Suzy Murphy debra levy

special contribution by Susy Elder Murphy, BA, CMC
owner, Debra Levy Eldercare Associates

One of the most difficult decisions that any family faces is making the decision about when, or if, moving a family member to assisted living is the right thing to do. As Aging Life Care™ Managers, this is often when we are called on, whether to schedule an office consult with concerned adult children to discuss options or to meet with a spouse in their home and assess whether or not their husband or wife can still be safely cared for there. It is nearly always an emotionally fraught decision. Sometimes adult children promised their parents that they would “never put them in a home,” whatever that may mean in today’s world where some skilled nursing facilities actually more closely resemble a Hilton Garden Inn with nurses, and long before being faced with the realities of a difficult diagnosis, such as Lewy Body Dementia. When I meet with couples who may have been married for 60 years or more, they are often wracked with guilt because they feel that they have in some way not fulfilled their wedding vows to care for their spouse “in sickness and in health,” promises made decades before the diagnosis of a chronic and progressive illness such as Parkinson’s Disease has begun to take its toll on the strongest of marital bonds.

I give talks on this subject at assisted living communities in our area and they are always well-attended by adult children and spouses who have the same questions for me: What are the options and how can we afford to pay for this care? More of us have long term care insurance which may cover most or even all of the cost of care, but many families are dipping into hard-earned savings, or looking to government benefits to help cover the costs. I recently met with a brother and sister who live in this area and were concerned about their parents who live in Florida. They began trying to look at different communities on their own and quickly realized that they needed the guidance of an Aging Life Care Manager to help them understand the alphabet soup of categories of care that their aging parents might need. As members of the Aging Life Care Association (ALCA), we do not have a financial relationship with any community or resource that we refer our clients to, and our recommendations are based on our clients’ needs and our experience in the geographic area we serve.

To use the “Smith” family as an example, mom is age 85 and takes a few medications for chronic conditions such as hypertension and thyroid imbalance, but has had noticeable memory loss for the last several years. Dad, 89, also has some memory issues, but has also recently been diagnosed with congestive heart failure, including a hospitalization to treat that condition. Mom and Dad are both happy in Florida and have some extended family there, as well as many friends and activities they enjoy, although both of their adult children live here. “Don” and “Amy” wanted to know if they should continue to travel back and forth to Florida to deal with intermittent health crises such as their dad’s recent hospitalization, or, whether it would be better to bring their parents closer to them here.

We began with a discussion of finances. The Smiths have modest income of about $3500 per month, and are not eligible for the Aid & Attendance benefit through the VA, since neither parent served in the military. They have savings of about $50,000 and a condo worth about $100,000, which is fully paid off. They currently live within their means and cover their out of pocket medical expenses and living expenses out of their monthly income, usually with some left over at the end of the month. My first suggestion was that they get a more comprehensive assessment of their parents’ medical condition, particularly their dad’s congestive heart failure and their mom’s memory impairment. They plan to have a comprehensive assessment by a geriatrician of both of their parents, and I was able to refer them to an ALCA member in Florida who could assess how they are actually functioning at home. My colleague in Florida could assess if their memory issues are causing them to forget to take medication, compounding their other medical issues, and also identify what local resources they could tap into to support their continued care in their familiar home as an option that might be sustainable for another year or two.

At the same time, we explored different housing options in this area. I suggested that they look at communities that offer independent living (a private apartment with a full kitchen and a congregate dining meal plan of 1 -3 meals daily and weekly housekeeping) with the possibility of a subsidy, as well as the availability of ala carte services such as medication management, and assistance with bathing, as a way to stretch their savings out for as long as possible. Some of these communities also offer assisted living options (a private apartment but with only a kitchenette and 3 meals and snacks daily, as well as weekly housekeeping and laundry) with more comprehensive nursing oversight, as well as possible subsidies. In the event that one of them needs skilled nursing care, possibly Mr. Smith due to his advanced age and congestive heart failure diagnosis, I explained how Medicaid would come into play to pay for most of his care, and referred them to an elder law attorney who specializes in Medicaid for additional guidance. In the event that Mr. Smith predeceases Mrs. Smith, we also explored the possibility of a small group home to meet her care needs, due to her memory deficits and the strong possibility that she might have early to mid-stage dementia. Group homes offer private bedrooms, shared meals in a communal dining room and a less institutional setting than a skilled nursing facility, for about half the cost.

