- Visit about the same time each day. Within this structure, occasionally come an hour early or stay an hour late, or even pop in for a little while at an odd time. Your loved one will do better with a set routine but staff does better when they don’t know when you may show up.
- Develop new routines, with activities that both of you enjoy. Your job has changed but it hasn’t gotten any less important. The LTC has become responsible for meeting your loved one physical needs. Your job now is to help your loved one meet emotional, social and intellectual needs. You will find you have more time and energy to do this now too. You can take the time to work a puzzle or read or look at photos or reminisce instead of feeling overwhelmed by the physical chores.
- Develop rapport with staff. Be more generous with your complements than you are with your complaints. (Remember the 3 positives for every negative rule—it applies to staff too!) Bring gifts. Bribes are often as effective with staff as they are with your loved one!
- Look for the positives. Why did you choose this facility in the first place? Was it close to home? Did you like the staff? Does it feel comfortable? Do these things still apply? What else can you identify that you like about it? Don’t forget to include things like you are getting more rest, more “me time,” and that your back isn’t hurting from all the lifting.
- Identify the negatives. Yes, they will be there. Routines that you’ve developed won’t work in LTC. And the LTC will have their own routines that may feel uncomfortable and foreign to you and your loved one. Be willing to speak up and make suggestions or requests when necessary.
- Adapt. The negatives most likely aren’t going to go away. And so, how can you adapt? This doesn’t mean giving in. It means finding a way so that both your needs and the LTC’s needs are met. For instance, staff turnover is a big complaint. Even when the staff in the facility stays the same, they usually rotate a lot. “I just get someone trained about what Dad likes and they are gone and I have to start all over.” Try writing up a list of things that need to be done and how your loved one wants them done. Then share it with the charge nurse and make sure each new staff is told about it. Most rooms have a dry erase board and you can leave a note about your list on it. Or even write the most important things right there.
- Let go. Part of adapting is accepting that you aren’t in charge of everything anymore. One of the few perks of caregiving is being in control. It is seldom something you wanted, but when you have to give it up, it can be awfully difficult to do. Take time to consciously evaluate when you want step in and make changes in your loved one’s care. If it is something that really needs changing, go ahead. If it is just because “that’s not the way we do it,” reconsider. Relax and give this new way a chance. While familiarity is important to your loved one, he also needs peace. When you are upset, so is he.
Saturday, May 17, 2014
Surviving in Long Term Care
You’ve done your homework. You searched out the very best long term care facility you could find for you loved one. And now he’s there and you aren’t happy. You still think it was the best one you could find. The staff is for the most part caring and thoughtful, if overworked. They know their job. But still, it’s not the same. They do things on their schedule and in their way, not yours. Even in a great facility, there will be problems. It’s never going to be like it was at home. Here are some ways to adapt and make this time more enjoyable.
Saturday, May 10, 2014
Kinds of Long Term Care
About a year ago this blog discussed way to make your home Lewy friendly (4-5 and 12, 2013). However, even with an accessible home, you will eventually need help. Caregiving, and especially dementia caregiving, is NOT a job that can be done safely alone. More recent blogs have discussed the red flags that warn of the need for help of some kind (4-25-14). If this is an subject you avoid, you aren’t alone. The 4-14-14 blog discussed common resistances that keep caregivers from asking for help.
For most caregivers, the time will eventually come when they will have to consider placement in a long term care facility. The 9-15-12 blog lays out the main reasons for this, adds some warnings and makes some suggestions about choices. Read this blog sooner than later. This week, the blog is about types of long term facilities available and how to choose the right one.
Residential facilities come in several levels of care:
Independent living. This is like having your own apartment, except that it is within a facility that can quickly provide assistance if needed. These apartments are usually in a multi-level of care facility. People often chose this option so that they can migrate to higher levels of care without leaving the friends they’ve made in the facility. Unless you choose to move here as a couple, your loved one would seldom qualify for independent living.
