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

respite care can be lifesaving for caregivers
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How to get your relative to accept help—so you can take a break

respite care can be lifesaving for caregiversCaregivers need breaks. Respite care can happen many different ways. You might get a break by hiring a home care worker. Perhaps other family members can step up and rotate time with your relative. Taking advantage of adult day programs or temporary stays in a residential setting is another possibility.

All of these possibilities rest on getting your relative to agree to new people, routines, and places. Without agreement, you won’t get that break.

It’s not uncommon for people with dementia to refuse help of any kind. The secret to getting someone to accept help is to understand and address common and possible reasons for not accepting help. For example:

“She’s just stubborn.” This common statement usually indicates that the person with dementia is used to being in control of her own life and is still trying to be independent.

“I can take care of myself.” This sounds like denial, but has more to do with changes in the brain that result in the person not understanding things accurately such as how much assistance she needs.

“I don’t need any help.” When people develop cognitive changes, they may feel humiliated. Admitting that one needs help can be a very hard thing to accept for both the person with dementia and their care partners—especially after decades of independent living.

“When somebody helps me, I feel useless.” Feeling useless or worthless can lead to shame and make people very resistant to accepting help.

“I’m saving money for a rainy day.” For older people who have spent their whole lives saving money and being thrifty, the idea of spending money on help, especially when they think they don’t need it, may be very difficult to accept.  The idea of a sliding scale or “charity care” makes them feel uncomfortable.

“I don’t want strangers in my home or knowing my business,” or “I don’t trust anyone to come in my home.” Inviting strangers into one’s home is a big step, especially for people with a strong desire for privacy. Sometimes day programs are a better solution for that reason.

Are you the problem?

Ask yourself, are you the one getting in the way of accepting help? As family members we may have some of the same feelings and hesitations as our relatives with memory loss. Discussing this with a professional can help you sort out your emotional issues and decide how to proceed.

How to get help even when your relative refuses it

Arranging respite care by bringing help into the home for the first time can be very troubling to the person with dementia. She may feel insulted, humiliated or angry or a combination of these feelings. Here are ways to make the process easier:

Look for a familiar person to step in to help—a neighbor, friend, housekeeper or gardener who can become a part-time companion. This can happen gradually and subtly and your relative may not notice the change in role. The person with dementia may not know they are being paid.

Present the change as helpful for you rather than your relative. Bringing someone into the house IS help for you. Respite care gives you some peace of mind and may relieve you of some of your responsibilities. Mary’s mom Karen lived with her and her husband. For many months Karen was fine staying alone while Mary was at work. However, Mary began to get anxious phone calls from her mother. Sometimes when she got home her mother would say, “Where have you been? I’ve been so worried!” Mary took this as a sign that Karen needed someone with her and hired a home care agency a few hours a day.

She told her mother, “Amanda will be coming in a few hours while I’m at work. She’ll be helping me with laundry, cleaning, shopping and cooking, but she’s available to hang out with you if you want company. You don’t have to interact with her though if you don’t want to. She’s coming to help me.” Initially Mary made sure she was at home when Amanda came and made sure that Amanda understood the plan. Karen accepted help on these terms and eventually enjoyed doing things with Amanda. After several months she also allowed Amanda to help her with bathing.

Give her as much control as possible.  When people feel like they are losing control of their lives, they often dig their heels in.  Think about how to help her feel she has some control:

  • Offer choices whenever possible.
  • Involve her in the interviewing and decision of hiring home care.
  • Make it feel like she is helping you. She is!

Beth Spencer and Laurie White

Authors of Moving a Relative and Other Transitions in Dementia Care and Coping with Behavior Changes in Dementia

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

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

red flags that indicate your relative with memory loss shouldn't be aloneWhen should your relative with dementia no longer be left alone?  There are no easy answers, and the signs are not always clear.

Many people with earlier-stage dementia can manage well in their homes with little or no support. As time passes, and dementia affects judgment and decision-making , they will need more support and assistance to keep them safe. Eventually your relative will not be safe alone.

It’s vital to continually assess safety risks.  Consider the following as you make decisions about the safety of your relative. In our experience, these eight red flags can help you determine when your relative may not be safe alone anymore.

