The Hospice LVN called yesterday to report Dad was happy and loving.
His eye looked dry and scabby instead of oozing gunk...
His rash was subsiding...
His vitals were in normal limits...
I am thankful he has such a cheery attitude and feels well cared for. He is enjoying the extra visits Hospice provides, enjoying the women's company...
Dad has become quite the big flirt...
Thursday, August 30, 2012
Tuesday, August 28, 2012
Care Conference for Dad and a Wee Phone Visit...
Attended Dad's Care Conference this morning over the phone, with Mom in attendance. They confirmed our do not resuscitate orders in case Dad would need CPR, but he would get oxygen if he needed it.
We determined since Dad is on Hospice now, some medications are not paid by Hospice and some services. Dad has needed dental work, but Medicare/Medi-Cal prefers to pull the teeth than fill them. Having worked for dentists in the past, I know that is not a preventative practice. If teeth are pulled, the space has to be filled or the teeth shift and throw off the bite, not to mention making it more difficult for a person to chew food. That said, Dad would not allow any dental work to be done...he would not allow them to do x-rays!
Dad needs about 15 teeth filled now. He needed dental work before he went into the nursing home, but would not go because he was getting more and more fearful and paranoid of treatment, making excuses about x-rays, not liking the dentist and how overly priced the dental work was...
Dad has a hearing aid, but rarely uses it because he forgets he has it at the nursing station, and family usually manages without it when we visit... If Dad had it, he would lose it like he loses his glasses. He does have glasses and the nurses are really good about taking them off Dad and putting them away in his bedside drawer. The staff also remind or ask if he wants to wear them.
We will continue Dad having his eye exams as it is especially important to keep an ongoing examination of his right eye with the skin cancer on the lower eye lid.
We may discontinue his hearing tests but he will continue to see the Podiatrist, especially with the skin cancer on his left pinkie toe.
There was a question and brief discussion about Dad not being able to see the Psychiatrist since Dad is on Hospice, because the Psychiatrist would not be paid....It is important Dad continues to see the Psychiatrist to keep Dad on the Lexapro. Dad's primary physician can continue the Aracept, but not the Lexapro.
I determined if that was an issue, we would discontinue Hospice. Mom agreed. The Hospice nurse said she would have an answer for us by this afternoon....but before the meeting was over, the Hospice Director showed up at the Care Conference and confirmed the Psychiatrist would continue to get paid, he would make sure he was paid and explain how to bill....so that was resolved.
I am not thrilled with Hospice so far. I am not getting regular reports from the LVN as she promised. She promised again to call me every Wednesday, because I had to contact her through the Hospice Rep last Thursday to find out what happened last Wednesday.
Also the RN has been to see Dad twice and has not contacted me about her visits. She was in the Care Conference meeting, so I took the opportunity to ask if she would be contacting me and she said she would.
I have been playing phone tag with the Social Worker and still not spoken with her. I had to ask at the Care Conference if the nursing home would continue to update me on new orders for Dad or would Hospice let me know. They told me the nursing home should be calling me. I explained they had not let me know about new orders for more drops for Dad's eye and for antibiotic topical cream for Dad's left toe. I found out from the LVN visiting on Wednesdays.
The Director of Nursing apologized to me and assured me, they would notify me. I realize how busy they are and the level of care they provide the patients and attention to the visiting families, I could understand if they were side tracked occasionally.
Dad gained a pound and now weighs 149. He is eating 85 to 95% of his meals and doing excellent in attending daily activities. Dad attends 3-5 times per week and especially loves any music, singing and dancing.
I had concerns with Dad's new Hospice diagnosis of Failure to Thrive and wondered if Dad would be taken off some of the many medications he takes for his blood pressure, heart, thyroid, gout, etc...and happily, they plan to continue those medications. There were a few duplications with his meds such as Colace and Phena S which are stool softeners....and he is not constipated, so I had wondered why he had to be on two. They will discontinue the Colace and keep Dad on the other...
In addition, he is on aspirin and Clavix, which are both blood thinners. The nursing home had been treating Dad's blood pressure and heart condition aggressively by making sure his blood stayed free of clots, but often taking the double dose causes more hematomas and bruising....so we decided to discontinue the Clavix and see how Dad does.
Hospice questioned the Vitamin D Dad takes, but when they were told Dad does walk and move around and is not wheel chair bound or bed bound, they agreed Dad should stay on it.
All and all it was a good report...
Mom called me after the Conference so I could talk with Dad. Dad and Mom were in the dining room I think, waiting for Dad's lunch. It was very noisy and I could hardly hear him, so I know it had to be difficult for him as well...
Dad responds when I call him my pet name for him, Papa Doots, and when I tell him I love him...but when I ask how he is, he launches into lengthy, run-together-abstract thoughts which don't make any sense. I attempt to pick out a word or two and say something relating to that, which he responds to and in my mind, is my attempt to keep him thinking he is being understood and carrying on a conversation.
