Friday, February 14, 2014
Thursday, February 13, 2014
I could hear his last words echoing in my ears as I hung up the phone. "Holy Shumoly," he said with an upbeat anticipatory voice. He had just learned of our plans to have a family get together at our favorite Aunt Patty's on this upcoming Saturday for the first time today. And he is as excited about it as he was when he learned about it yesterday. This is good news. It gives him hope every time he hears it.
As I relayed in an article recently published at http://practicalalzheimers.com/which-bill-will-we-get-back/, we've been through some very intense ups and downs in our journey with Alzheimer's. One of the very difficult questions I have had to face is, did I do enough? And then he said there was a cure.
I've been approached by many well meaning and hopeful individuals who have shared products that offer miracle results such as slowing the process and even claims for stopping the process. My reasoning in the past to dismiss these well meaning individuals was based on my appall of Bill lingering in his current state where he remembers just enough to cause him to suffer grief for all that he has lost. I've seen myself as being there to help him feel safe as he goes through the transitions until he is, in my hopefully mind, finally at peace in his mind. If Bill could just forget that he forgets he would be so much happier from my perception. He grieves not being able to work, to teach, to be at home with his family. We go as often as we can, but even minutes after we leave (or if I move away for a bit and return) he has forgotten I was there.
This sick, suffocation begins to drip from my head, down my shivering spine, and deep into my gut. I wonder if I will ever feel relief from the heat that is rushing me.
Which Bill would we get back?
Or would we get the restless, caged, angry Bill, confused with all the change, the loss; angry at the world. Could we really understand the monsters he would perceive in his world?
Shortly after the diagnosis, I moved my family to back to my origins in Kansas. I love our life in Michigan, but caring for Bill was becoming far too much for me there, alone. Bill was showing signs of progression in cognitive loss (early onset of Alzheimer's). We were experiencing changes in personality. More violence and emotional upheaval began to emerge. We both were experiencing loss of career in order to move closer to family for support, violence as the disease progressed and financial loss. I was trying to find my own identity again, trying to be both mom and dad, helping my son sort through his grief, etc). He had major personality changes and became very jealous of our son. We were coping, but I decided to move us back to Kansas so my son could be surrounded by our family. As for my spouse, it was a scenario where I thought I would be able to handle him at home for the rest of his life.
Then the unthinkable happened. He refused to take his medications. We were turned down for help by psychological professionals, veterans groups, and law enforcement; literally everyone. It was a treacherous and unbelievable experience. I was advised to remove myself and our son from the family home until we could get help.
Bill had friends step in and assisted him in filing for divorce. They placed a restraining order on me. Two days later, I received a letter from the district attorney to return home or to be prosecuted for abandonment. I couldn’t believe what was happening.
Thankfully, adult protective services and a wonderful attorney helped me have Bill assessed and placed in a nursing home.
The state then stepped in and reversed the divorce (my head was spinning) and instated me as Bill’s guardian.
I am now rebuilding my life. While I am court-ordered to be his guardian, I have made the choice not to abandon him. He has no memory of all we went through. I am trying to be the kind of wife I would have wanted in a spouse.
I am working through my fears. I know I have to give him the opportunity to be whole again.
If a treatment emerges that really does work, I guess we’ll see which Bill we get back.
Thursday, February 6, 2014
Sadly we say goodbye
Sadly we say goodbye to my sweet Aunt Lois' guy pal, Mr. Bill. These two found each other after caring for their first loves until the end. At 78 and 86, these two lived life like no other going on cruises, dancing the night away four to five times a week, going to water exercise, and hitting every social event humanly possible. Bill, thank you for bringing so much joy to my aunt Lois. You have won honorary "uncle" status in my heart. You will be missed.
On an added note, Bill has struggled with his health for a bit. He of course, blamed it on her. She is beautiful and sexy and is larger than life. "I've all ready had four heart pace makers put in, since meeting her," he claimed on his last visit. What a cracker. Salute, you crazy man. Tell my heavenly family I send my regards and miss them greatly.
