Care Partners Pt. 4: Resources

This month's blogs have been about care partnering. We've made a point of saying that this is a daunting job and you will likely need help before it is done. And so how do you go about getting that. Well, last week's blog made some general suggestions but this week is more specific by highlighting just a a few of the many resources noted in our books. For a longer list, check out our books.

National Association of Area Agencies on Aging: Because this group has local offices in most communities and therefore can provide you with lists of local resources, it is at the top of this list and the one you should check out even if you don't check out any of the others. your list of resources. 202.872.8888 or email info@n4a.org.

LBDA.org: This is the most thorough website focuses specifically on Lewy body dementia on the internet. You can find information about LBD, support groups and a medical glossary here as well as a myriad of other things.

Family Caregiver Alliance:  This is Jim's favorite, after the LBDA.org and our own, of course. It is one of the best caregiver sources on the internet. Find databases for a multitude of local resources by state. 800.445.8106.

Assist Guide Information Services.  Excellent site with checklists, databases and information on the disease, drugs, home care and safety, legal and financial issues, care placement and other caregiver support.

AARP Health Tools. Especially helpful with medications, these tools not only include drug symptoms and interaction checkers and other drug related tools, but other information as well such as cost caculators and Medicare information.

USA.gov for Caregivers Resources. Directory to state and federal websites and agencies offering services to caregivers. One listed website is benefits.gov, useful for researching government help. 844.USA.GOV1.

Hilarity for Charity. An organization that raises money for grants for dementia caregiver assistance. Use their online email contact form to apply for a grant for financial help for in-home caregiver costs.

Rebuilding Together. Home caregiving often requires remodeling bathrooms. This nonprofit may be able to help you with low or no cost home modifications. 120 local USA offices. 800.473.4229

The National Academy of Elder Law Attorneys, Inc. (NAELA) Click on “Find a Lawyer” for elder care lawyers by city/state, zip or name. Care partners highly recommend that you use an elder lawyer to prepare your legal papers. You should be able to use this site to find one in your area.

Guide to Long Term Care for Veterans. Information about home, community based and residential long term care options. If your loved one is a veteran, don't miss out on benefits by neglecting to contact the VA.

National Long-Term Ombudsman Resource Center.This organization not helps you find an appropriate local long term care facility. Then it provides advocacy if you have a dispute with them.

As promised, this is only a short list of the resources available to care partners. You can find more in our books.

Care Partner Pt 2: Challenges and Blessings

Last week's blog started the year out with a discussion about care partnering and what it involves. This week's blog continues that discussion with a focus on challenges and blessings.

As shown last week, the job itself can involve many aspects, each of which can be challenging physically, mentally and/or emotionally. But other challenges that make a care partner's already difficult job even more difficult include elevated sense of burden and reactions due to changes in their relationship with their loved one that result in stress-related:

• Depression, due to feelings of loss, ineffectiveness, frustration, tiredness, etc.
• Higher risk of heart disease and headaches, due to increased fight and flight hormones.
• Digestive problems, due to stress induced decrease in digestive functioning.
• Disturbed sleep, due to their loved one's interruptive sleep behaviors.

It's no surprise to care partners to read that their job is challenging. They already know this from personal experience. However, there is also scientific proof. We talk a lot about using biomarkers to help diagnose our loved one's diseases, but they can also show evidence of the challenges that care partners face. Biological marker abnormalities among caregivers include:

• Increased cortisol secretion, a stress-related hormone.
• Abnormal glucose regulation, caused by hormones that add energy for a short term flight/fight reflex but tax a body's insulin production when stress is chronic.
• Inflammation, a normal response to foreign bodies, that becomes harmful when stress is chronic.
• Weakened immune system, when a normal decreased immune response is extended by chronic stress.

Even so, care partners find it difficult to seek out the help they need due to being:

• Too overwhelmed. Seeking help may seem like just one more job in an already too full workload.
• Too depressed. Depression can take away a person's ability to initiate...or in this Increased stress reactions associated with altered relationship dynamics, elevated sense of burden and depression
• Too frustrated. Frustration is a negative emotion that motivates action but that action is seldom positive or helpful. More likely it instigates anger which only makes the situation worse.
• Too isolated. It is essential to have open discussions to maintain well-being but dementia care can be quite isolating, as friends fall away and the job becomes to demanding to allow outside interests.

However, dementia care partnering isn't all negative. Care partners can experience a variety of positive feelings and emotions. Many care partners say that even though the job is difficult, it can also be rewarding. Perceived benefits associated with caregiving include:

• The opportunity to give back. Giving is a positive feeling that always helps.
• Improved relationships. As care partner and loved one learn to work closely together, a new and sometimes, better relationship can appear. This relationship will change as the disease degenerates however.
• Feeling good about the quality of care. Most care partners know that they can provide better, more individualized, care for their loved one than a care facility can.
• Serving as a role model for others. This is most likely to happen in a support group and is one of its important values.
• Increased self-esteem, a normal result of feeling useful and needed.
• An enhanced sense of purpose. Care partnering is a demanding job and expending the effort to do it well feels good...as long as it doesn't get so difficult that it becomes burdensome.
• Feelings of pleasure and satisfaction. These can vary greatly, from the pleasure of a job well done to seeing the contentment of one's loved one to being more appreciated of personal time when it occurs.

A good share of the information for this blog came from Dr. James Galvin's presentation at the 2019 International Dementia with Lewy Bodies Conference.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Phrase of the Month: Care Partner

Over the last year we've started using certain words and phrases more and more. One of these is "dementia care partner" vs. "dementia caregiver."

We identify a dementia caregiver as anyone who provides care in some way for a person living with dementia. A dementia care partner is usually someone who lives with the person and is responsible for their whole care. That is they may not provide the care, but they are responsible for making sure it is provided.

While a caregiver may provide only physical care, a care partner's job is much more diverse. The responsibilities of a care partner, also called a family caregiver, include many challenges but also with many blessings. The job can involve any of the following and more:

• The physical, hands-on care of their love one. Helping with dressing, toileting, bathing, eating and all those many daily living activities.
• Care management. Arranging for care and services such as doctor's appointments, lab tests, physical and occupational therapy related to LBD and other medical conditions.
• Assessment of a loved one's condition. Deciding when to call a doctor or ask for other help or guidance.
• Social manager and companion, making sure that their loved one continues to have social contact in ways that are less anxiety producing.
• Legal manager. Making sure all the necessary legal paperwork is in place so that as the disease progresses, transitions or responsibility will be smooth.
• Financial manager. Being responsible for the management of regular income and expenses.
• Housekeeper, cook and dietitian. Making sure the home is safe and clutter-free and the food is not only attractive but brain supportive.

Along with all of these jobs, the care partner also usually has a previous relationship with their loved one: spouse, child, or other relative. Jim's was that of spouse. My loved one and I were sisters. My daughter cares for her mother-in-law.

Each of these relationships started out different and involved a variety of challenges as the disease made the roles change. These transitions can be difficult, as responsibilities once held by the loved one pass by necessity to the care partner--not always willingly on the loved one's part!--and as activities once enjoyed by the two become less enjoyable or even impossible. Next week's blogs will explore some of these challenges and identify some blessings.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.