45th Wedding Anniversary

Lots of things to be thankful for, but none more important than the time I have been married to Jan. Engaged for two years and married 45 years. My where did that time go. Jan and I have known each other for about 51 years. When she married this coach I don't think she realzed what she was getting herself into. I think we have moved somewhere around 14-15 times and Jan never complained or grumbled. Just pick up the children and moved to wherever. What an adventure!
I took her home for a few hours on this the 25th day of November. I parked outside the garage and told Jan I needed to go put the dogs out before I took her into the house. I did that and went back to fetch her. The dogs started barking when I got her out of the car. I sat her down and told her to get ready because the dogs knew she was here and that they were going to jump in her lap. I went to the back door, opened it....those two dogs never even looked at me, they proceeded to run to the living room and they both just pounced on Jan sitting in a chair. She was laughing and they could not get enough of her. It was fun moment for all of us.

Last Thanksgiving with Family

I hate to think about this being her last Thanksgiving with the family, but reality is present everyday when I see her. December 1 will mean that she has been in this home for one year. The time has flown bye. I'm not sure that the rest of the family wanted her with us at this time due to having special guests of their own, but I wasn't taking any surveys to find out. People have different reactions when they are around someone with Jan's condition and if they have never seen people with this type disease or just dementia, it can be a shock. To limit the weirdness for family I kept her at a distance and just allowed her to enjoy a good meal in a different setting. She ate everything that went toward her mouth. She was in very good spirits. We left early and proceeded back to her home. They were all glad to see her.
I never thought about it until after I left, but this is very likely to be her last Thanksgiving. Yes, it's the last for alot of things I know, but we have always enjoyed the family gathering at this time of the year.
A year ago Jan entered Autumn Leaves weighing 140 lbs, today she weighs a little over 100 lbs. It has been a turbulent year with her condition the last few months heading down fairly rapidly. We have greatly reduced her medications and have stop trying to steer the ship. The disease is winning against our best efforts and against Jan's strength. It's difficult for her to eat and for staff to even feed her. What happens in three months as this progresses? Six months ago, I wasn't sure she would make it six months. I don't think she can make another six months. God has been busy lately. The window has been wide open on days for us to remember this lovely lady. I know it will eventually close completely but God is helping me to perpare. I found a card that read: THE GIFT OF TIME WE CHERISH. THE GIFT OF LIFE GOES FAST. THE GIFT OF LOVE WILL NEVER END. AS LONG AS MEMORIES LAST.

Another Special Day

Autumn Leaves had a Thanksgiving Dinner last night and the place was full to the max. Miss Jan started the day being just fantastic, and seemed ready for a party. We had a great meal with Craig and Carrie plus the cutties grandsons a person could have. It was one of those magical days where the window was about 3/4 open for Jan. She was alert, talking, answering, laughing, very steady on her feet. I took her helmet off as I walked with her most of the time. Everyone including visitors who know Jan were amazed at her. The staff couldn't stay away from her. She ate all of her food and was lifting her head pretty well. I think God must give us these moments as a way for us to remember what she was like before this disease attacked her. Thank you Lord!
Today, I was there for lunch and she was still in good spirits. She was tired but was having another day. We will take the good days and remember them when we have the bad days, and it will help us get through those hard times.
Jan and I are about to celebrate our 45th wedding anniversary. I don't know what I'm going to do, but we will do all we can to make it special.
We have some pictures of yesterday and I will get them up tomorrow maybe.

Kami's Visit

Yesterday I was going to see Jan and was looking forward to feeding her lunch to see if she is eating. When I arrived, Kami was already there. We did some grooming of Jan and visited and then went to feed her lunch. Jan really struggled to eat.
Believe it or not we all laughed and acted like we knew what she was saying and we were right most of the time. If you talk to Jan and listen to her sounds real close she will respond to you some times. But if your not paying close attention you'll miss it. Of course I guess we know each other so well that even a grunt would be understood. She continues to have friends come by to see her and it is much appreciated. I wish we would pray that she would start eating again. When you see the loss of muscle on her frame, we all know that the heart is a muscle too. No change on the neck, it appears stuck. God bless all.

Rally has faded

Not to be unexpected it looks like our rally has faded completely. Boy her chin is locked on her chest and the muscles seems very ridged. It's not clear is she is having any pain with this condition. I know it is very difficult for her to get into a comfortable position when sitting or laying down. Today, her awareness was extremely low and strength was way down. She had some gibberish, but not understandable. I did change her once today as she was wet and the amount of muscle loss is becoming quite obvious from a year ago. She was able to smile and laugh some, but her condition is currently very weakened from even a month ago.

What a Day!

We were trying to use muscle relaxers to help her neck but it was also making her a zombie. She wasn't eating, wasn't talking, smiling, nothing resembled Jan. She looked bad out of her eyes, so I walk in and stopped that mess. It took a few days, but yesterday was worth everything. I hope to get a short video here that was taken by the nurse and you won't believe it. She was ecstatic. Smiling, talking, speaking to everyone, everyone. Sitting and crossing her leg like she is just one comfortable lady. We were laughing and cutting up, not knowing what she was saying, but when she raises those eyebrows and starts to jabber you know she is very likely popping off. We laughed and I left it with them but I couldn't get her out of my mind so I had to go back up there and did and everyone enjoyed the day. She was eating everything and smiling and cutting up.
These moments are a blessing for it is one more reminder and memory for all of us who witness it, what a sweet, lively, and fun loving person Jan's life has been. I thank God for raising the window just a little bit and am comforted that he is in charge of the resurrection.

