Tuesday Travels
Today was Tuesday - better known as old retirees golf day. I had an opportunity to talk to Scott today at the golf course and got the word from the group. Poor Scott was so uncomfortable telling me that they have decided that they are not going to call K every time (that is, email him) they play, but would call him from time to time. He said K is not really able to play golf very much - he doesn't know the rules any more, doesn't know which group he is supposed to be with and isn't able to keep his attention on the game. I suspected that would be the case and I appreciated Scott letting me know. He said it is very stressful to have K play with them. I told him I understand and I do. It's just another loss to face. It is so hard to loose him just a piece at a time. He's been pestering me to let him buy a new set of irons - I don't think so. It will be surprising if he even plays out the rest of the golf season. I was sitting out in the parking lot of the golf course, reading and sketching, even though I knew it was way too early for them to have finished 18. But I forgot my phone this morning and didn't want K to worry about where I was. Sure enough, I only waited about 15 minutes when he showed up. They had played 9 holes and that was enough for him. He looked exhausted and it isn't even hot outside yet. He continues to walk obsessively back and forth in front of the house, so he is getting some exercise. He still won't let me go with him, but I think he will allow it sometime. I'll just have to be patient.
We are leaving Thursday to go to Nashville for a couple of days. I hope we get to see a show, but I know how the trip to Pennsylvania went - we got there and he wanted to come home. We'll play it by ear - not that there is any other way to play it! Plans can be swept away if he refuses to do something. One plan that I think will hold his interest is our plan to visit Lebanon, Tn, where we hope to find the 8 foot granite monument to David Wilson, an ancestor who died in 1804 and from whom Wilson County gets its name. Promise to post pictures if we find it! I'm also thinking we could drive out to Gallatin, TN to see the Wilson family cemetery. It is someone's backyard - something we found to be very common when we were living there. Of course, we'll have to look up our old house - off of Wilson Pike in Brentwood. Wilson, Wilson everywhere!
I finally talked to Cheryl again - our soon to be companion and friend. I got two glowing referrals from her, after a little confusion! I'm looking forward to starting off with her as soon as we get back from Nashville.
I've got a really good idea for Father's Day or for K's birthday. I've been researching the medals/ribbons he actually would have received or been eligible for and I am planning to have a presentation frame made up for him. If any of you kids would be interested, I would be happy to make it a family gift to him. I think he will be very excited and touched. (of course, the medal of honor will have to be missing, but you can't just go out and buy that thing at Target! ha ha ;-) He did tell me the other day that when he got home after he was discharged that he dumped his marine coat and it's medals in a trash can at the airport. It actually rang true. That probably wouldn't have been such an unusual thing at that period of history. Who knows at this point?
Love and peace, Mary
Tuesday, April 24, 2012
Friday, April 20, 2012
Again, it's been a while. I've gotten somewhat discouraged the past few days and didn't really want to share with you all so much. But, discouragement is another aspect of this life we are living. It seems that everytime I start to see some progress in our schedule that might provide me with some respite, it's one step forward and two steps back.
I was so excited about C, the potential companion for K. She was scheduled to come for the first time on the 12th - when I spoke with her on the evening of the 11th, I asked her to bring the referrals she had offered the first time we spoke. I didn't hear from her again until Wed. night. She dropped off the referrals yesterday - but I have some definite concerns now. One of the letters is unsigned, on plain paper from the Director of Social Work at Huron Woods Assisted Living. After I verified the phone number actually was Huron Woods, I called and got voice mail that gave the right name. I left a message and I so hope he calls me back. The other paper she brought was the second page of a letter she had obviously written to the family of a patient who had passed away, telling stories of times she had shared with the patient. Nice, but not a referral. I don't know.
I've also been discouraged by the Namenda trial. K now sleeps longer and longer, but when he gets up he is HYPERactive. VERY HYPER. Talks literally without stopping - hardly to breathe. Goes on walks dozens of times a day. Counts tires on cars going by - out loud. Nothing at all holds his attention for more than 30 seconds at a time. I had a hyper child once (Love you!), and I didn't do well with the situation. I'm not doing well this time either. I feel like the kinetic energy he exudes sucks my energy into a vortex. My nerves are shot, my head is hurting and I am trying to be patient. It certainly isn't his fault - damn disease. I told him he was driving me crazy and he said - "That ship has already sailed!" Oh boy, he's got that right. I need a pill! He needs a pill! I have a call into his neurologist to let her know the Namenda seems to be a problem. But, I haven't heard back yet. And of course, his 3 month supply of the stuff came in the mail yesterday! Gee Whiz! (and I'm starting to sound like Beaver Cleaver!) What a mess.
