Things have been quite good since my last post. Encouraging.
Last night Sandi and I "interviewed" Tasha Higgins as a in-home daytime care provider. Of course that may not be what Sandi thought we were doing.... Tasha was recommended to us by the Relief Society President. She is 31, single and a life-long member. Grew up in the area, went to Ricks (graduated the last year it was really Ricks) and has been working in the local area since. Just got laid off. She is a very personable and caring 'young' lady. Of note, she has an older sibling that has had a disability for as long as Tasha can remember, so dealing with challenges, including communications difficulties, isn't new. I felt good, very good in fact, with the interview. She and Sandi are going to do a 'trial' starting today...but the one being 'tried' is Sandi. This is going to be more of a challenge to her than to Tasha. Tasha will come at 10am and stay until 3pm, including lunch. That is signficant since I've been coming home to do that and, with my flex schedule (nominally 4x9 8 and then 4x9 in a pay period) means that I was doing 10 hour days. Since I'm still paying back for last week, I will work Friday. Long story: Wed-Friday this week are the trial period. Then off Monday and we'll see about the next week. I'm sure there will be adjustments but Tasha seems flexible enough to adapt--hopefully Sandi will see the need for all this.
Then there was last night....she had a rash of visits to the bathroom which aren't the uncommon part...but when she comes to my side of the bed at 0430 and asks for help it got weird. Not help finding the bathroom (she STILL hasn't got the geography of the apartment down) but she wanted help with the process..yes, what do I do--to the detail of "pull down pants" and when to wipe. I'm sure this is probably more than some of you want to know, but when it gets to this point you know that full-time professional care is no longer an 'if' but a when. I didn't mind what happened last night. It would almost be humorous if it wasn't so sad. I told some of you that the second day here she waited until I got home for lunch to ask me to show her how to run the shower (it IS different than what she is used to in VA)--but the important thing to remember is that the day previous she figured it out...and every day since, although I would go home at lunch wondering whether she would be in her gown waiting for me to help with the shower or dressed. It only happened once, but it was an eye-opening experience when it happened. That incident is what solidified my plan to make almost everything a 'routine' so she could learn and depend on it. That seems to be working. My only fear with bringing Tasha into the mix is the possible disruption of the routine. Hopefully she and Sandi can establish their own. enough for now....keep your fingers crossed for the 'experiment' today.
Wednesday, June 30, 2010
Monday, June 28, 2010
Travels with Sandi
Introduction:
6/28/2010. On the way to work this morning I decided to do this. It is an attempt to document the good, the bad and the otherwise of my life with my dear wife Sandi and our constant companion, her “early onset dementia.” Yes, it seems like it has become a third, most unwanted partner in our lives. It is always there and totally unpredictable—but that’s not right, the one thing in our lives that IS predictable is that this cruel disease will intrude into our lives somehow. Some days will be bad, some worse and some liveable. I’m trying to be positive, but won’t promise what I can’t deliver.
6/28/2010—Last Weekend:
One of the things I’ve been trying to do since we arrived here in Huntsville, is to provide a lot of structure in Sandi’s life. Understandably, this move was a significant disruption in her life—and when her world was as small as it already was, that is a problem. I’m trying to make the routine of everyday life just that, routine and predictable, so that she has a reduced level of stress (me too!) To balance that (boringness) we began talking about not only our almost every night trips somewhere (store, food) but also our weekend trips. I promised going somewhere every weekend—not just a shopping trip, but somewhere ‘exciting’, this is a new area for her. We had planned this past weekend out and I thought she was looking forward to it.
The weekend began Friday night with dinner out with new friends. Marc Roese is someone I’ve known about a year at work. He lives here with his wife Gwen and this was an opportunity for Sandi to meet them. FYI: Marc got caught in the same SRA layoffs so is looking and the possibility is that Gwen might be a candidate for in-home care for Sandi. So there were ulterior motives Sandi didn’t know about. Unfortunately she spent the evening just trying to figure out who these people were. It is complicated by the fact that we have a son named Mark and Sandi was thoroughly confused every time I mentioned the name. Marc and Gwen live in Decatur which is about 15 miles west of Madison where we live and the drive took us over the Tennessee River which Sandi liked. We met them at a GOOD BBQ place and then we followed them to their house. Good pleasant conversation, but Sandi spent the entire time, as I indicated, just trying to figure out who these people were. Typical communications issues—forgetting words, struggling with concepts, struggling with past history (stories horribly mixed up). Just as we were leaving we recommended a bathroom break and she succeeded in locking herself in the bathroom—so Gwen saw firsthand what she would be dealing with.
