I just returned from a wonderful weekend spent with four friends from college. We have been friends ever since we pledged Kappa Kappa Gamma in the mid seventies, some 30 years ago. We live in four different states and cherish our yearly “girl’s” weekend. Throughout the year, we keep in touch by cell phone and e-mail. However, there is nothing like being together, sipping wine and sharing family news, career challenges, and our love of new shoes. Discussing the pros and cons of reaching the half century mark always comes up too. Among us you will find wives and widows, mothers and stepmothers, and daughters of aging mothers and fathers.
In years past, our conversation revolved around our children. We looked to each other for advice and support as we coped with the terrible twos, middle school independence and aggravating adolescents. Something different happened this year. Caregiving was still a topic of conversation, but centered on our parents, rather than our children. We are all caregivers, with a parent or parents that are facing issues common among older adults: chronic illness, medication management, cognitive decline, financial concerns, fall risk, and driving conflicts.
Each one of us expressed concern and a willingness to help. We wanted to help our parents remain independent and honor their wishes. Yet, we had so many questions!!! All weekend long, we discussed and debated how best to help our parents. Without realizing it, we became a caregiver support group and were comforted by sharing our concerns, ideas and strategies with dear friends. We have continued the support by raising issues, asking questions, and providing updates via group e-mails. We haven’t yet joined the facebook revolution, but have formed our own informal eldercare exchange network to help us cope with our aging parents.
I feel incredibly fortunate to have such a caring group of friends. Their support has helped me through all stages of life and continues to prop me up when I’m concerned about my Mother and how best to help her. I encourage every caregiver to find either an informal or formal support group. Talk to your friends , neighbors and colleagues about caregiving. My guess is you will find someone else who is an active caregiver. Also, explore formal support group opportunities offered by organizations such as the Alzheimer’s Association, local hospitals and/or assisted living and long-term care facilities.
Caregivers should explore eligibility for Veterans benefits. Veteran health benefits are open to all Veterans. Family members may also be eligible to receive benefits. There is no monthly premium for VA care, but there may be a co-pay. For more information, visit the VA Health Care Eligibility & Enrollment www.va.gov/healtheligibility .
Additions resources are available at:
- Your local VA health care facility’s Enrollment Office
- www.va.gov/healtheligibility
- www.myhealth.va.gov
- Veterans Health Benefits Service Center 1-877-222-VETS (8387)
- Family member benefits www.va.gov/healtheligibility/familymembers
Veteran or Surviving Spouse Benefits Information
Veterans Financial, Inc. is a national company (not a part of the Veterans Administration) that provides free financial advice to veterans and their families who may now or in the future need assistance in their home, assisted living, or long term care facility. Veterans Financial helps veterans and their surviving spouses apply for the VA’s Aid and Attendance benefit to ensure they are getting the benefits they are eligible for. Aid and Attendance
The Aid and Attendance benefit is a benefit paid in addition to a monthly pension.
You may be eligible for the Aid and Attendance benefit if the veteran or the surviving spouse:
- Requires the ongoing aid of another person in order to perform basic personal functions required in everyday living (i.e. bathing, eating, dressing, etc.) -OR-
- Is bedridden -OR-
- Is a resident in a long term care facility due to cognitive or physical incapacity -OR-
- Is blind, or nearly blind
Once Veterans Financial has an idea of your specific situation, they will advise seniors and/caregivers on options you have and help with the application process to help obtain the Aid and Attendance Benefit.
For more information on Veterans Financial, Inc. please visit: www.veteransfinancial.com or contact them at 800-835-1541.
When I was a small child, a trip to my Grandmother’s house wasn’t very exciting. For my Father’s Mother was quite elderly and her home contained itchy mohair couches and an absence of toys…except for an old fire truck and Lincoln Log set, leftover from my Dad’s childhood. It meant getting dressed up and being on my best behavior. My education minded Grandmother had gone to college in the 1920’s – a very unusual thing for a woman to do at the time. She was the wife of a minister and a lovely, intelligent, caring person. However, it was intimidating when she asked probing questions such as… what are you learning in math, what books are you reading and where are you going to college…… when I was only in second grade.
However, I do have some favorite memories about going to visit Grandma K. She had these great pictures of my Dad and it was fun to see him as a child, as a member of his high school basketball team and later in a Navy uniform. The other highlight was the Humpty Dumpty teapot. The teapot was made in two pieces – the bottom section was a yellow brick wall and the top was a yellow, egg shaped Humpty Dumpty, painted with gold features. It was a thrill when this was taken out of the china cabinet and used when my Grandmother served tea. It was very, very special (I don’t think we were allowed to touch it) and it fascinated me. Chocolate covered graham crackers and pastel bridge mints were also part of every tea and to this day I think of my Grandmother when I come across these treats.
