Archive for March 2013

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Convincing a Loved One to Move to a Long-Term Care Facility

Saturday, March 30th, 2013

Most elderly people who have a clear and compelling need to be in a long-term care facility desperately want to remain in their own homes.

The decision to place a loved one can be agonizing, but caregivers need to consider the following:

  1. 1.      Long-term care placement can be the most loving choice when absolutely needed to ensure the person receives all the necessary care, is around others for social stimulation, and is in a safe environment.

 

  1. 2.      Caring for a loved one is probably seriously affecting their own physical and mental health and wellbeing.  No one can be a good caregiver if they are exhausted and burned out all the time.

Many people flat out refuse to go. In such cases you can try to convince them that it’s best for their own health and wellbeing. If that doesn’t work you may enlist the help of another family member or even the person’s physician to talk with them. People will sometimes pay more attention to the advice of someone other than the primary caregiver.  However, if the person is mentally competent and continues refusing, there may be very little you can do about it unless their health is in imminent danger.

If your loved one has dementia and is resisting placement it can be more complicated, but there are several strategies you can use. First of all try those listed above for loved ones who don’t have dementia.  You may also obtain the services of a geriatric care manager, who can often guide you through the process.

Another approach is to use what is referred to as “compassionate deception.”  You can convince the person to go for a limited period of time, such as a week. Then you stretch it out to two weeks, then three, and eventually they will probably adjust to being there full time. If a loved one is significantly impaired he or she may even forget they were supposed to go back home. Or they may not be aware they aren’t at home.

You may also make arrangements for a facility to allow you to take the person there, saying you’re going to visit someone there or you have dinner reservations there (or some other reason for visiting). Then when you leave don’t take them with you. You will probably feel terribly guilty, but the person will almost certainly adjust. This may take a few days or, in rare cases, a few weeks, but your loved one will probably come to know the facility as ‘home,’ and they are not likely to remain angry with you.

If none of the above suggestions work and you have power of attorney, you may have to enlist the help of law enforcement. According to Hammond, “You should do this only as a last resort. It’s only for the most severely impaired people and the most dire circumstances – such as if the person becomes a danger to him or herself or others.”  Law enforcement typically takes the person to a hospital geriatric psychiatry unit for evaluation and treatment, from where they may be released to a nursing home.

Do any of you have any other suggestions for solving this problem?

Alzheimer’s and Unconditional Love

Sunday, March 24th, 2013

Ed, my beloved Romanian soul mate of thirty years, was continuing to decline slowly and was becoming ever more difficult to get along with. Our arguments seemed unending. I was at the end of my rope. I really was.

Irene, a friend of mine told me, “You have the option of ending the relationship. You know that, right?”

That made me snap to attention.

“Irene, I can’t do that,” I said, as though it was the stupidest thing I’d ever heard. “I love him. Besides, he couldn’t survive without me. How could I ever abandon him?”

“I know women who were married for as long as fifty years who, in similar situations, divorced their husbands.”

“How could I possibly do that?  It would be morally reprehensible.”

For an instant I fantasized about how wonderful it would be not to have to endure his angry outbursts. But then I imagined Ed sitting in his recliner, unaware of my quandary and the repercussions it could have for him, watching Reagan’s funeral, as if it were the only thing that mattered in the world. 

Then I immediately dismissed the thought of leaving him. I would never leave him. Never.

“Well,” Irene said, “in that case, perhaps we need to talk about how to manage the situation. There are three things I can advise you,” she said. “First, don’t bring up topics you think may upset him. Second, if he starts to get agitated, change the subject. And third, agree with everything he says, no matter how absurd.”

And that’s how it came to be that as Ed’s dementia progressed I agreed with him about more and more. Important things, unimportant things; political issues and mundane day-to-day issues; silly things and serious things.

Although this whole plan seemed ludicrous at first, I found that it did stop most of our nasty fights. Irene’s advice worked. Staying with Ed, caring for him and loving him became much easier and sometimes even joyful.

Preparing Emotionally for the End

Wednesday, March 20th, 2013

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

 

Blog for Huffington Post Front Page: Who Says People With Alzheimer’s Can’t Remember?

