A Care Giver Asks: Why Does Mom Refuse to Enter the Bathroom?

This caregiver went on to say,  I’m having big problem. Mom refuses to enter the bathroom at all. She stops at the entrance and will not move.  She wears Depends  so toileting isn’t the issue. She refuses to go in to take a shower or even to wash her hands or brush her teeth.  I am baffled by this new behavior and don’t know what to do about it.”

The only constant in dementia care is that things can and do change, often at a moment’s notice. What is important for us to remember is that we have to enter their world.

Here are a few suggestions that may help:

Enter the bathroom and look around as if seeing it for the first time.

What do you see?

Is there a large mirror reflecting your image? People with dementia often don’t recognize themselves in a mirror. The old man or woman reflected in the glass can be frightening when memory has taken her or him back in time.

An easy fix for this is to cover the mirror with a towel.

 What do you hear?  

The acoustics in bathrooms often result in echoes when people speak in loud voices or the taps are turned on.Play some soft, soothing music to cover the everyday sounds we have become accustomed to.

What do you feel?

Is it a bit chilly and damp?Use a space heater to make sure the room is warm. Towels and washcloths should be soft and fluffy.  Older people have thin, often sensitive skin.

What do you smell?

A mix of aromas from soaps, shampoo, lotions, and perfumes may overwhelm someone with dementia. Try switching to scentless products and see if it makes a difference.

One or more of these suggestions could work for you and the person in your care. If not, it may be time to let go of traditional bathing and oral hygiene and go to bedside baths with a cloth and a basin of warm water and switching to a soft sponge oral hygiene swab instead of a toothbrush.

Bobbi Carducci

 

 

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A Caregivers Asks: Does Anesthesia Make Dementia Worse?

It can. It doesn’t always. This ambiguous response is true of many questions regarding what happens when someone has Alzheimer’s disease or one of the many other forms of dementia. What is true for one person is not true for many others.

Some factors that can have an effect on whether or not someone experiences cognitive decline after general anesthetic are:

Age – The older we are, the more vulnerable we are to side effects of anesthesia. Our brain, like the rest of us does not respond in the same way it once did.

Medical Conditions and Medications – The more health issues one has and the more medication one requires the greater the chances of cognitive decline with the added stress of surgery.

Loss of Blood – Blood loss during surgery can reduce oxygen flow to the brain resulting in cognitive impairment.

Type of Anesthesia Needed and What Procedure has to be Done – Depending on the circumstances, the surgeon may need to use heavy sedation over a relatively long period of time increasing the chance of a negative reaction.  For less extensive procedures, he or she may opt for a spinal block and twilight sleep. Doing this could lessen the risk of cognitive decline.

Pre-existing Dementia – Dementia is a devastating brain disease and any procedure that causes increased stress on it could result in changes in function.

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It is important to note that often the cognitive changes seen immediately after surgery and anesthesia are temporary. For some patients there can be a partial return to pre-surgery state with more minor losses remaining.

It is also important to speak openly about your concerns and to work with the physician to formulate the best plan for the needs of the person requiring surgery. Despite the risks, the procedure may have to go forward in order to save the person’s life. And remember, the surgeon and medical staff want the best possible outcome as much as you do, and will do their best for their patient.

For more information on anesthesia and dementia click on the following links: http://health.sunnybrook.ca/brain/surgery-and-dementia, https://www.scientificamerican.com/article/can-general-anesthesia-trigger-dementia/; https://www.dementia.org.au/files/helpsheets/Helpsheet-DementiaQandA20-Anaethesia_english.pdf

Bobbi Carducci The Imperfect Caregiver

A Caregiver Asks – How Do I keep Dad From Driving?

We all know that eventually the day will come when it will no longer be safe to drive however, the word eventually means we don’t have to face it for a long time.  Unfortunately for some, it comes sooner than we think and under circumstances we didn’t consider when first taking the wheel and heading off down the road.

When someone has dementia or has had a stroke or traumatic brain injury, that day can arrive sooner than cognitive impairment can process the change or how much danger they can be to themselves and others. This often leads to denial, anger, and a lot of lashing out at the person standing in their way.

When that day comes for your loved one:

Try to include him in the decision process. Have someone he trusts with sit with him and go over the dangers in continuing to drive. Deciding on his own is better for him than having his licensed revoked due to an accident. Even if he was not at fault he could be sued resulting in not only losing his license but serious financial loss as well.

It’s important to understand that this is an issue that must be addressed. Check with your local and state police for information on the law in your area. In many places, if you are aware the person in your care has cognitive impairment and you know they are driving, it could put you and your assets at risk.

