A Caregiver Asks: My loved one refuses to eat. What can I do?

 

There can be a number of reasons why someone in your care becomes reluctant to eat. Listed below are some common reasons, with suggestions that may help make meal time less of a struggle for both of you. Also included is an explanation of what can happen at end of life and why it’s best to not offer food or drink at that time.

He or she is not hungry. Most of us have faced meal times when food doesn’t seem at all appealing and we turn up our nose at everything.

If this happens occasionally, it’s okay. You may want to wait an hour or so and offer food again. If they take it, great. If not, don’t insist. If it’s a temporary lack of appetite he or she will eat when hungry and the problem will fix itself.

Often someone in care isn’t able to communicate that they don’t feel well. Perhaps they have a sore throat or an upset stomach and eating is uncomfortable.

Instead of their usual meal, offer something soft and easy to swallow, perhaps some Jell-O or ice cream. A vanilla milkshake is soothing and has nutritional value too.

When eyesight is not as acute as it used to be it can hard to see what is on the plate. White food on a white plate can be a problem for someone who can’t see muted colors.  Dark colored food like tomato sauce or a beef patty, can be hard to see on dark colored plate.

Try using a red plate for light colored food and a white plate or bowl for food that is dark in color. You may be surprised by how well this works.

Those with Parkinson’s disease and other illnesses that cause tremors often have trouble getting a spoon or fork from plate to their mouth.

It’s now possible to purchase eating utensils that self-correct when tilted. Being able to feed oneself again can increase self-esteem and appetite. For information about these devices go here: https://bit.ly/2KeCzQN

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There comes a time at end of life when people will no longer want to eat or drink. It’s a common part of the process and is much harder on the family than the person we are caring for.  We worry that they are starving to death and may insist they try to eat.  The truth is they don’t want it and processing food be uncomfortable for them as the digestive system shuts down.

Unfortunately there is no fix for this. It is something that we have to be aware of and prepare for as best we can, knowing that they are not suffering from their lack of sustenance. When that time comes, try to recall this information and take comfort in knowing you were there for them when they needed you and soon they will be at peace.

Bobbi Carducci

 

 

 

 

 

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A Caregiver Asks: How Do I Take Care of Myself?

When your daily routine is regulated by the needs of another and your work day is often 20 hours long or more there is barely a moment to think. Taking time for yourself when you are a caregiver looks very different than what other people may think

Well intentioned people don’t understand that admonishing a caregiver to add one more thing to the long list of things they have to do adds to their stress.  Caregivers, who are often the only person providing care, are lucky to get a shower and comb their hair each day let alone schedule a doctor appointment, meet a friend for lunch, or sit quietly and read a book.

So what can a caregiver do? Here are some suggestions that take only moments and may help.

  1. Sit down and breathe. Breathe in deeply for the count of four, hold for the count of four, and let it out for the count of four. Repeat these steps five times. These few moments of deep breathing will help your body let go of some of the stress it is experiencing. Even a little relief is a good thing and will help you get through the day. If you can’t find time to do this at any other time, do it when you are in the bathroom. A place where you can finally be alone.
  2. Put on music that you like. Happy and upbeat or soft and slow. Music playing in the background will give your mind a break from the details that run through your thoughts all day and night. It may even bring you a moment of peace or a happy memory. If it doesn’t work the first time, keep doing it anyway. One day you may start humming along.
  3. Cry. What you are doing is so hard and so all-consuming it is normal to be exhausted physically and emotionally. Let it out. Crying is a healthy way to let go of some of the anger, frustration, fear, and grief that come with being a caregiver. Cry as often, as loud, and as long as you feel the need.
  4. When anyone asks if there is anything they can do to help, give them a job. Tell them exactly what you need at that moment. It could be fifteen minutes to shower and wash your hair. Or a hot meal you don’t have to cook. Many of us need someone to listen and not judge as we vent. Whatever you need, don’t hold back. Often people want to help but they don’t know how.

You are a caregiver and caregivers are heroes, but people need to be reminded that even super heroes need help from time to time.

Bobbi Carducci, The Imperfect Caregiver

 

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.

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

 

 

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: Does anyone else think the person they are caring for is faking to get attention?

It can seem like that, especially in the early and moderate stages. This is when behavior can be off the wall one moment and seemingly normal the next.

  1. A family member or friend drops by and suddenly the person in your care changes. Someone who can rarely speak engages in conversation again.
  2. There is light in his eyes that’s not been there in a long time.
  3. He may not remember your name but recognizes the rare visitor immediately.
  4. As you approach his doctor’s office he stands straighter and walks with his head up.
  5. He convincingly denies symptoms and behavior you encounter daily.