Assisted living. This is the level of care that many LB loved ones would fit into. The units are usually a small suite, with a mini-kitchen, a private bathroom and a bed-livingroom. Although assistance is readily available as needed, a person must be safe to leave alone and able to cope without fulltime help. Wheelchair-bound people will probably qualify, but only if they are still fairly functional. Some facilities encourage spouses to in with the loved one—often at little extra cost. Then, the couple must be able to cope without full-time help.
Memory care. The level of care may be similar to assisted living, but this is usually a locked unit, due to the wandering that many people with dementia tend to do. Loved ones with LBD may not need to be in a locked unit because wandering is not a common LBD symptom. (However, LBD and AD are often mixed and then, all bets are off.) Memory care units may also be equipped to care for people with more advanced dementia, where heavier nursing care is needed.
Skilled nursing care. The level of care is high, essentially round the clock nursing. A loved one who has become bed-ridden would qualify for this level of nursing, as would one who had become so helpless that they could not assist in transferring.
Adult Family Homes. These are usually smaller facilities and each is different. They are often family run with few staff changes, and much less activity than occurs in a larger facility. They may or may not have patients requiring several levels of treatment. These are all things you would need to explore when researching such homes. However, LB loved ones tend to do well in these smaller facilities that have fewer changes and less stimuli—if the home is well run and the staff are caring.
Future blogs will discuss more about when to place and how to make it work once a person has been placed.
For more information, read A Caregiver's Guide to Lewy Body Dementia, available on LBDtools.com
For most caregivers, the time will eventually come when they will have to consider placement in a long term care facility. The 9-15-12 blog lays out the main reasons for this, adds some warnings and makes some suggestions about choices. Read this blog sooner than later. This week, the blog is about types of long term facilities available and how to choose the right one.
Residential facilities come in several levels of care:
Independent living. This is like having your own apartment, except that it is within a facility that can quickly provide assistance if needed. These apartments are usually in a multi-level of care facility. People often chose this option so that they can migrate to higher levels of care without leaving the friends they’ve made in the facility. Unless you choose to move here as a couple, your loved one would seldom qualify for independent living.
Assisted living. This is the level of care that many LB loved ones would fit into. The units are usually a small suite, with a mini-kitchen, a private bathroom and a bed-livingroom. Although assistance is readily available as needed, a person must be safe to leave alone and able to cope without fulltime help. Wheelchair-bound people will probably qualify, but only if they are still fairly functional. Some facilities encourage spouses to in with the loved one—often at little extra cost. Then, the couple must be able to cope without full-time help.
Memory care. The level of care may be similar to assisted living, but this is usually a locked unit, due to the wandering that many people with dementia tend to do. Loved ones with LBD may not need to be in a locked unit because wandering is not a common LBD symptom. (However, LBD and AD are often mixed and then, all bets are off.) Memory care units may also be equipped to care for people with more advanced dementia, where heavier nursing care is needed.
Skilled nursing care. The level of care is high, essentially round the clock nursing. A loved one who has become bed-ridden would qualify for this level of nursing, as would one who had become so helpless that they could not assist in transferring.
Adult Family Homes. These are usually smaller facilities and each is different. They are often family run with few staff changes, and much less activity than occurs in a larger facility. They may or may not have patients requiring several levels of treatment. These are all things you would need to explore when researching such homes. However, LB loved ones tend to do well in these smaller facilities that have fewer changes and less stimuli—if the home is well run and the staff are caring.
Future blogs will discuss more about when to place and how to make it work once a person has been placed.
For more information, read A Caregiver's Guide to Lewy Body Dementia, available on LBDtools.com
Friday, May 2, 2014
Caregiver Help in the Home
Former blogs have discussed the need for help with caregiving—and the caregiver’s resistance to using said help. Caregivers almost universally resist placing their loved one in a residential facility. When they do, it is usually after they’ve exhausted all other options. And after they have also exhausted their own physical resources to the place where they are truly unable to do the physical care any more. Getting the caregiving help you need doesn’t have to mean residential placement. There are other options:
Family and friends. All you generally need at first is a few hours free to go run errands. Often there will be neighbors, family or friends who can sit with your loved one while you are gone. As the need increases, these sources become less useful because they may not have the ability, knowledge or even the inclination to do everything that needs to be done—like helping with toileting or transferring.
