The Caregiver’s Wait

Posted on May 20, 2012 by Colleen Davis| Leave a comment

How much time do you spend waiting?…for your loved one to finish eating or to find a lost glove?….Dementia complicates their simplest moves. Since patience is not my big virtue, I’ve developed tricks to calm myself through long waits. While Mom weeds slowly through her salad, I sometimes write haiku.

It doesn’t take long to sketch out one of these small poems. The basic form is just three lines. First line must have five syllables, second line has seven, third line has five. As caregiver activities go, this one probably exercises your mind as much as a crossword puzzle. You also get the satisfaction of creating something original. I invite other creative readers to write a haiku and share it here with our caregiving audience. Here are some caregiver moments cast in the haiku form.

Thank God for gardens.

Flower names have slipped away

Blooms still look joyful.

 

Worries crease my face

As your grey head grows heavy

Who, here, is the child?

 

Feet slow as syrup

I can’t take much more plodding

So I’ll sing — why not?

 

Go ahead, write a little poem and post it here. We’re all ears.

Posted in Caregiver II -- Help if you've been at this job for a while, Personal stories

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Mothering our Mothers

Posted on May 13, 2012 by Colleen Davis| 2 Comments

The times when I feel sorry for myself are not my proudest moments. But when you’re caring for a mom with dementia, sometimes you’ve got to ask, “Why me?”  On those days, I try to remind myself that dementia is mainly a disease of old age. If your mom has lived long enough to get it — and you’ve lived long enough to become her caregiver — luck is at work in your life.

Open any tabloid and you’ll be reminded that many children lose their mothers to cancer and drunk drivers. Some kids never know their mom because adoption or divorce gets in the way. A dear friend of mine died at 37, leaving behind a five year old son. She would have suffered any discomfort imaginable to buy one more day with her boy. But science could not help her earn a pass to longer life.

My mom is sick, and there’s nothing I can do to stop the advance of her illness. But I’m so thankful that she lived long enough for me to really know her before dementia took over. I’m grateful that I, too, survived these years and learned what it’s really like to care for a parent I had taken for granted.

Being a witness to this disease can be hard, but on Mother’s Day I try to keep in mind that good fortune wears strange masks. Sharing a meal with my mom and giving her a hug is quite a privilege. Fate has kept her alive and taught me to see that being a “mother” to my mother can be a gift. For the weary caregivers, I say, “Happy Mother’s Day everyone!” And for the many moms we care for: “We love you, mothers!”

Posted in Caregiver II -- Help if you've been at this job for a while, Personal stories

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A Caregiver’s Life Raft

Posted on May 6, 2012 by Colleen Davis| Leave a comment

Water is on my mind. Not the surge of spring rains that make a swamp of my lawn. But the streams and lakes which mirror the flood of emotions set loose by dementia. The storms of this disease feel as vast and deep as the waters of Noah’s flood.

If each caregiver built an ark and invited pairs of friends in, two by two, their boat might still feel empty. People — even many we love — treat the disease like today’s version of leprosee. No one’s getting in that ark unless they’re forced. They prefer to swim alone.

My plan is to make a nice raft. They’re easy to build, and the sun can shine down on each delusion and fit. The raft will be made of all the laughter I’ve shared with my mom: buoyant, silly times when she used the wrong word and somehow spoke better truth. Those moments would be lined up vertically and woven through with dark days which tested our patience and made us strong. The posts of the raft will be lashed with love, hugs looped in and out around each edge. Nothing could hold us more tightly together. What is love if not a tie that binds?

Pontoons go below, to give us hope and keep our heads above water as waves of madness hit. We’ll float and paddle ‘til we’re shoved off to stranger currents. I’ll need a rope to haul myself back when Mom finally gets pulled to the other shore. Charon will throw his hood back and call her to his boat.

I can’t go with her yet. The raft is where I’ll stay. But alone, the waves of life will never feel the same. These treacherous tides have taught me far too much. And that love between the seams is something I won’t travel without.

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The State of Care: Dementia Care Facilities Across State Lines

Posted on April 29, 2012 by Colleen Davis| Leave a comment

Members of modern families are often separated by geography. When a parent’s dementia reaches the crisis point, choosing a residential facility can be very hard. It takes cooperation and research to find a site that offers quality care and shared geographic access.


My friend Rob and his siblings have moved their mother three times. Though the moves were necessary to ensure her care and safety, his mom resisted change. The first stop was an assisted living facility in Florida , her long-time state of residence. Her children were spread across the U.S., but she wanted to stay in Florida so they found a site where staff members monitored her safety and well-being on a daily basis. As her condition declined, it become harder for her children to oversee her care from a distance. Rob’s mom then moved to a second Florida facility with more supportive services. When her dementia advanced further, Rob finally moved her to Pennsylvania. After three moves, his family learned a lot about choosing facilities.

