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It's early in the morning of August 7th 2002 and the ringing of the phone drags me out of my sleep. On the other end is a caregiver at mom's facility. "Your mom is mottling and you need to get here soon if you want to be with her."
Thirty minutes later, my wife Ellen and I arrive in mom's room, to find many of her caregivers gathered around her. They had taken turns sitting with her all night. A round of hugs and it's now our time to sit beside her, as her breathing slows, becomes increasingly erratic and finally stops.
Her passing that morning brings to a close the eight-year journey she, we and her increasing dementia shared. In this article, I would like to detail strategies used to help mom maintain her independence, for as long a possible...
Her story
Born in Northwestern Ohio in the US, in March of 1922, Grace Louise Keeler never seemed to have the wanderlust that took her three children to different parts of the country. She met and married our father, Roy Croninger and seemed to find satisfaction as a wife and mother. In the 1960s she took a job as a cashier in a large grocery store, working there for over twenty years. Not one to settle down after retirement, she continued to be active in her church, social organizations and as a driver for elder residents in our home town.
Lessons learned
[For each section, I'll talk briefly about challenges we both anticipated and didn't - and how occupational therapy was a powerful tool that helped both Grace and the family in keeping her independent for as long as possible].
Grace often expressed anxiety at the possibility of "losing my mind", as she felt women in her family often had as they aged. Years before we saw symptoms of memory loss, she set out to catalogue many of the items in our house. She wrote a letter detailing the history of each object and shared where she wanted it to 'go' following her death. In a second letter, she expressed her wishes for her own funeral, selecting and paying for internment and the services.
Although we often felt she was 'rushing things', her forethought made the process of dealing with her loss much less traumatic for all of us.
Dementia
The changes came on slowly at first. My sister remembers that letters from mom would arrive with lots of tape on the back. Mom would have opened them a number of times, not being able to remember whether she signed them or put something in she had wanted to. Her handwriting, which was never good, was becoming less legible. Later, birthday cards arrived, addressed to the wrong niece or nephew.
Dad had passed away in 1994 and we became much more acutely aware of problems, as well as how they had worked together as a 'team' to hide them from us. We developed a routine where one of us or a friend would visit her periodically. On trips home, we began to notice spoiled food in the refrigerator with the date that the previous visitor had placed on the wrapper. The freezer had become a study in 'freezer burn', as we became aware that nothing had moved out of it since his death. The house was gradually becoming increasingly cluttered and the garden and bushes she had been so proud of were no long being taken care of. Mom was also beginning to lose things more often. Friends now occasionally called, concerned of the changes they felt they were seeing.
Lessons learned
Three critical points here.
We took mom for an evaluation at a nearby teaching hospital. She had a full neuropsychological exam, which confirmed a diagnosis of dementia. Although having the diagnosis does not change anything, it made mom and us aware of the problem. She felt better that she now knew she was "not going crazy". It also allows us to research and share what we would likely see in the future. The three of us set to planning for that future.
The second point - possibly the most important I would make - is that we began to develop this plan before things reached a crisis point.
I utilized Allens Routine Task Inventory (RTI), to help us get a picture of her abilities and the care she required. At that time, mom was 100% able to participate in discussions. We were able to ask her what her wishes were and to jointly agree on what behavior on her part would require a decision on ours. We were fully aware that there would come a time when none of what we discussed would be remembered. Still, it allowed her to be in charge of decision points and for us to understand her needs and fears. The discussions were frequently painful for her and us. The plan, however, served us well in the days and years that followed.
Finally, mom and dad had previously granted us a power of attorney, which allowed us to act on her behalf when conditions necessitated. The point in all this is that, by knowing what your loved one or clients are up against and having the legal authority to act, they will not be operating in a crisis mode.
Think of it as a tripod with all legs: Knowledge, a plan and a legal right to act - equally important.
"I want to stay here!"
Her strongest desire was to remain in the house as long as possible. The decision to leave would be based on her suggestion, "when I can no longer take care of myself". We 'operationalized' this to mean that we would watch her personal hygiene, safety in the house and ability to find her way to and from sites on foot. I'll deal with driving as a separate issue later.
We identified two areas that were affecting her ability to function independently: clutter and organization. On each subsequent visit we worked to decrease the volume of items in her environment. Mom was involved initially in helping us identify papers, keepsakes, clothing and furniture that she wanted to keep (although we had to watch her, because she would often go behind us and takes things out of the 'throw' or store boxes (sneaky devil that she was!) It was very slow work, as we made a point of encouraging her to talk about the history of objects and pictures, particularly if it was to be stored or discarded.
lt turned a potentially traumatic process into a decidedly therapeutic experience for all of us.
Once we reduced the volume of material in the house, we set to developing 'work stations' for common tasks. Dad's clothing had been moved out of the bedroom and she allowed us to remove furniture that she no longer needed or wanted. They had a drop-front desk in a spare bedroom, in which all bills and records had historically been stored. We removed and stored all records that she would not need. We then labelled storage spaces in the desk for each of her bills. She was able to remember to put bills in these temporary containers for quite some time.
