Tag Archive for: moving a loved one with dementia

Moving a relative with dementia from out of state

Moving a relative with dementia from out of state is hard.

So many questions are involved in the decision. Can she no longer manage alone? Is it the right thing to do? Is it the right time? Am I breaking a promise to care for my relative at home? Will she be angry at me, feel sad, or be more confused after the move? Could moving from out of state cause a faster decline?

Our book Moving a Relative and Other Transitions in Dementia Care can help you work through these questions. It can help you assess your relative’s level of care, choose an appropriate environment, and grapple with the many details of moving a person from a familiar community and longtime medical and social support to an altogether new place.

Knowing what to do before, during, and after the move may make the process easier for you.

Before the move:

  • Know the housing options and level of care your relative needs.
  • Obtain all medical records from all your relative’s doctors, including dental, optical, audiology and hospital records.
  • Look for a primary care doctor, neurologist or other needed specialists.
  • Refill all medications and get a list of current meds.
  • Change address for national pharmacies or online pharmacies.
  • Leave old bank accounts open until a new one has been established, to receive Social Security and other deposits.
  • Open a new account and change address on checks.
  • Notify Social Security and any investment accounts.
  • Talk to Medicare about possible impacts on the Medicare Supplement plan.
  • Plan how to tell your relative about the move. 24 to 48 hours’ notice may give both of you time to be emotionally and psychologically prepared. Keep it simple and be consistent. Too many details can be confusing. Be sure to acknowledge his or her feelings. “I know this is hard for you. This is hard for me, too.” (Find a sample script for a family meeting with a relative on page 126 of Moving a Relative and Other Transitions in Dementia Care.)
  • Plan the journey. Can your relative tolerate a long car drive or flight? Will a sedative be needed? Bathroom breaks? a motel?

Making the move:

  • Watch for a change in your relative’s mood and behavior. Sometimes a person with dementia can become more confused, angry or agitated when a move is imminent.
  • If you are flying, choose a direct route with no layovers, and seats that are near the bathroom. Consider wheelchair assistance (even if your relative is relatively mobile) and have someone meet you at the airport.

Getting settled after the move:

  • Get a new state ID card, which in some states may require original birth certificates.
  • Learn about Medicaid regulations in the new state, if you think your relative may eventually need to be on Medicaid. If your relative was on Medicaid in the old state, you will need to close out coverage there before applying in the new state.
  • Review legal paperwork to see if changes are needed to powers of attorney for health care or finances.
  • Schedule appointments with new physicians to establish baseline care.
  • Some people do not react strongly to their new surroundings. When a new resident feels secure with the people and the place—which may be your home—she or he may be more accepting than you expect.

While moving a relative from out of state is daunting, most people adjust given time and a secure, nurturing environment.  If you can, give yourself time for careful planning.

Laurie White and Beth Spencer, Dementia Care Books

An expanded version of this topic is available in our book, Moving and Other Transitions in Dementia Care

Seven more red flags: when your relative with dementia shouldn’t be alone

how to know when your relative with memory loss should be left alone

When should your relative with dementia no longer be left alone?  There are no easy answers, and the signs are not always clear. Here are seven more red flags that can help you determine when your relative may not be safe alone anymore. (We offered eight red flags in another blog post.) As you make decisions about the safety of your relative, consider these seven additional flags.

Red flag #8: Getting lost. Does your relative leave the house alone?  Go for walks?  The Alzheimer’s Association estimates that about 60% of people with Alzheimer’s disease will “wander” at some point in the illness (which really means that they get lost, often in a familiar place). If your relative is going out alone, it would be good to look at safeguards.

Individuals who are afraid to leave the house may be at risk in a fire or another emergency.  If your relative talks a lot about going home or leaving, she may be at risk for getting lost even if she has not walked out to date.

  • The Alzheimer’s Association and MedicAlert co-sponsor the Safe Return program, a 24-hour emergency response system that operates nationwide.
  • Consider a GPS-based tracking system. The Alzheimer’s Association sponsors one called Comfort Zone in some locales. Project Lifesaver is an international GPS-based tracking system that may be active in your area. 

Red flag #9: Leaving the house at night.  Some people in the later stages of dementia get days and nights mixed up and may be up and dressed in the middle of the night.  If this is becoming a problem or if your relative has ever left the house at night, it is important to think about supervision at night. If she is alone nights and has left the house, she is probably not safe alone at night.

  •  If other people are in the house, try securing the doors with an alarm system, a lock high on the door, or a simple door-securing device designed for children—all available online and in stores.

Red flag #10: Opening the door to strangers.  What does your relative do if someone rings the doorbell?  Does she open the door to strangers?  As people with dementia gradually lose the ability to make safe/good decisions and judgments, the potential for danger increases if she is likely invite a stranger in or give the person money.

  • For some people, a large sign on the inside of the door that says “Do not open the door to anyone,” solves this problem for awhile. And a sign on the front of the house that says “No solicitations” may decrease the number of sales people knocking on the door.

Red flag #11: Giving money away.  Mail, phone, and computer solicitations can be dangerous for individuals with poor judgment.  Individuals with dementia are at high risk for financial exploitation from strangers or relatives.  Sometimes it is a matter of making donations, either giving small amounts repeatedly or giving large amounts. Repeated credit card purchases can lead to financial difficulties.  Others become addicted to internet gambling.

  • Consider limiting access to money or leaving a small amount in a checking account for the person to use.
  • If mail is the issue, one approach is to forward mail to another address or get a PO box and have someone else in the family monitor it.
  • Phones can be unlisted, although solicitation calls may still get through. Sometimes just turning the ringer off is enough to keep the person from answering, although this may be a problem if family wants to call or your relative is waiting for a call.
  • Computers may be more difficult to monitor if your relative is still able to use one. Some families have limited internet access or installed child safety programs. Others monitor the computer history daily to make sure that their relative is accessing safe sites and not gambling or giving away money. Watch for and delete suspicious emails containing attachments that infect the computer when opened. Often they appear to come from friends and relatives.

Red flag #12: Responding to emergencies.  Would your relative know what to do in an emergency, say, a fire in the house?  This is an important question to ask.  However, a person who can answer correctly may not actually be able to do what’s needed.  Ask her to demonstrate calling 911, leaving the house and going to the neighbor’s, using the fire extinguisher, etc.  If she is not able to respond appropriately in an emergency, how much risk are you as a family willing to tolerate?

  • Installing a phone with important numbers programmed in and photos or large words on the buttons may help your relative use the phone independently for longer. 
  • Post large font lists of important phone numbers near every phone or in key locations.

Red flag #13: Calling frequently or exhibiting a lot of anxiety.   This is often a sign that your relative is feeling anxious and is looking for reassurance.  And why not? It’s frightening to forget important pieces of information that helps you understand what you are supposed to be doing!  Anxiety and a need for reassurance  may lead to safety risks such as leaving the house or inviting strangers in.

  • This may be a point at which you need to think about increased supervision or a companion.

It’s hard to strike the right balance between being over-protective and ignoring signs that your relative is at increased risk.  And, of course, family members don’t always agree about how much risk is tolerable.  It can be helpful for families to talk occasionally together and assess how their relative is doing with each of these potential safety issues.

If you see lots of red flags, it may be time to consider relocating your relative with memory loss to residential care. Our book  Moving a Relative and Other Transitions in Dementia Care can walk you through the process.

 

Beth Spencer and Laurie White

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 

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