Monday, June 7, 2010
Monday, June 7, 2010DO YOU EVER WONDER...................?Do you ever wonder just what the future holds? Well, it is something we all do and yet we really don't want to know too much. If your family member is ill with a progressive disease like MS or Parkinson's Disease..........each day brings changes and more questions about the next stage of development. Jack is having some changes in his behavior and the changes come slowly and then wham they seem to explode! Right now he is very angry and upset with all the things that are happening. If he makes some small mistakes he seems to just react with strong emotion. Having a power chair sometimes isn't as good a thing as it has been for many years. The chair "all on its own will jump to a high speed"! Then Jack becomes angry and jams the chair into tables chairs or whatever is handy. If he backs into someone.....they ran into him.......(typical man? LOL) But dangerous if I were taking him out to a restaurant or entertainment. In the controlled environment of the care facility there isn't much he can damage expect other residents or me. I have had my feet run over and it's always isn't just a little thing. He has had a permanent cathater put in and it isn't working out as well as we had hoped. It is quite painful and something must be wrong. I hope the nurses and doctor can work out the problem for Jack's sake. His medication isn't always just on time and the results are muscles that won't work and a mouth that is so drawn aside that it is difficult to understand what Jack is saying........he also says he had difficulty breathing........some of this is the panic he feels when he is so out of control.I still go twice a day on most days..........it is getting so hot now I may cut that down because of the extreme danger to be out and about with the high humidity and heat index. Jack's daughter hasn't been here since last year and he would so like to see her. Her job and life style prevents her coming too often.For Christmas 2009 I made a wall hanging for Jack's room and it has all the things he has done in his life. Movies, plays, music, military, career, hobbies, volunteer activities and so many aspects of his life. It keeps him focused on how good life has been. Residents and visitors who drop in have something to start conversations and take away some good stories about Jack's life.This life alone is quite lonely to say the least for both Jack and I but we are making it day by day.............I looked forward to Spring now I am looking forward to Fall!
Thursday, March 11, 2010
March marks a milestone..........or a year stone?
Jack has been in the nursing facility for over a year now. I have to say that the professional care and social interaction is really great.
Care isn't as fast as Jack would like it and sometimes he gets really frustrated when an aide says " I'll be right back.. and doesn't come right back", but there are always distractions and sometimes people do forget to come right back. That is what that call button is for. But as far as the professional care.....it is good. Doctors advice is always available to the nurses and they come regularly each month and on call in an emergency. There isn't that need for appointments and long waits. If the nurse says this is an emergency......things get taken care of.
I was concerned when Jack caught a cold and had all the uncomfortable symptoms but I was assured he was taking medication to help his body fight on its own. And of course I caught the cold from him and wasn't so successful in making short work of the situation. Again it is reassuring to know someone is taking good care of him.
During the period when there was no power and water........I was comfortable knowing he was receiving care and generators were being connected. There were some night terrors until I could get a battery powered lamp to him but by that time the generators were rumbling along and THERE WAS LIGHT. The same situation with water made things a little dicy but water came on faster there than it did for the local area so again he was in good hands. Nursing facilities were at the head of the line for help in those situations.
The social situation in a nursing facility is always a plus. Recently there was a wedding and Jack was asked to be the "best man". The family picked someone else but the groom had chosen Jack. Currently Jack is trying to help another resident in adjusting to home away from home. Jack keeps telling the wife, that he himself had gone through those stages and he and I survived! smiles The resident cries a lot and Jack is a good listener. Everyone seems to look out for each other and check on each other even if they can't do much, they care. A friend of mine has her mother in the same facility. She is 107 and the friend is pleased with the daily dressing and grooming of her mother, in addition to the care.
The food is always a problem. Some love everything, others like Jack are critical and picky but that is fine. He knows some things he should not eat and sticks to his guns about dark meat, gravy, heavy sauces, and lots of carbs. Most residents in this area like those southern comfort foods, but Jack is a salad guy instead of a meat and potatoes man. I supply lots of cottage cheese, fresh fruit, and sometimes crackers. The wife of one of the residents brings Jack goodies and that is wonderful....she stays and chats and that is a boost to morale.
