Communication is Key to Being a Good Caregiver

 If you are the primary caregiver for your loved one, you might not be thinking about how communicating effectively might benefit your loved one or your ability to care for them well. However, as primary caregiver, you are the focal point for which all communications are channeled. Some of those conversations will need to be relayed to others involved in your loved one’s care such as a physician, a spiritual counselor, the hospice team and maybe family and friends who are also providing support. How effectively you communicate can make a difference in the quality of care your loved one receives.

Even if you have a close relationship with the person you are caring for, these discussions can be difficult and emotionally charged. Try a few of these suggestions and see if they help:

  - Calm yourself before beginning a discussion. Breathe deeply and settle yourself into a peaceful place before beginning. Your loved one will be able to sense if you are tense and upset. Remember to focus on what is best for your loved one. It might help to think of yourself in their position.

  - Really listen to what they have to say. Resist the urge to interrupt with thoughts of your own. Allow the person some silent time to think and to take time to form a response. Take it slow.

  - Use body language to communicate more effectively. Look your loved in the eye. Hold their hand or put your hand on their arm. Touch is an important part of communicating deeply.

   - Avoid trying to do other things while communicating. This can be distracting and you might miss something important. Also, it makes it look like you aren’t totally focused on what your loved one is trying to convey to you. This might damage trust in the long run.

         - Pay attention to details. Does their behavior match what they are saying? They might feel awkward or scared about saying what is really going on. They may be afraid of losing more and more independence. Make sure to double check gently with them if something doesn’t sound right. Assure them that you are there to do your very best for them.

           - Avoid arguing, as it will only lead to more tension and loss of trust. Use humor to dispel stress filled times. Laughter is a great way to make everyone more comfortable.

     - Write things down if you need to. Your next step will be to communicate things to others on the caregiving team and you want to make sure you don’t forget anything. Use a Caregiver’s Notebook to record good notes.

The next step in communicating is to talk to other caregivers. Hopefully you have recognized that you are not the only one who can care for your loved one and you have a whole team of caring people willing and able to assist with patient care, running errands, organizing food and giving you a break.

Provide clear, accurate and consistent information to all caregivers involved.

Find a way to communicate with all caregivers in a timely fashion. Consider setting up a Facebook or email group in order to keep everyone current. This is especially a good idea when communicating with family and friends who are out of town. You can share video and pictures as well.

Clear, honest, timely communications will make you an excellent support person for that dear person you are caring for.

Care for Caregivers, Know Your Limits

As with any difficult period you go through in life, caring for a seriously ill loved one is a job you might gladly accept, but the impact on your physical and mental health and your relationship with your family, can be severe. The National Alliance of Caregivers has done extensive research on the subject:

“Nearly three quarters (72%) of family caregivers report not going to the doctor as often as they should and 55% say they skip doctor appointments for themselves.

63% of caregivers report having poor eating habits than non-caregivers and 58% indicate worse exercise habits than before caregiving responsibilities.

20% of employed female caregivers over 50 years old report symptoms of depression compared to 8% of their non-caregiving peers.”

By making you aware of these statistics, we hope you will take a few moments to reflect on just how important taking care of yourself is to the process of providing outstanding support to your loved one who needs you now.

Becoming a caregiver may or may not have been a conscious decision. You may be gladly caring for your spouse or partner out of love and dedication. You feel it is your choice and duty to them and you would not want to be anywhere else during this time.

On the other hand, maybe you are the only child living close to your parent who is facing the end of life. You may be feeling the weight of the responsibility that has become yours. Either way, the path you are on can be  a lonely and difficult one, so you should make a conscious effort to take care of yourself both physically and emotionally.

The real challenge is to know yourself and your limitations in order to take care of yourself. This precious time you have to spend with your loved one will be richer if you are healthy and whole.

Here are some ideas for doing just that. We hope some of them will spark your interest and provide you with avenues for caring for yourself in addition to your loved one.

First and foremost, give yourself and your loved one the best outside help and support you can find. You may feel like you have to do this all alone. That is a common misconception. You are most certainly not alone. Hospices, like Hospice of Santa Cruz County can provide a wide range of options for you and your loved one to choose from. A hospice nurse  will help develop a plan with you that is just right for your situation.