He commented on not being able to hear, how noisy it was...and he is waiting for his lunch. So I told him I loved him, blessed him and extended my husband Jerry's love to him. He was happy to hear about my husband as he thinks the world of him. He laughed when I told him Izzy our dog sends her love too.
I told him to have a nice visit with Mom and to enjoy his lunch....it was so good to just hear his voice.
We determined since Dad is on Hospice now, some medications are not paid by Hospice and some services. Dad has needed dental work, but Medicare/Medi-Cal prefers to pull the teeth than fill them. Having worked for dentists in the past, I know that is not a preventative practice. If teeth are pulled, the space has to be filled or the teeth shift and throw off the bite, not to mention making it more difficult for a person to chew food. That said, Dad would not allow any dental work to be done...he would not allow them to do x-rays!
Dad needs about 15 teeth filled now. He needed dental work before he went into the nursing home, but would not go because he was getting more and more fearful and paranoid of treatment, making excuses about x-rays, not liking the dentist and how overly priced the dental work was...
Dad has a hearing aid, but rarely uses it because he forgets he has it at the nursing station, and family usually manages without it when we visit... If Dad had it, he would lose it like he loses his glasses. He does have glasses and the nurses are really good about taking them off Dad and putting them away in his bedside drawer. The staff also remind or ask if he wants to wear them.
We will continue Dad having his eye exams as it is especially important to keep an ongoing examination of his right eye with the skin cancer on the lower eye lid.
We may discontinue his hearing tests but he will continue to see the Podiatrist, especially with the skin cancer on his left pinkie toe.
There was a question and brief discussion about Dad not being able to see the Psychiatrist since Dad is on Hospice, because the Psychiatrist would not be paid....It is important Dad continues to see the Psychiatrist to keep Dad on the Lexapro. Dad's primary physician can continue the Aracept, but not the Lexapro.
I determined if that was an issue, we would discontinue Hospice. Mom agreed. The Hospice nurse said she would have an answer for us by this afternoon....but before the meeting was over, the Hospice Director showed up at the Care Conference and confirmed the Psychiatrist would continue to get paid, he would make sure he was paid and explain how to bill....so that was resolved.
I am not thrilled with Hospice so far. I am not getting regular reports from the LVN as she promised. She promised again to call me every Wednesday, because I had to contact her through the Hospice Rep last Thursday to find out what happened last Wednesday.
Also the RN has been to see Dad twice and has not contacted me about her visits. She was in the Care Conference meeting, so I took the opportunity to ask if she would be contacting me and she said she would.
I have been playing phone tag with the Social Worker and still not spoken with her. I had to ask at the Care Conference if the nursing home would continue to update me on new orders for Dad or would Hospice let me know. They told me the nursing home should be calling me. I explained they had not let me know about new orders for more drops for Dad's eye and for antibiotic topical cream for Dad's left toe. I found out from the LVN visiting on Wednesdays.
The Director of Nursing apologized to me and assured me, they would notify me. I realize how busy they are and the level of care they provide the patients and attention to the visiting families, I could understand if they were side tracked occasionally.
Dad gained a pound and now weighs 149. He is eating 85 to 95% of his meals and doing excellent in attending daily activities. Dad attends 3-5 times per week and especially loves any music, singing and dancing.
I had concerns with Dad's new Hospice diagnosis of Failure to Thrive and wondered if Dad would be taken off some of the many medications he takes for his blood pressure, heart, thyroid, gout, etc...and happily, they plan to continue those medications. There were a few duplications with his meds such as Colace and Phena S which are stool softeners....and he is not constipated, so I had wondered why he had to be on two. They will discontinue the Colace and keep Dad on the other...
In addition, he is on aspirin and Clavix, which are both blood thinners. The nursing home had been treating Dad's blood pressure and heart condition aggressively by making sure his blood stayed free of clots, but often taking the double dose causes more hematomas and bruising....so we decided to discontinue the Clavix and see how Dad does.
Hospice questioned the Vitamin D Dad takes, but when they were told Dad does walk and move around and is not wheel chair bound or bed bound, they agreed Dad should stay on it.
All and all it was a good report...
Mom called me after the Conference so I could talk with Dad. Dad and Mom were in the dining room I think, waiting for Dad's lunch. It was very noisy and I could hardly hear him, so I know it had to be difficult for him as well...
Dad responds when I call him my pet name for him, Papa Doots, and when I tell him I love him...but when I ask how he is, he launches into lengthy, run-together-abstract thoughts which don't make any sense. I attempt to pick out a word or two and say something relating to that, which he responds to and in my mind, is my attempt to keep him thinking he is being understood and carrying on a conversation.
He commented on not being able to hear, how noisy it was...and he is waiting for his lunch. So I told him I loved him, blessed him and extended my husband Jerry's love to him. He was happy to hear about my husband as he thinks the world of him. He laughed when I told him Izzy our dog sends her love too.
