When a loved one has dementia

I am not a medical professional, nor do I have expert knowledge of the causes of, or treatments for, any disease which insidiously robs its victim of memory, cognition and the ability to perform everyday activities. I am aware that there are many types of dementia – the one most frequently referred to is Alzheimer’s – and each type manifests itself differently from one individual to another. I can only discuss my own experience in caring for my late husband. I hope through sharing what I have learned during our “long goodbye,” I can be a source of help to other caregivers.

When we retired, we made our way to our new home in Naples, Florida. In the months before our move, my husband, at age 75, was starting to be forgetful. I attributed it to the aging process. Once in Florida, however, he had trouble orienting to our new environment, especially with respect to directionality. He frequently became confused whenever we were on the road. When he relinquished the car keys to me, I breathed a sigh of relief; as time went on, he manifested other misperceptions and I became increasingly worried.

We enjoyed socializing in our new retirement community and in our new synagogue. He was outgoing, jovial and well liked. At first, I could take him anywhere: to meetings, concerts, lectures, or social events, and no one suspected that he was gradually losing his awareness of the world around him. He came to depend on me for all decision making, yet happily went along with all plans.

He was fond of our doctor, and cheerfully greeted him with “Hello Doctor, how are you?” When I first reported examples of my husband’s cognitive difficulties, the doctor thought some changes in medication were needed and prescribed accordingly, but problems escalated. If a trained accountant can no longer balance a checkbook or calculate a gratuity, and an amateur cartoonist cannot manipulate a pencil, there is reason for suspicion. Then came diagnoses of both Parkinson’s disease and multi-infarct dementia. His neurologist urged me to join the local Alzheimer’s Support Group and this was the beginning of my lessons in caregiving.

The first lesson

It is not the patient’s symptoms, but the caregiver’s endurance level which determines when to place the patient in a facility.

I watched as the list of his incapacities grew: falling at night, necessitating 911 calls to lift him from the floor back to bed; turning on the stove or a faucet and forgetting to turn them off; wandering away from home and into neighboring homes, disrobing in a public restroom. I could not leave him alone, even to mail a letter. For his own safety and my peace of mind, I moved him to his first nursing home.  

A great weight had been lifted from my shoulders, but I was soon to learn a second lesson:

Every healthcare resident needs an advocate. The nursing home, recommended by his neurologist for its rehab program and proximity to my home, fell short of adequate patient care and was ill-equipped to deal with dementia. During my daily visits, I observed a multitude of mistakes: a nurse mistakenly administered his roommate’s medicine to my husband; the kitchen staff failed to observe his posted dietary needs, an aide forgot to bring him to the dining room at meal time. After six months of my filing complaints, came the last straw: the staff neglected to notice that he was ill with a fever. I called his obvious symptoms to the attention of the charge nurse who was writing at her desk while my husband was sitting nearby in plain view.

I transferred him to another well-recommended nursing home. Although far from my home, it included a secure memory unit. I moved closer to the facility, saving me a 45-minute commute. The unit director was an excellent staff educator, teaching appropriate activities and modeling effective ways to communicate with patients. But the unit director retired and the nursing home appointed a young charge nurse, adding the administration of the memory unit to her existing responsibilities. Patient care went downhill. My husband suffered two falls, one attributable to staff negligence by not watching while he navigated a garden cement walk with one side of his walker in the garden. He fell against a tree, lacerating his ear. Instead of sending him to the hospital for suturing, the head nurse closed the wound with adhesive strips and it soon became infected. His escalating arthritis confined him to a wheelchair, necessitating moving him to another wing.

Even more advocacy was needed here. There was much miscommunication between departments. I was constantly calling them to the attention of administrators. When the physical therapist wrote that his wheelchair was to be tipped slightly backwards so that he would not fall and that he should be seated near the nurse’s station, I found him seated upright and alone in his room. The kitchen staff’s disregard for his food allergies persisted and I found it necessary to be with him at every meal, correcting errors in what he was served and finally feeding him myself. Support group members reported similar experiences at different nursing homes, so transferring him to another facility was not a viable alternative. Hence, the importance of being there.

I now live at Tamarisk, where the Renaissance memory unit is the exact opposite. How I wish the same level of care had been available to my husband!

Third lesson

Do not deny what the patient perceives as his reality. It took a while for me to internalize this lesson. After much practice, I learned to acknowledge that my husband and I were living in two different worlds. Once, he complained that a buffalo was running around his room. I promised to have a maintenance man set his buffalo trap and the animal never “reappeared.” Another time, he declared that he was happy to be the mayor of such a beautiful city and I responded that he made the best mayor Naples ever had. He beamed with pride. This way we didn’t argue and we could enjoy each other’s company.

I needed a different approach when his fantasies were frightening and I had to impose my own reality. Once, when he was in the hospital and under the influence of morphine, he screamed that a gang of little men was about to murder him. I comforted him by asking, “Why would anyone want to murder such a nice man? “ Fortunately, his was a happy dementia. He enjoyed welcoming newcomers to his “home” and inquiring about their health and their families. It could have been much worse.

Lesson number four

Tap into the longterm memory. Through pictures and memorabilia, my husband was able to reconnect joyously with people and events from his earlier life. He never forgot how to dance and had great fun when he heard big band music. He stood up in his enclosed adult walker and, with tiny steps, moved in perfect rhythm, twirling me under his arm.

Writing about my long goodbye to a wonderful husband has brought up bittersweet memories. Despite his passing fifteen years ago, I think of him lovingly every day. Although dementia becomes the end of shared decision making and normal two-way adult conversations, sadness need not consume the caregiver. There are challenges to face and skills to learn, as well as knowing the satisfaction of having grown from the experience.

Ruth Jaffa Albert may be reached at ruthandtootsie@gmail.com.