Jack is improved.............

Avery nonresponsive patient.........became amusing, joking, hungry and thirsty on Wednesday. Medicine and prayers are a teriffic combination. He is not out of the woods and this is the third day which often means a rough day.......he was doing ok at three this morning but a bit confused and disoriented. The nurse said this was not unusual......and certainly not for Jack in an occasional situation (actually a lot of the time......drs say a lot of it is meds).

Jack is very ill........

Jack was taken to the hospital yesterday........very ill. I had no idea it was as serious because the same symptoms had occured before and he had spent about 3 hours in emergency and came back to the nursing facility.

The emergency doctor told me he is "septic" don't know if that is the way it is spelled but he has an infection all over his body and in his blood. He told me I had the right to know he might not pull through this.

Several specialists were called in, his primary care doctor,etc in total four and they all said the same thing.........I called his daughter and she should be here today. My daughter is on alert if I need her but I have a strong faith just as Jack does and I feel he will pull through this illness.

We ask for your prayers and we know all of your are with us as we stand against this invasion of his body.

I knew this day would come..............

I have always known that someday I would go see Jack and he would not have any idea who I was. Today was really the first when I knew for sure that he did not know me and my presence angered and confused him. After breakfast which was not enjoyed by him or me......much of it spilled, eaten inappropiately, or just refused, I knew I had better spend the rest of the day doing something else. Till he is over this UTI and is much better...........I seemed to set him off.

He was really upset when I didn't let him put salt in the sugar container! Hee Hee.......what a morning that was!

Thankfully they didn't put syrup on his french toast but brought a container........or sticky hands would have been the order of the day. When you use french toast as part of a sandwich..........it can get messy.

Jack has always been so affectionate and this morning he didn't really want to kiss that strange woman! Well, maybe that was good! Except I was that strange woman. I have to laugh to keep from crying..........work, sleep, reading, I have tried to keep my mind busy.

Well, there is always tomorrow!

PLEASE FALL COME QUICKLY!

The hot nights and even hotter days have been around just long enough for me to look forward to fall. Fall or Autumn has never been one of my favorite seasons. Everything always seemed so drab and dead. But years ago we went to the East coast to see the colors and I really enjoyed that trip. What I have failed to notice that here in Oklahoma we have a vivid range of colors of our own. After the extreme heat and hungry grasshoppers my fall flowers have already tucked their heads and refuse to even look like they might burst forth in color........rats!

Well there is always next year!

The Notebook............

Well, I just finished Nicholas Sparks's The Notebook..............please do yourself a favor, and read it if you feel strong enough. It is a beautiful love story that is rare indeed but it is the story of what diseae and age does to the body and relationships. I thought it would be a short read but could not read very long at a time especially at the end. I actually feel better having read the book. I feel I am better equipted to say Good-by when the time comes.

There are times when one reflects on life and the road never traveled that lays ahead. Younger family members should read this book as a manual in dealing with aging and the aging relatives. Although fiction one feels that this book is probably more based on true facts that textbooks on a medical shelf.

Those of you who haven't thought about it.............it is time to write a notebook yourself on your youth. I was telling my daughter something about where I had lived as a child and she commented that she didn't know that.........and I realized somethings will become dust and gone if not recorded for our families to enjoy on a stormy evening in front of a real wood burning fire............not a fake fire in a fake fireplace.

Planted some new iris plants today........different colors.........filling in the enply places in the flowerbed and hoping for some bright colors. Mentioned I was going to an Iris Sale and my daughter discovered a whole new part of my life.

It is hard for my to imagine the generation who does not know how to hang clothes on clothesline. We have elected to keep the traditional and antique..hee hee clothesline in our backyard......things do smell wonderful after hanging on the line. And when the dryer dies there is always an option.

Jack is having some bad days.....I go but leave the nursing to the professionals. I am learning when I am actually better now at letting someone else take care of Jack. I am the visitor, the comfortor, the loving spouse, and they are the caregivers. (But I am the one watching and reminding and asking for.........still caregiving! lol)

loneliness

The nights are long........the days sometimes are even longer. I spend a lot of time at the nursing facility where Jack now lives, but it still doesn't fill the empty void at our home.

The responsibilities of the house and the community felines just doesn't fill the hours well enough. I need a hobby that totally comsumes my attention..........

I have painted but have no interest there anymore.

I took some linedancing classes but my feet have had so many fractures since I have been in Oklahoma that they just would not hold up to the "beat"!

I read a lot but even that sometimes reaches a limit.

Any suggestions?

The phone rang at 3:45 am

The nursing home called...........Jack had a fall, but he was alright. He is one of the many patients that have a star on their wheel chairs or power chairs because they tend to fall. He had trouble sleeping and had been to the nurses' desk.........back to his room and from his power chair to his lift chair he lost his footing.