Picture

We will take Happy

I have been out of town for a few days further delaying blogging.
We will take happy over agitation anytime and we seem to be pretty happy everyday. I would like to tell you a story of what happened with Jan and I as we were walking, but I'm not sure Jan would approve. It was to say the least a few minutes of belly laughing and mumbling back and forth as only two people who have been married for 45 years that know each other so well could enjoy. She understood and so did I. It was a fun day all day for that reason.
Her condition is about the same. Chin is still down on her chest. We are trying some muscle relaxers to see if we can get any improvement. Don't know if this will help. We had a therapist come out and they indicated that there was nothing that they could do and that they were afraid they might hurt her. She is not eating well and that is a big concern for everyone. It's difficult to feed her with her chin in that position. I have tried to get a picture for people to see. It's not very good but it is Jan. Hope you enjoy.

Still Jan

Yes, we are having a rally. Even though the chin is still basically on her chest, she is more herself, at least as of yesterday, than I have seen her in a long time. She was cracking everybody up with trying to get into conversations, smiling, being tempted with chocolate. The window was open yesterday.
Not sure how to describe this but I am amazed the impact she has on people. Even though she has a condition that is more difficult to handle I witness things and I say how proud I am of her, and right now she is fully aware of what I am saying, no doubt. Now she can't always respond, but when she does, there is no doubt that she is still the same women, with the same spirit, with that great smile. Oh how I love to see her smile.
The neck is a problem. As we all know this is a neurological disease that affects the entire body. With that in mind and with the condition like it is, I feel that this will be permanent. Nothing I can do, or anyone else. If it were to return to normal, it will be by Gods will.

She seems Happy

Not much to say about how Jan is doing because the amount of change is pretty small. The medication to help with the agitation seems to be right and working. However, her chin is still on her chest and I'm not confident that we will be able to get her head back to a normal position. Her chin is on her chest. This creates several things for her. It makes her real likely to fall and she has. Her eating is not 100%, probably just over 50%. Sleeping or even resting is somewhat of a problem because of the neck, if you can imagine. She is smiling at times and still communicating at times. She seems to not have any pain or great discomfort. It is to me but she doesn't seem to be bothered by it all.
She is taking less medicine now than at anytime. I believe that is true because we have cut back on her meds. Oh, one more thing. Due to her not eating I started cutting up protein bars and was feeding them to her. Well she started reaching out to pick up the pieces and going to her mouth by herself. It's been a long time since she has done that.
I would say that we are having somewhat of a rally due to her good attitude. We will take what we can get. thanks to all of your for your thoughts and prayers. Sorry about being slow posting. A lot going on lately.

Agitation?

Her chin is still down on her chest, it's some better but still not able to raise up her head. With that said she also, not agitated and smiling and chattering. She has gone back to eating and I'm stuffing protein bars into her when ever I can. She can still communicate at times. She will tell me "no" when she is through with the bar, easy to understand what she is saying.
The other medicine is zyprexia(sp). Right now she is not agitated and we are all happy. She is continuing to walk but is still a candidate for a fall. I have witnessed her run into door frames, corners and walls. Her nice red helmet has marks all over it from running into things.
I would call this a rally for Jan as things are better for her. I hope she can eventually get to where she can raise her head into the normal position.
Had a great trip to Lubbock last weekend. Too bad we got a field goal blocked and returned for a touchdown that was eventually the difference in the ball game.
Went to the Hall of Fame Banquet on Friday night and caught up with some of my playing buddies from the 60's. It was neat to see and be together. We have all entered into Texas Tech's Hall of Fame, what fun.....

Looks like a Rally

Wednesday was about the same for Jan. Her chin resting on her chest, smiling some but still unstable when walking. The nurse and I spoke about how long it would take for those drugs to get out of her system and she said probably thursday or Friday. Well today I walked in and started looking for her and I found her in a recliner in the living room. As I approached her I waited to see how she was and I was very glad to see her look up and smile at me and started mumbling something. I told her how very happy I was to see her smile and to see her eyes and I told her I loved her and I think she got a little tear in her eye, I'm not absolute sure.
We must remember that we need to enjoy the rallies but realize that they will not last, just enjoy the moment. I'm heading right back up there right now to enjoy the Rally. Thank you Lord for this answer to our prayers. For giving Jan some comfort during the struggle and for giving us this reminder of how very sweet a person she is.

Another Rally?

I have watched as residence of Autumn Leaves would fade and get bad and then through the miracle of medicine, back they come with smiles and what looks like an amazing recovery. But too often those rallies don't last. Eventually, the neurological disorder wins and the slippery slope continues. From a Homecoming Dance with smiles and interaction with people, to a head bowed where the chin is resting on her chest, weak and staggering when she walks, falling to the floor, yet driven to walk and not be in a wheel chair. Jan is still fighting an unknown opponent and one that is trying it's best to take her down. Jan is not a quitter, she will fight as long as she can. Of course, no one can be sure if she really understands her situation. We are at a point where the options are dwindling. The medical profession can only do so much. They try with the best medicine available but sometimes we run out of ideas. We are currently eliminating completely some of the meds that she has been on. If it has been one of the drugs she has been taking, maybe, just maybe her head will come up off her chest. It could be that nothing happens and the fact that she is weak and sometimes unable to sit up is just the disease. That is one of the symptoms of many of these diseases. My prayer is that we can make her more comfortable and stable. The aggressiveness may come back. If it does we will start all over trying to find a way to curtail that. I also pray that she doesn't fall and really hurt herself with a bad fall. I think the chances of that are better than 50/50.

wishful thinking I guess

Well the good news didn't last very long. She made it through this last Friday but over the weekend she began to really lean forward with her chin resting on her chest. She fell three times over the weekend and the staff tried to keep her in her wheelchair, but that was hard to do. She had very little to say since Monday but today she was muttering some things and she was able to smile and grin, but the leaning is bad. Try putting your chin on your chest and walking around all day, trying to eat, or be fed by someone. I feel so sorry for her. The doctor will come on Thursday and I hope he has some answers.
I am leaving town on Thursday, traveling to Lubbock for a banquet and to watch Tech and the Aggie's play on Saturday night. It has been hard to get away lately so I am looking forward to this time away. I hope everyone in your family is well and covered by the grace of God. That is my prayer.