I am usually at the facility twice a day. I do not take him out anymore. I cannot do it physically and he isn't always able unless his Parkinson's meds have been given recently. Also, there are sometimes emotional and physical changes occuring quickly and beyond my abilities.
Jack needed a new power chair but Medicare will not provide one for someone in a nursing facility. The local store provides a lot of help with the chair and they found a "almost like new" one that is exactly like the one he had so we made a seat switch and same considerable $$$$. A rental was 13 dollars a day until the switch was made and it was different and more difficult to operate. I have noticed that Jack isn't quite as accurate with his power chair and a lot of bloody knuckles, bumps, and "runs into" are on the list these days.
I have been doing the April scary deadline tax (lol) and am shocked at the amount of medical deductions there are this year. We are private pay and that takes a toll on savings accumulated over the years. Hope Uncle Sam has a gentle heart this year when it comes to returns.
I hope I can keep the blog up to date now........life seems to have lots of interuptions that keeps me from writing......or wanting to.
COME QUICKLY SPRING!
Care isn't as fast as Jack would like it and sometimes he gets really frustrated when an aide says " I'll be right back.. and doesn't come right back", but there are always distractions and sometimes people do forget to come right back. That is what that call button is for. But as far as the professional care.....it is good. Doctors advice is always available to the nurses and they come regularly each month and on call in an emergency. There isn't that need for appointments and long waits. If the nurse says this is an emergency......things get taken care of.
I was concerned when Jack caught a cold and had all the uncomfortable symptoms but I was assured he was taking medication to help his body fight on its own. And of course I caught the cold from him and wasn't so successful in making short work of the situation. Again it is reassuring to know someone is taking good care of him.
During the period when there was no power and water........I was comfortable knowing he was receiving care and generators were being connected. There were some night terrors until I could get a battery powered lamp to him but by that time the generators were rumbling along and THERE WAS LIGHT. The same situation with water made things a little dicy but water came on faster there than it did for the local area so again he was in good hands. Nursing facilities were at the head of the line for help in those situations.
The social situation in a nursing facility is always a plus. Recently there was a wedding and Jack was asked to be the "best man". The family picked someone else but the groom had chosen Jack. Currently Jack is trying to help another resident in adjusting to home away from home. Jack keeps telling the wife, that he himself had gone through those stages and he and I survived! smiles The resident cries a lot and Jack is a good listener. Everyone seems to look out for each other and check on each other even if they can't do much, they care. A friend of mine has her mother in the same facility. She is 107 and the friend is pleased with the daily dressing and grooming of her mother, in addition to the care.
The food is always a problem. Some love everything, others like Jack are critical and picky but that is fine. He knows some things he should not eat and sticks to his guns about dark meat, gravy, heavy sauces, and lots of carbs. Most residents in this area like those southern comfort foods, but Jack is a salad guy instead of a meat and potatoes man. I supply lots of cottage cheese, fresh fruit, and sometimes crackers. The wife of one of the residents brings Jack goodies and that is wonderful....she stays and chats and that is a boost to morale.
I am usually at the facility twice a day. I do not take him out anymore. I cannot do it physically and he isn't always able unless his Parkinson's meds have been given recently. Also, there are sometimes emotional and physical changes occuring quickly and beyond my abilities.
Jack needed a new power chair but Medicare will not provide one for someone in a nursing facility. The local store provides a lot of help with the chair and they found a "almost like new" one that is exactly like the one he had so we made a seat switch and same considerable $$$$. A rental was 13 dollars a day until the switch was made and it was different and more difficult to operate. I have noticed that Jack isn't quite as accurate with his power chair and a lot of bloody knuckles, bumps, and "runs into" are on the list these days.
I have been doing the April scary deadline tax (lol) and am shocked at the amount of medical deductions there are this year. We are private pay and that takes a toll on savings accumulated over the years. Hope Uncle Sam has a gentle heart this year when it comes to returns.
I hope I can keep the blog up to date now........life seems to have lots of interuptions that keeps me from writing......or wanting to.
COME QUICKLY SPRING!
Tuesday, October 20, 2009
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.......
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.......
Monday, August 3, 2009
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.
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.
Monday, June 22, 2009
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?
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?
Saturday, June 20, 2009
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!
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!
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