After my Grandmother passed away, my Mother and Father inherited the Humpty Dumpty teapot. It followed our family through a multitude of moves and always found a special place in our home. Today, due to space constraints, it sits atop my Mother’s refrigerator in her Assisted Living apartment.
On Monday, I took my Mother out to lunch. While walking from the car back to her apartment, she became short of breath and we stopped to rest. As she went to sit in the chair, she fell and although I had her arm…I couldn’t prevent the fall. Thankfully, she was okay, but it was another sign that her mobility has decreased greatly in the past few months.
As we reentered her apartment, I went to the fridge to get her a cold drink, while she rested in the den. I looked up and there was Humpty Dumpty looking down at me. I had a fleeting thought that my Mother had become Humpty Dumpty, as falls were becoming an increasing part of her life. I said a quick prayer that she wouldn’t experience a disastrous fall and gave the Humpty Dumpty teapot explicit instructions to watch over her… just as he has watched over our family for generations.
My Mother has lived in an Assisted Living facility for almost two years. In many ways she has adapted well and I think she is comforted by the fact that I live nearby. However, as her Alzheimer Disease progresses, I often hear “I want to go home.” In talking with others, I’ve learned that this is quite common... yet hearing it tears at the heart of every caregiver I know.
Following are some tips you may find helpful when the senior in your life tells you repeatedly: “I want to go home.”
- Remember that it is very common for a senior to repeat this request often. Usually they mean the home from 60 or 70 years ago, not the one they left most recently.
- “Home” means different things to different people – love, security, belonging, safety. When a senior asks to “go home,” try to determine if there is an “unmet” need (i.e. need to feel safe, need to belong) and try to fill that as best you can.
- Don’t refer to the senior’s current location as home. Point out that they are staying there for “awhile.” When they say “I want to go home” tell them you will talk about it and name some future date.
- Find a good reason for them to stay where they are – i.e. people are nice, good food, close to family, nice apartment, fun activities and try to get them to “buy into it.”
As a caregiver, the responsibility for decisions regarding your parent’s care falls to you. Often you wish you could discuss the options, choices and next steps with your parent, just as you discussed so many choices in the past…where to go to college, where to have your wedding reception, which neighborhood to select. But parents with Alzheimer’s cannot help with current decisions as their ability to reason, compare and choose has been ravaged by the disease. Sadly, dementia robs them of their ability to chart their own course.
So, what should caregivers do when faced with a variety of paths – how do you know how to choose what is best for your parent? How do you know when a parent’s living environment is no longer safe? How do you know when a parent needs more assistance?
Here are a few suggestions:
- Pay attention to your parent – they may be confused, but they will give you clues when things aren’t going well. They may seem more agitated, confused or disoriented. Their routine may change and a situation that has worked well in the past, now poses problems. For example, they may no longer want to eat dinner because they either can’t remember where the Assisted Living Dining Room is located, or they are afraid to leave their apartment.
- Check in with their caregivers – have other family members, a companion, assisted living staff or adult day care workers noticed a change in your parent? Are they concerned?
- Take your parent in for a check-up – have the Doctor evaluate your parent and review their medications and mental and physical health.
- Review your parent’s ability to complete Activities of Daily Living – things like bathing, dressing, continence, mobility, feeding. Has there been a change in their ability to do these things?
- Engage a Geriatric Care Manager – have them conduct an independent assessment to provide an unbiased view of the situation.
Once you have gathered the above information, spend time thinking and talking to others you trust about the findings. Choose the next step based on what you think is best for your parent at this moment in time. For instance, if you determine that they need more assistance, think about the pros and cons of providing additional assistance in their current environment vs. moving them to a new environment such as a Memory Care Unit. There is no “right” decision. Take comfort in the fact that you have been both thorough and thoughtful when you made the decision. Always remember that your parent is better off when you address concerns as they arise vs. postponing decisions until a crisis arises.
Exercise is important for those who have heart conditions and can help them maintain their independence longer. Many assisted living facilities offer aerobics, exercise, or even tai chi classes. While exercise directly impacts your physical health, research has also shown that staying active impacts cognitive health. The Alzheimer's Association states that what is good for the heart is also good for the brain. Ideas for exercise include: taking a dance class, walking to the store, parking further in the parking lot at the store, and gardening. For more information about seniors and exercise please visit the Centers for Disease Control website for physical activity for older adults: http://www.cdc.gov/physicalactivity/everyone/guidelines/olderadults.html
My Mother has declined precipitously during the past six weeks. We’ve watched helplessly as her confusion increased, her mobility worsened and her sense of time and place evaporated. Yet, a routine Doctor’s appointment and lab work did not reveal any treatable physical changes.