Red flag #1: Handling alcohol.  It is imperative to monitor alcohol. People with memory loss may not be able to accurately monitor how much they drink.  Alcohol can also increase the risk of falling. On the other hand, a cocktail or glass of wine with dinner may be a longstanding habit that brings pleasure to your relative.

  •  You may want to ask your relative’s physician about the appropriate amount of alcohol that is safe.

Red flag #2: Managing medications.  As memory and judgment gradually worsen, taking medications accurately can become difficult and eventually impossible for people with dementia.

  • Ask her doctor if her medications can be simplified.  Can some be eliminated? Or changed to once a day? If swallowing pills becomes difficult, are any of the medications available in a different form? A patch or a liquid may be easier.
  • For people with mild dementia, an automated medication dispenser may be effective.
  • Avoid conflict by giving her as much control as possible. Ask questions like,“Would you like your medicine now or after breakfast?”

Red flag #3: Misusing household toxins.  Pay attention to household cleaners that could be used inappropriately. When Mr. Carter washed his hair with mouthwash, his daughter realized that he no longer understood what the various bottles around the house were.

  • If you see your relative becoming mixed up about bottles, cleansers, etc., sort them out and lock up anything toxic, e.g., paint thinner, bleach, counter top cleansers, dishwashing soap. 

Red flag #4: Smoking.  Does your relative smoke or leave burning cigarettes unattended?  This can occur when someone has memory loss or becomes confused.  If the person has a progressive dementia, unsupervised smoking can become a dangerous problem. Working on ways to decrease or end the smoking habit will become important.  It’s not uncommon for people to forget about smoking as their dementia progresses.

  • Nicotine gum or patches sometimes help some people stop craving cigarettes. At some point, locking up matches and lighters will become important. 

Red flag #5: Leaving the stove on. This can become dangerous when people are regularly burning up tea kettles or pans.  However, many of us do this occasionally, so it should be interpreted cautiously.

  • Try purchasing an automatic shut-off electric tea kettle, disabling the stove by removing knobs or turning off circuits, or having an electrician install automatic shut-off timers on stoves and ovens.  Many people with dementia can safely handle a simple microwave for a period of time when stoves have become dangerous.

Red flag #6: Unsafe room or water temperatures. Because skin becomes thinner with age, older adults often feel colder than we do and try to warm up the house by turning the heat up too high or turning the air off.  This can put a person at risk for dehydration, especially if she is not drinking enough liquids.

  • Programming the thermostat – day and night – to a temperature that is comfortable for your relative may prevent her from wanting to adjust the temperature too high. Or consider making the thermostat inaccessible by encasing it in a locked plastic case.
  • Setting the hot water heater to 120 degrees is safer on a person’s fragile skin and can prevent burns. 

Red flag #7: Falling repeatedly. Falling makes safety when left alone a problem. In the early stages of dementia, the person may be able to use a cell phone or an emergency response system to call for help, but as the disease progresses she may not be able to remember how to use it.  Some newer systems have fall detection built in.

  • Make sure that tripping hazards have been removed.
  • Clear pathways of clutter; remove area rugs; increase lighting to help your relative see and negotiate pathways and hallways.  
  • Make sure all stairways have good, solid railings. 
  • Check your relative’s shoes for stability, comfort and non-slip soles. 
  • An occupational therapist or geriatric care manager can help do a home safety evaluation.

Red flag #8: Attempting former hobbies.  Some hobbies – hunting, woodworking, cooking, sewing, mowing the lawn, for example – may involve appliances or devices that are potentially very dangerous. Closely monitoring the person’s ability to handle equipment safely becomes very important.  At the same time, we want the person with dementia to be able to continue to enjoy hobbies as long as possible as this is part of what makes life meaningful.

  • Some families find ways to work on hobbies together for a period of time.  Jane began doing woodworking projects with her father since he no longer seemed to be safely able to operate his power equipment. 
  • Sometimes it becomes important to remove tools or appliances from the person’s home or to keep them under lock and key.
  • Guns and ammunition should be locked up. When judgment is impaired, they become a real hazard.  With supervision, gun enthusiasts may still be able to use them safely for a period of time, but the risks will increase as dementia progresses. 

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