You watch, amazed, and perhaps convinced, you are being taken advantage of. What you are seeing and hearing is the person in your care using every resource he can draw upon in order to appear normal. He is aware that something is very wrong and wants to convince others that he is still himself. It can’t last. It’s exhausting and the strain will take everything out of him for the rest of the day and possibly for the next several days.  You will both be in for a difficult time for a while.

As frustrating as it may be for you, try to understand that what you are experiencing with him are some of his last efforts to be retain his dignity and be seen as he once was.

Be prepared for some visitors to insist he’s not as bad as you led them to believe. Understand that the medical staff will listen to him first and may question your perceptions of his progression. On some occasions, you may question your own sanity.  Know this, it’s not you. You have the facts, they don’t.

You may want to have a brief video of what really goes on stored on your smart phone to share with those who need to know the truth. It could lead to getting more help for both of you.

For those you rarely see or will always question what you do, let them believe what they will and vent as needed to other caregivers who understand what it’s really like.

To learn more about Bobbi Carducci, the Imperfect Caregiver, click on her name. To contact her  directly send an email to bcarducci@Comcast.net . Comments and questions are always welcome.

 


 

 

 

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?

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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

 

 

Mom Has Alzheimer’s

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“Mom has Alzheimer’s.” Those incredibly sad words are repeated daily to friends, coworkers, friends, people at church, , even those we meet for the first time. Everyone saying them is lost and alone trying to cope with the devastating effects that Alzheimer’s and the other forms of dementia have on the patient the rest of their family.

For seven years I was a caregiver for my father-in-law, Rodger who had dementia, Parkinson’s disease, severe swallowing problems, congestive heart failure and a myriad of other ailments. Caring for him was the hardest thing I ever did. Often I felt alone and wished for someone to talk to, someone who understood what I was going through. Someone who would listen without judging me when the need to vent the frustration or anger that popped up on the most difficult days. That is the person I try to be now. I hope the things I learned making it up as I went along and what I have learned since becoming a caregiver advocate help you and let you know you are not alone.

Create a care team.

You can’t do it alone. Enlist friends and family members to help. Even if siblings live far away they can pay bills or prepare the tax forms for you. Even calling you once a month can help.

Determine who will have Power of Attorney to make medical and financial decisions for the person with dementia. Get the paperwork done as soon as possible. Siblings often disagree when it comes time to make end of life decisions.  One person must be able to speak for the one who no longer speak for herself.

Find a caregiver support group. You need to spend time with people who understand what you are going through and who can offer practical tips on dealing with issues that arise daily. www.Alz.org  has listings by state and local community.

When someone says, “Let me know if you need anything.” Give them something to do.

Cook dinner for us once a month.

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

Get my car inspected.

Cut the grass or shovel snow.

Visit with Mom now and then. She enjoys the company and I can use the time to take a shower.

Spend time with me and allow me to vent without judging me. This is the hardest thing I’ve ever done.

Respite care will become critical as time passes. Being on call 24 hours a day, seven days a week for several years is impossible for anyone to maintain. Believe me, I know.  A sleep deprived caregiver is not an effective caregiver. Plus, your own health will begin to suffer.

People will tell you to take care of yourself first. Unfortunately, they can’t explain how to do that when every minute of your time is dedicated to someone else.

Even well-meaning family members and friends can’t be there every time you need them. Fortunately, in addition to the caregiver support groups mentioned above there many other agencies dedicated to supporting caregivers. Here are a few available locally.

Respite Care:

Right At Home: www.rightathome.net

Blue Ridge Hospice: www.bridgehospice.org

Veterans Hospitals:  If the person you are caring for is a veteran, he or she may be eligible for respite care at a VA hospital near you. Veterans may also be entitled to in home respite care allowing the family caregiver time to rest and recoup ones strength.

Caregiver blogs: An addition to my blog, The Imperfect Caregiver, www.theimperfectcareigver.com some of my favorites are: The Caregivers Living Room http://www.donnathomson.com/; A Place for Mom http://www.aplaceformom.com/blog/; The Caregiver Space http://thecaregiverspace.org/blog/

Caregiver apps can be found here: http://www.aplaceformom.com/blog/best-and-worst-apps-for-caregivers-07-03-2013/

Bobbi Carducci is a caregiver advocate, blogger, support group leader, international speaker on caregiving issues, and author of two books for caregivers, Caregiver You Are Not Alone and Confessions of an Imperfect Caregiver. She is a Certified Caregiving Consultant and a Certified Caregiving Educator. contact Bobbi at bcarducci@comcast.net www.bobbicarducci.com www.theimperfectcaregiver.com

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

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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

 

 

 

 

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