers need to be listened to for many reasons but one is that we know our loved ones in ways that others don't.
Take care all of you fantastic people. I learn so much from all of you!
Carol see more
And I agree - as far as any treatment goes much depends on age and life expectancy. In my opinion, I wouldn't want to put a person of any age through something that will likely cause anxiety and discomfort and little benefit.
Even the use of antidepressants can be a roller coaster ride. While some people respond positively to the first one tired, many don't and can even become more depressed. It often takes experimentation, and quite frankly, the antidepressants on the market aren't targeting the right chemicals for many.
I'm not against trying them by any means and I do know that many benefit. I'm simply making the point that, depending on age and other factors, how far you take this can vary.
You've got great instincts, Jessiebelle. In the end that's often our best guide. Whether to validate something or "shoo away the monsters" (which is a form of validation, anyway), we know our loved one and have some idea of how he or she will respond. Caregivers need to be listened to for many reasons but one is that we know our loved ones in ways that others don't.
Take care all of you fantastic people. I learn so much from all of you!
Carol see more
Question
Crying and moaning in sleep. Is this common with dementia?
I don't know that crying and moaning in sleep is unusual with dementia - everyone is so different. I do know that this has to be... I don't know that crying and moaning in sleep is unusual with dementia - everyone is so different. I do know that this has to be terribly upsetting for you. I'd talk with the doctor about it and make certain that she doesn't have any pain that could be eliminated such as something from a UTI, arthritis or other issues that may go under the radar.
Please keep us updated,
Carol see more
Please keep us updated,
Carol see more
Question
How do we validate concerns and keep our sanity?
I agree with those who say try validation. In my view, there's some chance that once she feels someone (you) is/are listening - really... I agree with those who say try validation. In my view, there's some chance that once she feels someone (you) is/are listening - really listening, she may improve. There is some chance that depression or another mental illness is part of her history. If so, treatment for that may help so it's worth a try. However, some of this may be a reflection of the dynamic that's been established.
I'd suggest a physical and if she will do it, a psychological workup, but I'd also suggest that you try validation. See where it gets you. It shouldn't hurt and it may help at least a little.
By the way, I'd suggest the physical first as just something we all need to do and I'd write the doctor a note ahead of time saying that you'd like him/her to watch for a reason to refer her to a neurologist or psychologist. In your letter, list specific reasons for your thinking. Often people will follow up with these issues when a doctor refers them when they wouldn't listen to family.
Good luck and take care of yourself!
Carol see more
I'd suggest a physical and if she will do it, a psychological workup, but I'd also suggest that you try validation. See where it gets you. It shouldn't hurt and it may help at least a little.
By the way, I'd suggest the physical first as just something we all need to do and I'd write the doctor a note ahead of time saying that you'd like him/her to watch for a reason to refer her to a neurologist or psychologist. In your letter, list specific reasons for your thinking. Often people will follow up with these issues when a doctor refers them when they wouldn't listen to family.
Good luck and take care of yourself!
Carol see more
Question
If my aunt is already receiving a spousal VA death benefit, why does she have to provide all the forms to get...
Not everyone qualifies for all VA programs. Check with the VA to see if you need to file for both or even if you can. I know it's a... Not everyone qualifies for all VA programs. Check with the VA to see if you need to file for both or even if you can. I know it's a pain but it's the only way that I know of to be sure.
Take care,
Carol see more
Take care,
Carol see more
Question
What happens when after all the rigormorole with applying for Medicaid, the applicant is denied or penalized?
Jeannegibbs is right. If you want to "protect" the money from Medicaid, then you need to see an elder law or estate attorney to... Jeannegibbs is right. If you want to "protect" the money from Medicaid, then you need to see an elder law or estate attorney to see if there is a legitimate way to do so.
In general, while we'd all like to hang on to the family money, it's there to care for the people who earned it. Medicaid is a program for those who have virtually no assets. So most people have to "spend down" their assets to qualify. There are exceptions so if significant assets exist, it can pay to see an attorney to see what legitimate avenues exist for protecting the assets. Spouses do get certain amounts that they can keep as do disabled children (in many states).
Good luck. It's not always easy to understand these programs.
Carol see more
In general, while we'd all like to hang on to the family money, it's there to care for the people who earned it. Medicaid is a program for those who have virtually no assets. So most people have to "spend down" their assets to qualify. There are exceptions so if significant assets exist, it can pay to see an attorney to see what legitimate avenues exist for protecting the assets. Spouses do get certain amounts that they can keep as do disabled children (in many states).
