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Lincoln

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by Jonathan Rosenfeld
At some point, most Alzheimer’s patients will spend time in a nursing home or assisted living facility.  Whether, the stay is a temporary or permanent in nature, the special needs of Alzheimer’s patients must be recognized and evaluated before the person is placed into a nursing home environment.  There are no specific nursing home regulations in place for people with Alzheimer’s and dementia.  Consequently, the burden of selecting an appropriate facility falls squarely on the shoulders of the family or close friends.  The following is general ‘game plan’ that can be used by families of people with Alzheimer’s, dementia or traumatic brain injury to aid in the selection of a temporary or permanent nursing home.

Before any change in living arrangements is contemplated, a complete physical and mental assessment of you loved one should be completed.  A candid discussion of the individuals needs should be done in the presence of the family and caregivers.  Try to decide what the person is really capable of an in what areas the person needs assistance. Honesty is crucial.  An open and honest discussion will help with the selection of a facility, but will also help the staff at the facility a baseline get an idea of your loved one’s needs.

Initial selection of a nursing home or long-term care facility for an Alzheimer’s patient is no different from the selection of a nursing home for a non-Alzheimer’s patient.  The first step is to do some research about the facilities via friends or on the internet. You can see on-line where the facilities are located and what services they offer.

After conducting some initial fact gathering about the facilities, a visit to the facility is a must.  Do not risk the safety and happiness of your loved one at a facility without physically visiting the facility. Before deciding on a facility at least two visits are in order.  The first visit should be a scheduled visit to get a tour from the staff.  If the initial visit passes muster, a second unannounced visit should be made.  The second visit will likely be more telling than a carefully coordinately tour.  Do not hesitate to talk with the staff during your visits.  You can learn a lot about the facility depending on their attitude and demeanor.  Unhappy staff is usually indicative of unhappy residents.

Unlike most nursing homes that care for the elderly, nursing homes that care for Alzheimer’s patients and those suffering from a brain injury needs to take precaution to reduce the risk of residents harming themselves and others.  Nursing homes for Alzheimer’s patients should have specialized design considerations to help ensure the individual’s safety and happiness.  Facilities should:

-    Place restrictions on in-and-out privileges for residents.  Safeguards to prevent elopement —common sources of injury to Alzheimer’s residents.
-    Require each visitor to sign in.  Mentally impaired residents are disproportionately physically and sexually abused compared with the general nursing home population.
-    Bracelets and alarms.  Does the facility have a tracking system or alarm for residents who have a tendency to wander?  Depending on the mobility of the individual, a surveillance bracelet should be used to keep track of the person.
-    The facility should have clearly marked walkways inside and outsides the facilities. The walkways should be well lit, have directional signage with diagrams as opposed to written diagrams.
-    Have a circular configuration. Alzheimer’s patients get particularly frustrated when encountered by dead-ends and right angles.

Staffing Is The #1 Consideration

‘Does the facility regularly handle people with Alzheimer’s?’  This is an important question to ask, because the most important factor in your loved ones happiness and safety will be dependent on how much experience the facility has in dealing with Alzheimer’s patients.  Seek out a facility that focuses exclusively on Alzheimer’s care or has a specialized unit for residents with Alzheimer’s. If the facility houses both Alzheimer’s and non-Alzheimer’s patients, precautions should be in place to control both groups access to the other.  Though it may seem segregationalist, depending on the level of functionality, most Alzheimer’s patients should be kept together for their own safety.

Most incidents involving nursing home injury occur due to staffing problems.  Don’t be afraid to ask some or all of the following:

-    Does the facility require / provide any specialized Alzheimer’s training for the staff?
-    Does the facility do backgrounds checks on all employees?
-    What is the policy for alerting a family member to an incident?
-    What is the policy for physical and / or drug restraints?
-    What is the facilities toileting policy? Are diapers changed regularly or does the facility only change on a schedule?
-    How does the facility ensure that resident’s eat?  Do they have staff to monitor what is and is not eaten?
-    What is the resident / staff ratio?  A general rule is 1:6 for staffing during the day.

Jonathan Rosenfeld is a lawyer in Chicago that concentrates his practice in representation of victims of nursing home abuse and neglect throughout the country.  Jonathan author’s the Chicago Nursing Home Lawyer blog.  The blog contains information useful to families of nursing home residents and attempts to answer many frequently encountered questions regarding nursing homes and assisted living facilities. Jonathan is available to discuss all aspects of nursing home care.  You may reach him at rosenfeld@strellislaw.com or toll-free (888) 424-5757.

by Lincoln N.

