The time has come when your loved one can no longer live alone. For your family, the solution is to lay out the welcome mat at your family’s home. Transitions like this are difficult enough for healthy adults, but they can be even harder when the symptoms of dementia enter the scene. In the case of relocating a person with dementia, some general guidelines typically work well, but you might want to tailor them to your individual situation since each person with dementia is unique and family dynamics vary.
Q. My mother says she no longer wants to stay in the assisted living facility where she has been living for approximately one year. How do I deal with her desire to move?
A. One of the first steps you should take is to examine your mother’s environment and try to find out the reason behind her discontent. Is she uncomfortable in any way about other residents, the staff or the physical setting? Has she made friends? Does she enjoy the activities? Is she fond of the food? Does she feel like she’s being treated well?
Giving her the opportunity to discuss her concerns and receive feedback from others may lead to feelings of empowerment and release, which is often what a person primarily needs when in distress. If she does raise issues about the facility, you might want to discuss them with the social worker, nurse manager or administrator. If you address your mother’s concerns, and she feels recognized and respected, this may change her mind about moving elsewhere.
In addition, look at the situation from a psychological perspective. When an individual relocates, it is common to undergo an adjustment period that could range from a few months to even longer. Having a diagnosis of dementia can further complicate things, since the change of scenery can bring on or add to confusion and disorientation.
If your loved one is moderately aware of her surroundings, it is quite possible that she feels “shoved around”; this can cause her to experience feelings of abandonment and to respond defensively rather than admit to the underlying pain or anxiety. She could very well be displacing her anger at the facility, when in fact she might be upset at whoever was responsible for her move there.
If her cognitive impairment is more severe, other factors may be causing her desire to leave. If she is frequently stating that she “wants to go home,” it is important to understand that this is a common symptom of the illness and does not necessarily indicate maladjustment or unhappiness. What a person is actually looking for is comfort and safety. Bringing her back to your house or even her own house will not always solve the problem. When Mom says, “I want to get out of here,” it’s best to to validate her concerns and redirect her to more pleasant topics. This can lead Mom to feel safe and secure and even forget about her desire to leave.
To further get to the bottom of this request, you might want to consult with a physician to see if any co-existing conditions, such as depression, are a contributing factor.
Q. My mom has had Alzheimer’s disease for five years and is now in a nursing home. When I visit her, she does not know who I am. Sometimes, she thinks I am her sister. How do I handle these visits?
A. Although the progression of symptoms and specific care needs are different for each person living with Alzheimer’s disease, many families eventually face the difficult transition from home-based care provided by the family to facility-based care. Changing from direct caregiver to visitor and care advocate can stir up many emotions.
Although the nursing home staff may be ideally suited to assist your mother, it is perfectly normal for caregivers in your situation to experience persistent feelings of concern, grief and guilt. You must recognize that your decision to place Mom in such a supportive environment was made with her best interests in mind and stemmed from your loving compassion and sensitivity to her needs.
Your visits to the nursing home remain a vital part of her overall care plan. Your presence sends a powerful message to the professional team in the nursing home and allows you to help educate and support these care providers as they learn how best to assist your mother.
Your visits also are therapeutic for your mom since your one-on-one attention and patient conversations will provide additional social stimulation and emotional comfort. Although your mother may not be clear that you are her daughter, she can probably still recognize that you are someone who is familiar. Her clearest memory of you may be when you were younger and the memory of her sister may be from a time when her sibling was around your current age. Such confusion is common among people with Alzheimer’s disease. This does not take away the pain of witnessing the change in your relationship, but it hopefully does encourage you to hold on to remaining connections.
Making the most out of your visits will require patience and creativity. Since Alzheimer’s disease affects everyone differently, there is no way to tell what your mom is thinking about from one day to the next. Being patient with her desire to “just sit there” combined with a creative sense of how to engage her could lead to a more satisfying visit. Remember, even though the time you are spending with her now may not be characteristic of how you spent your time together in the past, it is still time spent in each other’s presence during which she may feel safe and comfortable.
Your mother may have bad days when she is not aware of your visit. But she may have great days when she looks at you in a rare moment of clarity and refers to you by name. At each visit, you may be presented with opportunities to meet her wherever she is in the moment and to help her to be happy in that place. By continuing to adapt in this way, you are giving her a gift that nobody else can provide.