The Imperfect Caregiver

Reality, what is it good for? The brain is a magical, mysterious, and incredibly powerful part of us that influences every aspect of our being. From birth we depend on accepting what the brain tells us is real. What we see, hear, taste, and touch, our understanding of the world around us. The brain is also an inventive story teller.

Consider your dreams and how real they seem to you. Scary, sensual, weird, inspirational, sad, happy, you name it. The dream is our reality. When we waken we realize it was it was merely an illusion. People with dementia can’t make that distinction.

What delusions does the person in your care insist is true that you know are false? How so you react to them?

The dementia brain sends images, thoughts, and sounds to people who are awake. Whatever story the brain is sharing with them becomes their reality. This is why we must enter their world. It is up to us to respond to what their brain is telling them. It is not telling lies. It is not being deceptive. It is recognizing someone’s very real confusion and fear and doing what we can to put them at ease.

As difficult as it is to cope with the unpredictable behavior of someone with dementia, please try to remember, They are giving us a hard time because they are having a hard time. They can’t help it.

A caregiver near you needs help. When people say, “Let me know if you need help,” when you are new to caregiving, some mean what they say. Others are simply being polite. We accept this and go on with our day.

For caregivers the need for help increases over time. Usually about the time friends and family drift away, busy with their on lives and responsibilities.

Once someone steps up to be the caregiver it’s easy for others to let them do it and assume they are fine. They are not fine. There is always something you can do to help. But. instead of asking the caregiver what that is I suggest you let them know what your going to do and then do it.

Here are a few suggestions: Picking up some groceries when you go to the store. Have teens cut the grass or shovel snow. Cook and deliver a meal once a month. Call for a friendly chat now and the and allow the caregiver to vent without judgment.

Every little bit helps and the caregiver near you will appreciate it. Insert your ideas in the form below. You may inspire someone to do it too.

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.

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

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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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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“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. 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

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