I have learned to listen to the nurses and if they say he is alright I take their word for it and he had not called me so I didn't go to the facility. Although I didn't go back to sleep. Later he complained of this hand hurting and today mobile x-ray came out to check out the hand.....all seems to be ok.

Don't we all sleep with one ear for the phone?

When the phone rings..............

Is it just me... or does everyone who is a caregiver, or has someone in a nursing facility or hospital, just always think the worst?

I still feel like a caregiver because I am constantly monitoring my husband's progress, changes in behavior, reactions to medication, and general well-being.

Sometimes he calls ( and gratefully he can still use the cell phone) and he is just not himself and the next time he is jolly and full of a funny story. Today I just have one of those feelings that things are just not right but can't put a finger on it.

Maybe because it is a full moon and the hottest day we have had this year.........when the heat indext is 112 degrees you just feel different. However, I just wonder how he really is medically. Even doctors don't always understand how a disease progresses in each person.

When the phone rings I always just want to expect a positive call, perhaps that is always the best attitude.

GOODNESS IT IS HOT!

Today....right now........that is the time!

Sometimes one begins to wonder about tomorrow........stop right there! Today is all that is important.

There will be good days when I can understand all that Jack is trying to communicate to me. There will be days when I have no clue. But the thing that he has never had trouble with are the words "I love you", and making that very plain.

There are times when we get so caught up in the 'what is' and 'what will' that we forget to just enjoy the 'just now'. A wise person told me once.........grab the moment and hold it close, that is the essence of memories.

I have spent so much time at the nursing facility the past year and a half that I feel I am a part of the building. The staff are good and try to do everything possible to make the residents comfortable. Sometimes we just are so focused on our loved one that forget that the patient needs to just be a part of the whole and not a "me".

I am learning to help Jack wait.........and waiting is difficult, but having every wish and whim immediately granted isn't good either. As the Parkinson's progresses the personality changes and impatience is the first emotional signpost I have been able to make out. Jack is impatient with himself as well when he can't communicate or move the way he wants.

I am also learning to judge what is fact and what is supposed fact. A good example is: Jack has just received his meds........a few minutes later he is complaining that they are late again with his meds.

From time to time I hear about the second story of the building and he has found how to get there. (There is no second story.) Sometimes I get call from Jack about a problem and after I drive 10 miles to the facility, he was mistaken, and greatly embarassed. Helping him through these painful times is just part of loving your spouse.

Most of all I am learning that showing LOVE is understood and communicated without any barriers in the mind. The brain can be a broken machine but the love cells still function.

The Oklahoma Irrigation story that you might have read in Patrict's blog was a reality but he would laugh that the irrigation ditches I dug that year are back and there is a constant drip into a large terricotta bowl and then there is the overflow under the elm trees for the "town cats" to lay in a cool damp place during the days of expreme heat warnings. These cast off animals are the furry things that keep my blood pressure low, my sense of humor in tact, and my cat food budget constantly strained. But my Mother (passed in 2008), and Jack constantly reminded me that these are God's creatures and not to let them starve............or get thirsty ..........or too hot! lol

Sometimes it isn't easy to change things........isn't possible is more like it!










si

A Shower to cool the air........and make lots of humidity!

Well, we received a welcome shower last night but the counter part is lots of humidity. When the nights are 80 what do you expect during the day?

Yesterday was not a good day for Jack. He had chest pains and his legs were so painful as well. The nurses finally told him that he could expect the pain as part of the disease and they would help as much as they could with medication. The chest pains seemed to be indigestion and when I alerted the nurses they took care of that. Jack doesn't want to be a complainer so he won't say anything when he is in discomfort. He lets me do that! LOL In fact he felt so bad he ate very little lunch but in the evening they brought him his evening meal and he was looking forward to it when he gave me the 5 o'clock call.

Days are difficult. I find that sometimes it is just hard to go to the nursing home. I know I will find problems, discomforts, and in general life breaking down. I understand why many don't go, although the visits are so looked forward to by the patients. The smells, the pain, the constant reminders that life is so out of their control. Some of us who are there everyday become hardened to the obvious and just look into the eyes and try to make smiles. I do lots of back rubs. One lady said, "She always rubs my back when she goes by and it feels good." I also give a prayer in that touch that the day will go well for that lady. Jack wants lots of smooches.......to keep him reassured that I love him. Sometimes their situations are not very lovable but the patients stay as lovable as ever.

I do a bible study every week,sometimes I forget to sign in.......like this week. I must do that! We have been trying to do a little craft project with the bible study. We made pots of flowers when we studied about the potter and the clay. This past week we decorated flyswatters when we talked about swatting the "flies" that annoy our daily walks with the Lord and with others. I found some bibles at a thrift shop.......many come to the facility straight from the hospital with few or no possessions.
The bibles are already finding homes. It helps to really know these people, and find ways to reach out to them. If I can inspire them for a few minutes every week, that is great. We average from 12 to 14 and that will grow I hope.

