Dementia and SEX – Let’s Be Honest It Happens

Dad’s behavior is becoming more erratic as his dementia advances. His former mild manner is long gone replaced by outbursts and suspicion that come with sundowning each day.

The man you have known all of your life, the man who would never think of stepping out of line or behaving in an inappropriate manner with women, has suddenly started exposing himself to you and every other female he comes in contact with. He may express his desires in the crudest terms there are.

Shocked and horrified you may wonder, “Is this a side of him he kept hidden all these years? If so, I have no idea who my father really is.”

Or: You enter your mother’s room to say goodnight. She has thrown off her blanket and removed her underwear. Her back is to you. It takes a few seconds for you to understand what she is doing.

Your reaction may be, “Oh my god, Mom would never do that!”

Or: You arrive to spend time with a spouse in a memory care facility and walk in on him or her in a passionate embrace with one of the other residents. You are hurt and angry. Feelings of betrayal and jealousy take your breath away.

How could the one who promised to faithful until death do us part betray you when you are sacrificing so much to make sure they get the best possible care?

What is going on? How can you ever face this person? Do you even want to? What can you do about it?

Dementia is a devastating brain disease. If the part of the brain where inhibitions are stored is affected acting out sexually may happen. The libido remains strong throughout life, for women and men with dementia included. The difference now is that their brain is damaged. They don’t understand that their behavior is not appropriate.

So what are you, the caregiver, to do?

First and foremost, protect yourself. If there is any hint of danger go to a place of safety. Lock yourself in the bathroom, run to a neighbor, call 911 if necessary. Make sure you tell the dispatcher that the person acting out has dementia so officers understand what is happening and why.

If there is no danger to you or others, simply close the door and walk away allowing him or her the privacy they deserve and you the time to work thorough your feelings.

Understand that people with dementia often forget their actions as soon as they occur. It would be helpful if you could find a way to do the same. If you can’t, feel free to vent here. You are not alone. The Imperfect Caregiver has lived it and is here to help. 

For more information on sex and dementia go here: http://bit.ly/2wBy3Dp

Advertisements

Why You?

Often one person in a family becomes the caregiver and the others go on with their lives as before, offering little or no help.

Why did you decide to be the one who gives so much?

In my case people were surprised to discover that I was a caregiver for my father-in-law. “You mean he’s not your father?” they would say. Surprise evident in their tone.

They were even more amazed when told he was my husband’s stepfather and not a blood relative to either of us.

“Why would you do this? You must be a saint.”

I am no saint. I am simply a woman who saw a family member in need and did my best to help. I didn’t know how hard it would be or how long it would last. How could I have known? But even if I had I would not have changed a thing.

Some day I will need help and I hope someone will be there for me.

Families are not created only through DNA. We marry, we bear children, we divorce and remain connected. Families feud over things big and small and still  remain connected.  We create unique families through adoption, friendship, and commitments of all kinds.

Through this blog I reach out  to offer support and understanding. To let you know you are not alone, that you are part of a vast family of caregivers.

Why did you decide to join this tribe?

 

 

Bath Time In Dementia Land

Does this sound familiar?

“Dad, it’s time take a shower.”

“No.”

“Come on, really? You haven’t washed in over two weeks.”

“Not true. I took a bath yesterday.” (He didn’t, he only thinks he did.)

“How was it?”

“Wet and cold.”

“I’ll make sure the water is nice and warm. I’ll even put the towels in the dryer so they feel nice when you get out.”

“People don’t have to take a shower all the time. You think a bath is so great you take one.”

“I did. Don’t I smell nice?”

“Who cares about smell? Women smell nice. Men smell like they smell. All my life I work hard.”

“Yes, you did. And after working hard you washed yourself.”

“In the Old Country I took a bath on Saturday night. Had to be clean for church on Sunday. My mother always had the hot water ready.”

Hearing Dad talk about the Saturday night ritual in Italy as he was growing up gave me an idea.

“That’s right,” I said. “Saturday is the day to get clean for church in the morning. I forgot.”

