Monthly Archives: April 2013

How to react when you hear that a friend has Alzheimer’s

Imagine the following situation; you have just heard from your geriatric neurologist that you have Alzheimer’s disease and after much sorrow,  you decide to share the diagnosis with a few good friends, even though you are in the early stages. You jot down a few notes of what you want to tell them. You know that they will be shocked as you are so good at covering up your short-term memory loss but you do  not want anyone else to tell them the bad news. You make the call and meet them for coffee, worrying how they will react.
One said; “I know how you must be feeling.”  He shouldn’t have said that because he had no idea of how I was feeling.

Another said; “There are supplements that you could take. By the way, do you walk every day? If not, you should. You should also get a second opinion, you know.” It would have been better if he had waited to see whether I would ask for his advice.

The third said; “It could be worse, you know. At least you will be with us for many years.” While that might be true, it did not make my husband feel good. On the contrary.

When he told someone at work, the reaction was; “Oh that’s terrible. Are you going to forget everything?”

The lady at the pharmacy who knew my husband well said; “Oh,  these pills are for an Alzheimer’s patient. My uncle suffered from Alzheimer’s and he wandered away whenever he had the opportunity.”

The following would have been far more appropriate:

“I’m so sorry to hear this.”

“Remember that we will remain friends. I will always be here for you.”

“I won’t keep asking you, but when you feel like talking, call and I will come.”

“Tell me how you are managing. How are you holding up?”

Alzheimer’s and my husband

SERENADE 2 SENIORS 

When faced with an awkward situation, most of us tend to look the other way.

This is what happened after my husband was diagnosed with Alzheimer’s. I knew how ill my husband was, but due to his cheery smile, he managed to cover most of his symptoms for quite some time.

Later, people found it difficult to interact with him just because he was suffering from Alzheimer’s. Instead of talking naturally, they somehow talked past him. It’s true that his memory did not work as well as ours but he deserved attention and respect. All that was needed was a hug, a handshake or a few words like, ‘you look good today,’ or ‘I’m glad I found you at home.’

There were people who spoke to him as if he were a child at kindergarten. I know that I would withdraw if someone spoke to me that way. A person suffering from Alzheimer’s is ill, not dumb. I noticed that many health workers tended to use terms of endearment like honey, dearie or sweetheart which sounded rather insincere. Why not call him by his name? People assumed that he was always confused, but he wasn’t.

I heard friends ask my husband; ‘Do you remember me? What’s my name?’ but all that this did was increase his anxiety and was not beneficial. I think it’s better to focus on the positive.

There were people who asked me questions about my husband while he was sitting with us like; ‘Does he have a good appetite?’ or ‘What does he do all day?’ I found this insulting. Even if a patient appears to be in a coma, I don’t think that I would talk about him/her while in the same room or ward. We have no way of knowing what that person absorbs.

Some friends stopped visiting because they thought my husband wouldn’t be aware of the fact that they no longer came by, but he loved people and I had no way of knowing what he remembered. I have a feeling that he always remembered the things I wished he’d forget.

The best advice I can give is:

Treat people the way you would like to be treated in the same situation.

Alzheimer’s and Dignity by Emuna Braverman in aish.com

SERENADE 2 SENIORS

Emuna Braverman writes in aish.com about an 80th birthday party she attended in honor of a friend’s mother. The only blemish being that the guest of honor had dementia.

Click on the link to read her story.

http://www.aish.com/f/mom/Alzheimers-and-Dignity.html#.UXlEBgViRPk.gmail

DEPRESSION IS NOT SELFISH

Photo and quote, written and designed by Wil.

This is the link to her website.

https://turtleway.wordpress.com/2013/01/25/depression-is-not-selfish/

Wil’s site touched me deeply, so much so, that I feel the need to share it with as many people as possible. Click on the link and you will be able to read what she wrote.

Why do some therapists say; “I know how you are feeling?”

Entering a psychiatric hospital for the first time, was pretty shocking.  So many patients were walking up and down, chain smoking. Others watched television, but not for long, and then they too, joined the rest to walk up and down, up and down, up and down.

What we needed more than anything else was tender, loving care but the staff were too busy for that. We were struggling to come to terms with what had happened to our once happy son. A psychiatrist and a social worker spoke to us and they spoke over David’s head as though he was  not present. Our David was sick, not stupid.

More than once, therapists working in that hospital told us; “We know how you must be feeling.” But they did not! Their knowledge came from text books and some experience in the hospital but it did not, could not prepare them for the reality of understanding how we were feeling. We had lost our future. Both  my husband and I had been looking forward to our first-born getting his degree at the university; we would now miss out on seeing him get married;  nor rock his babies in our arms. We mourned his happy smile, the times when he’d been so healthy that we could never have envisioned this scenario. It broke our hearts.  And all he wanted was a decent job, someone to love, and peace of mind. The voices took all that away from him.

What we needed were coping tools, lots of them. We needed good advice on how to handle our other children, how to alleviate their suffering too. One mental health professional told us to act naturally. But, there was nothing natural about this situation. It changed everything in our lives. I’d lost the son I loved so dearly to an illness I’d never heard much about previously and the future was an unknown commodity.

One psychologist told us not to upset David when he came home for weekends. In order to do that, we’d have to stop breathing, avoid scratching, walking, talking out loud and moving.  How I longed for a single psychiatrist, psychologist or social worker to offer me a word of comfort during the long years we struggled with schizophrenia.