Caregiver You Are Not Alone: Beth’s Story

Be Careful What You Pray For

Being a caregiver is more difficult than one can imagine until it becomes the focus of your life. For many, it entails a commit of years and no matter how hard you try you are unable to alter the outcome.

During my years as a caregiver for my father-in-law, Rodger. I cried a lot. Sometimes I got angry, often I was weighed down with guilt. Many times I turned to prayer. Did I receive instant answers or did a miracle occur? No. But there were occasions when help appeared when I needed it most. What it took me along time to discover is that it’s very important to be specific in what you pray for. Many people pray for strength when what they really need is assistance. Others may pray for patience when they really need an answer now.

Beth doesn’t realize she is already as string as she will ever need to be and asking for added strength will only add to her burden.

When Family Doesn’t Help : Charlie’s Story

When someone steps up to be a caregiver, family members may say they will help when needed. Perhaps they are sincere in the moment but all too often the actual care is left to one person. Daily life takes over for those not actively involved and it is assumed the caregiver has everything under control.

That is probably true in the beginning, but as dementia advances and care becomes critical all day and night for months or years the caregiver becomes overwhelmed. Unfortunately this is also the time when too many family members refuse requests for help.

With so many living extraordinarily busy lives it is easy to to keep putting off assisting the caregiver with the promise do it next time. Sadly, next time never comes. Isolation, sleep depravation, and the inability to care for one’s own health take a toll on the caregiver leading to resentment, depression, and in some cases, the death of the caregiver.

Helping need not be difficult or time consuming. Small things can make a big difference:

  • Sit with the person needing care so the caregiver has a few minutes to shower without worry.
  • Provide a meal for the caregiver once a week.
  • Pick up groceries or prescriptions.
  • Take over lawn care.
  • Visit with your family member. Call when visits are not possible.
  • Let the caregiver know you appreciate all they do.
  • Listen to their cry for help. It could save a life.

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 Caregiver Asks: My husband left the house in the middle of the night. Other than locks or alarms how can I prevent him from doing this again?

For some, locks seem to present a challenge to the one in care and he or she becomes very ingenious in getting around them. Alarms can frighten and confuse those with dementia making them combative and suspicious increasing the stress for all involved.
Here are a few suggestions that have helped others in your situation:
1. Door decals are available that create the illusion of a bookcase in place of the door. https://bit.ly/2WJykCv

2. Painting the door to match the surrounding walls may work in place of a decal
3. Place dark colored rug in front of the door.  It can appear to be a hole in the floor that your husband will not want to cross.

 If this is happening during the day as well, perhaps going for a short walk or drive with him will get him out of the house long enough to feel better.
1.  Sitting all day, every day gets boring. If the one in your care can walk a bit, perhaps a short walk around the house at the end of the day will help.

2.  Ask him where he is going. His answer will provide some insight as to where his mind has taken him. If possible, enter his world and ask him about that time or place. You may hear some very special memories.
If none of these suggestions work you may have to use a lock or alarm. It doesn’t mean you would be doing anything wrong. It means the disease has progressed to a new level.

1. Locks can be placed high on the door and painted to match the color around them making them hard to see and more difficult to get around.
2. Notify local law enforcement and first responders that a person in your home has dementia and you may need assistance if he or she should wander away. Be sure to remind the dispatcher when you call for help.
There is never one solution that works for everyone with dementia. Feel free to share your suggestions here. Caregivers sharing information makes us all a bit wiser.

Bobbi Carducci, CCC, CCE

A Caregiver Asks: Do they choose not to listen when you tell them something? Or, do they not comprehend?

The short answer is yes to both of these situations.  Dementia, in its many forms, is a devastating brain disease. This makes it very hard for any of us to know and/or understand how someone will respond in the moment. Depending on what part of the brain is affected and what connections are working or not working at the time, reactions vary leaving caregivers questioning what is happening and why.

Do they choose not to listen when you tell them something?

Perhaps and here are a few reasons why:

  1. She is not feeling well and wants to be left alone.
  2. He doesn’t recognize you and sees no reason to respond to you.
  3. You keep saying the same thing to her and her answer is the same. She wants you to be quiet and go away.
  4. It gives him a feeling of control. Not answering is a response.

