Respite Care – A Necessity for Caregivers

I am always seeking information about respite care and I am pleased to have received permission to post a link to a piece originally posted on Caring.com.

Respite Care: 8 Ways to Get a Break from Caregiving

What they are and how to find them
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If you have a tips or resources for finding respite care please share them by commenting on the form below.

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Dementia and SEX – Let’s Be Honest It Happens

Source: Dementia and SEX – Let’s Be Honest It Happens

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

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?

 

 

Show Don’t Tell – A Writer’s Advice For Caregivers

For writers, show don’t tell is the difference between: “John was being aggressive. Jane was frightened.”

And: “Stop! It’s me, Jane. I’m your daughter.” Jane ducked as the antique lamp whizzed through the air, missing her head by less than inch.

In the first example family members are left to fill in the details of what is going on. In the second one we see that John is out of control and Jane is in real danger. We feel for her and we want to help her in some way.

Showing your distant family members what you are dealing with on a daily basis may elicit a very different response than your telling them about the vile language your mother spews at you when you try to get her to eat. Or how she refuses to bathe or change clothes and hits when you try to calm her. They insist that the sweet woman they know would never act like that. You must be making it up.

You could provide example after example of the chaos dementia causes. How exhausting it is to be sleep deprived for months. How mean someone who raised you can be. How desperate you  are for a bit of understanding, a moment of peace and still they don’t get it.

So often I hear caregivers say, “Only someone who has done this can really understand what it is like.”

It’s true. What dementia does to a person cannot be expressed in mere words. So what can you do?

Show them.

Use the video camera on your cell phone as a way to communicate with your family. Brief clips of every day behavior can be emailed in moments. Show the anger and aggression, the refusal to eat and bathe. Let your family see what happens when their loved one is hallucinating and how dangerous things can get. Show your family how hopeless you become. How much you need help and understanding.

Nothing I suggest works for everyone  but at least your family will have seen for themselves what it’s really like to be a caregiver. It can’t hurt. Might help.

 

 

 

Fireworks and Sundowning, Not a Happy 4th Of July

As if sundowning weren’t enough of a challenge for those with dementia and their caregivers we add fireworks to the mix on this day.

Here are a few suggestions that may help make things a bit less stressful for you and your family.

  • Talk to the person in your care about the holiday and what it means to him or her. Listen to their stories of picnics past and how they showed their pride in their country.
  • Encourage them to talk about fireworks. Were they exciting and fun or too loud and scary?
  • Even someone who once loved fireworks may react very differently now. For veterans the effects of sundowning and the popping sound may bring back the trauma of battle. In either case it helps to prepare before the explosion of sound and light begins.
  • If you live near a place where you see and hear fireworks from your home you should prepare them for what will happen. They may not remember later but you never know what will help on day like this and it’s worth a try.
  •  Early in the day may be a good time to show them a video of fireworks. Here is a link to many of the displays available for viewing on YouTube http://bit.ly/2tHZa1q. Turn the sound off before showing it to the person in your care.  Explain that they may see these lights in the sky later that night and you will sit with them until it’s over.
  • If even the silent display is upsetting, close the blinds and drapes in their room before sunset to block out the flashing lights. Play music he or she likes using ear buds or head phones if possible to mask the noise. If these devices are not available or practical in your situation, play the music any way and sing or dance along with it to distract them, they may even join you.

I hope these tips help, they are among the things I did as a caregiver. Sometimes Dad was fine and other times  the 4th of July was a very long day indeed.

If you have a hint or suggestion that may help others, please share it here.

 

 

 

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.

 

Caregivers Need Help

Advice for caregivers almost always includes a list of signs of caregiver stress and tips on how to address them. As well-intentioned and correct as the advice is, the unfortunate result is an actual increase in caregiver stress.

Why? Because it puts the burden of fixing the problem on someone who is already overwhelmed. Caregiving is a 24-hour a day, seven days a week job, frequently lasting for several years, that becomes more demanding as time goes on. Of course caregivers are stressed. Giving them a list of things they know they should do but can’t isn’t helpful. In fact, it confirms their sense of isolation and adds to their feeling that no one understands what it’s like to be a caregiver.

A typical list of signs of caregiver stress include the following:

Depression

Anxiety

Anger

Loss of Concentration

Exhaustion

Isolation

 

No one would willingly ignore these intense feelings. Caregivers are often dangerously overburdened and desperate for relief. They cannot overcome these issues alone.  They need your help.

 

They cannot, as advised in the usual list of advice that follows the one above, put themselves first, exercise regularly, maintain a healthy diet, meditate, go on vacation, get enough rest, and go to a caregiver support group, if they are doing it alone.

 

According to Alz. Org  “Alzheimer’s takes a devastating toll on caregivers. Nearly 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high; about 40 percent suffer from depression. One in five care contributors cut back on their own doctor visits because of their care responsibilities. And, among caregivers, 74 percent report they are “somewhat” to “very” concerned about maintaining their own health since becoming a caregiver.”

 

What you can do to make a difference:

Acknowledge it takes more than one person to provide constant care. Set up and maintain a schedule of regular visits to the caregiver and the one in care in order to make sure both are doing okay. Spend the night once a month so the caregiver can enjoy some uninterrupted sleep.

Take over routine tasks like grocery shopping, vacuuming, getting the car inspected, cutting the grass, or doing the taxes. If you cook, make extra and deliver an easy to heat up meal now and then.

Spend time with the person in care so he or she is comfortable with you so the caregiver can go to her own doctor appointment, get a haircut, or simply spend a few quiet moments to herself.

Understand that someone with dementia may seem fine during your visit and confused and combative when you leave. The caregiver is not exaggerating the seriousness of the situation. Listen and allow the caregiver to vent.

Even the smallest bit of help can make an enormous difference to one who is doing the best they can to cope with a devastating illness that challenges the caregiver and the one in care every single day.

To help caregivers deal with stress, forget the lists and go to them and say, “I know this is hard, I appreciate what you are doing, and I’m here to help.”

 

 

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.

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