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

 

 

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 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.

 

4 Reasons People with Dementia Hate to Shower & How to Fix It

shower-head

1. You asked: When asked a yes or no question a person with dementia may not understand the question and automatically answer with a resounding NO to avoid agreeing to anything they may not want.

Why? Because it’s one of the first words we learn when beginning to speak. It’s short and powerful and it works if we repeat it often enough. Instead of asking, get everything ready and then gently say, “Your shower is ready,” and lead him or her into the room.

2. Room Temperature: When preparing the room make sure it is very warm. It may feel like a sauna to you but to someone who is frail it could still feel chilly. Make sure the water is warm also but make sure it isn’t hot. Test it as you would before bathing an infant. Have plenty of soft, warm towels at hand. Warming them in the dryer just before shower time is a good idea.

3. Modesty: Most of us have some body issues and are reluctant to have others see us naked and this could be especially true of an elderly parent being bathed by one of their children.  It’s perfectly okay to wrap a towel around their chest and one over their lap and bathe them through the towel. They maintain their dignity, stay warm, and get clean all at the same time.

4. It’s Scary: Imagine sitting naked on an uncomfortable seat in a little room with sounds echoing around you. You’re not sure why you are, how you got there, or what’s going to happen. Then all of a sudden something starts falling out of the sky and hitting you on your head, chest or back.

Dementia affects vision as well as memory and other functions. The person in your care cannot see the water falling from the shower head. It’s confusing and frightening and they want nothing to do with it. (Note:  The next time you shower pay attention to the water flowing from the shower head. How well can you see it?)

To help alleviate the fear and confusion use a hand- held shower head and start at their feet, moving very slowly up the legs, talking softly as you go along, have their favorite music playing if you can. Let them wash themselves as much as possible.

When bathing is complete wrap them in warm towels even before leaving the shower and remain in the warm room until they are complete dry and clothed.

Will this work all the time for everyone? Probably not. There will come a time when showers and baths are no longer possible and bed baths are the best you can do. Until then,  try some of these suggestions they may make things just a little bit easier for both of you.

Mesothelioma Caregiver: You Are Bold, Strong, And Not Alone

Welcome Guest Blogger, Nicole Godfrey, writer and community outreach associate for Mesothelioma Guide.

In the words of Brett H. Lewis, “Health is by chance – Caregiving is by choice.” Caregiving is a huge responsibility, but you must remember that you are only human. You must also remember that the person that you’re caring for is still the same person. Don’t let a diagnosis change your point of view about them.

Mesothelioma Guide is dedicated to helping mesothelioma patients thrive, which includes providing information and support to their caregivers.

What to Expect

There are several factors to take into consideration when it comes to assuming the role of caregiver. As a caregiver to a mesothelioma patient, your role is going to change as the patient’s disease develops. The patient’s state of health may improve or it may decline.

Here are a few responsibilities you may have

  •  Feeding, dressing, bathing
  • Managing medication
  •   Providing transportation

Your duties as a caregiver are to assist in the day-to-day activities of the patient. You will not only monitor their health and provide them companionship, but you will find yourself being a part of a big decision making process. You will help them make decisions about their treatments, their financial and legal issues, their insurance, and their end-of-life treatment.

Don’t Forget About Yourself

As a caregiver you are going to find yourself being a huge part of someone else’s life, but you must remember that you are an important factor to making your role successful.

It is completely ok to take a timeout and to assess the new responsibilities that you are having to adapt to.

Here are a few tips to any caregiver

  • Rest
  • Take care of yourself physically
  • Accept help from others
  • Seek the aid of respite help

Read Mesothelioma Guide’s blog for more information on how to take care of yourself as a mesothelioma caretaker.

Talk About It

You are going to find yourself being a whirlwind of emotions. You are going to be scared. You are going to be angry. And that is ok. However, don’t bottle up your emotions. Talking about the circumstances can be your best dose of medicine.

You can always talk directly to the person who you are caring for. By doing this, you can address any questions you may have. Also, this allows you and the patient to express how you are both feeling. However, if the person you are caring for doesn’t want to talk, or you find it difficult to talk to them, you can always explore the option of support groups.

Support groups aren’t just for the patient. Some of these groups are designed specifically to help caregivers. Support groups help a person to stay both positive and hopeful. A person can attend a support group meeting in person, by a phone conference, or online.

It has also been proven that support groups can

  • Reduce stress
  • Provide inspiration
  • Offer comfort

You must remember that you are not alone. Support groups are designed to create a community where people can talk about their disease or it gives caregivers a chance to express their concerns about caring for someone with a disease.

Sources:

Quote: https://www.goodreads.com/author/quotes/6546527.Brett_H_Lewis

https://www.mesotheliomaguide.com/community/caregivers/

https://www.mesotheliomaguide.com/community/the-nurses-corner-9-ways-mesothelioma-caregivers-can-care-for-themselves-too/

https://www.mesotheliomaguide.com/community/support/

Caregiver Support Coming to Purcellville, VA

I’ve been away from the blog far longer than I planned. However, being a caregiver and all that entails is never far from my heart and mind.  One of the most important and meaningful things I’ve been doing while away from the keyboard is training to be a Caregiver Support Group Facilitator through Alz.org.

