Dementia

One of the saddest things I have noticed about my mom’s dementia is the loss of self-identity as a person.  We all deal with loss and stress differently. Some of us flee; some of us fight—my mom fights.

I do not mean the following as an indication that my mom was a negative person. As I’ve said, we all deal with stress differently. If I were confronted with confusion and dementia, how would I deal with this obstacle? As I know myself, I would flee. As I’ve gotten to know my mother more during this time, I refuse to believe that my mother’s choice in life to be a “fighter” is any better or any worse than mine of a “flee-er.” We both have lived our lives as best we could.

As mom’s short-term memory deteriorates, I know she notices these changes. She is probably frightened and wonders how bad it will get. She is probably thinking about how others will judge her and has decreased self-esteem. She is perhaps angry and asks, “Why is this happening to me?” It is a time of loss and stress for her.

As her caretaker, this has been a time of loss and stress for me. My mother resides at an independent senior living facility where they offer dining, medication assistance, and housekeeping services. When the signs of early-onset dementia started, I suggested the one meal dining option but insisted on the daily medication distribution. (She had mentioned that she was confused about filled her weekly pillbox.) Her last lab work had suspected that she was not getting the proper nutrition, and I thought it would be a good idea to get at least one prepared meal. However, because my mother is a very private person, I could not convince her about housekeeping services.

As the months passed, I noticed that she always did daily housekeeping, but things like vacuuming and general maintenance cleaning were not. I wanted to keep my mom in her independent apartment but worried that she might need to move to an assisted living apartment where she would have no choice about the housekeeping. I talked to the facility representative about the cost of housekeeping.  Since it was reasonably priced and not invasive to her privacy, I told the rep that I needed to talk to mom about it first and schedule the services for the next month. 

Then all hell broke loose. The next day, the rep saw my mother in the hallway and told her that she would get the housekeeping services. Since mom is a fighter, she was instantly upset. She called me that night. “I thought you told me that we were not going to get the housekeeping!  (betrayal) I’m not happy with the medication service since they wait until I’ve gone to bed and wake me up too early in the morning! As far as the housekeeping, I’ve heard that they don’t even move the furniture to vacuum and don’t do a good job cleaning! You must think that I live in a filthy apartment if you asked for people to come into my home to clean!

My mother has now discontinued the daily meals, has notified the management that she will never be interested in the housekeeping services, and complains about medication management services. She insists these are unnecessary because she knows which medications are best for her. The last time I went over to her apartment, she told me to go into her bathroom. “I thought you would appreciate that I cleaned the whole bathroom since you thought it was so filthy.” To make matters worse, her physician had prescribed a “memory” medication, which made her very ill. Since she could not remember that I had told her that she would be receiving this medication, she thinks I purposefully make her sick.

For as long as I have known my mother, the religious part of life has been vital to her. But I can now tell that dementia and her fear are overpowering her spirituality and Christian beliefs. Dementia doesn’t just rob memories of its victims; it devastates friends and family by adding the sad memories of the person living with dementia.

I never thought I would ever need to decide that my mom should no longer be driving. Maybe I put up a mental block or couldn’t imagine how I would feel if the roles were reversed. For the past year, my mother had several “fender benders,” some of which were her fault. Her insurance would take care of the small repairs, and she would always dismiss these events as “being distracted” or “being in the wrong place at the wrong time.” Because her reasons seemed plausible, I never thought it had anything to do with her cognitive ability.

That all changed a couple of weeks ago as I was driving her to a doctor’s appointment. She suddenly turned to me and stated that she didn’t think that she should be driving anymore. Her statement surprised me since one of the reasons we were going to the doctor was to register her for a senior driving assessment. So when she told her physician that she wasn’t going to drive anymore, I was relieved that I did not need to “take the car keys away from mom.”

When a parent is no longer able to drive themselves, their transportation needs do not magically disappear. Fortunately, my mom lives at a facility where she can sign up for transportation to any event. She also has me and a group of friends who can get her where she needs to be. Sure, it will take a little more planning, but I was hopeful that she would accept the change.

It seemed too that every person she told about “giving up driving” had a personal story that involved an elderly driver who hurt others or themselves. One of the most tragic stories involved a resident of my mom’s facility who drove their car into an outdoor crowd. Two of the residents and one employee of the facility were killed when the driver confused the brake pedal for the accelerator. I think about that incident whenever I felt bad about taking my mom’s independence away from her. What would be the lesser evil for her – dealing with losing her independence or knowing that she hurt or killed someone?

My mother was a brave parent who taught me to drive. Driving is a lesson on how to be independent. But this time, instead of a lesson of independence, I am the teacher who encourages my mom that it is okay to be dependent.

