But I Already Have My Lipstick On:  Our story of dealing with Alzheimers 

Chapter Twenty Eight

In late 2002, Scott and I decided that the two story structure of our home was no longer conducive for Belle’s care. She was having more difficulty navigating the stairs, and the upstairs bathroom was too small to be able to assist her in the shower without being a contortionist. We needed a one story home with a larger bathroom. We discussed looking for another home in our area and decided we were tired of living in the city.  We bought a few acres about 30 miles away outside of the city, in a small town within commuting distance.  Using the information gathered during all of our years of touring model homes and homes under construction, we began designing a new home to be built with our wants and Belle’s needs in mind.  The project gave us something to focus on besides Belle.  We spent at least one weekend day, with Belle hanging out with us, clearing the heavily wooded lot, roughing it, and in general having a nice day.  We committed to the project and began to make plans accordingly.  We again had something fun to work on together. 

Belle began to have recurring episodes of what appeared to be fainting.   The first one occurred in November 2002 when Belle was visiting with Chuck and his family the day after Thanksgiving.  Belle was suddenly weak and more confused than normal.   Then she slept for an extended period of time and seemed to be her normal self the following day.  Scott spoke with her doctor, and was told that this was not uncommon and not to worry.   The doctor mentioned that we may want to consider placing a DNR in Belle’s file.  Between November and March Belle had one or two small episodes, and then would bounce back.  In early March of 2003 the worse of these spells to this point occurred while Belle taking a shower with the assistance of Scott.  She went slack and then passed out. Scott caught her before she hit anything, injuring his back catching her dead weight and yelled for my assistance. Between the both of us, we were able to remove her from the shower/tub enclosure and although the upstairs bathroom was very small, we were able to maneuver in the tight space and lay her on the floor of the bathroom.  Unlike the previous spells that involved passing out and then confusion, this time she experienced loss of bowel control.  Once we placed her safely on the floor, we were able to clean her up, dry her off, and attempt to ascertain her condition.  She regained consciousness quickly but was highly confused and sleepy. We managed to get her into bed and she slept for hours.  This spell was more severe than some of her previous spells and we once again had her checked out by her doctor.   The doctor stated her spell had appeared to be a TIA (mini stroke), which is a common symptom of Alzheimer’s due to the brittleness of the blood veins.  He also spoke to us again about placing a DNR on file.

Although she appeared to be fully recovered physically from the March episode, we noted an increase in her anger levels.  She began to lash at both of us more often, and seemed to, in general be more moody and less cooperative.  Her hostility at me was obviously increased. She became uncooperative and belligerent without any reason.  In the past, she would normally follow instruction provided by Scott, but now instances of balking at his instructions and refusing to cooperate increased.  Without her partial cooperation, my ability to assist Scott with her personal care markedly diminished causing the majority of the physical care to be provided by Scott, as even with her resistance, she still would cooperate more easily with him than me.  I assumed even more of the background support functions and Scott assumed full lead with Belle.  I began to see obvious signs of stress in Scott.  He was obviously physically, emotionally and mentally fatigued. 

After careful consideration, I suggested it might be time to start investigating other living options for Belle.     Our ability to care for her at home was becoming increasingly difficult, and at the same time, it appeared access to day care might be discontinued, which would make keeping her with us impossible. The adult day care Belle was attending each day as a paying customer was slated to lose its state funding with budget cuts the theme of the day.  When the funding for the day care facility was suggested as a place to cut back, I tried to fight the cut backs by writing letters to each legislator, explaining in detail the hardship the closure of the facility would cause for the families that used the facility.  I also explained that some of those using the facility were paying customers, even though the facility relied on state funding for its survival.  Most of my letters did not receive a response and the one that did was a form thank you letter. 

Scott struggled with the idea of Belle living elsewhere and not being under his watchful eye the majority of the time.  He seemed to think that it meant we had failed in some manner if Belle was placed in any type of facility care.  We discussed the situation repeatedly during the later part of March.  My position was that we had been frugal with her funds, investing them carefully, so that when the time came that she needed more care than we could give, we would have alternatives available to us and that she would have enough funds to be able to pay for her care as long as she needed care.  We had always known, in the recesses of our minds, that we would not always be able to provide Belle’s care ourselves at home, and I felt, it might to time to look into what alternatives were available to us.  Scott finally stated that he just couldn’t push himself to research this area, but if I thought it was best and time to complete the research, he would listen to whatever I learned.  I began performing research for what types of assistance was available and what it might cost.

Dementia suffers require a specific kind of care that is not often readily available at most facilities that offer elder care.  Many facilities cater to the loss of physical function or a combination of loss of physical and mental function but are not equipped to deal with dementia of an able bodied person.  I quickly determined though reading articles online, speaking with staff at her doctors office and speaking with several administrators from some of the local facilities, that Belle would require specialized surroundings catering to dementia patients that were still mobile and that she was past the assisted living stage of care normally offered.  Her assisted living stage had been occurring when she was living next door to us and with us.

I located several local facilities that touted providing appropriate assistance to patients with dementia issues.  We checked out references for each location and based on the information received, decided to visit three of the facilities.  Two of the facilities were general elder care, with Alzheimer’s wings, and one facility was strictly for the care of patients with Alzheimer’s.  We made appointments to visit each facility on different days, as Scott was sure three visits in one day would be overwhelming to his guilt level.   As we made these plans, we were also told that Belle’s day care program was definitely slated for budget cuts and would be closed down later that summer.   

With the closure of the day care program looming, we were in a time crunch for addressing Belle’s needs. She could not be alone during the day, and we couldn’t afford not to work and provide her with full time care ourselves.  We discussed trying full time help in our home, but that did not solve the evening issue that was impacting us.  Although Scott struggled (felt guilty) with the decision that Belle needed full time care outside our home, he agreed without the availability of day care, it was the correct choice.  We visited the three facilities I had identified as appropriate for Belle’s care and reviewed her financial position in depth.  Whichever facility was selected, the price tag would not be inexpensive.

Each visit was difficult, and although I had initially not been pleased with stretching the visits out over a longer period, it turns out to be better to do so, emotionally speaking.  Each facility offered what was needed.  And each facility was full of suffers like Belle at different levels of decline.  The time in between each visit allowed us some time to recoup, take a deep breathe, and discuss the pros and cons of the facility in a reasonable way, trying our best to not be emotional.

We decided that Belle’s needs would best be suited by the style and care given at the facility that strictly catered to Alzheimer’s suffers.  Additionally, it was practically across the street from my employer, and although quite a distance from our current home, it would be convenient to our home under construction. We contacted each of Scott’s siblings and discussed the situation in depth.  All agreed it was time for this change.  The normal waiting list was six months, and since the daycare would be closed before then, we were uncertain how we would manage until an opening became available.    We had Belle evaluated by her doctor.  The assessment staff of the facility met with Belle and performed their specialized assessment of her to determine her function level as they related to what assistance they offered.   With the decision made, some of the burden was lifted, but none of the guilt.