Conflict in the Family – Will Mediation Help You?

This month’s dementia care article is guest-authored by our colleague Karen Dworski, LCSW. Thank you Karen for sharing your insights, and by supporting our shared communities. 

Mediation for Families Facing Dementia

by Karen Dworski, L.C.S.W., ElderPath Consultant and Mediator

Few people are prepared to hear that their mother, father, brother, or sister has been diagnosed with a dementia (now called a Neurocognitive Disorder). Just like the grief process described by Dr. Elizabeth Kubler-Ross in her work on the five stages of grief, family members of a loved one with a Neurocognitive Disorder go through a similar grieving process: denial, anger, guilt,sadness and acceptance.* Often families struggle with the denial stage, such as when a family member, say a daughter in California, is in contact with her Connecticut sister who is managing care for their mother who has been diagnosed with Alzheimer’s disease. So often I hear that the California daughter says, “Mom’s fine! I talk with her every week and she makes sense, she knows who I am.”  Or a son who is not a caregiver may struggle with his mother’s decision to place his dad in a memory care assisted living, struggling with his own guilt about not being available to give enough support to keep his dad home.

These are two of many scenarios that occur when family mediation can be very helpful in assisting families with the emotions and decisions related to caring for a loved one with a Neurocognitive Disorder (dementia). Often families benefit from sitting down with a dementia care specialist who can facilitate a discussion about care, covering such issues as:

  • what is each family member’s goal for care for that loved one with a Neurocognitive Disorder?

  • What is a realistic assessment of the loved one’s level of dementia and stage of the disease?

  • How to help a family understand the level of functioning and explore the options, develop different plans of care that meet the needs of the loved ones in a way that basically satisfies the family- finding the right path for elder care.

  • How to have this discussion and bring family to the same page, preserving family connections and relationships

As a social worker and therapist specializing in geriatrics and Neurocognitive Disorders, I meet with families in their homes or my office to mediate these issues.Often families are surprised to find out about the many good options for care that are available, from in- home care that ranges from a few hours to 24/7 care, supplemented by adult day recreation programs, to excellent memory care assisted living communities and nursing homes. An important part of the mediation is to address the grief, loss, and sometimes denial that family members experience, bringing them to an accordance around a plan of care. Of course, the discussion also includes reviewing funding for care, and referrals to funding sources where possible.

I recently met with a daughter, Jessica, from Massachusetts and her father’s partner of over 20 years, Doreen. Doreen had been providing care for Jessica’s father for the last 3 years and his father’s Neurocognitive Disorder was advancing rapidly, leaving him currently with the developmental abilities of a 5 year old child, needing help with many functions of daily life: medication management, dressing, bathing, meal preparation, and recently toileting assistance. Doreen was burned out from working full time and providing all the care except for a 2 hour a day caregiver 5 days a week. Jessica’s father was home alone except for 2 hours a day with a caregiver, so he was often bored and began to feel more depressed. We identified Jessica’s wish that Doreen could continue to care for her father, yet she understood Doreen’s exhaustion and the need to stop caregiving and return to being a companion/partner. We talked about the way Doreen’s role over the last 3 years slipped into one that was primarily caregiving instead of a life partner, and how stressful and lonely that was for Doreen. During the 2 hour mediation session, Jessica and Doreen agreed on a plan for in-home 24/7 care with Doreen moving  out over several weeks, but continuing to visit a few nights a week after work in the role of companion/partner. They were aware of the option of moving Jessica’s father to a memory care community and ultimately to a nursing home with a dementia care specialty, but that wasn’t the first choice.

