Jim's recent experiences with hospital and ER visits spurred me to blog about what to expect. This week, the blog is about being an educator, something about which the average LBD caregiver is usually well aware.
Expect to be an educator about your loved one's disorder. Do not assume that ER or even hospital personnel knows about LBD or about its issues with drug sensitivities. This is especially critical when your loved one is there with something unrelated to LBD.
• Bring short, easy to read articles about LBD that discuss its most common symptoms, such as drug sensitivities, fluctuating cognition, early hallucinations, and active dreams and how it differs from Alzheimer's. The LBDA website offers many such articles.
• Bring a LBDA Medical Alert Wallet Card and ask that a copy of it be added to your loved one's chart. Click here to order or download one.
• Bring a list of how LBD affects your loved one, including specific symptoms, most common irritants and the way she responds to them--acting-out, withdrawal, etc. Ask that this also be included in her chart.
Expect to be a full partner in your loved one's care.
• List any drug your loved one has reacted poorly to as an allergy. This should prevent them from being used.
• Provide a list of drugs that have been shown to be risky for people with your loved one's disorder. (i.e., any anticholinergic drugs for LBDers. You can find lists here.)
• Insist that no drugs be given to your loved one without you being informed first. With a power of attorney from your loved one, you have a right to refuse drugs you believe to be harmful. (Even without one, it is worth a try if you are a spouse--but get the POA! and be prepared.)
• Ask to see the chart if you are concerned. Some nurses are very helpful about letting you view these.
• Ask to see any test reports. Ask that they be printed out so you can have a copy, or that they be emailed to you. If you get them while you are there, they may be free but if you ask for them later, you will likely have to pay a fee.
• Be assertive and persistent, but always respectful. Assume the staff is doing their best to care for your loved one--but don't accept brushoffs.
Expect the staff to be busy but interested. Most staff are interested in anything that will advance their pool of knowledge.
• The more interesting you can make your "spiel" the easier it will be to get people to pay attention. Share your passion with them!
• Be friendly and willing to talk but not pushy. (The honey vs. vinegar thing.)
• Don't be a know-it-all, but do show that you have done your homework and know what you are talking about.
• Have your literature available so you can use it to support what you say...and to hand out for staff to read when they have more time.
Expect that the staff has to--and should--abide by hospital rules and doctor's orders. What you teach may not change the way they do things now. This has to come from higher up. But the more you educate, the higher up it will go! But what you can do is make sure your loved one gets the best, most well informed care possible. And that is your immediate goal anyway.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
Friday, May 29, 2015
Friday, May 22, 2015
Dementia: Legal & Financial Considerations
This week our guest blog writer is David Watt, of Laker Legal Solicitors. (Italicized inserts are mine.)
When you or a loved one is diagnosed with dementia it can feel like a frightening situation. The challenges ahead can seem daunting but you're not alone. There is a lot of help out there for you to get the support you need. There are a number of government programs that can assist you in caring for someone with dementia or if you have been diagnosed yourself.
There are a number of legal considerations to take into account with dementia. It is important to plan ahead as soon as possible in order to best adhere to your loved one's wishes. Talking with them about what they want is vital for finding out their wishes for future situations such as designating a person to make decisions on their behalf when they are unable to do so. Doing this early can help prevent difficult behavior in later stages. You will also need to discuss the long-term care wishes and planning for finances and property.(Even when a person can no longer remember having this discussion, their subconscious will, and they will be less resistant to whatever they agreed to earlier.)
The ability to make rational decisions and understand one's action is referred to as "legal capacity." If a person suffering from dementia has the ability to understand important legal documents then they have legal capacity. Different documents have different requirements for legal capacity. A lawyer will be able to help you determine if your loved one has the legal capacity to sign a document. A doctor can also assist in determining a person’s mental ability.
If there are existing legal documents that were signed before your loved one was diagnosed with dementia they may not remember signing them. It is a good idea to review them with another person to make sure that they are up to date.
When meeting with lawyer, it is helpful to get an attorney that specializes in elder care. Some key points you will want to discuss with your lawyer are: Decision making for the person with dementia, managing the person’s assets and finances, managing a person’s personal care, and long-term care services.
You will need to bring a number of documents to the lawyer to help them give you the most relevant advice. This includes:
• Copies of deeds to real estate
• Tax returns
• Health insurance or benefits booklets
• admission agreements to healthcare facilities
• A detailed list of assets
• Wills, trusts, powers of attorney
• A list of the names and addresses of people involved, family and caregivers.