Or, do they not comprehend?

This is very often true. The brain controls all of our functions.

  1. Hearing, vision, balance, reasoning, emotions, any or all can change at any time. Their behavior can be affected for moments or altered forever
  2. When they can’t hear you, they won’t respond.
  3. When they can’t see well or their balance is off, they often resist getting up and walking.
  4. When the ability to understand cause and effect is gone, they will continue to do and say things that you repeatedly ask then not to do or say.

How do you cope with all that?

You do the best you can in the moment. When it gets too hard and you are frustrated and angry, go to another room and take some deep breaths. Cry; scream, pray, do what helps you.

Connect with other caregivers either in person in a caregiver support group or online. Learn as much about dementia behaviors as you can. They are not acting out on purpose and your reactions are normal.

What you need is support and understanding. You will always find it here.

Bobbi Carducci

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A Caregiver Asks: My Wife Keeps Asking for Her Deceased Mother. What Can I do?

I Miss You

My wife keeps asking for her mother who has been gone for more than 20 years. What can I do to convince her that her mother is gone?

The sad fact is that you will not be able to reason with her about this, and it will be painful for both of you if you continue trying.

Here are some reasons why:

  1. Her short-term memory is affected and she will forget what you told her and ask again repeatedly.
  2. Learning anew of her mother’s death will cause her to grieve all over again.
  3. She may think you are lying to her and become suspicious of everything you tell her.
  4. She may try to leave her home to find her mother.

Here are a few are a few suggestions to try instead:

  1. Tell her that her mother loves her very much and would be with her if she could.
    1. Mom is visiting a distant relative and will be back in a few days.
    2. Mom is at work.
    3. Mom has gone to the store and will be back soon.
  2. Ask her to tell you about her mother.
    1. Did Mom make the best pies or cookies at holiday time?
    2. What are some of the things she loved to talk about with Mom?
    3. Doe she look like Mom or just the opposite.
      1. Share pictures of them taken when she was growing up.

It may help to take your wife into another room. Sometimes a change of scenery will help distract her. Play some music you know she likes or put on a favorite television program she always enjoyed. Some people with dementia love vintage reruns.

It is important (and difficult) for us to remember that we must enter their world and not expect them to understand ours.

Bobbi Carducci, CCC, CCE

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A Caregiver Asks: Why Does Dad Keep Insisting He Must Go to Work?

“Dad happily retired ten years ago. He loved having the free time to play golf, travel with Mom, and spend time with his grandchildren. Now every day, and often throughout the night, he tries to leave the house, insisting he’s going to be late for work. We is he doing this now?”

Men often define themselves as the family breadwinner, even if their wife had a job as well. Providing well for those they love is a source of pride and a way they show their love for those dear to them. And let’s not forget the sheer number of hours he put into his career.  The routine becomes ingrained. Habits become automatic. It is no wonder his subconscious reminds him of this on a regular basis.

It is also possible that dementia has taken him back in time and he thinks he is much younger than his years and having a job is a necessity. Trying to convince him otherwise will not work. It will make him angry and suspicious of your motives raising his stress level and yours.

The next time this happens, you may want to try one of the following suggestions. It is important to help him to see that you are not the one keeping him from his job.

  1. Tell him it is the weekend or a holiday and his place of business is closed.
  2. If there is something he enjoyed doing with his time off ask him to tell you about how much fun he had or what his proudest moment was.
  3. Talk to him about special moments you shared with him when he had time off from work.
  4. If he loved celebrating one holiday more than others, show him pictures that time.
  5. Give him a project to do.
      1. If he loved working with his hands, give him a box of various sizes of screws and washers and have him sort them.
      2. If he worked with numbers give him some old bank statements to go over.
      3. If working on cars was his passion, show him videos of vintage automobiles being restored. Ask him questions about the work and how it is done.

Engaging him in memories of things he loved may lead to some very special moments for both of you.

Bobbi Carducci, CCC, CCE

www.bobbicarducci.com

Book me for your caregiving event

 

 

 

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

 

 

 

 

 

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

 

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