Yet, everyone around her noticed the decline – my sister, the companion, her Health Care Manager (a geriatric care manager from My Health Care Manager) and the nurses at the Assisted Living facility. We were saddened to see my Mother struggle with this new stage of life and worked together to offer additional support. We all ASSUMED that this was the natural progression of the dementia.
Our Health Care Manager was puzzled by what my Mother was experiencing. She had worked with many, many seniors and felt that my Mother’s cognitive decline did not fit the typical pattern. She felt that the changes my Mother started to experience happened overnight vs. being a gradual process. It bothered her, so she sent a letter to my Mother’s physician and explained her concerns. This led to a conversation between my Mother’s Doctor and the Health Care Manager. As they reviewed my Mother’s case, a light bulb went off. My Mother had a medication change in December….was it possible that the med change was negatively affecting her current physical and mental state? Was it possible that the changes we’d noticed were not necessarily caused by the next stage of the dementia, but a medicine interaction?
Thanks to the Health Care Manager’s detective work and follow up with the health care provider, we’ve stopped the new medicine that was added to my Mother’s care plan in December. We have our fingers crossed that we will see a difference and that some of the decline will be reversed. It is possible that there are other causes – a series of small strokes, for example. But for now, we are addressing what the Doctor thinks is the most likely cause.
We’ve learned a good lesson. Never assume that even small changes are “normal” …question everything! And seek professional help whenever necessary.
The following article was adapted from AgingCare.com
"Tax Tips for Caregivers: Can I Claim my Parent as a Dependent?
By June A. Schroeder, RN, CFP
It isn’t just time, but money that most caregivers donate to help maintain the ones they love. I know. I did it for years following willingly in the footsteps of my mom who also did it for years. The financial toll is often insidious. You shop and include their groceries, pay for repairs and the gas for trips to the doctor, you lose time at work and pretty soon we’re talking big money. To compensate you cut back on vacations, cut or discontinue savings, don’t get your teeth cleaned or you may even take out loans to cover caregiving costs.
There are several options that might help you save money on your taxes:
Claim your aging parent as a dependent
Deduct your medical expenses
Use a dependent care credit
Open a reimbursement account at work
According to the first in depth study of such expenses released in November 2007 by the National Alliance for Caregiving and Evercare, a division of United Health Group, the annual out-of-pocket cost of elder caregiving is $5,531. Long distance caregivers spend about $3,000 more. These numbers are twice the previous estimates and are more than the average household spends on health care and entertainment combined.
For over a decade, there has been much talk but little action on periodically proposed national legislation to provide more tax relief in the form of tax credits or deductions for the more than 20% of Americans currently involved in caring for older relatives, spouses and friends. Both Presidents Clinton and Bush proposed a $3,000 tax credit to assist persons with long-term needs and the family members who care for them. The most recent Bill S#2267, Americans Giving Care to Elders Act, was introduced In November 2007, read twice and sent to committee. Caregiving is sure to become an issue in the upcoming presidential campaign, as evidenced by Hilary Clinton’s recently announced plan for caregiver relief. Until more relief comes along, it is important to understand and take advantage of the tax benefits that are available to you if you are supporting an elderly spouse, parent or relative.
Claim Your Parent as a Dependent on Your Taxes
The income of the person you are claiming cannot exceed the personal exemption of $3,400 (in 2007) excluding Social Security and tax exempt interest. They must be a relative or have lived with you for the past year, must be a resident of the U.S., Canada or Mexico, and not filed a joint tax return with a spouse. IRS Publication 501 gives details on dependency requirements, including caregiver income phase-out levels.
In addition, you must be providing over half of their financial support for food, housing, medical, transportation, etc. If the person lives with you, include a reasonable percentage of your mortgage, utilities and other household costs in determining your level of support. Those who are in an assisted living or long term care facility can qualify as dependents if the income and support levels are met.
Often more than one family member is involved in the support. The one who is providing more than 50% of the support is entitled to claim the dependent. Be sure everyone is on the same page so you don’t run into trouble with more than one person claiming the individual. Arranging to alternate years or establishing a Family Limited Partnership might options to consider.
Deduct Medical Expenses From Taxes
Medical expenses are deductible as an itemized deduction on Schedule A of the 1040 to the extent they exceed 7.5% of adjusted gross.