I told him to have a nice visit with Mom and to enjoy his lunch....it was so good to just hear his voice.
Sunday, August 19, 2012
Only the Shadow Knows....
Mom and my sister Holly went to visit Dad yesterday. They found him snoozing my the nurses station in his wheel chair. They wheeled him out to the front patio of the nursing home and found some shade....
Dad kept his "bad eye" closed the entire visit...my sister suspected he would not allow the staff to hydrate it.
Dad was acting very odd and kept doing his evil laugh...it sounds like the laugh he used to do when he would imitate The Shadow from the old radio program days...one of his favorites...and he used to say, "Only the Shadow Knows"....and then let out with an evil laugh....
His favorite topics of conversation were sex and my sister's forehead.
He told them there was a whale spouting blood and they made him a steak from it for his breakfast...and blasted his evil laughter over them...
He had a nice neat hair cut and seemed happy...just very odd. If they stopped talking or asking Dad questions for any reason, Dad closed his other eye and dozed off...
They called me to talk to Dad to see if they could divert his weirdness....He did sound odd...."Hellll-llllooooooooo Donnnnnnnnn-nnnnnnnnnaaaaaa (evil laugh)"
I ignored it and greeted him happily with my usual, Papa Doots....
He did more evil laughter and told me he was looking at this beautiful women....more evil laughter....
I asked if Mom and Holl Doll were visiting him....
Oh yes, and she is so beautiful I want to kiss, kiss, kiss, kiss her....(very loud evil laughter)
There were a few more exchanges but Dad was really off his beam and obviously feeling extremely frisky and inappropriate...
Before I could say good bye, my sister took the phone away from him ....then there was silence but I could see I was still connected to Holly's cell phone so I waited...
Pretty soon Holly came on the line and said Dad had pushed the mute button. She told me I was being a good sport but she had to put a stop to it....
They wheeled him inside to the front lobby and Holly took a four minute video of Dad babbling...but the self piano was playing so it drowned out what Dad was saying.... She took the picture above of Dad and Mom.
Mom and Holly decided it was time for Dad to get ready for lunch, so they wheeled him into the lunchroom and got him situated at a table. Doctor-Doctor brought Mom and Holly some coffee and Dad's delicious looking lunch of BBQ chicken, beans, corn, peaches, whole wheat bread, milk, juice and coffee. Dad ate well.
He laughed and smiled and seemed very happy. They said their good byes and left him to be prepared for his afternoon nap...
Thursday, August 16, 2012
Hospice Updates and Grandson Quips...
I was so relieved to get a phone call from Hospice last Friday...the doctor has changed the diagnosis from Alzheimer's to Failure to Thrive.... If the doctor kept the Alzheimer's diagnosis, Dad would have had to go off his Aracept and Lexapro, which is the last thing we wanted...so now Dad can stay on his Alzheimer's medication...
I got a phone call from the hospice nurse yesterday afternoon. She told me Dad had vomited after breakfast, last night after dinner and yesterday after breakfast, which I knew...I had spoken with them yesterday...
She said Dad's vitals were normal range, but she had reported the vomiting to Dad's doctor. She told me she would see Dad every Wednesday and call me with a report. She also took a picture of Dad's left pinkie toe....I neglected to ask her to email the picture to me...I will call Hospice and ask, or ask her next Wednesday.
I think (and hope) Dad is eating too fast and quite possibly too much and that is what is making him vomit. It usually happens once after a meal.
I apologize if some of these posts may be too graphic or "too much information".... Our journey from here on out may not be pleasant...but I appreciate those of you who have hung in with me these past three years, being support for myself and my family, keeping us in prayer and checking in with me periodically to keep in touch.... Thank you from the bottom of my heart...
********************
GRANDSON QUIPS:
Yesterday, the 7 year old and the 10 year started back to school....My daughter woke up the 10 year old and they were sitting on the bed talking when the 7 year old opened one eye ball, looked at both of them, then leaped from his bed and ran full speed down the hall....my daughter thought he was sick and running to the bathroom...but he was standing at the kitchen table pouring cereal into his bowl. He was excited for his first day as a 3rd grader.
The 10 year old starts 5th grade with his first male teacher. He probably would have enjoyed a couple more days of summer, but he was excited too. After school, my daughter asked the 10 year old what was his favorite part of his first day...he smiled at her, "EVERYTHING!"
Typically, the 7 year old reported he was leaning back in his chair and fell backwards so he grabbed for the desk and pulled it over on him. "Good thing there were no books in my desk or they would have been on my head!" Knowing her son's promise to pay more attention so he won't get warnings or time outs, she asked what the teacher said...."She said, 'Are you OK?'" He is really a character...
I got a phone call from the hospice nurse yesterday afternoon. She told me Dad had vomited after breakfast, last night after dinner and yesterday after breakfast, which I knew...I had spoken with them yesterday...
