Archive for April 2014

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Should a Person With Alzheimer’s Be Told the Diagnosis?

Monday, April 28th, 2014

This can be a difficult ethical issue. Telling or not telling the patient about the diagnosis is a personal decision. “In most instances it’s better to let people know,” says Carol Steinberg, President of the Alzheimer’s Foundation of America. “They have a right to know. This helps them understand what’s going on and work to come to terms with it. It also allows them to participate in medical, legal and financial decisions that will have to be made.”

In some cases, however, the diagnosis is best not communicated to the patient. I personally decided not to tell Ed. He had often told me he’d commit suicide if he got Alzheimer’s, and I knew he had a stash of valium tablets he’d been amassing over the years for that very purpose. I wasn’t sure he’d actually do it, but I didn’t want to take a chance. He was an extremely strong-willed and proud man.

It should be pointed out, however, that according to Steinberg, the role of Alzheimer’s disease or a related dementia as a risk factor for suicide is controversial, with the risk linked to co-existing depression in some studies.

 

3 Tips for Restoring Harmony to Your Relationship With Your Loved One

Thursday, April 24th, 2014

Some people with Alzheimer’s may at times be extremely difficult to get along with. The following personal story provides three tips that may help restore harmony to your relationship if your loved one’s behavior has become challenging.
The memory and mental status of my beloved Romanian life partner of 30 years were declining slowly and he was becoming incredibly difficult to get along with.

Desperate, I invited my friend and colleague, Irene Moore, MSW, to lunch to discuss ‘a problem with Ed.’

Irene knew a lot about Alzheimer’s. Not only was she a specialist in geriatric social work, her mother had died from Alzheimer’s several years earlier.

A few minutes into lunch Irene asked, “So, how is Ed?”

“Actually,” I began, “He’s incredibly irritable, angry, mean and emotionally abusive.”

“Well,” Irene said, “let’s talk about how to manage the situation.”

“Yes, please,” I said.
“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.”

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

So I decided to try it. And that’s how it came to be that as Ed’s mental state deteriorated I agreed with him more and more. About important things, unimportant things; political issues and mundane day-to-day issues; silly things and serious things.

Although this whole plan seemed ridiculous at first, I found that it did stop most of our nasty fights, and our relationship returned to its previous tranquil status. I eventually realized it really was better to have peace than to be right.

Using Music to Connect With a Person Who Has Alzheimer’s

Sunday, April 20th, 2014

Ed & the Violinist 1

 

 

 

It’s well-known that music often reaches people with Alzheimer’s in a way we cannot. But sometimes it’s better not to use it. Learning when to use music and when to not use it is the trick. Here are some examples.

My Romanian life partner, Ed, had always loved classical music. So I once put on a Mozart symphony and pretended to be conducting. I emulated the flashy type of conductor he loved. When I finished he looked at me with wonder and whispered, “What you did was so beautiful!”

Another way I used music with Ed was that I hired a classical violinist to come and play a concert just for Ed in his room. He was absolutely ecstatic

I visit several ladies with Alzheimer’s at a local memory care facility. Some just love listening to music – others don’t. I have asked each what type of music she likes and I have tried playing music for most of them.

Two loved it deeply. For example, Ruth (not her real name) loves big band music. When I play it for her she is transformed into one of the happiest people you’d ever want to meet.

Another lady (Carolyn – since deceased) also loved music – especially Tchaikovsky. So I played selections of the Nutcracker Suite every time. She smiled and tapped out the rhythms on her lap. And she thanked me so much for bringing the music

There are times, however, when it would probably be better not do so. For example, as much as Carolyn loved listening to Tchaikovsky, when her health deteriorated considerably she once told me that the music was confusing. I realized that I should stop bringing music for her.

This goes to show that while a person may love music at one stage of their illness, their desire to hear it may change over time, and it’s important to continually monitor their interest.

Another lady, Ethel, is a devoted Christian. So I took some hymns to play for her. She didn’t show any reaction to the music. She was far more interested in my portable CD player. So I continued playing the hymns, but it was to give her the pleasure of seeing the CD player, not necessarily hearing the music.

