Wednesday, November 14, 2012
Good News
On October 25th Daddy was moved to another temporary psychiatric hospital because he was acting out aggressively again towards the staff of the nursing home. The administrator was incredibly nice about the whole thing. He said he wanted to get Dad's meds sorted out before it got to be too out of control. They promised me that his room would be waiting for him when he was ready to come back. He was moved to Arlington and stayed for 13 days. When I called to check on him a day before he was set to be transferred back to the nursing home the nurse gave me the incredible news that he had started walking again! : D Apparently the doctors were able to find a good combination for his meds and it has really made a big difference. I went to see him at the nursing home last Wednesday which was his first day back. He recognized me right away! I've been back twice since then and he's known me each time. He doesn't know my name, but he knows I'm his daughter. He's walking a little, which is wonderful, but I'm more happy that he knows me again. When it was time to leave the other day I told him to try hard not to forget me again. He said that he sure would try because I'm his favorite person and he doesn't ever want to forget me again. I'm cautiously optimistic, but as of right now - today - I have my Daddy back a little bit.
Sunday, September 30, 2012
Quick Update
Hey y'all. I am good. Timothy is good. Boys are good. Dad isn't so good, but then maybe he is.
The boys are both enjoying school. I have never seen Owen so excited about going to school every day. He really likes his Pre-K class. He is learning a lot and having a blast. He misses his old teacher from the 3 year old class and we normally have to stop and say hi to her every afternoon before we leave. He's been learning a lot about what words start with which letter and matching up the sounds. He knows some sight words too, but it's like pulling teeth to get him to tell me, so I'm not really sure how much he knows. That kid has layers like an onion and it's just hard to tell what is going on in his head.
Collin doesn't talk too much about school, but he seems to like it just fine. We have both had to adjust to his new 1st Grade teacher being not as involved as last year's teacher. I'm not sure if it's just a difference in personalities or just that they expect the kids to be more grown up this year, or maybe both. His kindergarten teacher was wonderful about communicating with me all the time. She would email and call to just let me know funny things Collin did in class that day. This new teacher has been nice, just different. Collin started his gifted and talented classes a few weeks ago. The group of GT students was all put into the same class this year after being identified last year. We are hopeful that this will give Collin more of a challenge than he had last year when he was always stood out so much in his class.
I think Daddy is pretty much done with remembering who I am. It's pretty sad, but it's a comfort to see that mentally he's in a happier place. Most days I would prefer for him to be happy and not remember me than to remember me but to be angry and upset all the time. Most days. There are some days I would like it the other way around, but I know this is what's best for him. He doesn't remember that I'm his daughter, and he doesn't remember my name, but he knows I love him and that he loves me. If that's the last thing that he can hold on to then I'm good with that. He is always happy to see me because he's happy to see anybody. He likes company and he likes talking to people so he isn't picky about who comes to see him.
I am still really enjoying Karate. I like to count my battle wounds and show them off to impress my friends. But mostly I like the feeling that I'm learning and getting better and doing cool stuff that a year ago I would have not thought possible. For example, not passing out during class was a big relief to me. :-)
This concludes my brief update. You may now return to your life, but thanks for visiting mine.
The boys are both enjoying school. I have never seen Owen so excited about going to school every day. He really likes his Pre-K class. He is learning a lot and having a blast. He misses his old teacher from the 3 year old class and we normally have to stop and say hi to her every afternoon before we leave. He's been learning a lot about what words start with which letter and matching up the sounds. He knows some sight words too, but it's like pulling teeth to get him to tell me, so I'm not really sure how much he knows. That kid has layers like an onion and it's just hard to tell what is going on in his head.
Collin doesn't talk too much about school, but he seems to like it just fine. We have both had to adjust to his new 1st Grade teacher being not as involved as last year's teacher. I'm not sure if it's just a difference in personalities or just that they expect the kids to be more grown up this year, or maybe both. His kindergarten teacher was wonderful about communicating with me all the time. She would email and call to just let me know funny things Collin did in class that day. This new teacher has been nice, just different. Collin started his gifted and talented classes a few weeks ago. The group of GT students was all put into the same class this year after being identified last year. We are hopeful that this will give Collin more of a challenge than he had last year when he was always stood out so much in his class.
I think Daddy is pretty much done with remembering who I am. It's pretty sad, but it's a comfort to see that mentally he's in a happier place. Most days I would prefer for him to be happy and not remember me than to remember me but to be angry and upset all the time. Most days. There are some days I would like it the other way around, but I know this is what's best for him. He doesn't remember that I'm his daughter, and he doesn't remember my name, but he knows I love him and that he loves me. If that's the last thing that he can hold on to then I'm good with that. He is always happy to see me because he's happy to see anybody. He likes company and he likes talking to people so he isn't picky about who comes to see him.
I am still really enjoying Karate. I like to count my battle wounds and show them off to impress my friends. But mostly I like the feeling that I'm learning and getting better and doing cool stuff that a year ago I would have not thought possible. For example, not passing out during class was a big relief to me. :-)
This concludes my brief update. You may now return to your life, but thanks for visiting mine.
Tuesday, August 21, 2012
Flash Back to Feburary
There are a lot of things I have wanted to write about on this blog but then for whatever reason it just didn't happen. This one though, I actually uploaded pictures specifically for this post and then they wouldn't post and I got mad which apparently takes me 6 months to get over, so here we are!
