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.

 

A Caregiver Asks – Mom Refuses to Change Her Clothes – What Can I Do?

clothing

Mom refuses to change her clothes? It’s been four days!

Five reasons why this often happens and what may help change her mind: 

  1. She thinks she just put them on. Days may run together for her and sometimes her mind has taken her back in time. Try telling her the day of the week and suggesting it’s time to change her clothes. “Good morning, Mom. It’s Monday, clean clothes day.” If she resists, don’t insist. Give her time to think about it. She may surprise you later by changing her clothes on her own. It’s become her idea.What is four days to you could be only moments ago to her.
  2. She doesn’t understand why you are trying to take her clothes from her. She is warm and comfortable as she is. She may have body issues, (don’t we all) and not want you to see her unclothed. Set out some clean clothes and walk away. Curiosity may result in her checking them out and trying them on. Again, don’t insist. Let it become her choice.
  3. She doesn’t remember how to take them off.  Buttons and snaps are hard for her. She can’t figure out how to get her arm through a sleeve or the leg of a pair of pants. Dementia friendly clothing is available for women and men from sites like this and others: https://www.silverts.com
  4. She can’t tell that they are dirty.  Dementia affects vision and her clothes look fine to her. People with dementia often have very limited peripheral vision. When she looks down, it’s like looking through a pair of binoculars. She can’t see that her shirt has multiple stains. Gently tell her that there is a spill that may stain and suggest she put the item in the laundry. Now she is doing something she has done many times, putting clothes in the laundry, and you are not making her change her clothes.
  5. She doesn’t recognize what a shirt, a pair of pants, or skirt are.Muted colors are sometimes hard for someone with dementia to see. Try laying out clothing in bright colors. Reds, deep blues, yellows, greens, and purples for instance. If her selections clash, who cares? They are clean and you have avoided some stress. Things of different shapes and sizes that move on hangers when she tries to touch them frighten her. Too many choices confuse her.

Note: These suggestions may work once or twice and then never again. Some may not work at all for you. However, giving them a try may help and can’t hurt.

If you have a suggestion for other caregivers, please post it here. Caregivers get it in a way no one else can.

Bobbi Carducci is a Certified Caregiving Consultant, CCC and a Certified Caregiving Educator, CCE.  To schedule a FREE 30 minute consultation or for details on how to schedule a presentation, send and email to info@bobbicarducci.com

 

 

4 Disturbing Dementia Behaviors and How You Can Go From Frustration to Connection

fromfeartolove

Often the behavior of someone with dementia is so changeable and unpredictable it’s almost impossible to figure out what is going on, leaving the caregiver confused and frustrated. Why is your spouse confused with you and so alert when someone comes to visit? Why does your mother, who is usually calm and agreeable, suddenly become angry and aggressive? “Why do you do that?” you may ask.

Alzheimer’s and the other forms of dementia are devastating brain diseases. Connections affecting behavior and memory work intermittently in the mild to moderate stage resulting in good days where one might question they even have the disease to bad days when their world and yours seem to spin out of control with no warning.

Their brain is sending them messages as real to them as your thoughts are to you. The person with dementia is terrified. The caregiver is at her wits end. The situation can escalate and sometimes may even become dangerous. What just happened, you may wonder. Things were fine a moment ago.

Take a few deep breaths to calm yourself. People with dementia may not understand your words but they do sense your emotions. If you are tense their tension will rise creating a worsening situation for both of you.

Try to determine what their behavior is telling you. Behavior is communication. Body language can speak volumes when words fail. Here are four examples of common dementia behaviors and how your response can get you from frustration to connection:

  1. One moment Mom is happily sharing breakfast with you and the next she is terrified of the stranger sitting across from her. No matter how hard you try, you cannot convince her who you are and that she lives with you now.
  2. Mom not recognizing you tells you that her brain has taken her back in time. Ask her how old she is. If she is in her thirties and you are still a child, go there with her. Smile, tell her your name and ask her to tell you about her child. Share some of your memories from that time. You may end up having some precious moments with her.
  3. Your father, who celebrated his retirement five years ago by playing golf as often as possible, is now demanding you give him the keys to his car so he can get to work on time. His job was important to him and was a way to show his love for his family. Tell him it’s the weekend or his day off. Ask him what he has planned for the following week and listen to his ideas. Let him know how much you appreciate all he does for his family.
  4. Your loved one keeps trying to get out of the house insisting she wants to go home even though she is home and you moved in to take care of her. When someone with dementia wants to go home you may think she is referring to the last place she lived. However, it could be her childhood home or the first apartment she had as a newlywed. It could be that she doesn’t feel safe in the moment and needs the feeling of comfort that being home brings to everyone. Tell her that she will be home soon and ask her to tell you about her favorite room. You may be surprised at where she is. Wherever she thinks of as home, go there with her. If you have any pictures from that time or place show them to her and spend some time listening to her stories. You may learn some surprising things about her and her life before you came along.
  5. Every evening like clockwork, your husband begins to pace the floor and mumble incoherently, becoming more and more upset as he tries to make you understand what he’s trying to say.Trying to understand someone whose words are incomprehensible is extremely hard. You would respond if only you knew what he was trying to tell you. The harder you both try to communicate the more frustrated you both become. You won’t suddenly become fluent in his language. In this case your words are not as important as your tone and body language. If he is agitated you need to create distance between you and speak quietly, assuring him you understand. You may not, but that’s okay. The feeling of being understood is what’s important here. Smile and nod in agreement as he begins to relax. If he sits, you sit. Mirroring his movements is communicating in a way he can see. In time you may even begin to understand one another better.