Adult day care. These programs can provide social, medical and emotional support for your loved one and some respite for you. They are often a good choice for a caregiver who is still working at an outside job. Many provide transportation as well. It may take a while for acceptance to take place but caregivers often report that their charges like going once it becomes a routine. It often helps to go together at first and then leave your loved one there alone for longer and longer times. Use the checklist on page 176 of the Caregiver’s Guide to Lewy Body Dementia (the Guide) when selecting a program.
In home help. Agencies such as Home Instead and Visiting Angels provide bonded and trained home health care technicians who will come to your home. You can usually set up a schedule that works best for you and your loved one. There are also many independent home health caregivers who do a very good job. However, do be sure to check their references carefully.
Edgar is getting almost too much for me to lift by myself and I know I need help. But he sleeps most of the time. I just hate the idea that except for a half an hour now and then, I will be paying the aide to sit around doing nothing. -- Amy
Some aides will also do light housework during their patient’s down time. This would address Amy’s issue and even help her to catch up on work that often gets put off because of other caregiving duties. Eventually, the time will come when you need round the clock help. This can be quite expensive and caregivers often opt for residential treatment at this time.
Hospice care. Most people don’t call hospice in until their loved one is only weeks or even days from dying. This is a shame because hospice provides wonderful in-home services, including a weekly nurse visit and an aide who helps with bathing several times a week. It is free to anyone who is on Medicare but a person does have to meet certain requirements to qualify. One of those requirements is that a physician must document that the person’s condition is such that they may live only six more months. However, this is a very subjective decision. People have been known to live for years on hospice! Pages 216-222 in the Guide discusses hospice eligibility requirements and much more.
Palliative care. Many hospice organizations offer palliative care (comfort care) which is essentially the same care as that provided for hospice patients for a usually reasonable fee. This is worth checking out. It can often be a good way to start using in-home care.
Future blogs will discuss residential placement.
Read more about caregiving in A Caregiver’s Guide to Lewy Body Dementia, available on LBDtools.com.
Family and friends. All you generally need at first is a few hours free to go run errands. Often there will be neighbors, family or friends who can sit with your loved one while you are gone. As the need increases, these sources become less useful because they may not have the ability, knowledge or even the inclination to do everything that needs to be done—like helping with toileting or transferring.
Adult day care. These programs can provide social, medical and emotional support for your loved one and some respite for you. They are often a good choice for a caregiver who is still working at an outside job. Many provide transportation as well. It may take a while for acceptance to take place but caregivers often report that their charges like going once it becomes a routine. It often helps to go together at first and then leave your loved one there alone for longer and longer times. Use the checklist on page 176 of the Caregiver’s Guide to Lewy Body Dementia (the Guide) when selecting a program.
In home help. Agencies such as Home Instead and Visiting Angels provide bonded and trained home health care technicians who will come to your home. You can usually set up a schedule that works best for you and your loved one. There are also many independent home health caregivers who do a very good job. However, do be sure to check their references carefully.
Edgar is getting almost too much for me to lift by myself and I know I need help. But he sleeps most of the time. I just hate the idea that except for a half an hour now and then, I will be paying the aide to sit around doing nothing. -- Amy
Some aides will also do light housework during their patient’s down time. This would address Amy’s issue and even help her to catch up on work that often gets put off because of other caregiving duties. Eventually, the time will come when you need round the clock help. This can be quite expensive and caregivers often opt for residential treatment at this time.
Hospice care. Most people don’t call hospice in until their loved one is only weeks or even days from dying. This is a shame because hospice provides wonderful in-home services, including a weekly nurse visit and an aide who helps with bathing several times a week. It is free to anyone who is on Medicare but a person does have to meet certain requirements to qualify. One of those requirements is that a physician must document that the person’s condition is such that they may live only six more months. However, this is a very subjective decision. People have been known to live for years on hospice! Pages 216-222 in the Guide discusses hospice eligibility requirements and much more.