Here are the details of where and when this group will meet.

Caregiver Support Group, Purcellville, VA, 20132

When: Thu, April 28, 3pm – 4pm
Where: The Carver Center, 200 Willie Palmer Drive, Purcellville, VA, 20132 (map)
Description: Alzheimer’s Association Support Groups Alzheimer’s Association support groups provide a place for people with Alzheimer’s, their caregivers, family members, and/or friends to share valuable information, caregiving tips and concerns throughout the Alzheimer’s journey. Groups are facilitated by trained leaders and are ongoing, free and open to the community. Please call our 24/7 Helpline (800-272-3900) or contact the facilitator directly for more information and to confirm date and time. The Carver Center | 200 Willie Palmer Drive, Purcellville, VA, 20132 | Bobbi Carducci, bcarducci@comcast.net

For information on where to fond a support group near you go to: http://www.alz.org/nca/in_my_community_support.asp

If you are a support group facilitator I’d like to hear from you. Perhaps you’d be willing to share resources or tips on what your group finds useful. If you attend a support group I’d love to hear about how your group has helped you.

Giveaway for Caregivers

Caregiver Bracelet

Free to Followers of The Imperfect Caregiver

(US Residents Only)

Caregivers need all the support they can get. One way to increase awareness is to show the world how many of us there are, including caregivers, those who have been caregivers, and those who may become caregivers.  Our numbers grow every day and will continue to increase until cures for Alzheimer’s, all the other forms of dementia, and traumatic brain disease are found.  One way to do that is to display our support for all to see.

To receive a free Caregivers Are Heroes bracelet: Follow The Imperfect Caregiver blog and send a request in the comment section below. Include your name and complete mailing address. Address will not be published on this site.   Requests may also be sent to me directly via email at bcarducci@comcast.net  No mailing costs or hidden fees apply. This is my gift to individual caregivers.  Current followers are eligible for this free gift.

Dr. Phil, we need your help! Please use your resources and that of the Dr. Phil Foundation to create a grant to help caregivers most in need receive the help and support they so desperately need.

To add your voice to mine contact Dr. Phil at www.DrPhil.com

 

 

 

Remembering Rodger

Rodger Carducci

 July 26, 1926 – July 26, 2009

001

A year ago today I celebrated with family friends the release of Confessions of an Imperfect Caregiver.  The day was one of joy mixed with sadness as were so many of the days I spent writing it. We chose to release the book on Rodger’s birthday to honor him and his life.  I knew when I decided to share our story I would experience again all the emotions of living it. I told Mike to be prepared for an emotional rollercoaster. He knew all too well what that meant. He lived it too and would have his own moments of joy and regret. However, we agreed it was important to speak the truth about what it’s really like to be a caregiver.

I was determined to be brutally honest. I included the good days, the days of precious moment of clarity and remembrance he chose to share with us. However, I  also share the many moments of anger and doubt. I cry and pray and vent the frustration that comes with doing the best you can in an impossible situation for someone who sometimes loves you but far more often resents you for trying to save them from themselves.

Caregivers often asked, “Why doesn’t someone write a book that shows what it’s really like?”  Confessions of an Imperfect Caregiver does that. Caregivers,  you know what it’s like. You live it every day. It is now my wish is to get into the hands of your friends and family members in the hope that, in reading our story, they will better understand your situation and offer to help in any way they can.

Confessions of an Imperfect Caregiver is for caregivers, those who may become caregivers, those who have been caregivers and those who may one day need care. I hope our story helps everyone understand that you don’t have to get it right every time in order to succeed and sometimes being a little bit crazy is exactly what is needed. Available via Amazon and Barnes&Noble. To purchase a signed copy you are invited to contact Second Chapter Books in Middleburg, VA (540-687-7016) or via email: secondchapterbks@gmail.com

 

#Dr. Phil – Change Will Happen

Change will happen Dr Phil

Someone posted the picture above on Facebook and I had to copy it and share it with you. Each night before I go to sleep I end my prayers by saying, “Show me the path you want me to take.” The road I end up on is often a lot longer and more difficult to travel than I would have hoped but I always end up exactly where I need to be. I have learned to pay attention to the messages I receive in response. Many, like this one, pop up in the most unexpected places.

On May 26, 2015 I watched a segment on the Dr. Phil Show where he featured young woman caring for her father who has had a devastating stroke. I was thrilled to see a caregiver being recognized. However, soon that feeling was replaced be deep disappointment and frustration when, instead of doing anything help her in any way, he offered her only the same trite advice caregivers know they should follow but have no means to do so.

Take care of yourself first. Get enough rest. Eat right. Exercise. Don’t feel guilty about taking time with friends.

I took a few days to cool down so I could respond without anger and on May 30, 2015 I issued a challenge to Dr. Phil to use his resources and the Dr. Phil Foundation to set up a grant program for caregivers most in need of help. You can the full text of that post here:

Dr. Phil- You Let Caregivers Down and I Challenge You to Do Better

Since then I have been contacting him regularly via his website and adding a few words to my nightly prayer,“Dear God, show me the path you want me to take. Show me the way to reach Dr. Phil.”

And what did I get on my Facebook page but a clear image of a path captioned with this message: “Change will happen because you MAKE IT HAPPEN.” #DRPHIL

I am now more determined than ever to continue contacting Dr. Phil and do everything I can to convince him to get started on the path to establishing that grant.

In order to amp up the volume I ask that you add your voice to my efforts. Let him know I am not alone in asking for help. Please go to www.DRPHIL.com and encourage him to accept the Dr. Phil Challenge. Feel free to include a link to this post.

 

NO!

No

NO! Two letters that exude tremendous power. It’s easy to say and has a huge impact. It soon becomes a favorite word for people in our care.

It’s time to eat. Are you hungry?

No.

It’s time for bed. You need to rest.

No.

Bath time.

No!

Food they loved yesterday they want no part of today. Bedtime becomes something to be avoided at all costs. Take a bath? At the very suggestion a temper tantrum is bound to ensue. This is how it often is for them and for us. And it’s so damn frustrating for everyone. Admit it, you get mad. You begin to think they are doing this on purpose to get back at you for some unknown reason. You want to cry and scream and throw a tantrum of your own. I did. I did all of that and it didn’t help one damn bit. And after my little tirade had ended the guilt set in. How could I behave like that? He was sick. He couldn’t help it. What was wrong with me?

The answer to that is, nothing. Nothing was wrong with me and nothing is wrong with you.

The fault can be found in this quote from the 1967 film Cool Hand Luke

“What we’ve got here is a failure to communicate.”

People with dementia often do not understand the question and don’t know what to say in response and as a result take the easy way, or in this case, the easy word, out. NO becomes automatic.

When they can’t tell us what they are thinking or feeling their behavior becomes their way of communicating. What would you do if you couldn’t tell someone you were hungry, afraid, cold, or too hot? What if they kept asking you questions in a language you could not understand?

I know I’d become angry and want nothing to do with them. I’d dig in my heels and refuse to cooperate. I’d also hope that someone somewhere would figure out what I needed or wanted.

Sitting here now, writing about it instead of living it every day, I hope to be able to help you.

Diffuse, diffuse, diffuse, is always the answer. Like everything else in dementia world it isn’t easy. It’s simply what is.

If they say no to food take it away and offer it again a half hour later. Don’t ask if they want it, put it in front of them and walk away. If they have to be fed, get them ready and start feeding them. If they refuse again walk away again. Go back a half hour later and say, “I prepared the food you asked for. Here it is.” This worked for us until it didn’t. There came a time when he stopped eating altogether. It broke my heart and it will yours too but it happens when they are preparing to go. It’s time for hospice.

The sleep problem is one of the hardest for us all. They need and want less sleep, we need more in order to care for them and ourselves. If you are alone in this you have to rest when you can. If that means the housework goes, so be it. I wish I had an answer for this. I don’t. If anyone does, please post it here.

Rodger would refuse to bathe and wear the same clothes for days at a time. He would begin to smell bad. He insisted that people in the Old Country (Italy) don’t wash as often as people in America. There was no convincing him otherwise so I stopped trying. He would take a shower and change his clothes before going to the doctor. I used that a lot. He never realized he had a lot of canceled appointments after bathing. Sneaky but effective.

When he could no longer shower by himself I would start the water running, put his shower seat in the tub, and warm some towels in the dryer and lead him into the bathroom. When he saw everything was ready he didn’t resist. This may not work for everyone but it may work for some.

I recently read that water is invisible to some people with dementia. They don’t want it on them and they don’t want to drink it. I don’t blame them. I wouldn’t want some invisible substance pelting me either. Nor would I want to put something I couldn’t see into my mouth. It’s up to us to figure out a way to help them understand what’s happening. Use a shower wand and let the warm water flow over their feet until it is okay to move up the body. Keep the spray away from their face. If modesty is a factor allow them to shower in their underwear. They will get clean, the underwear will get wet and they will take it off and put on a clean set.

When it comes to drinking, try adding a few drops of juice in the water to give it some color.

Even if you try these things and they work, the NO! won’t go away entirely and all of this may be a bust for some of you. I understand that your situation is as unique as the person in your care. If there were a magic answer we’d all use it and this blog would go away. I’d miss it but I would celebrate too.

If you have a tip, a hint, a suggestion that works for you I invite you to share it in the comment section. We need all the help we can get and we need each other. Blessed be.

Don’t let Dr. Phil say NO to the Dr. Phil Challenge. Join me in pinging on him to use his resources to establish grant funds to help caregivers who need it most. www.DrPhil.com

 

Previous Older Entries