She said Dad's vitals were normal range, but she had reported the vomiting to Dad's doctor. She told me she would see Dad every Wednesday and call me with a report. She also took a picture of Dad's left pinkie toe....I neglected to ask her to email the picture to me...I will call Hospice and ask, or ask her next Wednesday.
I think (and hope) Dad is eating too fast and quite possibly too much and that is what is making him vomit. It usually happens once after a meal.
I apologize if some of these posts may be too graphic or "too much information".... Our journey from here on out may not be pleasant...but I appreciate those of you who have hung in with me these past three years, being support for myself and my family, keeping us in prayer and checking in with me periodically to keep in touch.... Thank you from the bottom of my heart...
********************
GRANDSON QUIPS:
Yesterday, the 7 year old and the 10 year started back to school....My daughter woke up the 10 year old and they were sitting on the bed talking when the 7 year old opened one eye ball, looked at both of them, then leaped from his bed and ran full speed down the hall....my daughter thought he was sick and running to the bathroom...but he was standing at the kitchen table pouring cereal into his bowl. He was excited for his first day as a 3rd grader.
The 10 year old starts 5th grade with his first male teacher. He probably would have enjoyed a couple more days of summer, but he was excited too. After school, my daughter asked the 10 year old what was his favorite part of his first day...he smiled at her, "EVERYTHING!"
Typically, the 7 year old reported he was leaning back in his chair and fell backwards so he grabbed for the desk and pulled it over on him. "Good thing there were no books in my desk or they would have been on my head!" Knowing her son's promise to pay more attention so he won't get warnings or time outs, she asked what the teacher said...."She said, 'Are you OK?'" He is really a character...
Wednesday, August 15, 2012
Come Out With Your Hands UP!...(and Letting it Go!)
My brother E____ visited Pops (E's nickname for Dad) yesterday. He found him "counting sheep" in his bed in his room.
Pickles brought in Dad's lunch to him in bed. When Dad woke up and saw E____, Dad laughed and said E____ was his best friend and he loved him...
Apparently Dad had thrown up earlier and he wanted a fruit plate to eat...my brother helped him eat it with a spoon as Dad was sitting up in bed. Dad laughed as he saw blood on his napkin, from the sore on his upper lip, after wiping his mouth...
After he finished his food he told my brother how happy he was, several times. He was very jovial and smiling ear to ear. Dad told him he likes it when he gets sick because it gets rid of what is making him feel so bad...
E____ took Dad's picture....happy and smiling as usual....
Pickles brought in Dad's lunch to him in bed. When Dad woke up and saw E____, Dad laughed and said E____ was his best friend and he loved him...
Apparently Dad had thrown up earlier and he wanted a fruit plate to eat...my brother helped him eat it with a spoon as Dad was sitting up in bed. Dad laughed as he saw blood on his napkin, from the sore on his upper lip, after wiping his mouth...
After he finished his food he told my brother how happy he was, several times. He was very jovial and smiling ear to ear. Dad told him he likes it when he gets sick because it gets rid of what is making him feel so bad...
E____ took Dad's picture....happy and smiling as usual....
Dad chatted away for about twenty more minutes, laughing and telling my brother how happy he is...my brother laughed with him, but couldn't really get a word in edgewise as Dad was talking non stop...
E____ had to return to work as they hugged and kissed good bye... Dad was ready for another snooze. E____ thought the visit was better than he expected....
The nursing home is in the middle of a residential area...usually very pleasant and quiet. As my brother walked out the front door, he heard a helicopter hovering above announcing,
"COME OUT WITH YOUR HANDS UP!"
My brother noticed a police officer about 100 yards away....
E____ was quite happy and relieved when he realized the police did not mean him....he began to see more police and found out later they were looking for some thug...
I called the nursing home yesterday trying to talk with Dad...having the usual problems...and after reading my brother's email, I called them again this morning. I asked the male nurse why I was not being informed about Dad's vomiting. He told me they do not call if he vomits one time after a meal, because he may have eaten too much or too fast... If he throws up several times or it is a dark color, then they call....(Sorry if this is too much information....)
I asked if I could speak with Dad and he told me he would call me when Dad was finished with lunch....(that's what they told me yesterday too....and they didn't call.) I know they are busy, so I called again at 1pm and was able to chat with Dad for about fifteen minutes...
"Hel-loooo Donna"
Hi Papa Doots!
(Dad laughs....)
I love you Dad....
"I love you too...."
How are you?
"I am just fine. I threw up but now I feel so much better...."
You threw up after lunch?
"Yes I did...I knew I was going to get sick and so I vomited and I feel much better...."
Did you eat too much?
"I had a good lunch. They have good food..."
Try to eat slower Dad...
"Oh yeah, I eat slow, but if you get sick, you gotta' let it go!"
(We both laughed....) "They clean it up good too!" ( Laughs again...)
(Dad continued to discuss his getting sick...so I changed the subject....)
Did you visit with E_____ yesterday?