Still another of “my ladies,” Nancy, loved Elvis. But when I played it for her she became distressed. She told me it was so beautiful it made her cry. Consequently, I don’t play Elvis anymore.

When I asked Sue what kind of music she liked, she said, “Oh, I don’t know. I’d rather not sit around listening to music.”  She said this in a fairly stern tone of voice, so I don’t play any music for her either.

Does anyone have any stories related to using or not using music at your visits?

 

Gifts Can Bring Joy to a Person With Alzheimer’s

Wednesday, April 16th, 2014

Everyone loves getting presents and people living with Alzheimer’s are no exception.

I originally learned about the importance of gift giving from my beloved Romanian life partner, Ed. When he put on a new pair of shoes I brought him, he exclaimed, “These are the most beautiful shoes I’ve ever had.

They weren’t especially beautiful. They were just an ordinary pair of black Dr. Scholl’s with Velcro fasteners. But to him they were special.

Then one day on a whim I bought him a little yellow stuffed chick.  I was afraid he would be insulted that I took him a child’s toy.

But I didn’t have to wait long. Soon he held it to his chest, petted it and kissed it. Then he looked at me and said, “Thank you! Thank you so much!  I never had such a lovely present in all my life!

More recently the value of giving gifts to people living with Alzheimer’s was reinforced by some of “my ladies” – women I volunteer to visit at a local memory care facility.

One day I took Ethel a small wrapped gift – a decorative note pad with a magnet on the back.  When she saw it her whole face lit up.

She was so excited that I was afraid she was going to be disappointed. So I told her, “It’s just a small gift, Ethel. It’s no big deal.”

Her response was very touching.

“I know, honey, but it’s a present.”

By that she meant she was happy to get a present no matter what it was.

Another “lady” is Ruth. Ruth loves big-band music, so I took her a CD of Glenn Miller. She was ecstatic. It was a true joy to see her so happy.

Here’s a tip: I always wrap the presents, even if they are little things you might not ordinarily wrap, such as a couple of cans of Dr. Pepper I took Ethel. She really enjoyed tearing off the wrapping paper.

You should be prepared, however, for a gift to be instantly set aside and subsequently ignored.

You see, people living with Alzheimer’s apparently enjoy seeing and unwrapping a present more than they actually enjoy having it. I think that’s because they immediately forget about it once they’ve opened it.

The gifts bring them joy for a short time and that’s what matters.

Does anyone else have any stories about giving gifts to their loved one?

Grief and More Grief – A Tragic Emotion for Caregivers

Sunday, April 13th, 2014

At the beginning of the caregiving journey many experience deep grief and I was no exception. I kept a journal of my time. Here are some of my entries about grief.

Grief: I just realized something very sad today. Namely, Ed doesn’t need me anymore. For years after he stopped driving, he needed me for everything – to deliver groceries, medicine, library books, dry cleaning – you name it. I also did many other tasks far too numerous to list here.

But now his every need is taken care of. When you take care of someone so much for so long and then they no longer need you at all, there is such an enormous vacuum and you feel so useless and unneeded.

More Grief:  Today I’m thinking back to the time just before Ed went to the Alois Center.  I went to his apartment every day in an effort to make sure he was safe.

When he went to the Center, I visited every day – because it was hard to let go and let the Center take care of him, because I wanted to see him, and because I had no earthly idea what else to do with my time after years of caregiving.

I missed him all the time and was lonely for the first time in my adult life. Sometimes I even forgot where he was and thought to myself I’d stop at his apartment on my way home from work.

I have tried everything I can think of to have more “meaningful” (to me) conversations.  (I should point out that he is ecstatic every time I visit, but at this point I seem to care only about myself.)

Occasionally it works, but usually it doesn’t.  It makes me angry at him, even though I know he can’t help it.  I never want to go.  I usually don’t have the mental energy to try to have an interesting exchange so I just sit sullenly and listen to his oft repeated (word for word) monologues.

I need to find a way to adjust but I can’t imagine how I ever will. I’m deep in the clutches of grief.

