Yesterday was Debbie's 69th birthday.

Debbie has been in Edgewater for one year now. She has adapted well to living there and it continues to be the best life possible that I can provide for her. I still visit every day. Most days I must help her with hygiene issues as she is most comfortable taking help from me. Then before dinner we walk around the building or the campus if the weather is nice. If I have FAIR Plan work that needs to be done, I open my laptop while Debbie is content sitting next to me while I work.

The Edgewater staff members are amazing. I cannot adequately describe the depth of their professionalism, their caring, and their hard work. I don't know how they give so much of themselves to care about the residents as much as they do and then must see each of them die.

Since Debbie has been there, there have been six deaths in total, with two in the last few weeks. We lost Maggie, the life of the party. Maggie told me she was there because she had dementia and then laughed and laughed. She maintained her sense of humor, making her pleasant company. About a month before her passing her awful disease went into high gear and forced her into skilled care. Debbie and I would visit her there and by this time she seldom opened her eyes. But when I held her hand and talked to her, she would occasionally squeeze my hand to let me know that she was still there. Cindy passed last weekend. She always had a smile for me and occasionally a wink to let me know she was still there. Her courage to participate in activities while her body was frail and failing was inspiring. I miss them both.

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.