Yesterday was K's first day of golf for the season. I'm not quite sure what happened, but he only played 9 holes and then called me to come get him. The rest of the guys went on to play the back nine. I can't get the story straight - each time he talks about it I get a different version. I can't tell if it was his idea to leave early or if someone might have encouraged him to leave early. He seemed unsettled by the situation, but wasn't able to vocalize what had him unsettled. I didn't belabor the story - no point in making a situation bigger than it might be. If there was a problem of any kind, hopefully one of his friends will let me know. He may have just lost interest or gotten tired. BTW, the golf course was on the Redford/Detroit city line. It looked nice enough and K said it was nice, but it was a little disconcerting when I realized that the "fireworks" I was hearing was actually gunfire from the shooting range across the street - hundreds of shots! Evidently the police academy training range was there. I wasn't sure if that made it safer (lots of potential officers nearby) or more dangerous (lots of inexperienced shooters nearby). But everyone seemed to be whole and not leaking anywhere!
We are thinking about driving down to Nashville next week and checking out our old stomping grounds. K wants to go to Gulf Shores, but that is just too far for me to drive, especially with the nonstop sound track. Hopefully the compromise will satisfy him. Yesterday after golf he said he wasn't going to take his clubs, but today he is saying again he wants to play the Robert Trent Jones trail course in Birmingham. Again, he says that playing Carnton in Franklin will be fine sometimes, and other times he insists we're going to Birmingham. I know he wants to relive good memories of playing with B in Alabama, but the reality doesn't live up to his daydreams. He does get frustrated when he can't do what he thinks he can. God love him, I can't imagine what that realization must be like for him. Thank God, it only comes in glimpses for him and isn't a constant in his life.
Sorry for the whining - I may indeed need a little cheese with that wine. Tomorrow will be better....or at least different.
Love and Peace to all, Mary
I was so excited about C, the potential companion for K. She was scheduled to come for the first time on the 12th - when I spoke with her on the evening of the 11th, I asked her to bring the referrals she had offered the first time we spoke. I didn't hear from her again until Wed. night. She dropped off the referrals yesterday - but I have some definite concerns now. One of the letters is unsigned, on plain paper from the Director of Social Work at Huron Woods Assisted Living. After I verified the phone number actually was Huron Woods, I called and got voice mail that gave the right name. I left a message and I so hope he calls me back. The other paper she brought was the second page of a letter she had obviously written to the family of a patient who had passed away, telling stories of times she had shared with the patient. Nice, but not a referral. I don't know.
I've also been discouraged by the Namenda trial. K now sleeps longer and longer, but when he gets up he is HYPERactive. VERY HYPER. Talks literally without stopping - hardly to breathe. Goes on walks dozens of times a day. Counts tires on cars going by - out loud. Nothing at all holds his attention for more than 30 seconds at a time. I had a hyper child once (Love you!), and I didn't do well with the situation. I'm not doing well this time either. I feel like the kinetic energy he exudes sucks my energy into a vortex. My nerves are shot, my head is hurting and I am trying to be patient. It certainly isn't his fault - damn disease. I told him he was driving me crazy and he said - "That ship has already sailed!" Oh boy, he's got that right. I need a pill! He needs a pill! I have a call into his neurologist to let her know the Namenda seems to be a problem. But, I haven't heard back yet. And of course, his 3 month supply of the stuff came in the mail yesterday! Gee Whiz! (and I'm starting to sound like Beaver Cleaver!) What a mess.
Yesterday was K's first day of golf for the season. I'm not quite sure what happened, but he only played 9 holes and then called me to come get him. The rest of the guys went on to play the back nine. I can't get the story straight - each time he talks about it I get a different version. I can't tell if it was his idea to leave early or if someone might have encouraged him to leave early. He seemed unsettled by the situation, but wasn't able to vocalize what had him unsettled. I didn't belabor the story - no point in making a situation bigger than it might be. If there was a problem of any kind, hopefully one of his friends will let me know. He may have just lost interest or gotten tired. BTW, the golf course was on the Redford/Detroit city line. It looked nice enough and K said it was nice, but it was a little disconcerting when I realized that the "fireworks" I was hearing was actually gunfire from the shooting range across the street - hundreds of shots! Evidently the police academy training range was there. I wasn't sure if that made it safer (lots of potential officers nearby) or more dangerous (lots of inexperienced shooters nearby). But everyone seemed to be whole and not leaking anywhere!
We are thinking about driving down to Nashville next week and checking out our old stomping grounds. K wants to go to Gulf Shores, but that is just too far for me to drive, especially with the nonstop sound track. Hopefully the compromise will satisfy him. Yesterday after golf he said he wasn't going to take his clubs, but today he is saying again he wants to play the Robert Trent Jones trail course in Birmingham. Again, he says that playing Carnton in Franklin will be fine sometimes, and other times he insists we're going to Birmingham. I know he wants to relive good memories of playing with B in Alabama, but the reality doesn't live up to his daydreams. He does get frustrated when he can't do what he thinks he can. God love him, I can't imagine what that realization must be like for him. Thank God, it only comes in glimpses for him and isn't a constant in his life.
Sorry for the whining - I may indeed need a little cheese with that wine. Tomorrow will be better....or at least different.
Love and Peace to all, Mary
Tuesday, April 10, 2012
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.
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
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
Subscribe to:
Comments (Atom)