I often meet with families who are struggling with the issue of a parent who has dementia. I know this feeling so well, as I spent ten years helping my dad care for my mother. It was hard for me, living one thousand miles away, to recognize how she was deteriorating and the strain it put on dad. And he, as most caregivers do, covered up her limitations… even to me. Early on, mom would say “I feel like I’m going into a dark hole and can’t get out.” She knew her diagnosis but, with time, lost sight of the cause of her problems. Dad felt that it was his duty to care for her. He told me, “Your mother was totally dedicated to making the best home for you girls and me and now it’s my turn to do this for her.” Luckily, I had a friend who was volunteered with the Alzhiemer’s Association, and she helped me learn about options. With time, this helped me to guide my parents to select a continuum of care. Through the respite program there, Dad got the breaks in caring for my mom that he so desperately needed, allowing him to still play golf with his buddies keeping him happy and well. And eventually, mom moved into a memory care assisted living right on the same campus so they each got the best care and support for this hard journey.
What can memory care assisted living provide? It decreases anxiety levels and increases the quality of life both for the person with dementia and for the caregivers. Dad had thought it was good for mom to go everywhere with him, but this was very confusing for her. Once she was in the memory care neighborhood with a set routine, she could manage her anxiety level decreased significantly. She was safe in the secure environment, so we did not worry about wondering, but she was still able to go outside to enjoy the birds and warm sunlight.
Sadly, mom was in assisted living a dozen years ago, so bingo and other group games were the center of activities. Today, the best memory care programs have person centered care focused on individual abilities and interests. Now she would be enjoying flower arranging, which was a special talent of hers, and she would be surrounded by albums of their travels so the caregivers could easily reminisce with her. I recently watched Mary Mitchell, a well-known gerontologist and volunteer, lead a reminiscences group. She just put a bean pot on the table and asked the participants whether they used molasses or brown sugar in their baked beans. That started an amazing sharing of baked bean stories. The suppers in North Canton seemed to be the favorite. An hour and a half later, they were still going. Oh, how mom would have lit up telling stories of the baked bean suppers in Ayers Cliff where they always spent the summer and how each summer a different local lady seemed to take the mantle of baking beans and the best soft rolls and selling them from her farm.
Now compare these experiences to a senior who is staying home alone in his home. I hear families say that keeping dad in his house is the best solution. This is often not true. He may have a caregiver who meets his basic care needs, but he is not with peers enjoying shared experiences. And his world becomes more and more limited. He stops being independent as much as he is able since the caregiver waits on him day and night. He generally sits in a favorite chair for most of the day, not exercising his mind or his body. In addition to improving quality of life, it is generally much less expensive to have a loved one in assisted living rather than pay for a home and the costs of 24 hour care. The toll on the family to manage all the care and caregivers is another burden that is eliminated when a loved one moves to assisted living.
Couples living together experience other problems when the care becomes all consuming. My dad could not leave mom alone so he gave up his daily long walks and staying as fit as he had been. A friend’s father struggled with the daily chores of cooking and laundry. They were just not managing in their home any longer.
When is the right time to move a loved one to a memory care assisted living? This is a very personal decision. First and foremost, it is a matter of safety. Honestly, is your parent safe at home? Even with a caregiver? Is your parent truly having the best quality of life that is possible? Memory care assisted living neighborhoods have a team of staff who are specialists in Alzheimer and the many other types of dementia. They know how to create a person-centered care environment. They know the importance of physical activity and how to safely get folks moving every day. An interesting fact is that exercise is even more important for someone with dementia. One can play many games to increase brain function, but they aren’t going to help if the blood is not pumping to the brain to help keep the neuroplasticity. Ultimately, when to choose a memory care assisted living is a personal choice that depends upon the family resources, time, and ability to meet the changing needs of their loved one.
Letting go of caregiving responsibility is a tough decision. It may sound easy, but as my dad said, is was his duty. Many family members think, “No one can care for my parent the way I do. I can’t leave them when they are so sick. My loved one needs me. They will fall apart without me.” But I can tell you from personal experience that the honest truth was that dad was not trained as a caregiver or a health professional. He did not have the skills to safely give mom the personal care help she needed daily. He did not have the dementia training to help cue her and redirect her to reduce her anxiety. Another key as to when to make the decision to move a loved one is the need for sleep. Often those with dementia suffer from sundowning and are up much of the night. The caregiver becomes sleep deprived and that makes it difficult to stay patient and understanding when caring for the person with dementia.
Good memory care assisted living communities welcome family engagement in the lives of the residents, educational seminars and support groups. Many family members like my dad become volunteers. This gives them opportunities to interact in a meaningful and informed way and be part of the fabric of their loved one’s new home. This gave him even more meaning to his life as he helped mom and others. At the same time he did not feel guilty about the opportunity to have a respite from caregiving… eating with his own peers, playing golf and having his daily long walks, and getting a good night’s sleep in his apartment. In some communities, the couple may move together to the campus so the person needing specialized memory care receives it and the caregiver is close by, but free to live independently as well.
Once my parents moved to a community with services, they got the professional care she needed, and support and encouragement he needed. I’m sure it extended both of their lives. I know the quality of their lives was better.