This special spring weekend marks the time when many families will be celebrating Easter and Passover. It’s a time when traditions and memories unite people with a shared history. But for those with dementia it can also be a time of difficulty due to changes in routine and feelings of agitation.
It’s not easy to merge those segments of the family who love taking this break to do something out of the ordinary — and those we need extra structure. Some of us enjoy hauling out the old recipes and spending hours preparing foods we enjoyed during childhood. But getting tied up in the kitchen might mean taking a lot of time away from loved ones who are used to getting our full attention. It’s not easy to involve them in holiday preparations but figuring out how to do it can help them — and might improve the quality of family gatherings.
My mother’s Adult Day program sent our family a list of recommendations that help minimize holiday agitation for dementia patients. Here are a few suggestions that may help your family, too:
- Prepare your loved one for visitors. Sometimes you have to say it a hundred times, but just making sure they know there will be different people around can help to minimize their confusion.
- If possible, show them pictures before people arrive or ask people to wear name tags. Some people may think it’s a little strange, but I did it when some of my mom’s old friends came to visit her and it made things a bit easier.
- Keep one quiet area in the house where the person with memory loss can retreat if things get too hectic.
- Reminisce about past holidays. Sometimes these conversations trigger memories or pleasant feelings that can calm them and bring them a greater sense of joy.
- Recognize that its common for caregivers to experience feelings of anger, frustration and grief around holiday times. Be prepared for some extra stress and plan some downtime into the end of the day so you can unwind.
Although my mother is very impaired, I know many people who lost a parent before they had the chance to really know them. I feel fortunate to have my mom with me and I try to squeeze all the joy I can from our holiday get togethers. There are no guarantees in life, so it seems wise to choose happiness on those occasions when it’s offered.
The United States of America is still one country. But if you are looking for financial help to pay for dementia care services, it may not seem that way. Each state determines its own spending policies for elder care programs and many states distribute funding in ways that make no obvious sense. Differences between states are often compounded by variations across rural and urban districts. One factor, however, seems to be true across all geographies: Benefits for dementia care improve in locations where elected officials are sensitive to the issue.
The financial policies of your county and municipality can have a big impact on the types of services you can afford to buy for your loved one. These policies are typically formulated as the state’s response to the Older Americans Act which was passed in 1965 as a framework to provide community services that guarantee seniors’ access to a “retirement in health, honor, dignity — after years of contribution to the economy”. Each time this federal legislation is re-authorized, it is subjected to a national review with requests for community input. Once it is re-authorized, each state must then review its own policies and determine how it will comply with the updated federal legislation.
This state-by-state review can result in wide disparities between states with different economic conditions — and those that have a larger aging population. Pennsylvania, for example, provides better benefits for elders than those offered by some other states. This is partly due to the fact that Pennsylvania is home to Philadelphia, which has the highest proportion of senior citizens among the 10 largest cities in the United States. But the state also adds resources to programs for seniors through funding generated by the Pennsylvania Lottery to Benefit Older Pennsylvanians.
After the PA Department of Aging incorporates its funding recommendations into a plan for statewide implementation, each county of the state must review trends and needs of its residents and determine local spending priorities. But there are big regional differences in the amount of money available to spend on senior services. If you live in Pittsburgh or Philadelphia, your region has more money to spend on senior services due to the “hold harmless” clause protecting the large number of seniors in these two urban areas. If you live in a rural part of the state, the budgets for caregiver support programs are much smaller and in some cases, seem very unfair.
What does all this mean for your family’s healthcare budget? Funding differences across geographic lines may provide another opportunity for joint family planning. If there is more than one person in your family who can provide care for your loved one with dementia, you may want to do some research on the kinds of programs and funding streams available to support care in each person’s municipality. Siblings may be living in counties with very different funding pools available to pay for adult day services, caregiver respite, prescription medications, and even elder transportation. You can use information about these programs to develop a long term plan for how you will pay for care over the course of the disease. Learning more today may help you plan better for tomorrow. And don’t forget to “remind” elected officials to protect funding for programs and services that really help your family.