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 can I find out about my Dad's condition?
He should assign you his Power of Attorney for health care. A copy should be kept in his medical records but you should always keep a copy,... He should assign you his Power of Attorney for health care. A copy should be kept in his medical records but you should always keep a copy, as well. If he hasn't done that and needs your help now, have the clinic/hospital give him a HIPAA form that says it's okay for you to see his records. He can sign the form stating that they can give you the information. This has to be updated yearly but it would help right now if you need it. Good luck,
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Question
Can I force my father into an Alzheimer’s care home without his consent?
I'm so sorry! This truly is heartbreaking. Do what you have to do. As you say, there is no time for slow transitions. Please check back... I'm so sorry! This truly is heartbreaking. Do what you have to do. As you say, there is no time for slow transitions. Please check back with us when you can so we know how you're doing.
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How can I get access to her funds to pay expenses?
I am so sorry! This is a terrible predicament for you. cmagnum is likely right. Filing for guardianship may be your only route. You... I am so sorry! This is a terrible predicament for you.
cmagnum is likely right. Filing for guardianship may be your only route. You shouldn't be paying these bills yourself when your mom has the money. Talk with an elder care attorney for guidance. He or she may be able to suggest other routes for you to follow. If not, you'll have some legal guidance for filing for guardianship.
Please keep us posed on how you are doing,
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cmagnum is likely right. Filing for guardianship may be your only route. You shouldn't be paying these bills yourself when your mom has the money. Talk with an elder care attorney for guidance. He or she may be able to suggest other routes for you to follow. If not, you'll have some legal guidance for filing for guardianship.
Please keep us posed on how you are doing,
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Question
Does anyone feel as if there life has just been stripped away?
I think most of us have felt that way from time to time and nearly all of us are different people than before we started our caregiving... I think most of us have felt that way from time to time and nearly all of us are different people than before we started our caregiving journey. Part of that is a sense of loss. Our personalities change. Sometimes our hopeful, optimistic side takes such a beating that we feel that it's gone forever. However, we have gained, as well. Wisdom, compassion and strength of character are generally some of what we've discovered are part of our new selves.
That being said, we don't want to completely lose ourselves in our care receiver's illness. Being a caregiver is a 24/7 job, but it still shouldn't completely define us. I hope that you can figure out some way to get some time to yourself so you can - sorry if this sounds too "woo woo" - reconnect to your inner self. Meditate, journal and maybe more importantly, re-connect with a few things you enjoyed prior to caregiving. Realistically, you won't be able to do all that you did before. But perhaps, if you can find some type of help through in-home care, adult day care family assistance, you can find your old self as well as discover and appreciate your new self.
We're with you and we do understand. Please keep in touch so we know how you're doing.
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That being said, we don't want to completely lose ourselves in our care receiver's illness. Being a caregiver is a 24/7 job, but it still shouldn't completely define us. I hope that you can figure out some way to get some time to yourself so you can - sorry if this sounds too "woo woo" - reconnect to your inner self. Meditate, journal and maybe more importantly, re-connect with a few things you enjoyed prior to caregiving. Realistically, you won't be able to do all that you did before. But perhaps, if you can find some type of help through in-home care, adult day care family assistance, you can find your old self as well as discover and appreciate your new self.
We're with you and we do understand. Please keep in touch so we know how you're doing.
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Question
Has anyone used Marinol for late stage Alzheimer's?
Yes, Alzheimer's is one of the most cruel diseases around. It's no wonder that as many - if not more - seniors fear... Yes, Alzheimer's is one of the most cruel diseases around. It's no wonder that as many - if not more - seniors fear Alzheimer's more than cancer.
Our thoughts are with you,
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Our thoughts are with you,
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Question
Has anyone used Marinol for late stage Alzheimer's?
