Knowing When to Say When: Dementia Care Placement

One of the most difficult, emotionally trying and even guilt-inducing decisions any geriatric caregiver of a dementia sufferer has to make is deciding when to place that individual in some type of congregate care setting, i.e. assisted living or the dementia area of a skilled nursing center.

Such a decision is never clear-cut as each case is different and has varying circumstances. In some cases it may take months, if not years of emotional wrangling before both the individual with dementia and the caregiver can make the final choice.

Don’t hang your head in despair just yet; there are some generally agreed upon guidelines that exist to help make sense of when to make the decision to place the dementia sufferer outside of the home setting. When reviewing these guidelines, factors such as family finances and family dynamics should also be taken into account.

Dementia Care Placement Triggers

Let’s first review the factors that can often justify placement for someone with dementia:

1. Caregiver burden/burnout

When a spouse, loved one, or other sandwich generation caregiver provides the primary or in some cases sole care for someone with dementia, it can understandably take a huge physical and psychological toll, especially when the care lasts for several years. It is not uncommon for the caregiver to develop his/her own health issues or exacerbate existing health issues as a result of caring for the individual with dementia. Unfortunately, many caregivers act selflessly by ignoring their own health concerns until they push themselves to the brink or a crisis occurs and they can no longer realistically take care of their loved one at home. The goal in avoiding this kind of crisis is for the caregiver to recognize when he/she can no longer care for the person and be honest enough to admit it to him/herself. Unfortunately, many caregivers need others to intercede before they will admit it is time and even then feelings of guilt can delay the decision further. See Recognizing the Signs of Caregiver Burnout

2. Wandering/Elopement

A number of dementia sufferers develop a habit of wandering away from their residence. Despite caregivers best efforts, people with dementia will find a way to elope if they really want to without understanding the risks involved. Once these episodes occur more frequently and are accompanied by the need to have police and other emergency authorities involved to assure the person’s safe return or in worse-case scenario situations where the individual with dementia suffers injuries as a result of the elopement, then it is fairly clear that this person needs to be in a more secure environment to minimize these risks and insure his/her safety.

3. Incontinence

Incontinence of bladder or bowel can often be addressed by family caregivers without significant difficulty, however, once the incontinence reaches a less predictable and manageable state, the burden of constant changes and accidents can weigh heavily on the physical care of the individual for the caregiver. Repeated unpredictable episodes of incontinence can be the basis for added stress on the caregiver and can trigger dramatic moments of desperation and tension in the relationship. These are the type of “breaking points” that can lead a caregiver much further toward making the decision to place his/her loved one in a community setting.

4. Physical/Verbal Abuse

While it is difficult to think about and even more difficult to articulate to others, physical and verbal abuse can occur on both sides of the dementia caregiving relationship. With stress levels being high many times, unintended incidents can occur that one party or the other regrets. In the case of the person with dementia, these behaviors can almost always be attributed to the disease. Nevertheless, they can create an untenable and, in some cases unsafe, situation for the caregiver, especially if these behaviors are repeated and not adequately addressed otherwise.

Possible Solutions for Care Placement Triggers

For each of the four placement trigger factors mentioned above, solutions can be found if the strong desire is to keep the person with dementia at home as long as possible, and in at least the first three cases, resources are available to support that decision:

  • Caregiver burden/burnout: If the financial resources are available, caregivers can find support through various sources including hiring private geriatric case managers to assist in care and also utilizing resources that might be available in the community such as dementia day care services. If possible, family and friends can be included to assist in the caregiving role on a scheduled basis to give the primary caregiver some relief.
  • Wandering/Elopement: Some caregivers have gone to the trouble of changing their home door locks as well as incorporating more recent developments in at-home dementia care including the use of wander guards for their loved ones (that will track their whereabouts) and other GPS-type devices that can pinpoint a person’s whereabouts should he/she get lost. Depending on the family’s financial circumstances, this may be a relatively inexpensive way to address the problem.
  • Incontinence: As is the case with caregiver burden, additional resources though paid geriatric care management or friends and family may be sufficient to help ease the stress of this aspect of the disease for the primary caregiver. This can sometimes make the difference for caregivers who are feeling overwhelmed by their responsibilities.
  • Physical/Verbal abuse: If these types of behaviors are occurring regularly or even more than once, it is unlikely that the home situation can be resolved, even with the addition of support resources. Medications may be added or adjusted by the doctors involved to assist in minimizing these events for the person with dementia. However, the reality is that some dysfunctional family dynamics do continue to occur for various reasons including limited financial resources or lack of knowledge about the disease and also the possibility of qualifying for alternate living arrangements, most often in the form of Medicaid spend-downs.

