The Whitworths of Arizona, bringing science to you in everyday language.

Friday, February 21, 2020

Love & Sex, Pt. 3: Inappropriate Touching

Last week's blog was on the value of touch. However, not all touch is welcome. Sexual touching is a good example of this. Making love can be a very important part of a couple's relationship, even quite late in life. When dementia changes the relationship to one that's more nurse/patient relationship this can change.

For the spousal care partner, romance is often weaken by a combination of tiredness and normal dementia care jobs like helping a loved one dress or get to the toilet. Jobs like cleaning up smell messes definitely don't help, nor do the personality changes that often occur with dementia. Care partners find themselves caught between wanting their loved one to feel like the person they once were and their own growing feelings of distaste towards what used to be pleasant sexual contact.

When the care partner is the loved one's adult child, even custodial touching can feel awkward. While a spouse might be comfortable providing intimate care for their loved one, doing the same for a parent isn't so easy for either person. In this case, the metamorphous into a nurse/patient relationship may be a welcome change that reduces uncomfortable feelings of embarrassment.

For the person living with dementia, the change is more drastic. First, they may still perceive their relationship with their caregiver as the way it used to be, not the patient/nurse one the care partner experiences. However, we have certain social expectations concerning sex, and dementia can erode a person's recognition of these and their importance.

Stan, a man with early dementia wrote: "I find that more crude language comes to mind than ever before. Also, despite being 77 years old, I find myself having a great many sexual thoughts and feelings. Fortunately, these things have only been in my mind. None of this is at all characteristic of my personality. I attribute this to the changes taking place in my brain."

Stan's description of his thought processes is a unique look at evidence of the type of brain changes that eventually lead to inappropriate behaviors. We seldom see the behaviors themselves until the disease had eroded the person's perceived need for restraint. However, thoughts like Stan's are definitely symptoms of the disease. Sadly, this increased sexual interest tends to occur at the same time that care partners are getting more turned off. More sexually aware and needy but with little or no inhibition, the loved one acts out these feelings--anywhere, anytime with anyone.

But it isn't just brain changes. As a person begins to feel less independent, attractive, functional or adequate, they may turn to sex for proof of their value. With appropriateness out the window, sexual advances at any time of the day or any place can be expected. In fact, the advances are most likely when the care partner is most busy, especially if the job doesn't directly include the loved one.

All is not hopeless. Using Responsive Dementia Care, you can deal with these behaviors.
  • Awareness: Understanding dementia's effects on your loved one's brain.
  • Arrangements: Preparations that prevent unwanted behaviors.
  • Avoidance: Avoiding attitudes and actions that increase negative emotions, confusion and unwanted behaviors.
  • Attitude: Using acceptance and empathy to see the issue from their viewpoint.
  • Action: Acting to give them the emotional support they need.
  • Averting: Turning aside the unwanted behavior and using distraction to refocus the loved one's attention to something more acceptable.
OK, this doesn't really tell you enough, does it? But next week's blog will be about preventing and avoiding unwelcome sexual advances.

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.

Friday, February 14, 2020

Love & Sex, Pt. 2: Loving Touch

Happy Valentine's Day. Give yourself and someone else a hug for us today!

Last week's blog was about love and dementia. This week's blog continues that discussion. Years ago, we had a "touch but don't look" culture, where it wasn't unusual for a whole household to sleep in a single bed but one's body was hidden from neck to toes under layers of clothing. Now, our American culture has changed to "look but don't touch," where people's bodies are more exposed but there is much less touching. Even so, we humans are herd animals. That is, we thrive in groups and decline when isolated. We all need to be touched.

As we age, we tend to experience touching less and less. If you were raised as I was, in a non- demonstrative family, touching can become almost non-existent unless you make a conscious effort to change that. This is also the case if you live alone. However, you can change this. You CAN make that conscious effort and start touching more.

In a care facility, loving touch can be rare unless the person has regular visitors, family or otherwise, and even then, it depends it depends on if the relationship between the visitor and resident has been a touching one or not. Residents do get quite a bit of custodial touch when they are helped to dress, eat, bathe, etc. Don't discount this. It is better than none, but it doesn't have the power that loving touching does.

