November 2nd

So I stink at regularly updating this blog. There, I said it, you don't have to!!

I want to warn blog readers of something. I'm going to be honest in this blog, and probably give information that most people consider private. I want you, his family and friends, to know the truth. I feel that this is the reason I created this blog, was to tell people close to us what is going on so they not only know, but can offer support. I trust that you will not use this information in a negative manner, and only those close enough to the family to trust have been given this blog address, so I want you to know that, while this is on the internet, it is not something I have advertised or otherwise made public. Dad is unaware of the existence of this blog, and he does not currently have a computer. Thank you for your understanding.

I also want you to know that the only way to survive something like this situation is with humor. So while it may seem like I poke fun at a situation, it's because that's my coping mechanism. It's not done out of cruelty or with malice, it's because a particular situation is comical. Like the time he put his flag pin on his shirt, only he put the back on the front and the flag to the inside. He laughs at these things, too, and was the one who made the point in this case that the smooth flag was more comfortable against the skin and maybe he should leave that "decorative" pincher piece on the outside. He laughed as he said it and was not hurt by the fact that we all found it humorous. My absolute favorite spans more than a decade. When Dad was hospitalized with pancreatitis in the 90's, it gave him hallucinations, one of which was black kittens. He saw them everywhere. It was a joke in our family after that, one that he was in on and found quite funny. So here we are, about three years ago, and he is hospitalized again. I used to go feed him breakfast in the mornings so Mom could sleep in, and then she would take over until late at night. He was incoherent at the time, so I would also go back every night once the boys were in bed and sit with her. One night we were laughing about the black kittens and she was telling me some of the other delusions he had. We finally got him to eat a bedtime snack and fall asleep around 10:30 so we decided around 11 it was time to leave. Visiting hours were over, and the hallways and nurse's station were empty as we left, as they usually were. But that night, for whatever reason, I looked at the nurse's desk, and what I saw drained all the color from my face and stopped me cold. I saw a black kitten. No person, just a little tiny black kitten with white feet cleaning itself on the nurse's desk. I blinked, and it didn't go away. So at this point I debated telling Mom, because I knew I was sleep deprived and possibly had just crossed over into "delusional" myself. I finally got her attention, and asked her to come back and look. I didn't tell her what I saw because I hoped if it wasn't really there I could just make something up. She saw it (yay, I'm not crazy) and about that time the night nurse came out and explained that it came into the ER and she was adopting it. We told her the story and all had a good laugh (most of it at my expense regarding the crazy) before Mom and I went home.

So, on to the updates!! We have had to take the keys to his car out of the house (again - we gave them back to Mom so the car could be used occasionally to prevent the battery from draining, etc). He promised he wouldn't bother Mom about driving the car, he wouldn't touch the keys, and then once we had them back in the house, he did all those things. When any of us would remind him of his promise, he would simply laugh and say, "Well, I guess I lied, huh?" or something to that effect. So, deciding he was no longer trustworthy, Mom, Adam and I decided the keys needed to be permanently removed from the house. So we sat him down and had a lengthy conversation, which Dad spent most of throwing a fit and storming off from us as we tried to explain our decision. He doesn't understand that we're doing things FOR him, because it feels to him like we're doing them TO him. He cannot grasp the concept that if he is an unsafe driver, he could hurt or even kill someone. I'm not exaggerating that fact one bit. He seems to think the worst thing that could happen is that he might get in a fender bender. And he has insurance, so he assumes that covers everything that could possibly happen. He keeps calling his physician, along with the Area Mental Health agency who also tested his cognition and ability to drive a vehicle, asking when he can be tested again. Mom tries to keep him from making multiple phone calls (or calling someone to ask a question she knows the answer to) but he often makes phone calls from other areas of the house, so she isn't always able to stop him. We have been told they won't re-test for six months from the date of the initial screening, and we also know he would fail more miserably this time than last. He's terribly frustrated by the loss of his independence in this situation.

