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.

If the weather's bad, we stay there, and I'll read to her out of a newspaper or a book. I must break the cookie up and hand it to her as she doesn't know how to pick it up on her own. It is the same thing with ice cream. If it's nice out, we go out to the ponds at Edgewater and sit by a fire pit and just enjoy the waterfalls and the landscape. Occasionally, we go for a walk around the campus. It's a very serene and pretty campus. I always hold Debbie’s hand to give her the confidence that she is not going to get lost, and it is very calming for her.

Then we head back upstairs to make a final check that everything is okay in her room before going to the dining room. She has a regular seat for routine, and I leave as the food is being served. I leave knowing that Debbie is in good hands with the caring staff at Edgewater and that she is covered by your thoughts and prayers.

One of the takeaways that I've learned from going through this experience was the value of some planning that Debbie and I did years ago. We set up a living trust along with our wills and power of attorney for medical and financial decisions. Those documents were invaluable as we went into this journey. I encourage all of you reading this to get this done if you have not already done so. If you have these documents, congratulations on getting it done, but check that your documents are up to date and that you know where they are located.

In the meantime, I am adjusting to solitary life and I kind of laugh as I write that. I've had so many people reach out to me and I'm still working full time, more than full time, with the current challenges in the insurance industry. There is a lot on my plate and that is good for me to be occupied. Occasionally, at night I just kind of wander around the house but it's getting better.

So, with that, I'll sign off for now and promise to keep you updated on Debbie’s journey. Just remember none of us are here forever and never leave any kind thought unspoken. Let people know, as there can never be too much kindness in the world.

Onward and Upward, Bob

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

Debbie's Move to Edgewater

I want to let you know that Debbie is entering the later stages of her illness as those around her can notice daily declines. Debbie’s needs have progressed to the point where she was moved into long-term memory at Wesley Life Edgewater in West Des Moines last week.

This has been a tough decision, and I am a mix of sadness because I miss her being at our home but relieved knowing that she’ll be getting the care she needs. Edgewater is well-equipped to manage her symptoms and provide her with the best possible quality of life. She is already responding favorably to her new surroundings.

Soon I will post how to visit or where to send her cards and photos.

Onward and Upward! Bob

Debbie’s Last Christmas

 
This was likely Debbie’s last Christmas where she will know it was Christmas, so we maintained our traditions. She had some good moments but was stressful for her, nonetheless.

She would see the Christmas tree and the packages under the tree and then get anxious about the need to buy presents. I would reassure her that it was done, and she would relax. But the information would not make it into her long-term memory.

A few minutes later she would panic and ask again. This is pretty much how every day is for her now, a lot of anxiety and a little slippage every day.

Our goal is to maintain a daily routine as that is calming for her. We appreciate your thoughts and prayers as we continue the long goodbye.

Onward and Upward! Bob