Collin's school had a Valentine's Dance called the Party Hearty Dance. I never decided it the name was cute or annoying. They hyped this thing up so much at school that it was all he talked about for weeks. And oh how excited everyone was to find out that younger siblings could come too!
Finally the big night arrived and Collin suddenly decided that he and Owen should go in costume, because... why not?
I present Mario and Luigi!
They had the school divided in half with K through 2nd graders in the cafeteria and 3rd through 5th graders in the gym. Obviously no one was going to just drop off their kindergartener so the place was packed with parents and babies. I discovered that overalls come in very handy when you need to grab and steer a child through a mob.
It was like a Kidz Bop CD exploded in there. Lots of trendy pop songs with the lyrics changed to clean up as needed and all sang by kids. A few times I almost panicked because I knew the words to some of the songs and I knew when there should have been a swear coming, but then it didn't and the kids were none the wiser.
The popcorn was a big hit! Those PTA moms really know how to plan a party menu that is guaranteed to make your kids beg for money to buy snacks. I'm not really complaining. It was all very reasonably priced. We paid $6 to get in and spent probably $5 on snacks. Plus it was all going towards some kind of fundraiser for the school so I don't think you're even allowed to get mad at that.
They had a cute little set up to get pictures taken including props. So of course I had to pay another few bucks for that, but just try to tell me it wasn't worth it.
Of course my boys are the sweetest in the world so whenever I asked if they saw any girls they wanted to 'dance' with they just said they wanted to dance with me. :D So we did that a few times. It was a fun experience and I'm glad we went. I'm also glad they don't have these functions very often. :P
Collin's school had a Valentine's Dance called the Party Hearty Dance. I never decided it the name was cute or annoying. They hyped this thing up so much at school that it was all he talked about for weeks. And oh how excited everyone was to find out that younger siblings could come too!
Finally the big night arrived and Collin suddenly decided that he and Owen should go in costume, because... why not?
I present Mario and Luigi!
They had the school divided in half with K through 2nd graders in the cafeteria and 3rd through 5th graders in the gym. Obviously no one was going to just drop off their kindergartener so the place was packed with parents and babies. I discovered that overalls come in very handy when you need to grab and steer a child through a mob.
It was like a Kidz Bop CD exploded in there. Lots of trendy pop songs with the lyrics changed to clean up as needed and all sang by kids. A few times I almost panicked because I knew the words to some of the songs and I knew when there should have been a swear coming, but then it didn't and the kids were none the wiser.
The popcorn was a big hit! Those PTA moms really know how to plan a party menu that is guaranteed to make your kids beg for money to buy snacks. I'm not really complaining. It was all very reasonably priced. We paid $6 to get in and spent probably $5 on snacks. Plus it was all going towards some kind of fundraiser for the school so I don't think you're even allowed to get mad at that.
They had a cute little set up to get pictures taken including props. So of course I had to pay another few bucks for that, but just try to tell me it wasn't worth it.
Of course my boys are the sweetest in the world so whenever I asked if they saw any girls they wanted to 'dance' with they just said they wanted to dance with me. :D So we did that a few times. It was a fun experience and I'm glad we went. I'm also glad they don't have these functions very often. :P
Sunday, August 5, 2012
Daddy's Birthday
Daddy had his 78th birthday on July 28th. Thank you to everyone that sent him cards, he really enjoyed them. We went a few days early to celebrate with him since we would be out of town on his actual birthday. Timothy and the boys and I brought him a chocolate cake which he really enjoyed. He ate 3 pieces!
He was happy to see us and had a good time.
I finally was able to talk to his Nurse Practitioner about his CT Scan results. They determined that he did have a stroke. Although the test isn't able to give an exact time, I believe this happened in May and that was the cause of his decline. While it's possible that the stroke could have been brought on because of all the changes to his meds at that time, we don't know if that is the case and I don't see any point in trying to blame anyone. I'm just happy for whatever I can get with him now.
We also learned that Dad does not actually have Alzheimer's as we thought previously, but instead he has Vascular Dementia. The effect is still the same - memory loss and so forth, but the cause is different. In Dad's case the blood vessels in the brain are slowly shrinking providing less blood and oxygen. While there still isn't anything to be done it's nice to have a little more of an understanding of what is happening. Also, I'm grateful for the staff at this facility because they cared enough to run the test and find out what is going on with him.
He was happy to see us and had a good time.
I finally was able to talk to his Nurse Practitioner about his CT Scan results. They determined that he did have a stroke. Although the test isn't able to give an exact time, I believe this happened in May and that was the cause of his decline. While it's possible that the stroke could have been brought on because of all the changes to his meds at that time, we don't know if that is the case and I don't see any point in trying to blame anyone. I'm just happy for whatever I can get with him now.
We also learned that Dad does not actually have Alzheimer's as we thought previously, but instead he has Vascular Dementia. The effect is still the same - memory loss and so forth, but the cause is different. In Dad's case the blood vessels in the brain are slowly shrinking providing less blood and oxygen. While there still isn't anything to be done it's nice to have a little more of an understanding of what is happening. Also, I'm grateful for the staff at this facility because they cared enough to run the test and find out what is going on with him.
Sunday, July 15, 2012
Hello Again
I've been really sick all week. It's pretty gross. As a result I haven't been keeping up with stuff like I should. I've also been forgetting stuff a lot lately. There is just only so much that I can fit into my head before some starts falling out.
