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    Dementia Symptoms & Caregiver Strategies: When Staying At Home Is No Longer An Option: Making The Decision

    There are many reasons why a person may need residential care. Although many families may be able to provide care themselves or to hire 24-hour care when the time comes, this is not possible in all situations. Often families feel tremendous guilt when they realize they can no longer manage without finding an assisted living facility or a nursing home that can care for their loved one.

    Promises that the person you care for will never have to go to a nursing home should be avoided. Instead, reassure the individual that you will make certain he or she will always receive the best possible care. When the time eventually comes that a person with cognitive impairment requires skilled care, and those needs cannot be met with family or through paid homecare services, it is time to find a skilled nursing facility. Skilled Nursing Facilities, also known as nursing homes, provide a setting for those who require more intensive or specialized care such as those suffering with memory difficulties or related cognitive impairment.

    There are a number of factors to consider in choosing residential care. It is a good idea even if think you’ll never need residential care, to familiarize yourself with the options available in your community. Remember that many long-term care residences have long waiting lists. It is better to have a plan and not need it than to urgently need residential care and not know where to turn. Examine all of your available options well ahead of time. Do all of your information gathering early on to be as prepared as possible.

    A room is available: how to make the move to residential care

    How do I tell the person that I love that now is the time? How can I make it easier for us all?

    • Gain Consensus
      Try to involve all concerned family members in making the decision. If the family is not in agreement, it can hinder the person's adjustment to the facility.
    • Keep It Brief, Simple
      When you tell the person you care for about the move, the simple facts work best. "It's not safe for you to live alone anymore; we've found the absolute best place we could for you." Long explanations or trying to convince the individual, only increase their resistance. It is usually best to tell the person only a few days in advance of the move.
    • Acknowledge Feelings
      It is crucial to acknowledge whatever feelings the person expresses. Anger and/or sadness are normal reactions to anticipation of a move and loss of independence. If he or she expresses sadness, perhaps by crying, join them in sorrow; allow your own tears and give the person you care for a hug. You may not need to do anything else.
      If the individual expresses anger, e.g. "I don't want to move; I want to stay in my own home," acknowledge these feelings by saying, "I know you don't want to move" or "I know you wish you could stay in your own home." This will help neutralize the anger, because the individual feels understood. Then add, "We don't have a choice."
      It is difficult to listen to feelings of anger, especially if they seem directed at you. Remember that sadness and anger are normal and healthy responses. The more the person you care for is able to express these feelings, the easier their adjustment will be to the move. Allowing and listening to these feelings may help avoid depression after the move.
    • Reassure
      "We love you and we'll always be here for you."
      "We'll do everything we can to help make it easier."
      Reassurance is what an individual with memory loss seems to need most.
    • Redirect
      The shock and intensity of feelings are great. Both your loved one and you need time and space. Distract the person with food, a change of room, activity, etc.

    Making a smooth transition

    Moving a person with cognitive impairment to a long term-care facility can be a traumatic experience for both the individual and the caregiver. There are several things that can be done to make this transition go more smoothly. In approaching ways to make the transition a more positive experience, look for signs from him or her to determine how much information is helpful. Generally, telling a person several days or weeks ahead of time results in increased trauma and anxiety. Consider sharing information on the person’s upcoming move based on their ability to understand what is happening in order to decrease stress.

    Generally, the transition is easier if a family member or another familiar person spends time with the person at the time of admission. Many care facilities will make arrangements for you to have the first meal together, which can make the individual feel more comfortable.

    There are other steps you can take before and during the transition to help your loved one adjust more easily:

    • Personalize the room before admission. Decorate his or her room with personal items such as pictures, a favorite chair, end tables or a bedspread. Familiar items provide reassurance.
    • Choose the right time for the move. Try to arrange the admission time during the person's "best" time of day. Avoid staff shift changes or mealtimes when facilities tend to be loud and hectic. Mid-morning hours are usually best because generally more staff is present and there is an activity they can attend right away.
    • Try not to show fear or sadness. Do your best not to appear upset. A person suffering cognitive impairment can be very perceptive of the emotions of others around them.
    To prepare yourself for the transition:
    • Plan ahead. Research the care that is available in your community soon after there is a diagnosis. Many long-term care facilities have long waiting lists. It is important to get your name on the waiting list before a crisis occurs. Becoming familiar in advance with the staff will also help you to become more familiar with the facility.
    • Define your new caregiving role. Your role changes (but doesn’t end) when a loved one moves into a care facility. You may want to come in for meals or do an activity together.
    This change can be very difficult, so you will want to stay active and pursue some of your own interests, as well. Keep reminding yourself that continuing to live your life does not at all mean you are abandoning or forgetting the person that you care for.