In the words of IRS Publication 502: “Medical expenses are the costs of diagnosis, cure, mitigation, treatment, or prevention of disease, and the costs for treatments affecting any part or function of the body. They include the costs of equipment, supplies, and diagnostic devices needed for these purposes. They also include dental expenses. Medical care expenses must be primarily to alleviate or prevent a physical or mental defect or illness. They do not include expenses that are merely beneficial to general health, such as vitamins or a vacation.
Medical expenses include the premiums you pay for insurance that covers the expenses of medical care, and the amounts you pay for transportation to get medical care. Medical expenses also include amounts paid for qualified long-term care services and limited amounts paid for any qualified long-term care insurance contract.”
If you buy equipment or make home improvements, they may be deductible IF they are for relief of sickness or disability not just convenience or transportation, i.e. ramps, railings, wheelchairs. You can also include in medical expenses what you pay for prescribed medicines and drugs. Long term care facility monthly fees attributable to medical expenses are also includable.
Keeping good records, including mileage and supplies, may allow you or your parent to qualify for some tax relief yearly or to plan ahead to consolidate expenses for another year. A strategy dubbed “doubling up” on deductible expenses uses the standard deduction one year and itemized deductions the next.
Dependent Care Credit
You may be able to claim this credit if you pay someone to care for your dependent or your spouse who is not able to care for him/herself. To qualify, you must pay these expenses so you can work or look for work. The credit can be up to 35% of your expenses. IRS Publication 503 contains full information and worksheets and also discusses the employment tax rules for household employers. Your state may be one that also provides tax credits or deductions which build on the federal credit.
Reimbursement Accounts
If you are working at a company that offers a plan that allows for pre-tax deduction of dependent care and/or health care expenses, you can use those dollars for items not eligible for the Medical Expense Deduction or for relief if you will not be able to itemize. Tax law changes have added non-prescription medications, like aspirin and cough medicine, to the list of reimbursable items. Some plans require you to “use it or lose it” each year while others allow a carry-over to the next year for unused funds. Be sure to check out the details and plan accordingly.
Caution: Tax Liability?
Having a formal agreement about caregiving in exchange for the family homestead or some other deferred benefit, might be construed as “taxable compensation” as evidenced by the 2003 federal court decision in United States vs. Dieter. Mary Dieter’s receipt of the home was treated as “taxable compensation for services rendered.” In another circumstance, if the care recipient goes on Medicaid, such an exchange could be considered an illegal divestiture. Understand the laws and plan accordingly.
In conclusion, if you don’t already, with a few adjustments, you may be able to qualify for some of the tax advantages listed in this article depending on your income level and situation. Furthermore, the state in which you live may offer benefits as well. Learn what you can and consult a qualified professional for planning and preparing your taxes.
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June Schroeder is a Certified Financial Planner (CFP®) with Liberty Financial Group in Wisconsin, and has been working in financial services since 1979. Schroeder is also an RN, having received her degree from UW-Milwaukee in 1969. She served for 7 years as the Director of Economic Security for the Wisconsin Nurses Association, making her uniquely qualified for her role as a certified financial planner. She has written extensively for local publications as well as CNBC.COM. She has taught courses and lectured nationally on financial planning for universities and colleges."
**The following post is from my guest blogger, Natalie Langley, MSW. She is a Geriatric Care Research Analyst for SCANS (for more on SCANS, please see Eric Tinsley's blog by clicking here).**
If you are a veteran, a surviving spouse of a veteran, or a caregiver of a either, I'm sharing some important information on veterans benefits today. Veterans or surviving spouses of veterans who may now or in the future need caregiving assistance in the home, assisted living, or long term care facility you may be eligible for the Aid and Attendance Benefit. Veterans Financial (not affiliated with the Veterans Administration) is an organization that can help veterans and their families obtain any eligible benefits. Veterans Financial is accredited by the Better Business Bureau (BBB).
The Aid and Attendance benefit is a benefit paid in addition to a monthly pension. You may be eligible for the Aid and Attendance benefit if the veteran or the surviving spouse:
- Requires the ongoing aid of another person (caregiver, home health aid, or another) in order to perform basic personal functions required in everyday living (i.e. bathing, eating, dressing, etc.) -OR-
- Is bedridden -OR-
- Is a resident in a long term care facility or nursing home due to cognitive or physical incapacity -OR-
- Is blind, or nearly blind
For more information on Veterans Financial, Inc. please visit:
www.veteransfinancial.com or contact them at 800-835-1541.