Geriatric Care ManagementIn most cases the strong preference among families is to keep their loved one at home for as long as possible. However, once the dementia reaches a certain point or stage of the disease, the advantages of keeping someone at home can begin to lessen and the advantages of placing him/her in an appropriate congregate care community that specializes in dementia care increase.

In the next installment of this blog topic, we will outline and discuss the steps and aspects involved once the decision is made for placement. For many, these steps place them in “uncharted waters” that can be made easier with some basic information about how the process works.

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Authored by Scott Tolan, Care Manager & Guardian Representative

Scott works with clients on a one-on-one basis to meet their needs and help them maintain a level of independence and dignity appropriate to them. His primary area of expertise is dementia and dealing with individuals with memory impairment. He has worked with clients and family members in various settings, including assisted living, skilled nursing, home care, and hospice.

Scott has completed advanced training and certification for special care/dementia unit directors that focuses on an activity-based approach in working with dementia residents. He has also facilitated several support groups for family members of those with memory impairment.

5 Geriatric Care Management Tips for the Sandwich Generation

The Sandwich Generation refers to a generation of people who are caring for their aging parents while supporting their own children. If you’re a caregiver in this generation you might liken the associated financial and emotional stress with the feeling of being “sandwiched” between the two responsibilities that are taking up most of your time.

Sandwich generation providers can create a care management sandwich that meets their needs and the needs of their aging parent(s) through effective planning, support, and advocacy.

5 crucial ingredients for a balanced care management sandwich:

  • Emotional well-being
  • Financial Planning
  • Healthcare
  • Career
  • Family

1. Emotional Well-being

For those taking on the greatest time commitment for providing care for an aging parent or parents and also trying to fulfill their own parenting obligations, finding time for self is an important part of maintaining balance in life. Caregiver burnout can seriously impact your quality of life and your ability to continue caring for your loved ones. It is essential that you carve out some time for yourself every day to do something for yourself. It might be a session at the gym, coffee with a friend, reading a book, or any activity that recharges your emotional batteries.

2. Financial Planning

Perhaps one of the biggest contributors to sandwich generation caregiver stress is managing the costs associated with raising children and maintaining the health of aging parents.

To help ease the financial burden talk to your family members and involve them in the financial planning process. Assess all of your financial resources and create separate accounts with allocated budgets for long-term care management and day-to-day expenses for the whole family. If this task seems too overwhelming, seek the help of a Certified Financial Planner that deals with long term care planning. Contact us to help find a specialist that meets your needs.

3. Healthcare

As your parents age, medical issues are likely to arise. Advance planning for possible physical and mental healthcare issues is key to effectively managing them. It is helpful for caregivers to visit and evaluate several long-term care facilities well ahead of the need for placement. Understand that institutionalization may be a normal progression in the process. Encourage the completion of a Durable Power of Attorney for Health Care form or an Advance Health Directive for Dementia in the event of your aging parent(s) being unable to make healthcare decisions for themselves at a later stage. Also see: Practical Advice on Caring For a Parent with Dementia5-step Geriatric Care Management Plan for Dementia Patients and the Families Caring for Them

Part of your planning should also include ways of keeping your aging parent(s) active. Involve them, as far as possible, in the day-to-day chores in the household and plan simple mental and physical activities like reading to the children, doing a crossword, going for a walk, joining a senior activity group etc.

