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
Is it wrong to hope someone dies?
MarcoPolo, This is heartbreaking but as you can from the comments on this article you aren't alone. After a decade of caring for... MarcoPolo, This is heartbreaking but as you can from the comments on this article you aren't alone.
After a decade of caring for your mom, you've found a way for her to be safe and cared for and she's still making your life miserable. Even people who once had an even temperament can become nasty after dementia eats up the brain, but in some cases the nastiness was always there. You've had enough.
If she calls you more than once a day - and you know that she's okay - it's fine to not be "available" for each successive call. You don't have to be held hostage to her temperament even though she does have dementia. Please take care of yourself - guilt free.
Carol see more
After a decade of caring for your mom, you've found a way for her to be safe and cared for and she's still making your life miserable. Even people who once had an even temperament can become nasty after dementia eats up the brain, but in some cases the nastiness was always there. You've had enough.
If she calls you more than once a day - and you know that she's okay - it's fine to not be "available" for each successive call. You don't have to be held hostage to her temperament even though she does have dementia. Please take care of yourself - guilt free.
Carol see more
Question
My father can't live on his own anymore and I can't take care of him. Advice?
If you don't know who to call, go to www.aging.gov. You'll find your state services which will offer you a long list of places... If you don't know who to call, go to www.aging.gov. You'll find your state services which will offer you a long list of places where you can get advice about local services. Likely, your Area Agency on Aging will be the place to start and you'll find them there. Good luck!
Carol see more
Carol see more
Question
Could Mom's intermittent long term memory loss be related to being put on gralise/gabapentin/neurontin?
My dad was given neurontin and it had devastating effects for him - but that was in the form of additional pain. One friend and one... My dad was given neurontin and it had devastating effects for him - but that was in the form of additional pain. One friend and one relative had mental issues from neurontin.
Surely there is some other pain relief medication that could be used for your mom's condition. There's a point to what the doctor said when there is intractable pain, but in my opinion he hasn't tried enough for an alternative drug that could give her pain relief but not mess up her mind. I'd go for a second opinion. No reasonable doctor should resent a second opinion.
Good luck with this. Please update us when you can.
Carol see more
Surely there is some other pain relief medication that could be used for your mom's condition. There's a point to what the doctor said when there is intractable pain, but in my opinion he hasn't tried enough for an alternative drug that could give her pain relief but not mess up her mind. I'd go for a second opinion. No reasonable doctor should resent a second opinion.
Good luck with this. Please update us when you can.
Carol see more
Question
Where to place mom who needs high level of care but mind is intact?
Carolion, you have a situation that is frustrating for many. As was mentioned in this thread, just because a person is elderly and has... Carolion, you have a situation that is frustrating for many. As was mentioned in this thread, just because a person is elderly and has physical issues doesn't mean the dementia is present.
Yet most care facilities have a majority of people who aren't sharp mentally. This makes it hard for the person with good cognitive skills but poor physical health to find a good place. You'll find nursing homes with people who are in their 50s and are there because of MS and other diseases. They struggle with the same issue. If you are lucky, you may find a home with a few people who are cognitively sharp.
You have to do what must be done, so get her the physical care that she needs. Then keep her supplied with social and mental simulation and work with the social worker to make good things happen.
Take care,
Carol see more
Yet most care facilities have a majority of people who aren't sharp mentally. This makes it hard for the person with good cognitive skills but poor physical health to find a good place. You'll find nursing homes with people who are in their 50s and are there because of MS and other diseases. They struggle with the same issue. If you are lucky, you may find a home with a few people who are cognitively sharp.
You have to do what must be done, so get her the physical care that she needs. Then keep her supplied with social and mental simulation and work with the social worker to make good things happen.
Take care,
Carol see more
Question
Is hospice appropriate for a dementia patient (94) who possibly had a stroke?
Hospice is for your mother's comfort no matter what she understands or doesn't understand. The program did, years ago, start out... Hospice is for your mother's comfort no matter what she understands or doesn't understand. The program did, years ago, start out for cancer patients, but now hospice is for anyone who has a terminal disease and has six months or less to live. They care for many people with Alzheimer's and other types of dementia. Since hospice has been suggested to you, to for it! They are wonderful.
Take care of yourself and let us know how you are doing,
Carol see more
Take care of yourself and let us know how you are doing,
Carol see more
Question
How are you processing being a caregiver if you are in your 30's?
Lena, I'm so sorry that you've had to cope with so much at your young age. A memory unity is the only way to go. Even though your... Lena, I'm so sorry that you've had to cope with so much at your young age.