Garry, your idea of taking your dad to a geriatric psychiatrist is right on the mark. I hope you can get him in soon. Meanwhile, you could... Garry, your idea of taking your dad to a geriatric psychiatrist is right on the mark. I hope you can get him in soon. Meanwhile, you could ask his current doctor about Marinol. It won't hurt to ask and he or she might go along with the idea.
We in this community know the pain of watching loved ones decline. Please keep coming back so you can let us know how your dad - and you - are doing.
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We in this community know the pain of watching loved ones decline. Please keep coming back so you can let us know how your dad - and you - are doing.
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Question
How do I balance Mom's independence with my duties as caregiver/trustee?
I agree that either adult day care or assisted living could be good options. If your community has good AL facilities that could be the... I agree that either adult day care or assisted living could be good options.
If your community has good AL facilities that could be the best choice for the long run. Your social mother would have all kinds of options for activities and she could schedule time with her friends right there if she wanted. Also, many have "stores" for shopping where the spending can be better controlled without you looking like the bad guy.
Seriously, you have to look at what this arrangement is doing to you and your core family. Your whole life is spent juggling and cleaning up your mother's social and financial messes. This doesn't sound like a good long-term plan.
Does your mom know anyone in AL? If so, that would be a great "in." If the person enjoys the place (not everyone adjusts but most do), then take your mom to visit her friend and get a tour.
We're all wishing your the best blueskyhi. Please keep us posted as you go along.
Take care,
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If your community has good AL facilities that could be the best choice for the long run. Your social mother would have all kinds of options for activities and she could schedule time with her friends right there if she wanted. Also, many have "stores" for shopping where the spending can be better controlled without you looking like the bad guy.
Seriously, you have to look at what this arrangement is doing to you and your core family. Your whole life is spent juggling and cleaning up your mother's social and financial messes. This doesn't sound like a good long-term plan.
Does your mom know anyone in AL? If so, that would be a great "in." If the person enjoys the place (not everyone adjusts but most do), then take your mom to visit her friend and get a tour.
We're all wishing your the best blueskyhi. Please keep us posted as you go along.
Take care,
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Question
What questions should you ask a nursing home?
I've never been a smoker but I understand the patch. A elderly neighbor of mine (I became his primary caregiver) was a heavy drinker.... I've never been a smoker but I understand the patch. A elderly neighbor of mine (I became his primary caregiver) was a heavy drinker. When he broke his hip and was hospitalized there was zero understanding from the doctors about his withdrawal. It was awful and I was really angry.
This was a number of years back - I think they know more now. But smoking would be much the same. People need to be treated and weaned when possible.
Good point about the tightly wrapped sandwiches - Duh! Someone should figure that out.
About the smell - I know that people talk about nursing home smells and I'm sure it happens, but the only time there was a smell issue at the home where my parents were at the end of their lives (or any of our community NHs that I've visited) was/is if there had been an "accident" just prior to my arrival. They kept that place clean and under nearly all circumstances it smelled just fine. My point being that people should judge immediately until they know if the smell is constant or circumstantial.
Great observations, everyone!
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This was a number of years back - I think they know more now. But smoking would be much the same. People need to be treated and weaned when possible.
Good point about the tightly wrapped sandwiches - Duh! Someone should figure that out.
About the smell - I know that people talk about nursing home smells and I'm sure it happens, but the only time there was a smell issue at the home where my parents were at the end of their lives (or any of our community NHs that I've visited) was/is if there had been an "accident" just prior to my arrival. They kept that place clean and under nearly all circumstances it smelled just fine. My point being that people should judge immediately until they know if the smell is constant or circumstantial.
Great observations, everyone!
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Question
Did Hospice neglect to warn me about my Dad's condition?
A patient can qualify for hospice care if a doctor says that they will likely have 6 months or less to live. People tend to wait too long... A patient can qualify for hospice care if a doctor says that they will likely have 6 months or less to live. People tend to wait too long to call hospice because they misunderstand what hospice does.
Jeannegibbs was right. People can eat as long as they are capable and want to eat (generally, once organs begin shutting down, they are no longer hungry). They can take whatever medications help them feel more comfortable.