4. Family

Multiple generations living together in one household can be stressful. There are so many voices that need to be heard, and often not enough time for everyone to have their say. Open, honest family communication is so very important for maintaining household balance. Try and set aside a time, perhaps around the dinner table, for each family member to talk about their day or share a personal experience. Plan a monthly family outing, even it’s in the back yard with a ball. Laugh together as often as you can and learn to sweat the small stuff.

5. Career

Juggling work-life balance is an art that requires a lot of planning and support – from your family and your employers. Don’t be afraid to ask your family members and colleagues for help if you need it, and you probably will. A geriatric care manager can also help you find the care management support and resources you need.

5-Step Geriatric Care Management Plan for Dementia Patients and The Families Caring For Them

Caring for a loved one with dementia comes with a unique set of challenges that often require professional support to effectively manage long-term care. Because dementia is a deteriorating condition, a physician/caregiver/patient relationship is the recommended approach for meeting the needs of elderly patients with dementia.

Follow these 5 steps to plan ahead and find the Geriatric Care Management support you need:

  1. Making sure physicians who are overseeing medical care for your loved one understand your needs as a family caregiver and the challenges you face are essential aspects of caring for the person with dementia. The physician can help caregivers anticipate changes, plan for role transitions, and arrange for education and support that is needed to provide care.
  2. In the earliest stages of the disease, it is helpful for caregivers to identify a health care proxy for the person with dementia. Encourage the completion of a Durable Power of Attorney for Health Care form (your physician should have copies available in their office.) The copy of completed forms becomes part of the patient’s record. (See What is a Health Directive for Dementia? for a downloadable dementia-specific health care form.)
  3. Caregivers need to maintain their personal health and vitality to provide continuing care for the demented patient. Taking the time for self-care will help reduce the chances of Caregiver Burnout (Also see Dementia and Caregiving Challenges).
  4. Caregivers should become familiar early in the illness with adult day-care services and in-home or in-facility respite services.
  5. It is helpful for caregivers to visit and evaluate several long-term care facilities well ahead of the need for placement. Understand that institutionalization may be a normal progression in the process.

Contact us if you need helping finding Geriatric Care Management support and resources.

Mental Illness and Disorganization

In honor of Mental Health Awareness Month this May, I would like to share some information about the link between mental illness and disorganization/hoarding.

Many individuals with mental illnesses also have issues with disorganization. This is primarily because the area of the brain most often affected by mental illness is the Central Executive. The CE is the primary area for planning future actions, initiating retrieval and decision processes, and integrating information coming into the system, all necessary for successfully organizing.

Disorders that can arise from a faulty CE are depression, attention deficit hyperactivity disorder (ADHD), learning disabilities, compulsive disorganization, and hoarding.

To clarify, disorganization is not the same as clutter. Clutter can also be thought of as messiness whereas disorganization is broader. Disorganization is a lack of basic categorization accompanied by excessive clutter.

The Institute for Challenging Disorganization defines chronic disorganization using three criteria: having a past history of disorganization in which self-help efforts to change have failed, an undermining of your current quality of life due to disorganization, and an expectation of future disorganization.

Sometimes, we all suffer from faulty CE functioning, especially where time management, attention and switching focus is concerned. Ways to help CE include: organizing workspace, minimizing clutter, and creating “to do” checklists.

When dealing with your own or someone else’s clutter and disorganization, it’s important to approach with compassion. Staying organized and relatively clutter free is difficult for everyone at some point in time. Compassion will create a nurturing environment in which to learn good organizing skills.

Food for Thought: Why Switching to Veganism Can Be an Invaluable Health Choice for Seniors With Disabilities

Advancing in age also means becoming more vulnerable to a long list of diseases and disabilities. But much like other population groups, the elderly may also enjoy the health benefits of switching to a vegan diet. The topic of aging and veganism is not widely studied but here are some of the ways that senior citizens can be assisted with a balanced diet of vegetables, fruits, grains, legumes, seeds, and nuts.

Improves mobility

The most common issue for seniors is mobility, more so for disabled ones. The latest accurate US Census data showed that two-thirds of the population reported having difficulty in walking or climbing. There are several reasons for this, such as declining bone health, because aging signals a loss of minerals and calcium in the bones.