A memory unity is the only way to go. Even though your grandparents don't like the idea, they don't understand the dementia. Also, they probably have an outdated idea about care homes. While there are still some bad ones (much depends on where we live), most have improved. Many are wonderful.
You'll be around to keep an eye on things. You just won't be solely responsible and you'll be able to get on with your life at least to some degree.
You've honored the spirit of the promise you made to your dad. You need to do what is best for all. The following article may help you.
Blessings,
Carol
https://www.agingcare.com/articles/I-promised-my-parents-I-d-never-put-them-in-a-nursing-home-133904.htm see more
A memory unity is the only way to go. Even though your grandparents don't like the idea, they don't understand the dementia. Also, they probably have an outdated idea about care homes. While there are still some bad ones (much depends on where we live), most have improved. Many are wonderful.
You'll be around to keep an eye on things. You just won't be solely responsible and you'll be able to get on with your life at least to some degree.
You've honored the spirit of the promise you made to your dad. You need to do what is best for all. The following article may help you.
Blessings,
Carol
https://www.agingcare.com/articles/I-promised-my-parents-I-d-never-put-them-in-a-nursing-home-133904.htm see more
Question
Does anyone have an emotion lasting long after the experience is forgotten?
BillsLiz, this has to be hard for you, especially since your husband wasn't an angry person before the brain damage. As Pam said, anger... BillsLiz, this has to be hard for you, especially since your husband wasn't an angry person before the brain damage. As Pam said, anger and frustration often go with dementia. Some people can be helped by medication.
Your question about emotions lasting even when the reason for the anger is forgotten strikes me as insightful. I believe that is possible. The body remembers and can get in a pattern. Ask a doctor about this, too.
Please update us when you can. We are here so that you can share your story and we'll help in any way that we can.
Take care of yourself, too.
Carol see more
Your question about emotions lasting even when the reason for the anger is forgotten strikes me as insightful. I believe that is possible. The body remembers and can get in a pattern. Ask a doctor about this, too.
Please update us when you can. We are here so that you can share your story and we'll help in any way that we can.
Take care of yourself, too.
Carol see more
Question
With Medicaid, does Spousal Impoverishment apply with Home Health Care, or only with Managed Long Term Care?
jonico, you've gotten wonderful advice from community members who know what they are talking about. You are a wonderful guy. I hope... jonico, you've gotten wonderful advice from community members who know what they are talking about.
You are a wonderful guy. I hope that you and your wife will have a lot of precious time. even though this will be a hard journey to travel.
Each state has different Medicaid laws. To be completely certain about what you plan, I'd check with a Medicaid attorney. You may want to ask you State Attorney General's office for a referral. I wouldn't think you'd need more than one appointment to get this settled.
Best wishes for you and your wife. Please keep in touch,
Carol see more
You are a wonderful guy. I hope that you and your wife will have a lot of precious time. even though this will be a hard journey to travel.
Each state has different Medicaid laws. To be completely certain about what you plan, I'd check with a Medicaid attorney. You may want to ask you State Attorney General's office for a referral. I wouldn't think you'd need more than one appointment to get this settled.
Best wishes for you and your wife. Please keep in touch,
Carol see more
Question
Are there counseling services for senior child taking care of an elderly adult?
vpaleno, as you can tell from the responses - which will keep coming - most of us truly do know what you're feeling. Support groups do... vpaleno, as you can tell from the responses - which will keep coming - most of us truly do know what you're feeling. Support groups do help, and even here online we hope we can give you some relief. However, a few sessions with a counselor would be excellent. If you can't find one who seems to have specific knowledge in caregiving, you can still benefit. You may want to look for someone who does grief counseling since part of what we deal with if grief and loss - of our own lives as well as that of our loved one.
I applaud you for understanding that your need to talk it out. Journaling helps many people, but you also should reach out to someone who can listen to the way you really feel without you holding anything back.
There are terrific suggestions on this thread so I hope that you'll take time to read it all.
Take care of yourself!
Carol see more
I applaud you for understanding that your need to talk it out. Journaling helps many people, but you also should reach out to someone who can listen to the way you really feel without you holding anything back.
There are terrific suggestions on this thread so I hope that you'll take time to read it all.
Take care of yourself!
Carol see more
Question
My mom (88) has informed my dad (86) that after 4 pm he is not allowed water. Advice?
It's not as uncommon as we'd think that couples who both have AD don't do well living together. Your mother can't care for... It's not as uncommon as we'd think that couples who both have AD don't do well living together. Your mother can't care for your dad properly (validation, compassion, etc.)