Remember Hillary Clinton’s book It Takes a Village which was written to address caring for children? I find this same approach applies to the senior population. It really does take a group of people, making a concerted and coordinated effort, to assist seniors as they age. It takes time and careful thought to build a “village” for your parent. Following are a few ideas to help you get started:
- Family – Primary: spouse (if living), brothers and sisters, children, grandchildren, great grandchildren
- Family – Secondary: nieces, nephews, cousins
- Friends: lifelong friends, new acquaintances, neighbors, club associates, church members
- Health Care Providers: Primary Care Physician, Specialty Physicians, Physical Therapists
- Geriatric Care Manager: Professional (typically nurse or social worker) to provides care advisory/advocacy service addressing specific needs of senior
- Companion: Paid caregiver to provide services as needed: cooking, transportation, companionship, assistance with activities of daily living
- Skilled Care: Paid clinical care provided by licensed practitioners
Independent Living or Assisted Living Facility Staff: Nurses, administrators, social workers, certified nurse assistants
Care assistance and expertise is available from many sources. Plan your village now - don’t overlook the many ways a support system can be built for your parent.
Why is pain not addressed adequately? Many older adults are reluctant to report pain fearing additional tests and/or bills that they cannot pay. Also, they want to be seen as "good patients" or do not want to waste the health care professional's time with complaints about pain.
For caregivers helping their aging loved ones, it is important to help the older adult understand that they need to report their pain and deserve to have their pain controlled. One way for older adults to communicate with physicians is to keep a pain journal and track the following: When they experience pain; how long it lasts; whether it is a burning pain, a stabbing pain, or an aching pain; whether it happens with movement; what makes the pain better or worse; and what activities, if any, the pain keeps the older adult from participating in.
For more information, you can contact the National Pain Foundation or the American Pain Society.
Some of the activities today's seniors are involved in include:
1. Travel clubs - On a flight to Scotland last year, I sat next to a retired couple who joined a senior travel club a couple years before. They told me a story of getting married after high school, working their whole lives, and raising a family. They rarely traveled during this time, so they decided it was time to see the world. They had been to every US state except for 2 (but those were on the "to do" list) and had been to numerous countries in their travel club. This is a goal I hope to achieve myself one day!
2. Political events, campaign assistance
3. Wellness and fitness clubs/activities
4. Charity or volunteer work
5. Dance classes (ballroom dancing, salsa, etc)
6. Nintendo Wii game parties
7. Creative arts classes (theater, artwork, pottery, glass blowing, etc)
8. Trying new foods and restaurants
9. Attending local theater events, the symphony, or historical museums
10. Monte Carlo Night (casino games)
11. Shopping excursions to nearby cities
12. Book clubs
13. Investment clubs
14. Indulging in new hobbies (photography, coin collecting, golf, etc)
15. Learning how to play a musical instrument
16. Cooking classes
17. Becoming a senior companion
18. Winery tours
19. Computer classes
20. Happy hour events
The following article is from Agingcare.com: The Community for Caregivers and is in addition to the previous blog, Caregivers and Stress.
"Don't Let Caregiving Ruin Your Other Relationships
by Carol Bradley Bursack
In the 1970s, there were ongoing debates about whether a woman could balance a family with a career. The discussions centered on being a good wife, mother and employee. The question seldom posed, in those days, was how, besides being a wife, mother and career woman, could a woman also be a good daughter?
Today, we hear about the toll elder care takes on families as routinely as we heard the former arguments in the ‘70s. Adult children are being faced with choices (or seemingly, assignments) they never thought about before. They are raising children or teenagers and holding down a job, when suddenly they find that their aging parents need an ever-increasing amount of attention.
Why is elder care more of an issue now than in the past? For one thing, people are living longer than they used to and, often, they are not living with good health. Yes, we all love to point to the 93-year-old guy out there playing golf everyday, and these people exist. I know a couple of elders like that and they are a joy to behold.
However, many elders today are stroke survivors, or are suffering from diabetes, lung problems or dementia. Sometimes they have a combination of these ailments, and others, which likely would have caused death even a decade ago. Now, medical advances provide lifesaving options. Many of these people live – some even living fairly good quality lives – but they need assistance from family or paid attendants.
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We have partnered with ElderCarelink.com to provide a free referral service that helps you find everything from Home Care and Assisted Living to Financial Planning and Personal Emergency Responses. Let us assist you.
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Another piece of the puzzle is that many people have chosen to have children at a later age, thus putting them in a position where they have young children and older parents at the same time. This can be a delightful combination, as long as the elders are reasonably healthy, but when they are not, the adult children of the elders, also parents of young children, can be faced with very difficult choices. These are the people now famously known as the Sandwich Generation.
Whatever the circumstances are that propel people into elder care, the problems that can come from it are myriad. All you have to do is click on the Agingcare.com community forum and you’ll quickly see that many caregivers, both men and women, find themselves feeling pulled in so many directions that they can no longer find their soul.
