Tag Archive for: residential care options

Moving mom: Surviving the hardest day of your life

“The day I moved my mom was the hardest day of my life,” Harriet told us. She had been able to sustain her mother, who has dementia, in an independent apartment by spending increasing amounts of time with her and hiring help from a home care agency. However it was taking a toll on Harriet, her husband, and her three young children. They considered moving her mom in with them, but she was terribly restless at their house and had walked out the front door and started down the street more than once.

Finally Harriet realized she would have to move her mother. She carefully evaluated the options and the finances and made a decision. She had promised her mom she would never move her to a nursing home and now found that she had no choice.

Moving a relative with memory loss into residential care is an extremely difficult emotional task. Sometimes families have doubts for many years about whether relocation was the right decision. This article helps you understand why it’s difficult and offers some tips to make the day go more smoothly for both you and your relative.

Why is it difficult?

  • Media depictions of long-term care. Abuses in nursing homes or assisted living facilities are headline grabbers. It is a rare story that features the millions of caring, positive staff, the innovative programs and the happy moments of life in residential care.
  • Wedding vows that include ‘in sickness and in health, ‘til death do us part.’ Many spouses feel they are violating their marriage vows by moving their partner to residential care.
  • “My mother cared for me. Now it is my turn to care for her.” Raising children and caring for a parent with dementia are not equivalent, for many reasons, even though some of the tasks are similar.
  • Old promises. Unfortunately, we can never predict exactly what life will bring, and diseases such as Alzheimer’s or small strokes are among the things that no one wants to think about. We may have made promises that we simply cannot keep.
  • Family or friends who criticize. Sometimes people around us reinforce the guilt and pain with insensitive comments, or with their beliefs (even though they are not the ones providing 24-hour care). You are the only one who knows what you can or cannot do and what is best for your relative AND you.
  • Moving symbolizes the decline of the person. For many family members, this move is a very powerful symbol of the disease progressing and the person slipping away.
  • Feelings of failure. Many families feel their relative is getting worse because they have not tried hard enough. But many forms of dementia worsen over time, despite our best efforts.

Keeping the following in mind may help you cope with your feelings on moving day and beyond.

  • You are not alone. Most families find this one of the hardest, most painful decisions they have ever made.
  • There are no clear rights and wrongs when it comes to the care of a person with memory loss. If you weigh the pros and cons of various alternatives, you will probably find that there is no totally positive outcome. You may feel you are making the least negative choice of all your options.
  • Know that caregiving does not end at the door of the residential care setting. You are still a caregiver, though your tasks may be different. Also, be aware that stress levels do not necessarily decrease with a move. You may find that you are still stressed, but the stresses are different.
  • Your relative’s adjustment may take months. If you have moved in the past, you know that it can take a long time to adjust to a new place and new people. It commonly takes a person with memory loss longer to adjust to living with others in an unfamiliar place and a new routine. Give it time.
  • “No one can care for her as well as I have.” Caregivers often say this, and it’s often true. You won’t find one-on-one care in residential settings. On the other hand, some people with memory loss actually function better and feel better in a setting with more people and activities, and when caring, consistent staff are available.

You may feel overwhelmed and sad the day you move a relative. Here are some ways to make “the hardest day” a bit less difficult:

  • Ask a friend or relative to come along for the move. Although the residence’s staff will help you and your relative get settled, someone familiar can be comforting. Harriet’s friend Gladys was able to chat with Harriet’s mother, answer her questions, walk around with her, and generally engage her. Harriet had all she could do to handle the arrangements and cope with her own feelings.
  • Dedicate the entire day to moving. Although the physical move-in may not take all day, you may find that getting your relative settled may require more of your time and attention than you planned. If possible, don’t schedule other appointments.
  • Ask for privacy if you need it. As Harriet was putting away her mother’s things, she became tearful. She was very appreciative when the move-in coordinator asked if she would like to go to the family room for some privacy. After a few minutes by herself, she was able to return to her mother’s room and continue moving in her mother’s clothing and personal items.
  • Ask for assistance with your departure. It is very common to be concerned about how to leave your relative on the first day. Staff can be quite creative in supporting you. When Harriet’s mother insisted on going with her, a staff member asked them to join her for a cup of coffee. The staff person engaged Harriet’s mother in conversation and as she began to relax, Harriet excused herself, saying she would be back shortly, and left for the day.
  • Plan something to do after you leave your relative at her new residence. Take time for yourself during the transition to a new era of caregiving. You have spent a great deal of time and energy caring for her and planning this move. Now plan something you will enjoy—a bath, dinner with a friend, a walk, etc.

Moving a relative with memory loss is the end of a long process of research and preparation. You can find much more about the steps in the process in our book, Moving a Relative and Other Transitions In Dementia Care. 

Beth Spencer and Laurie White 

How can an ombudsman help my relative and our family?

An ombudsman promotes and protects the rights of residents of nursing homes, assisted living and small board and care homes. When a resident has Alzheimer’s or another type of memory loss or dementia, their focus is on keeping everyone safe.

This is especially true when residents are experiencing behaviors that are challenging.  When a relative with memory loss experiences challenging behaviors—agitation, for example—in your home, your family is the one most affected. When your relative lives in a community, those behaviors can affect others. As well, your relative may be affected by someone else’s behavior. This is a tricky situation. Enter the ombudsman to help sort it out.