An Amazing Time

This past Thursday, Autumn Leaves, the place where Jan is staying put on a "HOME COMING DANCE". What was going to happen during this time was my question. How could anyone, or almost, dance or enjoy themselves at such an event. With wheel chairs and dementia, pics, and all kinds of disease, how could anyone have a fun time, right?
Well, complete with three cheerleaders and catered food, plus a DJ playing music from the past as well as a decorated living room with ribbon, balloons, and things stuck up all over the room, it all got started about 4:30 p.m.
At first, very few danced, many sang along with some of the songs and clapped. Most just sat around and snacked on food.
I had no idea how Jan would react. We walked and she walked. I let her go where she wanted to go and would you believe it she walked right out on the dance area with the staff and what did she do????? She had this Hugh smile and started trying to shake her hips and everyone laughed and clapped and encouraged her to boogie. She didn't spend but a few seconds out there and then she was off exploring something else. She was doing very good. We made a 1 mg adjustment to one of her meds and now she is almost standing erect again. Some lean, but not nearly as bad as before and her awareness, at least for this day was pretty high. It was a fun time for all and I took Jan to the floor for the last song which was a slow dance and we danced the last song. We struggled some, but we made it through the entire song and she did great. I think she had a smile on her face the whole time. I will forever remember that dance. At one point the cheerleaders came over to speak with her and she lit up with this Hugh smile and started trying to speak and you could tell she understood that I was telling the cheerleader that she was a cheerleader and that she was recalling a part of her past that was very meaningful to her, and she still had some of those memories. It was great. As the day continued, the participation increased and so did the fun. I think everybody really enjoyed quite possibly their last homecoming.

Who Knows

Just a bit about Jan's condition. She is better, now define better. She no longer is agitated and striking out. Previously I have mentioned how she walks leaning to one side, well that returned. We have a pretty good idea which drug causes this but we are waiting and working with these new drugs. We are just trying to be careful and not cause the agitation to return. Her strength is better, but she may never get her strength back to where it was two months ago, that is just where we are.
She seems to be sleeping good and her eating is good. This disease is really hard to predict. It's hard to tell what is a symptom and what is the disease. What can you help her with and what do you have to settle for?
I had to make a trip to the doctor to get some emotional help. Seemed like I was crying all the time. He put me on some antidepressants and they have helped and I feel better since taking them.

September 19-21, 2011

Medicine can be wonderful at times and awful at other times. Doctors are smart, but not so smart about other things. So much that we do not know about these diseases. This week we are all happy that a smile has returned to Jan's face instead of the agitation we have seen in weeks past. Her smile is a great one and it makes the day for everyone where she lives. Gaining strength each day, walking again. Getting all over the building. One thing that seems to be returning is the walking with a lean. We seem to be pretty sure that one of her meds are causing this problem. We had this problem before and when we took her off of some of the meds she got straight, so we have it narrowed down. The problem is that we will accept some lean, as long as we don't have the agitation. But things are going pretty good at this point in time. thanks to everyone for their prayers and concerns.

September 17-18 2011

Saturday was a good day. Jan had reduced agitation, eyes were open and what I couldn't believe she was at times finding words to speak. Not repeating what she hears, but finding her own words. She carried on brief communication with the hospice nurse and myself, one or two word responses. Her level of awareness was up greatly from the previous week. One thing that looks like it may be a problem is the level of weakness she exhibits. We are using a wheel chair to move her around, but she is able to walk some. Not as stable as we would like but walking. We have taken her off of constant care with hospice due to her progress. I guess that is a good thing, but falling is still a possibility. Reducing her agitation was a major goal in changing her meds, and it looks like we are on the right track. Praise God.
Sunday was not quite as good as Saturday, but progress will be slow as she adjust to the medicine. Several times over the weekend she pocketed her medicine and spit it out once the nurse left. I witnessed it twice. She takes her meds with pudding, but still I'm sure there is a bitter taste to the pudding. All total we are making progress. I'm not sure we can expect her to return to where she was before the anger started. Her condition is vulnerable and the state of weakness may place her at even greater risk.
Thanks for your prayers and continued friendship.

September 15,2011

This is a post from seeing Jan yesterday.
Jan was very sleepy yesterday. I could not get her to eat, just a little food and drink. She basically could not stay awake long enough to eat. I certainly did not like the drug state that she was in and no one else did either. Her doctor showed up about mid afternoon. He described what was happening this way.
"We needed to get her agitation under control so we have done that. Now we need to back off of some of the meds to see if we can get a more balanced behavior. So we are eliminating some additional medications that should allow her to be alert again, but hopefully without the agitation."
Jan has become extremely weak over these last two weeks. I am very concerned with that and unable to know if it's disease related, or drug related. We won't know that for a while. To get Jan out of the room we have ordered a wheel chair with a reclining back so that we can allow her to get out of the room. On this day it appears that we may have taken a step back from the previous two days. I'm anxious to see her on the 16th and I hope by the weekend we have better results.

September 14, 2011

Jan was about the same for the most part. Still had some agitation however, but not as bad. Confined to her room and isolated from the other residents. Jan has continued to eat well, but needs some of her body functions to step up and be active. Concern for that has risen. I guess there is a real chance that her body functions will shut down.
Tomorrow we see the doctor who will further review her symptoms and the drugs she is taking. I may give you the doctors report in another posting from today. God bless everyone.