They fear for their own health – mental and physical – as they try to take care of the needs of three generations, the most demanding often being the elders. Caregiving for a sick elder, especially one with dementia, can become so all-consuming that the caregiver’s other relationships suffer.
First to go is the time, or even the energy and desire, to maintain friendships. Even maintaining friendships that go back years can seem like just one more thing to do when a caregiver is so swamped with demands.
So, caregivers stop seeing friends, hence friends stop asking them to do anything fun. Friends get tired of being turned down. And caregivers forget that life was once fun. They are too busy giving care to everyone else to even notice the loss.
Then there are the children at home. I had two young sons when I started going through my two decades of elder care, seven elders total. One of my sons has multiple health issues. I believe I gave my sons as much attention and care as any mother could, but I was always torn. It seemed someone always needed me. A child was sick and an elder’s personal alarm was set off. What should I do? How should I handle it?
Or I’d just be having fun with my sons, and I’d get called away on an emergency. My sons got used to me telling them that we had to stop what we were doing, be it playing music, reading or a craft, because I had to run to Grandma’s and see what’s wrong, since her personal alarm was set off. Or I had to meet the ambulance at the emergency room, because Grandpa fell at the nursing home and broke his arm. Or I needed to reschedule my uncle’s doctor appointment, because he was had gotten the flu.
Certainly, it doesn’t hurt children to know that elders need care, and children need to share their parents with the older generation. Likely, my kids had a little too much of that, but they survived. However, some children have much tougher issues than mine had to face. Some have grandparents with dementia living in their home, verbally or even physically abusing them. Or a single mom and her kids find it more economical to live with the grandparents, but the grandparents end up sucking up all of Mom's time. The parent – the caregiver to generations – can’t see a way out, so the family stays. But the relationships with the children are damaged.
And then there are the marriages. I hear from many caregivers who have supportive spouses, but I also hear from many who do not. The spouse feels neglected. The spouse never liked the elder, and now that the elder needs a lot of care, the spouse becomes even more resentful. The stress in the marriage can be intolerable for both sides. Marriages can and do break, under the stress of caregiving.
How much do caregivers owe their aging parents? Do they owe their health, their financial future, their family relationships? Where does “honoring your parents” begin and end?
I don’t believe anyone owes their own health, their marriage or their children’s emotional well-being to the elder that raised them. In most cases, the elders, if they could think straight, wouldn’t want that kind of sacrifice made for their benefit. However, often they’ve gotten to a point where they don’t recognize what they are demanding of the caregiver, so they resent not getting every need met and make that resentment well known.
This is where caregivers must take a stand. They must look for outside resources such as their state aging services for some direction. They must learn to balance their love and their time, giving as much care as possible to the elder, yet making sure that they have time, patience and energy for their children, their spouse and even their friends. If they don’t do this early on, breaking the pattern will become harder, though not impossible, as time passes.
Certainly, if the elder’s life is coming to a close, the whole family should gather around in support. But if elder caregiving is a long-term situation, the caregiver should look for balance. She needs to set boundaries as far as the elder care goes. If she does not, all relationships that matter will be damaged, even the relationship with the elder. The caregiver who feels she has given up everything for everyone else will find that no one got what they needed. If the elder care situation sucks the life out of all other relationships, everyone loses.
For over twenty years author, columnist and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Because of this experience, Carol created a portable support group – the book “Minding Our Elders: Caregivers Share Their Personal Stories.” Her sites, www.mindingourelders.com and www.mindingoureldersblogs.com include helpful links and agencies. Her newspaper column, “Minding Our Elders,” runs weekly, she speaks at many caregiver workshops and conferences and has been interviewed by national radio, newspapers and magazines. She is the moderator of the AgingCare.com forum."
Meeting with elderly couples who plan to marry is one of the more enjoyable times spent as an elder law attorney. There is no discussion of the pain that may have been suffered when an earlier spouse died. There is no discussion of current health care problems. Financial considerations seem to be put on the back burner. Sometimes the new spouse will be someone they knew from the past. It is like the couple has become young again. Hope springs eternal. It is my job to explain to the couple, hopefully without dampening their spirits, what their rights are with and without a premarital agreement.
A premarital agreement often states that each party, even though they are about to be married, would like to control the destiny of their own property which was earned before the marriage and without the help of the other. There is often a desire to state that in the event of a separation or divorce that the other has no call on the property and that in the event of death, there is a right to pass such property on to their children from a previous marriage.
Without a premarital agreement a spouse cannot be disinherited. There is an obvious public policy concern about spouses disinheriting each other and so there are laws that allow a surviving spouse to take a share of the deceased spouse's estate even if they are left nothing. This share is between 25% and 50% depending upon the circumstances. A premarital agreement waives the right to this elective share. 