Saturday morning we had planned to first take a trip to find the ‘better mall’ in Huntsville that Gwen gave us direction for…we got up and left OK, took a wrong turn so decided to stop by my work instead. It was in the parking lot that Sandi started bemoaning missing Ben, Amy, Amanda, John—and of course Cassie. Tears, sobs and worse. She just does NOT understand that she cannot be near them and me at the same time. It got bad and finally I just said (shouldn’t have!) that she had to chose. She said she would chose them….. I turned around and headed back to the apartment. I was devastated, mad, frustrated, pick the emotion. We got there and I called Amanda so she could put Benjamin on the phone. That seemed to calm her down some. Then she started complaining about a headache so I gave her some EXCEDRIN and put her down on the bed. I needed a break. ½ hour later she was up and had largely forgotten all about the tantrum. I decided to do the same…preserves sanity!
We headed out to our primary destination—Tuscumbia (Helen Keller birthplace) and Florence (home of the closest Texas Roadhouse). The drive was pleasant though somewhat boring. Once we found Ivy Green and went on the tour, she was fine. ASIDE: not sure she remembered who Helen Keller was that much, but who cares. Very pleasant tour, Sandi bought the tee shirt to prove we were there. Actual highlight if you ask her was stopping off across the street where a young girl (?8?) was sitting with her Mom and Grandpa selling lemonade. Cute entrepreneur and Sandi has already mentioned it to several people. Who cares about Helen Keller when you can remember the lemonade girl!
We then found our way to Florence and eventually the Texas Roadhouse. Not only great food but it was familiar surroundings! Talked to the manager urging they open one in Huntsville/Madison—they’re planning to! Then headed home—in and out of driving rain. Bottom line: pleasant trip all the way through! Got home, talked with the NYC crew and started preparing her for Church the next day. It was my (desperate) hope that this would prove to be another “anchor” of normalcy—something else to look forward to. Picking out clothes was a struggle, but we got it done and she went to bed.
Sunday. Couldn’t have been better. Sandi was nervous, as you can imagine. “Don’t know anyone.” Contingency plans to just go to Sacrament meeting. We get there and sit down and a nice couple with 2 young kids sit in front of us—perfect. Conversation starts and the bond begins…Counselor in the Bishopric stops before the meeting and welcomes Sandi to the Ward, then the HP Group Leader stops and introduces himself. Meeting was good and off to Sunday School (“it is in the RS Room so you don’t have to move from here on out.”) The sweet Sister from Sacrament Meeting sits down on the other side of Sandi and the bonding continues. After Sunday School, the RS President stops by and we get a chance to talk—she is going to arrange for visits…HOORAY! ASIDE: think she is overwhelmed, but we’ll work on that. Could NOT have asked for a better result. Sandi lasted the whole 3-hour block, she spent the rest of the day—including conversations with family—raving about how much better she felt…and I got a chance to introduce her to the concept of people (in the guise of Visiting Teachers!) coming regularly to visit her. We went home, changed and ate lunch. Then a nap (more on that later) and then we decided to try to go out and find that ‘other mall’. Success—it even has a Carrabas! We also located the K-Mart and set a ‘date’ for Monday to go buy her some shoes—then we decided to go to my favorite Chinese Buffet for dinner. Just before we got there Benjamin called to say they arrived in VA…had a good talk in the parking lot. Sandi liked the food and so all was right with the world. Home, TV for a while and then the ‘tired’ dilemma. It is a constant balancing act with naps, early bed and the inevitable early rising. If I let her go to bed before 10pm and/or let her take too long of a nap (this is the weekend when I can monitor such things) then she is up early and the ‘bored’ cycle starts right up. If I keep her up, etc, then I can get her up in the morning, give her breakfast, her pills and she goes back to bed. Every day a new challenge. The thing that makes me feel bad is that the time after she goes to bed is so much less stressful for me…………I feel bad that I am being selfish putting her to bed so I can have that ‘me’ time. But otherwise I we watch TV (and at least one of us understands what is going on…) Talk is difficult and doing something else is painfully difficult. She is now struggling to read. She is now not that interested in her laptop…most of what she read confuses her or upsets her (can’t handle stressful or confusing emails). So evenings are a challenge…hence our ‘trips’. Just traveling to K-Mart tonight will be a useful excursion given the alternative.
