Caregiving from a distance

It's not easy

For seven years, I cared for a childless, widowed aunt who lived 1500 miles away. Early on, I witnessed a general health deterioration and encouraged her to move closer to me, but she wouldn't hear of it.

After falling and spending a winter night on the cold floor, my aunt realized that she needed help. Again, she refused to move close to me and, instead, chose an assisted-care facility.

The abrupt break-up of her apartment and relinquishing of her checkbooks and credit cards brought a variety of emotions to the surface for both of us--she, giving up her independence, and me, focusing on family, job, and the impact that long-distance caregiving would have on my life.

Intimidated by the staff and frustrated by how daily life had become a scheduled event, she withdrew. I felt like I had betrayed her. I hugged her and said I understood what a difficult transition this must be and promised that I would not desert her.

Months later, when she realized that she truly would not be abandoned, Aunt Bernice began to come out of her shell. She attended regularly scheduled staff-patient conferences and became more assertive about her daily care. I consulted with her on financial matters, which made her feel a part of the decision-making process. With time, the transition became a comfortable lifestyle for her last years.

Finding the right care facility

Newspapers
The "Help Wanted" section of local newspapers provide good clues about facilities. One that advertises regularly for help may indicate frequent turnover and caregiving problems.

Government ratings
Facilities receiving Medicare or Medicaid payments are inspected and rated by the Health Care Financing Administration (HCFA). Legally, the public has access to the report (if it isn't made available to you, think "red flag").

Community resources
Contact a church or other organizations with which your loved one is associated for information about facilities in the area. Use the Internet yellow pages for information. Call the state Office of Elder Affairs for a guide to elder or residential care facilities.

What to look for

When you find a facility that looks appropriate, plan to visit at several different times of day and on a weekend. Watch the staffing and the visiting patterns. Facilities that host lots of visitors are more likely to be well staffed and to offer more programs and activities.

Observe the residents at mealtime. How is the food served? And by whom? Do people seem to be enjoying the company of their table mates? The best facilities try and serve the majority of residents in a communal dining room, which provides conversation and companionship.

Dealing with the distance

If you can't be there all the time because of distance, you need additional "eyes and ears." There are several options.

Care managers
This relatively new sector of health care providers includes individuals or organizations that act as caregiving liaisons. Discuss their credentials and fees before signing on.

Patient advocates
Establishing a patient advocate in your absence is important and comforting for the caregiver and loved one alike.

Drop-in visitors
Friends, club, or church members may be willing to make occasional drop-in visits. You can also get help from the state's long-term care ombudsman--an individual who is knowledgeable, fair, available, and will make drop-in visits.

Staff members
You can ask Aunt Helen to select a caring staff member, and then ask the staff member to help with chores and errands. She should also be instructed to call you collect if needed.

Legal and financial matters

You'll also need to monitor care and expenses. What medications/treatments are being given? What outside services are being utilized? You should immediately address any expenses you don't recognize. Read monthly statements and ask for an itemized one if not provided. Keep a record of all communications. Telephone frequently. If important issues are discussed, send a fax or an e-mail confirming your understanding of the conversation.

A Durable Power of Attorney for Health Care Decisions for a loved one is an essential, but delicate, matter that must be addressed. The loved one's wishes are honored until it becomes too difficult for her, at which time the designee has the authority to act accordingly. Most states have these forms available from the attorney general's office.

If competency is in question, you must address the sensitive issue of a transfer or sharing of decision making. Legal control can entail power of attorney, limited guardianship, or full guardianship. An in-state attorney is required to pursue any of these legal procedures.

Making it like home

There are simple ways to personalize life in a care facility and help your relative feel connected to family and friends.

Reminders
Before you visit, ask staff to leave a note in your loved one's room indicating your arrival time. Days and nights become blurred for them. The note gives a sense of time and a change in routine.

A little touch of home
Bring favorite belongings from home. Although rooms are typically small, there is space for family pictures, scrapbooks, a jewelry box, or artwork.

Make communication easy
If eyesight is diminishing, buy a telephone with large push-button numbers and place one large-print phone number per page in a billfold-size album. Depending on the sophistication of the facility and the resident, e-mail and family chat rooms are an inexpensive way to stay in touch.

Help her write letters; this generates mail and keeps her in touch with life. At Christmas time help her write a general letter and send it to friends and relatives. Or, ask people to send audio tapes that she can listen to.

Share the important events
Ask family members to videotape family reunions, graduations, births, and weddings. Include travel anecdotes, house redecorating, or any event that makes her feel a part of the family.

Celebrate the holidays
At holiday time, put up holiday decorations in the room. Have grandchildren make decorations. Plan a shopping trip. The change in routine and opportunity to choose gifts really brightens the day.

Bring care packages
Facility meals become boring and repetitive. Bring along home-baked foods. For additional variety, bring in pizza, deli and fast foods. But, first, check what dietary restrictions are in place.

Making a difference

Even though my long-distance caregiving visits were monthly, I sent a message of love and concern for my aunt. During one visit another resident said, "Your aunt may only get a monthly visit, but she gets more love than some who have relatives living in this town."

The bottom line is that there is no "perfect" place. All needs will not be met, so prioritize. Are you concerned with bedside care because she is bedridden? Does she like to be busy and be around people? Don't expect to find a loved one always smiling and happy to see you. Sometimes it will seem like a long trip just to sit in silence, but remember that you can make a difference even from a distance.