“Moving my wife into managed care was the hardest decision I have ever made,” a myALZteam member shared. “I lasted as long as I could until her safety and my health started to be affected. I would not sleep for fear of her getting up and trying to leave or falling. I had to take the quickest showers for fear of the same. … Now, I walk out of her place every day, knowing she is in good hands. Deep down, I know I could not have done it any longer.”
If you’re a caregiver for a parent, a spouse, or another family member, the decision to move your loved one to an assisted living facility or other long-term care facility can be deeply emotional. Here’s what you should know to navigate this big decision.
People with Alzheimer’s typically require more care as the years go on. You can choose from different levels of care, depending on the stage of a person’s Alzheimer’s. Some families opt for home care as long as possible, while others pick supportive care options at earlier stages.
For the early stages of Alzheimer’s, a retirement community may offer sufficient support services for individuals who can still do most daily tasks independently. Some communities provide transportation services and other amenities that can make living alone easier.
“Moving my wife into managed care was the hardest decision I have ever made. I lasted as long as I could until her safety and my health started to be affected.”
— A myALZteam member
Some retirement communities offer different levels of care. These types of facilities may be called life plan communities or continuing care retirement communities. This option can be particularly helpful when needs change over time, since you won’t have to relocate the person to a completely new environment.
After retirement communities, assisted living provides the next level of care. Assisted living, which is designed for people who may need help with daily tasks, might also be referred to as supported care, adult living, or board and care facilities. There’s no standard definition of what’s included with assisted living, so it’s essential to do your research to see if the facility is appropriate for people with cognitive decline and memory loss.
Typically, “long-term care” refers to a skilled nursing facility, also called a nursing home or custodial care. These state-licensed facilities offer 24-hour trained staff for support with activities of daily living, personal care, recreation, medication management, toileting, and other services.
For more tailored services, some facilities specifically provide dementia care. These residential care facilities are called Alzheimer’s special care units or memory care units. They may have locks or security to keep residents safe.
You could also check out local group homes, where several people who require care live together. One or more live-in staff members provide round-the-clock caregiving services. Group homes aren’t necessarily licensed or regulated, so you’ll need to do your research to decide if it seems like a good fit.
During the middle stages of Alzheimer’s, individuals are no longer safe without 24-hour supervision. Preparing for the future is critical because the need for care intensifies as the disease progresses. It’s never too early to start visiting facilities to get an idea of what’s available in your location.
Your loved one may need to move into assisted living if:
It’s normal to feel guilty or unsure about this decision. Your loved one’s health care provider can help you see the situation more objectively when weighing your options. Hearing success stories from other members of myALZteam can help you see the benefits of long-term care.
One member wrote, “We moved mom to assisted living last April. She was lethargic and in poor health at home. With consistent medications (she had been haphazardly taking her meds on her own or forgetting to take them when we tried to organize them for her), daily interactions with people, and three meals a day, she’s the picture of physical health. She was barely walking before. Now she can keep up with the best of them!”
“My relationship with my dad has become fun again instead of stressful.”
— A myALZteam member
Another member commented on their mother’s positive experience, saying, “The facility has a hairdresser who comes twice a week and will cut, dry, and set their hair. She actually finally let them, after years of me trying to get a mobile hairdresser out to do it for her. She lets them do things for her that she would never let me or her son do. She appears to be so much happier and healthier as well.”
Long-term care is expensive, and it can be difficult to cover the costs. To secure a spot in a facility like a life plan community, you may need to pay an upfront entry fee along with monthly fees. In group homes or more independent living situations, your loved one will still need to pay for meals and living expenses. The monthly costs of skilled nursing facilities far exceed those of typical housing.
Long-term care insurance makes it easier, but some have this in place only when needed. Many pay for care out of pocket using retirement funds, a pension, money from selling their home, or other savings. In addition, nursing homes usually accept Medicaid, but qualification is based on the person’s financial situation. Several state programs may help with the cost of care. Refer to the National Institute on Aging for a more detailed look at potential options.
Bringing up the topic of long-term care can be extremely difficult, especially because often, the person with Alzheimer’s doesn’t fully understand the situation. In addition, they may be paranoid or angry, agitated, or forgetful, requiring you to have the same conversation repeatedly. Even after entering long-term care, they don’t always remember or accept that they’re not going back home.
Below are some tips for talking about transitioning from home to a long-term care facility:
Moving into long-term care is a big change. You can help your loved one with Alzheimer’s by remaining consistent with their usual routines and providing lots of reassurance.
“Having a routine is key, as is making sure all her basic needs are met,” shared a myALZteam member. “My mom needs to be reminded often she is safe, who she lives with, and that we love her.”
Mentally prepare yourself for a difficult time ahead. If possible, ask community and family members for assistance with moving and emotional support after you leave your loved one in their new environment. The staff at the facility should be well-versed in the challenges of moving day. Share your concerns ahead of time, and discuss how the process will unfold.
Even if the day of moving is hard or the transition takes a while, hold out hope for improvement. “My relationship with my dad has become fun again instead of stressful,” reported a myALZteam member. Trust that you’re doing what’s best for your loved one, even if they don’t realize it.
On myALZteam, the social network for people with Alzheimer’s disease and their loved ones, more than 85,000 members come together to ask questions, give advice, and share their stories with others who understand life with Alzheimer’s.
Have you looked into assisted living facilities? What type of support services are you seeking? Share your thoughts in the comments below, or start a conversation by posting to your Activities page.
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I think that if your thinking in using an extended care facility if your location ver one is still aware of his/her arounds it could benefit him/her to visit and help choose the place.
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