At the end of our 90 minute meeting, Don and Amy had a short list of communities near their homes in the metro DC area that could meet their parents’ medical and financial needs, as well as a referral to the Aging Life Care Manager in Florida to help them understand what options are available to their parents there, as well as to get a more complete assessment of their needs. We will remain in touch as they explore the options and, as a family, make the decision about when it is time to move their parents.

Susy Elder Murphy is the owner of Debra Levy Eldercare Associates, an independently owned and operated Aging Life Care Management practice founded in 1988. She is also President of the Mid-Atlantic Chapter of the Aging Life Care Association. She can be reached at smurphy@care-manager.com

David Letterman was famous for his Top 10 lists on his late-night television show. Most of them often brought a chuckle, while some were downright awful. But what Mr. Letterman understood was the power of creating an easy-to-remember list that could be recited the next day at lunch or around the water cooler at work.

We’ve created such a Top 10 list, but it’s not intended to make you laugh. It is intended to be memorable and frequently discussed with your loved ones. While you may not want to recognize one or more of the signs on this list because to do so would be to admit that your aging parents need some help at home, it’s vitally important that you know what to look for so you can act before an accident happens.

Here is the list: 10 Signs Your Elderly Parent Needs Help at Home

  1. Stacks of unopened mail or unread newspapers and magazines
  2. Spoiled food in the refrigerator
  3. Empty pantry and cupboards
  4. Declining personal hygiene (body odor, unkempt hair, unbrushed teeth)
  5. Mood swings and unexplained changes in mood
  6. Lack of interest in hobbies, reading, and conversation
  7. A strong smell of urine in the house
  8. Piles of dirty laundry and beds without sheets or blankets
  9. Difficulties with standing, walking, or mobility
  10. Forgetfulness beyond a simple “senior moment”

If you’ve noticed one or a combination of the above signs, then it may be time to start the conversation about next steps for your aging loved one. Many options ranging from part-time home care aides to assisted-living facilities are available. There are many ways to help you protect your elderly parent when you notice the signs. This list of indicators is a place to start.

 

Special contribution from Barbara Kane, LCSW-C and Linda Hill, LCSW-C, of Aging Network Services

As geriatric social workers, we work with adult brothers and sisters who are caring for their aging parents. They are often reengaging with one another in very intense circumstances, sometimes after decades of being focused more on their own families than on their family of origin.  The stakes are usually high, as can be the associated emotions and opinions about how to best help their parents. As they sit in our Bethesda office, sometimes with one or two siblings on a conference call, they may silently wonder whether they are even going to continue a sibling relationship once this last parent dies. The process is never easy, but once we have a plan of care in place, siblings frequently look at one another with a rush of gratitude and maybe even a new respect.

Coordinating care for aging and ill parents is difficult for many adult siblings and frequently reawakens old wounds and conflicts. The presenting problem is not the sibling relationship; it is the effective care of the aging parents. Still, working to resolve issues related to taking care of their parents may offer siblings a fresh opportunity to resolve past conflicts.

Division of Roles

We often find that discussing roles and responsibilities is an opportunity to coach siblings on how they can work together more effectively. In a consultation, we may interrupt them to show healthier ways of communicating, both listening and talking. With siblings, we point out that each has different temperaments. We work to help them acknowledge and respect these complementary differences and the strengths of both.

After a couple of sibling sessions with the help of our coaching, we advise siblings to continue these meetings on a regular basis themselves.  Perhaps monthly meetings which they can regard as care planning discussions or business meetings is a good way to check in with each other.

