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

Chapter Ten

All the things that were going wrong combined with all the issues that were coming up had pointed to this diagnosis, but hearing it confirmed was hard.  I felt hopeless, embarrassed and angry.  We were already expending so much energy to protect and help her.  The words that were now coming out of the doctors’ mouth meant it would be getting worse and we would, because of her disability, be forced deal with and provide an increasing amount of daily assistance for her.  I spent time on the internet reading and rereading Alzheimer’s information and family stories.  I researched support groups.  I worried.

Over the years of our marriage Scott’s relationship with his mother had been a source of discord between us.  I felt that he always placed her first, that her wants and needs, real or imagined, always came first regardless if this placement was needed or warranted.  Scott felt obligated.  He had a duty as her son; she was his Mother.  He wouldn’t be here but for her.  During times of discord over this topic when we were younger, I’d point out her other children did not feel this same obligation or react in this manner.  Why did it have to be him always riding to the rescue?

And now that we were older and supposedly past the issue of his relationship with his mother and its impact on us as a couple and family, her diagnosis placed us back into the same old space of discord over her. Scott felt obligated to anticipate her wants and needs, to take care of her regardless of the impact. I felt trapped in an escalating situation with no end in sight. Our kids were old enough now that we could have some freedom, and finally, we could do a few things if we wanted.  Instead, at Scott’s insistence, we were accepting this huge obligation with little or no help from his siblings.  The time frame following her confirmation of illness was not a good time for us.

Two of Scott’s siblings lived close enough to help on a daily basis and two did not. The issue then became, did they want to help and would they help?  And if they wanted to help, would Scott want them too? Scott had the ‘power’ by way of the power of attorney and his relationship with his mother to handle and dictate all that needed to be handled.  How much help would he want or allow? And what would the impact of his need to control every aspect of his mothers care do to us and our lives?

What would and could his siblings help with and how could he control it?  I was automatically involved strictly because I am his wife and although I was allowed an opinion, he was the decision maker, in control of her finances and person.  He treated his siblings in much the same manner as he treated me.  They were allowed an opinion, but the final decision was his alone.  His feelings of reasonability for Belle, which had always been in overdrive, skyrocketed after the diagnosis.  He needed to do more for her and we would just have to make whatever sacrifice was needed.  Although, in my mind there was never any doubt Scott would be the primary person responsible for her physical and financial well being, the fact that our family, as well as us as a couple, would be further impacted by her diagnosis came home with a renewed force.

As time passed, we argued about what was required of us immediately, we argued about what would be required of us in the future and argued about if we could make it through this ordeal.  I pressed, wanting the siblings to do more, be responsible and shoulder some of the burden.  Scott needed to be involved in every detail and control the actions of others, partially to reduce his stress level.   We argued about his siblings and how they felt they fit into the situation. And of course, the siblings, whether close or far, wanted input regarding Belle’s situation (financial and personal), without any of the immediate responsibility. It did not matter that we were saddled with the weekly, hourly and minute by minute care of her, they had opinions and wanted input regardless of their location or involvement.  Over the next few years, the stress and discord between Scott and his siblings would peak, ebb and flow, as decisions were made on Belle’s behalf and old rivalries between the siblings were resurrected.  There were also periods of arrangements and agreements, bonding and support between the siblings as the stress of Belle’s situation impacted each of her children and their families.

Belle had stated many times in my presence before her illness and after her diagnosis that she did not want to burden any of her children with her incapacity.  Growing up, she was impacted when invalid relatives lived with her family. One time in particular, I recall her stating the bedroom she and her sisters shared was given to the ill adult that came to stay and that this adult was overbearing and unpleasant.  She had thought this was unfair. She had also experienced the other side of caring for the elderly, as she had taken care of her mother later in life. Mae had maintained her mental abilities but had long term physical issues and had lived with Jim and Belle for several years before her passing.  Although Mae had been easy to care for, the responsibility of having another person under one’s care, in one’s home, especially a parent, created stress for Belle, who had told me that caring for Mae had placed additional stresses on Belle’s relationship with Jim.

Now, Belle felt she was functioning ‘enough’ on her own and thought by living on her own, she was saving us the same burden she had experienced at various times in her life.  She felt she was trying to be mindful of the personal space that couples needed, although based on my relationship with her throughout the years, I often found this sentiment amusing.  I felt she had had very little regard for the space a young couple needed back when Scott and I first married which had been one of our biggest areas of contention through the years.   But, at this point, although her intentions were good, she had no comprehension of how much time and effort was already being expended on her behalf or how burdened we sometimes felt.  She wasn’t aware of and did not understand the invisible and not so invisible support we provided to keep her living on her own.

I voiced my feelings and frustrations outwardly more often than Scott did, but we both felt pressure and obligation to care for her.  In addition to all the methods being used to keep her living on her own, we rarely went anywhere that she was not with us.  We spent many evenings with her at her home, watching TV or attempting to complete small projects. Although Scott’s family and mine rarely mixed, with the exception of our sons’ birthday parties during their younger years, Belle began attending my family gatherings with us.   We strived to create interaction with her for simulation.  We also strived to minimize the time she spent alone.  Of course, we could not and did not display any of our stressed or obligated feelings regarding the time and effort we were expending for her care and safety to her.  She had not gotten ill on purpose.  We were just trying to live our lives, raise our children, take care of her special needs, be mindful of her feelings and still have time for each other.