I cannot believe it has been one year and three months since my last post. And, I can totally believe it has been one year and three months since my last post.
Where to start? Well, we moved. No one with any form of dementia likes to move. Lots of people do not like to move, but few feel like moving is like starting from scratch with no history and no familiarity. That is what it was like for Paul.
We had to do it. We had lived in Central Oregon for almost 5 years. During that time I gained 40 pounds, stopped exercising, left my full-time job to try to care for Paul full time, and slept maybe 4 hours per night. I was losing my mind. One of us needed to have a clear head. I needed help.
I called Paul's case worker at Aging and People with Disabilities for a list of available caregivers or caregiver agencies in our area. I wanted someone who could come in for a few hours every day to help with cleaning and cooking. I wanted someone I could grow to trust so I could leave for a few hours a couple times a week to go for a hike or run errands. Most importantly, I wanted people Paul could accept. As an introvert, he always had some level of discomfort around others. As the disease progresses, his discomfort increases.
A lovely middle-aged woman came out to take lots of detailed information from me about Paul's needs, personality, and style. We decided he needed two types of caregivers: a gentle, soft-spoken, kind female who would cook and clean; and, a larger, quiet male who could attend to Paul during my absences in case Paul fell or needed physical assistance. At 6'4" and 280 pounds, no small woman would be able to pick him up.
She said she has just the right couple of folks in mind - folks who loved dogs, did not smoke (highest priority), and could focus on their tasks rather than on shooting the breeze. I was excited. I looked forward to catching my breath now and again. I scheduled some help. And, then the guilt set in. What type of person am I to farm out his care to someone else? What if something bad happens? What if he hurts someone because he is confused and combative? What if someone hurts him or steals his medicine or does not feed him? I worried about the worry? I felt guilty about stereotyping caregivers. I committed to keeping an open mind.
Wait. There was still another step. I had to fill out forms. ALL THE FORMS. I had to prioritize tasks for them. I had to identify how much time should be spent on each task. I had to describe Paul's moods and when they were most likely to occur. I had to fill out all the emergency contact forms. Oh, all the forms. I figured I was about 40 hours into caregiving forms by this point.
Then the first day came. And it was a good test because Paul had a minor emergency. Some of his medications are scheduled, meaning we have to have hard copies of the prescriptions in order to get them filled. The problem with scheduled medications is you cannot order them until the patient is nearly out. Insurance companies are so strict about scheduled medications they actually estimate the number of days it should take to get the prescription in the mail and refuse to allow re-fills if the days are off at all. On this first caregiver day, I was expecting the hard copy prescription to come in the mail and it did not. This is a major problem. Although a few of Paul's seven different medications may not impact him much if missed, pain medication (scheduled) is fundamental to his functioning. Those with Alzheimer's do not manage pain or physical discomfort well. He was out of his medication. A phone call to his doctor confirmed they forget to mail the script. I had to drive 40 miles to go pick it up, drive back to our town, and have it filled. I had to be gone for about three hours. Big problem.
I did what I had to do. I met the caregiver - who I suspected smoked, provided him with the instruction booklet I completed, and introduced him to Paul before I left. I was gone for just under three hours.
After the caregiver left, Paul said he was never going to have another caregiver again. NEVER. He said the guy smoked like a chimney. Indeed I confirmed all the cigarette butts on the ground in the back yard. Paul said the dogs hated him (likely because of the cigarette smoke). Paul said he just tried to sit and watch his television show and the caregiver just sat with him and talked, and talked, and talked. Paul was exhausted. So much for choosing caregivers with specific qualities. I have learned since that most agencies just send the closest match from whomever is available.
But here is what the result is from the patient end. That night, Paul begged me to let him take his own life. He begged for a gun. He begged me to give him all his medications. When I refused, he said he would find a way. At about 2 am he told me he could find some tool to cut himself and bleed out. At about 3:30a he told me he would just walk out into the forest and get lost (it was winter - 5' of snow on the ground). It took him awhile between ideas, but I was impressed with how hard his brain was working to come up with new plans. Who thinks this way? Who finds the brain so determined and fascinating in the the midst of crisis? Me, I guess.
I laid in the bed with him with both my arms wrapped around one of his so I could feel his movement in case I fell asleep. I managed to stay awake until he finally fell asleep around 5a. That was the most frightening night I've had with Paul.
After he finally fell asleep I got up and quietly closed the door to our bedroom. I sat where I could see the door and pondered. I could not do this by myself anymore and I was not willing to torture my husband with these random caregivers. I had no choice. We had to move back home and we had to do it now. Right now. I decided. That was it. I needed my kids and my mom and my friends. I needed not to drive an hour every time I needed medication for him. I needed a gym. I needed NOT to shovel my way through five feet of snow to get to the car. I needed SLEEP!
So we moved. Just up and moved. Our home in Central Oregon is still for sale. We are renting a place Salem now. We are 15 miles from our daughter, son-in-law, and youngest son. We are 30 miles from my mother. We are 20 miles from my best friend. And now I am too emotionally drained just remembering all this to continue this blog. I will adjust my attitude and write more later.
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