Sadly, it can even become rare in a home situation as well. A care partner may get so enmeshed and burdened with caregiving that they neglect to take time for gentle touching and hugging--or they may just not be a toucher. If this last fits you, it does not mean that you don't love the person in your care. It simply means that once you know the value of touching, you will need to be more conscious about doing it since it isn't second nature for you. The upside of this is that you get equal value from that touching!

Recent research supports the value of touching. Studies have shown that:
  • Hugging induces a chemical that increases feelings of connectedness, trust and security and reduces stress. Physically, it lowers blood pressure. Wow! Hugging is strong medicine! But there's more. Hugging that is front to front puts gentle pressure on the sternum which activates a process that strengthens the immune system. We often hug from the side, but make an effort to be more frontal...it is just healthier!
  • Even holding hands is healthy and the emotionally closer your hand-holder is to you, the more help you get. Holding hands with a stranger will lower a person's anxiety level. Holding hands with a spouse--or care partner--is even better. They have MRI brain images to prove this.
  • Cuddling or snuggling may even improve communication. Its non-verbal messages are powerful ways to let a loved one know you care.
  • Touch improves cooperation. People who are touched briefly on the arm or shoulder are more likely to comply with requests such as volunteering for charitable activities. A study in a home for the elderly showed that when service staff touched the patients while verbally encouraging them to eat, these patients consumed more calories and protein for up to five days after the touch. (When I read this, I immediately wondered if those poor patients didn't get touched again for those five days! Did you? Research can be oh, so helpful but it can also be cruel at times such as these.)
  • People recover more quickly from social rejection when they are holding a teddy bear on their lap. Also, loved one who are given a stuffed toy or a doll tend to express fewer needy symptoms and be less clingy.
And so please wrap your arms around yourself and give yourself a hug! Then go give your loved one a hug and finally, go find someone else to hug as well.

Reference

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.

Friday, February 7, 2020

Love & Sex, Pt. 1

This is the first in a series about how dementia changes love and its related sexual issues.

"I don't like my dementia dad very much. Yes, I still love him, but I don't like him. I feel so guilty!)

"Our relationship has changed from a passionate love affair to friendly roommates."

"We were partners, friends and lovers. Now he is a stranger and most of the time, not a very pleasant one."

Yes, sadly, dementia changes our loved ones. It can take away their empathy, increases their negativity and makes them more difficult to love. It can change them from an independent, enjoyable and helpful person to someone who is anxious or even angry, insecure and needy.

It changes the care partners too. If you aren't diligent about your own care, the stress of caregiving can make you not only physically sick, but irritable, impatient and depressed as well. Since dementia turns our loved ones into emotional mirrors, they will express these same feelings of irritability, impatience and depression along with their own indifference, negativity, dependence, insecurity and neediness--and more. You see where this can go...and what it can do to a relationship once built on love. The love may still be there, but it is so overrun by less comfortable feelings that all that may be left is guilt at not feeling what you think you should!

The answer is to start with accepting that it is the disease, not the person that you don't like, that makes you angry, that hurts you, that wears you out with neediness, that.... It is the disease. The more you learn about how the disease changes your loved one's brain, the easier it will be to see that this is so.

If your loved had a broken leg, would you be upset that he couldn't walk. Of course, but you'd be upset about the leg and the extra work it causes you, not his unwillingness to walk. That's the way you have to look at dementia, if you want peace of mind.

Dana expressed it this way: "Once I accepted what dementia had done to my husband's emotions, it became important--and easier--to show care, compassion and reassurance that I would be there for him. His anxiety levels dropped and he is less afraid when I'm not there at every moment."

Equally important is taking care of yourself. Again, this isn't easy, but it is every bit as important as any other caregiving task that you have. The payoff is that when you are rested and healthy, you will be more positive and that's what your loved one will mirror instead of all of those negative feelings that an overwhelmed and overburdened care partner expresses.

Finally, let go of the guilt that you didn't do it right or the worry that you won't do it right and practice compassion. Not only compassion for your loved one, but also for yourself--especially for yourself in fact. Compassion is accepting and giving. These positive feelings give back to you in well-being and health. Compassion, accepting and giving might also considered other words for love.

Next week's blog is about the importance of loving touch.

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.

Friday, January 31, 2020

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.

Friday, January 24, 2020

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.

Friday, January 17, 2020

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.

Friday, January 10, 2020

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.