September 13, 2011

I waited to go see Jan until later in the day. I wanted to give the new medicine more time in order to see if I could detect any improvement. When I entered her room my hopes were high and I have to admit I was filled with anxiety. This had to work.
As soon as I opened the door, she was sitting in the recliner and she gave me a smile, a good smile, pointed her finger at me as if to say, there you are. She also mumbled something. That was so very good. She obviously recognized me. She ate all of her dinner and the jerking and agitation movement were all at a minimum. The last few days I have been saying to the nurse that Jan's awareness to things has been rising ever so slightly. It was a little stronger on this day. Thank you all for your prayers. Doctors can only do so much, but prayers to our God can work wonders.
We should all keep in mind that things can change quickly. Even though Jan is young, the outcome probably remains the same. But, working to make her more comfortable, no pain. We don't know how long this will last or if we will see greater improvement, but things do seem to be improving.
She did respond to some of my questions yesterday and it was so good to hear her voice.

September 12, 2011

Went to see Jan early as I wanted to speak with the nurse and the hospice nurse. When I arrived they were already in the office discussing the situation with Jan. Everyone is trying their best to make Jan more comfortable. Her doctor is responding over the telephone quickly and everyone is thinking about the situation. Of course I have my opinions as well and I know I can be a little overboard but I think that sometimes doctors don't follow or use common sense especially if they are dealing with a lot of patients. Jan's doctor has continued to win my favor in the way that he has managed her meds. He is not too quick to give up on what he thought was the correct course of action and jump to a new course, or new plan.
I found out that the nurse where Jan lives spent the weekend doing research on meds that could help Jan. She loves Jan and hates to see her in this condition. That pleases me very much, so we just cry together sometimes. I have to think that our new plan of action will improve Jan's condition. With so many prayers to god for relief and comfort this is going to work. In a week she will be better, I just know it, it has to work.

Last Two Days

Five days was enough to be away from Jan, so Saturday I was going to see her and the medical group felt that it might help. Jan remains isolated, still agitated as of yesterday. I walked with her and as we would near anyone the agitation became obvious, so off to her room. It's not easy to maintain her isolation. She constantly wants to get up and when she does, she might throw the lamp, if it's available, or grab anyone. We have taken her off of two medication to see if that might help and of course it takes time to get the drugs out of her system. I prefer a delayed change in meds or else it will be difficult to tell what is working and what is not. We are not going to add anything new until we have had a chance to evaluate what is working and what might work.
Saturday when I first entered her room, I sat on the bed next to her sitting in a lounge chair. Her eyes were closed and she seemed really drugged out. When I called her name I was thrilled that she recognized that voice, turning her head, and trying to open her eyes, even a little smile. So even though the agitation remains I think there may be a little higher level of awareness. On Sunday the same was true, some understanding on her part, but still a lack of control. My hope is that some level of understanding continues to rise within her as she gets further and further off of some of the meds. I really do cherish the few times when she can utter a few words like she did yesterday. I was having to help her remain in the chair and she clearly said, "Don stop". I haven't heard her speak in so long, I really logged that into my memory.

Her Condition- unchanged

Today, we are still trying to find what will work to decrease her agitation. She remains isolated for the most part from the rest of the residence. Hospice has placed a RN with her full time, not just a caregiver. I can't imagine what must going on inside her body. We seem to just want to keep on giving another drug. I can appreciate the position of the doctors and nurses, but it also opens my eyes to the real fact that there are more things they don't know than what they know. In this type of case patients become lab rats to see what works and what doesn't. I have allowed them to try most things they have recommended for this past week, no improvement. Information is available on all the drugs along with side effects. This morning I said no to a plan to add additional drugs to her medication. I also requested that we begin to look at what she is taking and eliminate things. We have been on some of these medications for over 6 years. We know that dementia is a problem, but long term dementia medication can have side effects. Are they really still needed is the question and could they be causing a problem? That is my question to the doctor and nurses. All I can do right now is pray that God will guide our path to get Jan some relief. Thanks to all of you for continuing to pray for us both.

Anything that works

We have changed her medicine and man that scares me. Those drugs are very powerful. I hope and pray that her good health serves her well during all these changes. Yes, at this point anything can happen. Stroke, heart attack, system shut down. You can't even just stop taking the drugs, you have to slowly take someone off the drugs. The drug Haldol is the main player right now. I give you that in case your interested in that sort of thing.
I am remaining at home today. May be the longest time I have ever been away from her. Today, we are trying to keep her in the room and away from the noise and activities. Hoping that the calm atmosphere, along with the new medicine can make Jan more comfortable. It sounds like restraint, but she seems to be okay with it at this point, I keep checking. A nurse is with her 24 hours.
I hear from a lot of people and I want you to know that you help me get through the day. Words cannot express how appreciative I am of all of you, God Bless each of you and I will give thanks for such friends.

Home Again

Hospice Doctor called early to discuss options for Jan. She is under constant care from hospice and we know that she did sleep through the night, but when she got up she was highly agitated just like the day before.
We discussed her medicine this morning. The doctor asked if I was open to changing her medication and I obviously am very interested in what we can do. Interesting that she asked how long Jan had been on Namenda, which is one of medications that is given to anyone who begins to suffer from dementia. It's been over 6 years that she has been taking that drug. She was going to discuss with another doctor the idea of taking her off namenda. I told them that I was open to this idea, as she can always go back on it if solutions are not found. We are discussing and they are considering very powerful psychotic drugs that are used to treat multiple mental conditions and helping patients control their behavior. Not the first time they have been used.
I will stay away again today and leave the professionals to do their work. I just pray that they can find some method of giving Jan some relief. These are all symptoms of the neurological system being under attack. It's a disease of the entire body and not just the brain. Your prayers are appreciated. Pray for comfort and relief from the urge to strike out at others.