Here are some suggestions on what to do when faced with this issue:

  1. Let him know you are on his side. You are not taking this from him. “Dad. I know this is important to you and always were a good driver. Let’s see what we can do about this.” Then call his doctor.
  2. Have the doctor speak with Dad. Some people are conditioned to follow a doctor’s advice.
  3. Once confirmed by the doctor that he should not be driving and he still insists on getting behind the wheel, arrange for him to “lose” his license. (Hide it.)
  4. Again. Let him know you are on his side. “I’ll call the DMV and make an appointment so you can get a new one.” Inform the person you speak with that he has dementia. Arrange for him to have a driving test. If he resists remind him that this is a chance to show them he can drive. When he fails the test, let the DMV revoke his license. Be supportive when he gets upset. “I know this is hard and you are angry. I would be angry too.” Acknowledge his feelings and his right to express them.
  5. If he still insists on driving, keep all keys where he can’t get them. If possible move the car somewhere he can’t see it.

A driver’s license represents independence and freedom. We drive out of necessity and we drive for fun. No longer being able to get in the car and go can require a mourning period. Validate his feelings of loss.  If his anger spirals out of control go into another room and lock the door until he calms down. If necessary, call law enforcement to assist you.

Note: The regular contact form will not post. To reach me send an email to:  bcarducci@Comcast.net

www.bobbicarducci.com 

 

Medicare and Respite Care – What Does it Cover?

When it comes to our loved ones that may be living with health conditions that hinder their ability to perform everyday functions, we want to provide them with the best care. Statistics show that often, it is a family member that takes on this role as a full-time caregiver.

Being a caregiver is one of those jobs that not everyone can do. It requires compassion and patience in addition to nurturing and problem-solving skills. The role as caregiver can often be stressful and daunting, which is why respite care exists: to give full-time, at-home caregivers a break when they need one.

What is respite care?

First, let’s define and outline what respite care is and why it’s beneficial. Respite care can come in many different forms and can last for either hours or even days, depending on the situation. Respite care can take place at home or in an inpatient hospital, long-term care facility, or an adult day care center.

Respite care providers are trained and qualified to handle managing basic living activities and functions for those disabled or medically unable. In addition to basic care, respite care providers can administer medications and even tube feedings. For those extremely ill, a registered nurse can serve as a respite care provider.

Not only is respite care beneficial for the primary caregiver needing a break, but many seniors needing extra support and medical attention enjoy seeing new faces as they receive their care.

Does Original Medicare cover respite care?

Medicare does pay for respite care under Part A as part of your hospice care benefits. However, Medicare only pays for respite care when the person in need has a prognosis of six months or fewer to live.

Additionally, a signed statement is required declaring that the beneficiary is choosing hospice care instead of medical treatment for the terminal disease. Another thing to note is that Part A hospice care generally only covers respite care in a hospital inpatient setting.

If the beneficiary has been admitted to a hospice program, Medicare Part A will pay for up to five days of inpatient respite care at time. However, sometimes you may be required to cover a 5% coinsurance amount. Beneficiaries who are covered by a Medigap plan may have this 5% covered for them.

Respite is only covered on an occasional basis, so be mindful of how frequently you use these benefits. Medicare guidelines don’t clearly specify what qualifies as “occasional,” but Medicare typically approves most respite care for hospice patients.

What is covered under a Medicare Advantage plan?

As explained above, Original Medicare will only cover respite care under necessary conditions and Medicare-approved hospice benefits. However, about one-third of beneficiaries are enrolled in Medicare Advantage plans instead of Original Medicare.

Medicare Advantage plans are required to provide the same services as Original Medicare, but since these plans are entirely separate from Original Medicare and are private plans, they have the freedom to provide additional services that Original Medicare does not.

As of 2019, Advantage plans can now offer a variety of in-home care services, including respite care. Some Advantage plans will cover respite care in the form of in-home care, adult day care and short-term respite care in an approved facility.

Each plan that chooses to include these benefits will allot a certain dollar amount or number of hours of respite care that will be covered each year. Since every Advantage plan is different, cost and hours coverage may vary for respite care.

The great thing about this is that under certain Advantage plans, beneficiaries have more freedom when it comes to their choice of care.

Conclusion

It’s never an easy situation to be in when a loved one needs hospice care or any kind of additional medical attention. The advances that CMS is making with allowing coverage of respite care is a breath of fresh air for many families. Although advances to respite care coverage are being made, it’s always a good idea to really assess the situation before dipping into those benefits, no matter what kind of Medicare plan you have.

Much like everything else under Medicare, it is always recommended that you call a professional or your insurance provider to confirm what is covered and what isn’t covered before getting locked into an insurance plan.

Thank you, Danielle Kunkle for contributing this article today.

 

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?

 

 

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.

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