Challenges with care eased by music

There’s a beautiful story in a recent New York Times article that illustrates just how important music is to the person with memory loss.

Tom was a wanderer. When his wife, Elsie, came to visit him at a care unit for patients with dementia, he would give her a perfunctory kiss, then wander off through the rooms and stare out the window. Elsie tried to walk with him and hold hands, but he would shake her off, leaving her heartsick.

A music therapist at the facility, Alicia Clair, was searching for ways to help couples like Elsie and Tom connect. Ms. Clair asked Elsie if she’d like to try dancing with Tom, then put on some music from the ’40s — Frank Sinatra singing “Time after Time.” Ms. Clair said recently, “I knew Tom was a World War II vet, and vets did a lot of ballroom dancing.”

As Sinatra began singing, Elsie opened her arms, beckoning. Tom stared a moment, then walked over and began leading her in the foxtrot. “They danced for thirty minutes!” Ms. Clair said. When they were finished, Elsie broke down and sobbed. “I haven’t been held by my husband in three years,” she told Ms. Clair. “Thank you for bringing him back.”

It’s a lovely story, and it illustrates the power of music in the lives of the person with memory loss.

I remember the first time I heard one of our caregivers explain how she got a client to bathe. This client resisted everyone’s effort to help him bathe, and could quickly become angry and aggressive if pushed. We’d all tried every approach we knew, and then Wanda stepped up.

An hour later, the client was bathed, relaxed and smiling. We had to know: how did she do it?

Here’s what she said: “I just started singing with him. We sang, and walked, arm in arm to the sink. The room was already nice and warm, and the towels, soap and washcloth were already there (I did plan ahead at least that far). We stood in front of the sink and I turned on the water and just started splashing my hands in the water, all the time singing together and smiling.

“Pretty soon, his hands are in the water, too, and we’re soaping them up, laughing – and singing. Next, we washed his arms, slipped off his shirt and washed his torso.

“We got through an entire sink-and-washcloth bath just by singing and playing in the water together.”

It was a beautiful, relaxing and enjoyable event for the caregiver and the client, rather than a frightening time for both.

Music has some wonderful qualities. According to the article, people respond to music even when all other forms of communication no longer work. “Music, unlike language, is not seated in a specific area of the brain but processed across many parts. ‘You can’t rub out music unless the brain is completely gone.’”

If you can’t carry a tune, there’s good news for you, too. People with memory loss don’t seem to be picky: just start the music and let the caregiving – and relationship nurturing – begin.

Caregiving at one degree of separation

My neighborhood has a women’s book club that includes about a dozen of us who live within 2 blocks of each other. Some of us have lived on the same street for more than 20 years. We’ve watched our children grow up together. We’ve celebrated birthdays, graduations, weddings and births of precious, new grandchildren together. When one neighbor’s home burned to the ground in the wee hours of the morning, the rest of us were there, almost before the fire trucks arrived.

We come together once a month to talk about our kids, our neighbors and – almost always – our book. We have laughed, cried and argued with each other.

Last night, someone asked, “How many of us are dealing with an aging parent?” All but two raised their hands. One neighbor has spent the last month with her mother who lives over 1,000 miles away, finally convincing her to move into a care facility for people with memory loss. Next month, she’ll return to actually make the move with her mom.

Several of us have lost parents over the past few years. We’ve spent hours at their bedsides, in hospitals, nursing homes and assisted living communities. We’ve shared our anger at “the system” and our frustrations at being classically squeezed between the needs of our children and our parents.

While we don’t see each other much outside of our monthly book club meeting, we do know this: when it comes to being a caregiver to an aged loved one, we’re all doing it. We do it alone, often, but we know we’re together in facing the challenges of family caregivers everywhere.

Last night when we took a count, it was clear that it’s something we are all doing today. And those that aren’t personally caring for an elderly parent know someone – first hand – that is providing this care. It’s a small comfort, but perhaps, ultimately, a large movement toward increased resources, improved quality of care and better options for our aged loved ones.

After all, we’re all at the frontline of this effort today.

Transitions: making the move

You’ve finally reached the point and the decision: you’re going to help your mom, dad or other family member move from home to a care community. What should you expect? What can you do to make the transition better for both of you?

Make the move easy. When you’re planning moving day, make sure you consider how to make the move as quick and easy as possible.
* Enlist the help of every family member possible.
* Offer your loved one an option – their choice – of staying while you move their belongings or going to lunch or for a ride, while other members of the family make the move.
* Minimize the amount of things moved. Many older people enjoy the process, once the decision has been made, of gifting their items to various family members, reflecting on the items heritage or meaning during the process. Ask your loved one to select just those things he needs for basic comfort and then either store or get rid of the rest. Most moves entail downsizing significantly, so start that process off right by not bringing too much in the first place. Besides, a less crowded space feels bigger.
* Move as quickly as possible, and then relax a bit with your loved one. Allow time in your moving day schedule for a dinner together, a drink or light meal at the end of the moving day. This is a chance to focus on the relationship, not just the task of moving. That’s important on moving day.
* Leave. There will come that moment when the work’s essentially done, you’ve relaxed and chatted a few minutes, and there’s not much more to be done. You may have that feeling like you’re leaving your child at daycare for the first time in the pit of your stomach, but you need to make your exit. You need to give your loved one time and space to begin his own journey of adjustment.

