Chapter 7 - But there is so little time! Searching for Alternatives in a Crisis
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Sadly, the need to make quick decisions often follows a traumatic episode, after which a parent can no longer care for themselves. Strokes, falls and heart attacks may leave a person temporarily or permanently disabled. Most often, the parents wish to remain in their home as long as possible-- which is impossible, at least in the short term.
Here’s the typical scenario: dad and mom have been living independently for years in a two-story home. Mom is quite forgetful, yet they seem to be getting along pretty well. You get a call at work one morning that dad has been hospitalized. A neighbor discovered him at the foot of his driveway and he is now in surgery with a broken hip. The doctor says he won’t be able to return home, and “perhaps you should think about other arrangements.” You rush to the hospital. As you sit in the waiting room with your traumatized mother, you realize you don’t know anything about senior housing or insurance; worse, you never got around to having that “discussion,” the “Big Talk.” What are you going to do?
Do a quick assessment:
- Mom: what are her immediate needs?
- Care. If she’s in the early stages of dementia, she needs someone to watch over her.
- Transportation for visits with dad.
- Dad: what are his immediate needs?
- Ask physicians about prognosis in terms of time, rehabilitation and likely long-term prognosis
- Where are the insurance cards? What is the coverage?
- Based upon the prognosis, call Medicare, Medicaid and any other gap insurance carriers to inquire about coverage for anticipated care and rehabilitation therapies.
- Does dad have a “living will” or durable health care power of attorney? Where is the document? (Check the legal section of Toolkit for websites that offer legal forms that can be quickly accessed in a crisis.)
- You. Check with your employer for company leave policy. The Family and Medical Leave Act grants eligible employees up to 12 workweeks of unpaid leave during any 12-month period for certain purposes, including caring for a parent with a serious health condition. Employers must give the employee his/her job back (or a similar position) when he/she returns. If you have worked for many years in the same job you may have accrued vacation and sick leave that will help ease your financial burden. Check with your Human Resources Department to determine what arrangements can be made. One of our clients with a dying mother was permitted to temporarily relocate to another regional office in the last months of her mother’s life. She moved back into the family home for more than four months to help her father cope. It was important for her to be near her mother. She also recognized how critical it was to keep her father, the primary caregiver, well.
- American employers are acutely aware of the responsibility that many of their best employees have outside the workplace.
- Quickly review the other sections of Toolkit in the order that makes the most sense to you (Legal…Planning…Financial). Check to see that your parents have a durable power of attorney for health care and a living will.
- Who else can you call?
- Given what you learn, what timeframe do you have to make some long-term decisions? Often, the patient will be hospitalized for several days, after which they will be required to receive additional care in a nursing home or some type of transitional facility. Learn from the doctor how soon this will happen and from the insurance companies what coverage is available and for how long.
- Ask to see the Hospital Discharge Planner. Most hospitals have them. This person is knowledgeable about your parent’s situation, the facilities in your community that will meet their needs and will also know whether space is available. They can be a great help.
- Speaking of time, buy some for yourself and your parent. If there is, or has been, serious resistance to any kind of housing change, this can be a time for experiential experimentation. In past decades patients who needed more recovery time following a hospital stay went to a nursing home. Today, it is common for that patient to recover in a transitional care facility. This may be a nursing home but it may also be found in assisted living communities. Knowing that the move is temporary usually makes the parent more open to the experience and the long-term possibilities.
- You can make very good decisions in a short period of time using the checklists we provide in “Conducting the Search, Making the Decision…” However, there is one last phone call you might want to make before making your final selection. In every state there is an ombudsman (the list of state websites is given in the “Resource Directory”). You can call this person and ask about the facilities that you are considering. They will share with you both the number and nature of any complaints that have been lodged against facilities about which you are inquiring.
- A geriatric manager can be hired to help work through this difficult time. This is a professional who specializes in assisting older individuals and their families in meeting their long-term care arrangements. They will conduct assessments, act as a liaison to families at a distance and help screen, arrange and monitor in-home health care. You can find one in your area at www.caremanager.org. Choose carefully. This is not a regulated industry.
Depending upon the severity of the injury or episode you will have at least a few days and perhaps a few weeks to begin to make more permanent arrangements.