"YES I DID! HE LOOKS SO GOOD! He's such a great guy...."
(Dad talked non stop, sounding very happy, but it was very difficult to make any sense of what he was saying...but it was good visit with my brother...)
Have you seen K_____ ? (my second to the oldest brother)
"Yes, he came too but he is not here now...he is working outside and taking care of Brutus..." (my brother K____owns a trucking company and Brutus was Dad's favorite dog who died over forty years ago...)
Jerry and I send lots of love and hugs to you Dad...
"Oh good....and I'd like to come visit you again...we have lots of fun..."
Yes we do! I think we better wait until it is cooler because it is 112 here now....
"Yeah, that's a bit hot....I better let you go...I know you are busy..."
I'm not too busy for you Dad...we can talk as long as you want....
"I think I want to go back to sleep if I can..."
OK...have some sweet dreams Papa Doots...I love you...God Bless you...
"God Bless you too...."
Talk with you soon...
"OK...bye bye..."
I feel relieved....I hate it when I can't hear his voice....no matter how short the phone call....
Tuesday, August 7, 2012
Look Who is Almost 2 Years Old....
I have not posted much about my youngest grand son Jacob in awhile...Yesterday afternoon my daughter called to tell me she finally got an iPhone so she would not have to wait until her Fiance got home to face time with me...so we face timed and I got to see Jacob...even if he kept asking for Boompa (Grandpa...my husband) and Izzy (our dog) and me, Teataw....I was spinning my mac book back and forth so he could see all of us...and he thought it was great fun!
He also likes to throw kisses back in forth....with sound effects....we both laugh when we do this...
Jacob also loves to play hide and seek with me and to stick his cute little foot up to the screen so I can smell it...then pretend to make a sour face and tell him he has stinky feet.... That makes him belly laugh!
Here is a recent picture my daughter Jodee posted yesterday of Jacob on Facebook...entitled, "my little man"...
Jacob will be 23 months the end of this month and turn 2 years old next month. Of course we will travel to California for his birthday....
He is going to Daycare now....and he loves playing with the other little kids...and doing all the activities, but he has had a rough month and a half catching various colds, coughs, etc being exposed to other kids...
I just love his spiked hair...looks so cute.... He reminds me so much of my older daughter, Holly's sons...they all look like brothers instead of cousins.
Thank you Lord for all our many blessings....
He also likes to throw kisses back in forth....with sound effects....we both laugh when we do this...
Jacob also loves to play hide and seek with me and to stick his cute little foot up to the screen so I can smell it...then pretend to make a sour face and tell him he has stinky feet.... That makes him belly laugh!
Here is a recent picture my daughter Jodee posted yesterday of Jacob on Facebook...entitled, "my little man"...
He is going to Daycare now....and he loves playing with the other little kids...and doing all the activities, but he has had a rough month and a half catching various colds, coughs, etc being exposed to other kids...
I just love his spiked hair...looks so cute.... He reminds me so much of my older daughter, Holly's sons...they all look like brothers instead of cousins.
Thank you Lord for all our many blessings....
Monday, August 6, 2012
Looking Back and Looking Forward...
The vote was unanimous with my family to welcome Hospice as an extension of our family in helping in Dad's care and assuring the dignity he deserves...
I received an email from Dad's primary care physician today, telling me he did not see amputation of Dad's left pinkie toe at this particular time. The cryotherapy did not stop the infection, but the infection is not progressing and getting any worse. I guess I anticipated the doctor to tell me Dad would need the amputation, which has given me some pause...
I found myself second guessing myself...asking myself, my brother and Mother whether I should make a trip to California and attempt to explain all this to Dad... I know Hospice will be a positive experience for Dad in that he will gain more visitors, have more advocates for his well being and care, as well as possibly stimulating him by new faces and new conversations....
I am mainly concerned Dad will react negatively if he should realize they are from Hospice. I don't want him to feel we betrayed him because of the distorted feelings he had about hospice. Dad used to be a volunteer Chaplain and visited patients in nursing homes and hospice. Unfortunately, it was the last years, prior to be admitted to the nursing home, when he was becoming more demented. He was still compassionate, but he took on the symptoms, the regrets and the rights of those patients to heart. Even though he had some hospice training, his mind was confused and for him, Hospice means dying and he became very suspicious toward doctors.
Early on, three years ago when Dad was first admitted to the nursing home, he had recovered from his pneumonia, was on the last leg of the antibiotics, his leg ulcers were being treated and he was going to be transferred to the nursing home where he used to work as a volunteer. Several of the hospital staff knew Dad, which may have been both comforting and emotionally challenging for Dad.
I told the nursing home I wanted to be with Dad in the ambulance when they transferred him across the parking lot to the nursing home. I waited all day at the hospital with my brothers, waiting for the hospital to transport Dad. Finally, at 8pm, the hospital told me they would NOT be transporting Dad and they would move him in the morning.