The final workstation was near the phone. As the illness progressed, mom would frequently make repeated frantic phone calls to one of us or a friend about some "problem". We placed a large calendar, clock with date and an erasable white board beside the phone. For quite some time we could stop the calls, by having her write a note to herself on the board and/or calendar.
Lessons learned
The statement "when I can no longer take care of myself" required clarification, so we could monitor her status.
When you are working with something like this, ask yourself "How will I measure this?" If you cannot come up with a way to measure it, you likely have a concept that is too broad or abstract. Step back and see if you can break it down further.
Prior to his death, dad had asked a family friend 'Betty' to look after mom's finances. Because mom loved to visit people and desired to "pay her own bills", we used a strategy that continued to have bills delivered to the house. Mom placed them into the appropriate cubbies of the desk and Betty picked them up on designated days and wrote cheques for her. Mom would then visit the appropriate place to pay them. Betty paid some bills by mail, usually because the distance was too great for mom to walk. She also provided mom with an agreed-upon stipend each week.
Initially this strategy worked well; mom got plenty of exercise as well as "chat time", which she relished. However, it eventually became obvious we needed an additional tier of assistance. All three of us lived at least two days' driving time from our home town. We had no effective means of routinely monitoring hygiene and safety. Although we each researched the availability of agencies in town which could help us, we found none. The US health care system is not always set up to address diagnoses which are mental-health only.
Had she been physically disabled, an entity would have stepped forward, but being physically healthy was a major impediment for us.
As occupational therapists (OTs), we are uniquely qualified to evaluate and intervene in situations like this. Unfortunately, there were no OTs in or within a reasonable distance of our home town at that point. We looked into the possibility of hiring a visiting therapist, but did not feel we could afford the frequency of visits we desired. Our solution was to find a new graduate, 'Denise', who had completed her studies and fieldwork placements but not yet set for the National Exam. She was interested in working with clients in our area and in the possibility of gaining experience in a real-world environment. She was also quite happy to receive the stipend we offered. We arranged for her to work with mom twice a week, using treatment goals that she and I had devised. She provided weekly reports and called one of us anytime she had questions.
Her OT training, as well as the skills she acquired in environmental modification and task adaptation, were vital - and greatly increased the time that Grace was able to remain in her home.
"Where's my car?"
Grace loved to drive and took every opportunity to get behind the wheel. All of us remember dad growling that she was "putting too many miles on the car", or just driving too much. Although it was obvious that she missed him deeply after 50+ years of marriage, it did allow her to be the 'captain of her own ship' and she loved her jaunts. We dreaded the prospect of eventually having to take that car.
She was still a safe driver, but was becoming a very slow driver. Yet there came a time when we began to hear from family friends that she may no longer be safe driving. This was particularly concerning, as she was also still driving other elders to medical or social appointments. Some of these elders were putting increasing pressure on her for time or distance she drove them. Mom's first concession was to agree to drop her 'taxi' service. She would still grocery shop or run errands for them, but no longer transported individuals in her car. We were also beginning to notice an increase in the dents and dings on that car.
Anticipating that there would come a day when she should no longer be driving, we had spoken with the chief of police in the town. One day, she called our sister early in the morning, upset because the car was not in the driveway. She wondered if we had taken it or it had been stolen. What we later learned is that she had driven to a nearby restaurant that she and dad had frequented, parked behind the building and entered through the kitchen. This had been common practice for them. Finishing her breakfast, she then walked out the front door, did not see the car and decided she must have walked to breakfast.
Lessons learned
Again, having a plan with decision points was critical, to being able to deal with her driving in a manner that limited the trauma for her. We had established for ourselves that a moving violation, accident or observation of unsafe driving would be our trip wire. We had also agreed that the observation would need to come from a small group of friends who frequently encouraged her and who we trusted.
The power of attorney had allowed us to contact the town's police chief some months earlier. He agreed to notify us, should an event occur which involved her license plate. When mom 'lost' the car, she called the police and they notified us. We had the car picked up by a friend. We then called her to notify her that her car was safe and that we would all be coming home to talk this over. She had previously signed an agreement that allowed us to do this, but we all suspected (and were correct) that she would not remember it and would be upset.
Our initial plan had included securing transportation before this happened. We knew how she normally used the car and had contacted friends who had agreed to be her drivers for church, shopping and the beauty parlor.
This event was probably more difficult for all of us than the eventual move from her house. It represented a significant loss of independence for mom and was a sign of losses yet to come.
Because of the safety issues involved, you must be clear in your own mind what constitutes behavior which poses a risk to life and limb - both of your loved one, as well as the general public.
"Till I don't know who I am"
The various strategies and caregivers we have detailed worked well for a period of approximately two years. In that period, the memory loss and confusion was also progressing. Mom had always been anxious, now even with medication the anxiety was seriously impacting her ability to function independently. Our workstation strategy, one that had served well for so many months, was beginning to fail. Once again, she was beginning to call individuals multiple times over the same question, often mere minutes apart. Even more troubling is that her sense of time seemed to be failing, as some of the calls were made early in the morning and to individuals who barely knew her.