Indiana also has a survivor's allowance provision which says that a surviving spouse automatically is entitled to $25,000 worth of property. This right can also be waived by the premarital agreement.
There are several things that must be considered in doing these agreements:
- The assets of each person must be fully disclosed in the agreement.
- Each side should get their own attorney to look at the agreement, but often the parties use the same attorney and the agreement just states each had the opportunity to hire independent counsel.
- I think it is important to talk about who is responsible for health care costs because these can be significant. Medicaid is the program that pays for the majority of nursing home care in Indiana and Medicaid ignores premarital agreements. This means that even if there is a valid premarital agreement that says each spouse is on their own, Medicaid will still combine their assets for eligibility purposes.
- The new couple can combine some assets in joint accounts and such accounts will not be bound by the premarital agreement. The agreement will control only those assets kept in separate name.
I got several comments on my caregiver blog about Therapeutic robots. Several people were intrigued and others where "cautionary". The cautions are well founded. If you are caring for aging parents, you have to view technology as a tool, not a pat answer. Some dementia patients might find a robot a cause for paranoia or even an object of anger. So instead of enhancing a sense of well-being it could actually damage it.
A professional geriatric care manager can help with these kinds of decisions along with other health professionals.
Here is another article about Paro which you may find interesting titled, Robot baby seals to replace cats and dogs as pets in hospitals, nursing homes. This article explores the artificial intelligence capabilities in a little more depth.
The following article is from washingtonpost.com:
"FRIDAY, Dec. 19 (HealthDay News) -- Much has been reported about the stress and burden of caregiving, but a new study suggests there may be a flip side to taking care of someone you love as they age -- a decreased risk of death.
"We found that caregivers who spent an average of 14 or more hours a week caregiving lived longer and reduced their risk of dying by about half," said study author Stephanie Brown, an assistant professor in internal medicine at the University of Michigan in Ann Arbor. She added that even after they controlled the data to account for things such as age or previous illness, "there was about a 36 percent reduced risk of dying in the seven-year time period."
Results of the study were published in the current issue of Psychological Science. The study included 1,688 couples who lived on their own, not in assisted living or a nursing home. All of the study participants were over 70.
The researchers gathered health and demographic information as well as information on how much each spouse helped the other with normal activities of daily living, such as eating, dressing, managing money and taking medications. Eighty-one percent received no help at all with their daily tasks, while 9 percent said they received less than 14 hours a week of help from their spouse. Ten percent reported receiving more than 14 hours a week of help from their spouse. Over the seven-year study, 27 percent of the study volunteers died.
When the researchers analyzed the data and controlled for factors such as age, race, gender, education level and net worth, they found that providing care for your spouse for more than 14 hours a week was associated with a significantly decreased risk of death compared to those who provided no spousal caregiving.
"Other studies caution against caregiving, but our study suggests that the actual act of caretaking may not be harmful," said Brown. "This study shows that the burden of caregiving can sometimes be lightly born," said Dr. Gary Kennedy, director of geriatric psychiatry at Montefiore Medical Center in New York City. But, he said that the results might be different depending on the type of care a spouse has to provide. Taking care of someone with early-stage Alzheimer's disease, who can still function fairly well and still behaves normally for the most part is much different from taking care of someone in the middle stages of the disease, who may be aggressive or may not sleep well.
Brown believes that the decreased risk of death comes from physiological benefits from caregiving instead of psychological ones. The authors suggest that stress regulation may play a role in this benefit. Helping others is associated with a release of oxytocin, a hormone that may help buffer the effects of stress, Brown explained. Kennedy said the survival benefit is likely caused by both physiological and psychological factors... Plus, he said, having a partner to care for provides structure and a sense of purpose." (Serena Gordon)
Most articles and studies discuss the stress caregivers face and how it affects their health. The stress of caregiving is often triggered by one's feelings...feelings of guilt, anger, frustration, and sadness. It is very important for caregivers to take CARE of themselves! Take a break, ask for help, use community resoucres and respite care options, utilize other family members, set realistic goals, see your primary care physician (take care of your physical and emotional health), say no to additional tasks, and keep a sense of humor. For more information on caregivers and stress, check out the National Women's Health Information Center.