Dad had called me at his home, where I was staying. He asked me to come get him. I told him he was still under the doctor's care and he had to stay there. It was so difficult for me because he sounded scared. I told him I would see him in the morning...
At midnight that night, the hospital called to tell me they were going to transport him. I told them I could not drive there as I have vision problems at night. I argued with them as they had told me he would NOT be moved until the next morning. They assured me Dad would be escorted and doing fine with it and there were no problems...
The next morning I went to the nursing home and discovered Dad was still at the hospital. When I arrived, Dad seemed "out of it" like he was drugged. I inquired around and after piecing things together due to new staff on different shifts, I found out Dad had gone into "combat mode" and fought the transport, even hitting a nurse. They sedated him with Halidol and decided to keep him in the hospital.
I raised HOLY HELL with the Administration office and the Director of Nursing. I TOLD them he would not have gotten aggressive if I had been there. After feeding him breakfast, I rode with Dad and got him settled in his room at the nursing home. Dad still seemed sedated and seemed sleepy, so I told him I would stay until he fell asleep and Holl Doll (my sister) would be coming to visit him.
It was my birthday and I was having dinner with my husband and daughter when my sister called to tell me Dad was still sleeping and she had been unable to wait him up. Not thinking anything about it, I told her we planned on coming the next morning.
When we arrived, Dad was still sleeping. I asked the nurses and doctors and was told Dad had not waken for lunch, dinner or breakfast. His lunch tray sat untouched next to his bed. The doctor had no explanation as to why he was not waking and described Dad to be in a sleep like coma. I called the rest of the family and everyone came down to hold vigil at his bed side. We decided against any intervention by MRI or tests because the doctor did not really have any explanation ...(except Dad had a bad reaction to the Halidol!!!) or guarantee Dad would wake up. We decided to contact Hospice, but asked they not announce they were from hospice, should Dad awake.
As we were all milling about around Dad's bed, my daughter Jodee was sitting beside his bed, quietly and gently describing pictures my two grandsons had drawn for him. I was watching her with tears in my eyes at how sweet she was with him, when I saw Dad's eyes flutter. In an instant later, Dad opened his eyes.
When he saw all of us standing around his bed, his eyes grew large and his mouth dropped open in a huge smile of surprise and delight....we all gathered around him hugging, kissing, laughing, cheering and being so happily relieved. My brother E____ referred to Dad's coma as his "Rip Van Winkle".
About an hour later, some of us had left and some were in the hallway making phone calls, I was in the restroom, and the hospice social worker arrived in Dad's room, announcing she was with HOSPICE and handing him her card. Dad dismissed her promptly, yelling at her he was NOT DYING!
This memory is still vivid in my mind. I was so upset with the social worker and she apologised profusely about forgetting she was not suppose to tell him she was with hospice...but we never broached the subject again, until now...
It is the common perception to equate Hospice and dying, but for most of our family, it now means the best quality of life we can give Dad in his remaining time alive.
I still feel protective of Dad. I reminded the hospice expert several times about not mentioning the word hospice to Dad....along with other words such as dementia, Alzheimer's, biopsy or surgery. Dad reacts in fear with any of those words. He assured me they would not mention being from hospice, unless asked directly, then they would not lie to him. He told me they would tell Dad they were friends of our family and give him a chance to feel more comfortable with the team, should Dad ask them.
When I told the hospice expert I would email him all the names of the members of our family and give him some background on Dad, his personality, interests and an over view of some of his medical issues, he told me how much it would help the hospice team....
My main concern is to be honest with Dad and I feel maybe I should go and talk with Dad and explain what is happening...but I think I waited too long. I should have discussed this with him when he could grasp what I was saying. Maybe I am feeling guilty that I failed Dad in a way for not preparing him...but would have he remembered anyway?
The hospice expert and Mom both feel we should go forward and my second thoughts are just protective symptoms with Dad...
Each day is a new day and we all do our best to find any remnant of anything positive. We know we are coming from a place of love and only want the best for Dad...so it is that very thought I must continue to embrace...
I received an email from Dad's primary care physician today, telling me he did not see amputation of Dad's left pinkie toe at this particular time. The cryotherapy did not stop the infection, but the infection is not progressing and getting any worse. I guess I anticipated the doctor to tell me Dad would need the amputation, which has given me some pause...
I found myself second guessing myself...asking myself, my brother and Mother whether I should make a trip to California and attempt to explain all this to Dad... I know Hospice will be a positive experience for Dad in that he will gain more visitors, have more advocates for his well being and care, as well as possibly stimulating him by new faces and new conversations....
I am mainly concerned Dad will react negatively if he should realize they are from Hospice. I don't want him to feel we betrayed him because of the distorted feelings he had about hospice. Dad used to be a volunteer Chaplain and visited patients in nursing homes and hospice. Unfortunately, it was the last years, prior to be admitted to the nursing home, when he was becoming more demented. He was still compassionate, but he took on the symptoms, the regrets and the rights of those patients to heart. Even though he had some hospice training, his mind was confused and for him, Hospice means dying and he became very suspicious toward doctors.