Sunday, March 17th, 2013

I have been asked by the Huffington Post to submit a blog post for their front page next weekend. The theme is “Memory.” Here’s what I’m submitting:

Who Says People With Alzheimer’s Can’t Remember?

Many of us think that people with Alzheimer’s have few memories. This simply is not true. Though they typically don’t remember very much, they can nonetheless recall certain events and enjoy memories of pleasant happenings from their distant past.

Sometimes Alzheimer’s patients who can’t even recall whether they had lunch or not – let alone what they had – can remember the melodies of songs from their youth and young adult years. Anyone who has observed a sing-along in a nursing home has seen this.

They can also often recall all the words to these songs and sing along just as people without Alzheimer’s do. This is striking because many times these are people who haven’t even talked for months or years.

People with dementia can remember not just music from long ago – they can also recollect other happenings from the distant past.

I’d like to give an example from Ed, my Romanian soul mate of 30 years, who had Alzheimer’s, as recounted in my memoir about our relationship. Ed was living in a long-term care facility for people with Alzheimer’s when the following story took place.

One day I showed Ed a thirty-year-old photo of us together. He recognized me in person then, but didn’t realize I was the woman in the photo. Nonetheless, he looked in my eyes with a serious expression and remarked, “Ah . . . she loved me.” He remembered the affect he’d felt when the photo was taken even if he didn’t recognize I was the one who had loved him.

Another example from Ed occurred when I told him I was applying for a new job. The first time I told him, he responded, “That lady on the television is the Pope.” He didn’t understand a word of what I was telling him. .

So you can imagine my shock at his response a few weeks later when I told him about it again. That time he said in a strong, clear voice. “You’ll get the job! With all of your talent, experience and success writing grants at the University of Cincinnati, I’m sure they’ll hire you.” That day he remembered vividly how successful I’d been during my25-year career.

It is sometimes thought that even if people with Alzheimer’s can remember things from long ago, they may not understand or recall recent past events. Let me recount still another example from Ed that contradicts this belief.

When my mother passed away, I told Ed about it. He became visibly upset and said, “My mother didn’t die. I just talked to her last night.” (Since he was 88, this obviously couldn’t have been true.)

I told him, “No. Not your mother. My mother died. He looked baffled. I could have told him I’d fallen down the steps or gone to the dentist that day– it all would have been the same to him.

I didn’t bring up the topic again. Then one day two weeks later I was wearing a black shirt (as I’d decided to do to mark my mother’s passing) as I sat beside him at lunch. He suddenly looked me right in the eyes and said, “You look so beautiful in that black shirt even though I know you’re wearing it for death.”

I was stunned. And I realized it’s true. Sometimes people with Alzheimer’s exhibit memory abilities we’d never expect from them.

Do any of you have examples to share?

For more about Ed and memory you can read my book about our relationship and visit my website, which has a wealth of information about Alzheimer’s caregiving.

Are You Afraid You’re Getting Alzheimer’s?

Wednesday, March 13th, 2013

It wouldn’t be unusual for anyone to fear they are getting Alzheimer’s. When you have ‘a senior moment’ you may laugh about it, but you may also be one of numerous people who are secretly afraid it may be an early sign of dementia.

Two groups of people are especially vulnerable to this fear – those who have a loved one with dementia and those who work with dementia patients. If you belong to one or both of these groups you witness signs of dementia daily and as a result, become highly attuned to them. You may begin to interpret some of your own memory issues, no matter how minor or infrequent, as early warnings that you, too, are becoming a victim.

Most of us have had moments of concern after being unable to remember someone’s name, forgetting why we went into a room, or not being able to find our car keys. How are we to know whether these are normal sign of aging or whether they may be something more ominous?

The Alzheimer’s Association has addressed this issue in a 17-page PDF, Basics of Alzheimer’s Disease – What It Is and What to Do. This document includes a section on the 10 warning signs. The important feature of this PDF is that after a brief description of each there is a statement of “What’s a typical age-related change?”  After studying this document, one might conclude that generally speaking it isn’t what signs of dementia we have that matter. Rather, it’s their frequency, severity and the extent to which they interfere with our daily activities that counts.