Palliative care. Many hospice organizations offer palliative care (comfort care) which is essentially the same care as that provided for hospice patients for a usually reasonable fee. This is worth checking out. It can often be a good way to start using in-home care.
Future blogs will discuss residential placement.
Read more about caregiving in A Caregiver’s Guide to Lewy Body Dementia, available on LBDtools.com.
Friday, April 25, 2014
The Red Flags for Needing Help with Caregiving
Any Lewy body disorder is progressive and the progression is usually very slow. So slow that a caregiver doesn’t really notice how difficult the job is becoming. It helps to have a list of “red flags” and check them once in a while. This blog will only list the red flags and some of your options. Later blogs will discuss the options more fully.
1. You have become uncomfortable leaving your loved one alone. This means that you will seldom be able to leave home unless you take him with you, find someone to stay with him or find a place to leave him. Any of these can be difficult at times. If you take him with, this may be cumbersome, depending on his physical abilities. And it also means you have no time alone. Finding someone to sit with him can also be difficult—and of course, it means asking for help. Finding a place to leave him usually means adult day care, which can be a good solution.
2. Your loved one has become so ill or difficult to manage that it is no longer safe for you to do it by yourself. This means you will need to find adequate in-home help or place him in a compatible long term care facility. In-home care is usually adequate at first but eventually you will likely have to consider either round-the-clock in-home care or residential care. The residential care solution can be made more palatable for couples if the spouse enters at the same time. This need not cost much more, by the way.
3. Your home is no longer accessible for your loved one’s needs. This often happens when a person becomes wheelchair bound. This means that you will need to consider remodeling, moving to a more accessible home or placement in a long term care facility. If you wait until you need it, the disruptions of remodeling may be too stressful for your loved one. Moving is often a viable option although leaving a beloved home can also be stressful for both of you. As above, the residential placement may be less stressful for couples who enter together.
4. Your health becomes so poor that you can no longer provide safe care. This is actually the most common reason why people enter long term care. This will be less likely to happen if the caregiver makes her physical AND emotional health a priority from the start. However, this issue often gets ignored. If you soldier on until you literally can’t do the job, residential care may be the only answer. Caught early on, adding in-home help can often be enough at first. As your loved one’s needs become greater. Eventually, either round-the-clock help or residential care will likely be required.
The bottom line is that if any of these issues are present, you need to re-evaluate your ability to handle your caregiving responsibilities without help. Resistance to this, even strong resistance, is understandable. No one is going to do this job as well as you do it, or even just the way you do it--among other issues--see the April 11 blog. However, if you don’t get the help you need when it is needed, you will be forced to get even more later. And then, you may be too ill to not be able to provide very much caregiving support at all. If you do get help, you will find that you can actually give your loved one better care because you are not so focused on your own issues such as pain, depression or illnesses.
1. You have become uncomfortable leaving your loved one alone. This means that you will seldom be able to leave home unless you take him with you, find someone to stay with him or find a place to leave him. Any of these can be difficult at times. If you take him with, this may be cumbersome, depending on his physical abilities. And it also means you have no time alone. Finding someone to sit with him can also be difficult—and of course, it means asking for help. Finding a place to leave him usually means adult day care, which can be a good solution.
2. Your loved one has become so ill or difficult to manage that it is no longer safe for you to do it by yourself. This means you will need to find adequate in-home help or place him in a compatible long term care facility. In-home care is usually adequate at first but eventually you will likely have to consider either round-the-clock in-home care or residential care. The residential care solution can be made more palatable for couples if the spouse enters at the same time. This need not cost much more, by the way.
3. Your home is no longer accessible for your loved one’s needs. This often happens when a person becomes wheelchair bound. This means that you will need to consider remodeling, moving to a more accessible home or placement in a long term care facility. If you wait until you need it, the disruptions of remodeling may be too stressful for your loved one. Moving is often a viable option although leaving a beloved home can also be stressful for both of you. As above, the residential placement may be less stressful for couples who enter together.