I talked to Dad's Nurse Practitioner about a week ago and she was concerned when I told her about his rapid decline. She had a few ideas about what may cause this and said she will get him scheduled for a CAT Scan soon to explore the options. He hasn't had any noticeable changes since he moved, and I'm still happy with the staff and care he's receiving.
In other news, I still haven't finished Dawson's Creek, but I'm almost there. These last two seasons are incredibly painful and I can completely understand why I stopped watching the show. I've spent the last week reading Ender's Game, which is probably only the second or third book I've read this year as embarrassing as that is. (Not counting audio books, those are much faster and require less concentration) I've had a problem for awhile now sitting still and doing just one thing, which makes reading a real book difficult. This book is came as a request to join my friend Karin in a book club. The plan is to get a group of us together and discuss the book and release it as a podcast.
In mental health news, my doctor convinced me that I really should be on some type of anti-depressant. Apparently crying at work several times a week is not ideal and I should not put myself through that. Neither is having disturbing nightmares that give you panic attacks. Huh. Who knew? So this mental patient has started taking Prozac. Why do they have to give me all the drugs that I've heard bad things about? I guess they wouldn't be popular if a lot of people hadn't used them with some success. So far the first day was the only time I had bad sad effects. It seems to be okay as long as I take it with food. I've even gone up to the real dose already and it was a smooth transition. I suppose only time will tell how this will work, but we are off to a much better start than the last one.
Couple cute kid stories to close you out.
Owen told Timothy, "You need to stop eating so many vegetables because you're taking up too much room!"
Collin was with me when I was shopping and bought deodorant for Timothy. For some reason he wanted to see what it smelled like, so he opened it up and sniffed and said, "Aargh! It smells like arm pit!"
Love those silly boys!
I talked to Dad's Nurse Practitioner about a week ago and she was concerned when I told her about his rapid decline. She had a few ideas about what may cause this and said she will get him scheduled for a CAT Scan soon to explore the options. He hasn't had any noticeable changes since he moved, and I'm still happy with the staff and care he's receiving.
In other news, I still haven't finished Dawson's Creek, but I'm almost there. These last two seasons are incredibly painful and I can completely understand why I stopped watching the show. I've spent the last week reading Ender's Game, which is probably only the second or third book I've read this year as embarrassing as that is. (Not counting audio books, those are much faster and require less concentration) I've had a problem for awhile now sitting still and doing just one thing, which makes reading a real book difficult. This book is came as a request to join my friend Karin in a book club. The plan is to get a group of us together and discuss the book and release it as a podcast.
In mental health news, my doctor convinced me that I really should be on some type of anti-depressant. Apparently crying at work several times a week is not ideal and I should not put myself through that. Neither is having disturbing nightmares that give you panic attacks. Huh. Who knew? So this mental patient has started taking Prozac. Why do they have to give me all the drugs that I've heard bad things about? I guess they wouldn't be popular if a lot of people hadn't used them with some success. So far the first day was the only time I had bad sad effects. It seems to be okay as long as I take it with food. I've even gone up to the real dose already and it was a smooth transition. I suppose only time will tell how this will work, but we are off to a much better start than the last one.
Couple cute kid stories to close you out.
Owen told Timothy, "You need to stop eating so many vegetables because you're taking up too much room!"
Collin was with me when I was shopping and bought deodorant for Timothy. For some reason he wanted to see what it smelled like, so he opened it up and sniffed and said, "Aargh! It smells like arm pit!"
Love those silly boys!
Wednesday, July 4, 2012
The Long Version Part 3
The trip to the hospital was on June 4. I forgot to mention that this was the day before I was scheduled to go back to work so I had a required doctor's appointment that day because I had to be cleared to go back. My plan had been to go visit Dad for a bit then stop to get some lunch before go to the doctor. Luckily I left early. I ended up having to race home to get my Dad stuff (notebook with info and recent notes, Medicare/Medicaid cards, ID card and my Medical Power of Attorney form) and try to beat the ambulance to the hospital. I only had an hour before I had to leave to make it to my appointment and I didn't want to leave Dad. Thankfully my awesome cousins were able to come sit with Dad for a little while. I'll just let you imagine how my appointment went when my doctor asks me if I feel I'm ready to return to work. Also, during the previous 24 hours I had been the sickest to date (So sorry, Sa,) and I was really not well. I told the doctor I may as well go on back because I couldn't imagine when all this would become more manageable.
Going back to work sucked lemons. Not only did I have to seriously have to cut back on watching Dawson's Creek on Netflix, but I also had to talk to people. Gross! It was weird trying to figure out how to respond when people asked how I was doing. I ended up going with, "Well, I'm here." I figured most of them were probably happier not knowing how I was really doing. I spent a good chunk of my first couple of weeks back just crying at my desk and hoping no one would notice. One of my sweet friends who sits close to me would check on me frequently and prayed over me when it looked like I needed it. There are some people that you just know God puts in your life for a reason and she is one of those for me.
I had been trying for a couple of weeks to get the nursing home to set up an appointment for me to meet with Dad's doctor. Funny enough this is the same doctor he had at the first nursing home, but this is NOT a good thing. This doctor had refused to fill out paperwork for me to apply for FMLA to have time off work when I needed to do something for Dad. He had also flat-out refused to speak with me over the phone. I mean he was in the same room when I was talking to the secretary and just would not take the phone. Ass. So it was really no surprise that he didn't want to set up an appointment with me now. The nursing home compromised by setting up a care plan meeting where I get to talk to his nurses and physical therapist and social worker and the nutritionist. Pretty much everyone but the doctor. They also decided to move Dad out of the locked unit because some genius figured out that if he can't walk anymore his odds of escaping have been drastically reduced. So they made another mess of his belongings and piled stuff all over the place. Seriously, is it too much to ask to hang the pictures back up on the wall so he can have something familiar to look at? Apparently.
