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
What's the best way to answer certain questions from a dementia patient?
Going with the person is far kinder than "telling the truth." It's not lying, it's compassion. If a spouse has been gone... Going with the person is far kinder than "telling the truth." It's not lying, it's compassion. If a spouse has been gone for decades and that is the time frame where the person is in his or her mind, then the grief is new and fresh and real every time they are told about the death.
In my opinion, it's far kinder to say "you'll see him soon" or "he's out for now but you'll see him soon" and then move on with some kind of distraction. Yes, you'll revisit this again and again no matter what you say, so rehearse an answer that is compassionate and not too detailed. Their reality isn't ours - we need to get into their heads and understand where they are. Their brains are broken - we work with that. Then we try to answer in a way that isn't going to bring on fresh grief.
Carol see more
In my opinion, it's far kinder to say "you'll see him soon" or "he's out for now but you'll see him soon" and then move on with some kind of distraction. Yes, you'll revisit this again and again no matter what you say, so rehearse an answer that is compassionate and not too detailed. Their reality isn't ours - we need to get into their heads and understand where they are. Their brains are broken - we work with that. Then we try to answer in a way that isn't going to bring on fresh grief.
Carol see more
Question
Is it wrong to hope someone dies?
toomuch4me, your thinking is human. In my opinion you need to get out of this situation. You are being abused and there's no reason to... toomuch4me, your thinking is human. In my opinion you need to get out of this situation. You are being abused and there's no reason to take it.
If no one else will take care of him, call social services. Even if his behavior is caused by dementia, it doesn't seem to be a good situation for you or even for him. You aren't bad for thinking this way, but it's time to make different arrangements.
Take care of yourself while you still can.
Carol see more
If no one else will take care of him, call social services. Even if his behavior is caused by dementia, it doesn't seem to be a good situation for you or even for him. You aren't bad for thinking this way, but it's time to make different arrangements.
Take care of yourself while you still can.
Carol see more
Question
My husband is eligible for burial at Arlington but wait is 4 months. Does the VA do storage?
twopupsmom, it's so sad that you have to be so "practical" at this hard time, but you are doing very well. Thanks to all of... twopupsmom, it's so sad that you have to be so "practical" at this hard time, but you are doing very well. Thanks to all of you for these wonderful comments - all feasible options. The idea blannie had is a good one that I didn't know about - cremation in uniform. It is something to consider. These things do get complicated for those who want to be buried in uniform and in Arlington but we want to honor our loved one's last wishes the best we can.
Try to take care of yourself. We're thinking of you,
Carol see more
Try to take care of yourself. We're thinking of you,
Carol see more
Question
How can I stop feeling guilty for dreading to visit mother in SNF?
It's perfectly normal to dread these visits. We hate seeing the decline, we hate the inability to communicate like we used to, we hate... It's perfectly normal to dread these visits. We hate seeing the decline, we hate the inability to communicate like we used to, we hate the knowing that our loved one is nearing death - even if that death is years away. And, underneath, we hate knowing that one day this will likely be us. It's the life cycle and these visits put it right in our face.
Sooooo - deal with the unearned guilt by doing what you must do without beating yourself up. Then, bring things along that may help the conversations.
Jeannegibbs contributed a great list on this thread. What you bring will depend a great deal on where your mom is physically and cognitively. It was different for each of my loved ones, but I went with their interests.
Don't forget that watching an old movie together on DVD (your mom's memories, not what you may think of as old :) or depending on her age, a DVD of the old Lawrence Welk shows or some old comedies (I Love Lucy, etc.). You can still be together, laugh, touch and communicate however you can, but there is a distraction.
Blessings, my friend. You are just like the rest of us. This isn't easy.
Take care,
Carol see more
Sooooo - deal with the unearned guilt by doing what you must do without beating yourself up. Then, bring things along that may help the conversations.
Jeannegibbs contributed a great list on this thread. What you bring will depend a great deal on where your mom is physically and cognitively. It was different for each of my loved ones, but I went with their interests.
Don't forget that watching an old movie together on DVD (your mom's memories, not what you may think of as old :) or depending on her age, a DVD of the old Lawrence Welk shows or some old comedies (I Love Lucy, etc.). You can still be together, laugh, touch and communicate however you can, but there is a distraction.
Blessings, my friend. You are just like the rest of us. This isn't easy.
Take care,
Carol see more
Question
Hospital won't release my mom's health information without her verbally consenting. What are my rights?