“I remember everything. It’s a good thing I’m here,” he huffed. “I watch the news now.”

Yes, it’s a very good thing you are here,” I replied.

That evening, after helping him eat his dinner I warmed some towels, put the shower seat in place and turned on the water in the shower. Once it was nice and warm I entered Dad’s room.

“What’s up?” he asked.

“It’s Saturday. Time to get cleaned up for church tomorrow. I have the hot water ready.”

“It’s a good thing you didn’t forget. My mother always said, “Cleanliness is next to Godliness.”

I helped him rise and pull his T-shirt over his head and said a silent thank you to his long deceased mother for the night before church routine she instilled in him so many years ago.

After that, whenever her needed a bath or a shower it became a Saturday in our house no matter what the calendar said. And even without going to church the next day, my prayers were answered. Dad was clean again.

Early in his time with us Dad would always take a shower and shave before seeing a doctor. Later, when he began to balk at the Saturday night ritual, I’d tell him his doctor wanted to see him in the morning. Soon after taking a shower he would forget what I’d told him and was content watching television in clean pajamas.

Another caregiver I spoke with told me about someone she cared for who had spent their entire career in the military. Being told an inspection was scheduled for the next day always inspired him to make sure his room and his person would pass muster.

Not everything I tried  worked every time. However, I really appreciated the times when something I did resulted in even a very small success.

Was there a recurring occasion or event when your family member always wanted to look his or her best? If so, please share it here. It might help you and another caregiver avoid some of the intense stress that often happens at Bath Time in Dementia Land.

 

A Precious Memory

The following is an excerpt from my book, Confessions of An Imperfect Caregiver. It seems fitting to share this moment as Easter approaches.

“The aroma of pasta sauce and roasting chicken wafted through the house. A beautiful apple pie rested on the kitchen counter. I hummed “Here Comes Peter Cotton Tail” as I adjusted my best tablecloth before going to the china cabinet and getting three place settings, consisting of dinner plate, salad plate, and bread plate. After carefully placing the proper utensils next to the plates, I added a water glass and a delicate wine goblet and stepped back to admire the table. Mike had folded cloth napkins into delicate winged swans to be placed in the center of the dinner plates. Silver candlesticks flanked a beautiful flower arrangement that complimented the decor perfectly. Just before calling the men to dinner, I’d cut the pie and placed three pieces on matching dessert plates, ready to be served when the time came.

Rodger had looked pleased when Mike and I went into his sitting room and presented him with his Easter basket that morning.

“Happy Easter,” we greeted him.

“Happy Easter,” he replied. “What’s all this?”

“It’s some Easter candy to sweeten your day,” I said.

“They don’t have Easter candy in the old country. Easter is a religious day. Everybody goes to church,” Rodger said.

“It’s a religious holiday for people here too,” I explained. “But we also have the traditional Easter baskets.”

“Do I have to go to church?” he asked. “I only go to church when somebody marries or dies.”

“You don’t have to go to church if you don’t want to,” Mike assured him. “Enjoy your candy and join us later for dinner in the dining room. Bobbi is making a special dinner.”

“Who’s coming? Do I have to take a shower?”

“No one is coming. It will be the three of us. But it would be nice if you took a shower. You’ll be nice and clean for dinner.”

“I don’t need to take a shower to eat. I don’t need special food. I eat anything”

“We know you’ll eat anything,” I said. “But on holidays we like to have a special meal. And you don’t have to take a shower today but you will have to take one soon. You need it. I’ll call you when dinner’s ready.”

I could tell he was curious about what was going on when he came down to go for a walk and saw the table set in the dining room. He didn’t say anything but spent several minutes looking at it on his way out.
Even the weather was cooperating. The air was warm and the sun was shining. After his walk, Rodger sat on his bench in the front yard and watched the birds flitting between the two feeders hanging from the tree he watched grow from the day we moved in.

He had become a fixture in the neighborhood, taking his three daily walks. He knew when people were moving in and when a house was listed for sale. He kept track of who had dogs and if they barked when he passed by or not. He always let me know when anyone planted something new in their yard and when the Christmas decorations went up. He rarely spoke to anyone, but he knew who lived where and could tell if they changed their routine in any way.