Charlie’s wife Lee, a resident in an assisted living’s memory care community, was in the advancing stages of Alzheimer’s disease. She began to be verbally abusive to residents who “were sitting in her chair” or “in her way” as she walked down the hallway. The staff had difficulty managing her behavior and protecting the other residents from her loud verbal assaults.  Another resident’s family filed a complaint with the Ombudsman’s office about Lee’s actions towards her mother. After observing Lee’s behavior, the Ombudsman met with the Director and Charlie to develop a plan of care for Lee. The plan included training staff on how to approach and respond to Lee when she was agitated. The Ombudsman requested staff to communicate and document Lee’s behavior daily. After a few weeks, Lee appeared to respond more favorably to staff and other residents.

What is an Ombudsman?

An Ombudsman is the official who is responsible to ensure that residents are safe and have the rights that are required under The Nursing Home Reform Law of 1987. This law ensures that nursing homes “promote and protect the rights of each resident.” In most states, this law is extended to residents who live in assisted living and small board and care homes.

What does an Ombudsman do?

The primary responsibility of Ombudsman programs is to ensure that residents in long-term care communities—nursing homes, assisted living and smaller board and care homes—have quality of life and care that is needed. An Ombudsman does this by responding and resolving complaints that are received from consumers, usually residents and family members.  An Ombudsman’s advocacy efforts are based on the belief that residents who live in long-term care facilities have the same rights as those who live in the broader community. Ombudsman programs are often referred to as the ‘watch dog’ for long-term care residents.

How do I find an Ombudsman in my area?

To locate your state or local office, contact the National Citizens Coalition for Nursing Home Reform. Or you can search for the Ombudsman program in your area by state or county, for example, Michigan Ombudsman or Los Angeles County Ombudsman. Contact information and responsibilities can also be found on a poster that residential care communities are required to post in their facility.

What kind of things can an Ombudsman help with?

When a resident or a resident’s family have not been able to resolve an issue or concern ‘in house’, a complaint can be filed directly with the Ombudsman program, who will then investigate and attempt to resolve the reported issue. The Ombudsman office can tell you the type of complaints that are handled and what has been filed for facilities in the area. This can be useful information for you as you choose a place for your relative. It can also be helpful to monitor this list once your relative lives in a facility.

The services offered by Ombudsman may vary from state to state. There is no fee for Ombudsman services. Generally speaking, the Ombudsman office can help you:

  • Resolve concerns or issues regarding the quality of care for your relative or other residents
  • Investigate suspected physical, emotional or mental abuse or neglect
  • Investigate possible financial abuse
  • Investigate inadequate staffing or training for the level of care needs of the residents
  • Discuss and resolve a grievance or issue with staff and family members by attending a care planning meeting
  • Provide educational materials to help understand and clarify resident rights as well as policies and procedures for long-term care facilities.

When situations are complex and feelings are running high, an ombudsman offers a way to help sort things out. For families of people with memory loss, this can be a real lifeline.

Beth Spencer and Laurie White

 

9 signs it may be time to move your relative with memory loss

move relative memory losAs people move through the stages of dementia, more dementia care is required. Some people in the early stages of memory loss recognize their need for more assistance with personal care and activities. However, many other people with memory problems don’t, because their insight into their own behavior and needs has been impaired due to brain damage caused by Alzheimer’s disease, small strokes, or similar illnesses.

That means it’s usually the family of the person with memory loss who will recognize the need to move, find a place, and make the final decision to move a relative. Our book Moving a Relative and Other Transitions in Dementia Care can help you think about the issues involved in moving a relative to residential care, and give you practical ideas for making this an easier process.

But how do you know when it’s time to consider a move? Although there are no magic signs to tell you “this is the right time,” care partners often move a relative with memory loss to residential care for one or more of the following reasons:

  1. It is no longer a one-person job and no other family members are available.
  2. The care has become too overwhelming and exhausting, frequently due to incontinence or being up at night.
  3. Your relative with memory loss is no longer safe in her current residence.
  4. You are unable to keep up with both family and work responsibilities.
  5. Emergency and crisis situations for you or your relative have arisen.
  6. You or your relative has become ill or injured.
  7. The current level of services is not enough, is too expensive, or is too difficult to arrange and sustain.
  8. Your relative no longer recognizes her home or family.
  9. Everyone is telling you that it’s time to move your relative.

If you and your family are having one or more of these experiences, it may be time to start investigating other care options, including residential care homes. Even if none of these things is happening in your family, advance planning can give you the widest range of alternatives. You may find that selecting a place gives you peace of mind, even though you may not need it for a long time.

Many kinds of care are available, and your choice may be complicated by the fact that names and licensing categories of residential care vary from state to state. Your Area Agency on Aging (find yours here) can help you sort out what kind of care you are looking for and what it is called in your area: skilled nursing, assisted living, a small group home or some other arrangement. They can also help you clarify whether you need to find a general setting for older adults, or a setting that is specifically designed for people with memory problems or dementia. When you have narrowed the field, you can start contacting residential care homes that you think will meet your family’s needs.

Moving a Relative and Other Transitions in Dementia Care offers a useful worksheet, “Choosing a Residential Care Setting: Things to Look for, Questions to Ask.” Among the criteria it helps you evaluate are the environment, the cost, staffing and activities, medical care, discharge plans and care plans, family programs and support, and end of life care. This tool from California Advocates for Nursing Home Reform can help you evaluate skilled nursing homes.

Moving is not easy! Our book can guide you through the challenging process of visiting prospective care residences, talking to your relative about the move, planning and making the move, coping with after-move reactions…and it will reassure you that yes, you are doing the right thing.  Our goal is to help you make a choice that works for everyone, and helps your relative have a happier, more engaged life than before.

Laurie White and Beth Spencer

Authors, Moving a Relative and Other Transitions in Dementia Care and Coping with Behavior Change in Dementia: A Family Caregiver’s Guide