Angie and Fred's Story
As Angie looked back, it was over the course of the past few years she noticed changes in Fred. Her reserved, organized husband of 55 years started losing items like keys, misplacing mail, paying bills late. Then it was the loss of words and forgetting names of people Fred knew.
Fred had become argumentative, and Angie didn’t know why. Fred usually drove the car when they went out, but that was causing anxiety for Angie because Fred was getting lost quite a bit. He wouldn’t let Angie drive and wasn’t always agreeable to listening to Angie for giving directions. It upset Angie when Fred insisted on going out alone to run an errand. It also surprised her to learn that Fred could no longer use the car’s navigation system. Fred said it was broken. Angie was very concerned that one day Fred would not find his way back home.
Signs something was wrong
As time went on, Fred’s sleep habits had changed. Normally a good sleeper, Fred was now awake most of the night. He was active in the house and liked to sort through paperwork. At first, Angie thought little of it because Fred was such an organizer, but it became a nightly routine and he would be awake until 2:00 or 3:00 in the morning. He would rummage and sort through files for hours. Fred would now sleep in until about 11:00 every morning. Usually, Fred was up by 7:00, so this was a big change. Angie needed to find the warranty information for a broken appliance and went to the file cabinet where they kept the household files. As Angie was looking through the files, she realized that Fred had mixed up every paper and every file. It was a mess. Angie was now very concerned about what Fred might have thrown away.
A dementia diagnosis
Realizing that something was very wrong with Fred, Angie made an appointment for Fred to see his physician, Dr. Dylan. Dr. Dylan who had been Fred’s doctor for many years, ordered a series of bloodwork and tests to see if Fred’s internal systems were functioning properly. They were, so Dr. Dylan ordered some neurological testing. It was determined after these tests that Fred had dementia.
So many things that have happened in the past few years now made so much more sense. As overwhelming as it was to receive this news, there was relief in knowing. Angie suspected, but it was easier at the time to not even think about it. Now, faced with this diagnosis, Angie knew she needed to get affairs in order.
Fred's increasing care needs
Another six months had gone by since the diagnosis, and Fred and Angie continued to live their lives. It was hard on Angie as Fred went through more changes. Personal hygiene was a constant struggle, as Fred didn’t want to shower. He was obstinate about brushing his teeth and combing his hair. Fred didn’t see the point in changing clothes, but Angie was persistent. Fred was in a pretty good mood for most of the day. This was his normal demeanor, but in the early evenings, Fred would get agitated. It was a restlessness that once it started; it was difficult to calm Fred down. He wanted to go out, sometimes he wanted to pace the floor, or he was fixated on a past event or asked the same questions repeatedly. Fred was often argumentative. This lasted a few hours and happened most days of the week.
Caregiving was taking a toll on Angie. They no longer had much of a social life, as Fred’s ability to converse in a manner that made sense was diminishing. Minimizing their social contact actually had happened over a year and a half earlier when Fred realized conversations were becoming more difficult as he was forgetting words and names. He was aware he needed more help and some of his meals seemed to always end up on the front of his shirt. It made him feel uncomfortable and created awkward moments for him. It was easier to stay home.
Angie was mostly homebound as Fred was not safe left at home, even for a short time, so she could run a few errands. Angie and Fred’s two children helped when they could, but their son, Tommy, lived out of state and came in just a few times a year. Their daughter, Carol, lived about 45 minutes away and was busy working and raising three children who were all in elementary school. The children were busy with after-school activities and homework during the week. They filled their weekend with sports and dance classes.
Assistance from family
Once every other week, Carol would come by for a few hours on the weekend. She could do some grocery shopping for her parents and run some errands. Sometimes Carol would stay with Fred while Angie ran out. Angie was so happy to have the company. When the grandchildren came, they always delighted Fred and Angie to see them, but Angie noticed Fred would become irritable with the children after about an hour and a half of being together. Just like kids are, they were young, active and louder than Fred was used to. Angie was always on edge with Fred and the grandchildren together because she knew how much Fred loved them and didn’t want him to be yelling at them all the time. She also knew that Fred, before dementia, would have been completely immersed in playing with his grandchildren, noise and all. It would not have bothered him. It would have been joyful noise to his ears. This made her sad.
Angie, a patient and loving wife and caregiver to her husband, was having a very hard time now. The physical exhaustion of caring for Fred was constant. Angie slept little because Fred was still up at night. She could rest when he did, but it felt like she had to sleep with one eye open to make sure he was alright and stayed asleep. It was hard to maintain the house. Cooking, cleaning, laundry, paying the bills, taking care of the exterior of the home and yard were a lot for her to manage. That was easy though, compared to the full-time caregiving demands of making sure she was attending to every detail of Fred’s care. Fred was at a point in his dementia where he needed reminders for everything. Fred needed direction for bathing, dressing, grooming, medication management, eating, drinking and help in the restroom.
The physical demands on Angie were hard. Her joints ached, her back was sore and her feet hurt most days. Each day and night seemed endless, especially with the lack of sleep. The emotional toll on Angie was worse. She loved Fred and missed her husband. It was with great sadness that she watched him slip farther into dementia, and the life they used to have seemed like such a long time ago. It was hard for her to process. Angie didn’t have a support group she could go to and be with other people who are traveling the same road she and Fred are on. It was very lonely and frightening. Angie didn’t share what she was feeling with her children because Angie didn’t want her children to worry. She wanted to be strong for her and Fred. They always relied on each other and got through everything together.