I think he'd do better in a good assisted living facility. She may, as well. They don't have to be together. Then maybe they'd enjoy meals together or other times to connect.
You're smart to be thinking of options, anyway. This doesn't sound like a good arrangement (water in the evening aside).
Take care,
Carol see more
I think he'd do better in a good assisted living facility. She may, as well. They don't have to be together. Then maybe they'd enjoy meals together or other times to connect.
You're smart to be thinking of options, anyway. This doesn't sound like a good arrangement (water in the evening aside).
Take care,
Carol see more
Question
How can I sign checks to pay for my Mom's stuff while she's in interim care?
GardenArtist offered valuable information. In my state, what I had to do was sign my mother's name on the check and beneath that write... GardenArtist offered valuable information. In my state, what I had to do was sign my mother's name on the check and beneath that write "by....my name, POA." This was a durable POA with me listed first and then alternates. The bank had a copy of the POA - that can be important. I'd check with the bank that you would use.
Take care,
Carol see more
Take care,
Carol see more
Question
Do dementia patients get clingy?
This is often called shadowing. People with dementia can become very fearful, which is understandable considering theirlife as they know it... This is often called shadowing. People with dementia can become very fearful, which is understandable considering theirlife as they know it has been turned upside down. You are familiar. You are the protector. So she wants to see you (her memory of you will fade when she can't see you). That doesn't mean that you have to give in to it all but it does help to understand that she is suffering from a type of separation anxiety.
Good answers on this thread! Keep reading comments from people who know and update us when you can about how you are doing.
Carol see more
Good answers on this thread! Keep reading comments from people who know and update us when you can about how you are doing.
Carol see more
Question
How to cope when even Mom's physical therapist calls me all upset?
OTJenn, thanks for your answer as therapist. The rest of the answers are good, too. I know how tricky medications can be when it comes to... OTJenn, thanks for your answer as therapist. The rest of the answers are good, too.
I know how tricky medications can be when it comes to keeping up needed supplies. Since I live in a blizzard prone area, I have always had a mentality that I need to plan ahead for times when we can't get out.
Hadnuff, you've contributed so much to this community. I'm glad that you could vent your frustrations and I sincerely hope that you didn't let guilt get you down. No matter how well we plan, things beyond our control happen. That is life.
Even the most dedicated caregiver cannot always have everything prepared perfectly so that all bases are covered at all times.
I still remember times when I "failed" my loved ones and endure some guilt - followed by a nudge from my sister to take my own advice. We are not God. We do our best. In your case, as in most, everyone lived through it. Bless you for caring so much. Relax and move forward - and take care of the caregiver. Shove guilt out the door.
Carol see more
I know how tricky medications can be when it comes to keeping up needed supplies. Since I live in a blizzard prone area, I have always had a mentality that I need to plan ahead for times when we can't get out.
Hadnuff, you've contributed so much to this community. I'm glad that you could vent your frustrations and I sincerely hope that you didn't let guilt get you down. No matter how well we plan, things beyond our control happen. That is life.
Even the most dedicated caregiver cannot always have everything prepared perfectly so that all bases are covered at all times.
I still remember times when I "failed" my loved ones and endure some guilt - followed by a nudge from my sister to take my own advice. We are not God. We do our best. In your case, as in most, everyone lived through it. Bless you for caring so much. Relax and move forward - and take care of the caregiver. Shove guilt out the door.
Carol see more
Question
Would I be held legally responsible if Mom refuses to do (or not do) what the doctor orders and something happ...
It's best to ask an attorney because state laws may differ as far as what the duties of a POA are, but I agree with angelrescue that... It's best to ask an attorney because state laws may differ as far as what the duties of a POA are, but I agree with angelrescue that generally a POA is for when the person who assigned it is unable to make decisions of certain types either because of health issues or dementia. Guardianship is stronger.
As to whether we are to keep them our elders safe or make them happy - that's an individual decision. Unless someone has dementia- and being eccentric not the same thing as having dementia - my personal belief is that they have a right to be as happy as they can while they still have some life left.
This does not carry into areas where they can harm others such as driving a car when they are no longer capable of doing so safely.However, if they are not hurting others and don't have dementia then I'd vote for happiness. That would be my preference. If my choices shortened my life then so be it. Others disagree. However, I've seen what taking away what these elders deem pleasures (even if younger adults disagree) can do to the elder. Some just give up and die.
The bottom line as far as the original question goes is check state law if you are worried about liability with being POA.
Take care, everyone. Great discussion!
