Being Prepared

The last two blogs have been about why you should consider hospice before your loved one’s very last days and how to choose one. This blog is about preparation in general. LBD is a very erratic disorder and every person living with LBD (PlwLBD)  expresses it differently. However there are some things that you can expect:

• There will be medications, some for the LBD and some to deal with those physical problems.
• Once present, Lewy body disorders WILL progress. There will likely be some times of apparent improvement, and it may take many years, but over time, the PlwLBD will become weaker and less competent.
• The time will come when a single caregiver will not be able to cope safely. The PlwLBD will become too helpless or the caregiver’s health will fail. More than half the time the latter is the case.
• LBD is a terminal disease. No one recovers from it, and the last year or so is usually physically and emotionally difficult for both the PlwLBD and their caregiver.
• Because of the many physical problems that accompany LBD, there is a very good chance that a PlwLBD will go to the emergency room, probably several times, and possible be hospitalized as well.

None of these are pleasant. They aren’t what any caregiver wants to happen. However, you can make them much easier to deal with if you plan ahead for them. Many people resist. They view such planning as giving up, or even as “making it happen.” It is neither. It is true caring, and smoothing out the path ahead.

Start with your pharmacist. It is easy to assume that all pharmacists are the same, but like doctors, they aren’t. Ask around and find one who is familiar with LBD and how it reacts with various drugs. Once you find one that you can trust, use this person for all of the PlwLBD’s medications. This may mean that you will have to drive out of your way, but it is worth it. Always ask this person about any over-the-counter drugs the PlwLBD takes as well.

In the same way, search home care staff and residential facilities well before you need them. Be aware that if you choose to go the home care route altogether, you need to plan on 24 hour staffing. Although you can often get by with just a few hours a week to start, this will change. Eventually, a family caregiver should not be providing more than a third of the care, preferably less. There are too many other things that the family caregiver has to do, besides the physical care.

One caregiver reported that when they did a pre-search of residential facilities for their loved one, the residential staff was surprised. They are used to people needing their services right away. Don’t let such an attitude stop you from searching out the best care you can find for the price you can afford. (Residential care is usually less expensive than full time home care, BTW, but it is still expensive.) However, if you do your searching before the need arises, you can be much more objective. You are also less likely to choose something less than you want just because it is available. There are several good sources of information to use when searching out residential placement, including both of our books.

Don’t neglect financial and legal issues. Find an elder care attorney and get all the legal papers drawn up while the PlwLBD can still make their wishes known. Again there are many resources available to guide you in this, including our books.

In most communities, there are several, or even many, hospice services. Again, search out the right one out well before you need it. Make sure it is one that understands the drug and behavioral issues involved as well as the usual dementia-related problems. And remember, the PlwLBD does not have to be within a week or a few days of dying. Take advantage of this service as early as you can.

Face these decisions as tasks that need to be done for the future. Once they are done, and plans are made, you can forget about them until they are needed. Then at “crunch time” when you are already stressed, it will be easier to make informed, caring choices.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy BodyDementia

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.

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