While there is no guarantee that brittle bones will be reversed by a vegan diet, Harvard School of Public Health notes that calcium, which is important for improving bone density, is better sourced from plants instead of dairy. The latter has been associated with other illnesses that can also affect the ability of seniors to move around such as diabetes, heart conditions, and cancer. A diet rich with a variety of beans, dark leafy vegetables, grains, and fruits will help seniors reach their daily calcium requirements and might even improve their mobility.

Improves eyesight

Improves Eyesight

There are numerous age-related eye health problems that can cause the diminishing or total loss of vision in the elderly such as macular degeneration, cataracts, glaucoma, or diabetic retinopathy. However, BBC News reported that a change in diet can reverse vision impairment that is consistent with aging. Aside from carrots, other types of food to look out for are those that contain three essential chemicals: lutein, zeaxanthin, and meso-zeaxanthin. These macular pigments can be found naturally in plants such as kiwi, bell peppers, kale, spinach, collard greens, corn, and saffron.

Improves hearing

Improves Hearing

Although little evidence can be found between the relationship of food and hearing, there are several claims that suggest a vegan diet can boost hearing among the elderly. Loss of hearing is another disability that plagues the older generation due to wear and tear of the nerve cells around the ears. Eating more potassium-rich foods such as bananas, melons, and apricots can induce cell interaction in the inner ear as well as protect damage to the cells, nerves, and blood vessels. A similar effect can be experienced with a healthy intake of vitamins C, E, and D which can be found in papaya, red bell peppers, kiwi, and broccoli as well as supplements. Additionally, flax and chia seeds, walnuts, olive and coconut oil, and beans will provide the essential omega-3 fatty acids that reduce inflammation in the ears.

Improves brain health

Improves Brain Health

Another topic that merits a deeper investigation is the relationship of food with brain-related illnesses such as Alzheimer’s and dementia, although some evidence of a positive link have been found. Health IQ cited the preliminary findings of a study that examined adults who eat meat and those who don’t. Careful observation led researchers to conclude that those who follow an omnivorous diet are twice as likely to experience the onset of dementia. Living Life With Dignity recognizes that dealing with the condition is equally difficult for the afflicted elderly and those who care for them, which is why finding ways to delay or completely prevent it is a priority.

Seniors and caregivers alike should get informed and consult with a physician before making a decision. The aforementioned benefits still depend on many factors such as the accessibility of plant-based food for the seniors or the intensity of their disability. However, it is never too late for the elderly to take charge of their life by converting to a healthier alternative when it comes to food choices.

The Different Levels of Clutter/Hoarding and How to Recognize Them

Clutter can mean different things for different people. For some, a small pile of clothes in the corner of an otherwise well-ordered room constitutes serious clutter. For others, the clutter might only register when a room in their house becomes inaccessible.

To help us more accurately distinguish the level of the clutter and provide appropriate help, we use the International OCD Foundation Hoarding Centre Clutter Image Rating and The Institute for Challenging Disorganization (ICD) Clutter–Hoarding Scale™ (C–HS™).

Clutter Image Rating

The International OCD Foundation Hoarding Centre created a series of 9 pictures of rooms in various stages of clutter – from completely clutter-free to very severely cluttered. People can just pick out the picture in each sequence that comes closest to the clutter in their own living room, kitchen, and bedroom. In general, clutter that reaches the level of picture # 4 or higher impinges enough on people’s lives that we would encourage them to get help for their hoarding problem.

Example of the International OCD Foundation Hoarding Centre Clutter Image Rating

Example of the International OCD Foundation Hoarding Centre Clutter Image Rating

Clutter–Hoarding Scale™

The Institute for Challenging Disorganization (ICD) developed the Clutter–Hoarding Scale™ (C–HS™) to serve as an observational guideline tool for the assessment of residential environments, and is intended for the assessment of the household environment only. There are five levels to indicate the degree of household clutter and/or hoarding from the perspective of a professional organizer or related professional.

 

The levels in the scale are progressive, with Level I as the lowest and Level V the highest. ICD considers Level III to be the pivot point between a household that might be assessed as cluttered and a household assessment that may require the deeper considerations of working in a hoarding environment.