Good luck. It's not always easy to understand these programs.
Carol see more
Question
My Mother is in home and wants to do nothing. How can I get her to socialize a little?
Depression could be the issue, so I agree that a consultation with the doctor would be a good idea. Aside from that, try to remember that... Depression could be the issue, so I agree that a consultation with the doctor would be a good idea.
Aside from that, try to remember that you, and likely the facility, are doing all that you can. Your mother may choose to be a loner and there may be nothing that you can do about it.
My mother got much the same way except that she was good with the staff. Before the nursing home, she was worse in general. But she never would take part in all of the socializing the nursing home provided. She liked her room, her TV and the treats I brought on my daily visits, but she became more and more averse to interacting with other people.
Work with the doctor, but understand that antidepressants are tricky and can have side effects. They work well for some people but can make others worse.
What I'm saying is don't expect miracles. Sometimes they happen, but more often we have to accept the fact that people with dementia and pain issues have a right to how they want to live their lives. Keeping her pain free (if possible), safe and relatively content - even if she just watches one DVD - is better than a lot of anxiety (in my opinion).
I hope that the doctor can help.
Take care,
Carol see more
Aside from that, try to remember that you, and likely the facility, are doing all that you can. Your mother may choose to be a loner and there may be nothing that you can do about it.
My mother got much the same way except that she was good with the staff. Before the nursing home, she was worse in general. But she never would take part in all of the socializing the nursing home provided. She liked her room, her TV and the treats I brought on my daily visits, but she became more and more averse to interacting with other people.
Work with the doctor, but understand that antidepressants are tricky and can have side effects. They work well for some people but can make others worse.
What I'm saying is don't expect miracles. Sometimes they happen, but more often we have to accept the fact that people with dementia and pain issues have a right to how they want to live their lives. Keeping her pain free (if possible), safe and relatively content - even if she just watches one DVD - is better than a lot of anxiety (in my opinion).
I hope that the doctor can help.
Take care,
Carol see more
Question
My spouse and I continued fed health ins, but did not join Medicare part B. Late enrollment cost now?
Part D is for prescriptions so that may be the problem. Part B is more for doctors and some aids. I don't think there's a penalty... Part D is for prescriptions so that may be the problem. Part B is more for doctors and some aids. I don't think there's a penalty for signing up for Part D late, but you usually have to do that during open enrollment which starts in November for 2016.
Please update us when you can.
Carol see more
Please update us when you can.
Carol see more
Question
My spouse and I continued fed health ins, but did not join Medicare part B. Late enrollment cost now?
There will likely be a late enrollment fee. The reason they do that is that they don't want people to wait until they are sick before... There will likely be a late enrollment fee. The reason they do that is that they don't want people to wait until they are sick before they enroll. I can't tell you the fee but you can likely find out on the Medicare site at medicare.gov or at least you'll be directed to information. Signing up for Mymedicare is helpful.
Take care,
Carol see more
Take care,
Carol see more
Question
How can you get someone into a memory care unit when there is no money and we don't have the time to wait for...
You're right - this is unfair. If you reported the income that should have been used for her care and she still should have the waiver... You're right - this is unfair. If you reported the income that should have been used for her care and she still should have the waiver once that money was used. The problem is things like waivers depend on the good heartedness of your state. Sadly, some states support senior care far better than others. I wish I had some legal knowledge to help you get through this but I don't. I just wanted you to know that you've been heard. Please keep watching for input since there are people on agingcare who specialize in this area.
Take care,
Carol see more
Take care,
Carol see more
Question
Who do I contact about a caregiver that might be putting down more hours than she actually works?
Sendme2help, I understand what you are saying. That's why proof needs to be looked for. It's possible that the caregiver is running... Sendme2help, I understand what you are saying. That's why proof needs to be looked for. It's possible that the caregiver is running errands or something because the friend told her to. But then again, it's possible that she's cheating the friend, the insurance company and the government. Getting the facts is always important before accusing people. With caregiving, it can be especially tricky since expectations can vary. It's important to give the accused person a way to explain.
It's troubling either way.
Carol see more
It's troubling either way.
Carol see more
Question
I'm being accused of stealing/ misusing my granny's money. Any advice?
I hope that you've kept receipts for what's been purchased. Even with a signed DPOA, sometimes things have to be proven, especially... I hope that you've kept receipts for what's been purchased. Even with a signed DPOA, sometimes things have to be proven, especially if the family turns on you. You weren't clear about who is accusing you, so like the others on this thread, I'd have to ask for clarification.