The highlight of the evening was Julie calling. I got a chance to talk and convey the situation and then Sandi ‘talked’ to her….and yes, the lemonade girl story got told again…but also the positive experience at Church which is very encouraging that she volunteered that. Then TV and ‘tired’ by 9pm.
Bottom line: the weekend had a monstrous low point Saturday morning, but everything after that has been on the up-slope and we ended up on a positive note. But here I sit Monday morning wondering how she is doing…..one part of me is saying that the only course of action is ‘day-care’ for her safety and to give her ‘things to do’….but the other part of me screams that I am abandoning her to someone else’s care. Cost is NOT the issue….I’ll figure that out. It is an emotional issue more than anything. I struggle to compartmentalize my life into “work” vs “Sandi” ….and worry about shorting the “work” and risking that….and then there is ‘time for me’…..and the guilt associated with that. If there was an “us” in there, I’d be OK, but I can’t live in her ‘world’ and retain my sanity. Just have to almost become a ‘parent’ both for her sake and mine. Having difficulty dealing with that. End for now.
Introduction:
6/28/2010. On the way to work this morning I decided to do this. It is an attempt to document the good, the bad and the otherwise of my life with my dear wife Sandi and our constant companion, her “early onset dementia.” Yes, it seems like it has become a third, most unwanted partner in our lives. It is always there and totally unpredictable—but that’s not right, the one thing in our lives that IS predictable is that this cruel disease will intrude into our lives somehow. Some days will be bad, some worse and some liveable. I’m trying to be positive, but won’t promise what I can’t deliver.
6/28/2010—Last Weekend:
One of the things I’ve been trying to do since we arrived here in Huntsville, is to provide a lot of structure in Sandi’s life. Understandably, this move was a significant disruption in her life—and when her world was as small as it already was, that is a problem. I’m trying to make the routine of everyday life just that, routine and predictable, so that she has a reduced level of stress (me too!) To balance that (boringness) we began talking about not only our almost every night trips somewhere (store, food) but also our weekend trips. I promised going somewhere every weekend—not just a shopping trip, but somewhere ‘exciting’, this is a new area for her. We had planned this past weekend out and I thought she was looking forward to it.
The weekend began Friday night with dinner out with new friends. Marc Roese is someone I’ve known about a year at work. He lives here with his wife Gwen and this was an opportunity for Sandi to meet them. FYI: Marc got caught in the same SRA layoffs so is looking and the possibility is that Gwen might be a candidate for in-home care for Sandi. So there were ulterior motives Sandi didn’t know about. Unfortunately she spent the evening just trying to figure out who these people were. It is complicated by the fact that we have a son named Mark and Sandi was thoroughly confused every time I mentioned the name. Marc and Gwen live in Decatur which is about 15 miles west of Madison where we live and the drive took us over the Tennessee River which Sandi liked. We met them at a GOOD BBQ place and then we followed them to their house. Good pleasant conversation, but Sandi spent the entire time, as I indicated, just trying to figure out who these people were. Typical communications issues—forgetting words, struggling with concepts, struggling with past history (stories horribly mixed up). Just as we were leaving we recommended a bathroom break and she succeeded in locking herself in the bathroom—so Gwen saw firsthand what she would be dealing with.
Saturday morning we had planned to first take a trip to find the ‘better mall’ in Huntsville that Gwen gave us direction for…we got up and left OK, took a wrong turn so decided to stop by my work instead. It was in the parking lot that Sandi started bemoaning missing Ben, Amy, Amanda, John—and of course Cassie. Tears, sobs and worse. She just does NOT understand that she cannot be near them and me at the same time. It got bad and finally I just said (shouldn’t have!) that she had to chose. She said she would chose them….. I turned around and headed back to the apartment. I was devastated, mad, frustrated, pick the emotion. We got there and I called Amanda so she could put Benjamin on the phone. That seemed to calm her down some. Then she started complaining about a headache so I gave her some EXCEDRIN and put her down on the bed. I needed a break. ½ hour later she was up and had largely forgotten all about the tantrum. I decided to do the same…preserves sanity!
