June

This pictures was made about a month ago. 

Experiences throughout our lives changes our perspective. For so many years, I enjoyed the month of June for many reasons. As a teacher, it was nice to close out the previous school year and know we had a breather before the next year. It usually meant traveling to see family or a brief vacation, Father's Day, our wedding anniversary, my nephew's birthday, and it often signaled a time I would teach a writing institute which I loved doing. 


Several of those events are still part of June, but my perspective on them has changed. I still enjoy that the school year has a beginning and an end. We still celebrate Father's Day in June, but it is a bittersweet celebration. I'm thrilled I still have my dad here to honor on Father's Day, and I know Shelley is happy to have her dad here for that day also, but she is more like a parent to him now. We brought Billy home for Father's Day, and my parents came to visit that day also. We had all of our family here - kids and everyone - and we had a nice simple lunch.  Billy seemed not to recognize this as the house we had lived in together.  Part of that may be due to our multiple moves in the last six years. Before moving here, we had lived in the same house for fifteen years. From what I understand, though, dementia patients often lose their way in homes they've lived in for many years. One of the residents in the unit at LP has been there for a few years, and she frequently asks where her room is. They only have nine rooms and one hallway, so it's not a tricky maze. All the residents' names are on their rooms except for Billy's because he kept taking it off. I found it in his pocket and various places, so I guess they finally gave up. 


Another June event is the anniversary of our son's death on June 6th.  It's been five years since he died, and the pain is more bearable than it was, but you never "get over" the death of your child, and I don't ever want to forget how important he was to us or others. It sort of sneaks up on me, but when it comes, it's amazing how many of the details come back. We do have some great memories of our son, even though he had some really troubled years. I'm thankful for the good memories and laughter Andrew brought into our lives, and I'm thankful he is at peace. 


June is the month Billy and I were married, and it's another day to think about what he doesn't remember. We've been married for 31 years now. When we married, we knew it was for life. We agreed that no matter what came up in our marriage, divorce would never be discussed, and it never was.  I don't remember ever being so unhappy with each other that we would want to part company. We could get very angry with each other, and we argued vehemently at times, but we could always work it out. 


I can now add that this June 2012 has become a month of Alzheimer's Disease taking over much more of Billy's brain. A friend asked me today how long we've been dealing with this. It's been a long time - I first started seeing red flags in the summer of 2001, but the decline was gradual over several years. In the last five years, since true diagnosis, I've seen gradual decline with a few big dips. This last dip has been profound. I've been able to cope through all of the disease, but this last dip has really gotten to me. I find myself feeling sadder and sadder when I visit Billy. I work hard to be upbeat and maintain a positive attitude when I'm with him. For some reason, it hit me harder tonight, and I could not hold back the tears as I visited him. He had no idea that I was upset. He talked and answered my questions, and very little of it made sense. Humor helps, and I can nearly always find it, but I couldn't tonight. One good thing for me is that he still tells me he loves me, and when I told him I loved him tonight, he said, "I love you more." He's said that to me for years. What a blessing. 


The bulleted list below gives a pretty accurate description of what we see with Billy right now. The only one that doesn't really describe Billy is the description of sleep. He sleeps well because he is medicated. The description comes from the Alzheimer's Association website. They describe AD as seven stages. No one really knows how long a person will spend in each stage - it's different for different people. The medical staff is wonderful about seeking answers. When they see a decline they look for infections or reactions to medications. Recent blood work shows that Billy is physically healthy - no infections. He continues to lose weight - almost 25 pounds since January, but he's still a very healthy weight. He eats well, but he walks most of the day. They are adjusting his medications and trying to find a schedule of meds that will help deter his anxiety and nervousness in the late afternoon and evenings. He wrings his hands often, shakes his leg when sitting, and has general anxiety in the evenings. 

Stage 6:

Severe cognitive decline (Moderately severe or mid-stage Alzheimer's disease) Memory continues to worsen, personality changes may take place and individuals need extensive help with daily activities. At this stage, individuals may: Lose awareness of recent experiences as well as of their surroundings Remember their own name but have difficulty with their personal history Remember: It is difficult to place a person with Alzheimer's in a specific stage as stages may overlap. Distinguish familiar and unfamiliar faces but have trouble remembering the name of a spouse or caregiver Need help dressing properly and may, without supervision, make mistakes such as putting pajamas over daytime clothes or shoes on the wrong feet Experience major changes in sleep patterns — sleeping during the day and becoming restless at night Need help handling details of toileting (for example, flushing the toilet, wiping or disposing of tissue properly) Have increasingly frequent trouble controlling their bladder or bowels Experience major personality and behavioral changes, including suspiciousness and delusions (such as believing that their caregiver is an impostor)or compulsive, repetitive behavior like hand-wringing or tissue shredding Tend to wander or become lost I write about my true feelings, but I want all who read this to know that I am okay. I may not be having the time of my life, but I am really doing well. My faith is stronger than ever, and the knowledge that what we have right now on this earth is temporary provides me peace and comfort. I will see my son again, and he will be healthy and praising God. I will be with my husband again - the original unaffected by Alzheimer's Disease husband. I sometimes allow myself to wonder why we are walking through this right now, and I say WE because I do not walk this journey alone. I have the most incredible family and friends who provide a support network for us, and they are just as affected by this as I.  I don't know why Billy has this disease when seemingly his cousins and siblings are not affected by it. He doesn't deserve to have it. Billy was/is not a perfect human being (only one of those walked the earth), but he is the best hearted, do anything he could for a friend or family member, caring, and funny guy I know. As we walk through the unit together on the way to the courtyard, Billy stops to hug or give a pat on the back to at least three of the elderly women who live in the unit. He has a very kind spirit - still. Another wonderful blessing.  I appreciate that you read this, and that you lift us up in prayer. Peace and love to you all. Let's enjoy July!