Despite his earlier protest, when I called the men to dinner, Rodger arrived freshly showered and shaved, wearing clean clothes and a shy smile.

“Sit here, Dad,” Mike said as he pulled out the chair at the head of the table.

“Me, here?” he asked.

“Yes, you’re the guest of honor today.”

“Guest of honor. I’m not a guest of honor. I’m not special.”

“You are to us,” Mike and I said at the same time.

Rodger didn’t speak as he filled his dish with chicken and pasta. Nor did he say anything when I passed him a plate of salad and offered him some toasted garlic bread from the napkin-covered serving dish.

“Before we eat, let’s have a toast. Your wine glass has sparkling grape juice so you can drink too,” Mike told his father. “Happy Easter,” he said, raising his glass. “And to Rodger,” he added.

I lifted my glass to my father-in-law and repeated Mike’s toast.

“To Rodger. We’re so pleased you joined us to celebrate today. You look very nice.”

“Thank you,” he said. Then he lifted his fork and began to eat.

Everyone was quiet for several minutes, each lost in thought and enjoying the meal. When Rodger broke the silence and began to speak, Mike and I were stunned to see tears in his eyes.

“I never thought I’d have a meal like this, in a place like this. Everything is beautiful. The food, the dishes, flowers and candles, everything. I feel like a big shot.”

Dabbing at this eyes with his napkin, he looked around the room pointing to the delicately carved chairs and the gleaming china cabinets. He took a few moments to gaze at the framed print hanging on the wall. “Dinner at the Ritz,” it’s called. In it is depicted a group of Victorian ladies dining in their finery at flower-laden tables on a summer afternoon.

“Beautiful ladies,” he said. “Everything is nice. I never thought I’d have anything like this. I can’t believe I’m going to die here. I was born in a big house, and I’m going to die in a big house. Thank you.”

We didn’t know what to say. We had never seen him so touched by anything. We didn’t know he could be moved like that. We were grateful and humbled at the same time. Whatever happened in the future, no matter how hard things got, we’d always have this moment with him.”

As time passed and Rodger became more and more ill, I clung to the beauty of that day. That Easter dinner is one of the many moments that convinced me that, despite the ravages of his illnesses, he was still in there somewhere and he appreciated those moments as much as I did.

 

 

I Wish I Knew Then What I Know Now

When I became a caregiver for my father-in-law with dementia I didn’t know how hard it would be, how long it go on, or how much it would change me. I learned a great deal in those seven years. The most important of which is, I am not an expert in this. There are no experts. I call what I did, creative problem solving on the run. Sometimes what I came up with worked, like the day I sang off key to get him to put his seatbelt on. Sometimes they didn’t, like the many times I tried to reason with him before I learned that his reality was the one I had to deal with and I had go there with him.

What do you wish you knew before you became a caregiver?

What is the most important thing you have learned so far?

I’d love to hear from you. Your answers may help someone.

Touching Words From A Reader

The following is an excerpt from a letter that appeared in my email yesterday. 

Your book is beautifully and courageously written. Your honesty about your own limitations (real or perceived) is human and refreshing and relatable. Your voice of advocacy for patients and families in what sometimes feels like a battle with healthcare professionals is a strong rallying cry and a reminder that in the struggle of priorities, loved ones are ultimately the only advocates whose motives are completely unfettered. You are able to weave in humor where appropriate, and to me that is a reminder that the survivors still have to survive and find a way to cope with change, loss and pain via a means other than tears (especially in retrospect). I laughed and cried shamelessly for the duration, rereading some paragraphs in the final chapters to compensate for my teary, blurry vision. Thank you for this book. I will post the most positive review on Smashwords that I am able. I also have already recommended it to all of my family who suffered the loss of my father by my side.

J.D.

To hear from a caregiver that my words touched him in such a positive way is a gift beyond measure. I hoped it might happen during the days and weeks I relived our story. I am grateful to learn it came true for J.D. Caregivers you are not alone in your actions or your feelings as you do so much for others. Blessed be.