We headed out to our primary destination—Tuscumbia (Helen Keller birthplace) and Florence (home of the closest Texas Roadhouse). The drive was pleasant though somewhat boring. Once we found Ivy Green and went on the tour, she was fine. ASIDE: not sure she remembered who Helen Keller was that much, but who cares. Very pleasant tour, Sandi bought the tee shirt to prove we were there. Actual highlight if you ask her was stopping off across the street where a young girl (?8?) was sitting with her Mom and Grandpa selling lemonade. Cute entrepreneur and Sandi has already mentioned it to several people. Who cares about Helen Keller when you can remember the lemonade girl!
We then found our way to Florence and eventually the Texas Roadhouse. Not only great food but it was familiar surroundings! Talked to the manager urging they open one in Huntsville/Madison—they’re planning to! Then headed home—in and out of driving rain. Bottom line: pleasant trip all the way through! Got home, talked with the NYC crew and started preparing her for Church the next day. It was my (desperate) hope that this would prove to be another “anchor” of normalcy—something else to look forward to. Picking out clothes was a struggle, but we got it done and she went to bed.
Sunday. Couldn’t have been better. Sandi was nervous, as you can imagine. “Don’t know anyone.” Contingency plans to just go to Sacrament meeting. We get there and sit down and a nice couple with 2 young kids sit in front of us—perfect. Conversation starts and the bond begins…Counselor in the Bishopric stops before the meeting and welcomes Sandi to the Ward, then the HP Group Leader stops and introduces himself. Meeting was good and off to Sunday School (“it is in the RS Room so you don’t have to move from here on out.”) The sweet Sister from Sacrament Meeting sits down on the other side of Sandi and the bonding continues. After Sunday School, the RS President stops by and we get a chance to talk—she is going to arrange for visits…HOORAY! ASIDE: think she is overwhelmed, but we’ll work on that. Could NOT have asked for a better result. Sandi lasted the whole 3-hour block, she spent the rest of the day—including conversations with family—raving about how much better she felt…and I got a chance to introduce her to the concept of people (in the guise of Visiting Teachers!) coming regularly to visit her. We went home, changed and ate lunch. Then a nap (more on that later) and then we decided to try to go out and find that ‘other mall’. Success—it even has a Carrabas! We also located the K-Mart and set a ‘date’ for Monday to go buy her some shoes—then we decided to go to my favorite Chinese Buffet for dinner. Just before we got there Benjamin called to say they arrived in VA…had a good talk in the parking lot. Sandi liked the food and so all was right with the world. Home, TV for a while and then the ‘tired’ dilemma. It is a constant balancing act with naps, early bed and the inevitable early rising. If I let her go to bed before 10pm and/or let her take too long of a nap (this is the weekend when I can monitor such things) then she is up early and the ‘bored’ cycle starts right up. If I keep her up, etc, then I can get her up in the morning, give her breakfast, her pills and she goes back to bed. Every day a new challenge. The thing that makes me feel bad is that the time after she goes to bed is so much less stressful for me…………I feel bad that I am being selfish putting her to bed so I can have that ‘me’ time. But otherwise I we watch TV (and at least one of us understands what is going on…) Talk is difficult and doing something else is painfully difficult. She is now struggling to read. She is now not that interested in her laptop…most of what she read confuses her or upsets her (can’t handle stressful or confusing emails). So evenings are a challenge…hence our ‘trips’. Just traveling to K-Mart tonight will be a useful excursion given the alternative.
The highlight of the evening was Julie calling. I got a chance to talk and convey the situation and then Sandi ‘talked’ to her….and yes, the lemonade girl story got told again…but also the positive experience at Church which is very encouraging that she volunteered that. Then TV and ‘tired’ by 9pm.
Bottom line: the weekend had a monstrous low point Saturday morning, but everything after that has been on the up-slope and we ended up on a positive note. But here I sit Monday morning wondering how she is doing…..one part of me is saying that the only course of action is ‘day-care’ for her safety and to give her ‘things to do’….but the other part of me screams that I am abandoning her to someone else’s care. Cost is NOT the issue….I’ll figure that out. It is an emotional issue more than anything. I struggle to compartmentalize my life into “work” vs “Sandi” ….and worry about shorting the “work” and risking that….and then there is ‘time for me’…..and the guilt associated with that. If there was an “us” in there, I’d be OK, but I can’t live in her ‘world’ and retain my sanity. Just have to almost become a ‘parent’ both for her sake and mine. Having difficulty dealing with that. End for now.
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