Dad's brother, Jim, was thrown a surprise birthday / cancer-remission party last month (Yay!!) and Mom, Dad and I all planned to attend together. As we were getting ready to leave, Mom got violently ill (I'll spare you the icky-ness) and decided there was no way she could handle the 3-4 hour (one-way) drive. So rather than cancel plans entirely, I said I would drive him there and we would attend, just the two of us. This also gave Mom a much needed and well deserved day off. So I thought. He told Mom he would drive, and was quite angry at her the entire day because she told him that I was to drive there and back. He started the day angry with me, also, for siding with her. He still views me as his child, which I am, but not in the sense that he has control over me. He threatened me (as a parent would a teenage child) when I would not give him the keys. I stood firm and told him I agreed with Mom, and the evening before was the night we had the discussion with him regarding his lying about his intentions and that we were taking the keys out of the house because he had no business driving. He became angry with me so the trip started badly.

We had a few minor arguments on the way there, mainly because I was trying to help him with something and he would get upset. One was because he wanted to lay down in the backseat, and there was a town in 2 miles, so I told him to wait and I would pull over then so he could get out and use the door to get into the backseat. No. He climbs over the seat (you may recall he has chronic back pain from a car wreck at age 18 and four subsequent back surgeries, one of which also rendered him quite inflexible) putting his feet in my lap, face, and nearly kicking me in the nose twice. I got somewhat upset because he kept kicking the steering wheel and I told him next time he would wait because that was just dangerous to do that when in two minutes it would have been safer (and I figure, much more comfortable) to pull into a convenience store and simply get out the front door and get in the back. Simple things like that seem to escape him, and when I reasoned with him, he seemed unable to grasp the concept.

So we got to the party and he had forgotten the gift and card in the car. He asked for the keys, and I wasn't quite sure how to handle the situation. I knew the items were in the trunk, and he was seemingly coherent at the time. I honestly figured I could trust him, but I was also 4 hours from home and REALLY did not want to deal with a situation where he might leave me stranded or not give me the keys back. So I told him I would walk back out with him. I pulled the keys from my purse, and he suddenly tried to swipe them from me, cursing and angry. I pulled them away, and calmly told him I would go with him, but I would not give them to him. He was still angry, and the minute we walked outside and out of earshot (so he thought) he began berating me. So I turned and walked back inside without a word. He came back in and demanded I go outside with him, and I told him I would when he calmed down. He then began demanding we leave and go home. I told him that I did not drive 4 hours one way and get someone to watch my children for the day for me simply to drive back home after being there for only 5 minutes. He told me to unlock the car so he could go sit in it until I was ready to leave. After he calmed down, or so I thought, I walked him to the car to get the bag with the gift (a really neat watch) and the birthday card he brought. Once we got to the car, he began berating me again, this time quietly and in that tone you use with your children when they intentionally do something very naughty. I told him he was not allowed to speak to me like that, especially over something as minor as the car keys he knew he was not to have. He then pushed me in anger, and I at this point said loudly enough for the other people in the parking lot that he was not to touch me. He yelled back at me not to touch him, which of course I had not, nor did I intend to unless it was absolutely necessary for my safety. I realized at this point, because of how he did not want to draw attention, that he knows what he is doing is wrong (yelling at me and physically pushing me) because he's making sure to only do it when and where no body can see or hear. That is actually a good thing because it means his sense of reasoning is intact in that regard.

He then called Mom and told her how horrible I was being, which was almost comical because it was similar to a playground tattle-tale. Mom and I felt I handled the situation gracefully and calmly, even though he was quite upset. I'm sure he is sensitive about having to be driven by his child and I was trying to be cautious about that but I guess I didn't do too well!! Anyway, after he calmed down (thank you, Mom!) we decided to go visit with his other brother, Hal and his wife, Bernita. That went well and we returned to the golf course (where the dinner and celebrating was going on) and he saw so many family members and friends from his past that it really warmed my heart to see that. Times like this make it worth dealing with the attitude change and frustrations.

He went back and forth the rest of the day being angry at me and just being grateful that he got to see so many different people. The drive home was fairly uneventful (he slept most of the way because he usually sleeps some during the day and wasn't able to that day) and even though I took the wrong exit off the interstate, we got where we needed to go after an unintended tour of Newton... :)

Recently Dad fell in the garage on the concrete and hurt his knee pretty badly. He couldn't bear weight with it for a few days and relied on Mom to basically drag him everywhere. Her back is now hurting pretty badly from that and she is coughing now which does not help her back at all!! We think his knee is going to be OK now, though.

