Entering the “MEMORY” World
# 2 Entering the “MEMORY” World
Then Beverly moved into a “memory” facility (aka a dementia facility). Our moving in is a topic for another time, as is the general discussion of issues many of us must face: when, which arrangement, and where.
She seemed to be content with her new surroundings, although she did not talk about it much with me. She did later express some unhappiness to others, including our children. This provides a quick view of some highlights with much more in later entries. She had not been happy at home either, a state to which I had become somewhat accustomed. She has been happier in the facility than she was at home.
Shortly after arriving at the facility, she made a clever escape. Our daughter and I went to visit early in the day. We could not find her, so the staff did a thorough search to no avail. Then they called up the surveillance video. And here she was pushing two chairs against the fence, stepping up on the chairs and vaulting gently over the fence without harming herself. Thankfully a helpful person in the neighborhood found her soon enough. This is a near panic situation in a facility because the outcome could be very serious. On another occasion, she kicked a locked glass door very forcefully, enough for damage which I had seen right after it happened. Months later someone told me it was her and I wondered how she didn’t break a toe from such a kick. But she did not escape that time.
For her, a very positive aspects of being in here has been that there are many people she can interact with. Staff members were and are consistently engaged with her; their involvement was aided by her remarkable social charisma and skills. She is living proof that clarity of verbalizations is not as critical to engaging others as it might seem. Her speech was early somewhat “muddled” and has become increasingly so. Yet one nurse told me (months after the move in) that “she has greater social skills than anyone I know.” The other residents soon learned that she was practicing her nursing skills by being supportive and helpful for them, even affectionate with them. This contact with people is very positive for her. The facility became “home” within a few months. A caregiver whose loved one has entered a facility should know that their loved one has entered a new life, society, and culture that we caregivers are allowed “within” in a limited way. This is now their world and we are somewhat interlopers.
Fortunately, we soon met others who were new to the facility and we jointly formed a little community within the facility. Being our own little community had many positive results. Even though we were from different political, religious, and social backgrounds we became a tight knit, supportive, and happy group. I feel very grateful to have stumbled into others on the journey. And even though death has changed the size of our group, we continue to be central support for each other, residents and caregivers. The two wives who are residents established a strong bond. One day early in our time there they had fresh manicures, which were the same color. I jokingly called them sisters which was meaningful to them.
Our group soon started hosting our own parties too, which were “celebrations.” These were and are wonderful opportunities for us to gather family and friends. The facility accommodates us by setting up a room with decorated tables and soft drinks; we bring in food for all. There are the usual holidays, such as Christmas, Valentine’s Day, Independence Day and we find other occasions such as a “Spring Fling” and birthdays and anniversaries, highlighting loved ones and caregivers. There is always food, music and singing and a great crowd of people, including lots of children. And the main activity is just being with each other, with informal circulating around among all of those folks and kids. These continue to be important to us.
There were also trips out for Beverly and me, for a meal, attending church, or music, often to get together with relatives or friends. She comes to life in the parties and outings. Just thinking about how she “works the room” whenever there is a crowd makes me smile. It is moments like this when we caregivers are deceived into feeling like our loved one is “normal” again. She “came out” of a shell and interacted with others just like the person I once knew. This brings a sense of hope to this ambiguously developing disease process, and we all enjoy a reprieve.
Then there are the restaurant outings. At first, we caregivers are embarrassed by the awkward, clumsy and sometimes inappropriate behavior our loved ones demonstrate, like eating with their fingers—even ice cream. There is usually a mess created on the table and food on the floor. Soon enough we have learned to accept such behaviors. And, in restaurant outings, she often just walks up to a nearby table of strangers talks to them. Sometimes she also gently touches a stranger; and a few times she touched someone on the shoulder from behind without warning. Nonetheless I have not seen a negative response to this. People can see her genuine positivity and that makes everyone’s lives better.
Planned activities in the facility have been central to her life. Music is especially significant for her. She joins into whatever music a performer is providing, singing along, often with effective improvised harmonies. Every musician who performs in this facility knows who see is on the first visit as she sings and does sophisticated drumming. Also, she has enjoyed trips outside in the company bus, which takes brief sightseeing events. Such outings are significant to many of the residents
Some residents are constantly at the front desk indicating that they want to go home now. It can be sad, but staff have great skills at “redirecting” about this and other issues. One resident received an elaborate tale about what this fancy resort. He was told that here is a swimming pool, an exercise room, his own private room with a bathroom, room service, and concierge service; it was all somewhat true. When the resident wanted to know how he could afford this, he was told that it was all paid for.
Medical issues are significant in this setting. There are, of course, the various “pills” that manage the symptoms of the disease such as sadness or anger, as well as one or two medications that offer a chance of a slight impact on the disease progress. But there is no cure! Still medicines have side effects: tiredness, dampening of emotions (strongly so and essential for the angry/violent ones), and certainly risk for falls. More on this later.
And medical crises arise for her and other residents. Certainly, a primary one for most residents is falls and other accidents. Beverly is very mobile and generally stable, but has had some falls, including a serious one. More about that later when we discuss the kind of medical issues that arise with virtually any dementia person.
Where have I been through all of this? I have been proactive, dedicated, and yet lucky in many ways. Still everyone’s path is so different because of this disease and how it is managed. But I can recommend some principles that should be generally helpful. While these principles are more directed at care in a facility, they still apply to wherever you are.
1. Select your facility, home support company, or paid caretaker with great attention. The stated philosophy and procedures may or may not be carried out. Observation is mandatory.
2. Monitor every aspect of your loved one’s situation and make it clear to others that you are doing so.
3. Know and be friendly with all of those who work with your loved one. In a facility the cleaning folks can help her/him. The caretakers (Nurse’s aides/CNA’s) will be more directly involved than anyone.
4. Give special attention to medical issues and prepare to make critical decisions in that area.
5. Your loved one is not the same person you knew before, but they still have emotional needs, so love and kindness matter.
6. And your loved one understands more than they seem to, especially social and emotional (nonverbal) communication.
7. And, for your own sake, have others who support and help you with this care; consider those who truly help your “psychological family.”
8. Finally, enhance your life independent of your loved one, whether through new (and old) friends, social groups, church, taking classes, and/or a hobby.
Love has kept me in a pattern that works for me, but not for all. From the beginning until now: Each day I go to the facility for lunch and spend about two hours with her. Every late afternoon I return for dinner and bedtime, lying down with her until she is asleep. Love!