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respite care can be lifesaving for caregivers

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

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