Posts Tagged ‘denial’

3 Things Alzheimer’s Caregivers Should Never Do

Tuesday, January 20th, 2015

Don’t Be in Denial

When a loved one shows signs of dementia it’s painful to acknowledge it. It’s common for their friends and loved ones to be in denial. It’s easy to ignore the symptoms, make excuses for the person, or push the symptoms to the back of your mind.

The problem with denial is it doesn’t lead you to take your loved one to a primary care physician or neurologist for a complete workup. And the problem with that is that sometimes dementia is caused by health issues other than Alzheimer’s. Some of those problems can be treated or even reversed.

Don’t Ask “Do You Remember?”

Asking a person with Alzheimer’s if they remember something is a common mistake that’s easy to make. It’s almost as though we think we can jog their memory. But we rarely do. They have probably forgotten the event in question. That’s what people with Alzheimer’s do. They forget. So it’s better to say, “I remember when . . . ” and then tell them a story.

Don’t Argue With or Contradict the Person         

You can never win an argument with people who have dementia. They will stick to their guns to the bitter end! It’s much better to agree with them and then change the subject. This can prevent a nasty argument that would spoil your time with your loved one.

Overcoming Denial When a Loved One Shows Signs of Alzheimer’s

Friday, October 31st, 2014

Alzheimer’s is, above all, an insidious disease. Its symptoms often begin so mildly and progress so slowly that it’s easy for friends and loved ones to deny them until one day there’s a ‘defining incident;’ an incident so bizarre that not even the spouse, child or other loved one can ignore it or explain it away.

Yet the disease typically starts with things of little or no significance. Not being able to come up with a common word. Mixing up someone’s name. Forgetting to turn off the stove. Things we all do from time to time. But for the person just entering the fringes of Alzheimer’s these things may begin to happen more and more often.

Years may pass between the earliest occasional confusion and the ‘defining incident.’ And during those years, the person may annoy or even anger friends and family members by being late, forgetting important appointments, being short-tempered, being unable to perform routine tasks, and exhibiting a whole variety of other troublesome behaviors.

But people noticing consistent signs of confusion and forgetfulness in a loved one should not wait for the ‘defining incident.’ One early action to take is to review the Alzheimer’s Association 10 Signs of Dementia and ask yourself whether your loved one is showing one or more of them:

  1. Memory loss that disrupts daily life
  2. Challenges in planning or solving problems
  3. Difficulty completing familiar tasks at home, at work and at leisure
  4. Confusion with time or place
  5. Difficulty understanding visual images and spatial relationships
  6. New problems with words in speaking or writing
  7. Losing things and the inability to retrace steps
  8. Decreased or poor judgment
  9. Withdrawal from work or social activities
  10. Changes in mood and personality

The Alzheimer’s Association web site has additional information about each of these items and explains how they differ from things ‘normal people’ do from time to time.

It’s easy to ignore these signs or fail to connect the dots, but when a loved one is showing them it’s essential to dig down deep into your soul and find the emotional strength to get a medical evaluation. No one wants to be evaluated, or have a loved one evaluated, for Alzheimer’s disease, but sometimes it has to be done – and the sooner the better.

 

When a Loved One Has Alzheimer’s – Realization vs. Acceptance

Sunday, May 18th, 2014

Realization and acceptance are two different things. It’s one thing to finally realize someone close to you has Alzheimer’s. It’s a completely different thing to accept that fact.

After months or even years of being in denial, most people finally realize Alzheimer’s has struck. But many people never really come to accept the situation. Some never become at peace with the diagnosis and all that it means. They know it in their brains, but as hard as they try they can’t accept it in their hearts.  The bold truth is so painful we can push it to the back of our minds.

To come to terms with Alzheimer’s we must first let go of the previous person and embrace the new person – just as they are. And since that person will continue changing as time goes by, we must constantly let go of the old and accept the new.

We must fall in love again with the person as he or she is in the present and let go of the person we used to love. That person is never coming back in the same way they used to be.

We must learn to let go and learn to love again.