Here are some questions that siblings may use to guide them in their discussions:

  • Do you feel that I have been doing enough?
  • Do you feel that I have been doing too much?
  • Is there anything that I have said or emailed over the last month that bothered you?
  • Do you feel that I have asked you for approval for big care decisions during the last month?
  • Do we need to revise our division of labor?
  • Do you feel I have been respectful of you in tone and action?
  • Have we communicated enough over the last month?
  • Are any old wounds festering?
  • Overall, how do you feel we are doing as a team?

It may seem that monthly meetings are not necessary.  But even if the aging parent is quite stable, sibling relationships need to remain on an even keel throughout this journey of caregiving.  Many families are split by geographical distance and it is often the out of town sibling who has the harder time with feeling out of the circle of care. These meetings, even over the phone, can go a long way towards keeping all the siblings feeling good about each other and the work they are doing together.

For this may be the last time that adult siblings have such a profound reason to come together.

While memory impairment is often what comes to mind when one thinks of Dementia, agitation is what most often causes my phone to ring with a request for an evaluation. Behavioral changes, paranoid delusions, hallucinations and long periods of screaming were described by the psychiatrist Alois Alzheimer, for whom Alzheimer’s Disease is named, in 1907 in his original case description of the disease nearly 100 years ago. ‘Agitation’ is a term that is most often used to describe a wide variety of behavioral symptoms seen in patients with dementia. The medical term used to describe these symptoms is the Behavioral and Psychiatric Symptoms of Dementia, or BPSD for short.

It is estimated that BPSD affects up to 90% of all individuals with dementia over the course of their illness, and is independently associated with poor outcomes, including distress among patients and caregivers, long-term hospitalization, misuse of medication, and increased health care costs.

There are several categories of BPSD, these include:

  • Disturbances of emotional experience such as mood lability, depression, anxiety, irritability/hostility, apathy, and crying spells.
  • Psychotic experiences including delusions, hallucinations, and paranoia.
  • Sleep Disturbances such as sleeping excessively, waking up frequently, sleepwalking and its related conditions.
  • Appetite Disturbance can manifest as low to non-existent appetite and weight loss, excessive appetite/demands for food, and ingestion of non-edible substances.
  • Disinhibited Behaviors include wandering (present in about 25% of patients with Alzheimer’s), yelling (seen is 25% of Nursing Home residents), excessive talking, inappropriate sexual behaviors, and hypermetamorphosis (the need to touch, and sometimes hoard, every object in sight).
  • Personality changes can manifest both as acting in atypical ways as well as experiencing a ‘distillation’ of the personality so that the person behaves as a caricature of themselves.
  • Uncooperative behaviors are most often related to personal care such as bathing, dressing, taking medications, and grooming activities.
  • Certain behaviors can be more commonly associated with different types of Dementia. For example, hallucinations can be a prominent feature of Lewy-Body Dementia, and Complex Sleep Related Behavioral Disorder is often associated with Parkinson’s Dementia, and changes in personality can be the first symptoms of Fronto-Temporal Dementia.

While these behaviors are often manifestations of the underlying brain damage caused by dementia, they are sometimes related to co-occurring medical conditions which should be evaluated as part of an assessment of BPSD. These include things such as urinary tract infections, vitamin deficiencies, thyroid abnormalities, diabetes, kidney and liver function, and pain syndromes.

Assessment of BPSD begins with a thorough evaluation consisting of gathering information from multiple sources to learn not only about the onset and evolution of the BPAD and underlying dementia, but also a detailed assessment of medical conditions, all medications being taken by the individual, as well as an assessment of the possible contributors/triggers of the BPSD from the living environment.

Improvement of BPSD is often achieved through a combination of adjustments in medication, treatment of any underlying medical conditions, and modification of the individual’s environment/caregiver approach. Because there are so many different types of agitation and because each patient’s background, life story, medical issues, and temperament are unique, an individualized approach that takes all of these variables into account is most likely to be successful.

Dr.Nicholas Schor

Dr.Nicholas Schor,M.D Address