The idea behind hospice is death with dignity so as the body starts going through the death process they help with pain medications and other therapies to keep the person comfortable. But hospice care is much more than that when people enroll early.
Thanks to all of you for the fantastic feed back on this question as well as others.
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Jeannegibbs was right. People can eat as long as they are capable and want to eat (generally, once organs begin shutting down, they are no longer hungry). They can take whatever medications help them feel more comfortable.
The idea behind hospice is death with dignity so as the body starts going through the death process they help with pain medications and other therapies to keep the person comfortable. But hospice care is much more than that when people enroll early.
Thanks to all of you for the fantastic feed back on this question as well as others.
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Question
How can I find time to take care of myself without going out of my mind?
Good for you! You do need to get help. I spent many years with growing children (one with severe heath challenges of his own) and multiple... Good for you! You do need to get help. I spent many years with growing children (one with severe heath challenges of his own) and multiple elders who needed my help. It's not only exhausting - it can be damaging to more than just ourselves. There comes a time when outside help is the only answer. We can still be very, very involved with everyone but it takes more than one person to provide care for multiple ill people and give growing children some quality time, as well. Good luck in finding quality help.
Warm wishes,
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Warm wishes,
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Question
How can I find time to take care of myself without going out of my mind?
As others have said, we have to *make* time since we'll never *find* it. What I've told myself and believe to be true is that if I... As others have said, we have to *make* time since we'll never *find* it. What I've told myself and believe to be true is that if I go down my loved ones will have lost me and that could be the end of them. That is unfair to everyone.
While I've never been great at finding (or making) "me time," I have made the effort. Without doing so I'd have completely burned out long ago. For me, the answer has been getting up at 4 a.m. so I can meditate. That may not be the answer for many people but it's helped me. Others may consider that self-punishment but my point is that we must try to find something that works for us.
Please keep telling us how you are doing. We know how your are feeling as much as anyone else can and you'll get a variety of views from the community.
Blessings,
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While I've never been great at finding (or making) "me time," I have made the effort. Without doing so I'd have completely burned out long ago. For me, the answer has been getting up at 4 a.m. so I can meditate. That may not be the answer for many people but it's helped me. Others may consider that self-punishment but my point is that we must try to find something that works for us.
Please keep telling us how you are doing. We know how your are feeling as much as anyone else can and you'll get a variety of views from the community.
Blessings,
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Question
Did Hospice neglect to warn me about my Dad's condition?
I'm so sorry that you (and your dad) are having such a hard time. I agree that there must have been a glitch in the hospice system not... I'm so sorry that you (and your dad) are having such a hard time. I agree that there must have been a glitch in the hospice system not to have notified you that he was deteriorating so quickly. They should have called you immediately. Most likely, since the ALF was part of the care, someone at hospice thought that the ALF had notified you.
I have to agree with those who say that when we put someone on hospice care, the idea is to let them die naturally and not continue to try to make them better. There are, at this time, thoughts of changing that rule. However, as far as I know at this time, when someone goes on hospice they are to be kept comfortable but that is all. The understanding is that this person's life is ending and that he or she desires no more effort to try to cure something that, in the end, can't be cured.
Not all hospice organizations are as good as others since they are all, of course, made up of people (and administrators). Someone should have made it more clear to you that what you were signing up for with hospice was comfort care. It sounds as if using the hospital’s palliative care unit may have been a better choice in this case since treating the illness was still part of your expectations.
My heart goes out to you. All of these decisions are so very hard, and our generation has to make more of them because people don't die earlier from diseases that used to take them at a younger age. Whatever we decide – keep treating or let nature take them with as little pain as possible – we can feel we are making the wrong choice. That is only human. You are doing your best, so give yourself some comfort in knowing that.
Please keep us posted on how you are doing. We really want to know.