My mother currently lives in independent senior care, which provides additional services like medication assistance, meals, and shuttle services. By her own admission, my mom is no longer comfortable driving her car; she needs someone to drive her to the stores to shop. Because of her short-term memory difficulties, I was also concerned that she might forget about the time or why she was there when she would get to the store. My main concern at this time is to prevent her from being scared, so when she mentioned that she needed a couple of pair of “slacks,” I suggested that we go shopping.

Shopping in the age of covid-19 is very unusual and challenging even for those who are not seniors. Dressing rooms are closed, and the brick & mortar stores have limited inventory. So before I go on, regardless of the political controversies, it is a matter of life or death that seniors need to wear masks. However, for seniors, the mask presents difficulty with fogged glasses and the entanglement of hearing ads; besides, my mom found it difficult to understand me through my mask.

After deciding on a few different styles and colors in the petite section, we asked a sales rep what to do if the pants did not fit. I was surprised to find that stores encourage customers to purchase clothes and try them on at home. If they don’t work out, the customer has six months to return them for a full refund.

We purchased two pairs of pants, which fit well when we returned to my mom’s apartment. However, the length needed to be shortened. At her tallest, my mom’s height was 5’2”. But because osteoporosis runs in her family, she is currently 4’11”. Even though the pants were petite size, they needed to be shortened about an inch. 

I come from a long line of sewists. Growing up, I remember my mother would sew many of my clothes. My grandmother was an amazing seamstress; she could see an outfit in a catalog and create a pattern for it in the proper size. She would then sew a similar “copy” of the dress; one of these creations was my mother’s wedding dress.  I also remember that my mom and grandmother let me “play” with their sewing machines, doing simple craft projects. And although I did not inherit the true “seamstress” gene, I can hem a simple pair of pants.

This shopping excursion reminded me that there are many levels within one event when caring for an aging parent. Like caring for my children, the event is composed of planning, anticipating challenges, and follow up.  The saying“ Everything comes back around” is so true.

Another part of caring for an aging parent is helping them with their finances. I never thought that my mom’s memory would decrease to a point where she could not remember which bills she had paid; I think I’m still in shock. For the past year, she had mentioned that “a nice lady down at the bank” had been helping her balance her checkbook. Again, I wasn’t sure why she was having problems since she wrote about ten checks per month. I knew that she was getting various incomes; maybe that had something to do with her difficulty.

I want to say that it’s one thing to invade a parent’s privacy when it comes to safety matters, but I think the ultimate invasion – is knowing their financial position. Maybe it’s a Midwesterner thing, but it was instilled in me at a young age that a person’s wealth and financial matters were their own business. You could ask someone where they went to church or who they voted for, but you never ask them about their money.

Before taking my mom, I met with the bank manager to ask which documents or forms I needed to bring. Since I was already my mom’s power of attorney, they could disclose her monthly bank statements to me; in fact, “the nice lady from the bank” had a three-ring binder in which my mom had accumulated three years of reports and various photocopies of her check ledge. (Teri is the name of the “nice lady,” and she is, in fact, very friendly and extremely patient.)

In my previous post, I mentioned that balance is essential when caring for an aging parent. So when dealing with financial matters, I want my mom to have the independence to decide “when and what” to purchase, but no need to worry about the “how.” Currently, I’ve set up an Excel spreadsheet to keep track of incoming transactions and enter her written checks once a week.

To achieve that balance, I also need to see my mother’s difficulties realistically. About a month ago, she wanted to order clothing through a catalog. When they asked her for a credit card number, she told them that she wanted to mail them a check instead. As expected, the company did not place the order, but mom insisted that she needed to “void out” the check that she hadn’t begun to write out. In her mindset, her intentions are her reality. As I’ve said before, I wish this situation wasn’t happening to my mother. I’ve realized that there are things that I can do to protect her financially; however, I also know that there will be a day when I will fail to protect her from herself.

It’s been about three weeks since “the phone call,” and my first goal has been to find out more about Mom’s physical and mental health. She had issues with balance caused by an inner ear condition, so she was scheduled for therapy and routine medication checks from her primary care physician. Unfortunately, her current doctor was moving out of the area, so I needed to find her a new doctor.  Since my son works for one of the hospitals in our town, we could see a highly recommended physician nearby.

On the day of the appointment, a cognitive test was given. As my mom struggled to replicate shapes and subtract numbers, I was unnerved at the rate that my mom’s memory had suffered. In past months, she had told me that she believed her cognition was very good – when comparing herself to the other residences at her senior independent apartment building. When asked what the date was, she answered that it was a Monday but could not remember what month it was. “It’s February, right?” as she looked at me. I wondered what was going through her mind. If it were me, I would be frightened and frustrated that I could not figure out or remember calculations that I once took for granted. I would worry about what laid ahead.