The largest hospital in our locale has a password set up that gets people with these issues. I hope that your mom can get through to them... The largest hospital in our locale has a password set up that gets people with these issues. I hope that your mom can get through to them that you are who you say you are. After you are through this round, ask about setting up a password with her local hospital network account. That may help in the future.
Good luck. This is so frustrating for people who are doing the right thing, but without these safeguards in place, anyone can get our medical information. My, how times have changed - for better and worse.
Best wishes,
Carol see more
Good luck. This is so frustrating for people who are doing the right thing, but without these safeguards in place, anyone can get our medical information. My, how times have changed - for better and worse.
Best wishes,
Carol see more
Question
What happens towards the end of life with a Dementia patient?
The community has responded wonderfully, bookworm54, so read all of the responses so far. My vote at this stage is to always go for... The community has responded wonderfully, bookworm54, so read all of the responses so far.
My vote at this stage is to always go for comfort. The body shuts down in last stages and people often have a hard time letting caregivers know how they feel. Watch the body language to see if anything indicates pain. Consider hospice care if hospice is not already involved. They know what to watch for to ensure comfort.
Try to take care of yourself, too.
Carol see more
My vote at this stage is to always go for comfort. The body shuts down in last stages and people often have a hard time letting caregivers know how they feel. Watch the body language to see if anything indicates pain. Consider hospice care if hospice is not already involved. They know what to watch for to ensure comfort.
Try to take care of yourself, too.
Carol see more
Question
Will I ever be me, ever again?
Calista, we learn best from those who have traveled a similar road. Please re-read Jeannegibbs' comment. I have a family member with... Calista, we learn best from those who have traveled a similar road. Please re-read Jeannegibbs' comment.
I have a family member with major depressive disorder so I see the struggles of clinical depression. Add that to all of your caregiving challenges and it would sometimes seem like giving up is the answer. It is not. You will survive. If you are truly close to suicide do call the hotline in your community. These people are trained to help you. Please keep in touch.
Carol see more
I have a family member with major depressive disorder so I see the struggles of clinical depression. Add that to all of your caregiving challenges and it would sometimes seem like giving up is the answer. It is not. You will survive. If you are truly close to suicide do call the hotline in your community. These people are trained to help you. Please keep in touch.
Carol see more
Question
My mother (94) is diagnosed with dementia and cancer. She screams and fights with the caregiver. Is this norma...
I'd consider comfort care - likely hospice. I certainly wouldn't go for a lot of tests. Your mother may be suffering from pain that... I'd consider comfort care - likely hospice. I certainly wouldn't go for a lot of tests. Your mother may be suffering from pain that she can't express and the caregivers who are touching her make it worse (in her perception). Your dad is reacting normally to the fact that they seem to be hurting his wife. Hospice social workers and the chaplain could work with him to help him feel understand what is going on.
If you have a chance, please update us. You are going through a terrible time.
Carol see more
If you have a chance, please update us. You are going through a terrible time.
Carol see more
Question
Mom has lost all confidence being left alone again after living with my sister for 6 months. Any advice?
All of the moving around that she's done could be confusing for her. It seems as though assisted living may be the answer. She's... All of the moving around that she's done could be confusing for her. It seems as though assisted living may be the answer. She's afraid for a reason - the fall is, as was said, a red flag. With a familiar environment and people around she may regain some sense of confidence. If you can, try to visit so that you have a better feel for what is going on.
We'd love to have you update us when you can,
Carol see more
We'd love to have you update us when you can,
Carol see more
Question
Does someone with dementia know they have a problem?
Vicki123, your mom may not be aware if her illness at this stage even though she likely was as she began the decline. I don't see a... Vicki123, your mom may not be aware if her illness at this stage even though she likely was as she began the decline.
I don't see a reason to tell her. This seems to be the time when validation (going along with her) is the best route. Trying to tell her she has dementia and isn't thinking right will most likely only make her feel terrible when she really can't do anything about it.
Take care,
Carol see more
I don't see a reason to tell her. This seems to be the time when validation (going along with her) is the best route. Trying to tell her she has dementia and isn't thinking right will most likely only make her feel terrible when she really can't do anything about it.
Take care,
Carol see more
Question
Does someone with dementia know they have a problem?
Vetswife - about the brain supplements - it's hard to tell. There have been studies done at Oxford University in London that have found... Vetswife - about the brain supplements - it's hard to tell. There have been studies done at Oxford University in London that have found formulas containing B12, B6 and folic acid have helped reverse some symptoms of Alzheimer's disease. After two such studies this group of researchers are convinced that aging people should be on these supplements.