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I have to agree with those who say that when we put someone on hospice care, the idea is to let them die naturally and not continue to try to make them better. There are, at this time, thoughts of changing that rule. However, as far as I know at this time, when someone goes on hospice they are to be kept comfortable but that is all. The understanding is that this person's life is ending and that he or she desires no more effort to try to cure something that, in the end, can't be cured.
Not all hospice organizations are as good as others since they are all, of course, made up of people (and administrators). Someone should have made it more clear to you that what you were signing up for with hospice was comfort care. It sounds as if using the hospital’s palliative care unit may have been a better choice in this case since treating the illness was still part of your expectations.
My heart goes out to you. All of these decisions are so very hard, and our generation has to make more of them because people don't die earlier from diseases that used to take them at a younger age. Whatever we decide – keep treating or let nature take them with as little pain as possible – we can feel we are making the wrong choice. That is only human. You are doing your best, so give yourself some comfort in knowing that.
Please keep us posted on how you are doing. We really want to know.
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Question
Question
May NH retain personal needs allowance?
Yes, more information could be helpful. Most nursing homes ask for a small amount kept in reserve for haircuts and other small needs... Yes, more information could be helpful. Most nursing homes ask for a small amount kept in reserve for haircuts and other small needs although that money belongs to the resident and if the resident dies or leaves the home that money should be refunded.
I hope this answers your question.
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I hope this answers your question.
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Question
Should I tell my Mom in advance that she is going to assisted living?
Brinoz, you aren't being "gutless." You are grieving. Let your husband and well educated daughter do the moving part.... Brinoz, you aren't being "gutless." You are grieving. Let your husband and well educated daughter do the moving part. They'll get it done kindly and well. Yes, your mother will resist but this is necessary for her and for you.
If this facility is a good as it sounds, the people there will handle this well. With the help of her familiar son-in-law and granddaughter, your mother will be okay. Be prepared for the "I want to go home" scenario when you visit. If (when) that happens, smile and lovingly distract her but don't act as though you feel guilty. That won't help her or you. This is the right thing to do under the circumstances. She may learn to enjoy herself or she may not but if she is receiving good care and she has loving people to visit her it will be okay.
You'll feel guilty no matter what anyone else tells you but remember what your doctor said. You need to do this. Just think how awful it would be if your health collapsed and your mother understood that caring for her was what caused the problems. She'd be devastated. Please try to see the side the others are seeing. Both you and your mother will, in the end, be fine with the move.
Let us know how you're doing once the move has been accomplished.
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If this facility is a good as it sounds, the people there will handle this well. With the help of her familiar son-in-law and granddaughter, your mother will be okay. Be prepared for the "I want to go home" scenario when you visit. If (when) that happens, smile and lovingly distract her but don't act as though you feel guilty. That won't help her or you. This is the right thing to do under the circumstances. She may learn to enjoy herself or she may not but if she is receiving good care and she has loving people to visit her it will be okay.
You'll feel guilty no matter what anyone else tells you but remember what your doctor said. You need to do this. Just think how awful it would be if your health collapsed and your mother understood that caring for her was what caused the problems. She'd be devastated. Please try to see the side the others are seeing. Both you and your mother will, in the end, be fine with the move.
Let us know how you're doing once the move has been accomplished.
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Question
My Mom has dementia and lives with my sister who works full time and my sister refuses to get a caregiver refu...
Hi Jwinters, As Babalou suggested, there isn't a lot of information here but there are things to consider. Did the doctor suggest a... Hi Jwinters,
As Babalou suggested, there isn't a lot of information here but there are things to consider.
Did the doctor suggest a shingles vaccine but your sister declined because she didn't want to pay? Most insurance pays for that for people over 60 now (some for younger people). So, it's possible that the doctor advised against it because of age factors. Still, if your sister truly is not giving your mother the care she needs, then an intervention of some type may be needed.