In caring for an aging parent, there exists a constant attempt to create a balance. I don’t want to embarrass her by telling the doctor about a lap in memory. However, I need to be honest with them about problems concerning her safety. Like many of the elderly, my mother takes several meds. After querying her, I noticed difficulty in remembering how many to take and at what times of the day. Her physician suggested her pharmacy package the meds in daily “bubble” packs, which would clearly state at which time of day to be taken. I called to switch to a pharmacy that processes these packs. As an additional safeguard, I have asked for the daily medication distribution “service,” which her senior living facility provides by one of the nurses on staff.  

Another part of having balance is keeping my mother’s fears and confusion to a minimum, in other words, keeping as many things in her life as the same. The director of her apartment said that her apartment is not in the “assisted living” section, but if she needed full assisted living services, they would still be available to her. Currently, my mom does not require cleaning and linen services, so I was very thankful that she could stay in her same apartment, which has become a familiar home.

Mine occurred on a Tuesday afternoon just as I was walking out of a class at Southeast Technical College. For several months, I had noticed that my mother was getting a little more forgetful about her weekly activities. As she had always been strong-willed, I had gone along with her explanation that the forgetfulness was just due to having too many things going on at the time. But now, the director of her senior apartment complex was calling to let me know that Mom was very confused, distrait, and had been inconsolably emotional throughout the day.

The director explained that she believed my mom had an early stage of dementia and should be evaluated by her doctor.  At the time, I was still in a moment of disbelief; this person who I had known for all of my life and who had not only been in control of her own life but mine as well was now “possibly” unable to handle daily activities. However, I called the clinic to make an appointment with her physician for the next day. Later that afternoon, I went to Mom’s apartment to see for myself the situation.  I could tell that she had been upset but was relatively calm and collective now. She admitted, however, that she had been confused about dates and the times of the week. I later told her about the doctor’s appointment I had made for the following day, and she seemed to acknowledge it by saying, “That’s a good idea.” However, when I left in the early evening, she didn’t seem to remember why we were going to her doctor.

During the drive back home, I knew that this was one of those times that would change both our lives. I don’t know how or what lies down this path, but I can only go forward, as I’ve said before. I would love to wish that this wasn’t happening to my mother and hope that I didn’t need to deal with the responsibility, but it is happening to her, and it is my responsibility as her only caretaker.

Last week, I missed posting to my blog due to a small adventure I have volunteered to take on: helping my mother move to a Independent Senior Living facility. She has lived in her small home since 1962. After a few recent falls this past year and time in the hospital, I needed to have “the talk” with her about living alone and my concerns for her safety. After touring many of these retirement locations, she settled on a facility where two other women from her church already reside. After my father died in 1995, she has been living on her own and has lived a life of little social interaction. I am very excited for her and she appears to be looking forward to the move.

Her present home has 900 square feet on the main level and her new apartment will be close to 1240 square feet, so we are quite confident that her furniture will fit in the new area. However, the basement “was” filled with many things that she will not need as a new apartment dweller. For those of you who have helped aging parents “downsize”, this can be at times, a daunting task. For my mother, each object has a story, a value, and a memory. As we continued through the process, I began to realize that it wasn’t just “stuff to be sold or given away” but each these stories were a “loss” to my mother. And as with all “losses”, time needs to be given to recognize and grieve.

I think the most traumatic part of all this for my mom was “where to start” organizing the move. For those who have moved to new residences, this doesn’t seen like a big deal, but she had never moved within the last 57 years. Within a span of 20 years, I have had three major moves, so I had some idea how to label boxes and organize areas: the “moving sale” area, the “donate” area, and the “throw out” area. Each day, for the last three weeks, we moved from room to room and garage, categorizing each item.

For the moving sale, we decided to transport these items to my house, since I have a double garage in which to move the sale in due to bad weather. I would bring out of her basement as many boxes as my SUV could hold. Then at night, I would go through the boxes and mark those moving sale items with a pink tag which signified that the item was hers. I would repack the boxes and stack them in my dining room until the moving sale which took place on May 31st and June 1st.

One of the things I was hoping to do for my mom was to take the proceeds from the sale of her items and purchase a new washing machine for her apartment. (Her apartment has washer/dryer hookups.) I still have some items that I have put on Marketplace and online rummage sales, but I anticipate that I’ll be able to do this for her.

Although this adventure took much time and effort, I feel that it was an opportunity for my mother and I to create new memories. Someone once told me that you never really know someone until you “go on vacation with them”, “marry them”, or “help them move.” I learned that my mom has a sense of humor that leans toward dark comedy. For example, one morning we were both downstairs cleaning out her kitchen pantry, and she appeared with a saw which was as tall as herself; (my mom is 4’11”.) She raised it above her head, like a “Lord of the Rings” character ready to smite an enemy and said, “Guess what this is used for?”