People 65 or older are usually entitled to Medicare, especially if they are receiving Social Security retirement benefits. If you have a young onset diagnosis of dementia and have been receiving Social Security disability benefits for at least 24 months you are also entitled to Medicare. It provides monetary support with inpatient hospital care, outpatient prescription drugs, some medical items and some doctor's fees. This program also provides you with some home care under certain conditions. This includes rehabilitation therapy and skilled nursing care. It's worth checking up regularly what your Medicare can give you as there may be changes that affect you. In addition to Medicare there is Medigap insurance which supplements Medicare coverage and, as the name suggests, fills in the gaps that Medicare does not cover including paying for coinsurance.
(Medicare plans vary greatly by state. Many insurance companies offer plans based on the Medicare required basics but what they add can be bewilderingly different and so can their cost. What they offer also changes yearly. No Medicare plans cover long term care. Medigap plans can be expensive. Consider consulting a Senior Adviser, or a person specializing in these plans before choosing.)
To qualify for SSDI, Social Security Disability Insurance, a person must meet the criteria for disability out lined by the Social Security Administration. This often means that they need to prove that the person with dementia cannot work, they will remain in the condition for more than a year or that it is ultimately expected to result in death. For those younger than 65 to qualify they will need to meet other criteria. Usually they are fast-tracked to a favourable decision so that the person can start receiving benefits in a shorter amount of time.
(Expect your application to be denied the first time you apply. Using legal guidance so that you get the wording just right will lower the chances of this but still, most people who apply for SSDI must apply more than once before they are accepted.)
Bottom line: Speak to a solicitor or lawyer to ensure that the person living with dementia is given all the assistance they need.
(Yes!!! And I add, so that the you, the caregiver, get all of the legal power you need to care for your loved one.)
Living With Dementia, the Practical, Legal & Financial Considerations. A worthwhile article with more good information. Laker Legal is based in the UK, but most of their information is applicable in the US as well. (Do check this out!
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia
When you or a loved one is diagnosed with dementia it can feel like a frightening situation. The challenges ahead can seem daunting but you're not alone. There is a lot of help out there for you to get the support you need. There are a number of government programs that can assist you in caring for someone with dementia or if you have been diagnosed yourself.
There are a number of legal considerations to take into account with dementia. It is important to plan ahead as soon as possible in order to best adhere to your loved one's wishes. Talking with them about what they want is vital for finding out their wishes for future situations such as designating a person to make decisions on their behalf when they are unable to do so. Doing this early can help prevent difficult behavior in later stages. You will also need to discuss the long-term care wishes and planning for finances and property.(Even when a person can no longer remember having this discussion, their subconscious will, and they will be less resistant to whatever they agreed to earlier.)
The ability to make rational decisions and understand one's action is referred to as "legal capacity." If a person suffering from dementia has the ability to understand important legal documents then they have legal capacity. Different documents have different requirements for legal capacity. A lawyer will be able to help you determine if your loved one has the legal capacity to sign a document. A doctor can also assist in determining a person’s mental ability.
If there are existing legal documents that were signed before your loved one was diagnosed with dementia they may not remember signing them. It is a good idea to review them with another person to make sure that they are up to date.
When meeting with lawyer, it is helpful to get an attorney that specializes in elder care. Some key points you will want to discuss with your lawyer are: Decision making for the person with dementia, managing the person’s assets and finances, managing a person’s personal care, and long-term care services.
You will need to bring a number of documents to the lawyer to help them give you the most relevant advice. This includes:
• Copies of deeds to real estate
• Tax returns
• Health insurance or benefits booklets
• admission agreements to healthcare facilities
• A detailed list of assets
• Wills, trusts, powers of attorney
• A list of the names and addresses of people involved, family and caregivers.
People 65 or older are usually entitled to Medicare, especially if they are receiving Social Security retirement benefits. If you have a young onset diagnosis of dementia and have been receiving Social Security disability benefits for at least 24 months you are also entitled to Medicare. It provides monetary support with inpatient hospital care, outpatient prescription drugs, some medical items and some doctor's fees. This program also provides you with some home care under certain conditions. This includes rehabilitation therapy and skilled nursing care. It's worth checking up regularly what your Medicare can give you as there may be changes that affect you. In addition to Medicare there is Medigap insurance which supplements Medicare coverage and, as the name suggests, fills in the gaps that Medicare does not cover including paying for coinsurance.