The Alzheimer’s Association states: “Having trouble with memory doesn’t mean you have Alzheimer’s.  Many health issues can cause problems with memory and thinking. When dementia-like symptoms are caused by treatable conditions – such as depression, drug interactions, thyroid problems, excess use of alcohol or certain vitamin deficiencies – they may be reversed.”

So if you have serious concerns about your mental state you should see a primary care physician or a neurologist as soon as possible. It’s the only way to find out if it’s just normal aging, some other health problem, or if it’s in fact Alzheimer’s.

 

 

Awards Come Back Early Today Has Won

Sunday, March 10th, 2013

Come Back Early Today has won several awards. It was a finalist in the Readers Favorite Awards, the Santa Fe Writers Project Literary Awards and the Eric Hoffer First Horizon Awards (for new authors). In addition, two stories from the book were given honorable mention in the 2012 Writers-Editors Network International Competition. The first story was “The Little Yellow One,” about me giving Ed the little chick and so many other stuffed animals. The second story was “Please Wear a Tux,” about the violinist I had come play a special concert in his room at the nursing home.

Using iPods to Improve the Well Being of People With Alzheimer’s

Tuesday, March 5th, 2013

Research on the brains of people with dementia has shown that, even when they are no longer able to communicate verbally or recognize loved ones, they may still respond to their favorite music, often dramatically, and sometimes remembering all the lyrics to the songs played.

One approach to reconnecting persons with Alzheimer’s with beloved musical memories is to provide them with individualized music they can listen to whenever they want. It’s critical to provide them with the music they loved most before developing Alzheimer’s. This can be done by putting their favorite music on iPods for them.

To get started bring an iPod from home and try it out. Try to assemble between 80 and 100 songs (10-15 artists) initially. It has been shown that those with Alzheimer’s disease will become more alert, engaged and talkative if familiar music is played regularly month after month.

Amazingly, some long-term care facilities have even found that antipsychotic medications can be reduced by 50% when iPods are used throughout the facility.

Furthermore, since the use of iPods decreases agitation – one of the primary reasons people with Alzheimer’s are moved to nursing homes in the first place – many patients can remain in their homes longer.

 

Sometimes Forgetting Is a Blessing

Saturday, March 2nd, 2013

The following story illustrates the fact that sometimes when Alzheimer’s patients forget things it is a blessing for them.

Things had been calm for a while, but Ed’s quarterly care conference brought bad news. They said his physical health was deteriorating and he would have to be moved to a different room in another wing of the facility. A week later they moved him.

“I want to go home,” Ed kept repeating plaintively to me and everyone who passed by during my visit the day of his move.

I felt as though I’d ripped him away from everything that had become familiar to him. From what he’d come to accept as his “home.” I couldn’t begin to imagine how confused and lost he must be feeling, and there was nothing I could do to make it better.

Seeing my tearful state, Janelle, one of Ed’s new aides, looked at me with compassion, squeezed my hand and said, “He’ll be okay. You’ll see.”  

The instant I woke up the next morning I heard Ed’s melancholy voice in my head, repeating over and over, “I want to go home.” I burst into tears.

A little later, I drove to the Center and ran into Janelle outside Ed’s new room.

“How’s he doing today?” I asked, expecting the worst.

“Oh, he’s fine,” she said with a little laugh. “He stopped asking to go home.”

“He what?” I asked, stupefied.

“Yeah. He’s already forgotten he was moved and he’s settled into his new room as though nothing’s changed. He’s in a real good mood this morning,” she said, eyes twinkling. “Go in and see for yourself!”

I stopped and let her statements sink in.

“Yes. It’s often like that,” she said. “Residents often adjust to changes more easily than their loved ones.”

“I guess that may be one of the benefits of dementia,” I said. “You quickly forget painful things that happen to you.”

Nonetheless, even though Ed had forgotten about the move, the sound of his voice begging to go home reverberated in my head and troubled me for days. I was the one still in distress. I had learned that with Alzheimer’s, sometimes the caregiver suffers more than the patient.