Interminable, Insurmountable Grief:  Today I’ve been thinking a lot about grief. About how you lose them, but they’re still here.  About how many years the grief may last before they are finally gone – and then you have to begin grieving all over again.  It seems interminable and insurmountable.

This is all overwhelming to me.

 

Entertaining People With Early – to Mid-Stage Alzheimer’s

Sunday, April 6th, 2014

At the early stage of Alzheimer’s you can often entertain patients by engaging them in whatever fun activities they enjoyed before developing Alzheimer’s.

Some games may need to be adjusted, however, to accommodate your loved one’s diminishing mental capacity. For example, you may need to play a child’s card game instead of bridge; checkers instead of chess. Or, if the person previously enjoyed jigsaw puzzles, you may need to find ones with fewer and larger pieces (see below for a source of these).

At the mid stage of the disease, people with Alzheimer’s may have more or less the mental and social skills of a toddler. While it’s excellent to do the standbys – things like looking at old pictures or watching movies together, those are somewhat passive.

With a little thought you can find more active ways to spend time together, such as giving your loved one toys or other “props” that the two of you play with together. The key words here are “play” and “together.”

Some people with Alzheimer’s cannot be reached by any means, but try experimenting with the ideas mentioned here.

Note: You can find puzzles designed especially for Alzheimer’s patients at Max Wallack’s website, www.Puzzles to Remember. They come in various sizes and number of pieces to accommodate the skills of early or middle stage patient and they have scenes that are appealing to people with Alzheimer’s.

Do any of you have any other methods for entertaining people with early- to mid-stage Alzheimer’s?

The Pros and Cons of Placing Your Loved One in a Facility

Wednesday, April 2nd, 2014

Author’s Note: This post assumes there is a decent, affordable facility within a reasonable driving distance. It also assumes that the person with Alzheimer’s is in the mid- late-stages of the disease, and high quality caregiving at home is becoming increasingly more challenging if not impossible.

CONS

People living with Alzheimer’s typically want to remain in their own homes. They want to be in a familiar environment and close to their loved ones.

Family members are sometimes adamantly opposed to placing their loved one in a facility. Some view this almost as a criminal act. In many cases it’s even more difficult because if the person with Alzheimer’s staunchly objects, family member(s) may feel incredibly guilty.

In addition, the caregiver may have promised his or her loved one many years before to never put them in any kind of facility for any reason. Breaking that promise would be extraordinarily difficult. Again, if the caregiver decides to go ahead with placement he or she would probably end up riddled with guilt.

Caregivers may feel they can provide care that is superior to that delivered in a good facility, due to their love and devotion. Although personnel in a facility may indeed care about their residents, they will probably not have the depth of love that family members feel.

Finally, financial issues need to considered. There may be high quality facilities near you but you can’t afford them. In this case you may have no other option than caring for the person at home.

PROS

It takes a large team to care for people living with Alzheimer’s, especially those in the mid to later stages.  They need a doctor on call 24 hours a day. They need a nurse available at all times. They need aides, a social worker, activity professionals, cooks and laundresses.  And they need to be around other people for social stimulation. They need 24/7 supervision and they need to be in a safe, secure environment.

Providing for all of these needs can be done but it’s a full-time job. In many cases the primary caregiver has to work either full- or part-time and thus can’t provide the needed care.

The decision to place a loved one in a care facility can be agonizing, but caregivers need to consider the following: 1) Long-term care placement can be the most loving choice for their loved one and 2) Caring for the loved one is probably seriously affecting their own physical and mental health and wellbeing.  People simply can’t be good caregivers if they are exhausted and burned out all the time.

You may be hesitant because you think the person will never forgive you for placing them in a facility. Most people with mid- late stage Alzheimer’s, however, soon adjust and even forget they’ve been moved at all.

Deciding what to do can be nerve-wracking and heartbreaking, but it’s something you will probably need to do at some point. Take a step back and try to be objective. Consult with friends and other family members.  You may also want to talk with your attorney, spiritual leader and/or your physician and your loved one’s physician (if they are not the same).

Do any of you want to comment on how you arrived at your decision regarding this issue?