However, it's hard to know in what form these supplements were given to study participants. Not all supplements are absorbed well, and they may have used doses that non-scientists wouldn't feel comfortable using.
In the end, if you see no harm from what you've been giving him, you are probably doing okay. If the source is reputable and the amounts not huge, they are unlikely to cause harm. I'm assuming (maybe wrongly) that B12 is part of the mix and many elderly people are low in this vitamin because they don't absorb it well from food.
Take care,
Carol see more
However, it's hard to know in what form these supplements were given to study participants. Not all supplements are absorbed well, and they may have used doses that non-scientists wouldn't feel comfortable using.
In the end, if you see no harm from what you've been giving him, you are probably doing okay. If the source is reputable and the amounts not huge, they are unlikely to cause harm. I'm assuming (maybe wrongly) that B12 is part of the mix and many elderly people are low in this vitamin because they don't absorb it well from food.
Take care,
Carol see more
Question
What can I do when siblings accusing me of killing father?
As Jeannegibbs wisely said, people often feel that they have to blame someone else, especially if they feel guilty about their own... As Jeannegibbs wisely said, people often feel that they have to blame someone else, especially if they feel guilty about their own behavior. Your family likely feels guilty for not doing what they should have done, so they've blamed you for your father's death even though you were honoring his wishes.
I agree that your nourishing your anger will mainly harm you. Forgiving doesn't mean forgetting but try, even if you need to see a counselor, to air your rightful anger. In the end you'll benefit.
As far as your brother goes, you'll have to decide whether or not you can do what is requested. It seems that you could compromise. Say that you will look into arrangements but that you won't take on full care. This only holds if he can see that the family was unjust to you. If they continue to abuse you, then while you can still forgive, you may have to say that you've done all that you can.
Whatever you decide, I'd suggest counseling. This is a terrible situation to cope with on your own.
Take care of yourself - that matters!
Carol see more
I agree that your nourishing your anger will mainly harm you. Forgiving doesn't mean forgetting but try, even if you need to see a counselor, to air your rightful anger. In the end you'll benefit.
As far as your brother goes, you'll have to decide whether or not you can do what is requested. It seems that you could compromise. Say that you will look into arrangements but that you won't take on full care. This only holds if he can see that the family was unjust to you. If they continue to abuse you, then while you can still forgive, you may have to say that you've done all that you can.
Whatever you decide, I'd suggest counseling. This is a terrible situation to cope with on your own.
Take care of yourself - that matters!
Carol see more
Question
Husband (62) has dementia and started a new behavior. Do I continue to play along?
I'm so sorry, frostedflake. What you are going through seems nearly impossible to live with. It seems as though you've tried nearly... I'm so sorry, frostedflake. What you are going through seems nearly impossible to live with. It seems as though you've tried nearly everything that you can do including locking up precious items, giving your husband things that he can tear up and attempting creative outlets.
I am against over medicating, but all medications have side effects. If nothing changes you are likely to be the one in the hospital. I'd talk with the doctor again about the medications and see if small amounts might at least make your husband's symptoms less severe.
Your husband must be suffering psychologically, as well. Sometimes we have to take a physical risk in order to lessen mental pain. From what you've said, your husband may fall into this category. You may want to get a second opinion to evaluate the true risk vs. the possible benefit.
Update us when you can. We are all concerned for you.
Carol see more
I am against over medicating, but all medications have side effects. If nothing changes you are likely to be the one in the hospital. I'd talk with the doctor again about the medications and see if small amounts might at least make your husband's symptoms less severe.
Your husband must be suffering psychologically, as well. Sometimes we have to take a physical risk in order to lessen mental pain. From what you've said, your husband may fall into this category. You may want to get a second opinion to evaluate the true risk vs. the possible benefit.
Update us when you can. We are all concerned for you.
Carol see more
Question
How to get an elder parent to undergo a repeat psychological evaluation?
Wonderful! Any time tiresome but unnessary testing can be avoided it's helpful beyond measure to do so. Thanks for your input!
Carol
Carol
Question
After two weeks in the assisted living facility my mom is intensely unhappy. How much time should we let pass...