Early on, three years ago when Dad was first admitted to the nursing home, he had recovered from his pneumonia, was on the last leg of the antibiotics, his leg ulcers were being treated and he was going to be transferred to the nursing home where he used to work as a volunteer. Several of the hospital staff knew Dad, which may have been both comforting and emotionally challenging for Dad.
I told the nursing home I wanted to be with Dad in the ambulance when they transferred him across the parking lot to the nursing home. I waited all day at the hospital with my brothers, waiting for the hospital to transport Dad. Finally, at 8pm, the hospital told me they would NOT be transporting Dad and they would move him in the morning.
Dad had called me at his home, where I was staying. He asked me to come get him. I told him he was still under the doctor's care and he had to stay there. It was so difficult for me because he sounded scared. I told him I would see him in the morning...
At midnight that night, the hospital called to tell me they were going to transport him. I told them I could not drive there as I have vision problems at night. I argued with them as they had told me he would NOT be moved until the next morning. They assured me Dad would be escorted and doing fine with it and there were no problems...
The next morning I went to the nursing home and discovered Dad was still at the hospital. When I arrived, Dad seemed "out of it" like he was drugged. I inquired around and after piecing things together due to new staff on different shifts, I found out Dad had gone into "combat mode" and fought the transport, even hitting a nurse. They sedated him with Halidol and decided to keep him in the hospital.
I raised HOLY HELL with the Administration office and the Director of Nursing. I TOLD them he would not have gotten aggressive if I had been there. After feeding him breakfast, I rode with Dad and got him settled in his room at the nursing home. Dad still seemed sedated and seemed sleepy, so I told him I would stay until he fell asleep and Holl Doll (my sister) would be coming to visit him.
It was my birthday and I was having dinner with my husband and daughter when my sister called to tell me Dad was still sleeping and she had been unable to wait him up. Not thinking anything about it, I told her we planned on coming the next morning.
When we arrived, Dad was still sleeping. I asked the nurses and doctors and was told Dad had not waken for lunch, dinner or breakfast. His lunch tray sat untouched next to his bed. The doctor had no explanation as to why he was not waking and described Dad to be in a sleep like coma. I called the rest of the family and everyone came down to hold vigil at his bed side. We decided against any intervention by MRI or tests because the doctor did not really have any explanation ...(except Dad had a bad reaction to the Halidol!!!) or guarantee Dad would wake up. We decided to contact Hospice, but asked they not announce they were from hospice, should Dad awake.
As we were all milling about around Dad's bed, my daughter Jodee was sitting beside his bed, quietly and gently describing pictures my two grandsons had drawn for him. I was watching her with tears in my eyes at how sweet she was with him, when I saw Dad's eyes flutter. In an instant later, Dad opened his eyes.
When he saw all of us standing around his bed, his eyes grew large and his mouth dropped open in a huge smile of surprise and delight....we all gathered around him hugging, kissing, laughing, cheering and being so happily relieved. My brother E____ referred to Dad's coma as his "Rip Van Winkle".
About an hour later, some of us had left and some were in the hallway making phone calls, I was in the restroom, and the hospice social worker arrived in Dad's room, announcing she was with HOSPICE and handing him her card. Dad dismissed her promptly, yelling at her he was NOT DYING!
This memory is still vivid in my mind. I was so upset with the social worker and she apologised profusely about forgetting she was not suppose to tell him she was with hospice...but we never broached the subject again, until now...
It is the common perception to equate Hospice and dying, but for most of our family, it now means the best quality of life we can give Dad in his remaining time alive.
I still feel protective of Dad. I reminded the hospice expert several times about not mentioning the word hospice to Dad....along with other words such as dementia, Alzheimer's, biopsy or surgery. Dad reacts in fear with any of those words. He assured me they would not mention being from hospice, unless asked directly, then they would not lie to him. He told me they would tell Dad they were friends of our family and give him a chance to feel more comfortable with the team, should Dad ask them.
When I told the hospice expert I would email him all the names of the members of our family and give him some background on Dad, his personality, interests and an over view of some of his medical issues, he told me how much it would help the hospice team....
My main concern is to be honest with Dad and I feel maybe I should go and talk with Dad and explain what is happening...but I think I waited too long. I should have discussed this with him when he could grasp what I was saying. Maybe I am feeling guilty that I failed Dad in a way for not preparing him...but would have he remembered anyway?
The hospice expert and Mom both feel we should go forward and my second thoughts are just protective symptoms with Dad...
Each day is a new day and we all do our best to find any remnant of anything positive. We know we are coming from a place of love and only want the best for Dad...so it is that very thought I must continue to embrace...
Thursday, August 2, 2012
Considering Hospice...