At the care plan meeting the nurse was flipping through his daily charts and trying to tell me how well he was doing. She casually mentioned that on June 6 it was noted that they suspected he had a urinary infection and the doctor had ordered lab tests to confirm. I was making a list of all the meds he was on so I asked which antibiotic he was put on and she checked and said there wasn't one. So she went to check the lab tests to see if maybe they were negative, but they weren't even there. They never did the test. Mind you, this meeting was on June 13, a week later. What the hell? I marched back into the Director's office and yelled a bit. He took me to the Director of Nurses and I yelled some more. (I may have mentioned that I would like to see how they would feel after having an untreated urinary infection for over a week.) The DON tried to wiggle out of it by saying that he most likely doesn't have an infection because he isn't running a fever. No, the doctor ordered the test so it doesn't matter if he has the infection or not you are required to follow the order. Try again. Next she said that they would have caught the infection when they did his blood work up. No, that was done on May 28 and this possible infection was documented on June 6. Try again. Well the hospital would have found the infection when they examined him. No, that was June 4, this was documented on June 6. Care for another try? Finally I just got "This was an error and our part and we are sorry." I told them to put him on antibiotics ASAP and that I would call back to check on the lab results the next day. It came back positive for the infection, and before you ask, yes, I have reported this incident to the state and they are investigating it.
When I went back to visit at the weekend, I found Dad with the nastiest case of pink-eye you can imagine. I asked the nurses what they were doing to treat his eye and the response I got was "What's wrong with his eye?" Seriously. I also found his denture case buried in the back of a drawer from where someone had shoved it 5 days before when they moved his room. He had not had his dentures out to be cleaned at all since! Remember that personal number the Director had given me? You can bet I used it that day. I also wrote a sign and hung it on the wall instructing the staff to remove and clean his teeth every night.
I had discussed the list of Dad's meds with some nursing family and friends. The consensus was that one particular medication was probably causing problems so I requested to stop that one. It's a 10 day process to come off of that med so we wouldn't be able to tell right away. Dad was getting so much worse. He didn't remember my brother who he had seen only a few weeks before. He didn't remember being married to my mom for 40 years. He didn't remember my boys. It was pretty much just me. He always remembered me and was happy to see me.
The following week I started calling around again. I needed to get him out of this place. I tried to explain to some of the places that had turned us down before how his condition had declined so rapidly. They seemed to feel sorry for me, but they still said they couldn't take him because his past behaviors made him too much of a risk. Even though he can no longer get out of bed or even go to the bathroom on his own. Again, seriously. I finally called this special Alzheimer's care facility that is 45 minutes away. A co-worker highly recommended it after her mother stayed there. I figured that even if I didn't get to see him as often, and even if that meant he would forget me sooner, it was the best option if he was well taken care of. They sent someone over to evaluate Dad. (This is happening at the same time as that whole deposition thing. whee.) This is when the nursing home learns that I'm trying to find another place for him. Believe me, I have expressed my unhappiness with his care several times by now. After waiting the obligatory 3 days, which of course fell over a weekend making it longer, Monday I heard back and they said sorry but no. For all the same reasons and the other places. If an Alzheimer's specialty facility can't deal with old people acting out, especially when said person is now helpless, then what hope is there for the world?
Tuesday, I get a call from the nursing home saying they are worried about Dad's weight loss. I had noticed he was thinner. He is a big guy, 6'1" before he started stooping with age. Since moving in about 5 weeks ago he has lost over 20 pounds. Down from 182 to 159! They are also switching him to a purred diet because he seems to have problems swallowing. They are starting him on a new drug to increase his appetite. Lovely. How have we fallen this far so quickly? The nurses say that they think it's just his dementia getting worse, but these people didn't know him 5 weeks ago. He was a completely different person after the psych hospital. I still haven't been able to get an appointment to speak with the doctor who won't return my calls. Queue the daily panic attacks.
Wednesday, the Director called and said if I was still interested in a transfer for Dad he had spoken with another facility owned by the same company and they would be willing to take him. This new place is much closer for me and also a LOT nicer. Don't get my hopes up, Dude. I told him that they had turned us down in May when we called and he said he had made an arrangement for me and the spot was ours if I just said yes. I still don't trust this guy so I told him I would look into it and I called the new place myself. They said it was really true and they could move him tomorrow if I wanted. I asked if they used the same doctor, they don't. In fact they have 3 different doctors that cover the facility and Dad would be under the care of one that specializes in Dementia. This doctor and/or his nurse practitioner come by 2 to 3 times a week. Wow! You totally had me at he will have a new doctor!
It does not pass my notice that this arrangement was probably made to keep the Director out of hot water. He most likely heard of my complaint to the state and didn't want Dad to get any worse on his watch. I don't care what the reason, I'm just glad it happened.
Thursday, my kind bosses let me take time off to spend hours filling out paperwork for admissions. Then I had to go pack up his stuff and rush to my dentist appointment then back to the new place to unpack. I swear I should just not even try to make appointments for myself because they just get in the way.
