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

 

 

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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 – 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 

 

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.

 

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

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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

 

Caregivers Are Beautiful

beautiful woman

Caregivers are unique in every way. It is the caring we do that brings us together and links us in a way that cannot be broken. Know that the Imperfect Caregiver understands how special you are, even when you believe you are failing. Blessed be.

Dr. Phil, Help the Caregivers who need it most. http://www.drphil.com

Caring Takes Courage

Lion  Quiet Courage

Caring takes courage. The courage to open your home and heart to what is to come. The courage to advocate fiercely for those in your care. The courage to know the day may come when you will hear the words, “Who are you?” from your mother or father.

Sometimes it takes every ounce of your brave spirit to get up and face another day of doing this. Yet you do. You continue even when you feel a desperate need to run away from it all. There may be days when you do roar. When you rage against these terrible diseases. When you fight with your spouse over the unfairness of it all. Or in the dark moments when you lose your temper with the one in your care. Yes, it happens to you and it happens to others.

It happened to me. When it did I cowered in shame. When had I become weak and nothing but a coward afraid of what another day would bring. I cried. I prayed. I vented and I cried some more.

Finally, as the tears fell, washing away some of the stress, my strength grew and I heard that little voice again and I slept allowing me to regain the courage to try again tomorrow.

Don’t forget to help me gain the Attention of  Dr. Phil. Join me in encouraging him to accept the Dr. Phil Challenge to establish a grant through the Dr. Phil Foundation to provide respite and assistance to caregivers who need it most.  Go to the Dr. Phil website and leave a comment at http://www.drphil.com

 

 

 

 

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