Dad has also continued to hide things - money, his wallet, jewelry and medications to name a few. Tonight I found a torn up piece of blank paper hidden behind the TV.

I want to make it clear that we have a wonderful support system in all this chaos. Dad's two brothers, Jim and Hal, along with their wives, Belle and Bernita have been absolutely wonderful in their support of us along this journey. Jim has battled cancer, and Hal has had some neurological issues due to early-onset Parkinson's disease, yet both, along with my wonderful aunts have remained steady and constant support. Mom's sister, Martha (everybody calls her Baby) is also a godsend in all of this. Dad's friends are too numerous to mention but they are all wonderful and ready to help at the drop of a hat. From researching conditions and treatments, to simply helping by talking to him (because he is still coherent enough to realize that some people have stopped calling, and Mom & I know it's not out of lack of concern or love, it's because he can sometimes be uncomfortable to talk with, and will sometimes try to put people in positions they're not comfortable with, as in asking them to tell us he is safe to drive) and others help by dropping off an occasional meal. I appreciate so much the prayers and phone calls and emails. Please know that the best thing you can do sometimes is just listen. To any of us, Dad included. I think I use this blog to do just that, to vent. So thanks for reading, and please know that he would love a phone call, and if you feel uncomfortable doing that, a letter would be great. If you would rather, I am more than happy to print him off anything you send me and take it to him. I try to visit several times per week so it will get to him quickly. Even just a quick hello or a funny forward would make his day. You can leave a comment in this blog or email me at mommyof4greatboys@gmail.com or angelbear@gcnet.com - both are checked daily even if I don't respond right away!! I also put my phone numbers and theirs in the first post.

October 14th

So we have had some good days and some bad days. That's to be expected, and the good days make the bad days go by a little faster.

Dad is still having trouble accepting that he is no longer capable of driving and it is difficult for all of us. Mom wishes he could still drive, especially with winter and icy roads, and also just as much for his own peace of mind. She is handling all this extremely well and I am very proud of her. I cannot imagine the added stress his condition puts on her day to day. She is 100% responsible now for all of his medications, transportation and all the normal day to day activities he used to be able to help with, such as cooking, cleaning, and laundry.

He can do some things with direction, but he is unstable when standing which makes it almost impossible to do many of those things. He still feeds himself, although he is messy. He is still showering alone, and can dress himself (aside from footwear) in things like sweats. He can do the stairs, though they wear him out and he heavily relies on the handrail.

We are constantly reminding him to stand up straight as he bends over at the waist to almost a 90 degree angle. I know his back is in constant pain, but he has never bent over this far in the past. He leans quite quickly and has nearly fallen several times that I have seen myself.

He is becoming sneaky to try to get what he wants now. He lost his cell phone about 3 weeks ago, and told me to just go buy him a new one. When I talked to Mom, we agreed that since it had only been a few days at that time, we would wait to purchase another one. He called me again, to make sure I had ordered it, because, "Mom told you to go ahead and purchase it, right?" I told him I thought we were still going to keep looking for a while before spending the money on a new phone, but he insisted that he and Mom agreed and wanted me to order it. When I spoke to Mom later that day, she said they had talked about it several times and that she was still looking and that they had not agreed to buying a new one just yet. He will call people from the bedroom or basement so Mom can't hear his conversations. She did eventually find the phone, packed in a suitcase they hadn't used in years, along with his drill and the battery charger for the drill.

His concept of time is not good anymore. He will insist things happened months ago when it's barely been a few days. He will call and ask me for a time frame that something happened (because he and Mom can't agree and he gets angry very easily) and when I (without knowing who is arguing which side) agree with Mom he quickly wants to get off the phone with me, and then will tell Mom that I agreed with him. That is, until she gets the phone to call me back, when he usually gives in and tells her that I didn't agree with him, but that Mom was, in fact, correct.

He still has many facets of his personality that make him "Phil" and I am so grateful for that. He is generous and giving, and he obviously loves all of us very much. I know this is hard on him because he realizes that he is not able to do things to help other people and is becoming increasingly dependent on Mom and others to do things for him. He is handling it well for the most part, but the driving continues to be what hits the hardest.

September 11th

Dad has somewhat leveled out lately I feel. He is still confused quite a lot of the time, but has moments of clarity also. He can fade in and out in a moment, even during a sentence.