Friday, I went to visit after work and for the first time my Daddy didn't recognize me. He thought I was a nurse. I know he was confused because of the move and everything was new and different. There had been times before when he couldn't remember my name, but he always knew I was his daughter. Never one of the nurses. I don't think he noticed me crying as I helped him with his dinner. After a while I told him I was his daughter, he accepted that even though it was a new concept for him at that moment. I asked him if he remembered how much I loved him and he spread his arms wide open. At least I'm in there somewhere.
Sunday was much better. He knew me right away and he knew my name and even asked about the boys and remembered their names too. He said he liked his new place except for one thing, there were some bad people. What bad people? They were called Democrats, and they were trying to push out the good people that are called Republicans. (I'm honestly not trying to be political, but this cracked me up! It would have had the same effect if the goodies and the baddies were reversed, I don't care.) I will take a bat-shit crazy Daddy that knows who I am over a nice sweet old man that thinks I'm a stranger any day! The bat-shit part doesn't bother me at all actually. I have kids, I know how to play pretend.
I saw him again today and he was still doing well. He told me to say hi to my husband and the boys. He also told me that there was a train wreck and he was sad because he thinks someone may have died. I'm not sure, but I think he thinks the wheelchairs are little trains. He also pointed out the North and South sides of the building to me and he was really pointing the correct directions. There are plenty of adults that don't know their directions (I would be one if I wasn't married to a land surveyor) but for a recently displaced Alzheimer's patient to get them correct was impressive to me.
He seems happy and stable for now. The staff seems caring and attentive, so I'm happy so far. I'm supposed to talk to his doctor on Friday to discuss his treatment and I guess we will go from there.
Now is the part where I send you a cyber cookie if you've actually read this whole story. I hope to keep this blog very much more updated from now on so that I can just direct people here and I can stop telling the story so many times. Good luck to me!
Going back to work sucked lemons. Not only did I have to seriously have to cut back on watching Dawson's Creek on Netflix, but I also had to talk to people. Gross! It was weird trying to figure out how to respond when people asked how I was doing. I ended up going with, "Well, I'm here." I figured most of them were probably happier not knowing how I was really doing. I spent a good chunk of my first couple of weeks back just crying at my desk and hoping no one would notice. One of my sweet friends who sits close to me would check on me frequently and prayed over me when it looked like I needed it. There are some people that you just know God puts in your life for a reason and she is one of those for me.
I had been trying for a couple of weeks to get the nursing home to set up an appointment for me to meet with Dad's doctor. Funny enough this is the same doctor he had at the first nursing home, but this is NOT a good thing. This doctor had refused to fill out paperwork for me to apply for FMLA to have time off work when I needed to do something for Dad. He had also flat-out refused to speak with me over the phone. I mean he was in the same room when I was talking to the secretary and just would not take the phone. Ass. So it was really no surprise that he didn't want to set up an appointment with me now. The nursing home compromised by setting up a care plan meeting where I get to talk to his nurses and physical therapist and social worker and the nutritionist. Pretty much everyone but the doctor. They also decided to move Dad out of the locked unit because some genius figured out that if he can't walk anymore his odds of escaping have been drastically reduced. So they made another mess of his belongings and piled stuff all over the place. Seriously, is it too much to ask to hang the pictures back up on the wall so he can have something familiar to look at? Apparently.
At the care plan meeting the nurse was flipping through his daily charts and trying to tell me how well he was doing. She casually mentioned that on June 6 it was noted that they suspected he had a urinary infection and the doctor had ordered lab tests to confirm. I was making a list of all the meds he was on so I asked which antibiotic he was put on and she checked and said there wasn't one. So she went to check the lab tests to see if maybe they were negative, but they weren't even there. They never did the test. Mind you, this meeting was on June 13, a week later. What the hell? I marched back into the Director's office and yelled a bit. He took me to the Director of Nurses and I yelled some more. (I may have mentioned that I would like to see how they would feel after having an untreated urinary infection for over a week.) The DON tried to wiggle out of it by saying that he most likely doesn't have an infection because he isn't running a fever. No, the doctor ordered the test so it doesn't matter if he has the infection or not you are required to follow the order. Try again. Next she said that they would have caught the infection when they did his blood work up. No, that was done on May 28 and this possible infection was documented on June 6. Try again. Well the hospital would have found the infection when they examined him. No, that was June 4, this was documented on June 6. Care for another try? Finally I just got "This was an error and our part and we are sorry." I told them to put him on antibiotics ASAP and that I would call back to check on the lab results the next day. It came back positive for the infection, and before you ask, yes, I have reported this incident to the state and they are investigating it.
When I went back to visit at the weekend, I found Dad with the nastiest case of pink-eye you can imagine. I asked the nurses what they were doing to treat his eye and the response I got was "What's wrong with his eye?" Seriously. I also found his denture case buried in the back of a drawer from where someone had shoved it 5 days before when they moved his room. He had not had his dentures out to be cleaned at all since! Remember that personal number the Director had given me? You can bet I used it that day. I also wrote a sign and hung it on the wall instructing the staff to remove and clean his teeth every night.
I had discussed the list of Dad's meds with some nursing family and friends. The consensus was that one particular medication was probably causing problems so I requested to stop that one. It's a 10 day process to come off of that med so we wouldn't be able to tell right away. Dad was getting so much worse. He didn't remember my brother who he had seen only a few weeks before. He didn't remember being married to my mom for 40 years. He didn't remember my boys. It was pretty much just me. He always remembered me and was happy to see me.