Overcoming Denial When a Loved One Shows Signs of Alzheimer’s

Monday, May 12th, 2014

Alzheimer’s is, above all, an insidious disease. Its symptoms often begin so mildly and progress so slowly that it’s easy for friends and loved ones to deny them until one day there’s a ‘defining incident;’ an incident so bizarre that not even the spouse, child or other loved one can ignore it or explain it away.

Yet the disease typically starts with things of little or no significance. Not being able to come up with a common word. Mixing up someone’s name. Forgetting to turn off the stove. Things we all do from time to time. But for the person just entering the fringes of Alzheimer’s these things may begin to happen more and more often.

Years may pass between the earliest occasional confusion and the ‘defining incident.’ And during those years, the person may annoy or even anger friends and family members by being late, forgetting important appointments, being short-tempered, being unable to perform routine tasks, and exhibiting a whole variety of other troublesome behaviors.

But people noticing consistent signs of confusion and forgetfulness in a loved one should not wait for the ‘defining incident.’ One early action to take is to review the Alzheimer’s Association 10 Signs of Dementia and ask yourself whether your loved one is showing one or more of them:

  1. Memory loss that disrupts daily life
  2. Challenges in planning or solving problems
  3. Difficulty completing familiar tasks at home, at work and at leisure
  4. Confusion with time or place
  5. Difficulty understanding visual images and spatial relationships
  6. New problems with words in speaking or writing
  7. Losing things and the inability to retrace steps
  8. Decreased or poor judgment
  9. Withdrawal from work or social activities
  10. Changes in mood and personality

The Alzheimer’s Association web site has additional information about each of these items and explains how they differ from things ‘normal people’ do from time to time.

It’s easy to ignore these signs or fail to connect the dots, but when a loved one is showing them it’s essential to dig down deep into your soul and find the emotional strength to get a medical evaluation. No one wants to be evaluated, or have a loved one evaluated, for Alzheimer’s disease, but sometimes it has to be done – and the sooner the better.

 

How I Accidentally Wrote a Book for Alzheimer’s Caregivers

Monday, July 22nd, 2013

I wrote Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy as a love story. It’s about the powerful 30-year relationship I had with Edward Theodoru, a delightfully colorful, wickedly eccentric Romanian gentleman and scholar.

My only purpose was to chronicle the relationship and share it with the public. The book narrates the story of our early romantic years together, including Ed’s quintessential old-school European manners, our subsequent decades-long relationship as soul mates, and our eventual triumph over his Alzheimer’s.

Come Back Early Today does not give advice to caregivers. But it does illustrate how Ed’s disease progressed and how I dealt with the numerous issues that typically arise when caring for someone with Alzheimer’s.

So you can imagine my surprise when most of the book’s reviewers focused heavily on the parts that describe how I cared for Ed when he had dementia. It shows how I managed everything from denial, getting a diagnosis, convincing him to go to a long-term care facility, arranging for a DNR (do not resuscitate) order, to end-of-life issues care issues and hospice considerations.

One day I unexpectedly received a letter from a Cape Coral woman whose husband has Alzheimer’s. She wrote:   “The main reason I am writing is to tell you how much I liked your book. Since my husband was diagnosed [with Alzheimer’s] I have read many books, attended some courses and joined a support group. Your book is the only one that gave me hope.”

That’s when I realized I had accidentally written a resource for Alzheimer’s caregivers that also includes a love story rather than a love story that just happens to illustrate solutions to several dementia caregiving issues.

I’m still intrigued (and gratified) by the unexpected responses to my memoir.

 

Caregiving Pearls

Saturday, June 8th, 2013

1.    Don’t Be in Denial: It’s only natural to be in denial when a loved one begins to show signs of dementia, but that only prevents the person from getting a diagnosis, starting treatment, and planning for the future.

 2.    Don’t Ask, “Do You Remember?” Of course they can’t remember. If they could remember they wouldn’t be diagnosed with dementia. Asking if they remember some person or event could make them frustrated.

 3.    Do Interact With the Person at His or Her Level:  You may want to interact with the person the way you always have, but that isn’t going to be possible. Instead, figure out at what age they appear to be behaving, then connect with them at that level.