(Medicare plans vary greatly by state. Many insurance companies offer plans based on the Medicare required basics but what they add can be bewilderingly different and so can their cost. What they offer also changes yearly. No Medicare plans cover long term care. Medigap plans can be expensive. Consider consulting a Senior Adviser, or a person specializing in these plans before choosing.)
To qualify for SSDI, Social Security Disability Insurance, a person must meet the criteria for disability out lined by the Social Security Administration. This often means that they need to prove that the person with dementia cannot work, they will remain in the condition for more than a year or that it is ultimately expected to result in death. For those younger than 65 to qualify they will need to meet other criteria. Usually they are fast-tracked to a favourable decision so that the person can start receiving benefits in a shorter amount of time.
(Expect your application to be denied the first time you apply. Using legal guidance so that you get the wording just right will lower the chances of this but still, most people who apply for SSDI must apply more than once before they are accepted.)
Bottom line: Speak to a solicitor or lawyer to ensure that the person living with dementia is given all the assistance they need.
(Yes!!! And I add, so that the you, the caregiver, get all of the legal power you need to care for your loved one.)
Living With Dementia, the Practical, Legal & Financial Considerations. A worthwhile article with more good information. Laker Legal is based in the UK, but most of their information is applicable in the US as well. (Do check this out!
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia
Friday, May 15, 2015
ER and Hospital Expectations: Loved One
"There is simply not enough staffing in a hospital to calm, help and comfort a LBD patient. And sometimes they don't know what LBD is or the devastating, stressful effects." Comment by Arlene on 5/5/15. This weeks blog is in response to her very apt statements. How can we, as caregivers, help emergency room and general hospital staff calm, help and comfort our loved ones? Here are some ideas to get you started. Feel free to add comments with your own suggestions or concerns.
Expect it to be cold. Hospitals, especially ERs are cold places.
• Make sure your loved one is dressed warmly and ask for warm blankets if he's still cold.
Expect your loved one to be uncomfortable. Waiting will be more uncomfortable, and possibly painful, than boring for your loved one.
• Bring a pillow (or ask for one) and help him to readjust for more comfort.
• Bring some coconut oil laced with one of the soothing essential oils and give your loved one a hand massage. If the oils aren't allowed, used hospital-provided lotion. It won't be as soothing, but it will still be helpful.
• Use touch, lots of gentle touch. Holding his hand, smoothing his blanket over his shoulders, kissing his forehead all tend to be comforting.
• If your loved one is comfortable enough, he will likely zone out. DO NOT relieve your boredom (and your worry) by fussing over her.
Expect your loved one to be impatient. People who are sick don't do patience well. Add any cognitive involvement, as with LBD or Parkinson's with dementia, and it is even more difficult.
• Bring snacks, or buy them in the hospital (depending on your loved one's diet or hospital orders).
• Use music. Bring an ipod, or mp3 player with calming music.
• Use distractions, depending on your loved one's abilities and interests. A book, a cell phone game, a deck of cards, or even a favorite stuffed toy. I bring Jim's laptop so that when he is feeling up to it, he can play card games and check his email.
• Ask about internet connections. Hospitals usually have free patient wifi. This can be both helpful and entertaining for both of you.
Expect your loved one to be dependent. You are their stability, their connection with a time when they felt healthy. Even so, you still need to take occasional respite periods...going to the cafeteria, etc. Do not give these up!
• Choose times when your loved one is either asleep or otherwise involved (as with trips to x-ray, etc.) for your times away from his side.
• Set a return time--and keep to it if you possibly can.
• Stay connected by cell phones. Just knowing he can call while you are gone will decrease his agitation.
Expect the staff to really care. People don't usually enter the health care profession to make money. They do it because they like helping people. However, hospitals aren't staffed to offer the individual care you provide at home.
• Always treat the staff with respect. They may not know a lot about LBD specifically, but they are still professionals, doing their job to the best of their ability. (More about educating staff in a future blog.)
• Look for things to compliment. Your recognition of staff's hard work, or their caring attentions goes a long way. You know, honey instead of vinegar.
Expect to ask questions. There are usually things you can do for your loved one instead of waiting until a staff person gets around to it, but this varies with the hospital.
• Ask where the hot blankets are. Sometimes they will let you help yourself to these. You can keep your loved one warmer and save the staff many steps.