    Visiting in the nursing home

    There are multiple benefits from nursing home visits.

    The Patient Benefits:

    • "I forget, but I am not forgotten"
    • "My family is here. I am loved, valued, and still important to them."
    • "My daughter will remind me what to do so I won’t be embarrassed."
    • "Only my wife knows how I like my clothes done."
    The Staff Benefits:
    • "Visitors become friends and make our jobs more interesting."
    • "Families offer the personal attention and time that we can't provide."
    • "It's the families that remember to thank us for special attention."
    The Visitor Benefits:
    • "I know the staff and what they can do, and they know my husband deserves the best."
    • "I can keep Mom going and check in on Aunt Bessie at the same time."
    • "I feel closer to my husband now that it's not me fighting with him to bathe."
    • "I promised 'til death do us part and I have not abandoned her."

    Emotional factors in long term care placement

    Love is ordinarily associated with acts of nurturance, generosity, attentiveness, steadfast devotion, and active, heartfelt support. Placing a loved one in an assisted living facility or nursing home requires some degree of separation and estrangement, while the nurturing care is provided by professional staff at your loved one’s new home. Even though you know intellectually that this is your best remaining choice, the emotions of guilt a caregiver often feels can create painful emotions during this time of transition.

    The high costs of out-of-home placement can also produce turmoil and guilt when balancing how to help to cover these expenses while safeguarding your own life savings and financial future. It is a good idea to discuss and evaluate this decision with those who are knowledgeable and supportive (other family members, an Elder Law attorney, members of your support group, the family doctor or social worker).

    Caregivers can assuage their feelings of guilt and better cope with their feelings by understanding that eventual placement when care needs can no longer be met at home is an act of love and genuine caring. Also be aware that sometimes feelings of envy and competition with professional caregivers can emerge when one has been the primary caregiver for a long time.

    Other factors that often make the adjustment process for the family caregiver difficult are the common confusion and fear that their loved one feels as well as the initial resistance to their new environment. However, many of these initial fears and the accompanying resistance are overcome relatively soon simply through their familiarity with their new home, the consistent staff and other residents. In reality, it is common for people to do well or better once they are placed.

    Another thing to keep in mind is that placing a loved one can be a cause for relief for an exhausted caregiver. Feelings of relief can also bring feelings of grief and guilt when the family caregiver confuses these natural feelings with a lack of love or caring. Social pressures can increase the stress when others, due to ignorance, a lack of empathy or just plain cruelty, harshly judge the caregiver who places a loved one in a long-term care home. Support groups can be enormously helpful in counteracting the negative effects of these kinds of pressure.

    In general, spouses have the most difficult and complicated feelings about placing a wife or husband in a new home. This is related to the interdependency of spouses, as well as the deeper level and longer time of the commitment that exists in the spousal relationship than generally exists in the parent/child relationship.

    Garner all of the support that you can at this critical time. When you find yourself listening to that nagging internal voice that is making you feel guilty, recognize it as a negative feeling that is interfering with your well-being and causing you additional pain. Refuse to listen to that negative refrain, and when you catch yourself listening, and feeling guilty, tell yourself “Stop!” and remind yourself that this difficult period of adjustment will be over soon, and it is keeping you from a healthy adjustment that will come, given time. Reach out to friends and family who are supportive of you, and who have empathy. Push yourself a bit to begin to resume some of the activities you once enjoyed, and begin to explore new activities.

    Adapted from “Emotional Factors In Nursing Home Placement”, Gerald Amanda, PhD, Lincoln/Greater Nebraska Chapter Newsletter, October 2009, Alzheimer’s Association

    Cognitive Impairment can have many causes. The patient’s doctor should be consulted to determine a specific diagnosis and treatment options. But whatever the cause, the symptoms are often alike, and the Caregiver Strategies are often similar.

    The information in the resources listed above was compiled by the Ray Dolby Brain Health Center through clinical experience and commonly available published materials. For information on additional Caregiver Strategies, go to: