When Becoming a Caregiver Comes Sooner Than Expected – Julie’s Story

Dementia isn’t a disease that hits all at once. It is progressive and often goes undetected in the very early stages.  People adapt to small changes in memory or believe it is simply another sign of aging. Often, someone is embarrassed to tell friends and family they have a problem until it is impossible to ignore, leading to the need for difficult choices to be made on behalf of all involved.  Julie knew she would be there should one of her parent’s need help. She didn’t know how soon it would be her reality or how deeply it would affect her.

RodgerThat – Podcast for Caregivers

I am proud to share the exciting news that I am now a co-host, along with my husband, Mike, of a podcast named after my father-in-law, Rodger.

RodgerThat.show is the podcast dedicated to guiding you through the heavy haze of dementia. A new episode goes live each week on Tuesday.
Here is link to an episode where we respond to some questions from caregivers like you who are seeking help on the difficult days that occur for all caregivers.
Managing Behaviors and Emotions with Bobbi and Mike
Your questions and comments are always welcome.
Bobbi Carducci, Certified Caregiving Consultant, Certified Caregiving Educator, International Speaker on Caregiving Issues. http://www.bobbicarducci.com

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 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

 

 

 

 

I Don’t Like You!

I don't like youWhen it’s one of those many very bad days and you the person you are caring for is pushing every button and grating on every nerve it’s natural to feel resentful and truly dislike her or him.

It’s okay to feel that way. Most of do more quite often thorough this life changing time. However, anger and resentment take a toll on us mentally and physically.  It’s exhausting to deal with all that emotion on top of everything else you do.

What is a caregiver to do on days like that?

  1. Walk away from the person in your care.
  2. Go to a quiet place. Go to the bathroom if that’s the only place you can be alone.
  3. Take a deep breath, let it out slowly. Repeat, Repeat. Repeat. Keep repeating until you feel calm.
  4. Think of one of the very best days you ever had with your caree. Picture it in your mind. When you are ready, perhaps when you being to smile, or cry, or simply wish for that day back, go get a cup of coffee or a glass of water.
  5. When you are ready – share that memory with your love one. Hold his or her hand if they are open to it. If they are not in a mood to share just then, it’s okay. You took a bit of time to take care of you. And maybe you have planted a seed in your caree’s memory that will take root later and give them a precious moment as well.

Fireworks and Sundowning – Not a Happy Fourth of July

fear of light

As if sundowning weren’t a challenge for those with dementia and their caregivers we add fireworks to the mix on July 4th each year. A person who once loved fireworks may respond differently now. For someone with dementia, the loud pops and explosions can trigger memories of wartime experiences causing a return or worsening of PTSD (Post Traumatic Stress Disorder). Even someone who never went to war can be deeply affected by these annual displays. The flashing lights and changing colors in the sky can trigger fear leading to aggressive behavior that can be dangerous for the caregiver and their family member. Between the community events and backyard enthusiasts, the noise and confusion can often go on for hours. While some are calling for the ban of fireworks all together others are reluctant to do away with the long held tradition that they grew up with. It’s not an issue that will likely be resolved soon. However there is some good news. Many communities are becoming more aware of the impact fireworks have on those with dementia and are taking steps to minimize the impact by using quiet fireworks that focus on colors and effects rather than sound. It may not be a complete fix but it’s a step in the right direction for many.

If that is not the case in your area, here are a few suggestions that may help make things less stressful for you and your family.

  1. 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.
  2. Encourage them to talk about fireworks. Were they exciting and fun or too loud and scary?
  3. 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.
  4. Early in the day may be a good time to show them a video of fireworks. There are a number links of the displays available for viewing on social media. 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.
  5. 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 earbuds or head phones if possible to mask the noise. If these devices are not available or practical in your situation, play the music anyway and sing or dance along with it to distract them, they may even join you.

Behavior is communication and their actions always include clues as to where they are and how they feel. It is when we enter their world rather than insisting they live in our reality that true understanding comes to us, the caregivers.

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, 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.

Please share your thoughts in the form provided

A Teen Encourages Others to Help

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

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

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

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

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

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

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

 

Previous Older Entries