With the aid of mediation, both Jessica and Doreen were able to develop a plan where everyone’s basic needs were met: Jessica’s needed to know that Doreen would continue to be a part of her father’s life and that her father would have the care and support he needed.  Doreen sorely needed a respite from caregiving and to be able to return to her role as companion/partner. Jessica’s father would have high quality paid caregivers who would provide the stimulation and activity needed to keep him from becoming depressed and would keep his functioning as high as possible over time. Both Doreen and Jessica agreed on the steps needed to put in home care and remove Doreen from direct caregiving. Ultimately, they agreed on a good plan for Jessica’s father and, importantly,  their relationship with each other was preserved, one of the goals of good mediation. As you can see, family mediation can provide the right help at the right time.

*See Grief and Loss as Alzheimer’s Progresses:https://www.alz.org/care/alzheimers-dementia-grief-loss.asp

https://www.alz.org/care/alzheimers-dementia-grief-loss.asp

Karen Dworski, L.C.S.W. is a Consultant and Mediator for ElderPath LLC; www.elderpath.net860-652-8809; karen.dworski@elderpath.net

Thank you Karen for submitting this. And thank you all for reading our blog. For more information about stages of dementia, services which may help you or how to schedule a dementia consultation, call Hebrew HealthCare at 860-920-1810. ~Pam

Cyber Monday Gift Ideas for Seniors

by Pamela Atwood, MA, CDP, CLL

Happy Thanksgiving. In case you haven’t noticed ~ the holidays have started. Negative political ads have been replaced by holiday “needs” in a nearly-constant bombardment of commercials, while Facebook-ers debated whether or not to shop on Thanksgiving. I think shopping for me would be much more pleasurable if I had a good sense of what each person on my list really wanted. As I was thinking last Friday of the “deals” I was surely missing as work trumped Black Friday, it struck me that you might like a list of ideas for those on your list who are elderly or living in Assisted Living or Nursing Homes. For a complete list of ideas and resources, visit www.agingcareacademy.org and scroll down to “Your Personal Consultant.”

Hobby & Leisure – there are great resources available for everything from adapted puzzles to games and reading. The puzzles should always be age-appropriate (not childlike), and suitable for the current ability – from 4 or 6 pieces to 50 pieces. Magnetic puzzles with stands are great for those with neck problems. For reading, my newest resource is based in solid research from a physician and speech/language pathologist: Reading2Connect.com. This product has adapted graphics and photos, plus reading content tailored to various abilities — people with advanced dementia may still be able to read! Games which spark memories, use contrast and easy to manipulate materials are available at alzstore.com, best-alzheimers-products.com and memoryjoggingpuzzles.com.

Cognitive Fitness – books, activity cards, games and software are available in all shapes and sizes. Attainmentcompany.com offers the Whole Brain Workout series. Resources throughout the web offer products such as “Connect: Memory Enhancing Game” which can be used in a number of ways to improve neuronal flexibility for all abilities.

Physical Fitness – being confined to a wheel chair does not mean you should quit being active. Some of the best exercise videos are now available at very little cost. Enjoying yoga, aerobics and stretching and strengthening is now possible in your own living room or day room. Check out chairdancing.com, gentlefitness.com and the award winning PBS special sitandbefit.org.

Quality of Life – No one should have to watch garbage television, wonder where the family is or be isolated because of changes in communication. A communication book, talking photo album or alternative TV program would improve quality of life for all. Attainmentcompany.com, Alzstore.com and Best-Alzheimers-Products.com can provide ideas for any gift giving budget.

If you order through Amazon, sign up for AmazonSmile and add Hebrew Health Care as your charity: a % of your total will be donated so your gift is twice as nice.  Thank you, and Happy Holidays!

 

Caregiver Corner: Encourage Independence with Personal Care

Pamela Atwood, MA, CDP, Director of Dementia Care Services, Hebrew Health Care

One of the most challenging aspects of caregiving is assisting with personal care. However, independence increases success and minimizes how stressful these tasks can be.  Caregivers that keep the individual’s remaining abilities in mind are most successful.

Some basic tips to encourage independence with toileting, bathing, dressing, grooming and eating include:

Help the person feel in control
You may need to experiment to learn what the individual can do for him or herself. Give the person time to complete the activities that can be done with coaching and cueing only.