Along with Denise, we were also beginning to see the first decreases in personal hygiene. Denise reported she was wearing the same clothing day-after-day. The bill paying and allowance strategies were now failing; she would sometimes call Betty to complain that she had not received her allowance, when she had. Now we began to hear that she was occasionally becoming lost on foot, no more than a block from her house she had lived in for over 50 years. Watching her abilities deteriorate made me think of an OT term, topographical orientation. She was increasingly no longer sure of where she was, or how to get to someplace else.
It was like watching a purse string being pulled tighter and tighter, diminishing the area in which she could safely operate, even on foot.
We had crossed yet another line. It was time for her to leave the house she had called home for so many years.
Lessons learned
In many ways, the leave-taking likely bothered my brother, sister and I more than mom. Dementia had taken so many of her memories by now that she did not seem at all upset at leaving the little house at the point of Clinton and Schultz Streets.
We had previously been able to find an attractive facility in our home town. Mom had earlier expressed a desire to stay in-town until she did not know any of her friends. At that time, a number of the facility residents were friends or close acquaintances and she took to her new 'home' immediately. She did ask a number of times when she would return to "her home" - but once she saw her room with her furniture and pictures, she seemed to settle in without further questions.
We learned a valuable lesson in the year she spent there. A facility that looks good and does a good job of 'selling' to you is not necessarily a great place.
It is important to talk to the caregivers who will interact with your loved one - particularly important if, like us, the family members live distantly.
She was always well taken care of, but we gradually began to understand that her caregivers at this facility were too overworked to be able to spend much quality time with her.
The year passed quickly and it became obvious that mom had crossed one more line. She seemed no longer able to recognize any of her friends.
To Maine
Our brother and his wife brought mom to Maine in the Northern part of the US in March of 2002. We had been lucky to find a great facility in a town where my wife and I worked, that proved to be everything the one in her home town had not been. Once again, we were able to get a few pieces of her old furniture and pictures moved to the room prior to her arrival.
The story of her time in Maine was pretty much one of excellent care, by a facility that was staffed with individuals who enjoyed interacting with the residents. She maintained her sense of humor and nearly always seemed to be in fine spirits during my once-a-week lunch visits and Sunday outings. The memory loss continued, as did the decrease in her ability to care for her hygiene. One Sunday, we entered her room to find her prepared for a day's lunch, but staring intently at the 50th Wedding Anniversary picture of her and our father. She still knew me and asked "Who is that man standing beside me in that picture?" I replied that this was dad, to which she replied, looking back at his image, "Well he wasn't a very handsome man, was he!" My wife, daughter and I were barely able to maintain a straight face.
Curiously, along with the losses seemed to come peace, more smiles and laughter.
The anxiety that had plagued her during all of her adult life faded. The diverticulitis that often made her miserable or led to a hospitalization also departed - and she was able to eat food that traditionally had produced a painful flareup.
She is back in Ohio now, sleeping besides our father. The whiteboard (left) hangs in my woodshed, with all the beautiful goodbyes her caregivers had left on it, on the day of her passing. Two decades later, I have never had the desire to erase those kind words that they left for her.
Lessons learned
Again, I cannot stress enough the importance of picking settings before you need them!
We had looked at many options prior to the move to Maine. Each of us considered moving mom in with us, or possibly having an extension built for her. The increasing confusion made this unsafe; I awoke during one trip to find her trying to get out of the hotel room, so she could "go home." It would have been wonderful to have her in our homes, but none of the families could forfeit a second job to allow one spouse to stay home.
The facility in Maine seemed never to have heard the phrase "Oh, that's not my job", as staff and administrators were always willing to help. In those last days, we met hospice nurses from a local agency, that were incredible in the level of care provided. I had mentioned one day that she and dad had enjoyed the "Big Band" sounds of their generation. The next day there was a CD player with a collection of music from that era in her room. We had mentioned the white board to the faculty and hospice nurses and were invited to bring it in. The board was hung on the wall in her room and all parties used it as a very effective means to communicate her needs and status.
Two days before her passing, we recorded 'goodbyes' from the entire family and played it beside her bed. I'm not sure she 'heard' them, but I choose to believe she did.
Final thoughts
In the 37 years I have been an occupational therapist, I was never known to be a 'cheerleader' for our profession, but this one time I will recommend us without reservation.
I do feel that the occupational therapist is uniquely qualified to assist families in this situation. Many professions have the training and experiences to help families and clients living with dementia or Alzheimer's. But the profession of occupational therapy is a truly 'one-stop shop' in my (admittedly) biased opinion.
Allen's RTI (or Routine Task Inventory) was my most valuable tool in helping my siblings deal with our challenges. It is also a tool that my brother and sister quickly became comfortable and competent at administering...
Further reading
Allen Cognitive Network (2023) Routine Task Inventory-Expanded (RTI-E) (online). Available from: https://www.allen-cognitive-network.org/index.php/allen-cognitive-model/routine-task-inventory-expanded-rti-e. Accessed 13 September 2023.
Thank you for sharing your story and experience. It's not something I'll forget and will continue to come back to.