The following week I started calling around again. I needed to get him out of this place. I tried to explain to some of the places that had turned us down before how his condition had declined so rapidly. They seemed to feel sorry for me, but they still said they couldn't take him because his past behaviors made him too much of a risk. Even though he can no longer get out of bed or even go to the bathroom on his own. Again, seriously. I finally called this special Alzheimer's care facility that is 45 minutes away. A co-worker highly recommended it after her mother stayed there. I figured that even if I didn't get to see him as often, and even if that meant he would forget me sooner, it was the best option if he was well taken care of. They sent someone over to evaluate Dad. (This is happening at the same time as that whole deposition thing. whee.) This is when the nursing home learns that I'm trying to find another place for him. Believe me, I have expressed my unhappiness with his care several times by now. After waiting the obligatory 3 days, which of course fell over a weekend making it longer, Monday I heard back and they said sorry but no. For all the same reasons and the other places. If an Alzheimer's specialty facility can't deal with old people acting out, especially when said person is now helpless, then what hope is there for the world?
Tuesday, I get a call from the nursing home saying they are worried about Dad's weight loss. I had noticed he was thinner. He is a big guy, 6'1" before he started stooping with age. Since moving in about 5 weeks ago he has lost over 20 pounds. Down from 182 to 159! They are also switching him to a purred diet because he seems to have problems swallowing. They are starting him on a new drug to increase his appetite. Lovely. How have we fallen this far so quickly? The nurses say that they think it's just his dementia getting worse, but these people didn't know him 5 weeks ago. He was a completely different person after the psych hospital. I still haven't been able to get an appointment to speak with the doctor who won't return my calls. Queue the daily panic attacks.
Wednesday, the Director called and said if I was still interested in a transfer for Dad he had spoken with another facility owned by the same company and they would be willing to take him. This new place is much closer for me and also a LOT nicer. Don't get my hopes up, Dude. I told him that they had turned us down in May when we called and he said he had made an arrangement for me and the spot was ours if I just said yes. I still don't trust this guy so I told him I would look into it and I called the new place myself. They said it was really true and they could move him tomorrow if I wanted. I asked if they used the same doctor, they don't. In fact they have 3 different doctors that cover the facility and Dad would be under the care of one that specializes in Dementia. This doctor and/or his nurse practitioner come by 2 to 3 times a week. Wow! You totally had me at he will have a new doctor!
It does not pass my notice that this arrangement was probably made to keep the Director out of hot water. He most likely heard of my complaint to the state and didn't want Dad to get any worse on his watch. I don't care what the reason, I'm just glad it happened.
Thursday, my kind bosses let me take time off to spend hours filling out paperwork for admissions. Then I had to go pack up his stuff and rush to my dentist appointment then back to the new place to unpack. I swear I should just not even try to make appointments for myself because they just get in the way.
Friday, I went to visit after work and for the first time my Daddy didn't recognize me. He thought I was a nurse. I know he was confused because of the move and everything was new and different. There had been times before when he couldn't remember my name, but he always knew I was his daughter. Never one of the nurses. I don't think he noticed me crying as I helped him with his dinner. After a while I told him I was his daughter, he accepted that even though it was a new concept for him at that moment. I asked him if he remembered how much I loved him and he spread his arms wide open. At least I'm in there somewhere.
Sunday was much better. He knew me right away and he knew my name and even asked about the boys and remembered their names too. He said he liked his new place except for one thing, there were some bad people. What bad people? They were called Democrats, and they were trying to push out the good people that are called Republicans. (I'm honestly not trying to be political, but this cracked me up! It would have had the same effect if the goodies and the baddies were reversed, I don't care.) I will take a bat-shit crazy Daddy that knows who I am over a nice sweet old man that thinks I'm a stranger any day! The bat-shit part doesn't bother me at all actually. I have kids, I know how to play pretend.
I saw him again today and he was still doing well. He told me to say hi to my husband and the boys. He also told me that there was a train wreck and he was sad because he thinks someone may have died. I'm not sure, but I think he thinks the wheelchairs are little trains. He also pointed out the North and South sides of the building to me and he was really pointing the correct directions. There are plenty of adults that don't know their directions (I would be one if I wasn't married to a land surveyor) but for a recently displaced Alzheimer's patient to get them correct was impressive to me.
He seems happy and stable for now. The staff seems caring and attentive, so I'm happy so far. I'm supposed to talk to his doctor on Friday to discuss his treatment and I guess we will go from there.
Now is the part where I send you a cyber cookie if you've actually read this whole story. I hope to keep this blog very much more updated from now on so that I can just direct people here and I can stop telling the story so many times. Good luck to me!
Monday, July 2, 2012
The Long Version Part 2
By Monday I had decided that I really needed some help. I spent a good
part of my work day researching company policy on leave of absence and
short term disability coverage. I also informed my brother that I needed
him to come help me. I was a mess. I discovered that to qualify for
mental health disability I needed to be under the care of a Psychiatrist
instead of just my normal doctor. I called around until I found one
that could see me the next day and I requested a few days off work.