He had gone a while without a fall, but took a nasty one the other day and really messed up his arm. Mom is doing the wound care routine on it several times per day and hopefully it will begin to heal. His skin is so fragile and this fall left a large gaping wound that the skin could not even be pulled over to stitch so that is not an option.

He called me the yesterday and left two fairly urgent sounding messages on my answering machine asking me to immediately call him back and as soon as I got the message I did. He simply needed his drill (which I had borrowed to remove my curtain hardware from the wall to be able to paint) but he considered that to be an emergency. I went over to their house right after we got off the phone and returned his drill and the charger I had, which did not work. Later that night, he told Mom he thought I was angry with him because I wouldn't return his messages, to which she replied that I had already come over and returned his drill. He was still insistent that I was upset and hadn't contacted him.

He is difficult to convince when he "knows" in his mind that things are one way and he often breaks things because he "knows" how it works. Yesterday, he confused the drill batteries with the charger and tried for several minutes to disassemble the batteries, which he was unable to do. Mom and I both tried convincing him that the batteries didn't come apart and I even showed him where the screws were that held the rest of it together to prove that it was not something he could pull apart but he became angry with me and told me he knew what he was doing. He has tried to use his power saw to open the door (it was locked, like it always is) and several other such incidents that seemed extreme for the situation, but that is how his mind works now. He is also not wanting to ask for help, or feel helpless I am sure, and so he would rather deal with it himself (even using extreme means) than have to swallow his pride admit he isn't sure how to do everything anymore. He is difficult to interact with when he is confused because he won't listen to reason. I understand that's part of dementia, but it doesn't make it much easier to deal with when you're fighting with him to try to keep him from breaking things.

He is also hiding things because he thinks it's funny, but he hides things like medication and such and then is unable to recall where he has hidden it.

I do not see him being able to drive again, but he does not know this. Right now, that is what we're striving for. He is intent on driving again and that motivates him. We are able to use that to our advantage to help him get through the bad times.

August 26th

Sorry I haven't posted lately. Life in general lately has been crazy for me. I bought the house I've been living in for almost 10 years and there were so many hoops to jump through I think I've developed legs of steel!! Since I'm self employed, it was a real nightmare proving the income and whatnot to satisfy the bank. I'm also helping teach a Boot Camp class at our local YMCA @ 5:30 every weekday morning so I don't have to take time away from the boys in the evening to go workout. And with school starting, and homework every night for all four boys, it's been a very interesting last few weeks!!

Dad was evaluated by Area Mental Health Center as requested by his doctor, and also by Dad himself to test his competency to drive a vehicle. The loss of his driving privileges have really hit him hard and he has become quite angry with us, but Mom takes the brunt of it because she lives with him. Adam removed the keys from the house because Dad was threatening to physically tear the house apart to find them after Mom told him she would not give them to him.

He was nervous and didn't do as well as he had hoped on the test. It showed that he is experiencing dementia, which, of course, we already knew.

He was placed in the Normal range for:

• comprehension
• repetition
• naming
• judgement

He was placed in the Moderate Impairment range for:

• calculations
• similarities

He was classified as Severe Impairment range for:

• construction
• memory

The report states that "Based on his cognitive deficits and input from family about their concerns, it does appear that Philip should not be operating a vehicle at this time."

This was, of course, devastating and although Dad denies any depression, his anger and irritability, along with other indicators do point toward that. The report indicates that the therapist testing him also had concerns. She felt that with the loss of his driving privileges, the loss of activities he previously enjoyed (things his back pain and lack of energy prevent like golf and bowling, etc) and the other symptoms pointed toward depression but Dad once again denied that he is feeling any depression.

This test was to give us a baseline for further evaluation and treatment. His driver's license has not been formally taken away, but he is under orders from the doctor, the local mental health center and his family not to drive.

Dad is becoming quite impatient, which is not normal for him at all. His computer will not turn on now, which may be a simple fix, but I was not able to take it apart that night, so he called me as I was leaving to ask me where he should go to buy a new computer. I told him he didn't need a brand new computer, probably just a part to fix his and he became angry with me telling me he has been spending all sorts of money on that old computer and he just wants a new one so it will work right. He has not had to spend any money at all on his current computer aside from the initial purchase and a $30 CD rewriter drive that I installed myself. When I reminded him that I would fix it when I had time, he once again argued with me that he would just go and buy a new one. I told him that if he was that intent on a new computer (which I'm afraid will only be more complicated than his current one) that I would help him find a good deal and we would check eBay. He then asked what stores in town sold eBay. When I gently reminded him that eBay wasn't a brand, but an auction website, he became angry and defensive.