Educate your self about your loved one’s disease. The more you know, the less fearful it will seem and you will be better equipped to help your loved one if you understand what’s going on. Check out information from the library, online information sources and ask the doctor or your hospice team any questions about things you don’t understand.

Keep a Caregiver’s Notebook. Use it for record keeping or writing down those questions that come up so you don’t forget to ask them later. You can record when medications need to be taken by the patient or changes you notice.  The notebook can also include a calendar to keep track of your own appointments so you don’t miss medical appointments, exercise classes, group support meetings or therapy sessions.

On that calendar, make sure you schedule caregiver breaks, which can be provided by one of your hospice team members or family and friends. If you strive to follow your caregiver’s calendar, you will keep yourself healthier and be the best caregiver you can be.

The little things CAN make a difference; things like eating right, exercising, expressing yourself by writing or through art. Watch movies you like with your loved one and invite other family members or friends so you have others around you. If you love books, read them aloud or get books on CD. Your loved one will enjoy them and so will you.

Attend a support group. Emotional health is just as important as physical health. There are many organizations in your community willing to assist with emotional support. Your hospice team members can help you find them. If you don’t feel comfortable in a group setting, try one-on-one counseling through your church or a therapist.

Remember to follow the Cardinal Rule of Caregiving: Take care of yourself so you CAN take care of your loved one.

How to Shoot a Photo to Remember

Editor's Note: Here is a great post we'd like to share by Susan Seliger via The New York Times.

Sometimes the realization comes almost too late — you sense that your parents or other loved ones may soon be gone, and it dawns on you that you don’t have any recent photos to remember them by.

Sure, you might have a few photos of them in their youth, before you even knew them. But what about a photo of them now, so you can remember the person you have come to know so intimately over these years of caring for them?

Those photos are harder to come by. As readers of this blog know, those of our parents’ generation did not grow up with a camera in their pockets to record every moment with friends on Facebook.

A lot of people who are now elderly “only have a high school senior photo – they don’t ever visit a photographer again,” said Steve Bedell, a professional photographer in Dover, N.H. “That’s why it’s so important to document these people at an older age.”

Mr. Bedell began doing just that several years ago, when his mother-in-law moved into a nursing home. He found the process so moving that he eventually took photos of 30 of the other residents, too, at no charge — to the delight of the residents and their families.

You don’t have to be a professional to take a memorable photo, of course. But snapping the elderly involves some unique challenges. So I consulted several experts in this area for their tips.


One thing they all agreed on: It’s never too late. Even if your relatives are frail or suffering from dementia or in the hospital or a nursing home, there are still ways to capture the essence of who they were and, beneath the lines and curving spines, still are.

Here’s how to take your best shot.

1. Help your loved one get dressed for the occasion.

“Hospital gowns depersonalize a human being,” said Dr. Jeffrey M. Levine, a geriatrician at Beth Israel Medical Center in New York who has been taking photos of the elderly across the country for decades. (See his Web site and many of the pictures in the slide show at the top of this post.) If dressing is not an option, at least help cover the person with a favorite shawl or quilt to add a personal touch.

“My father loved to put on hats and scarves and have his picture taken all bundled up,” said Susan Sermoneta, an English teacher at the Fashion Institute of Technology who spent six years photographing her father (some of the results are posted on her blog) until he died in February. Women, especially, may feel more relaxed in front of the camera if you’ve helped them apply some makeup or they have had their hair done (many nursing homes have salons).

2. Shoot in a cozy room, or at least in a comfortable position.

If your relatives are at home, find the room that makes them feel relaxed, like the kitchen. If they’re in a hospital, try to catch them when the hospital staff is changing the bed linens; they often move the patient to a nearby chair. Lying in a bed makes anyone feel weak and exposed.

3. Be sensitive to quirks and vulnerabilities.

If they have injuries or scars or IV tubes that make them self-conscious, reassure them that you’ll try to keep those things out of the photo.

“My father thought profiles were his best angle, so he would pose that way — always with his hands crossed over his chest,” recalled Ms. Sermoneta. “I asked him why, and he said, ‘If I don’t hug me, who will?’”

4. Bring in friends or other family members to engage with the person.

Never say “cheese!” Interacting with others will help animate their features and make them look — and feel — more cheerful and lively. Grandchildren and babies can be especially handy for eliciting natural smiles, said Mr. Bedell, “as long as you can control the grandkids” and send them home before everybody is exhausted.

