Happy Easter!

Hi!  I know it's been a while since I last wrote.  The past week or so has just flown by.  I hope you all had a wonderful Easter.  Our Easter service Sunday was a true blessing - the best Easter service I have ever attended.  The music was incredible, the pastor gave a truly inspiring sermon.  Our pastor has been with the church only since December and I wasn't sure about him.  I like him and his wife very well as people, but the sermons have left me wanting more.  Not now!  And the music raised the hair on your arms.  I'm really glad I went.

I had to make a decision as to whether to go to church or not Sunday when K didn't get out of bed.  I hated leaving him there, but I really wanted to go.  And, after the no-holds barred pep talk and Caregiver Bill of Rights I received from the coordinator of a new support group I went to last week, I really felt like I could go without him and I wasn't being mean or selfish.  I reminded him every 10 minutes or so as I got ready that I had to leave at 8:40 and I'd like him to go with me, but he had to get up and get ready - in a nice tone of voice.  And when I had to leave, I gave him a kiss and told him I would see him after church.  When I got back home he was still in bed and wanted to send me on a guilt trip, but I just hugged him, told him about church and went in to fix him breakfast.  So, I was pleased with how that went.

from A Caregiver's Bill of Rights:
     "I have the right:  to maintain facets of my own life that do not include the person I care for, just as I would if he were healthy.  I know that I do everything that I reasonably can for this person, and I have the right to do some things for myself.

Matt, Jackie, Emmy, Mom and Donna came over for dinner.  Emmy hunted candy-filled eggs we had hidden just before they got here.  Unfortunately, Max, the dog, started the hunt early!  He thought he had gone to doggy heaven when he stole an egg, took it back to the bedroom, and ate the candy out of it - paper and all!   That "dirty ole egg-eatin' dog," spent the rest of the day looking under every chair and table leg looking for more loot and growling at the coffee table.  Unfortunately, he was caught after the first one and didn't get any more!  Darn dog.  We had a great time.  After everyone left, K went out for his "walk."  I was busy doing dishes and the first thing I knew he had been outside for longer than I liked.  Usually he is just standing in the driveway.  But when I went out he was no where to be seen.  I jumped in the car and drove his usual route and didn't find him.  As I pulled back up to the house, to my relief, he was at the garage door.  I don't know how I missed him, but we agreed no more after dark walks.

K started on Namenda two weeks ago.  The neurologist thinks I should see some improvement in K's behavior on Namenda.  He will start week 3 of a 4 week titration pack in a couple of days.  So far, I'm not really seeing much difference except he is more agitated than ever in the evening (starting about 4p).  He talks so fast and at such a high pitch sometimes that I can't even understand the words.  DD told me that that is called "Push talking" and he is actually thinking so fast and trying to get out his thoughts so fast that his mouth can't keep up.  His sleep habits seem to be changing as well.  He stays in bed until 11a most mornings.  (I asked the lady who gave the talk at the support group about it and she said "accept it."  I guess it just goes along with all the rest of it.)  He's been waking up during the night more often as well.

The good things I have noticed since he started on the Namenda - Sunday after everyone left, K actually helped me clean up.  He picked up glasses and cups around the room and brought them into the kitchen for me to clean.  He hasn't done that type of thing in a while.  He also brought me a cup of coffee the other day.  His mood seems more stable and he isn't badgering me the way he was there for a time.  Hopefully these are indications that the Namenda is working.

I attended a new support group this past week.  It meets the 1st and 3rd Friday of the month at a church a couple of miles from the house.  There were 10-12 people attending and a woman whose mother also has FTD gave a talk on dementia and how to achieve a more cooperative result from the person who is receiving care and a little different thought process to approach care giving.  She had some very good insight into the viewpoint of the patient and ways to better understand why the person might be doing what they are doing.  Her handouts helped to illustrate practical ways to apply the concepts she was teaching.  I said the coordinator had a no-holds barred attitude and boy did she.  When we went around the circle to talk about our situation, she introduced me and then asked me what had I done to prepare myself for care giving and surviving our situation.  She reminded me that 50% of caregivers die before the patient and then handed the conversation to me.  Thank goodness I had some good answers for her.  And thank God that I do have many of the fundamental tasks taken care of.  She asked and I was able to answer - power of attorney for health care, poa for financial, advance directive, living will, etc.  Those things are all in place and I feel so fortunate that we did them before we got to this point.  The question I didn't do as well on - I don't get as much time for myself as I need to, but I'm working on it.  Support groups are so very important and I hope I've found one that fits my needs.

Another advance to report on - I've been in contact with my massage therapist's sister who does in home dementia care.  She came by one day last week so that we could meet and I hope that she will work out. K seems to like her and is looking forward to seeing her again.  She just lost a patient she had been working with for 4 years, so she has some time available.  I want to start with just a couple of hours once or twice a week until I feel more comfortable with her.  She likes to take people out for coffee or to go where they like to go.  She talked to K about going to the driving range and maybe teaching her to hold the club right and hit balls.  He perked up at that.  Her last patient was a airforce pilot and he liked to go to the airport and watch planes land and take off.  She tries to tailor the activities to the interests of the person.  I hope that she works out and that we can have a long term relationship with her.  She is certified for dementia care and works through an agency as well as a few private patients and has also worked at memory care units. I'm feeling pretty good about this, but I'm anxious to check out her referrals and get started.

Well, that's it for now.  Love and Peace to all.  Mary