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.

Find more about caregiving in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.

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.

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

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.

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.

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.