Sitting at Home

I got a call from the nurse at Autumn Leaves and she recommended that I might want to take the day off as Jan was having a very bad day. Scratching, choking, pinching anyone that would come close to her. It was necessary for the nurse or the Executive Director to keep Jan in their offices. As you know Jan really likes to walk, but she would also come into contact with other residents and she just could not keep from attacking them in some way. We have call in hospice for constant care. AL cannot keep someone with her all the time. Hospice will also be working with the nurse and doctor to try and find a solution for Jan. New drugs don't necessarily guarantee success. Some work, some don't. It takes time to determine success.
I kind of felt like this was coming due to her behavior towards me the past two days. The best thing we can do for her is pray that we find a solution that works and give her some comfort.

Just when you thought

Well I really thought that we may have found a solution, but things don't always go as you think they are gonna go. Today, which is Saturday, she is back to being aggressive, putting her hands on other residence, gritting her teeth and not wanting to cooperate with anyone. Monday I will sit down with the nurse and put our heads together to try and figure out what happened.
Yesterday, she was a little sleepy, but still moving around and not being aggressive. She really seemed much better, so for any one of your who have been reading this blog, you know by now that things can change day to day, and they have.
I don't know if we can continue to keep her at this location if she continues to be aggressive because they can't be with her every minute.
She really doesn't look good out of her eyes, but of course that may be the look she wants to give me. She is not aware of anything that is going on, seems very confused.

A Better Day

While yesterday was very difficult to witness personally, today was a bit better. Better is certainly relative. Today she was less aggressive, even had a smile for me when I walk up to she. Did not get one yesterday, so a smile was nice. After I turned her over to the nurse yesterday, the nurse was ready with a new drug that we had all talked about and we had it on the shelf. So today, Jan was more comfortable about things in general, not walking like speed walking. She also will sit and rest at times, sometimes for a long time. She took a 2 hour nap after lunch. I took her a piece of Coconut Cream Pie, and she loved it, so I did good.
We will just need to wait to see how she adjusts to the new medicine to see if it really helps her over the long haul. It did today and I am grateful.
Hospice also brought her a new bed that seems to be an improvement, we shall see.

Life is not easy

Today, I went to see Jan early, due to having some things to do in the afternoon. When I found her she seemed okay. Did not recognize who I was, very sure of that. One of the caregivers wanted to take her to be changed so I went along to see if I could help. Jan resisted with force. Grabbing the caregivers shirt and just gritting her teeth and muttering ugly sounds. We decided to just check her standing up and so we did and she was fine.
We walked for a while longer and she just became more aggressive so I took her to her room to lay her down. She sat down in a big chair and was out in no time. Slept for about 45 minutes. Time for lunch so I got her up and she was out of control. Mad, trying to pinch me, pushing me. I have seem her that way one other time. It was in December right before I put her in her new home. I walked Jan to the nurse and she said she would take care of her and that she had the meds to help her. I left with two people trying to get Jan to sit for lunch. She was out of control.

Jan the Aggressor

Her condition seems to improve somewhat, then it gets worse. She leans to the left and then she leans to the right, or she doesn't lean. It's hard to tell or know what to expect when I go to be with Jan. I have seen her be aggressive toward men and women. It's a shock to anyone that sees it as they don't expect that of Jan. I certainly don't expect it, but she has shown that same aggression towards me. Certainly can't take it personal, but when you look into her half opened eyes and you don't see anyone there, you can almost just feel her slipping away. Her gibberish has really slowed down, doesn't try to speak much at all now and she repeats fewer and fewer words that she hears from others. Everyone is trying hard to find a way to keep her comfortable as best we can. Hospice is playing a bigger role as things continue to decline. It's hard to say that because we all want to do something that helps her, but with this disease and with normal dementia, very little is available. I pray for better treatment for these type of diseases. When this type of disease strikes, their story is virtually over, no more chapters to be written. The "Dash" has been written and all that we are waiting for is for the pen to be picked up and the date to be added. God have mercy and give us a cure.

No Answers

These past few weeks have been difficult. She has been to the emergency room in hopes of discovering what was going on, but we didn't get any answers. The hospital wanted to admit her to the hospital and do more testing, but I refused. They wanted to do a MRI to see more detail of her brain. The thought was that maybe she was having a stroke. They told me that if she was having a stroke that they would not use the powerful stroke medication that they normally use due to the bleed that she experienced in February. It made no sense to do an MRI then. They recommended aspirin for treatment. They are pretty oblivious to any form of dementia in ER. They kept trying to speak with Jan and I kept telling them she can't talk due to her disease, they really didn't seems to understand.
Jan has been walking with a lean to the left side, pretty sever lean. Her doctor has changed some of her meds and now she is leaning less. She had pretty strong twitches throughout her body, but they seemed to have slowed down.
Upon visiting with her doctor we determined that she has probably had this disease about 10 years. She has been diagnosed for 6 years and 3 months. At diagnosis the report was based on mental tests and the results were hard to take at that time. With that in mind her doctor said that she easily could have had this disease 4-5 years earlier and we just didn't recognize it. that is how we get to 10 years. Life expectancy with picks disease is 2-10 years. Jans good health has carried her a long way. The problems we are having lately are probably just the effects of having the disease for 10 years. She could have a stroke, stop eating, get a infection, or her body functions could just shut down. We are in the later stages.

One of a Kind

While Jan may not be like most of the residence at her home due to the difference in the type of illness, she continues to show me that she is and always has been one of a kind. She has reached her same weight that she was in high school, so have I of course but I'm carrying the weight she has lost, so I'm carrying hers and mine. :):)
I doubt anyone who reads this walks as much as she does on any given day. It really amazes me. From the time she gets up which is 6-7:00 am. she is on that floor walking. She sits every once and a while, but she is going and sometimes going fast. She will drag me by the arm so much that I let her go and wait at the end of hall for her to come back. No this is not normal for Jan but it gives you an idea as to the compulsive nature of her disease. She is driven by that disease. When I say Jan is one of a kind I have yet to meet a family, or friends who are visiting who don't already know Jan. They all speak to her and tell me that she always greets them with a smile. If she doesn't know them she will walk up like she is suppose to greet them, sometimes she speaks gibberish's or she will repeat what they say to her.
Jan has been there 8 months and things are still a struggle as far as care is concerned. People just don't care the way they should. I try to motivate them as best I can, but it doesn't seem to help.