I bet you don't think of a contemporary style nursing home when you hear the words "green houses?" Green House homes are small homes that are designed to accommodate up to 12 seniors. These homes provide nursing care and clinical support in a home-like environment while maintaining a sense of well-being and quality of life for the residents. Green House homes are designed to look like a private residence, with additional bedrooms so each resident has their own. The living room, dining room, and kitchen are all shared quarters. The staff eat all meals with the residents, and families are encouraged to join in as well. The philosophy is to provide good medical care and improve or sustain a quality of life through person-centered care. Currently, there are 10 states participating in the Green House initiative. The Robert Wood Johnson Foundation provides grant funding for the initiative. Green House homes are developed and operated by long-term care organizations in partnership with The Green House Project and NCB Capital Impact.I really like the concept of "treating the person" not the disease. Of course, people's medical conditions should be addressed but we shouldn't let our residential facilities get stuck in the rut of just taking care of people medically. I once worked for a nursing home that could house over 200 residents, and I worked with some great staff members who really focused on "treating the person." So, while a smaller residential home might provide more of an opportunity for staff to provide more personal attention, overall I think it all of our responsibility as caregivers to provide the utmost care and quality of life for our seniors.
The bottom line is that my Mother suffers each time staff turns over. Caregivers suffer too, as they are concerned about lapses in care and frustrated by dealing with the same issues over and over. It doesn’t seem that it should be that difficult to get the laundry done….esp. when the facility is charging $5K a month.
Turnover is a problem for everyone. Number one – it impacts care. Number two – it is time consuming to constantly readdress the same issues. Number three – it can’t help but influence staff morale which can affect actions and attitudes during daily resident interactions.
Based on our experience, I would definitely ask questions about management and staff turnover when touring Assisted Living Facilities or other senior residences. If the number seems high, think seriously about how this will affect your parent’s care and well-being. The most beautiful building in the world won’t make up for a breakdown in staff communication, training and service delivery.
"Caring for an older adult can be rewarding and fulfilling but can also place great physical, emotional and financial demands on those who take care of them. In fact, a recent issue of the Journal of Immunology compared Alzheimer’s caregivers to non-caregivers, finding that caregivers aged between four and eight years faster than non-caregivers. In light of these statistics, and in recognition of November as both National Alzheimer's Disease Awareness Month and National Family Caregivers Month, the American Occupational Therapy Association (AOTA) is offering tips for caring for the adult caregiver.
Research recently published in the American Journal of Geriatric Psychiatry tested an occupational therapy home intervention, the Tailored Activity Program (TAP), that systematically evaluates and tailors activities to individual capabilities and trains families in setting up and using activities in daily care. TAP reduced behaviors that trigger nursing home placement and the amount of time families spent supervising and providing care.
“Our research shows that occupational therapists play a critical role in the care of individuals with dementia and their family caregivers,” said Laura N. Gitlin, Ph.D., director of the Jefferson Center for Applied Research on Aging and Health and professor in the Department of Occupational Therapy at Thomas Jefferson University. “Occupational therapy practitioners are uniquely qualified to evaluate individual capabilities, engage individuals with dementia in activities, help families learn specific communication, task and environmental simplification strategies and to take care of themselves.”
Laurel Cargill Radley, MS, OTR, associate director of professional affairs at AOTA, adds, “Occupational therapists can help individuals and their families promote or maximize independence, safety and function.”
Occupational therapy practitioners recommend adult caregivers:
1. Join a therapy or discussion group for caregivers of older adults.
2. Share the responsibility of caring for an older adult.
3. Ask others for help.
4. Develop a schedule that distributes caregiving responsibility.
5. Consider adult daycare or home health aides to provide occasional breaks to full-time caregivers.
6. Create moments of joy throughout the day by participating in pleasurable activities.
Additional caregiver resources can be found on the Centers for Medicare&Medicaid Services’ (CMS) new Web site, http://www.medicare.gov/caregivers/.
Founded in 1917, the American Occupational Therapy Association (AOTA) represents the interests and concerns of more than 36,000 occupational therapists, assistants and students nationwide. The Association educates the public and advances the profession of occupational therapy by providing resources, setting standards including accreditations and serving as an advocate to improve health care. Based in Bethesda, Md., AOTA’s major programs and activities are directed toward promoting the professional development of its members and assuring consumer access to quality services so patients can maximize their individual potential. For more information, go to http://www.aota.org/."
This article was originally published by the American Occupational Therapy Association.
In addition to caregivers having to shoulder the work load of the growing senior population, they are also naturally more engaged in caring for aging parents than health providers for most time their parents face the challenges of aging.
If you create a "smoothed" picture of the health challenges faced by older adults, you get a continuum like the one shown below.
The health care providers only intersect with the caregiving need at the green arrows for acute or assistive care. The vast majority of the continuum is addressed by family caregivers who are typically not trained health professionals. These caregivers need support tools and services to provide the best quality of life for their parents and themselves.
Eric Tinsley
Alan Stanford 
Jean Bandos
Karen Kelsey
Natalie Crohn
George Slater
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