I have been going to an exercise class. Yesterday, I gave up early after 45 minutes of constant movement in a hot room, I decided I had reached my limit. We have a fan but it is just not enough to keep the air moving and do any cooling. I went right to the grocery store which I knew would be cold, and soon felt better. The heat and humidity are really wearing us down and summer has just begun! lol

Blessings on all of you........caregiving is a big responsibility. Mine has shifted somewhat but I still am constantly involved with my husband everyday.......usually twice or more depending on the activities of the day. The facility is 10 miles away but sometimes I just have to go back again! smiles No one knows the weight on the shoulders until they carry the load!

Father's Day

Holidays are sometimes traumatic. I purchased a rather expensive men's Cologne for Jack for Father's Day. Well, we have had some things "walk", usually small things like room spray,etc. Sometimes his glasses disappear but seem to reappear with a little searching in nearby rooms or "walkers" pockets.
This time all the searching and questioning seem to turn up nothing. I happened to have the receipt because the store told me to return it if the scent was not agreeable to Jack. He is very sensitive to odors.
After an investigation they said they would give me a check for the item. I told them to forget it, things like this could happen with lots of visitors, etc. But they insist that is Jack's home and to take things from his home is definitely wrong.
I think they have some suspicions about the disappearance.
But otherwise the day was fairly nice........roast pork which neither of us like.........but I had a salad for Jack and we shared the vegetables on his plate....and I had made a cheese cake for him. We faired very well!

The symptoms are becoming more pronounced. Jack is very agitated, easily brought to tears. He has threatened the staff because they are not being good to him. His threats are to turn them in....to whom? Or into frogs? lol Anyway they seem to understand this is the disease.
His eating habits are really getting messy and he gets really upset about the food being wrong for his diet. Which is heart healthy. There are some mistakes but for the most part quite acceptable. Just not to him!
He keeps commenting "he is afraid". He can't tell what he is afraid of or afraid of what.......but I think he is feeling the loss of control of his life. Yes, that is very frightening!

Blessings for the day to all!

I Wish I Knew When the Storms...........

I finally had a chance to talk to the nurses that were with the doctor when Jack said that the doctor said he could go home...............well, actually Jack asked if he could go home and the doctor gave him the standard I will talk to the family but at this time you need to be right where you are!

One nurse said that is a typical male.........only heard what he wanted to hear! But even though it might be funny to think about it after the fact it caused some loss of sleep and real worry. The head nurse said he wants to go home so badly that he heard just that. Yes, Jack wants to go home but I am not able to take care of him 24/7 like they can at the nursing facility. Actually I could not take care of him for an hour probably because he does need a lot of attention which he doesn't realize that he gets. Nurses are always patroling the hallways looking in rooms and checking on patients. He doesn't always see them and doesn't realize that they are there.

He has not mentioned the idea again so guess somewhere down in his heart he knows that this isn't a possibility. At least I don't have to address this problem today! The home moved Jack out of his room for about 4 hours, painted, stripped the floors and put on 6 coats of wax, did the windows,etc. They also wanted to shampoo his chair and came to the house and moved another twin chair up to the facility so there will always be two chairs for him to use. Also, there will be a place for me to stay if I need to, or can rest during the time I am there. Jack does not use a bed, but an electric lift chair that flattens out into a sleeping position. Because of his lack of mobility since hip surgery he is not able to lift his legs on to a bed and when he gets into bed he can not move himself about. He found out just how difficult that was again when he was in the hospital in August if 2oo9. With the lift chair he can sit up, stand up, then sit down again and lay back to rest.

The day they came after the chair he had a real meltdown.........said he was 80 years old and all he had was a room and two chairs to his name!
He had been "hearing about women who took everything their husbands had", and they were bragging about it! Another event with the brain playing tricks...this is happening more frequently. He hears, see, knows, dreams, or thinks about things until they become reality. The man across the hall has been saying his wife has all his money,etc. It doesn't take much to influence another patient or give them ideas. We have already been through the "another man" stage. The only other men in my life or the "gay (fixed) cats" that live at this house! lol

The stages of Parkinson's Disease vary with every patient. I am glad the nurses at the nursing facility are familiar with those stages. I sometimes forget to recognize something as just one of the things with go with the disease. This isn't an easy life.

Happy Father's Day to all the fathers out there!

new developmrnents

It did shower last night.........but the biggest storm came by way of a phone call...........Jack said the doctor said he was able to go home???????????? There is a mistake somewhere! After a year and four months in a facility........he is able to be cared for a non professional? No, I am not able to lift this 300 pound man, cope with the sometimes violent reactions to anger, and professionally monitor his on going physical condition.