There is never an easy answer, or one that works every time for everyone. However, going into their world works better than trying to get them to understand ours.

Bobbi Carducci was a caregiver for her father-in-law with dementia for seven years. She is a caregiver support group leader, blogger, author of the book, Confessions of an Imperfect Caregiver, Caregiver You Are Not Alone, and national speaker on caregiver issues. www.bobbicarducci.com www.theimperfectcaregiver.com Twitter:@BobbiCarducci2  Facebook: https://bit.ly/2FXw3JP

 

 

 

 

What’s Love Got To Do With It?

broken heart

When it comes to care giving, sometimes love doesn’t enter the picture at all. People with dementia behave in ways that try us to our very limits. Waking each morning wondering what new hell this day will bring causes anxiety, resentment, grief, and anger.

You may have loved your parent, your spouse, your sibling, or your grandparent for many years, but when dementia takes over and the person you knew is gone, replaced by a stranger trying to escape from you, refusing to bathe, and accusing you of all kinds of terrible things, love can be forgotten. Sometimes it’s gone for only a moment or a day or two. Sometimes it dies leaving duty in its place and we grieve while they still live. Sometimes we pray for the end to come and are overwhelmed with guilt for even thinking such a thing.

However, it’s not death we wish for, we don’t really want that.  We wish for the pain to end.  Theirs and ours.

It is because we care that we started this journey.  It is because we care we carry on when we think it’s no longer possible, even when we wake up each morning wondering what new hell this day will bring.  For deep inside they remain who they once were and so do we. We rise and enter their world ready to keep them safe another day.  And that’s what love’s got to do with it.

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National Family Caregivers Month – Tell Them You Need Help

Spread the word. Let everyone you know how many of us there are and how much we need their help. Don’t be shy. When someone says, “Let me know if you need anything.” Give them something to do.

Here are some suggestions:

Visit once or twice a month for thirty minutes so I can shower and rest for a few minutes.

Call when you are going to the grocery store and ask if we need anything.

Cut the grass or rake the leaves in my yard.

Once a month provide a meal so I don’t nave to cook.

Take my car to be inspected or pick up prescriptions at the pharmacy.

Be my friend when I need to vent and please don’t judge me when I am at my most vulnerable. This is harder than I ever imagined and I am doing the best I can.

What would you add  to the list above? What will you say when well meaning people say, “Let me know if you need anything?”

Four of the Saddest Words Ever Spoken

She doesn’t remember me.

I hope my children never have a reason to say them. But it could happen. If it does I hope they understand that even in my confused mind they are still a part of me.

By the time I reach that point I will have lost much already.

My short term memory.

My rich vocabulary.

My love of long, hot showers.

My ability to cook.

My driver’s license or even how to find my way home if I did still have that privilege.

 

I pray I’ll still have the ability to read and understand the words my favorite authors have so painstakingly crafted. A world without books would be barren indeed for someone who loves to read as much as I do.

Alzheimer’s or some other form of dementia will have taken me somewhere back in time.

Perhaps I am reliving my days as a busy young mother and you, my darling daughter or son, are still in elementary school. You have not yet grown into the wonderful adult you will become.  I see you pink cheeked and out of breath after running up the steps, opening the screen door, and calling out, “Mom, I’m home. Guess what I got on my spelling test today!”

It may not seem like it in the moment but the memory of you is deeply implanted in my heart. The heart that beat so close to yours during the time I carried you. The heart that cried with you when you were hurt and rejoiced with you when you achieved a goal.

If the day comes when I look at you and ask, “Who are you?” I hope you will smile, give me your name, and tell me about your mother.

I love you. I pray you never forget that.

Dr. Phil: Please help support caregivers via the Dr. Phil Foundation. Caregivers are in desperate need of respite and you can help make it happen.

Caregivers Are Strong Enough

strength Caregivers are among the strongest people you will ever know.   Caregivers Are Heroes. Help me raise awareness of how many caregivers there are and how fast their numbers are growing. Request your FREE Caregivers Are Heroes Wristband and wear it with pride.  All you have to do is send your name and complete mailing address to bcarducci@comcast.net. (Available in the U.S. only) No shipping costs or hidden fees apply.

Caregiver Bracelet

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