Dementia, Alzheimer's, and Legal Planning

I am not an expert on legal planning and so my first recommendation has to be to schedule an appointment with your lawyer, an elder lawyer, or financial planner as you gather up your legal papers and prepare for a visit. You want everything laid and and smooth for the future with matters concerning health decisions, financial expectations, and final wishes. Letting family know now, when you are of sound mind and body, alleviates problems and confusion in the future.
Many families have Powers of Attorney in order, however, sometimes possibilities are not considered such as moving to another state (when sometimes legal papers do not cross state lines) or changes in family status or finances. Such documents need to be reviewed each year so that everyone is current on future plans.
It is also important that should you become incapacitated, unable to control your own destiny, other may step in with their demands. For example, if you have listed "no heroic measures" are to be undertaken to save your life when it is ready to be complete, a spouse or child may decided s/he is not ready and thus a life may be prolonged while legal and medical matters are sorted out.
In your desire to make everything fair, often this is impossible. Everyone has a slightly different description of "fair". Sue gets Grand-dad's old car - valuable but something she has no interest in preserving - while Alex receives a hefty check. While the two are of apparent equal value one is a potential pay-out while the other has immediate cash value. Suppose Sue wants to sell the old-mobile but the family sends a flurries of "No!" It is hers to sell but at what price in relationships?
After your visit with counsel, you'll have a better idea of how to divide your estate and estate responsibilities evenly. You also need to communicate this orally or in writing in advance. No surprises may prevent at least some potential squabbles when you can longer speak up.

Holiday Thoughts - Adjusted Expectations

Tips for Creating a Smooth and Enjoyable Holiday

• ·     Familiarize invited guests with household changes
•    Do what only what feels reasonable and within your limits - potluck is fine
• ·     Involve your loved one who has dementia in safe, manageable activities
• ·     Maintain normal routines as much as possible
• ·     Build on traditions and memories
• ·     Adapt gift-giving – gifts that are useful like ID bracelets, photos albums, easy-on-and-off clothing
• ·     Avoid gifts like difficult board games, puzzles with too many pieces, complicated electronics, surprise pets
• ·     Try to be flexible – think about celebrating with brunch or lunch instead of dinner. Evenings and darkness add to confusion.
• ·     Avoid excess noise and crowds
• ·     Share good times and celebrate joy

Accessible Bathrooms

Anyone with infants or small children can relate to the disastrous feeling upon entering a bathroom to find no changing table available. Although over time more and more of these have appeared in women's bathrooms, Dads sometimes need to change diapers, too. Their choices? A knee balancing act, a public bench, or eek! the floor of the men's bathroom - or any bathroom, for that matter. The same is true for caregivers with a loved one with incontinence. Imagine the chagrin of dripping or messy pants while out shopping with no family accessible bathroom. Yes, the twosome can jam into a single stall or wiggle into a handicap accessible stall, but what if the caregiver is female and the care recipient male? Then what? Women tend to gawk or squawk as a man is led by the hand into the secret potty realm; men tend to look puzzled and embarrassed. Regardless of reception, changing an adult's pants is difficult, messy, impossible in cramped quarters, and a heartbreak.
You might wonder, Why not just stay at home? Why not just leave the loved one in the car? Why not buy adult diapers? While each of these is a potential solution, to maintain a sense of normalcy and purpose, it is important for caregivers to get out; it is equally important for care recipients to maintain a semblance of former routines. While in later stages of dementia adult diapers can be "snuck" on, in the early stages a formerly dignified and independent individual is now faced with the humiliation of wadded bundles of padding bulkily sticking out of pants hat odd angles. Who wants this?
One solution is, of course, education. the public needs to realize the value of trips out and the need for restroom stops. Family bathrooms are a super solution. And if space and adequate room do not exist, informed business owners and employees who assist the caregiver and clear the bathroom area are needed and much appreciated. Being kind is the right decision.