Visit. Some care communities may advise you not to visit for the first few days or even weeks. Unless this is a firm requirement, smile, nod, and plan your next visit. It’s important to your loved one to know that you haven’t done the much feared “dumped at a nursing home” maneuver. Your regular visits will reassure your loved one that you’re still going to be involved, even though his physical residence has moved. Make an effort to make your visits about the relationship, too, not just tasks. Moving your loved one to a care community can relieve you of many tasks; it will never take the place of your relationship, however. Focus on your relationship by:
* Bringing in picture of your children or other family members
* Sharing meals together when you visit
* Taking walks together or taking your loved one for a drive in the countryside
* Talking about your regular daily life and routine
* Encouraging other family members, especially youngsters, to visit regularly, too.


Get acquainted. On your visits, try to get acquainted with the staff at the new community. Meet the front desk people and the manager, the dining room staff and the housekeepers. Introduce yourself, smile and thank them for their work. You’ll gain the trust and respect of important people involved in the welfare of your loved one; you’ll also know who to turn to if something goes wrong. You may want to get acquainted with other residents and their families as well, a step that frequently speeds the settling in process.

Be patient. It takes time for a person to adjust to a move. Some people will adjust quickly; others will still be adjusting several years after the move. Be patient, and let your loved one adjust at his own pace. Complaints may be frequent initially, especially about food. Listen, sympathize, but don’t rush to the manager demanding changes unless you witness the problems yourself, too. Be patient with staff, too, especially in new communities. It takes time for everyone to learn their jobs and to do them flawlessly. Expect some level of human error - housekeeping that miss a garbage can, for example, or soup served a little cool, but expect excellence in any personal care or services that are delivered. If the community laundry is cleaning your loved one’s clothes, expect that some items will go missing, and other items might get shrunk or bleached. Keep your loved one’s irreplaceable clothes or jewelry at your house, or launder them yourself (be sure to let the staff know).

Tune in to your own reactions. Be aware of those moments when you feel a wave of sadness wash over you for the losses your loved one has experienced. Feelings of sadness and guilt are normal, common reactions. You might think, “I should have cared for her myself,” but don’t let these feeling drive you to actions that make matters worse. Often, family members who are racked with guilt turn their feeling toward those providing the care, relentlessly finding fault, blame or error. If you find yourself complaining on every single visit, check in with your own feelings to see if you may be turning your own feelings of guilt or anxiety toward the people caring for your loved one. If you think you might be feeling more than the usual level of sadness or guilt, get help. Find a counselor, pastor or good, patient friend to listen and help you work through your emotions.

Many people find moving to a care community one of the most difficult tasks they do as caring family members. But most find that they’re happier, healthier and better off because of the choice, often sooner than they would ever have expected. It just takes a little effort on your part to make the transition.

Caregiving takes an emotional toll on the whole family

My friend Vickie came into my office today for a meeting. We had a chance to catch up after the meeting and I asked Vickie about her current work/family situation.

“I’m working as a caregiver for my father-in-law these days,” Vickie said. “He has late stage Parkinson’s disease and requires help with everything. We have a lift to get him in and out of bed; I’ve got to care for his catheter; it’s just a lot of work.”

I asked her how many hours each week she spent helping her mother-in-law, assuming that she traveled to their home for a few hours each day.

“That’s the hard part,” she said. “They live with us. The caregiving never ends – I can’t begin to count how many hours each week I work.”

She was excited to be out of the house for the meeting as it was just about the only break she could see on the horizon.

As I listened to Vickie I heard what I hear so often from family caregivers: the work is not only physically challenging, but emotionally draining as well.

It’s hard to be the “rock” that your family relies on. It’s exhausting, no matter how much help you get from other members of the family.

Vickie’s husband, mother-in-law, son and grandchildren are all involved in Grandpa’s care. But at the end of the day, the person they all turn to is the one with the experience and training as a caregiver – Vickie. And of course, Vickie being the person that she is, worries about them all even when she’s not there.

I don’t really have an answer or a solution. What I know is that family caregivers need our emotional support, maybe even more than they need help with actual caregiving tasks.

They need us to thank them for their work, to honor and validate their importance in our families’ lives, and the contribution they make to society as a whole.

It’s not much, but it might make a difference for Vickie and all those other caregiving family members just getting through another challenging week.

Families need caregiver training to add skills to loving care

Caregiver training is the number one topic of conversation in our office lately. We initially developed our Caregiver Certification course for people working for in-home care agencies. In-home care is one of the fastest growing segments of all senior care, and our own division of in-home care is growing at a phenomenal pace.

We’ve also been hearing stories from individuals all over the world, seeking training to become experts in caregiving.

One school in Fiji is now using our online course to train students to become caregivers throughout the islands.

Today, I responded to a woman in Mumbai, India regarding this training. She cared for her own mother through the stages of Alzheimer’s disease, and realized that she didn’t have the knowledge and skills to provide good care. At one point, she says, “I could not take it anymore.”

As she searched for answers, she says, “It then dawned on me that I was basically giving in to the situation and giving up on her.” She determined to learn as much as she could about caregiving, and found approaches that have really helped her mom. Now she wants to help others with similar diseases, but knows that she is not fully prepared for this.

We hear stories nearly every day from family members who are realizing the same thing: they want to provide care, but they’re not trained or prepared to do it well.

Family members provide somewhere between 70 and 80 percent of all care to seniors in this country. Most are caring with their hearts; many realize they need more skills training, too.

For families – and professionals – training can add essential knowledge and skills to a caring, compassionate heart.