If you can't offer to help or your help is rejected, then you could see if a social worker from the Alzheimer's Association could visit. That would feel less threatening than Adult Protective Services. Naturally, if you feel that there is real and immediate danger for your mother, then APS should look into it, but I'm trying to see if there's are more graceful way to see if your mother is getting proper care.
It's possible that if a social worker suggests some in-home care for your mother while your sister is gone, your sister may consider such a move. Family dynamics can make things very difficult so often a suggestion by a third party is easier to accept.
I'm glad that you are worried about your mother's welfare. That's excellent. Do try to involve some type of trusted third party (one who has no ties to either you or your sister). Maybe a compromise can be worked out.
Please let us know how it's going as you work this through.
Carol see more
As Babalou suggested, there isn't a lot of information here but there are things to consider.
Did the doctor suggest a shingles vaccine but your sister declined because she didn't want to pay? Most insurance pays for that for people over 60 now (some for younger people). So, it's possible that the doctor advised against it because of age factors. Still, if your sister truly is not giving your mother the care she needs, then an intervention of some type may be needed.
If you can't offer to help or your help is rejected, then you could see if a social worker from the Alzheimer's Association could visit. That would feel less threatening than Adult Protective Services. Naturally, if you feel that there is real and immediate danger for your mother, then APS should look into it, but I'm trying to see if there's are more graceful way to see if your mother is getting proper care.
It's possible that if a social worker suggests some in-home care for your mother while your sister is gone, your sister may consider such a move. Family dynamics can make things very difficult so often a suggestion by a third party is easier to accept.
I'm glad that you are worried about your mother's welfare. That's excellent. Do try to involve some type of trusted third party (one who has no ties to either you or your sister). Maybe a compromise can be worked out.
Please let us know how it's going as you work this through.
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Question
When a senior can no longer care for mentally ill adult child. Any advice?
LadyBee,This is one of the worst things a parent can face - how to make sure that a mentally and/or chronically ill adult child is cared... LadyBee,This is one of the worst things a parent can face - how to make sure that a mentally and/or chronically ill adult child is cared for after we are gone. Our system isn't set up well for many people in these circumstances - many who have high IQs - and it's heartbreaking.
As everyone said, they may have more information for you if you provide more detail. My heart goes out to you,
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As everyone said, they may have more information for you if you provide more detail. My heart goes out to you,
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Question
Do hospitals have rules about nurses putting the moves on senior patients?
This doesn't sound good. As Miette said, if they'd met elsewhere the situation would be different, but under these conditions the... This doesn't sound good. As Miette said, if they'd met elsewhere the situation would be different, but under these conditions the nurse should not be seeing him socially. This sounds highly inappropriate. I'd check into it.
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Question
What questions should you ask a nursing home?
It's unfortunate that some areas of the country have consistently good nursing homes and others not so good (or even terrible).... It's unfortunate that some areas of the country have consistently good nursing homes and others not so good (or even terrible). However, doing your homework is still a good idea.
The staff matters much more than the surroundings. I always watch to see if the interaction between staff and residents seems genuine. Taking into consideration issues that can't be changed (such as paranoia with dementia) how does the staff handle difficult residents? How do residents look when a staff member approaches? Is there a level of trust and comfort overall?
In the end much of this is about the "vibes" that you get when you visit. As has been mentioned, look for official reports such as the one that Medicare puts out and try to talk to other family members if you can.
Beautiful surroundings are nice but people are what matter. You're smart to start asking questions early. Good luck.
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The staff matters much more than the surroundings. I always watch to see if the interaction between staff and residents seems genuine. Taking into consideration issues that can't be changed (such as paranoia with dementia) how does the staff handle difficult residents? How do residents look when a staff member approaches? Is there a level of trust and comfort overall?
In the end much of this is about the "vibes" that you get when you visit. As has been mentioned, look for official reports such as the one that Medicare puts out and try to talk to other family members if you can.
Beautiful surroundings are nice but people are what matter. You're smart to start asking questions early. Good luck.
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What are your New Year's resolutions/plans?
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