5. Put on some music.

Music is relaxing (for the photographer, too), but for those with dementia, it also can sometimes spark unusual focus and clarity. (See “Revived by Music”, a blog post by my colleague Paula Span.)

“One elderly nun I photographed had lost her ability to speak because of dementia — but if you brought her to Mass, she could sing the hymns,” recalled Dr. Levine. “It connects dots in their brain and gives them a sense of well-being.”

6. Hand them a memory prop to get them talking.

Sometimes all it takes to get even elders with dementia talking happily about their lives is to have them hold an object that stirs up memories.

“I had a patient who was a fireman who kept a toy fire truck and the awards and medals that he had gotten,” said Dr. Levine. You should be careful with war memorabilia, though, Dr. Levine warned, as it may agitate some veterans.

7. Ask simple questions that play to their strengths.

Sometimes just asking about what games they played as children can trigger some great conversations. Questions that remind older people of who they used to be when they felt strong and independent can produce lively responses.

Dr. Levine recalled visiting an uncle with severe dementia who had been a doctor. “He still loved playing doctor,” said Dr. Levine, “so I asked him about a blood clot I had under the nail from slamming it in a door, and he grabbed my hand to examine it as he had done when I was a child.”

8. Forget the flash.

“You don’t want to have a big flash popping off in their faces,” said Mr. Bedell. It’s distressing, and the harsh light makes everybody look worse.

To use natural light, have your subject sit near a window or take her outside in the shade of a tree to get soft, even lighting. Remember, your subject should be facing the source of the light while you, the photographer, keep your back to it.

9. Don’t take pictures of people eating.

Resist that temptation, even though it may be one of the few times in the day when a very sick person is awake and alert. “They look really weird,” said Ms. Sermoneta. Not surprising – who does look their best when chewing?

10. Get close.

One of the big mistakes amateur photographers make, according to several of the pros, is that they are reluctant to get close enough.

That doesn’t mean you should stick the camera in your subject’s face. “I use a Telephoto lens so I can zoom in tight with just the head and shoulders filling the frame,” said Mr. Bedell. Even most standard point-and-shoot digital cameras have a zoom feature.

11. Know when to eliminate or include the background.

If your loved one is in a hospital or institutional setting, all those dangling wires and flashing machines can be just plain sad. Obscure that background by focusing closely on the person’s face (see Tip No. 13).

But sometimes people’s environment can provide the critical details you’re looking for to reveal their character and capture their spirit. “I photographed one nursing home patient who made herself a little shrine with angels, and a couple in Santa Fe who surrounded themselves with objects in their home that they loved,” said Dr. Levine.

12. Focus on body parts for variety.

After you’ve done the more traditional portrait, zero in on the parts. (Yes, sometime the sum of the parts is actually more than the whole.) “I like to zoom in on the hands, the eyes, maybe even shoot from behind or at other odd angles,” said Ms. Sermoneta.

13. Take lots and lots of shots.

“People always say to me, ‘Oh, I wish I had taken photos of my mother or father.’ Just take them!” said Ms. Sermoneta. Hundreds of them. “If you take enough, you’ll get one that feels true.”

14. Keep the sessions brief.

“I used to schedule 20 minutes for each person, but I found that the first 10 minutes is usually enough,” said Mr. Bedell — that is, unless you have friends and relatives around interacting with them.

In that case, you’re as good as invisible, so you can keep on shooting discreetly for as long as the subject’s energy — and yours — lasts.

15. Use these photo sessions as a chance to connect.
When you ask questions about your loved ones’ past, you’re not just getting them to look lively. You’re opening up an opportunity to discover things you may have never known.

For those whose relationship with a parent may have been awkward or troubled, examining the parent through a camera lens — instead of through the eyes of a vulnerable child — can provide the distance that, paradoxically, can bring you closer.

“My father was always hard to talk to — he was a drunk and sarcastic. Then he had dementia,” Ms. Sermoneta said, which made communication even harder. But she found that taking pictures of him gave her a way to see him more sympathetically and connect with him, without words getting in the way.

As Children Become Caregivers

Human nature dictates that we often experience child-parent struggles. The blurring of identities as our parents advance in age and we become their caregivers frequently intensifies these struggles. This can create tremendous strain on our ability to manage the day-to-day stresses of these new roles. But there are some relatively simple ways to handle the changes in your relationship and make the transition easier on you both.