A Fearsome Intimacy

Caregiving Fearsome Intimacy

When we hold our infants in our arms we are filled with awe and hope for the future. We envision a life of promises fulfilled. We never picture them feeding us, holding our hand to keep us from falling, or changing our underthings. I couldn’t type the word diapers. The thought of losing my dignity to such a degree is truly fearsome. In my mind I hear the words, “It’s enough to scare the pants off me.” The irony makes me shudder and chuckle at the same time.

The caregiver and the cared for locked in a fearsome intimacy. I don’t know where the quote above came from. If I did I would give credit here. What I do know is those five simple words speak a devastating truth.

 

Get Enough Rest, Really People?

caregiver-stress

Tips on how to recognize and cope with caregiver stress appear on almost every caregiver website, blog, and column. Too bad none of the advice works.

Click on the link below to learn why.

Why Caregivers Ignore All That Good Advice About Dealing with Stress and What You Can REALLY do to help.

 

 

What We Have is a Failure to Communicate

failure-to-communicate

You spend hours, days, weeks, months, years, becoming more and more isolated as caregiving takes over your life. Well intentioned friends and family who offered to help in the beginning drop out of your life as they tend to their own families and jobs.  When they do come to visit they see Mom or Dad on their best behavior. Somehow he or she is able to connect with reality long enough to convince visitors they are so much better than they really are.  They may even accuse you of abusing them or robbing them causing distrust and confusion within the family.

If only your visitors could see your parent beg to go home for hours or cower in fear because they no longer know who you are.

Fortunately there are now ways to make that happen and I encourage you to use them especially if your family members are too far away to visit often. They may not be able to come in and relieve you but they might be able to help in other ways once they see how much you are doing every day.

Don’t let distance keep family in the dark. The more they know the better chance you have that someone will step up to help.

Communication is key, no matter how you make it happen. Use any and all resources available to you including one or more of the ones listed below.

I urge you to take full advantage of video chatting to share your experiences and make it far more difficult for others to say, “I wish I had known how hard it was. I would have been there for you.”

Listed below are a number of resources to keep communication open.

Nucleus

Skype,

FaceTime,

Glide,

Tango, etc.

Email

Phone

Facebook

If you are using, or have used, any of the resources listed above to reach out to family and friends please share your thoughts on how well it works or worked for you. I look forward to hearing from you.

 

A Teen Encourages Others to Help

The following is a guest post by  Minaal Khan, an 11th grade student at John Champe High School in Aldie, VA.

As teenagers in the age of technology, we need to be less materialistic and spend time with people as well as our favorite devices. People are who make the world a better place and who provide beneficial social interactions. We need to stop ignoring people and start using devices less often. Helping people can make you a better, worldlier person. This will make you truly appreciate the world. Hearing about someone else’s life can inspire you and may even change you for the better.

Teenagers need to start giving back to the community and helping others. We are at the age that will define us as adults. If we do not start giving back now, we will never do it as adults. We need to be thankful that we are healthy and appreciate what the generation before us has done to ensure that we are raised properly. They left us a great world that we can make even better by spreading kindness and selflessness. Everyone deserves to have someone help them when they are in need, so we should be kind and care for people who may have neurocognitive disease.

Caring for people with Alzheimer’s helps you feel accomplished as you do something good in the world. It also reassures the person you were caring for that there is hope and kindness left in our world when so often all we see on the news is violence.

Caregiving is an act of kindness that the other person will remember and builds self-esteem. It does not require you to sacrifice several hours, you can also spend time with your friends or family.

Helping someone who has Alzheimer’s will also help the family of the person who has Alzheimer’s because they will know that someone is taking care of their loved one. They will not have to worry about finding a reliable caretaker which increases the cost of care.

Caregiving is extremely rewarding and can change the lives of many people, the caregiver, the person with Alzheimer’s, and the family of the person with Alzheimer’s. It also gives you a sense of accomplishment because you have made a change in someone’s life. We need to help others as much as we can.

 

Previous Older Entries