When deciding between providers, Rob’s family reviewed incident reports from each facility under consideration. Sites with many incidents may have serious problems with the delivery of care. Anyone can check the incident records of individual nursing homes by going to the Member of the Family website. Once there, you can click on your state, and compare the number of serious incidents reported at each facility. You can also determine whether a facility has been place on the National Watch list. Homes on the National Watch List have had recent survey violations or substantiated complaints of actual harm or immediate jeopardy to residents in their care.

Ultimately, Rob’s family selected a care facility that was close to Rob’s house. This proximity allows him to check on her every day. His siblings fly in periodically to do the same. The site had some violations but Rob felt they were due to the building’s large size. Residents are spread over 24 floors with various levels of care. He believed that choosing a nursing home near his house would allow him to make more visits to monitor his mom’s care. When I asked him whether he saw much variation in quality at her three care providers, Rob said, “There are problems in all these institutions. But being present as an advocate makes a huge difference.” He thinks his mom is getting better care in Pennsylvania, but that is “only because I’m such an active participant in her care.” In his experience, administrators appreciate family involvement as long as issues are presented in a calm, professional way. If he must discuss problems with them, he writes everything down and gives his letter to an administrator to make a record of the matter. He also reminded me that many people go in and out of a dementia patient’s room and families should never leave valuables there. His family learned this lesson the hard way when his father’s wedding band disappeared from his mom’s room.

Rob also suggests that families consider the type of care a loved one will need in the long run. At his mother’s current facility, she has to run out of money and qualify for Medicaid before she can be placed in a skilled nursing unit. Because there is a wait list for those Medicaid beds, she will get progressive care until a bed becomes available. If your loved one moves to an assisted living facility that has no skilled nursing, later on it may be tough to secure a bed at another site. All things considered, if you are considering a move for your loved one, planning ahead ought to come first.

Posted in Caregiver III -- Help for the challenges that come later in the process, Health Care Services, Personal stories

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Protecting Public Funding for Services to Elders — an Interview with Charles Getz

Posted on April 22, 2012 by Colleen Davis| Leave a comment

In some towns, caregivers can ease the financial burden of dementia care by getting aid from public programs for the elderly. But funding varies widely by county and state. That’s often because certain elected officials champion the interests of the elderly. In Carbon County PA, where I live, elders were helped for many years by Charles Getz, a county commissioner who just retired from public office. I talked with Mr. Getz to learn how and why he supported elder programs.

Although Mr. Getz owns several private businesses — including a horse farm and a bus company — he spent much of his life in public service. In 1977 he won his first election as a local township supervisor. He was later elected to office as a county commissioner. Though he won his final election in November 2011, he chose to retire before serving his term. Mr. Getz felt that the mood during his final campaign season was nasty and divisive, so he opted to retire before a negative political environment could disrupt the quality of his family life.

Mr. Getz became a champion of services for seniors partly because he had been raised to respect the elderly. He attended a one-room school house for his first years of elementary education and spent a lot of time with older people who shared knowledge he came to value. Mr. Getz was also deeply affected by the experience of looking after his own mother who suffered from Alzheimer’s Disease. With the help of his wife and short weekly visits from a nursing aide, they cared for his mother at their home until the end of her life at age 86. Getz was also distressed by the economic plight of elders in his district. When seniors submitted applications to enter Weatherwood, a county-funded home for the aged, they were required to declare their annual earnings. Mr. Getz was shocked at the tiny income on which many elders survived.

During the annual county budgeting process, Mr. Getz’ advocacy for elder care funding was aided by the director of the county’s Agency on Aging. She was zealous in her efforts to educate officials about the need for services and she took steps to cuts costs whenever possible. It was wise, Getz felt, to fund services that helped seniors live safely in their homes for a long time. Many residents in his district had worked hard in coal mines or mills and bought homes in tight-knit communities with strong support networks. Programs that helped them stay at home also cost much less than publicly-funded nursing homes.

Today the number of elderly residents in Carbon County continues to rise. I asked Mr. Getz if he felt the county was prepared for the rapid growth of the elderly population. He says, “The network of services and providers is strong”  but “elected officials will be forced to make hard choices” if the current trend of cutting taxes and public services continues. Eventually, he says, programs “will reach a point where costs cannot be cut further” and needs will not diminish. He feels that the plight of those who have worked hard all their lives should not be neglected. While in office, Mr. Getz listened to constituents when they spoke to him about urgent issues and programs they valued. He believes that government functions best when all branches (local, state and federal) work together. So the bottom line on funding for elder programs is this: To protect public programs that help your loved one — or help you as a caregiver — you must share your views with all candidates running for office during election season.