Bill was so happy to see us once he realized Daniel and I were there. "Well, hello, honey!" he greeted me. It had been about ten days since I had been back due to a bout with the flu, a rebound of the flu, working, and weather. He was disappearing right in front of my eyes. He was a fragment of that man I married. He reached out and kissed me, then, after a long heart felt hug, he let go and reached out to hug Daniel. Dan reached to shake his hand, but Bill pushed his hand to the side, holding his beloved nephew close. And then he saw his cake. But boy did his eyes light up when he saw his cake.
I hate the changes I see in my husband. Once totally into his appearance, the man in front of me today is dazed and unruly. His hair is grown out, he dawns "bed head," and sits in a daze. His beard is scraggly, unshaven, unkempt, and this man is now unable to do the work himself; of keeping up appearances. His mustache dips well into his mouth as he tries to eat his food. He spits his food out in disgust, rubbing the hairs with his tongue. He frowns. He shoves his fingers in his mouth, trying to get me to look at the space which once held his tooth.
I reflect back to a couple of weeks ago when we had this aching tooth removed, hoping to help relieve him of some of the pain. I wince remembering as Michelle, the nurse, and I literally held him in the chair, him screaming and crying and begging us to stop. He smells of infection. "I used to do this, you know?" I knew what he was telling me. He was falling apart. He used to shave, polish his teeth until they glistened, and carefully dress himself with a pride and polish one would expect from a college professor.
The Staff in Bills unit are amazing individuals, but as is the popular trend in caring for special needs, they are spread too thin. And sadly, if these issues are brought to the attention of those, namely the supervisors who can assess the needs and sees the problems, they are often turned away by the bean counters. You, the staff, are often the ones who struggle, who hold the bag of blame when simply adding one more staff in the mix could have prevented a world of hurts. You see the pain, you feel helplessness, and you are left with the expectations to do the work of five men to make the changes to meet the increasing needs of these sweet individuals who depend on them. My heart goes out to you. You are my hero.
Thank you for making sure he brushes all the way to the gums, and massage them so they become strong again. How do you explain to someone, he can't tell you he needs help any longer. And even then he may not trust you to help him because, well, he has Alzheimer's and his paranoia interferes with the help he needs. He has new sensory issues, so at this point it hurts. It hurts to be touched, it hurts not to be touched. His skin is taut, rigid, sensitive. Maybe someone tried to shave him too quickly and he remembers
Dan, Bill, and I trudged back to the room. "Need to squirt the dirt?" I asked, laughing at the insane phrase of words that most frequently prompted him to use
This is our life, today. We have had our ups, our downs. The definition of my relationship with Bill has been tried and there are times I wanted to walk away. Today I look at our situation.
I cannot imagine not staying. I stayed and I stay because I made a promise to love, to cherish, for better, for worse until death do us part. I have been tested, but my word is my promise. It has nothing to do with love. We all fall in and out of love. This has to do with promises. It's not how I would have had my life turn out, but it is how it turned out.
Wednesday, January 1, 2014
The New Year's Resolution:
I'm a sentimental old fool, but I like to be happy. Although I know this to be true of every day, today above all days is a chance for new beginnings; a fresh slate, so be it.
The life of a caregiver can be pretty complicated. My responsibilities are immense, the bills are overwhelming, and the tiny voices
in the back of my mind can be very convincing that that my inability to fix everything makes me inadequate and unworthy.
Then I am reminded that the whole world is mine. I crush through the imaginary glass ceiling of self doubt. I call on the One and force myself to remember through meditation and prayer that I am safe.
I breath in the breath of life,
and remember there are no limits, no worries of being good enough, smart enough, brave enough.
to the voices and embrace that I am to be loved and to succeed and that my experience can be a lighthouse for others. Let me say it again: I am enough.
This year I will:
remember I do not have to be perfect;
remember that others are human also;
remember the universe does not need me to control it;
take time for me;
write the word no in my calendar so I do not feel guilty when I need me time;
take more risks;
try new things;
say yes more often;
allow my heart to be open to love;
free myself from trying to be the person I think I ought to be, and concentrate more on the person I am;
give thanks each morning
and again at night.
This year I will practice flying in my dreams.