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 Partners Pt 3: Burden and Help

Last week's blog was about the challenges of care partnering. While there can be blessings which last week's blog also discussed, the challenges can be detrimental to good care and as well as being actually deadly. Even so, if you are like most care partners, you want above all else to provide the best care possible for your loved ones. Thus, you need to stop and look for ways to do this and maintain your own well-being so that you can keep on doing that best job you can.

Care partners often feel that that they don't have the time or the energy or the know-how to do it all or do it right. No wonder they are usually stressed and overburdened! That doesn't have to be. Better information can actually change the workload, but even more importantly, it can change a person's expectations. These two together can change a person's stress level. And when a care partner's stress level is lower, so does their loved one's along with their stress-related behaviors, which decreases the workload.

Well, that's just great, you say. But I know what needs to be done and I know that it takes more time, energy and skill that I often have.

Well, first, let's look at that workload. What doesn't really have to be done? Start prioritizing and do only those things that need doing now. For example, dishes don't need to be done after every meal--or even every day. But there comes a time when you likely will need help. Dementia is an expensive disease. One reason is that extra help often becomes a necessity, not a luxury. If, even after you've done everything you can to cut down your workload, you are still feeling overburdened and stressing out, the time has come to find help.

Admitting your loved one to a care facility is something that most care partners put off until they have no other option. You might want to reconsider for a couple of reasons.

• The earlier a person enters a care facility, the more likely they will be able to become a part of the community and not simply someone sitting alone in their room.
• When someone else provides the physical care that wears you out and keeps you up at night, you can return to being family instead of caregiver. Nancy, a very reluctant care partner who finally made the move reported, "I so wish I'd done this sooner. We've gone back to being husband and wife and I love it." No longer overworked and under-rested, Nancy was able to provide her husband better emotional support, something that only she could do.

If your loved one is still at home and hiring help isn't in the budget, review the budget and see if you can fit it in after all. It is that important. The help doesn't have to be with your loved one to be very helpful. Someone to do household or yard chores can free you up to do the caregiving that you may prefer to do personally.

• Call your local Area Agency on Aging and ask about organizations that can help with the cost or even provide some care. 
• Talk to your church leaders and secular organizations like the Kiwanis and the Elks.
• If your loved one is a vet, contact the VA. Such organizations often have groups that visit and often provide non-nurse-related help such as lawn mowing or vacuuming.
• Finally, let go of your pride and ask family members, friends and neighbors to help. Family might be able to share expenses, or an adult child might be willing to spend nights with your loved one so that you could get needed rest. Friends and neighbors can spend an hour or so with your loved one to give your a break, provide meals or do house-or-yard work.

Once you have more help, you will find that you are doing a better job at those things that only you can do: providing your loved one's emotional support, managing the many aspects of care--doctor's visits, physical therapy, and so on.

Make sure you include some personal time. This is not a luxury. It is what refreshes you and keep you going. It should include not only some time to go to lunch with friends or yes! a support group, but also some quiet time at home for something like reading or a hobby. And don't forget your two-minute breathing breaks. Interrupting a stressful moment for one of these can cut down on a lot of friction!

Next week will be more about where you can get help.

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.

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.