Posted in Caregiver I -- for those new to caregiving, Caregiver II -- Help if you've been at this job for a while, Health Care Services, Interviews with experts

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Family Finances and Dementia Care

Posted on April 15, 2012 by Colleen Davis| Leave a comment

Seeing the words “siblings” and “financial planning” in the same sentence might make some readers cringe. Tension often escalates when family members feel they have been kept in the dark about money matters or dementia care decisions. Yet some families navigate this prickly business without sacrificing sibling relationships or creating unwanted friction.

When I first waded into the swamp of long term financial planning for my mom, I turned to my friend Rob G. who has managed his mother’s finances and dementia care since 2005. Her symptoms first emerged while she was living on her own in Florida — many states away from her three children. Rob realized the gravity of the situation when he visited and found that she’d left her checkbook in an unlocked car with an open window. He knew this was a sign that it was no longer safe for her to live on her own. With the support of his two siblings, he got his mom a spot in an assisted living facility. She did not want to go, but Rob found a protective place where staff members checked on each resident daily and would notify him if she needed more help.

That place was the first of two Florida sites where his mother lived before he moved her to an assisted living facility in Pennsylvania. Most of the money used to pay for her residential care came from the sale of his mom’s Florida home. But that pot of money is almost gone. During her seven years with dementia, Rob has used several strategies to manage his mother’s resources. The most important thing, according to him, is to complete key documents like a will, power of attorney, a living will, and medical power of attorney at the earliest point in the diagnosis. He also recommends that a close family member keep copies of all these documents. That way, if a person’s health status changes unexpectedly, the whole family will be prepared to take necessary action. Health information privacy laws might prevent you from discussing even a medical bill if you do not have these legal papers. Rob also obtained signatory power on his mom’s bank accounts after the checkbook incident. This allowed him to keep paying her bills as her condition declined.

After selling his mother’s house, Rob’s family did an analysis of how long the sale proceeds could fund her care. They set up a gifting process to put aside financial gifts for each of her children according to tax year limits. Under current IRS tax law (see Publication 950) a parent may gift each of their children $13,000 per year. However, if the parent ends up with no income and must enter a Medicaid funded facility, there is a five year look-back period. Any gifts that have been made during those five years must be paid back to fund care. To cover cash needs for the immediate future and track  gift funds that might have to be available for care, Rob keeps a spread sheet. He uses this to calculate the number of gift dollars that might have to be paid back for his mother’s eventual placement in a skilled nursing unit. He also suggests that families notify facility administrators when the family member starts running out of money. These manager may be able to downsize the loved one’s living space to reduce monthly costs. They can also advise families about options like creating an irrevocable burial trust which can be paid for in advance and is exempt from the five year look-back rule.

Rob has assumed most of the responsibility for these financial decisions because he lives closest to his mom and serves as the primary caregiver. But to prevent family money squabbles, each of his siblings can review their mother’s accounts at any time to see exactly how money is being spent. They each also have power of attorney in the event that Rob would be unable to fulfill this role. Rob has made many care decisions on his own, but he affirms that this is mostly because it would take a lot of time to educate his brother and sister on pertinent issues. In his experience, they’d all end up coming to the same conclusions and he feels that time is better invested in his mother’s care. Rob prefers to focus his available energy on his mom who, more than anyone else, needs his attention and love to maintain a decent quality of life.

Posted in Caregiver II -- Help if you've been at this job for a while, Caregiver III -- Help for the challenges that come later in the process, Personal stories

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Creating the Happiest Holidays

Posted on April 8, 2012 by Colleen Davis| 1 Comment

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.

 

Posted in Caregiver I -- for those new to caregiving, Support for Caregivers

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Location, Ca$h, and Care

Posted on March 25, 2012 by Colleen Davis| 1 Comment

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.

 

 

Posted in Caregiver I -- for those new to caregiving, Health Care Services, Support for Caregivers

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The $pending of the Green

Posted on March 18, 2012 by Colleen Davis| 1 Comment

On this St. Patrick’s weekend, we seen green everywhere — even in the new leaves on the trees. But if you are a caregiver for someone with dementia, you’re probably preoccupied with a different kind of green — the U.S. dollar variety which can be consumed very quickly by dementia care. The next few articles on this site will discuss some factors that may help you stretch your resources.

Every day I thank the moon and stars that my mom planned her financial future with so much care. She was not a wealthy person, but she worked hard all her life and maximized her retirement savings. As her power of attorney, I feel that it’s my job to be a good steward of her resources and — with my sister’s help — I keep trying to anticipate her future needs as we manage current ones. A few basic factors can make all the difference between balanced financial management and disaster.