Time Flies

With all good intentions I plan to write 1-2 blogs each week. And as with many good intentions, it is now one month later and I have finally returned to this screen, this site, and my designated/promised blog.
Coming to Winnemucca (and to your community as well if you contact me) is the Dementia Friends presentation. The goals of DF include educating the public - family, friends, business owners, employees, visually everyone - about how to best help those with dementia. It takes all citizens working together to create a perfect community, and that is a what DF is all about. Let's examine a few of these:
Health Care - We need services that promote early diagnosis, potential interventions, and best practices. Often health care professionals are afraid to mention "Alzheimer's disease", for example because it carries such a devastating stigma. With no reversal, no cure, and no prevention, it does sound dismal. However, education is one step in the solution to making wise and beneficial choices. A prescription and a bandaid do nothing to solve dementia, but knowing resources and seeking them out is so helpful.
Businesses - We need business and provided dementia-informed services and environments that are peaceful and friendly for those with dementia and their loved ones who are working to navigate the intricacies of this disease. Family bathrooms, lever handles, chairs and benches, calming music, and a friendly smile are all part of supporting those with dementia as they try to maintain a "normal" lifestyle.
Transportation - We need buses, taxis, Ubers, trains, and planes that are accessible for those with handicapping conditions including dementia. Confusion occurs about how to open a car door, how to enter the seat correctly, how to buckle (and later unbuckle) the seatbelt. Wise drivers plan ahead, have a helping hand ready, calm music playing, and a friendly voice resonating. These drivers understand that someone with dementia may be lost, unsure of directions, scared by sudden changes in movement and direction. They make sure that passengers arrive safely as they guide them to family or friends in a pleasant environment.
to be continued - within a few days!!

The Word: Dementia

Many individuals and groups have tried to drag the word "dementia" out of the closet and into full view. Doing this is the best way to confront the issue and the stigma attached, however, now it seems some formerly strong voices are backing off, determining that"dementia" is a word that is just too frightening. Because of this people are turned off to a conversation on the subject before the subject is even discussed.
This back and forth has made me confused. Am I supposed to tiptoe through the tulips, so to speak, or shout out the word loud and clear? Can we make a difference in educating others if we are afraid to even utter the word? I understand, on the one hand, the need to proceed with due caution; I also understand that hiding the truth means we will never truly face and solve the confusion and misconceptions about "dementia".
Dementia takes various forms, some less severe, others terminal. Regardless of the form, let's talk about it. Let's discuss the issues and angles. Let's decide how we can make a difference in the lives of those in need.
Let me know - should we disguise dementia and present it as a potential cognitive decline, especially as we age, but that people can live long and well inspire of it?

What Is a Dementia Friend?

Many say we should just throw out the terms dementia and Alzheimer's because of the stigma attached to them. The problem with tossing these words is that we do not really face the reality of forgetfulness that permanently changes the life of an individual and by extension, that of the family. Working as a presenter for Winnemucca and Nevada Dementia Friends, I have come to believe that by addressing the terms, defining them, and then guiding family, friends, and my community to a better understanding, we will be better educated, enriched, and prepared to assist those in need.
A dementia friend supports:
Health care that promotes early diagnosis and uses dementia care best practices along the continuum;
Businesses that offer informed services and environments for customers and employee caregivers;
Dementia-friendly public environments and accessible transportation;
Residential settings that offer memory loss services and support;
Dementia-aware and responsive legal and financial planning;
Caring communities of faith, first responders, law enforcement, and government services

Winnemucca is working to measure up to each of these standards - how well informed and progressive is your community?

Surviving an Alzheimer's Diagnosis

First, be certain that the diagnosis is correct. Trained neurologists or gerontologists can provide the best information after a thorough examination. If indeed, the problem is Alzheimer's make certain that your legal and financial matters are in order - clarify now so that difficulties can be avoided in the future. Find out about all of the health and social services available and then take full advantage of these.
Continue a good relationship with your attending physician. If your doctor is too busy to listen, it may be time to search for a new one. Support is so important.
Remember - and remind yourself periodically - that you are not alone. Begin attending a support group or use telephone and online services. Talking with others really is beneficial.
And as much as possible, remain positive. Find the goodness and calm in the present. You are important, valuable, and deserve dignity and respect.