With declining fertility rates and an increased longevity of chronic illness, the boomer generation is facing a huge problem. The typical 45-55 year old woman now spends more time taking care of their parents than they are rearing their children. The “typical” woman works full time and spends 18 hours per week taking care of their 78-year-old mother. One husband and wife couple explains that they have two children, three living parents, a stepparent and a living grandparent for a total of two children to five parents. This case is not unusual for the modern baby boom generation. With common instances of double-decker families, families with four generations of people, the caregiving crunch is definitely going to take its toll for the sandwich generation. Nearly a quarter of all caregiving households provide more than 40 hours of unpaid, informal care to their elders.

Today’s eldercare-givers are mostly women; an estimated 73 percent are women. An estimated 75% of women from the ages of 45-55 are now in the workforce compared to just 40 percent in the year 1950. To complicate the matters even further, 40 percent of these women have children under the age of 18 that rely on them financially. This leads the modern elder-caregiver to juggle work, rearing children, and the huge task of eldercare.

The fact is, the average American in the 21st century will spend more years taking care of their parents than rearing their children. In a report by the AARP, nearly half of all caregivers said that had to alter their work schedules, by taking time off of work or rescheduling their days to accommodate eldercare giving. The AARP study also found that some 12 percent of eldercare givers had to leave work altogether to tend to their parents. For corporations, this leads to an ever-increasing amount of absenteeism and unexpected labor shortages.

As Americans decide to have fewer children, there is a gap in the amount of people left to take care of them when they are older. Today’s elder generation had an average of four children per household compared to today’s boomer generation that has only two children per household.

These problems ultimately, lead to the need for more long-term care initiatives and options for our sandwich generation. Programs such as Independent Living Center and home health agencies are offering services to connect people with affordable home health aides. ConnectingCaregivers.com is also unveiling a service in the coming months to give families a list of prescreened home health aides in their local area to choose from.

The end of life. Who wants to think about that? Not me. Where exactly do we go? It’s hard not to wonder why my dear old grandfather, the once brilliant scientist, can’t manage to shoot me even the remotest signal from wherever he is now (and I’m sure it’s a good place).  Just a little one.even Tim Russert managed to toss a rainbow over the Kennedy Center after his memorial service.

We hate the idea of dying. Poof, we’re gone. So it’s no wonder that caregivers and their recipients are nervous about having the end-of-life conversation. But this is so necessary, because death won’t stop to be polite.

Caregivers can empower themselves and their loved one by taking some steps to begin this difficult journey. First, do have the conversation. Help your loved one embrace the idea that it’s okay to explore the meaning behind death and specifically, their unique feelings about their own death. They may choose to record them in a journal or light a candle and simply meditate about the purpose of their life. Invite a priest, rabbi, minister or other spiritual leader to mentor your loved one as they approach this stage of life. They need to have the courage to ask the tough questions: What kind of funeral service do I want? What kind of medical treatment do I want? Do I want to be buried? How do I interpret my death?

It will also be important to prepare two critical directives: a living will and a health care power of attorney, which enables care recipients to appoint someone they trust to act on their behalf and make decisions about their medical treatment if they no longer can do so.

Other issues to consider include legal issues, dealing with symptoms, managing pain and hospice care. Many people understand what hospice care is-round the clock end-of-life care provided by a team of professionals-but think they will not be able to afford it. This isn’t necessarily true. Medicare usually pays and Medicaid pays in 43 states. Many other types of health plans, including Health Maintenance Organizations (HMOs) and Preferred Provider Organizations (Pops), cover the costs of hospice care. Those who lack insurance and do not qualify for Medicare/Medicaid may also be able to access hospice, as a lot of hospice programs will offer their services for free.

Finally, to examine your own feelings as a caregiver who must hold the hand of your loved one through this important journey, you may want to check out a classic book on the subject, called On Death and Dying by Elisabeth Kübler Ross, M.D. Ross leaves few stones unturned as she gracefully walks the reader through the sensitive issues associated with this stage.

For more information, visit: AARP
Also, the National Hospice and Palliative Care Organization (703-837-1500) and the Hospice Foundation of America (800-854- 3402) may offer you support. According to AARP, these organizations have databases of hospice programs located throughout America to facilitate your search.