Hard Falls

Over the past two weeks Jan has fallen twice, once very hard and hitting the back of her head, the other time she fell back against the wall which saved her from hitting the back of her head again, then she just kind of slid down to the floor. Certainly we have been very concerned about her head. I went out and found a protective helmet that is used for cycling. It didn't look so bad so I thought I would give it a try knowing that she would probably want to take the things off, but surprisingly she has kept it on now for two days and it seems like it might work. Funny thing about these places, I don't think I have heard even one comment from the other residence and Jan seems to be okay with it at this point. I will try and get a picture up soon of her in the helmet.
This getting old stuff is really for the birds. Seems like I can't get a much done as I use to and it seems like I have heard that from other seniors. Imagine that.

The highs and the Lows

I may have used that title before but it can pretty well describes the events surrounding the condition of Jan. Recently there have been days with just uncontrollable crying, and on other days, very happy and smiling and talking, well mumbling. The crying really does bother everyone. No one likes to see her crying so the nurse looks for meds to helps stop the crying. And of course most medicine for this type of disease can be risky. It is almost an impossible situation to figure out. The nurse is trying. New drugs can be very risky in combination with the drugs she is currently taking, so what to do. It's a problem each day sometimes. Life is not easy for anyone.

Highs and Lows

Days are filled with walking, she can't speak and her weight is down to 115lbs from about 142. She is eating well and time seems to be less of an issue but of course she has been in her home for 7 months. I can't believe it's been that long. Her health seems to be good and she sees a doctor about once a month. Jans case is the only one he is treating that has Picks disease and he travels to several locations seeing patients. I don't know if that's good or bad, but then again her other doctor we had for over 5 years never did much as far as treatment is concerned and we stopped her from doing further MRI's because it wouldn't do anything but confirm the fact that her brain is getting smaller due to her disease. Jan did not like doing the MRI's. She also is the only person at Autumn Leaves who can't speak and that walks constantly. I try to educate all the caregivers about Pics disease and most have never heard of it but seem to appreciate knowing the symptoms and why Jan is so different from the others. I think it helps. One thing that bothers me is that you never know what end of the spectrum she will be at when you arrive. She may be very high, or she may be in tears. She may be happy or very sad. That is hard to take at times and I just have to remember it's the disease.
I spend less time with her than I was the first few months. Been very busy trying to get caught up on projects around this house. I hope to get away again very soon and see friends I haven't seen in a long time and escape my routine.

Good Friends

Ever since Jan has been at Autumn Leaves she has had two regular visitors each week. They are Linda Letz and Linda Steele. I don't have a picture of Linda S., but I do of Linda L. They come to see Jan each week. Walk with her, laugh with her. They hold her hand and talk to her like they always have. There are times when Jan says one or two words and you know that the connection is still being made on occasion. To show devotion to a friend is truly a christian thing and a lovely thing to witness. I praise God for these two ladies.
This morning at breakfast one of our table members was absent from eating. The caregivers are very strict about giving out information to the wrong people and they do a good job of keeping things private. I couldn't help but ask about our friend who was a school teacher and one of the new caregivers told me by accident that she was in the hospital but that she would be returning soon. Also missing was one gentlemen that I took and interest in as often as possible. I tried to talk to him, shake his hand, pat him on the shoulder or sometimes led him to another location so that he wouldn't get into trouble. He always seemed to enjoy our contact. This morning I found out that he moved on to be with Jesus and I will miss him. That happens and will continue to happen in these places where many are facing that final end of life moment. It encourages me to continue what I have done from the beginning to show care, compassion and concern for everyone. There are times when it is very challenging because some residents are somewhat rude and don't mean to be. God has provided me with strength, wisdom and guidance during these times. So, I benefit from all of Gods children, even if they have Alzheimer's.

More Pics

Happy Birthday Jan King

It was a happy day April 1st, her birthday and April 2nd, her party. Friends came to visit along with family. We had cake for everyone at Autumn Leaves, plus Ice Cream so everyone got their sugar high. We had balloons and presents. But most of all we had Jan. She was very happy and just talking away to everyone. We don't know how many more she will have. God may call her home tomorrow or next month but at this time she appears happy, healthy and she is loved. Her "Picks Disease" will eventually take her away from us but today she still reflects a sense of humor, just like the same Jan we have all known. She can still raise those eyebrows and make a point even though we are not sure of the point.
I'm going to try and post several pictures I hope everyone enjoys them.

What a Blessing it has been!

I guess it has been almost 6 weeks since we went to the hospital. What a great time it has been. Jan is happy, smiling, and is in constant gibberish mode. As I look at her each day all I can see is that she is happy and does not appear to be hurting in any way. Her walking continues and I have been able to get her into a rhythm of taking a nap in the early afternoon and I really feel like this is helping her get through the day. Unlike 60-75% of the residence of Autumn Leaves, she remains very mobile. I look upon that as a real plus verses being in a wheel chair.
This past weekend I took off for Lubbock and the annual Spring Game for my Red Raiders. We had a golf tournament on Friday along with Lunch and dinner at the Red Raider Athletic Facility. It was great. Saturday was the day of the scrimmage and also a baseball game against Nebraska. It was all great fun and Jan was in the hands of two very dear friends, Jenni New and Linda Letz. Through the science of text messaging I was able to keep up with her situation. I never got concerned about Jan. She was with Godly friends and family was close if needed. I really do appreciate them very much for allowing me to be away for 3 days. It was refreshing.