 4.    To Connect With People Who Have Alzheimer’s, Put Something Meaningful in Their Hand: This is a valuable tip provided by Tom and Karen Brenner in their book, You Say Goodbye and We Say Hello: The Montessori Method for Positive Dementia Care. You may have to experiment some to find out what is meaningful to any specific person.

 5.    To Connect With People With Late-Stage Alzheimer’s Try Introducing Them to Children, Pets, Music or Art:  These four activities will often reach people in the late stages of the illness – even if they hardly talk anymore. 

6.    Don’t Argue, Correct or Disagree: You can’t win an argument with a person who has dementia – so don’t even try. Neither should you contradict them. It will make them dig in their heels even more strongly.

 7.    Don’t Bring up Topics That May Upset the Person: If you know your loved one will get upset if you talk about politics, for example, don’t start the conversation in the first place. It will probably lead to a battle you don’t want to have.

 8.    Do Quickly Change the Subject If the Person Does Get Upset: If the person does get upset one of the best things you can do is redirect their attention to something else, preferable something pleasant.

 9.    Don’t Quit Visiting When the Person Doesn’t Know Who You Are:  Just because your loved one does not recognize you doesn’t mean they have no feelings. People with Alzheimer’s may enjoy being visited even if they don’t know precisely who the visitor is.

 10.  Do Take Care of Yourself:  Being an Alzheimer’s caregiver is hard work. The gold standard book on Alzheimer’s caregiving isn’t entitled The 36-Hour Day for nothing. Take good care of yourself for your benefit and for the good of the person for whom you’re caring. You can’t be an effective, compassionate caregiver if you’re exhausted and burned out all the time.

 

5 Things Alzheimer’s Caregivers Should Never Do

Sunday, May 5th, 2013

Don’t Be in Denial: When a loved one shows signs of dementia it’s common for their friends and loved ones to be in denial. It’s easy to ignore the symptoms, make excuses for the person, and push the symptoms to the back of your mind. The problem with denial is it doesn’t lead you to take your loved one to a primary care physician or neurologist for a complete workup. Sometimes dementia is caused by health issues other than Alzheimer’s. Some of those problems can be treated or even reversed.

Don’t Ask “Do You Remember?” Asking a person with Alzheimer’s if they remember something is a common mistake. They have probably forgotten the event in question. That’s what people with Alzheimer’s do. They forget. So it’s better to say, “I remember when . . . ” and then tell them a story.

Don’t Argue With or Contradict the Person: If you’re caring for someone with dementia it’s so easy to contradict or argue with them when they say things that are total nonsense. And they typically say a lot of things that fall into this category. But it’s much better to agree with them and then change the subject. This can prevent a nasty argument.

Don’t Delay Nursing Home Placement When It’s Clearly Needed: At some point it may (but not always) become evident that you can no longer care for the person at home. Mid- to late-stage patients need nursing staff and aides 24 hours a day and a physician on call at all times. They also need a dietician, a cook, a housekeeper, an activity director and many more professionals. And they need to have people around them to provide social stimulation. Sometimes placing the person in a reputable institution is indeed the most loving choice for the patient.

Don’t Stop Visiting When Your Loved One No Longer Recognizes You: Many people think that there’s no reason to visit a loved one who no longer recognizes them, but I am firmly convinced that you should visit anyway. First of all the person may enjoy being visited even if he or she doesn’t quite know who is visiting them. More importantly, it’s possible that the person does recognize you but simply isn’t able to say so.

Do any of you have suggestions of other things an Alzheimer’s caregiver should never do?

When Your Loved One Is Ready for Hospice Care – And You Aren’t

Monday, February 4th, 2013

I want to share the experiences I had near the end of my beloved Romanian soul mate’s life. First of all, I was in denial. Even though Ed’s medical team at his long-term care facility told me it was likely that he would pass away within six months, I continued behaving as though he would live another year or two, or even more.

I did eventually overcome my denial and decided to call in a hospice organization. But the very word “hospice” scared me. I felt as if ordering hospice care for Ed would be tantamount to signing his death warrant. I knew that was ridiculous, but that’s how I felt.

I delayed the call for weeks, telling myself he didn’t need it quite yet. The truth was that I wasn’t able to deal with it quite yet. Seeing how weak and frail Ed was, I finally felt compelled to take action.

