Posts Tagged ‘communicating’

5 Problems Associated With Caring for a Mid- to Late-Stage Patient at Home

Friday, December 12th, 2014

Many people would rather die than place their loved one in an institution. But such placement may actually be the best solution for the person. Although your loved one may have previously stated their adamant opposition to going to a nursing home, many mid- to advanced-stage Alzheimer’s patients will soon forget they were even moved.

Please consider the problems stated below before making your decision:

  1. You’re not an expert at realizing when the person has a significant health problem and may need to see a doctor. Nurses in facilities are trained to recognize physical health problems, and there is a physician assigned to each facility who can immediately initiate treatment.
  1. You simply can’t provide the amount of socialization that a long-term care facility can. People with Alzheimer’s need to be around other people for socialization. Patients living in a facility have the opportunity to interact with staff and other patients on a daily basis.
  1. You can’t provide the frequency and quality of activities a facility can. Nursing homes have specially trained activity directors who devote 100% of their time to providing meaningful activities for residents.
  1. You are not an expert at communicating and interacting with the person. People with Alzheimer’s may exhibit difficult behaviors. Most personnel in facilities receive training for dealing with these.
  1. Placement Will Almost Certainly Be the Best Solution for You and Thus for the Patient. Although you are probably staunchly dedicated to caring for the person at home, providing 24/7 care is exhausting. And you simply can’t provide the best care if you’re burned out all the time.




10 Things People With Alzheimer’s Taught Me

Wednesday, July 16th, 2014

I was a caregiver for Ed, my beloved Romanian life partner, for seven years when he had Alzheimer’s disease. Furthermore, I currently volunteer to make weekly visits to four women who live at Clare Bridge, a Brookdale Senior Living memory care facility in Overland Park, Kansas. (I refer to them as “my ladies.”) Here are the ten most important lessons these people have taught me.

  1. Simple pleasures can bring great joy to a person with Alzheimer’s
  1. People with Alzheimer’s usually enjoy getting gifts – no matter how small
  1. Pets, children, music and art may reach them on levels we cannot
  1. Just because they don’t talk doesn’t mean they aren’t perfectly aware of what’s going on around them and what people are saying to and about them
  1. There’s usually no reason to tell them someone is dead (Tell them a white lie instead – that the person will be back soon)
  1. Correcting them about something will probably either embarrass them or else start a big argument
  1. People with Alzheimer’s usually adjust to change more quickly than we do and they soon forget unpleasant things that happen to them. We may be the ones who continue suffering
  1. They can still enjoy life, even if only for brief periods of time
  1. People with Alzheimer’s may remember past love and also experience love in the present
  1. People with Alzheimer’s can be humorous at times – Then we can laugh with them.


Entertaining People With Alzheimer’s – The Simpler, the Better

Sunday, June 29th, 2014

Simple pleasures can indeed bring great joy to people living with Alzheimer’s. Often the activities can be based on something that brought pleasure to the person before getting Alzheimer’s. Here’s a little story that can serve as an example.

When I went to visit Ed one day, I realized I’d forgotten to bring any ‘props’ for the visit. Usually I brought something to amuse Ed such as a new stuffed animal, a book with colorful pictures, some of my photographs, a CD with classical music or something like that.

Those things engaged his mind, to the extent that was still possible, and gave us a focal point for interacting.

Suddenly I realized I was wearing a coat with numerous pockets I was sure he would love to explore. I thought the fact that he enjoyed exploring pockets and compartments in clothing, purses or brief cases so much was somehow related to his life-long fixation on ‘luggages’ and his love of exploring all their different compartments.

He spent 30 minutes gleefully exploring all the pockets in the coat. Then he smiled at me and told me twice how happy he was that I had such a wonderful coat. I was touched that that wonderful demented man was happy for me.

That was so typical of Ed. Instead of saying how happy he was to play with the coat, he said how happy he was that I had it. As I left I felt loved. I also felt deeply gratified I’d been able to bring him so much happiness with a simple coat. Just a simple coat with a few pockets.


What to Do When Your Loved One Asks You the Same Question Over and Over

Monday, December 23rd, 2013

I recently wrote about what to do if your loved one keeps telling you the same story over and over. Now I’ll write about what if they keep asking you the same question over and over.

I volunteer to visit three ladies with Alzheimer’s at a local memory care facility. One day I was visiting one who loved Elvis – we’ll call her Nancy. So I took an Elvis CD and a portable CD player along to my first visit with her

After I played a couple of songs, Nancy asked me, “What’s that machine?”

“It’s a CD player,” I answered.

“Where did you get it?” she asked.

“At Radio Shack,” I said.

“How much did it cost?” she asked.