Carol see more
As to whether we are to keep them our elders safe or make them happy - that's an individual decision. Unless someone has dementia- and being eccentric not the same thing as having dementia - my personal belief is that they have a right to be as happy as they can while they still have some life left.
This does not carry into areas where they can harm others such as driving a car when they are no longer capable of doing so safely.However, if they are not hurting others and don't have dementia then I'd vote for happiness. That would be my preference. If my choices shortened my life then so be it. Others disagree. However, I've seen what taking away what these elders deem pleasures (even if younger adults disagree) can do to the elder. Some just give up and die.
The bottom line as far as the original question goes is check state law if you are worried about liability with being POA.
Take care, everyone. Great discussion!
Carol see more
Question
When is it time to discuss a nursing home with my stepdad?
I think the time is now. For your dad's sake he needs to get away from the yelling and abusive environment he's in with your mom.... I think the time is now. For your dad's sake he needs to get away from the yelling and abusive environment he's in with your mom. Having someone come to the home to help is a good short-term move, but if he were with professionals who know how to treat someone with dementia (validation and other techniques) he would like do much better.
Even with someone coming in to help, he would have your mother yelling at him the rest of the time. Do what you can to remove him from this environment.
The exception would be if your parents live in an area of the country with very bad nursing homes. If that's the case, you are between a rock and a hard place. In-home help may be better then. Research should help you decide.
Take care,
Carol see more
Even with someone coming in to help, he would have your mother yelling at him the rest of the time. Do what you can to remove him from this environment.
The exception would be if your parents live in an area of the country with very bad nursing homes. If that's the case, you are between a rock and a hard place. In-home help may be better then. Research should help you decide.
Take care,
Carol see more
Question
How to cope with hurtful accusations from Mother with dementia?
Sophe509 you've received some sound advice from caring and informed community members. I have to say that I hadn't thought of... Sophe509 you've received some sound advice from caring and informed community members. I have to say that I hadn't thought of Pamstegma's advice but she's right. There is a legal risk. Even though this is the disease talking - and that is what you have to continually tell yourself - for your own protection you should follow Pam's advice. You don't want to be left with a legal issue after all you've been through.
I went through the "she's taking my things" routine that many of us do, simply because my mother couldn't remember where she put things or what she wanted the day before. That hurt horribly, so I do understand how painful these accusations can be. But when the accusations are about physical abuse and you can't prove otherwise, you could be on dangerous ground.
Please keep us updated when you can. We want to know that you are all right.
Carol see more
I went through the "she's taking my things" routine that many of us do, simply because my mother couldn't remember where she put things or what she wanted the day before. That hurt horribly, so I do understand how painful these accusations can be. But when the accusations are about physical abuse and you can't prove otherwise, you could be on dangerous ground.
Please keep us updated when you can. We want to know that you are all right.
Carol see more
Question
How can I find home living for me and my wife free or of low cost?
Ahmed180 you can look for resources under www.aging.gov. If you want to stay in GA, look under state services and then under Georgia.... Ahmed180 you can look for resources under www.aging.gov. If you want to stay in GA, look under state services and then under Georgia. You'll find a long list of services for elders. Most of these links will have contact information so if you keep trying you'll find people to guide you.
Take care,
Carol see more
Take care,
Carol see more
Question
What do you do to distract Alzheimer's patients from going out so often?
Tidytommy had some great suggestions. Distraction is likely the best way to go. Keep in mind things that your loved one likes to do and be... Tidytommy had some great suggestions. Distraction is likely the best way to go. Keep in mind things that your loved one likes to do and be ready to come up with some ideas when he or she wants to go out. Arguing won't work and will just cause more aggression, so distraction/redirection seem best. Easy? No. But this may be your only option.
Please keep checking in. People here have gone through what you are going through now.
Carol see more
Please keep checking in. People here have gone through what you are going through now.
Carol see more
Question
Do dementia patients lose volume in their speaking voices?
I like the suggestions about seeing an ENT and also speech therapy if he's having trouble speaking. However, you mentioned that he... I like the suggestions about seeing an ENT and also speech therapy if he's having trouble speaking. However, you mentioned that he seemed to be telling stories in a dramatic fashion. Is he really talking to you or is he just reliving an even for himself? If he's just reliving an event, then there's no need for you to ask him to repeat it. I'd just let it be.
It's all in the context of when he does this.
Take care,
Carol see more
It's all in the context of when he does this.
Take care,
Carol see more
How much does Medicaid pay for me to care for my Mom in my home?
Take care,
Carol see more