Once again, I feel like this is not my dad. I am so very glad we still have some good times and that he is such a sweet guy when he's being himself, but the bad times sure do help me appreciate the kindness of the ones I love.

August 13th

Today Dad had an evaluation with the lady from our local Area Agency on Aging. Dad is still insistent on driving and is having a hard time accepting that he may not be able to drive again. She asked him simple questions, some of which he answered well and others he was completely off. He claimed credit for all the cooking, cleaning and laundry, which are all things he needs help with. He also told her he hadn't fallen in 4 years, and that the obviously new bruising on his arms was old. He may have been trying to bluff her, or possibly he just does not remember.

He is becoming frustrated with himself (which in a twisted way, is a good sign, because it indicates some comprehension of his situation) and that's hard to watch. He got upset to tears today over the fact that he spent almost 2 hours cutting some cantaloupes and then as he was throwing away the rind, he absentmindedly threw away all the fruit, too. Of course, he was standing on his feet on the hard kitchen floor for that entire time, so I know his back was hurting and then he didn't have anything to show for it.

We have another evaluation scheduled for next week. This one is with the people from the mental health agency, and while we're not worried about a mental defect, they may have some ideas in regards to medications that could help control his mood swings. And they will be another "authority figure" to reiterate to him that he cannot drive at this point.

I went to their house tonight with 2 of my boys (I have 4 boys for those of you who might not know me!!) and after I had been there for quite a while, and had spoken to him, he looked at my face and said, "Ashley!?!?" I don't know if he hadn't really recognized me before that, or if this is just another example of his fading in and out of consciousness. He then looked at my son, standing directly at my side, and asked where he (my son) was. He seemed to know them until that point.

The lady doing his evaluation today asked him what his plans were for the future (trying to assess if he understood that he might require long term care) and he had no idea what she was trying to get at. He doesn't realize he has changed so much and is not at all ready for the idea of having to leave home. That will be a hard discussion when it has to come.

July 11th

Yesterday, Dad saw Dr. Mangosing, and was told they could still find nothing wrong. Like I said before, that is a good thing, but if we can find a blood level that's off or something like that, maybe there is a treatment that could return him to a more normal state.

Dr. told Dad he was no longer allowed to drive, which very much upset him. He was convinced that Mom, Adam and I were over-reacting and that the doctor would take his side.

I have talked to our Area Agency on Aging and they are going to help us with figuring out what he qualifies for and how to make sure he gets the right type of care, especially if we have to place him in a facility, we need to make sure we are meeting his needs in the best way possible. I am hoping that is down the road, but we may need to do it soon, at least temporarily, to possibly try some new medications and therapies, and see what he best responds to.

He talked to me yesterday when his fog seemed to have somewhat lifted, and he was nice and told me he loved me, which is something he hasn't done in over a week and I've seen him several times. Later, however, he was being very adamant that he did not want me to come over to their house. He left me a voicemail, called me in person, and then called Adam to make sure I was not going to come over. Worried, we called Mom, who was fine but had no idea why it was such a big deal that he didn't want to see me.

We're still just taking it one day at a time, and Mom is taking the brunt of it. He gets very angry at her for no apparent reason, and when you ask him why he's angry, he doesn't even know. The other day, he asked her to bring him a drink from the kitchen, and while she was in there, she asked if he wanted anything else. He became angry and snapped at her that if he did, he could get it himself and she needed to stop treating him like an invalid who can't do anything for himself. He was angry for the rest of the day over that, and he was the one who had asked her for help in the first place!! It's those situations that are so very frustrating and heartbreaking all at once, and they happen all day long lately.

August 7th

We recieved the results of his chemical analysis just a moment ago. It's fine. Which is a good thing, except that we wanted there to be something treatably wrong that could explain why he is having such a sudden decline into dementia.

Mom says he's having a good day today, and I am very thankful for that. He would hate who he has become when he's confused and I'm sure this is a very scary thing for him.