Willows and Linda, you are demonstrating the best of this forum - people do sometimes come across in a post differently than they intend,... Willows and Linda, you are demonstrating the best of this forum - people do sometimes come across in a post differently than they intend, or they are having a bad day. Apologizing and forgiving is a wonderful way to go about setting things right.
komentaightor and Jennegibbs, as you both said, no two situations are the same. A person who never uses outside care in any form is not necessarily a better or worse caregiver than someone who does. Needs differ. Abilities differ. Most importantly, personalities differ - and that includes the care receiver as well as the caregiver.
Comparison shouldn't have anything to do with this since we are often comparing apples and oranges as the old saying goes. Support for the caregiver and the care receiver are what is needed and what, in most cases, come through here loud and clear. I'm so proud to be part of this group!
Carol see more
komentaightor and Jennegibbs, as you both said, no two situations are the same. A person who never uses outside care in any form is not necessarily a better or worse caregiver than someone who does. Needs differ. Abilities differ. Most importantly, personalities differ - and that includes the care receiver as well as the caregiver.
Comparison shouldn't have anything to do with this since we are often comparing apples and oranges as the old saying goes. Support for the caregiver and the care receiver are what is needed and what, in most cases, come through here loud and clear. I'm so proud to be part of this group!
Carol see more
Question
How to get an elder parent to undergo a repeat psychological evaluation?
I would think that writing a letter to her primary doctor about the problem and then making an appointment to have, say, her blood pressure... I would think that writing a letter to her primary doctor about the problem and then making an appointment to have, say, her blood pressure checked or something like that to get her in, could do the trick. The doctor could ask simple enough questions to feel comfortable signing the forms, especially if he or she has the records from the psychiatrist.
Good caregivers can run into barriers that are frustrating - even infuriating. I hope that you can get this straightened out soon.
Carol see more
Good caregivers can run into barriers that are frustrating - even infuriating. I hope that you can get this straightened out soon.
Carol see more
Question
Any suggestions for an activity that will make my dad feel useful?
As has been mentioned, the higher functioning people often behave this way. That's how my mother was. She did crossword puzzles in her... As has been mentioned, the higher functioning people often behave this way. That's how my mother was. She did crossword puzzles in her room and watched public TV. She has slight memory issues but was in the nursing home for other reasons than dementia (repeated falls, etc.).
Many people do love to be on committees. Some facilities have (and all should have) committees for input from residents and families. Your dad would be a great leader for the residents. Also, as mentioned, as newsletter is good. My guess is that they will help him start one. Good luck!
Carol see more
Many people do love to be on committees. Some facilities have (and all should have) committees for input from residents and families. Your dad would be a great leader for the residents. Also, as mentioned, as newsletter is good. My guess is that they will help him start one. Good luck!
Carol see more
Question
Trying to divert husband's request to go home. Any thoughts?
The basic need for what is familiar and feels safe seems to be behind the need to "go home.". However, often rather than... The basic need for what is familiar and feels safe seems to be behind the need to "go home.". However, often rather than explaining to people why they live where they now live you can say, "You'll be home soon." Then try distraction. No matter what you do, it won't last. You'll go through this for some time, so pace yourself and leave graciously and with love when you feel that you can't do the whole routine any longer. This is a phase - longer than anyone would like - but it will pass.
Keep us up to date when you can,
Carol see more
Keep us up to date when you can,
Carol see more
Question
My mother has dementia and has developed a raspy cough and has trouble swallowing?
Grandaugher74, this, sadly, is normal. For someone in a late stage of dementia, UTIs are often part of the decline and yes, hallucinations... Grandaugher74, this, sadly, is normal. For someone in a late stage of dementia, UTIs are often part of the decline and yes, hallucinations may come with the territory. If he's not on hospice care, I'd call you local hospice right away. Stage 6 means that death will occur soon. It seems to me that keeping him comfortable should be the priority. With the help of the doctor, hospice will find a way help him.
We'd love to hear from you again when you feel up to it.
Carol see more
We'd love to hear from you again when you feel up to it.
Carol see more
Should you tell your loved one they have Alzheimer's?
Many people can not only grasp that they have the disease but they want a diagnosis - they want to put a name on what is happening. That is generally in the earlier stages. In the later stages the story is often different. Why keep telling a person that they have a disease when they can't remember the fact and they must repeat grieving.
So, yes, every case is different. However, stages enter into the decision. If the person becomes upset and agitated or goes into denial when told about the disease (repeatedly) then I'd say it's time to just be kind and move on.
This goes back to the saying that when you've known one person who has Alzheimer's you've known one person who has Alzheimer's. Flexibility is a requirement for caregivers - that's about the the only constant.
Take care, Carol see more