Use task breakdown
Give instructions a step at a time breaking tasks into individual actions. “Brush your teeth” sounds simple, but requires a great deal of cognitive and physical activity. Coach the individual through each step. If you separate each action, you may find the person can still accomplish the task with cueing only.

Simplify routines
Lay out clothing, prepare bathrooms, and offer one food item at a time. Activities of daily living can quickly become overwhelming to someone with cognitive impairment.

Monitor for safety and health
Install grab bars (do not use towel racks), use non-slip mats, and ensure the water is a comfortable temperature. Monitor for choking while eating. Observe for skin irritations if the person is incontinent.

If you need more ideas, there are many professionals at Hebrew Health Care who can assist you. Ask the day center staff or home care nurses for other ideas on how to maintain independence. There are also great resources available through various caregiver groups. If you would like resources, access Aging Care Academy website at www.agingcareacademy.org or contact us at (860) 920-1810.

Caregiver Corner: Surviving the Holidays

Pamela Atwood, MA, CDP, Director of Dementia Care Services

Holidays represent opportunities for togetherness, love, laughter and sharing with family and friends. In reality, they can be stressful times for everyone. They can be completely overwhelming to caregivers, and often represent loss, sadness and disappointment. Keeping these survival tips in mind will help caregivers make the most of this holiday season.

Be realistic
Know your limits, and the limits of your loved one. Adjusting expectations will help caregivers, family and friends. Activities often need to be simplified and minimized to reduce stress levels. If you usually serve 20 people, serve only 5 this year. Or instead of making all the food, have guests bring the holiday dishes that mean the most to them. Caregivers can expect the normal tensions of the season, plus the stress of caregiving responsibilities. Let others know what they can do for you – and then let them do it!

Involve your loved one but recognize signs of stress in them
The care recipient may want to participate in festivities, but not feel comfortable in large crowds. Observe for symptoms of increasing anxiety or cues that s/he is becoming over stimulated. Explain to your host in advance that you may need to leave early and unexpectedly. Avoid a scene by explaining in advance. For people with dementia, most gatherings must be with smaller groups and for shorter periods of time than in the past.

Try to stick to routines
Especially if your care recipient has dementia, sticking to the usual routine is very important. Taking on too many holiday tasks will stress out caregivers and thus care recipients.

Adapt gift giving
Ask for gifts that are useful, such as adaptive, washable clothing, tapes of favorite music or old movies, respite time, subscriptions to newspapers or magazines, or labeled family photo albums. Beware of toxic plants, such as poinsettias, holly and mistletoe.

Take care of yourself
Be sure to get enough rest, eat properly and exercise. Caregiving depletes your physical and emotional energy; caring for yourself can get it back. Limit alcohol consumption (a depressant drug). Be realistic about our own emotional needs but keep a sense of humor – the best coping strategy to survive the holiday season.

Caregiver Corner: Dental Care

Pamela Atwood, MA, CDP, Director of Dementia Care Services, Hebrew Health Care 

4 Reasons Dental is Linked to Health 

One of the most challenging aspects of caring for older adults is oral care. Recently, one of our caregivers asked, “Does she still need to brush her teeth now that she’s in the end stage?” I asked our geriatric-dentistry expert, Dr. Ruth Goldblatt, for her ideas. She confirmed that oral health remains a top priority throughout life, for a number of reasons:

No. 1: Oral pain can decrease food intake;

No. 2: Poor oral hygiene affects the self-esteem of the patient;

No. 3: Poor oral care/hygiene is uncomfortable for friends/family/caregivers and may result in social isolation; and most importantly,

No. 4: Poor oral health can lead to serious infection, including pneumonia.

Top 3 Tips to Maintain Oral Health 

No. 1: Get baseline dental data and X-Rays for the patient.

No. 2: Get the best dental health as soon as you get a diagnosis of Alzheimer’s or other form of dementia – that doesn’t have to be the most expensive or most elaborate.

