There is nothing like the crisp crunch of leaves drifted into piles

It has been a long time since I posted. Things are evened out somewhat. Jack spent a week in a Behavioral Center because he had made some statements about seeing his deceased mother, sister, and brother. This scared some nurses and they reported the statements to his primary care doctor who recommended a psych evaluation. At the end of the week I asked what they had discovered. The doctor said, "He has Parkinson's and some dementia that goes with the disease."

Since we have known this for some time, I felt the time had been a waste. However I was wrong. The doctor at the behavioral center and the neurologist, consulted and came up with a medication that smoothed out the emotional problems and didn't do much for the physical. But I had been told that when you work on one area the other will become a problem. Right now he does well enough if the gets all his medications regular and on time. Because the nursing facility hasn't had many Parkinson's patients they have had to be educated on Jack's problems with the legs. If he does not get his medication for Parkinson's at least an hour before Jack wished to transfer to his power chair and go to the dining room or anywhere else, the muscles in his legs freeze and he just can't move the legs. We are finally getting through to some of the staff that thought he was just kidding about being able to move. With several shifts and lots of changes it just seems communication isn't always effective.

Jack has also had a cyst on his right hip for a number of years. Earlier this year a surgeon told him it was not a problem and could be removed or not , he could choose and of course Jack said he would just cope with it. Most of the staff really didn't know about the problem and when he ask to sometime stand and reset in his chair.... they thought he was just being troublesome. Even one of the main nurses didn't know the cyst existed. Until I called her to come help me move Jack and look at the area since he said it felt wet. It began to drain and treatment has began to heal up this area. I am glad it is healing but it is very painful and the treatment also quite painful for Jack.

Just today he said his hands would not do what he wants them to do sometimes and he becomes very frustrated. He is finding these symptoms come and go and last usually less than a day. I quit taking him out because the ability to use his legs, his hands, and the sudden onset of fatigue created a greater problem than I could handle by myself. We miss our outings and I know that I could hire someone to go places with us but I still don't feel safe taking him out of the professional environment.

Jack has been in the nursing facility for almost eight months. It is still difficult for me to stay at home. I have breakfast with Jack almost every day and usually go in at least twice every day. There have been two days I have missed and those were very long for both of us. The professional care has really improved his condition. He had some really bad situations but generally he is so much better.

The cooler weather and the wind gusts that sent the leaves swirling across the lawn and creating piles of color, are both welcome. Maybe the change in the season will bring some new things to look toward.

God's Speed and Blessings.......

I AM STILL HERE!

Sounds like I am shouting. Well, perhaps that is the way I feel. Things are not going well, and I am relying more and more on those who have been through this experience with Parkinson's.

Stages come and go and I keep stumbling over the remains of each day. I understand more about my mother and how she strugged to just get up and go though the basics of sunrise to sunset. I keep looking for something to really replace thinking. I loved the casino with Jack but can't take him now and it is too expensive for regular therapy! lol

He asked for a comfortable rocking chair in his room for me and I find I can take a book to read and fall to sleep quickly. But for Jack that isn't much fun watching me sleep, he says at least I am there with him. I have missed one day since he entered in February and that was because of the flu that I caught right there in the home.

Keep my in your prayers....for us it is just one day at a time.

A busy week..............

Today is fairly open..............Tuesday Bible Study (lead by me) Wednesday take Jack to neurologist and Bible Study in evening, Thursday Audit committee meets to "do" the church's books...Friday take Jack to Wound Clinic (hopefully this is the last visit) When wounds are both completely healed......Dr.Lee says Jack can take a shower....it has been 7 months!!!

Living alone these last 4 months have brought some changes. I am certainly more careful about things that could end in an accident.....like climbing ladders. I carry my cell phone in my pocket and sleep with it. I panic when the phone rings. And I am not as neat and tidy as I thought I might be if I lived alone....thinking oh well who will notice but me and the four legged felines.

And I really am trying to learn to stay at home.........this house is so cold emotionally and lonely that I rush around in the morning to get out and go to the nursing facility and then to do anything that is on my "list" of needs to do. I need to learn to stay here and really do some things about cleaning out closets and emptying out drawers of stuff.

Well, it is almost 7 and I am hurrying to get out of the house....will I ever change?

When part of you is missing................

Created a long blog.......and accidentally hit the wrong key!
Oh well, you only need to know that things change and life changes and yet it is the same.

The Parkinsons progresses....Jack isn't happy in the facility but he is better with the care and the environmental advantages.

I am lonely just like Jack, this isn't easy for either of us.

Those of you who have experienced this understand......those of you who have not as yet.......will some day understand. And yet I hope you do not have to suffer this kind of separation.

The Fourth of July approaches.... HAVE A BLAST!

Each day holds precious minutes.....

Jack is still doing fairly well. Night terrors, confusion, and other problems seem minor to the results of withdrawl from one of the medication he was taking.

We have chosen to make every day special in some way. We go a lot, take walks (me walking=Jack chairing). Shop a lot, eat out, go to church, work with music and just enjoy quiet times together. My daughter calls it our honeymoon again. And perhaps it is the eye of the storm before something else happens.

I really feel it is the lull before the storm but hoping the storm will be not so severe and we can continue to enjoy our lives. Someone said this week that Parkinson's is a cruel disease. What disease isn't cruel in some way.

He enjoys working with his music and getting back to that is like therapy in itself. He walked quite a bit for awhile but his legs because so tired and weak again that he has slowed down again. I understand that the legs don't really return to the former strength. He doesn't know this.

The wounds on the legs are very near a complete healing. We are anxious to have that day arrive because then Jack will be allowed to take showers again. It has been 6 months. His doctor said this week she just didn't realize the difficulty of doing without showers-- that she tells her patients with wounds. She just returned from National Guard Duty and had a week without a shower and she realized anew how difficult her requirement was.

Tomorrow is another special day. We will spend time together. It is Sunday and he will come to church / dinner and music in the afternoon. He has invited people from the home. Some staff has said they plan to come and a resident will come with us. It promises to be a good day. Everyday has to be special now.

HE'S BACK!

He is back! Jack isn't home but his confusion is mostly gone. We put him back on the anti-depression drug and he is doing great!

He is sleeping well most nights and I don't get those scary phone calls in the night from the nursing home.

I have been eating lunch with him in the dining room and he is now going there on his own. Service and food is like a nice restaurant and quite a change from the tray in his room.

I am a much happier camper!