“Around $50,” I answered.

“Do other people have one?” she asked.

“Yes,” I said.

Well, that was a lucid conversation on her part. But the interesting thing is that she immediately asked me the same four questions – word for word – three more times. Each time I gave her the same exact answers.

Many people with Alzheimer’s keep asking you the same question over and over. This can be very annoying – to say the least.

But if we try to find a way to stop them from doing it we will be very disappointed. They will not stop it. They cannot stop it.

It’s important to understand the reason for the repeated questions. It’s simply because they instantly forget that they just asked us the question (and what we answered). So each time they ask it’s as though it’s the first time they have ask us. And most likely it’s a question they feel they really need an answer to.

Had I expected Jean to be “normal,” I would have become irritated. But since I understood that she couldn’t help repeating all those questions, I just relaxed and patiently answered each one over and over.

My primary advice in this type of situation is to feel empathy for your loved one who can’t remember the answer to what must be for him or her a critical question. When you feel empathic I can bet your irritation will vanish.

Try it and see.



How I Survived 7 Years as an Alzheimer’s Caregiver

Thursday, September 19th, 2013

How did I cope as a caregiver?  I had no idea how to survive the following years, but little by little I discovered things that helped tremendously:

1.    I Had an Alzheimer’s Caregiver Coach

The Greater Cincinnati Alzheimer’s Association Chapter had a free online coaching service for Alzheimer’s caregivers. I emailed my coach every single day and she responded with thoughtful, empathic emails back to me. It was the first thing I did every morning when I got up, and I looked forward to her answers throughout the day. We developed a close relationship that was extremely helpful to me.

2.    I Kept a Journal

I chronicled my visits to Ed, his gradual decline, my feelings, and my day to day activities. It gave me a way to document my caregiving journey and to remember the positive events as well as air the negative ones.

3.    I Learned How to Get Along With Ed Better

As Ed’s dementia progressed he became extremely difficult to get along with. I was at the end of my rope when I invited a friend to have lunch and discuss the problem. She told me three things she said would help:

–       Don’t bring up topics that might upset Ed

–       If he does get upset, change the subject quickly

–       Don’t argue, correct or contradict him

When I finally mastered these tips, our arguments decreased considerably.

4.    I Took up a Hobby (Photography) About Which I Became Passionate

I became obsessed with my new hobby. I felt compelled to take photos. I would spend hours working on a single photograph. I The best thing about my new hobby was that time stood still when I was doing “a shoot.” It took my mind completely off Ed and his condition.

5.    I Made Peace With Alzheimer’s

One day I realized a profound change had taken place in my heart. I began enjoying my visits to Ed again. I became aware that I had accepted his condition and I had found a way to relate to him. A way that was satisfying for both of us.

Just seeing him smile and hearing him laugh had become more than enough to make up for losing our previous relationship. Our love had endured even despite Alzheimer’s

5 Things to Never Say to a Person With Alzheimer’s

Thursday, September 12th, 2013

Marie & Ed in Love AgainDon’t Tell Them They’re Wrong About Something: To let the person save face it’s best not to contradict or correct them if they say something wrong. If they’re alert enough, they’ll realize they made a mistake and feel bad about it. Even if they don’t understand their error, correcting them may embarrass them.

Don’t Argue With the Person:  It’s never a good idea to argue with a person who has dementia. First of all, you can’t win. And second, it will probably upset them or even make them angry. The best thing to do is simply change the subject – preferably to something pleasant that will immediately catch their attention. That way they’ll likely forget all about the disagreement.

Don’t Ask if They Remember Something: When talking with a person who has Alzheimer’s it’s so tempting to ask them if they remember some person or event.  Of course they don’t remember. Otherwise they wouldn’t have a diagnosis of dementia. It could embarrass them if they don’t remember. It’s better to say, “I remember that we had candy the last time I was here. It was delicious.”

Don’t Remind the Person that a Loved One Is Dead: It’s not uncommon for people with dementia to believe their deceased spouse, parent or other loved one is still alive. If you inform them that the person is dead, they might not believe it and become angry with you. If they do believe you they’ll probably be very upset by the news. What’s more, they’re likely to soon forget what you said and go back to believing their loved one is still alive. An exception to this guideline is if they ask you if the person is gone. Then it’s wise to give them an honest answer, even if they will soon forget it, and then go on to some other topic.

Don’t Bring up Other Topics That May Upset Them:  There’s no reason to bring up topics you know may upset your loved one. If you don’t see eye-to eye on politics, for example, don’t even bring it up. It may just kindle an argument, which goes again the second guideline above. You won’t prevail and it’s just likely to cause them anger and/or frustration.