Archive for September 2013

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Alzheimer’s Caregiving and Pride Don’t Mix

Thursday, September 26th, 2013

Some people with Alzheimer’s are sweet and easy to get along with, but others can be extremely difficult and temperamental. My Romanian life partner, Ed, fell into the latter category, at least during a certain stage of his illness.

At that time we began having major ugly arguments on average once a week, and he didn’t get over them very easily. He had angry outbursts during which he would yell at me, tell me to get out, slam down the phone on me, and refuse to talk to me for days. He even made scenes like those in public.

The only way to move forward after these displays of anger was to send him a letter of apology, even when I had done nothing wrong. That rubbed me the wrong way. I was very proud. I was right and I liked to be right. I hated apologizing – pretending to have done something wrong when I hadn’t. In desperation I had lunch with Irene, a friend who was a geriatric social worker. She gave me three pieces of advice:  

  1.  Don’t even bring up topics you think may upset him.
  2. You can’t win an argument with a person who has Alzheimer’s. Agree with whatever he says – no matter how absurd – unless there’s a compelling reason not to, and there rarely is.
  3. If he does start to get agitated, quickly change the subject.

“I can’t promise following these guidelines will stop all the fights,” Irene said. “But it’ll help. Why don’t you try it for a while and see what happens?”

“But Irene,” I said. “I can’t agree with him when he says stupid things.”

“When that happens, just ask yourself, ‘Do I want to be right or do I want to have peace?’”

I decided I’d prefer peace and so I did take her advice, and once I mastered the rules (which took quite a bit of time) it did work. It worked like a miracle. The frequency and intensity of our arguments declined significantly. For the most part we returned to our previous easy-going relationship with just a mild disagreement now and then.

I also noticed that when other people didn’t follow these guidelines when interacting with Ed, ugly arguments typically ensued. I finally learned it really was really better to have peace than to be right. It really was best to let go of my pride.

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.