4. Your health becomes so poor that you can no longer provide safe care. This is actually the most common reason why people enter long term care. This will be less likely to happen if the caregiver makes her physical AND emotional health a priority from the start. However, this issue often gets ignored. If you soldier on until you literally can’t do the job, residential care may be the only answer. Caught early on, adding in-home help can often be enough at first. As your loved one’s needs become greater. Eventually, either round-the-clock help or residential care will likely be required.
The bottom line is that if any of these issues are present, you need to re-evaluate your ability to handle your caregiving responsibilities without help. Resistance to this, even strong resistance, is understandable. No one is going to do this job as well as you do it, or even just the way you do it--among other issues--see the April 11 blog. However, if you don’t get the help you need when it is needed, you will be forced to get even more later. And then, you may be too ill to not be able to provide very much caregiving support at all. If you do get help, you will find that you can actually give your loved one better care because you are not so focused on your own issues such as pain, depression or illnesses.
Find more about caregiving in The Caregiver's Guide to Lewy
Body Dementia available on LBDtools.com in the LBD Book Corner.
Friday, April 18, 2014
Kirk Hall
In March we spoke at a Parkinson’s conference in Colorado where we met several fascinating people. One of the most interesting was Kirk Hall. Kirk is a man who has refused to let Parkinson's, and now MCI, stop him from enjoying life and continuing to be productive. He is also the author of two children’s books about Parkinson’s, both of which are listed in our website’s book store, The LBD Book Corner. He just sent us a new book release for his latest book, Window of Opportunity. In this book, Kirk offers all of us an insider’s view of how it feels to get such a life changing diagnosis as MCI and continue to live a fulfilling life. His books, first for children and now for adults, are examples of this. Another is his participation in a webinar sponsored by the LBDA in June. Kirk has asked that we post information about the book and the webinar and we are honored to oblige.
A webinar to be hosted by the Lewy Body Dementia Association (LB DA) is planned for Wednesday, June 4, 2014 at 2 pm Eastern on Webex. The goal of the webinar is to give Lewy body dementia (LBD) patients, Parkinson's patients (PWPs) and their caregivers the opportunity to hear from Alexander Dreier, who has been diagnosed with LBD, and his wife, Olivia, about what is like for them and how they deal with this diagnosis. Kirk and Linda Hall will also participate as representatives of the "PD world" and share how they are dealing with Kirk’s mild cognitive impairment (MCI) diagnosis, as MCI is often a precursor to Lewy body dementia (LBD), the most common form of Parkinson’s dementia. There will be an opportunity to ask questions.
Registration and access information for this webinar will be available on the LBDA website in May.
Window of Opportunity is the story of one person’s journey through the initial signs of cognitive impairment associated with Parkinson’s disease and the uncertainty of a future that includes a significant probability of dementia. Kirk Hall, only 58 at the time he began noticing small signs of mild cognitive impairment, tells his story with directness, candor, sensitivity and humor. He describes the long and challenging visits to doctors seeking answers to his disturbing symptoms and the confusion caused by conflicting opinions about the nature and progression of his disease. His journal notes allow him to describe in vivid detail his slowly coming to grips with disability and the increasing lifestyle changes required to offset progressive cognitive difficulties. He shares the internal struggle, anxiety and stress that uncertainty causes, not only for himself but for his family as well.
The book is a tribute to someone who is able to maintain a positive orientation despite the threat of something as devastatingly frightening as dementia. It is also a journey of discovery as Kirk transitions into the healing aspects of giving back to the Parkinson’s community through helping others and sharing his story. Indeed the reader will take away important insights into the importance of keeping a patient journal, patient self-advocacy, and shared decision-making. And, perhaps most powerful of all, are the insights into how dealing with the potential for a terminal diagnosis can turn into a “window of opportunity” to contribute in a meaningful way to the body of knowledge about a disease and to help others on a similar path.
To order: Find the paperback and Kindle versions of this book in The LBD Book Corner. You can also order the paperback from Pygmy Books, page 2 and the ebook (all formats) from Smashwords.
