April 13, 2016

I think it’s true, that the only constant in life is change.

Every time that I feel life dragging its heels, I only need to look back-and not far-to see how many changes we’ve seen in Mom up to now. Just when you think you have a handle on things, ALZ will throw a switcheroo to see if you stumble. Mom had her first day with the new caregiver, S, and I suppose it went fine…she didn’t do very much, but she spent time talking to Mom, and seems pretty nice. I need to remember not to make any snap judgements, and give S time to settle in and find her stride. Nobody’s perfect on their first day. I saw my pain specialist on Monday, and got the surprising good news that the VA finally gave in and approved me for acupuncture. Four tries proves persistence pays. I’ve always been confused about their reluctance to approve this for me. I would think they would want pain sufferers to find alternatives to the narcotics that cause so many problems. I would have had my first session on Monday, but the doctor was running late and I had to get back to Mom. I made an appointment two weeks out for my first session. I’m very excited about the prospect, particularly after he did a ‘mini’ session, using tiny natural electric currents from metal contacts placed on various points on my hands. I think he called it Korean hand therapy. At any rate, he demonstrated how it can relieve pain, by pushing on my belly before and after. It was pretty amazing.

I left his office still wearing the contact points, and I must admit that I felt pretty good. I think that after Mom is taken care of, I may look into Tai Chi classes again. Anything I can do to take back control over my health on my own is a good thing in this uncertain world. Yes, I am finally working with an excellent pain specialist, but we both know that it is as likely as not that social codes and political maneuverings could put a stop to our efforts. His unconventional approach is not one shared by all physicians, and if I ever stop seeing him, I would probably have to accept changing back to opioids. The only really controversial method we are using is a drug called Ketamine. It’s commonly known as a horse tranquilizer, so our use is definitely off label. The reason for its use at very small doses is almost as fascinating as the effects. In our slow approach to treating the pain, one of the first things we wanted to address is sleep. I wake up in pain quite often during the night, never going deeper into the healing sleep below my dreams. His theory is that pain is worsened considerably by the ‘baggage’ carried with it. Prior experiences and PTSD amplify pain, your memories adding to your current pain. The Ketamine cuts out that added noise, allowing me to only feel the pain of the moment. It also quiets my mind, shutting down the external nuisances and allowing me some peace. I found that after a couple of days on the medication my thoughts were clearer and more easily focused. It also makes the pain more focused and sharper, less diffuse. In some ways, the pain is worse now, the clarity making it more defined. But that will, in turn, make it easier to target the source of the pain.

Mom has had a boring few days. She doesn’t get up at the crack of dawn anymore, usually rising these days at nine or ten. I’ve been sleeping every chance I get, I even catch an hour or two after I write…on the days that I do. A lot of mornings lately I just turn off the alarm and roll back over. So I have been the most boring of companions. I may get to spend some girl time with her on Friday, S has car trouble so I may need to take her in myself to have her hair done. I like the girls at her salon, and it would probably be a good time to pre-pay for some more appointments. Next week Mom has her pre-op appointment for the cataract surgery, and two weeks after that, she should be able to see a little again. She’s very much looking forward to it. She took visual impairment in stride, but not being able to see anything she can identify has got her attention. She puts on a good show, but really can’t negotiate anything outside of her path between bedroom, bath, and table. She will walk with confident strides on my arm, knowing I will help her negotiate and not run her into anything. I’m not really sure how will be getting around for the time being-while I was at the pain doctor, the dogs ate my seat belts. Maybe, just maybe I could talk my way out of a ticket the first time, for the sheer novelty of the reason, but I’m going to have to get those fixed, and fast.

Today I talk to the social worker about placement. I have no idea what to expect. Even though the appointment is in Moms name, I really need to talk to him without her, at least the first time. Some of the things we need to discuss will upset her, and I want to move very carefully, sparing her as much upset as possible. Once we put things in motion I’ll try to keep my foot off the brakes, and get through it. I don’t want to delay things because of her surgery or the upcoming reunion. We’ll see how it shakes out…I should have a better idea of what to expect after today. Before she goes I definitely want to get her new underwear and socks. The continuous parade of new caregivers has hers and mine mixed up. All of her things that go with her will need to be labeled with her name. And we’ll have to decide what personal belongings will give her a sense of familiarity in her new surroundings. I don’t want her to take anything that would lend itself to a little thievery, but pictures of her and Daddy, her talking clock and maybe her Furby could go. Rights of possession get a little fuzzy with ALZ, and things tend to disappear. I want to get this discussion with the social worker in the can, before I get too far ahead of myself. Let’s see what today has in store…


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