No. 3: Establish a routine of completing dental care at the same time every day – preferably 2 times/day after meals if possible.

Dr. Goldblatt also shared the newest resource for oral care – a training video designed for professionals but helpful for families too. It’s available for a modest fee at www.mouthcarewithoutabattle.org; and there is a free video preview on the website.  I will warn you – don’t watch it while eating. The pictures are real and relatively graphic to those of us with weaker stomachs. But the information is superb. Tips on brushing, alternative products and techniques for working with resistive persons are available.

Caregiver Corner: Coping with Guilt

Pamela Atwood, MA, CDP, Director of Dementia Care Services

All caregivers experience guilt at some point, either about “the big picture,” or a tiny, forgotten detail. As a follow up to recent topics on stress, let’s examine one of the greatest causes of stress: guilt feelings. Much of the information here is adapted from information available at www.coping.org website by James Messina, PhD and Constance Messina, PhD (used with permission).

 Whether your feel regret from your real or imagined misdeeds, or feel loss and shame for not having done or said something, guilt can result in: oversensitivity; immobilization; changed personality, and; problems that seem insurmountable. Analysis of guilt helps minimize stress.  Ask yourself if a problem can be solved or minimized by eliminating the guilt. Some steps suggested at www.coping.org include:

  • Redefine your problem with the absence of guilt as an issue.

  • If the problem is really someone else’s, give the problem back to the person to solve and to deal with.

  • You must confront the real or imagined guilt or fear of guilt preventing you from either handing the problem back to someone else or handling the problem on your own.

Affirm for yourself that:

a) YOU deserve to solve this problem,

b) YOU deserve to be good to yourself, and

c) YOU deserve to have others be good to you, too!

Consider solutions you once dismissed because they made you feel even guiltier.

Coping with guilt might help you accept help from family or friends, or consider professional help or services so you can continue to be an effective caregiver.

Essential Resources for Caregivers: Books

By Pamela Atwood, MA, CDP Director of Dementia Care Services

When faced with a challenge, the first thing you need is information. The old adage “Knowledge is power” has never been more true than when you face caregiving. In this series, we’ll review some books, videos/DVDs and websites that you may find helpful. Some of my favorite caregiving resources are available electronically, from your local library, and book retailers.

The 36-Hour Day (current ed., 2012) by Peter Rabins and Nancy Mace is still THE premier resource for caregivers of people with memory disorders. As I tell all of our families, this is not a book you read cover to cover; rather it is one you peruse problem by problem, a chapter at a time when you need it.

Learning to Speak Alzheimer’s (2004), authored by Joanne Koenig-Coste, is a superb method for caregivers of people with any kind of memory loss. With a focus on remaining skills, communication and the environment, this book teaches readers the best-practices of communication and the habilitation approach.

Hiding the Stranger in the Mirror: a Detectives Manual for solving problems associated with Alzheimer’s disease and Related Disorders (2012) is a new book by Cameron Camp, PhD. This is a brilliantly written, easy-to-read guide to dealing with all kinds of behaviors.

Elder Rage- or Take My Father, Please! (2001, e-book 2010) was written by Jacqueline Marcell. The author gives important information on caregiving for families where relationship challenges pre-exist the memory disorder.

The Complete Guide to Alzheimer’s-Proofing Your Home (2000) by Mark Warner is still one of my favorite books. It gives terrific information about memory disorders, as well as resources and tips on keeping people in the home of their choice as long as possible. Although some of the resources may be out of date, it will give you ideas about what technology and strategies can minimize household risks.

Still Alice (2009) was written by Lisa Genova, a Harvard-PhD neuroscientist and author. Although fictional, it is very realistic as it chronicles a woman’s experience with younger-onset Alzheimer’s disease. This book spent more than 40-weeks on the best-seller list for a reason – it’s haunting as it gives caregivers insight into the experience of a person with progressing dementia.