Dementia Webinar
A webinar to be hosted by the Lewy Body Dementia Association (LB DA) is planned for Wednesday, June 4, 2014 at 2 pm Eastern on Webex. The goal of the webinar is to give Lewy body dementia (LBD) patients, Parkinson's patients (PWPs) and their caregivers the opportunity to hear from Alexander Dreier, who has been diagnosed with LBD, and his wife, Olivia, about what is like for them and how they deal with this diagnosis. Kirk and Linda Hall will also participate as representatives of the "PD world" and share how they are dealing with Kirk’s mild cognitive impairment (MCI) diagnosis, as MCI is often a precursor to Lewy body dementia (LBD), the most common form of Parkinson’s dementia. There will be an opportunity to ask questions.Registration and access information for this webinar will be available on the LBDA website in May.
NEW BOOK RELEASE
The book is a tribute to someone who is able to maintain a positive orientation despite the threat of something as devastatingly frightening as dementia. It is also a journey of discovery as Kirk transitions into the healing aspects of giving back to the Parkinson’s community through helping others and sharing his story. Indeed the reader will take away important insights into the importance of keeping a patient journal, patient self-advocacy, and shared decision-making. And, perhaps most powerful of all, are the insights into how dealing with the potential for a terminal diagnosis can turn into a “window of opportunity” to contribute in a meaningful way to the body of knowledge about a disease and to help others on a similar path.
To order: Find the paperback and Kindle versions of this book in The LBD Book Corner. You can also order the paperback from Pygmy Books, page 2 and the ebook (all formats) from Smashwords.
Monday, April 14, 2014
Do You Need More Help?
We meet wonderful, dedicated people at caregiver support groups. We always learn something. Maybe it is how to move a person easier, or where the best care for a particular ailment is in our area. But often it is that caregivers are ferociously determined to give their loved ones the best treatment possible. And that they want to do this at home. And that they prefer to do it alone. We hear of their struggles—the falls, and the difficulty getting a loved one into and out of a chair; the difficulty getting him to the doctor or for regular tests. We hear of combativeness and see the bruises. We hear the stories about the caregivers bad backs, and shoulders, and hearts and other illnesses.
Especially, we hear over and over that no caregiver wants to place their loved one in a long term care facility. NONE of those places are good enough. NONE of them will give him the care the caregiver has been giving him. NONE of them will take the time for his various needs. Or if there is one that will do all of this, they haven’t found it yet, or it is too expensive, or…. As for in-home help, caregivers worry about having a stranger in their home. Who can be trusted? Or the loved one doesn't respond well to hired caregivers--strangers who don't know his special needs and quirks.
The bottom line is that placing this person that they feel totally responsible for into someone else’s hands is terrifying. The what ifs make it an awfully difficult task—often an impossible task. What if they give him a medication he shouldn’t have? What if he needs help and they don’t respond quickly? What if they can’t understand what he wants? What if ……? The list goes on and on in their head. “No, I can’t do it,” the caregiver thinks. “I can carry on alone for a while longer.”
But can she? Over and over, the statistics show that all caregivers are highly susceptible to debilitating illnesses, illnesses that will eventually take away their ability to care for their loved one. Even worse, an elderly caregiver is 60% more likely to die than a non-caregiver of the same age. SIXTY PERCENT! Over half. Then, the loved one is likely to go into a long term care facility because there are no other choices. And it will be without the all important caregiver’s support.
We’ve come to believe that the issue is much more than that of finding adequate, caring help, or a Lewy-friendly long term care facility, or even finances. We don’t discount those problems. However, many caregivers can attest that good, trustworthy help and facilities are out there if you look for them. Finances can be a major roadblock, but assistance is there also. There has to be something more, like the emotional attachment to the job, and of course to the loved one.
There is a lot of emotion invested in caregiving. There’s that terror of handing over a loved one to someone else is one I mentioned earlier, as well as many other strong feelings that surround the wish for a loved one’s well-being.