Within each level are five specific categories that describe the degree of clutter and/or hoarding potential.

1. Structure and Zoning

Assessment of access to entrances and exits; function of plumbing, electrical, HVAC (any aspect of heating, ventilation or air conditioning) systems and appliances; and structural integrity

2. Animals and Pests

Assessment of animal care and control; compliance with local animal regulations; assessment for evidence of infestations of pests (rodents, insects or other vermin)

3. Household Functions

Assessment of safety, functionality and accessibility of rooms for intended purposes

4. Health and Safety

Assessment of sanitation levels in household; household management of medications for prescribed (Rx) and/or over-the-counter (OTC) drugs

5. Personal Protective Equipment (PPE)

Recommendations for PPE (face masks, gloves, eye shields or clothing that protect wearer from environmental health and safety hazards); additional supplies as appropriate to observational level

Example of Clutter- Hoarding Scale Level 5

 

Visit the Kane County Hoarding Task Force website for more resources on help for hoarders: https://www.kchoarding.org/

Choose Love, Not Stuff

I wrote this while my mother was ill some time ago, but the message is still true: Choose balance, choose love, and replace “things” with treasured memories and happy days.

There is never enough time.

Find time for balance in your lifeAs I sit here in the ICU with my ailing mother I lament on what I should have done. What else could I have done? There is never enough time. We all have choices as to how we live our lives and sometimes it is difficult to know when you need to take time away from work to help someone else or when it will be ok to just carry on your day.

I am so aware of my actions and emotions these days that I often feel that ignorance is bliss. How much easier it would be to just react and not be proactive. I have to catch myself and encourage myself to live in this moment. Last night I thought my mother wasn’t going to last through Christmas she was so sick. Today is a good day. She is alert, smiling and eating. I am happy, in this moment, at this time to have her, to love her.

I am reminded of the story “I’ll Love you Forever.” It is a story of a mother that cares and nurtures her son. As a baby she rocks him and tells him she will love him forever. As the story goes on it depicts the relationship of the mother and son and how it changes until the little boy is a grown man caring for and nurturing his mother, rocking her as she had rocked him. As I am blessed to be able to care for my own mother I realize that this transition has occurred. I am now her parent.

When I was a little girl I used to love to be rocked, (truth be told, I still rock when I am stressed). Instead of asking my mother if she would rock me, I would ask her “Momma, can I rock you?” I, like the son in the story, would love nothing more than to pick her up and rock her to sleep. Sleep, with sweet, sweet dreams of heaven.

Only God knows when he will take her, but I know she is ready. She has told me so. What a blessing to know that she is satisfied with her life and that she, while frightened of the unknown like all of us, is at peace knowing she is going “HOME” soon.

Part of having a balance in life is being able to live with the choices you make. Loving and being loved go hand-in-hand.

May you always realize that time and love are your greatest gifts. May you always remember what is important in life. May you make good choices, starting with choosing happiness and love over objects and clutter.

Hoarding and Mental Health – Finding the Support You Need

Living Life with Dignity on TLC's Hoarders: Buried Alive
Fran Piekarski (left), President of Living Life with Dignity, on TLC’s Hoarders: Buried Alive

For adults with disabilities or special needs, disorganization can be a huge problem — for both the individual and the family.

Individuals with mental health issues often exhibit the attributes of hoarding disorder.

Understanding the delicacy, privacy and pain of a hoarder’s situation is key to gaining their trust and reducing their stress during the process of change. Living Life with Dignity helps people who hoard by providing them with the tools to make decisions about their belongings and their future. We work with mental health professionals, condo associations, municipalities, and families to address the needs of those suffering with chronic disorganization and/or hoarding.

We offer the following services for clients affected by hoarding:

  • Confidential assessment
  • Assembly of customized team
  • Collaborative planning in coordination with your therapist or recommended mental health professional
  • Assistance with execution of our recommendation and collaboration

Transitions – Finding you the place that meets your needs

Often a disability will require a change in an individual’s environment. You or your loved one may be dealing with a temporary or permanent new need and the current environment may no longer suit your needs.