• If admitted, ask where the nourishments are kept. They will usually allow you to get items for yourself or your loved one from this area. Coffee, tea, ice cream, crackers and the like are usually available.
• Ask how to how to roll the bed up and down, and how to take the brakes off and move it. (The staff may frown on the latter, however.)
Expect to be an advocate. In times of illness and stress, the ability to think and communicate plummets.
• View behaviors as communication: irritation, restlessness, or frowning may be signs of discomfort or pain.
• Try to identify the problem and fix it. This may mean doing something yourself like asking for another blanket or passing information about something like pain on to the staff.
Expect your loved one to still feel "rocky" when you get home. An ER and possibly hospital experience is usually very stress-related. This decreases everyone's ability to function--including the caregivers. Give yourselves some slack! You are both doing the best you can. And don't forget the first caregiver requirement: patience! It is also the last one. Now if I can just remember all of my own good advice....
Soon: Hospital Visits: Being an Educator. That was supposed to be in this blog but it just got too long! However, next week we may have a guest blog on the financial aspects of caregiving.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia
http://managingcognitiveissues.com
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
Expect it to be cold. Hospitals, especially ERs are cold places.
• Make sure your loved one is dressed warmly and ask for warm blankets if he's still cold.
Expect your loved one to be uncomfortable. Waiting will be more uncomfortable, and possibly painful, than boring for your loved one.
• Bring a pillow (or ask for one) and help him to readjust for more comfort.
• Bring some coconut oil laced with one of the soothing essential oils and give your loved one a hand massage. If the oils aren't allowed, used hospital-provided lotion. It won't be as soothing, but it will still be helpful.
• Use touch, lots of gentle touch. Holding his hand, smoothing his blanket over his shoulders, kissing his forehead all tend to be comforting.
• If your loved one is comfortable enough, he will likely zone out. DO NOT relieve your boredom (and your worry) by fussing over her.
Expect your loved one to be impatient. People who are sick don't do patience well. Add any cognitive involvement, as with LBD or Parkinson's with dementia, and it is even more difficult.
• Bring snacks, or buy them in the hospital (depending on your loved one's diet or hospital orders).
• Use music. Bring an ipod, or mp3 player with calming music.
• Use distractions, depending on your loved one's abilities and interests. A book, a cell phone game, a deck of cards, or even a favorite stuffed toy. I bring Jim's laptop so that when he is feeling up to it, he can play card games and check his email.
• Ask about internet connections. Hospitals usually have free patient wifi. This can be both helpful and entertaining for both of you.
Expect your loved one to be dependent. You are their stability, their connection with a time when they felt healthy. Even so, you still need to take occasional respite periods...going to the cafeteria, etc. Do not give these up!
• Choose times when your loved one is either asleep or otherwise involved (as with trips to x-ray, etc.) for your times away from his side.
• Set a return time--and keep to it if you possibly can.
• Stay connected by cell phones. Just knowing he can call while you are gone will decrease his agitation.
Expect the staff to really care. People don't usually enter the health care profession to make money. They do it because they like helping people. However, hospitals aren't staffed to offer the individual care you provide at home.
• Always treat the staff with respect. They may not know a lot about LBD specifically, but they are still professionals, doing their job to the best of their ability. (More about educating staff in a future blog.)
• Look for things to compliment. Your recognition of staff's hard work, or their caring attentions goes a long way. You know, honey instead of vinegar.
Expect to ask questions. There are usually things you can do for your loved one instead of waiting until a staff person gets around to it, but this varies with the hospital.
• Ask where the hot blankets are. Sometimes they will let you help yourself to these. You can keep your loved one warmer and save the staff many steps.
• If admitted, ask where the nourishments are kept. They will usually allow you to get items for yourself or your loved one from this area. Coffee, tea, ice cream, crackers and the like are usually available.
• Ask how to how to roll the bed up and down, and how to take the brakes off and move it. (The staff may frown on the latter, however.)
Expect to be an advocate. In times of illness and stress, the ability to think and communicate plummets.
• View behaviors as communication: irritation, restlessness, or frowning may be signs of discomfort or pain.
• Try to identify the problem and fix it. This may mean doing something yourself like asking for another blanket or passing information about something like pain on to the staff.
Expect your loved one to still feel "rocky" when you get home. An ER and possibly hospital experience is usually very stress-related. This decreases everyone's ability to function--including the caregivers. Give yourselves some slack! You are both doing the best you can. And don't forget the first caregiver requirement: patience! It is also the last one. Now if I can just remember all of my own good advice....