Going to shrink for the first time is a strange thing, or at least it was for me. I felt like people might be watching me or judging me in the waiting room. (I would never think less of someone that was seeing a mental health doctor, this is purely my own self-consciousness attacking myself. In fact, my doctor would probably know the clinical term for that.) There I was wondering if I should even be there. Was he going to just laugh me out of the office? And how do I even start to explain everything that has been going on? I filled out a little paperwork and then when it was my turn and the nice doctor asked me what was going on I burst out bawling in his office. Even though I believe this helped my case, it was not intentional. I told him about Dad and that I thought I needed some time off work. When he asked how long I said 2 to 3 weeks and he went with 3. Then I was handed another, much larger, stack of paperwork to fill out and sent back to the waiting room. After I left the office I sat in my car for about 30 minutes calling in to set up my leave of absence. They really make it difficult to take time off for mental health. It probably would have been easier to break my leg or something. Then I left and had to go over to the lab and get blood drawn. I suppose they want to know if there is a biological reason a person is crazy or if it really is all in their head. My tests all came back normal. That would make me a, uh, normal crazy person?
My official diagnosis was high anxiety and stress. I think the doctor over-compensated by placing me on an anti-depressant, sleeping pills, and Xanax for anxiety. I never took the sleeping pills because I'm scared that I won't wake up if I take those, but I started the other two. I broke both of them in half because I was also scared of the Xanax as I'm sure we have all heard the bad addiction stories about those. The anti-depressant ended up just making me sick as hell for the entire three and a half weeks I was taking it. I tried it at different times of day and different doses, but it didn't help. I was sick to my stomach and knocked out exhausted for most of those 3 weeks I was off work. I'm telling you, I know how to party! The Xanax seemed to be helpful though. I mentioned to the therapist (that I was also required to see to be off work) that I was still not able to sleep through the night because I would wake up with horrible chest pains and not able to breathe. I learned that I was having panic attacks in my sleep as well as the ones I already knew about when I was awake. As of now, I'm still not able to sleep through the night without a Xanax before bed. But even that doesn't help me to not be scared of sleeping. I stay awake until I literally can't anymore almost every night. I have horrible dreams that I won't even tell you about because they are so disturbing. Except for that one I had a few weeks ago when I was hanging out with LeVar Burton, he was lovely. :-)
Meanwhile, Brother came out to help me which I am really grateful for. We went to see Dad at the hospital a couple times. He didn't recognize Brother at first, which was really sad to see. He was still really out of it. After a bit he understood that his son was there and he was really happy to see him. Dad was still too messed up from the drug reactions to seem to care where he was, but he was happy too see us each day when we went to visit. After about 6 days the hospital was ready to release Dad, but we still had not been able to find a facility that would accept him due to his behavior issues from the first nursing home. The hospital tried to tell me that I was required to come pick him up and keep him in my care because I was the one that dropped him off there. A quick call to Adult Protective Services fixed them up on that option. APS informed them that they are required to find a suitable facility for him. Between myself, Brother and the social worker at the hospital I estimate that we called at least 30 nursing homes that all turned him down. Some because they were full, but mostly due to his records. There was a commitment hearing set up for the following Monday that would require Dad to go to court and if a suitable home had not been found he would be left in state custody and most likely be sent to a state hospital several hours away from me. Finally we found a place that would take him and he was moved on Friday evening.
We were very grateful that he would still be close by, but man oh man, this place was ghetto! It is an older facility that had not been well cared for, it was not clean and the people, with few exceptions, were horrible. Brother helped me get all his stuff moved in and set up for him, but sadly for me, he had to fly away back home to his own life. I tried really hard to be open-minded about the place and the staff. The director seemed nice at least. He gave me his cell number and told me to call anytime. I was worried after a week when I would call and ask about my Dad and the employees would respond with "Who is that?" Not long after he got there, I went to visit him one morning. I received a phone call that evening saying that they found Dad in the parking lot (This place allows residents outside whenever they want.) and he was trying to go in the street. He told the nurses that he was looking for me. Apparently he thought I was still there from earlier. They documented this as an escape attempt and moved him to the secured locked wing of the facility. This is where the really special people go, and I feel so sad for them. People are screaming all the time, I saw a guy peeing in the sink because he didn't want to go to the bathroom, and others just asked me for money every time they saw me. Dad told me he really didn't like it there and wanted me to take him home. Yeah, that sucked. When they moved Dad to the locked unit someone had the bright idea to put all his clothes into a large trash bag and leave it on the floor of his room. I complained for 4 days before I finally just put them away myself. The second time I called, the director of nursing actually told me that she had a busy job and just forgot that I had called before. But, it's okay because they were really sorry about it afterwards.
Shortly after he was moved he started to get more depressed and just wanted to sleep all the time. The day before I had to go back to work I went to visit and Dad told me that he hurt all over and couldn't get out of bed and thought he should go to the hospital. I informed the nurses who then in turn informed me that he had not been out of bed at all for 3 days! I asked if he could get some pain meds, but they thought it was a better idea just to send him to the ER. He was checked at the ER for blood clots in his legs and they discovered that he did have some arthritis in his knees, so they gave him pain meds and he was suddenly fine. Maybe I should be a doctor! After this episode, he has not been able to walk again on his own.
Please stay tuned for part 3 and hopefully the conclusion of the getting caught up stuff.
I would like to thank everyone for the kind comments you have left me. I really appreciate all the support I've received from you all. I feel bad that every time I post something I just get a flood of sympathy messages. I feel bad that I make you all feel bad. I wish I had more good news to share.