I consulted Dr. Doug Smucker, a colleague who was a family physician at the University of Cincinnati and who was specialized in end-of-life care. I had a lot of questions about hospice care, including whether I could stop it if I changed my mind later. (He told me I could stop it at any time, for any reason, and that if I changed my mind again I could resume the services.)

After answering all my questions, Doug looked at me kindly and said, “You know, Marie, the real question for the caregiver is how to help the patient have the highest possible quality of life in the time that is remaining.”

That completely changed my thinking about the situation. It gave me a new and positive goal – to bring Ed as much happiness as possible. It led me to think about all the special things I could do for Ed — visiting him more often, taking my little Shih Tzu to see him, having that violinist come back and play another concert, reading to him from The New York Times, and buying him even more of the stuffed animals he loved so much.

After that talk I spent many hours pleasantly thinking up special things to do for and with Ed. Once I got my mind off his looming death we were able to have a beautiful, pleasurable months-long conclusion of our life together.

Overcoming Denial When a Loved One Shows Signs of Alzheimer’s

Wednesday, December 12th, 2012

Alzheimer’s is, above all, an insidious disease. Its symptoms often begin so mildly and progress so slowly that it’s easy for friends and loved ones to deny them until one day there’s a ‘defining incident;’ an incident so bizarre that not even the spouse, child or other loved one can ignore it or explain it away.

Yet the disease typically starts with things of little or no significance. Not being able to come up with a common word. Mixing up someone’s name. Forgetting to turn off the stove. Things we all do from time to time. But for the person just entering the fringes of Alzheimer’s these things may begin to happen more and more often.

Years may pass between the earliest occasional confusion and the ‘defining incident.’ And during those years, the person may annoy or even anger friends and family members by being late, forgetting important appointments, being short-tempered, being unable to perform routine tasks, and exhibiting a whole variety of other troublesome behaviors.

But people noticing consistent signs of confusion and forgetfulness in a loved one should not wait for the ‘defining incident.’ One early action to take is to review the Alzheimer’s Association 10 Signs of Dementia and ask yourself whether your loved one is showing one or more of them:

  1. Memory loss that disrupts daily life
  2. Challenges in planning or solving problems
  3. Difficulty completing familiar tasks at home, at work and at leisure
  4. Confusion with time or place
  5. Difficulty understanding visual images and spatial relationships
  6. New problems with words in speaking or writing
  7. Losing things and the inability to retrace steps
  8. Decreased or poor judgment
  9. Withdrawal from work or social activities
  10. Changes in mood and personality

The Alzheimer’s Association web site has additional information about each of these items and explains how they differ from things ‘normal people’ do from time to time.

It’s easy to ignore these signs or fail to connect the dots, but when a loved one is showing them it’s essential to dig down deep into your soul and find the emotional strength to get a medical evaluation. No one wants to be evaluated, or have a loved one evaluated, for Alzheimer’s disease, but sometimes it has to be done – and the sooner the better.

Would you like to share your own experiences with denial? How long were you in denial about your loved one’s condition? What happened that finally made you face the truth?

Preparing for Your Loved One’s Death: A Critical Piece of Advice

Saturday, August 11th, 2012

There are many emotional issues facing family members and friends when a loved one is terminally ill. These include things such as communicating the terminal diagnosis to others; overcoming denial that the person is in fact terminally ill; feeling the need to “be strong” for that person’s benefit; dealing with anticipatory grief; and deciding when or if to engage hospice care services – just to name a few.

I want to share my experience near the end of Ed’s life. After I started hospice care for him I consulted Doug Smucker, MD, a family physician at the University of Cincinnati who specialized in end-of-life care.

After answering all my questions, he told me something that completely changed my thinking and feelings about the situation. He said that rather than focus on Ed’s impending death, I should focus on doing everything I could to help him have the highest possible quality of life in the time that was remaining.

That turned me around and led me to focus on all the special things I could do for Ed – visiting him more often, taking my little Shih Tzu to see him, having the violinist come back and play another concert for him, and buying him even more of the stuffed animals he loved so much. This helped both me and Ed have a beautiful, pleasant months-long conclusion of our life together.