Calm and Happy

Here is an update on where we are on our journey. Debbie is still at Edgewater in the memory care unit called Beacon Springs. 

The last few months have been a time of loss. A longtime friend from my Preferred Risk days died, and another is now in memory care. Recently, several of the residents in Beacon Springs have died, two have moved to long-term care, and one is in the hospital. The losses continue with Debbie as she continues to lose more cognitive ability. She is starting to hallucinate. She is hearing voices and then responding to them. Her words make no sense, but then I only hear half of the conversation.

The good news is that Debbie is calm and generally happy because she feels safe. She is always clean, well-fed, and tended to by wonderful people who care about her. To the best of her ability, Debbie participates in group activities. She has many friends and family who visit. So, from that perspective, she's luckier than most people.

Surviving the Holidays

Debbie's slow cognitive decline continues to be noticeable to us but not to her. Because she isn't aware of it she is calmer and less anxious.

The holidays are over, and routine has returned to Edgewater and the memory care area called Beacon Springs. The last eight weeks have been fraught with challenges for the residents and staff.

First, Beacon Springs is now full, as several new residents moved in. It is a time of adjustment for the new arrivals, their families, and the current residents. Something as simple as changing the seating arrangements at meals and the added activity in the common area can be stressful for some residents.

Second, there were many visitors, some travelling from a distance to see their loved ones. A few of the residents were taken out to dinners, family gatherings, and church services. What follows is often confusion and anxiety for the residents. Perhaps it is just the change of routine, a glimpse of their past life, or just getting tired that causes it.

Third, the regular weekday staff, of course, want to spend time with their family during the holidays. So, during the holidays many more days become a “weekend”, i.e., a day without the usual daily events and surrounded by more familiar faces.

We struggled as a family to get the right balance for Debbie between us visiting but not disrupting her new life. We have settled into a routine where I visit every day around 3:30 pm and then leave when she is served dinner and after I cut her food. That gives me time to make sure she is clean and if not help her change. Then we walk or watch TV together. It is a comfortable routine for both Debbie and me. Debbie gets one or two visits each week from family or friends, often having lunch or dinner at the Edgewater Bistro. We have never taken Debbie off the Edgewater campus, and she has never requested to leave. It is a happy place for her, and I am grateful for that.

Debbie's Community

Debbie was sitting with Rebecca, the activities director, when I came in for a visit yesterday. She told Rebecca, “There’s Bob!” I am grateful that she still knows my name at times while accepting that it is becoming less frequent. Debbie continues to be well adjusted to life at Edgewater and is living her best possible life there. She is calmer. She is less aware of what she has lost and makes the most of what she has left.

Because of my daily visits I am acutely aware of the daily routines of the residents and the staff. It is a joy being with the other residents in memory care too– each one has story and in a small way I have become a part of their world. I have connected with them, and I know I have made their final journey little bit better. It is sad when they pass, and two have passed in October.  No one recovers from dementia.

The Edgewater staff work tirelessly to meet the unique needs of each resident. The residents require a lot of patience, and some days are better than others. But patience, kindness, hugs, and routine do create a community. It is heartwarming to see the residents look out for each other and enjoy each other’s presence. 

There is Carol who a few months ago complained loudly about everything but is calmer now. When Debbie has visitors, we are sure to introduce them to Carol, and she lights up like she has been selected to meet the royal family. Judy and Cindy always sit near each other and look out for each other. Judy always has a smile and wants to share a thought or two like it’s a secret. Cindy will always make eye contact and smile while she waves hello. Maggie, a retired teacher, has a great sense of humor. Pat is often in pain when she moves but has a sense of dignity that is evident to all. Sally’s husband comes in every day like me to help get them settled at the table for meals. Jerry does the same for his wife. 

There are some that have few visitors but do get a lot of attention from the staff. It’s a community and I am grateful that we found it for Debbie.

Onward and Upward! Bob

Debbie's “Long Goodbye” Continues

Debbie’s “long goodbye” continues unabated. We, who are close to her and see her often, see endless evidence of her slipping away from us. The good news is she still accepts without complaint her current living status. Never once has she asked to go home. Debbie sees her room as her “apartment” and she is proud to show it off to visitors. We filled the room with many of Debbie’s favorite items to make it familiar to her. So far this is working great.

I visit every day and will do so as it is beneficial to Debbie. I have determined that the best time to visit is one to two hours before dinner. Then I transition out as she is seated for dinner. When I get there, she usually needs help with hygiene, so I help her freshen up and change clothes. She requires multiple prompts for dressing and eating but fortunately she is mostly compliant and does not get frustrated when she does not understand what is being said. A typical visit includes grabbing a couple of cookies, sometimes ice cream too, and going downstairs to the front entrance of Edgewater where there is a sitting area.

Debbie's New Normal

It has been over six weeks since Debbie moved into the memory care section at Wesley’s Edgewater campus in West Des Moines. I am happy to report that the move and transition were better than we hoped for as she was immediately calmer and happier in this more structured environment. She has a nice room; it is quite large, and we call it her apartment. The facilities and the staff at Edgewater are fantastic.

Debbie continues to decline cognitively, a little bit each day. She cannot read, follow conversations, or express more than her basic thoughts and needs. When asked a question she freezes up as she senses that it is a question, perhaps from the rising inflection at the end of the question. We try not to ask her questions, but it is hard not to because it is polite to ask people what they might need and give them choices.

Very little new information makes it into Debbie’s long-term memory. When her sister Ronna visits in the morning and then I visit later in the day, Debbie has no memory of Ronna’s visit. Debbie no longer knows our names.

I see Debbie every day and we go for a walk on the Edgewater campus. Last night I had a wonderful experience with her. I asked Debbie if she knew my name, and she smiled and said confidently "Yes, you're You." I smiled and agreed, and then we went for a nice walk. I am very grateful to be her “You.”

The harder transition has been for me. I was so involved in caring for Debbie every day, managing her medication, cooking meals, cleaning, laundry, helping her with hygiene, and dressing. Now my home is silent. I have never lived alone, and so far, I find it to be awful. So, I am staying busy with friends and family and working on a large project at work to stay busy.

Onward and Upward! Bob