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.