Reaching the breaking point
Angie knew she needed some help. She hired a cleaning service that came every two weeks. This helped. It came at a time where Fred’s needs were changing again and more of Angie’s time needed to be for Fred’s care. This lasted a few months, but there were a few incidents that Angie realized she could no longer care for Fred at home. Fred had some bouts of incontinence, but Angie could manage that. One day, Fred had gotten up from sleeping and he needed to use the restroom. Angie was so exhausted that she never heard Fred get up. Fred, disoriented from sleeping and having no guidance from Angie, could not find his way to the bathroom and Angie woke up to Fred relieving himself in a basket of clean laundry. Soon after, it had happened again in a potted plant. It was a breaking point for Angie. She realized that her sleep deprivation was affecting her ability to know what Fred was doing at all times, and that scared her. Angie knew she needed more help and, as much as she hated to admit it, she could no longer care for Fred by herself.
Finding a community
Angie researched some senior communities that she saw online. One community was a few miles from the house and she liked that. Another community was about 20 minutes away, closer to her daughter, Carol. Angie liked that, too. Angie reached out to both communities and learned much just from the phone calls. The community closest to the house invited Angie and Fred to come and visit. They specialized solely in memory care. Angie set the appointment.
The community that was farther away offered to come and meet Angie and Fred and bring some information for Angie to review. Before they left, an invitation to lunch was extended and the community would come and pick them up. Angie arranged the date and time for the visit.
The visit to the community closest to them was very nice. The community was all memory care. Residents were all in different stages of memory decline and the staff focused on activities that each resident could take part in. Ruth liked the calm setting and the location of the house. The community had about 40 residents and there was a friendly interaction between the staff and residents.
The second community was larger. It had independent living, assisted living and memory care. The memory care was smaller, with 20 residents and set apart from the larger area. It was secure, just like the other community. Angie liked that in each community, Fred could go outside when he wanted and it was safe and secure. There were beautiful areas to sit and enjoy the landscape. There were also walking paths in the courtyard that were in a figure eight shape. Angie knew Fred would like that when he wanted to pace. Fred also enjoyed being outdoors. At home, the yard was not fenced, and Angie could never let Fred have as much time outside as he would have liked. She had to be there with him and there was always work to be done. Fred would have wandered off.
When touring the second community, Fred stayed in memory care while Angie toured the rest of the campus. She saw that there were apartments and cottages for independent seniors and they could also receive assisted living services as they aged in place. Angie saw that there was no home maintenance to do. If there was something needed to be fixed in a resident’s apartment, it was handled by submitting a simple work order. Angie also liked that there was housekeeping provided. She had seen a lively group of people just getting back from an outing. They filled the dining room with cheerful chatter and lots of laughter. Things had been pretty quiet at Angie and Fred’s house for a very long time. It was nice to see so much activity happening. Angie was pleasantly surprised to see how diverse the activity calendar was. There were things to do and experience from morning until evening in the whole campus, independent living, assisted living and memory care. Memory care had its own calendar of activities and events that were tailored to meet the needs of the residents with cognitive decline.
Making a decision
After careful consideration, Angie selected the second, larger community closer to their daughter’s home. It really surprised Angie that this community won them over. Each community was very nice and either community would have been a great choice. What she realized is she liked the larger community campus. It had a lot going on and had a busy vibe that she missed. Angie felt that this community having fewer people in memory care would be perfect for Fred. The proximity to their daughter was also a plus, as Carol and the grandkids may come visit Fred more often.
Since Fred has been in his community, Angie noticed positive changes. Fred is more engaged and alert. The activities keep him busy with a purpose. The Life Enrichment Director Susan in the community was so detailed, wanting to learn all about Fred. Because she learned about his love of filing and organizing, there is a desk in the community with a file cabinet, file folders and papers so Fred can file things when he wants to. There are sensory therapies for when Fred is agitated, they can bring him to the sensory room where there are calming scents and sounds. It has helped ease Fred’s sundowning much sooner than when he was at home. Fred loves live music! The community frequently has live performers that visibly bring Fred joy. A smile lights up his face as he taps his feet to the music. Pet therapy is something else Fred enjoys. He always has loved dogs.
What stood out for Angie is the compassion the caregivers have for their residents. They have made it a point to really know and understand Fred. They are proactive when he may seem like he is having an off day. Each shift of caregivers brings a renewed energy into the community. Angie was too tired to be upbeat and energetic when Fred was at home. Angie feels good that Fred has a clinical team looking after him. A physician visits monthly and a nurse practitioner visits weekly. The caregivers ask how Angie is when she comes to visit and can they do anything for her. She feels cared about and loves to chat with other family members and has joined a support group offered by the community. Angie has made some delightful friends. She has also reconnected with her old friends.
The community comes alive with special events and celebrations all year long. Angie forgot what that was like because she and Fred were homebound for so long. Carol and the grandkids come and visit. The visits are pleasant and Fred is more relaxed and not as cranky as he used to be. He likes to look at the aquarium and bird aviary with the kids. It is something they all enjoy. Sometimes the grandkids come for special events and live music. Special memories are being made by being present and joyful in the moment. Angie is so grateful to have found a community that has become family to them and has helped Fred have the best days he can have every day.
Their story doesn’t end there, though. Angie really didn’t enjoy living alone in the home that she and Fred lived in for over 50 years. After 3 years of caregiving, Angie didn’t want to maintain anything. She wanted to be close to Fred and really loved the community. Soon after, Angie put their home on the market and moved into independent living. She feels good that she can comfortably age in place and there will be help if she needs it. Angie is enjoying the lifestyle at the community and the new experiences she is having and friends she is making. Angie will tell you she wished she and Fred moved to the community sooner. The struggle they had living at home was hard and lonely. She sees now how much easier it is when there is help along the way and people who walk alongside you on this journey of finding the new normal when a loved one has been diagnosed with dementia.