But we believe there’s more—and it often has more to do with the caregiver than the loved one. To ask for help may seem like failing, or like letting a loved one down, or even like letting oneself down. The loved one becomes a caregiver’s most valuable, most protected possession, and the job becomes her identity. How can she give this up, or even share it?
Years ago, I lived and worked in another state and visited my elderly parents a few times a year. My mother was already in a nursing home when my stepfather became ill and had to join her. My widowed sister, who was their primary caregiver, kept this a secret from me. Later, she said she was afraid I'd try to take over her job. I couldn't understand that then. Why would I, who could only visit occasionally, want to take over a job my sister was doing so well? The caregivers in the support groups we've visited have helped me to understand. My sister had been a caregiver for years, first of her husband, then of our mother and finally, of our stepfather. What I saw then as irrational behavior was fueled by fears she probably didn't even recognize--including the fear of losing her identity as a caregiver.
For a spouse, is sharing the intimacies of caregiving like sharing a marriage? Does it feel wrong, somehow to expose her loved one’s vulnerabilities to someone else? True, she believes that no one else can do as good a job as she can. She’s probably right—as long as she can do it. But what would happen if she were wrong? What if someone else could do a better job? Then, what is she? Chopped liver?
These are just ideas thrown out to explore. Do you relate with any of them? Or do you find yourself adamantly resisting any of these suggestions? If you do, think again—that may be the one that fits when you take the time to be really honest with yourself. Future blogs will be about how to know when it is time to get help—and what kinds are available.
Find more about LBD caregiving in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.
Especially, we hear over and over that no caregiver wants to place their loved one in a long term care facility. NONE of those places are good enough. NONE of them will give him the care the caregiver has been giving him. NONE of them will take the time for his various needs. Or if there is one that will do all of this, they haven’t found it yet, or it is too expensive, or…. As for in-home help, caregivers worry about having a stranger in their home. Who can be trusted? Or the loved one doesn't respond well to hired caregivers--strangers who don't know his special needs and quirks.
The bottom line is that placing this person that they feel totally responsible for into someone else’s hands is terrifying. The what ifs make it an awfully difficult task—often an impossible task. What if they give him a medication he shouldn’t have? What if he needs help and they don’t respond quickly? What if they can’t understand what he wants? What if ……? The list goes on and on in their head. “No, I can’t do it,” the caregiver thinks. “I can carry on alone for a while longer.”
But can she? Over and over, the statistics show that all caregivers are highly susceptible to debilitating illnesses, illnesses that will eventually take away their ability to care for their loved one. Even worse, an elderly caregiver is 60% more likely to die than a non-caregiver of the same age. SIXTY PERCENT! Over half. Then, the loved one is likely to go into a long term care facility because there are no other choices. And it will be without the all important caregiver’s support.
We’ve come to believe that the issue is much more than that of finding adequate, caring help, or a Lewy-friendly long term care facility, or even finances. We don’t discount those problems. However, many caregivers can attest that good, trustworthy help and facilities are out there if you look for them. Finances can be a major roadblock, but assistance is there also. There has to be something more, like the emotional attachment to the job, and of course to the loved one.
There is a lot of emotion invested in caregiving. There’s that terror of handing over a loved one to someone else is one I mentioned earlier, as well as many other strong feelings that surround the wish for a loved one’s well-being.
But we believe there’s more—and it often has more to do with the caregiver than the loved one. To ask for help may seem like failing, or like letting a loved one down, or even like letting oneself down. The loved one becomes a caregiver’s most valuable, most protected possession, and the job becomes her identity. How can she give this up, or even share it?
Years ago, I lived and worked in another state and visited my elderly parents a few times a year. My mother was already in a nursing home when my stepfather became ill and had to join her. My widowed sister, who was their primary caregiver, kept this a secret from me. Later, she said she was afraid I'd try to take over her job. I couldn't understand that then. Why would I, who could only visit occasionally, want to take over a job my sister was doing so well? The caregivers in the support groups we've visited have helped me to understand. My sister had been a caregiver for years, first of her husband, then of our mother and finally, of our stepfather. What I saw then as irrational behavior was fueled by fears she probably didn't even recognize--including the fear of losing her identity as a caregiver.