Soon: Hospital Visits: Being an Educator. That was supposed to be in this blog but it just got too long! However, next week we may have a guest blog on the financial aspects of caregiving.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia
http://managingcognitiveissues.com
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
Friday, May 8, 2015
ER Expectations: Caregiver
For Jim, another visit to a hospital emergency room (ER), another twist to his disorder, another day of both of us feeling helpless and frightened as his body jerks him around (figuratively, that is). For me, another day of being a caregiver, of putting his needs before my own, and before ours as a couple. For both of us, more lessons to learn. Readers will be glad to hear that Jim is home again, "feeling fine" (i.e., stop asking!) and not planning another ER visit.
When I sat in the ER this time, I began making a list of the things a caregiver and their loved one should expect and things they need when visiting the ER. That list got very long and so I had to cut it in two. This week is mainly about caregiver expectations and needs. Next week will be about helping your loved one have a better ER experience.
Expect to wait. Expect to wait for a bed in the ER. Expect to wait after you ring the bell for service once you are in a room. Expect to wait for tests, and then for the results of those tests. Expect to be bored...waiting is usually boring.
When I sat in the ER this time, I began making a list of the things a caregiver and their loved one should expect and things they need when visiting the ER. That list got very long and so I had to cut it in two. This week is mainly about caregiver expectations and needs. Next week will be about helping your loved one have a better ER experience.
Expect to wait. Expect to wait for a bed in the ER. Expect to wait after you ring the bell for service once you are in a room. Expect to wait for tests, and then for the results of those tests. Expect to be bored...waiting is usually boring.
- Patience is at the top of the list. This can be difficult to manage. You understandably want your loved one who is ill and likely in pain, made comfortable NOW but "now" probably isn't going to happen in a normally crowded ER. If the unit is short staffed, it may take a long time (hours!) for them to get around to you. However, impatience only makes your loved one feel worse, may alienate staff and definitely adds to your own stress.
- Bring busy work...a book, crocheting, and the like. Also bring money for trips to places like the cafeteria.
- Ask how long each wait is likely to be. There are two reasons for this.
- It is human nature to feel less stressed when we know when something (in this case, the waiting period) will end--and anything that decreases stress is worth doing!
- You need to take breaks, but you definitely want to be there when needed. Often the staff can give you a broad idea of how long a wait will be. For instance, they told me that one of Jim's tests would take 45 minutes to an hour. That gave me time to go to the cafeteria and eat a relaxed meal.
- Take advantage of long periods of waiting to take breaks once your loved one has been admitted to the ER and has a bed, and later if he is admitted to the hospital. (This is called "self care.") Get completely out of the area. Go to the cafeteria. Check out the hospital shop. Hospitals usually have computers available for visitors to use; find one and play a game or check your email.
- Hospitals hallways are a good place for "mall-walking.
- If the weather is good, go outside and walk around.
- Come dressed in warm clothes and bring a jacket. Don't forget socks if you live in a place like Phoenix where it might be 100 degrees outside.
- If you are still cold, ask for warmed blankets. These are available for your loved one but staff will be glad to bring you one--or more, too.
- Practice deep breathing and other stress reduction techniques. Consciously relax as much as you can.
- Look for positives--and talk about them when you see them. A nurse who is specially attentive and caring. A doctor who actually knows about your loved one's illness. Another caregiver who shares a few pleasant words with you. Just waiting is stressful and so celebrate each step towards the end of a wait, and towards the end of the entire visit.
- Choose not to worry. Worry is what we do when we can't find anything constructive to do...and all it does is add stress. Do everything you can--such as taking your loved one into the ER where he can get help--and then consciously let of of the worrying. This may not be easy, but it is as important a self-care step as taking breaks.
For information about Lewy body disorders, read our books:
Saturday, May 2, 2015
On Being a Caregiver to a Hospital Patient
Last week I reported that Jim was having surgery. That went fine. Then he was readmitted to the hospital on Tuesday and got out today. The stress from the surgery caused his Crohns to flare up. He's fine now...has more energy than before this surgery thing started.
We learned some lessons. I hope there won't be a next time, but if there is, I hope we can remember them.