1.)    Understand that Medicaid is a state run program, different from Medicare, which is federal. The guidelines are different from state to state. Eligibility requirements and applications processes are different with every state.
2.)    Understand that if you qualify for Supplemental Security Income (SSI), there’s a good chance you qualify for Medicaid
3.)    Recognize there have been recent limit changes to Medicaid benefits at the federal level
4.)    Contact your local human services or State Department. Different states have different names for these agencies. Contact your county building to find out the name of these services. They are the one in charge of food stamps and financial assistance.
5.)    Complete a Medicaid Application in the office.
6.)    Make sure to bring your birth certificate, driver’s license, social security card, proof of residence, information regarding bank accounts, and proof of insurance if you have it.
7.)    Be prepared to answer questions on personal finance. Medicaid is based on your family income level.
8.)    Ask office personnel if you need assistance in filling out the form.
9.)    Be honest in filling out the form
10.) Contact an elder law attorney if you are planning to seek aid for nursing homes.

If you are seeking financial aid for home health care, there are new initiatives being offered in specific states including New Jersey, Florida, and Arkansas called “Cash and Counseling” that provide money directly to the beneficiaries giving them direct control over how the money is spent. More often than not, Medicaid funding goes directly to the providers and beneficiaries do not have much control in how the money is spent.

PS:    For a FREE e-book on “Home Health Aides” and more valuable information on applying for medicaid please click here .

My mother had entered a nursing home, the one where my dad already lived, be-cause of chronic falls and a failing mind. She spent over seven years there. Over time, her severe arthritis had devoured her joints. Though she’d had hip replacements years earlier, she had used a walker for years. As the years in the home went by, her pain became more difficult to manage. Her knees ground bone on bone. Her wrists were knots, her fingers gnarled. Her spine cracked with each move. She weighed less than 90 pounds. Eventu-ally, her pain was unbearable and it was clear that, five months after my dad’s death, she had no will to go on. Hospice, God bless them, was finally allowed to manage her pain.
During her death process, my sister and I kept cheering her on. Dad was waiting! Her sisters and parents were waiting! Go, Mom, go! Likely, anyone walking by her room thought we’d finally lost it. But the reality was – she had no quality of life left. She was ready to go. Grief? Yes. But, relief, as well.
And why wouldn’t we feel that way? Could we possibly not see her suffering? Could we possibly think she should go on, so we wouldn’t “lose” our mother? Our mother was fading away before our eyes, in a very painful manner. The medications were not enough to ease her suffering. Only death could do that. And – finally – death did.
A jumble of emotions will always be associated with my parent’s death. I miss them. I wish they could read my column and see “Minding Our Elders: Caregivers Share Their Personal Stories” as a published book. I wish they could, see, hear and read my interviews. I can be angry that they had to suffer long, slow deaths, if I choose to dwell on that. I do feel grief. But one emotion I don’t have is guilt for feeling relief that their suffering has ended. For that I am grateful.

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. Carol’s column, “Minding Our Elders,” runs weekly, she speaks at many caregiver workshops and conferences and has been interviewed by national radio, newspapers and magazines. Carol is also the moderator of the AgingCare.com forum.

A friend called me this week, very upset about her mother’s ill health. Of most concern was the intense, unrelenting pain her mother was experiencing. My friend was distressed about not being able to do more to relieve her mother’s pain, despite being a nurse. She had done what she could and had monitored her mother’s care, but still the pain continued. My friend was preoccupied with worry about the situation and was taking on her mother’s pain as if it were hers. She was feeling miserable.

As we spoke, I reminded my friend that while her care and compassion were understandable – and admirable, her own high state of distress was neither helpful to her mother nor good for her own fragile health.  “Your mother’s pain is hers, not yours,” I told her. “While you can offer her care and support, the pain is hers alone to have. Your taking it on too will not lessen what she feels.” When I said that, she sighed a deep sigh. She had felt that she needed to be suffering since her mother was. When she realized that taking on the burden of her mother’s pain was totally unproductive, she was able to let it go.

My friend was almost surprised when she realized how miserable she had made herself by taking on this pain that didn’t belong to her. It had weakened her and made her less able to give her mother what she needed – strength along with compassion, confidence along with care.

I have run across this dilemma many times in my work with caregivers. That’s why I wrote about this very topic in my book Daily Comforts for Caregivers, suggesting that the caregiver “give up noble suffering in exchange for sanity.” At the end of this section, I add these words that caregivers can use to remind themselves of this perspective: “My job is not to suffer but to care for my loved one and for myself.”

Speaker, Author, Educator
Creative Aging
763-560-5199
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