Hopefully, mom and dad will join in the discussion fairly quickly and you can begin to tailor the search around their wishes. Although dad may have resisted moving to a senior facility, it’s time to have that discussion. Many people find that once they have experienced care in a transitional facility, skilled nursing home or respite community, they rather like the idea. You may discover that what was objectionable the first day after surgery becomes quite palatable a week or so later. If you believe that a return to their home or the home of a relative is infeasible, begin your crisis search with permanent placement in mind. Start your search from the Great Places Home Page. Select assisted living, skilled nursing, transitional care or whatever type of facility has been deemed appropriate for the current crisis. Be careful to include any memory care needs in the initial conversations you have with the staffs of the communities you call and visit.
If the aging, infirm parent will be moving in with you or another relative, here is a checklist of modifications you might consider:
- Tub and shower grab bars;
- Remove throw rugs;
- Flooring choices (tile, wood, low-pile carpeting) that are conducive to the use of walkers, canes or wheelchairs;
- Furniture arrangements that improve flow and movement throughout the home;
- Lighting additions to improve illumination of dark or shadowy areas;
- Enlarged numbers on the telephone;
- Amplification of the phone and television set;
- In-home assistance for physical tasks such as cleaning, laundry, snow removal and lawn care;
- In-home medical monitoring of blood pressure, sugar levels and medication supervision;
- In-home bathing and meal provision;
- Ramps or lifts on exterior or interior staircases.
Next, you might consider the use of a variety of in-home health care services.
The level and variety of in-home health care services has grown dramatically allowing far more elderly individuals to stay in their home or return to their home after some traumatic episode.
Don’t underestimate the level of physical and emotional demands that will suddenly be thrust upon you and your family. Changing homes for most of us is daunting, even if it is of our own choosing. As we age, the challenges increase exponentially.
Consider this. When Marion Swanson’s father was diagnosed with Alzheimer’s she took him home to live with her. She even arranged for some in-home care in the afternoons while she was at work. But his condition worsened and Marion feared for his health and safety while she was away. She found a couple of assisted-living communities near her apartment and selected the one with the first opening. That was four facilities ago.
The first choice was a project that couldn’t provide enough monitoring and her dad wandered off. The next three were unable to provide adequate care. Her father fell several times and when Marion visited she found her father sitting alone in the hallway in need of hygiene or other attention. The facilities were understaffed and personnel resented of her requests. Her father will be finishing yet another hospital visit and she has only two weeks to find another alternative. The constant change of environment has taken its toll. She cannot afford another mistake.
Although this entire Toolkit is intended to help the adult child in both non-crisis and crisis situations, we are aware that many of you may find yourself in crisis mode. Here are a number of things that we hope will help you through it.
- Respite care is a term that is used for two different types of care. It can be both a nursing home facility that provides for short-term stays for individuals such as the father we described above. But it is also a service. You can hire care providers, both nursing and custodial to “sub” for you for a day, evening or even longer so that you can take a break from your duties. Sometimes this kind of care is arranged informally through a church or community group, but taking care of an aging parent can put enormous stress on the caregiver. Recognize that you need a break and take it.
- Don’t mistake fancy décor for quality of life in a seniors-oriented facility. Remember that the marketing director is just doing his or her job when he or she gives you the full-court sales pitch. Print off the “How to Conduct a Thorough Search,” study it, take it with you and use it to research the best fit for your parent.
- Utilize “How to Conduct a Thorough Search” to determine the housing type that is the best fit for your situation. Then begin the search. Quickly research the available facilities, set up appointments for visits and critically assess the results. If the facility where dad went to transitional care was not a good fit, make sure you know why and adjust your criteria.
One-third of all care givers do so from afar. Many of you make your home across the state, country or world from your parents. You may respond to a parent’s medical crisis and be forced to return to work and home before everything is back to normal. Or, in the absence of a crisis, you need someone to check in on your parents--to be there when you cannot. Having this substitute will offer you great comfort and is usually a reasonably priced service. This will ease the burden whether your parents are still living at home or have moved to a senior facility. Here is where you might look:
- In addition to relatives and family who live in close proximity, don’t underestimate your parent’s network. Ask a neighbor or one of their friends to check in on them for you.
- Check with your state’s eldercare services for agencies who provide such services,
- If your parent is in a care facility, ask for the names of individuals currently visiting the residents and inquire about licenses and references from other patients and their families
- If your parent is a member of a religious congregation, call the church or synagogue to inquire about the existence of an elder ministry.
Reach out. Although you may feel terribly stressed and alone, know that there is help available. Many dedicated, empathetic individuals are willing to lend a shoulder, hand or sympathetic ear if you will only ask.
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