Four Good Weeks

I am happy to report that we continue to have good weeks for Jan. Except for the weight loss she has held her own. She has had visitors whom she recognizes and a visit from her special dog, Max, and he was great. He visited with everyone who wanted to pet the dog. One time Jan walked off and Max did not take his eyes off of her and as soon as I started to walking her went right after her and she was around the corner but he found her.
I think there are going to be problems at every place to some degree. They are not going to do it as well as I do. We are attempting to address the problems with the staff and hope we can get improvements in the problem areas. Jan presents a very specific set of problems. She is mobile, where most of the others are not very mobile. Jan cannot talk, most of the others can talk. Jan can't understand most things and cannot follow requests. She can't communicate if she is having problems or in pain. She cannot dress herself, brush her teeth, spit, or turn on the light. She can't find her room, won't sit down when she is being feed and easily distracted by any sound or problem in the dining room and wants to get up often while they are trying to feed her. She can't tell you she doesn't like the food. If she doesn't want to eat you can't make her. She can't participate in the activities, crafts, word games, but she does go into any office door that is open with people inside, so you can see she presents a unique set of problems for anyone. All of which is no excuse for being improperly cared for by the staff.

Losing Weight

While Jan has had three good weeks, we are very concerned with her weight loss. Lost 25 lbs in three months. Of course you have to realize that while at home she was eating more fast food and my cooking most of the time, which probably led to her gaining weight, plus she could not walk like she does now. She walks most of the day. It's very hard for her to sit for any length of time.
One of her best friends visited Thursday, Linda Letz. You would have thought she knew what she was saying, lots of gibberish and laughing. Jan loved every minute of her visit. I will post pictures soon.

It was a Great Day

I was lonely to be honest and I didn't want to spend my time with Jan at her residence so I went and got her and it was just the two of us for about 7 hours. It was a good time for both of us. She had a shower and I washed her hair and blew it dry. This sounds easy and it really was but the hard part was persuading her to let me put her in the shower to bath her. Very unsure of everything, but it worked out.
After the shower I laid her on her bed and she went right to sleep and I don't think she moved for 2.5 hours. All the noise was gone and she was in her bed and knew it. We had both dogs at the groomer and we went to pick them up and took them home, we got something to eat and took her back at 7:00 pm.
It was my opportunity to just cover her with care and warm feelings. Her health problems will not cure themselves so this time was special to me. We may not have this time again and I know that. Every time I am with her I can't help but think about that one thought. Every second with her is very special. Just special.

Runny Nose

Today I took Jan to get her hair cut. Christi has been doing her hair for years. She is great with Jan and makes her feel very special. God loves her and we do too. I was somewhat concerned about Jan today because she had this very dry cough and a runny nose. Now how can you have a runny nose and have steroids running through your system? Still very chatty and speaks clearly about some things and while we were driving she would make comments about car colors and about slow drivers. It was a scream. I ask her if she just wanted to get over here and drive and she said, no, no. Still has that sense of humor.
Her mother called yesterday while I was with her and she said hello to her mom and told her that she loved her. I think it made her day.
Thank god for good days, give us more. Bless us as you have for 44 years with good health, good spirits and abundant friends. Thank you Lord for bringing this woman into my life long ago as a friend and then as a mate. What a wonderful wife, mother and grandmother she has become.

Good Results

We are very thankful and happy about how the new treatment is working. Jan has been more than chatty. She is attempting to call people by name and achieves it on occasion. She will approach everyone with a smile and gibberish. The new residents at Autumn Leaves really don't know how to respond to Jan as she smiles and laughs.
This past week was full of friends and guests and she responded well to all of them. All the caregivers are glad to have Jan back like she was earlier.
On Saturday it was a beautiful day so I brought her home to see the dogs and it is hard to describe how excited they were to see her. Max, her dog, was running right past me to get to her. She sat down and he was right into her chair by her side. She took a short nap and he was at his normal place which is behind her at the bend of her knees and touching her with his entire back.
The first picture is Jan's Aunt Betty and cousin Diane from OKC. the next is Jan and I taking our picture in the mirror.

How long will it last?

Well the treatment does seem to be working. It's a process of giving her 3 pills for two days, then two for two days, then one for two day,and then we stop. It seems to be working, but what next and how long will this treatment help her before we have to do it again.
Yesterday while I was up with her she was really trying to talk, she even said that she loved me and she has not said that in a long time and this was without prompting her to do it.
As with any place there are bound to be some problems. Jan is on a 30 minute watch so someone is checking her every 30 minutes and sometimes they do it right and sometimes they don't. Its really too bad that Jan cannot partake in any of the activities that they have like the crafts, singing, exercise, bingo, etc. Jan walks pretty much all the time and cannot sit for long stretches of time. Since she entered Autumn Leaves on December 1, 2010, she has lost some weight and I going to find out how much. Some of her friends are coming by to see her and some are sending cards. Anyone can come to see her, just stop after you enter the first door and right the door bell and ask for Jan, also sign in on the log book.

More Surprises

Last Thursday we rushed Jan to the Emergency Room due to her reaction to our examination. We thought she had another UTI infection and it had gone Septic. That was not the case at all. All the doctors thought that she had fallen. We are not aware of her falling either at home or at Autumn Leaves. She was given a strong shot of steroids while at the hospital on Thursday afternoon. Upon reflection she began to get better from that point forward until she was released on Tuesday next week.
Last night the same signs began to return with increased vomiting and dry heaves.
A doctor looked at her today and we have started her on steroids again to help relive the pressure. I pray that we can find a treatment that will allow her to lead a normal Alzheimer's life and not one filled with vomiting. Of course, what is a normal life for someone with Alzheimer's, they are all different in most ways.