1) Long Term Care Policies — Our Mom bought a good one through AARP a long time ago. Thank heaven for that! We have been able to use those resources to pay for adult day services and the occasional caregiver break  for me. These funds allowed us to provide her with very good care at minimal cost for nearly two years. The same amount of money would have purchased just three months of care in a private nursing home. If dementia runs in your family, I suggest that you do some research on these policies now and consider buying one for yourself. But be sure you check out the fine print on benefit payments before you sign a payment agreement. If your loved one already has a policy, shop around and see what programs and services are covered. Do some projections to ballpark the long term costs.

2) Get the best, most specific diagnosis. The hardest aspect of financial planning is uncertainty over the duration of the disease. If your loved one has a straightforward case of Alzheimer’s, you may be providing care for a long time. You’ll need to forecast how much and what kind of care you want to buy. Other types of dementia, however, often have a shorter course of development, but may need more intensive services. The only way you can plan well is by getting a diagnosis that is specific enough to help you predict the symptomatic path of the disease. If you are just working with a family physician, you might want to start looking for more specialized diagnostic services at a regional Memory Center. It’s worth the effort to get a more detailed diagnosis. Medicare will usually cover diagnostic visits to a specialized dementia doctor. (But always check first!)

3. Settle your family business. If you are a member of a family — and who isn’t? — then you know that no matter how much people love each other, there are often disagreements about assets, who will control them, and how they should be used. Too many times people carry childhood grudges into adulthood. And families keep adding members all the time (grandchildren, in-laws, ex-in-laws, etc.) so there is literally no end to the potential number of disagreements that can be triggered by asset questions. Now is the perfect time to call a truce. And ENFORCE it! The more you can get family members to agree around a plan of care, the better off you’ll be. Get everyone to collect information about nursing homes, home-based care, and regional care options as a group. Then sit down and share the information. If decisions are made in haste by one person, some family members may get embittered because they’ve been left out of the process.  Try to find your common ground before the disease backs you into a corner.

The most important thing you can do as a family is work together on behalf of those you love. Property has a value that is vital to the care equation — but love is all you have left once that property is gone. Don’t squander it!

 

 

Posted in Caregiver II -- Help if you've been at this job for a while, Caregiver III -- Help for the challenges that come later in the process

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Caring for Ourselves II: Diet, Purpose, Spice, Life

Posted on March 4, 2012 by Colleen Davis| Leave a comment

Dementia looms like a mythical monster with countless arms and changing faces. We try to be brave as we confront the challenges of the disease. But while we care for others, our self care must find a high place on our to-do list. Our actions are the only real defense against getting the disease ourselves.

Last week this site offered ideas about physical habits that can help us maintain good health. Now let’s consider diet and lifestyle choices. The ideas below were drawn from an article by Beth Howard in AARP Magazine. But similar recommendations have been made in a wide range of recent articles from international research institutes like Rush University and the Karolinska Institute.

1. Eat with your health in mind. Caregiver stress may make you crave salty carbs or sweets, but you can help yourself much more by eating some version of the Mediterranean diet. Try to focus on  fresh fruits and green, leafy vegetables. If the oranges and apples in your supermarket are too expensive, check out farmers markets in your area. Seasonal foods are often cheaper and more nutritious than chain retailers’ expensive produce.

2. Add spices to your food. Science has discovered some amazing links between better brain health and consumption of cinnamon, parsley, ginger and turmeric. Turmeric is thought to bond with the amyloid plaques that have such devastating effects on dementia patients. This spice has even been found to have positive effects on cancer patients.

3. While you’re adding spice to your diet, make sure that you aren’t suffering from any vitamin deficiencies. People who do not absorb enough Vitamin B from their food can put themselves at risk for lower brain performance.

4. Hone in on the higher purpose of your life. Some of us have a clear sense of why we are here and what we want to accomplish through our actions. But the caregiver role can make us forget that we have a purpose beyond care. Keep a journal, reserve some quiet time, or just meditate on your goals to help keep your inner compass steady.

5. Maintain your social connections. If you don’t take time to talk with friends, relatives or other caregivers, you may be depriving yourself of an important source of protection. People with larger social networks have a strong, proven health advantage.

Time, of course, is our sworn enemy. Getting from sunrise to sunset can feel like a marathon. But some of these recommendations require just two minutes in the spice section of the supermarket or one hour at a caregivers meeting. These small investments in ourselves may make the difference between staying healthy longer or facing a devastating illness we still have time to prevent.

Posted in Caregiver I -- for those new to caregiving, Caregiver II -- Help if you've been at this job for a while, Caregiver III -- Help for the challenges that come later in the process, Support for Caregivers

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