If your agreement with your granny was a legal document, that should be very helpful in proving your cause. We can hope that they - whoever they are - are just blustering now that Granny's house will go up for sale. They need to know that the money from the house will go to Granny's care.
Keep time sheets and receipts for everything.
Good luck. Please update us when you can.
Carol see more
If your agreement with your granny was a legal document, that should be very helpful in proving your cause. We can hope that they - whoever they are - are just blustering now that Granny's house will go up for sale. They need to know that the money from the house will go to Granny's care.
Keep time sheets and receipts for everything.
Good luck. Please update us when you can.
Carol see more
Question
Could someone describe a "good day vs a bad day"? My husband has been diagnosed with mild vascular dementia.
My definition of a good day was when anxiety was at a low level. The physical things weren't as hard to handle, but when anxiety,... My definition of a good day was when anxiety was at a low level. The physical things weren't as hard to handle, but when anxiety, paranoia and generalized fear took over there was a terrible feeling of helplessness on my part. I hated seeing that.
I hate seeing this with the person now in my care, as well. Anxiety is so debilitating and the onlooker can feel completely at a loss about what to do to ease this person's internal. hell. Of course, staying with a schedule, limiting outside stimulation and those things can help but sometimes the anxiety is simply coming from the person's chemistry and it's hard to help. Just comforting and waiting it out is sometimes all we can do.
All of the things described in this thread are so helpful. Keep contributing your definition of good days, vs. bad days. It's different for everyone and different in every stage.
Carol see more
I hate seeing this with the person now in my care, as well. Anxiety is so debilitating and the onlooker can feel completely at a loss about what to do to ease this person's internal. hell. Of course, staying with a schedule, limiting outside stimulation and those things can help but sometimes the anxiety is simply coming from the person's chemistry and it's hard to help. Just comforting and waiting it out is sometimes all we can do.
All of the things described in this thread are so helpful. Keep contributing your definition of good days, vs. bad days. It's different for everyone and different in every stage.
Carol see more
Question
My friend is far away, dying of ALS. I am at a loss as to what to say to him. Any suggestions?
If possible, I'd let your friend lead the way. The responses here were terrific - keep it light unless she wants to talk about dying.... If possible, I'd let your friend lead the way. The responses here were terrific - keep it light unless she wants to talk about dying. Much depends on your friend's personality and how close you are. Most people hate to feel "pitied" but appreciate empathy.
It's hard to communicate by phone when someone is this ill, but again, as was suggested, talking about good memories rarely fails. But leave an opening in case she wants to say goodbye. There are people who don't like the fact that people won't talk about death.
It's such an individual matter that you'll have to rely on your instincts and how your friend reacts to what you say. The main thing to remember is that she'll know that you care because you keep trying. You really can't go too wrong if you let your love come through.
Also, write notes. Cheerful memories that can be re-read. It's not as exhausting to read a note or have it read to you as it is to keep up a phone conversation. Notes can be saved and savored. Fun note cards would add to the experience.
Please update us on how your friend - and you - are doing.
Carol see more
It's hard to communicate by phone when someone is this ill, but again, as was suggested, talking about good memories rarely fails. But leave an opening in case she wants to say goodbye. There are people who don't like the fact that people won't talk about death.
It's such an individual matter that you'll have to rely on your instincts and how your friend reacts to what you say. The main thing to remember is that she'll know that you care because you keep trying. You really can't go too wrong if you let your love come through.
Also, write notes. Cheerful memories that can be re-read. It's not as exhausting to read a note or have it read to you as it is to keep up a phone conversation. Notes can be saved and savored. Fun note cards would add to the experience.
Please update us on how your friend - and you - are doing.
Carol see more
Where can I get truly independent advice on medical insurance?
Go to www.medicare.gov to look over plans.
Then, you'd need Medicare D, which is for prescriptions. This is the poorest part of Medicare, though these last years the government has been trying to close the "donuthole." This is the point when you hit a certain amount and must pay the bulk of the cost before you hit the catastrophic amount. Still, the donuthole won't be closed for years, so it's a problem.
If you want to claim Medicaid status through an attorney, that attorney should only charge you a percentage AFTER you win. . Otherwise all you owe is cost such as photo copies of medical records, etc. And $6000 sounds excessive
From the sound of your financial situation, you may already qualify for Medicaid. I'd do as MaggieMarshall suggests and start making calls. The new www.aging.gov site will lead you to your state resources.
Good luck! Please update us on your situation.
Carol see more