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.

Things I Wish I'd Done

Things I thought I knew about him but without him there to verify it, wasn’t really sure. Dates and papers I discovered too late that I’d need—and had to guess or do without. Some cost me money. Some just cost me peace of mind.

It is the same for a caregiver of anyone with dementia. Ask early on. Get it in writing. Make lists and store them in safe places. Safe and KNOWN places. Tell another family member. Share a copy with your attorney. Before my sister died, we’d done much of this and then I stored it all in a safe place. I didn’t tell anyone else where it was. After all, I knew I’d be there when it was needed. However, in the stress of her dying, the place was so safe that I forgot where it was. Luckily, she had also shared a copy of her will with her attorney. Then when we cleaned out her home, we found her papers right where I’d put them—in the back of her freezer. (That’s actually a good place to store papers by the way. It keeps them safe in case of fire and it isn’t a place thieves tend to look.)

While Lewy is still mild and your loved one is able to participate, make up your wills, and get durable powers of attorney for both financial and health care and a living will. Make lists of all legal papers for things such as deeds, insurances, military discharge, birth, marriage and divorce and show where each is kept. List all your financial holdings, including real estate, stocks and bonds, and bank accounts. Add a list of all of your digital information: the ID and passwords for bank accounts and other online websites you will want to know later. This last has become more and more important. For instance, if you don’t have a password to your loved one’s Facebook page, you will not be able to access any of the information on it nor will you be able to delete it. Once you have all this information, do not forget to share it with at least one other person. Don’t make my mistake!

You should also talk together about what should happen if you are unable to be the physical caregiver. This is usually a difficult discussion and therefore avoided. However, fulltime caregivers often die before their charges do. In other cases, they become too ill for them to care for their loved ones safely. Emphasize that such a change would be so that someone else could do the heavy lifting, thus making it possible for you to preserve your health and continue to care for him. Talking about this before it is needed will make the transition to a care facility much easier if and when it is needed. You will have a better idea of what your loved one prefers. More importantly, it will remain with your loved one in some form and decrease some of their resistance.