Going to shrink for the first time is a strange thing, or at least it was for me. I felt like people might be watching me or judging me in the waiting room. (I would never think less of someone that was seeing a mental health doctor, this is purely my own self-consciousness attacking myself. In fact, my doctor would probably know the clinical term for that.) There I was wondering if I should even be there. Was he going to just laugh me out of the office? And how do I even start to explain everything that has been going on? I filled out a little paperwork and then when it was my turn and the nice doctor asked me what was going on I burst out bawling in his office. Even though I believe this helped my case, it was not intentional. I told him about Dad and that I thought I needed some time off work. When he asked how long I said 2 to 3 weeks and he went with 3. Then I was handed another, much larger, stack of paperwork to fill out and sent back to the waiting room. After I left the office I sat in my car for about 30 minutes calling in to set up my leave of absence. They really make it difficult to take time off for mental health. It probably would have been easier to break my leg or something. Then I left and had to go over to the lab and get blood drawn. I suppose they want to know if there is a biological reason a person is crazy or if it really is all in their head. My tests all came back normal. That would make me a, uh, normal crazy person?
My official diagnosis was high anxiety and stress. I think the doctor over-compensated by placing me on an anti-depressant, sleeping pills, and Xanax for anxiety. I never took the sleeping pills because I'm scared that I won't wake up if I take those, but I started the other two. I broke both of them in half because I was also scared of the Xanax as I'm sure we have all heard the bad addiction stories about those. The anti-depressant ended up just making me sick as hell for the entire three and a half weeks I was taking it. I tried it at different times of day and different doses, but it didn't help. I was sick to my stomach and knocked out exhausted for most of those 3 weeks I was off work. I'm telling you, I know how to party! The Xanax seemed to be helpful though. I mentioned to the therapist (that I was also required to see to be off work) that I was still not able to sleep through the night because I would wake up with horrible chest pains and not able to breathe. I learned that I was having panic attacks in my sleep as well as the ones I already knew about when I was awake. As of now, I'm still not able to sleep through the night without a Xanax before bed. But even that doesn't help me to not be scared of sleeping. I stay awake until I literally can't anymore almost every night. I have horrible dreams that I won't even tell you about because they are so disturbing. Except for that one I had a few weeks ago when I was hanging out with LeVar Burton, he was lovely. :-)
Meanwhile, Brother came out to help me which I am really grateful for. We went to see Dad at the hospital a couple times. He didn't recognize Brother at first, which was really sad to see. He was still really out of it. After a bit he understood that his son was there and he was really happy to see him. Dad was still too messed up from the drug reactions to seem to care where he was, but he was happy too see us each day when we went to visit. After about 6 days the hospital was ready to release Dad, but we still had not been able to find a facility that would accept him due to his behavior issues from the first nursing home. The hospital tried to tell me that I was required to come pick him up and keep him in my care because I was the one that dropped him off there. A quick call to Adult Protective Services fixed them up on that option. APS informed them that they are required to find a suitable facility for him. Between myself, Brother and the social worker at the hospital I estimate that we called at least 30 nursing homes that all turned him down. Some because they were full, but mostly due to his records. There was a commitment hearing set up for the following Monday that would require Dad to go to court and if a suitable home had not been found he would be left in state custody and most likely be sent to a state hospital several hours away from me. Finally we found a place that would take him and he was moved on Friday evening.
We were very grateful that he would still be close by, but man oh man, this place was ghetto! It is an older facility that had not been well cared for, it was not clean and the people, with few exceptions, were horrible. Brother helped me get all his stuff moved in and set up for him, but sadly for me, he had to fly away back home to his own life. I tried really hard to be open-minded about the place and the staff. The director seemed nice at least. He gave me his cell number and told me to call anytime. I was worried after a week when I would call and ask about my Dad and the employees would respond with "Who is that?" Not long after he got there, I went to visit him one morning. I received a phone call that evening saying that they found Dad in the parking lot (This place allows residents outside whenever they want.) and he was trying to go in the street. He told the nurses that he was looking for me. Apparently he thought I was still there from earlier. They documented this as an escape attempt and moved him to the secured locked wing of the facility. This is where the really special people go, and I feel so sad for them. People are screaming all the time, I saw a guy peeing in the sink because he didn't want to go to the bathroom, and others just asked me for money every time they saw me. Dad told me he really didn't like it there and wanted me to take him home. Yeah, that sucked. When they moved Dad to the locked unit someone had the bright idea to put all his clothes into a large trash bag and leave it on the floor of his room. I complained for 4 days before I finally just put them away myself. The second time I called, the director of nursing actually told me that she had a busy job and just forgot that I had called before. But, it's okay because they were really sorry about it afterwards.
Shortly after he was moved he started to get more depressed and just wanted to sleep all the time. The day before I had to go back to work I went to visit and Dad told me that he hurt all over and couldn't get out of bed and thought he should go to the hospital. I informed the nurses who then in turn informed me that he had not been out of bed at all for 3 days! I asked if he could get some pain meds, but they thought it was a better idea just to send him to the ER. He was checked at the ER for blood clots in his legs and they discovered that he did have some arthritis in his knees, so they gave him pain meds and he was suddenly fine. Maybe I should be a doctor! After this episode, he has not been able to walk again on his own.
Please stay tuned for part 3 and hopefully the conclusion of the getting caught up stuff.
I would like to thank everyone for the kind comments you have left me. I really appreciate all the support I've received from you all. I feel bad that every time I post something I just get a flood of sympathy messages. I feel bad that I make you all feel bad. I wish I had more good news to share.
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