Also, Dad is not checking his email regularly because he no longer really understands the computer. I have been over multiple times to help him but he doesn't understand even when I am there showing him. Continue to send him things if you would like, but please do not be hurt if you do not get a response.

We really appreciate all the phone calls and emails. I apologize to you if you recieved this blog as a forward from someone else, especially if you are family and I should have had your email address; my computer ate my email program a while back and I was unable to retrieve the addresses from it. If you would like to contact us, you may call my house (620) 276-2820, or you may text or call my cell phone (620) 272-6650. You can call me anytime on either number. My email is angelbear@gcnet.com, or simply comment on this blog and we will see those also. Mom & Dad's house phone is (620) 276-0797.

August 6th

Recently, Dad has had a drastic personality change. He is disoriented, and will no longer listen to reason. For the most part, we have been able to remind him that he's had some recent confusion and that is usually enough to settle him down and he will listen to us and our reasoning at that point. That is no longer the case.

He tells Mom that she is the one with problems, not him. He is often nasty toward us, with no reason or provocation. His common sense is gone, as in taking his jumper cables from his car down to the basement, and packing the car with every empty suitcase he could find because he was angry with Mom and going to run away.

He voluntarily relinquished his keys about 10 days ago, but this weekend was wanting them back. He called me and I reiterated that Mom, Adam & I all felt that he was unsafe to drive, but that we would take him anywhere he would like to go. He became angry and will no longer speak to me civilly. Last night, he left the house, walking in the direction of the highway that is about 2 blocks from their house, looking to cross it to go to Taco Bell for something to eat. Mom found him and nicely encouraged him to get in the car with her, as it was hot and humid outside, and she would take him to get food. He yelled obscenities at her, and refused to get in the car. She tried another time and was met with similar resistance. She then called me, and I was able to get him back to the house. He still was speaking to me very harshly and wanted me to leave and not come in their house.

This is not my father anymore. It's quite sad to have to watch someone you love become someone else.

We got the results of the CT scan today, and it was negative. While that is a good thing, it would have been nice to have an idea for a direction to go with some treatment. His doctor, Dr. Edward Mangosing, thought this new cluster of symptoms was due possibly his ammonia levels being too high and ordered bloodwork today. If it was high enough, he was going to admit him to the hospital. So that's where we may be tomorrow if the results come in. He also ordered a urinalysis, as urinary tract infections can often make dementia worse. Hopefully, we will know more tomorrow morning once we have the test results.

Welcome

Hi!! I am Phil's daughter, Ashley. I decided to create a blog about my dad's medical issues so his family and friends could keep up with his progress, but also for me to have as a timeline to look back on later if necessary, so if you see a post that looks like it's written to myself, that's why!!

In August of 2005, Dad was admitted to the hospital because he needed his gallbladder taken out. He was scheduled to go back to his job teaching science to special education children the next day, but was instead admitted to the hospital for emergency surgery that evening. He knew he was in pain and needed to go to the doctor, but wanted to begin the school year first.

His surgeon, Dr. Joanne Rink, was absolutely wonderful and was able to complete the surgery laproscopically, which gave his body much less trauma and stress than an open procedure would have. His gallbladder was grossly inflamed, discolored, and all around horrible looking.

After surgery, he was transferred to the ICU, where he spent several days. He almost died while in the ICU, and it was very difficult to watch. Mom and I took turns taking extra care of him when he was transferred to the medical floor. He was unable to feed himself, let alone walk. He fell while in the hospital once and bruised up his face and head very badly. However, we had lots of visitors and support from friends and family, which was greatly appreciated!!

When he was dismissed from the hospital after the third lengthy admission, things started turning around for him somewhat. He slowly rebuilt his strength, and came out of his mental fog. He has no memories for about a six month period, and has not been able to build enough strength up to return to work. He has been on disability since that time, but functional for the most part until very recently.

His confusion has been related to a buildup of ammonia in his system, and he takes a medication to help bind it and remove it from his body. He takes a number of other medications daily, some for the pain he is in following his car wreck when he was 18, and the aftermath of 4 different back surgeries to try to correct the problems that caused.

That is a VERY abbreviated version of the events of the past few years. I will continue with another post to let you know the latest news.