For a spouse, is sharing the intimacies of caregiving like sharing a marriage? Does it feel wrong, somehow to expose her loved one’s vulnerabilities to someone else? True, she believes that no one else can do as good a job as she can. She’s probably right—as long as she can do it. But what would happen if she were wrong? What if someone else could do a better job? Then, what is she? Chopped liver?
These are just ideas thrown out to explore. Do you relate with any of them? Or do you find yourself adamantly resisting any of these suggestions? If you do, think again—that may be the one that fits when you take the time to be really honest with yourself. Future blogs will be about how to know when it is time to get help—and what kinds are available.
Find more about LBD caregiving in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.
Friday, April 4, 2014
The Brain Support Network Makes Brain Donations Easier
One way you can help the cause for LBD is to donate your loved one's brain to research. Post-mortem brain tissue analysis provides the only sure diagnosis of most neurological diseases, including LBD, at this time. Knowing exactly what a loved one had may help families know more about their own genetic expectations. Since comparing past symptoms to autopsy results helps to develop better diagnostic protocols, donating families can feel they are helping others—that their loved one has not died in vain. It is also the way we will finally get a cure. For brain research to go forward, researchers need an ongoing supply of brains to study.
Yet, families often find the donation process difficult and confusing. It happens at a time when families are already stressed. They are grieving. The death of a loved one often brings drastic changes for the caregiver. There is usually a deadline after which the brain would not be useful.
The Brain Support Network (BSN) doesn’t remove those stresses but it makes the donation process it self easier. It provides complete, detailed brain donation arrangements tailored to the specific person and diagnosis, and support the entire way. The BSN is unique. No other organization provides this extent of services. That is, BSN staff have the knowledge and expertise to find and set up the right arrangements for each family—and then walk the family through the whole process. Each family and each situation is different.
Since 2007, the BSN has helped over 170 families donate the brains of loved ones. The founder, Robin Riddle, did all they work until recently when the group became a non-profit and hired two part-time staff. Robin says that each brain donation takes about 15-25 hours of staff time and costs the BSN about $500. The group does not charge for their services but they do let families know that a donation will let them help the next family.
Donating a brain isn’t something you do at the last minute. The BSN requests that you contact them before death is imminent, although they will do their best to help even then. Contact them when a family member has received multiple, conflicting diagnoses, has been placed on hospice, or has been recently hospitalized with pneumonia or a major fall. Families who like the idea of helping others with brain donations that support research can contact the BSN at any time as well.
To find out more about this wonderful organization or to make a donation--or both, check out their website or download their brochure.
Yet, families often find the donation process difficult and confusing. It happens at a time when families are already stressed. They are grieving. The death of a loved one often brings drastic changes for the caregiver. There is usually a deadline after which the brain would not be useful.
The Brain Support Network (BSN) doesn’t remove those stresses but it makes the donation process it self easier. It provides complete, detailed brain donation arrangements tailored to the specific person and diagnosis, and support the entire way. The BSN is unique. No other organization provides this extent of services. That is, BSN staff have the knowledge and expertise to find and set up the right arrangements for each family—and then walk the family through the whole process. Each family and each situation is different.
Since 2007, the BSN has helped over 170 families donate the brains of loved ones. The founder, Robin Riddle, did all they work until recently when the group became a non-profit and hired two part-time staff. Robin says that each brain donation takes about 15-25 hours of staff time and costs the BSN about $500. The group does not charge for their services but they do let families know that a donation will let them help the next family.
Donating a brain isn’t something you do at the last minute. The BSN requests that you contact them before death is imminent, although they will do their best to help even then. Contact them when a family member has received multiple, conflicting diagnoses, has been placed on hospice, or has been recently hospitalized with pneumonia or a major fall. Families who like the idea of helping others with brain donations that support research can contact the BSN at any time as well.
To find out more about this wonderful organization or to make a donation--or both, check out their website or download their brochure.
Subscribe to:
Posts (Atom)