With over sixteen years of experience, we are skilled in working with the hoarding community, including crisis situations and eviction threats.

We can assist you in either re-equipping your current environment or providing new accommodations. Our goal is to locate the least restrictive, most beneficial option available. After all, part of quality living is a quality living environment.

Contact us for more information on help with hoarding.

Image Credit: St. Louis-based artist and photographer Carrie M. Becker created a miniature diorama of a hoarder’s house.

10 ways to Maintain Your Brain© from The National Alzheimer’s Association

  1. Head first: Good health starts with your brain. It’s one of the most vital body organs, 10 ways to keep your brain healthyand it needs care and maintenance.
  2. Take brain health to heart: Heart disease, high blood pressure, diabetes and stroke can increase your risk of Alzheimer’s.
  3. Your numbers count: Keep your body weight, blood pressure, and cholesterol and blood sugar levels within recommended ranges.
  4. Feed your brain: Eat a low-fat, low-cholesterol diet that features dark-skinned vegetables and fruits; foods rich in antioxidants; vitamins E, C and B-12; foliate; and omega-3 fatty acids.
  5. Work your body: Physical exercise keeps the blood flowing and encourages new brain cells. It doesn’t have to be a strenuous activity. Do what you can – like walking 30 minutes a day – to keep both body and mind active.
  6. Jog your mind: Keeping your brain active and engaged increases its vitality and builds reserves of brain cells and connections.  Read, write, play games, do crossword puzzles.
  7. Connect with others: Leisure activities that combine physical, mental and social elements may be most likely to prevent dementia.  Be social, converse, volunteer, join.
  8. Heads up! Protect your brain: Take precautions against injuries. Use your car seat belts; un-clutter your house to avoid falls; and wear a helmet when cycling.
  9. Use your head: Avoid unhealthy habits. Don’t smoke, drink excessive alcohol or use street drugs.
  10. Think ahead – start today! You can do something today to protect your tomorrow.

For more information and tips visit: http://www.alz.org

Dementia and Caregiving Challenges

You probably know that caring for a loved one with dementia won’t be easy, but these sometimes embarrassing and unfamiliar behaviors might drive you nuts.

Dementia and Caregiving Challenges

  • Dementia Sleep disorderSleep problems and caregiver exhaustion are two of the most common reasons persons with dementia are placed in nursing homes. Causes of sleeplessness in dementia patients include pain, lack of exercise and activities, anxiety, agitation, or too much fluid or caffeine late in the day.
  • Urinary incontinence is the second leading reason that families institutionalize their loved ones with dementia. Urinary incontinence in persons with dementia should be evaluated for treatable causes, including urinary tract infections, electrolyte and calcium abnormalities, prostatic hypertrophy, and estrogen deficiency. A regular toileting schedule at two to three-hour intervals or verbal prompting may also alleviate this symptom.
  • Agitation and aggressive behavior have been reported in 65 percent of community-dwelling persons with dementia. Reasons for agitation or aggression include overstimulation, physical discomfort, unfamiliar surroundings or persons, complicated tasks, and frustrating interaction, as well as more serious reasons as paranoia, delusions, or hallucinations.
  • Caregivers may be embarrassed or ambivalent about discussing inappropriate sexual behaviors exhibited by persons with dementia.
  • Persons with dementia are often reluctant to stop driving when safety is at issue.
  • Repetitious questions may be due to short-term memory loss and an under-stimulating/over-stimulating environment leading to anxiety, feeling out of control, or fear.

Also see:

Information for this blog cited from the Alzheimer’s Association and the American Medical Association

Written by Author and Keynote Speaker Sue Salach-Cutler. Sue has a Master’s degree in Gerontology and has worked in the healthcare field for over 25 years.  She is the Author of “Along Comes Grandpa”, a caregiving resource guide, and the novel “If I Walked in Her Shoes”. Her programs and books provide the vital resources needed to help family caregivers as they maneuver through the caregiving journey. Find out more about her books and programs here: CaregiverLife.com.  Adapted from: https://theworkingcaregiver.org