Saturday, February 13, 2010


As a blogger, I really am terrible. Trying to get a handle on expressing myself, it's difficult to find the time in the day for this. However, it has been pointed out to me that to take proper care of oneself, you must do it every day. For example, walking is great exercise, but not if you do 20 miles one day and then don't do it any more for three months. Half an hour a day will do ya! But you really do have to make the time each day. So here I am again, planning a specific half-hour period to force myself to participate in thinking about my day.

I suppose most bloggers have a much better plan in mind, but I'm really here to maybe touch the lives of others or be touched back. Specifically, I started out thinking that I could just talk about everything, but really, I need to talk about two things: Alzheimer's (my mom) and RSD or CRPS (my husband).

My mom made the move back up to where we'd grown up, and where I still live, just a little over two months ago. I'd made the arrangements for her to live in an independent facility; a place that offers the ability to move to assisted and further for her care as we move forward. She is now fully installed, new doctors have been found, and we're beginning to settle into a routine. I see her two to four times a week, but mostly on Sundays when I take her to church, then to brunch, and after that we do something of her choosing. Life with mom right now isn't bad: she's bright and intelligent, though having trouble with her memory, but the biggest problem appears to be paranoia. It's not terrible, but I can see that it is the one thing that causes her the most grief - and those around her.

I've begun reading books on Alzheimer's and hope to better educated about what to expect as we move through this process. I had a close friend at work whose father lived for nearly ten years with his diagnosis, and towards the end it was very difficult for all concerned, but it helps me to have some perspective.

My husband was diagnosed with RSD (reflux sympathetic dystrophy, now more commonly known as CRPS-chronic regional pain syndrome) five years ago. Unfortunately, the diagnosis came late for us, as if it's caught early there's more help for the patient. Most likely his disease process came about as a result of one of the many surgeries which followed an initial injury more than ten years ago when he was attacked by two dogs, Rottweilers. He had actually recovered fairly well, though with significant pain and problems in one forearm, but was back to work and a contributing member of society. He began having more serious swelling in his lower left leg, one of the other serious dog attack sites, which progressed rather rapidly and later moved to the other leg. As anyone with CRPS knows, there are other symptoms, but it's not really my intention to educate people here about the disease, there are much better sites for that information!

So here we are today: my husband spends more than 23 hours a day in his bed to keep his legs elevated and help alleviate both the swelling and the pain. He's on significant medications, which have really changed him as a person. I don't think even he realizes how much. Though he has a reasonable disability package through his last job, he has become addicted to online purchasing. He's run through quite a number of items of choice but nothing which I'll be able to make much money off of in return.

Though I have tried not to go there, I am now taking over everything - though with much struggle. He doesn't feel like he's contributing and so doesn't want to give anything up: paying the bills, etc. Our relationship has deteriorated to the point that I don't even know whether we can save it, or if he really wants to. I don't plan to leave him, but I do have a young daughter for whom I'm responsible and I will do whatever I have to in order to make certain she has what she needs to thrive - and that includes a good atmosphere in the house.

Recently having hit a real wall in the relationship, we came to agreement on four specific items, one of which was me taking over responsibility for most things. Assuming he follows through, then I will stay, but I have nearly reached the point of no return. I have to be able to know that the bills are being paid and that we are at least solvent, or I will go and find a place where I can be solvent on my own.

That seems like enough for today! I've danced around these two topics for a while now, and now they're really out there. Maybe tonight I'll be able to sleep - something that's eluded me for a long time. From here on out I hope that I'll be able to just talk about our daily activities and how we're dealing with the two significant health issues in our lives - and looking for any insight as to good ways to deal with them!