Love & Sex, Pt. 4, Preventing and Avoiding the Behaviors

Last week's blog was about unwanted touching. This week's blog describes some dementia-related changes and offers some suggestions for limiting the resulting behaviors. Last week we introduced Stan, a man with early dementia. What he wrote bears repeating in this blog:

"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 is right about the changes in his brain. So far, he has been able to avoid acting on his thoughts but as his dementia advances, this will likely change. Dementia damages some areas of his brain less than others. One of these more functional areas is where he stores forbidden words and thoughts. Thus, Stan is beginning to think more inappropriately.

• His sensory abilities will continue to function as cognitive abilities decrease, making such feel-good activities as sex more attractive.
• His impulsiveness will increases, so that he will act upon his thoughts without stopping to consider their social acceptability.
• As illness increases Stan's feelings of inadequacy and insecurity, sex may be the way he tries to maintain his self-esteem.
• As dependence increases, it will foster a clinginess that makes sex even less attractive to his already overburdened care partner.
• As his empathy fades, he will have little understanding of why his spouse rejects once welcome overtures, why his adult child is repulsed by such behaviors or why friends are offended by crude words.
• The autonomic nervous system which controls a his sexual organs weakens. Thus, even though Stan may act out his sexual thoughts with words and touching, he may not be able to function sexually--adding more feelings of inadequacy and possible jealousy.

So, how can care partners deal this? Last week's blog contained a short explanation of the 6 As, awareness, arrangements, avoidance, attitude, action, and averting. This week, we will discuss the first two: Awareness and Avoidance.

Awareness. The first blogs in this series have mainly been about awareness of how the dementia brain functions. Becoming aware of these changes helps you to develop helpful attitudes, which we'll talk about next week. But it also helps you to develop ways to prevent the behavior from happening.

Arrangements. By thinking ahead and making preparations, you prevent some behaviors from happening at all. Mainly this is identifying triggers and finding ways to avoid, change or respond to them

• Boredom can be decreased with a fidget blanket or regular chores. Amanda reported, "I guess Dad was using sex to alleviate boredom. When I gave him a task, like a basket of clothes to fold and refold, he's happier and doesn't bug me with inappropriate touching." The chores also make him feel helpful and relieves feelings of inadequacy.
• A need to touch may be satisfied by a stuffed animal or doll. My mother had a stuffed animal she carried with her everywhere.
• Feelings of inadequacy, insecurity and fear of loss can be alleviated with ongoing emotional support throughout the day. Diane stated: "Once I was more aware of Dick's emotional needs, I found it more important and easier to show care, compassion and conviction that I would be there for him always. That way, his anxiety levels drop and he is less afraid when I'm not there every moment."

You can do some other preparation too:

• For friends, neighbors and other family members, make sure they know about your loved one's dementia and the way it can remove inhibitions. Remember, your loved one can and often will do Showtime around other people, which can mask the dementia.
• For strangers, consider making up a card that you can hand out as an apology. It can say something like "Please excuse my loved one. She/he has a brain disorder that increases sexual thoughts and decreases inhibitions."

Avoidance. Avoidance is not avoiding the possibility that these unwanted behaviors can occur. Rather, it is learning to avoiding those behaviors of your own that trigger your loved one's unwanted behavior.

• Avoid attitudes and actions that trigger negativity. Love ones tend to respond to anger with more anger, to see defending as downright lying, and to find explaining belittling. Avoid words and that don't match your actions. They will believe the actions.
• Avoid mixed messages, such as words and actions that don't match. Maintain continuity. Avoid allowing something for even a short while one time and forbidding it the next.
• Avoid nonverbal cues that might inadvertently encourage the behavior. You want your loved one to feel cared for and appreciated, but non-spouses especially will not want their touching to convey sexuality. Even spouses will not want to trigger a sexual response at the wrong time. This can be tricky because touching itself is so beneficial. In fact,  regular loving touch actually tends to decrease rather than increase the likelihood of inappropriate sexual behavior especially when the behavior is an expression of neediness.

Next week's blog will be suggestions for how a spouse or an adult child can deflect unwanted sexual approaches when they occur and do it in ways that cause the least stress for both parties.

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.

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.

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.

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.