Simply stopping and counting to 10 before responding to your parent will afford you precious seconds to calm yourself and potentially avoid an unnecessary argument. Those moments of deep breathing and hesitation can also give you an opportunity to more fully understand your reactions to stresses in your relationship. This, in turn, will help you transform your fight-or-flight instincts into more positive responses that can ultimately strengthen and deepen your bond with your parent.

If your parent has a tendency to use verbal negative cues to trigger you into offering an angry response, consider turning the avoidance of these “hooks” into a personal contest. See how many times you can refuse to take the bait, considering each time you pass up a negative hook an internal private victory. Understand that the best way to win an argument is by peacefully and calmly ending the discussion altogether.

Sometimes old patterns and routines can lead to falling into the same old traps and ruts. Try changing things up with new scenery and unexpected activities. This might refresh your outlook and help you and your parent see each other in a different, more compatible light where communication is easier and calmer. Along these same lines, introduce your parent to the adult you by involving them in your work, professional interests and colleagues if possible. By helping them see you as an adult instead of a child, it may be easier to break the old parent-child trap and talk with one another rather than at each other.

As your parents age, it’s important to maintain an open mind about your interactions with them. Understand that the aging process is difficult on them as well. Their lives are changing, as is yours, and these changes are often frightening and complicated. The fewer expectations you have on your relationship, the easier it will be to remain flexible and adaptive as you both journey through this unfamiliar territory. To remind yourself about the good times during those moments when things are less pleasant, keep a record of any positive interactions you have with your parents. You might even want to write a note to them during these times, to share your good feelings and happy experiences as a part of their lives.

Most importantly, remember to reward yourself for changing outcomes, avoiding old traps and restructuring your reactions. Refusing to take negative bait, being patient, and remaining flexible and adaptive are difficult challenges. Accomplishing these goals should be viewed as a personal victory. So give yourself a special treat for the effort you put into making these changes – a massage, favorite meal, time alone to read or relax to soothing music, whatever refreshes and renews you. As a caring and compassionate adult child of aging parents, you deserve it. And you’ll be better prepared to provide sensitive, loving support as a result.

Caring Stories: Celia Thompson Taupin

Bring comfort and care when it’s needed most

As Celia Thompson Taupin discovered in caring for her former husband, Jean, relieving pain is essential to living life in comfort and with dignity. Hospice of Santa Cruz County was there to help when help was needed most. Celia shares her story.

In his 91st year, my former husband Jean became progressively ill due to various health issues. In one six-month period, we took Jean to his internist, a pain doctor, a dentist, an optician, an audiologist, and a psychiatrist. We also made several long visits to the emergency room.

Jean’s biggest complaint was of severe back and leg pain. The doctors attributed the pain to degenerative arthritis and couldn’t offer anything that might help lessen his discomfort. We found his doctors impatient and dismissive and when they did refer Jean to a pain specialist, that doctor could not see him for several months.

Over the next few moths, Jean’s health continued to worsen and he began to lose his will to live. It was suggested that we involve Hospice. A Hospice nurse came out to evaluate him, and explain how hospice care worked. Weall agreed to the conditions of his becoming a hospice patient.

The Hospice staff gave us informed advice about Jean’s conditions. Karen, Jean’s caregiver, and I no longer had to frequently question whether or not to take him to the emergency room. Hospice provided him with necessary medications that gave him comfort, and they instructed us on how and when to safely use them. Once Jean had adequate pain relief, he stabilized and then actively improved. The peace of mind in simply knowing Hospice was available if he needed them added to his comfort level.

A Hospice nurse was able to talk with Jean in a way no other professional had before and she achieved a working alliance with him. She provided helpful suggestions to both Karen and myself about how we might best care for him. For Karen, having the ability to contact Hospice staff day or night was a great help. Frequently, Hospice professionals bathed Jean and assisted him with general personal care. Both of our assigned hospice aides provided excellent service and one of them was able to converse with Jean in his native French, which was both stimulating and reassuring to him.

Overall, the care that Hospice provided greatly reduced the anxiety we were all experiencing and greatly improved Jean’s general well being. Hospice not only greatly benefited Jean, it also transformed the care-giving experience for our family. In his last months, Jean achieved a level of acceptance and closeness to those around him, which was perhaps the greatest he had ever known.