I just finished sending an email to my family about my conversation with the hospice expert Dad's physician referred me to. I can only imagine how he would be in person, because just over the phone he made me feel all warm and fuzzy. What a wonderful man! This is his calling. He told me God put him on this earth to be a servant. He took care of his Grandfather who had Alzheimer's.
He spent a long time listening to me talk about Dad, to give him a sense of who Dad is...he asked about my Mom too.
He told me although many people are admitted to hospice because there is a strong possibility the patient may die within a six month period, many last as long as 18 months to 2 years, or longer and several even come off hospice entirely because the patient is doing so well. This has been his experience.
Hospice is all about dignity, support and comfort for the patient. The hospice team would work along side the nursing home staff or come to a person's home, so Dad benefits from having more attention, care and additional advocates.
I can speak from personal experience having used hospice for my mother in law seven years ago when she died from Alzheimer's. At that time, both my husband and myself were under the misconception hospice meant impending death within 6 months.
I cannot imagine going through a serious illness with a family member and NOT having hospice because they feel like an extension of our family. Our only regret with my mother in law was, not calling hospice sooner.
He told me it was an honor to work with Dad's physician and his wife and told me how much he cares and fights for his patients. The hospice expert told me a Chaplain would visit Dad once a week or as often as Dad wanted him; a Social worker will come visit Dad within 72 hours of Dad being admitted to the hospice program; a volunteer will come once a week; a RN will come every other week; a CNA will come 2-3 times a week; a LVN will come once a week, in addition to all the care the nursing home and staff already provide for Dad.
He told me we could discuss Dad's medications and determine which ones to leave him on. He said Medicare would pay for some and Hospice would cover some. It all depends on what we want for Dad and most importantly, keeping him pain free and comfortable without any undo stress. I was impressed with the notes he took and repeated back to me.
So my family and I will discuss it and hopefully, they will join my mother and I and agree to call Hospice for Dad.
Our Marine reported back for combat training, after ten days liberty following his Boot Camp graduation. We expect him to fly to Virginia upon completion of his month long combat training during August.
I am still waiting for clarification from Dad's physician. I need to hear him say Dad needs amputation due to the antibiotics, Cryotherapy not working, mainly to Dad's nonexistent pulse in his lower legs....specifically his left leg. Waiting for the proverbial other shoe to drop, I have been on pins and needles and feel constantly on the verge of tears...
Today I go into the surgeon's office to have him attempt to aspirate the hitch hiking lump on my right elbow to determine if it is a benign ganglion cyst or sebaceous fatty cyst. I hope I can get some answers so I can put it behind me.
Thank you everyone so much for your never ending support, concern and prayers. You are the BEST!
He spent a long time listening to me talk about Dad, to give him a sense of who Dad is...he asked about my Mom too.
He told me although many people are admitted to hospice because there is a strong possibility the patient may die within a six month period, many last as long as 18 months to 2 years, or longer and several even come off hospice entirely because the patient is doing so well. This has been his experience.
Hospice is all about dignity, support and comfort for the patient. The hospice team would work along side the nursing home staff or come to a person's home, so Dad benefits from having more attention, care and additional advocates.
I can speak from personal experience having used hospice for my mother in law seven years ago when she died from Alzheimer's. At that time, both my husband and myself were under the misconception hospice meant impending death within 6 months.
I cannot imagine going through a serious illness with a family member and NOT having hospice because they feel like an extension of our family. Our only regret with my mother in law was, not calling hospice sooner.
He told me it was an honor to work with Dad's physician and his wife and told me how much he cares and fights for his patients. The hospice expert told me a Chaplain would visit Dad once a week or as often as Dad wanted him; a Social worker will come visit Dad within 72 hours of Dad being admitted to the hospice program; a volunteer will come once a week; a RN will come every other week; a CNA will come 2-3 times a week; a LVN will come once a week, in addition to all the care the nursing home and staff already provide for Dad.
He told me we could discuss Dad's medications and determine which ones to leave him on. He said Medicare would pay for some and Hospice would cover some. It all depends on what we want for Dad and most importantly, keeping him pain free and comfortable without any undo stress. I was impressed with the notes he took and repeated back to me.
So my family and I will discuss it and hopefully, they will join my mother and I and agree to call Hospice for Dad.
Our Marine reported back for combat training, after ten days liberty following his Boot Camp graduation. We expect him to fly to Virginia upon completion of his month long combat training during August.
I am still waiting for clarification from Dad's physician. I need to hear him say Dad needs amputation due to the antibiotics, Cryotherapy not working, mainly to Dad's nonexistent pulse in his lower legs....specifically his left leg. Waiting for the proverbial other shoe to drop, I have been on pins and needles and feel constantly on the verge of tears...
Today I go into the surgeon's office to have him attempt to aspirate the hitch hiking lump on my right elbow to determine if it is a benign ganglion cyst or sebaceous fatty cyst. I hope I can get some answers so I can put it behind me.
Thank you everyone so much for your never ending support, concern and prayers. You are the BEST!
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