From Baylor Hospital Dallas

It is Tuesday morning and it looks like Jan is going to get to go home. These past few days have been very trying for her and watching it has been no fun either. The good thing is that our decision to not do surgery has lifted a Hugh load from our shoulders. Our family and friends have been very supportive and we thank and praise God for their prayers and support. We know where we are destined to be, all together, with no pain, worries or aliments. Being in the presence of god and family daily. Amen, Amen!!

Our first meeting with the doctor was a little confusing and difficult to imagine. We gave him no answer. On Sunday, the same neuro Dr. Came by at 3 pm Supper bowl Sunday. At the same ttime another Dr that represents Texas health resources was there at the same time. Imagine that, 2 dr at Jan's room at the same time, and on Super Bowl Sunday. God k new that we needed help and he double teamed us. If you ask me if I was in the same situation as a person with dementia for many years and can perform no activity of daily living and getting a little worse each month do I want you to put me through a painful surgery with unknown reprecussions and endless list of risks and no guarantee that it will work, then I would say, please don't. In Jan's situation she wouldn't want this either. Jan and I had talked years ago about DNR and other such things. In this case we are following Jan's wishes.

From Hospital on Saturday 4:00am.

Well I just spent an hour posting what has happened the last few days and somehow I lost it all, will try later.

Fears

This week has been a good week for Jan, lots of visitors and they are appreciated so much. Her Aunt is coming to see her this weekend and we will get pictures for sure. Thank you to all of those taking the time to visit.
This is a dreadful disease, today I read a report that said that their will be 10 million baby boomers beginning to turn 65. 1 in 8 will either die because of the disease or will be living with the disease.
Being with Jan everyday I can see the changes in her and they are not good. As I have said before the basic understanding of language is about gone. Oh, I know every once and while that little window opens and we see things like her speaking or making a comment at the appropriate time. Things change very fast with this disease sometimes. I just want to scream out and say will somebody please do something to help my wife and all of these people to prevent this disease and help us maintain our loved ones. This disease is in the top 10 of diseases that cause death without prevention or cure. Just think if we could find the cure for diabetes, cancer, and dementia. Just think how much that would save. It is estimated that for Alzheimer's alone it costs 172 billion dollars a year for care and treatment. God help us..

A Few Changes

It's easy to get down as the progressive disease advances. Anyone around it should know that it is going to get worse. Jan's condition is exagerated by the fact that she can't speak. Of the residents I can only think of one that has a similiar condition as Jan. Dementia does cause speech problems for many but most have the ability to pronounce words, Jan will repeat what you say at times and it is clear, but most of the time it is just jibberish. Add to that the fact that she cannot participate in any of the activities like singing, bingo, crafts. She is not the only one in that situation but it really hurts to see that she can't do anything but walk. I would give anything if she could sit and watch a football game with me like we have for 44 years. I feel like her situation is getting worse. Her ability to follow even the minimum directions, the most common like stand here for one minute, or please sit in the chair, or use your fork, or you can hold your glass. At times she seems totally unable to understand or the ability to follow directions. This seems to me to be something that she is losing.

This past weekend I went to church on Saturday night and it was so good I went again on Sunday morning and sat with my grandchildren. It felt real good and the sermon was a powerful message that struck me dead center, but I was not alone. Life is tough, and if you don't believe it, just wait. We can be miserable like we don't understand our destination or we can be different because we know the destination. As Christians we must be an example for others in good times and in tough times because we know our destination. God Bless

Exciting Week

This past week has been a good one for Jan as she got to see two of her close friends and her mother, brother and sister-in-law were down on Saturday and it was a very good visit. Jan recognized everybody and interacted with everyone to some degree. It was fun for her from all respects. This was the first time that Jan's mother had seen her since moving here to Autumn Leaves. I was worried about the togetherness, but it all worked out great. I have some pictures.
Jan is having a runny nose or sounds like she may be getting upper respiratory infection but we are trying to get a handle on that. I hope some of her other friends will visit sooner rather than later.
With her mom we all had lunch together, not Jan, at Chilies and that group has not been together in a long time, it was fun.

I am a distraction

Jan came home with me on Monday, January 10. After her lunch at Autumn Leaves, I decided to take her home for awhile to be in a more quiet atmosphere with me and the dogs. One of the things about Jan is that she is easily distracted with anything going on or being said. If I sit with her to help her eat, she looks at me and trys to read everything and every expression on my face. It's too loud in the dinning area and that is a distraction for her. Her ability to use a fork or spoon are poor enough and you add the distractions, she struggles to eat what is on her plate. I have decided that I should not be in the dinning room while she is eating, so I leave it up to the caregivers to help her. I returned her after dinner and she was fine.
We had a 30 day review with the officials and they responded pretty good. This Autumn Leaves has not had a Director for several weeks, but the nurse and Regional Supervisor listen to my complaints and have responded to each concern.
Craig's family was up this past week and the boys were the entertainment for several residents. They were quite entertaining to me as well. Also one of Jan's longtime friends came for a visit and she recognized her and responded to her, Jan was excited.

First Trip Away

Jan has been doing so good I couldn't wait to take her home for a few hours to see her dogs so yesterday became the day. We bought lunch and headed home. First time for her to be in the car in 32 days, little chilly, but she enjoyed the ride and she did great. After lunch she sat in her chair and I wrapped her in a blanket to make her warm. She sat there for maybe 2-3 hours just relaxed and sleeping. I gave her a shower, washed her hair and got her dressed in a warm up suit and took her back about 4:30. She may have been somewhat confused by returning to home but she didn't overreact. They all welcomed her back and said we missed you and she just jabbered some sounds, smiling and it was a good day. Thank you lord.
It was very quite at the house compared to her place, so I feel like it was a good change of pace for her.