Remember that each person is a whole body, with each issue impacting on the other. With chronic issues such as Crohns--or PD or LBD--plan ahead to limit these clashes. For instance, if Jim had increased his Crohns drugs prior to surgery, he might not have had to experience a flare-up of Crohns. For someone with a Lewy body disorder, a similar preventative measure might mean adding a small dose anti-anxiety drug a few days prior to a known period of stress, such as a move into residential care or a visit from distant relatives (see 4-3-15 blog).
When a crisis occurs, don't let the urgency blind you to the power you still have to change the situation. When Jim started hurting, we forgot all about the fact that the first thing they always do for a Crohns flare-up is "nothing"...nothing to eat or drink, that is. All we could think of was getting him to the hospital, where he'd have professional help. And so Jim sat in the ER for eight hours waiting to be seen, another two lying in an ER bed waiting to be admitted to the hospital and then a whole day afterwards with nothing to eat or drink. That was exactly what he needed but, "I could have done that at home and been a lot more comfortable," he said later. Have you had experiences like this as a Lewy body disorder caregiver. Times when you let the crisis take over and it made things worse instead of better?
Be willing to speak up, ask questions and demand answers. Most of you have been in situations where your loved one was treated for something other than Lewy symptoms, and perhaps given drugs that were either not helpful or even harmful. Jim was admitted to the hospital with a diagnosis of "infection," instead of Crohns. Well, they look a lot alike on an x-ray and, "In the ER, the tests tell the story," a nurse told us. But patient history means a lot too, and we caregivers are the ones with that in spades! Naturally, I was making myself heard on the subject. I didn't like to see Jim getting antibiotics that he probably didn't need! Finally, after the blood tests came back negative for infection, they stopped the antibiotics. I don't know if they would have then if I hadn't made a fuss--they might have left it, "just in case." When Jim was finally given something for Crohns, he improved immediately.
Please understand that we greatly appreciate the generally wonderful care that Jim had during his stay. The staff were all very kind and helpful. I simply wanted to pass on something that we as caregivers seem to have to learn over and over...we actually know more than we think we do--but we let the fear that a crisis generates cover that up and we end up looking for help--often in places that know less than we do about our loved ones and their specific issues!
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia
We learned some lessons. I hope there won't be a next time, but if there is, I hope we can remember them.
Remember that each person is a whole body, with each issue impacting on the other. With chronic issues such as Crohns--or PD or LBD--plan ahead to limit these clashes. For instance, if Jim had increased his Crohns drugs prior to surgery, he might not have had to experience a flare-up of Crohns. For someone with a Lewy body disorder, a similar preventative measure might mean adding a small dose anti-anxiety drug a few days prior to a known period of stress, such as a move into residential care or a visit from distant relatives (see 4-3-15 blog).
When a crisis occurs, don't let the urgency blind you to the power you still have to change the situation. When Jim started hurting, we forgot all about the fact that the first thing they always do for a Crohns flare-up is "nothing"...nothing to eat or drink, that is. All we could think of was getting him to the hospital, where he'd have professional help. And so Jim sat in the ER for eight hours waiting to be seen, another two lying in an ER bed waiting to be admitted to the hospital and then a whole day afterwards with nothing to eat or drink. That was exactly what he needed but, "I could have done that at home and been a lot more comfortable," he said later. Have you had experiences like this as a Lewy body disorder caregiver. Times when you let the crisis take over and it made things worse instead of better?
Be willing to speak up, ask questions and demand answers. Most of you have been in situations where your loved one was treated for something other than Lewy symptoms, and perhaps given drugs that were either not helpful or even harmful. Jim was admitted to the hospital with a diagnosis of "infection," instead of Crohns. Well, they look a lot alike on an x-ray and, "In the ER, the tests tell the story," a nurse told us. But patient history means a lot too, and we caregivers are the ones with that in spades! Naturally, I was making myself heard on the subject. I didn't like to see Jim getting antibiotics that he probably didn't need! Finally, after the blood tests came back negative for infection, they stopped the antibiotics. I don't know if they would have then if I hadn't made a fuss--they might have left it, "just in case." When Jim was finally given something for Crohns, he improved immediately.
Please understand that we greatly appreciate the generally wonderful care that Jim had during his stay. The staff were all very kind and helpful. I simply wanted to pass on something that we as caregivers seem to have to learn over and over...we actually know more than we think we do--but we let the fear that a crisis generates cover that up and we end up looking for help--often in places that know less than we do about our loved ones and their specific issues!
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia
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