April 25, 2018
We are now with a new hospice group, Hospice of Missoula. They seem very attentive and so sweet to Daniel. They have interviewed Daniel so much to find out his interests and what gives him pleasure. Their Chaplin is a Buddhist, their harpist is from the Drum Brothers so that is very interesting and made Daniel smile. Daniel loves his current massage therapist, and they are open to hiring her so Daniel can continue with her but they also have a massage therapist who does Reiki and Reflexology, and Daniel is interested in that also. They seem so loving and so caring. Wow! Isn't that what hospice is suppose to be?
The "welcome team" even noticed my hands, the other hospice group never noticed anything about me. My hands are so broken out, we tend to have this in my family. At least they have stopped bleeding but they hurt so badly and I have tried everything on them. Stress manifests in so many ways. I used to lose weight, wish that still happened but no, now I retain weight like nobody's business. And my hands breaks out with red rashes that itch like crazy. Then they crack and bleed, then skin flakes and is so disgusting. I'm embarrassed to shake hands with anyone. I know my skin is "poking" them.
I'm really not sure where Daniel "is" these days. We have been spending so much time with the hospice issue. One of our nurses is out with ACL surgery and one of our former nurses is back, YAY! We have been going through many transitions and not much time for personal talk. We will have some time today, I hope.
It's nice to have some diversions, however. I know Daniel gets tired so easily. He hasn't been wanting many visitors. By that I mean, none, lately. He just gets too exhausted from everything else going on. Hopefully, transitions will settle down now and he will have some more strength again.
His stomach is acting up. I'm really not sure if it has ever settled down. Still no key lime pie. Not a good sign. But he is still here so I'll take what I can get.
I'm going to see my precious Ida today, she is 8 months old, going on 80 years old, "grandchild. She is the daughter of one of Goddess Daughters and she makes me smile like no other. She is this little old soul trapped in an 8 month body laughing at all of us. I can be in the depth of despair and just watching her makes my heart sing. There is a future out there. There is hope and love.
I love both of my God-daughters, they both offer me hope for the future. It's a slice of heaven to have them both back in my life. They are done with college and done with their twenties. They have both explored the world and are so wise beyond their years, and I adore them. I love the way they are so tender with Daniel, and with me. Alyssa can lecture me on the law and what I need to be doing to protect Daniel, she even scares Kevin, LOL.
I know so many of you are doing your own care giving, so many surgeries going on right now. I hope James and Tom are doing well. My girlfriend group know as the Ski Team have our hands full taking care of others. We are women who need to have a reunion soon. Stay strong.
I love you all.
Wednesday, April 25, 2018
Thursday, April 19, 2018
April 19, 2018
We will be serviced by Hospice of Missoula starting April 24 at 12:01 AM, Hallelujah! For people in Missoula, their harpist is a member of the Drum Brothers, oh yeah. Their spiritual guide, that's what they called him, is a Buddhist, double yeah. The people who came to Daniel's were so loving and caring. Just what we wanted.
The original hospice group called yesterday morning and told me I had been told all the wrong information, that they would pay for Daniel's surgery. It is for comfort, etc. I am so over being lied to, medications not coming, the nurse not arriving when they said they would, etc. etc.
I sure am hoping the new agency helps us more and gives Daniel a new and brighter outlook on death and dying. He is still having some good days and I want to celebrate those days and not sedate him more, as has been suggested many times by the other hospice.
Things are certainly looking up even though it evolves many changes once again, I think it will be much smother process than what we have experience.
On another subject, my 91 year old mother just had a very successful surgery for a full knee replacement. A huge shout out to my brother, John and his loving wife, Jackie for being right there by her side. I simply can't go back right now but hopefully with a good hospice in place I will be able to help out in the future and give them a break. They will need one. Actually, I wish they could come here. Some day......
Thank you for reading.
I love you all.
We will be serviced by Hospice of Missoula starting April 24 at 12:01 AM, Hallelujah! For people in Missoula, their harpist is a member of the Drum Brothers, oh yeah. Their spiritual guide, that's what they called him, is a Buddhist, double yeah. The people who came to Daniel's were so loving and caring. Just what we wanted.
The original hospice group called yesterday morning and told me I had been told all the wrong information, that they would pay for Daniel's surgery. It is for comfort, etc. I am so over being lied to, medications not coming, the nurse not arriving when they said they would, etc. etc.
I sure am hoping the new agency helps us more and gives Daniel a new and brighter outlook on death and dying. He is still having some good days and I want to celebrate those days and not sedate him more, as has been suggested many times by the other hospice.
Things are certainly looking up even though it evolves many changes once again, I think it will be much smother process than what we have experience.
On another subject, my 91 year old mother just had a very successful surgery for a full knee replacement. A huge shout out to my brother, John and his loving wife, Jackie for being right there by her side. I simply can't go back right now but hopefully with a good hospice in place I will be able to help out in the future and give them a break. They will need one. Actually, I wish they could come here. Some day......
Thank you for reading.
I love you all.
Tuesday, April 17, 2018
April 17, 2018
Wow oh Wow! We had a meeting with Partnership in Hospice yesterday and it did not go well at all. I need to provide you with some background first.
Daniel's body has a reaction to the plastic in his body. His body wants to reject all of it which makes sense. but creates a lot of havoc for him and his nurses. He has a feeding tube (PEG tube) and he has a tracheotomy. His body likes to build up granulation around all of the plastic parts and make the stomas (an artificial opening made into a hollow organ, especially one on the surface of the body leading to the gut or trachea.) very sore and sensitive. The nurses clean these area twice a day to avoid any infection. The PEG site is much easier to clean and get rid of the granulation with silver nitrate. However the trach site takes a bit of surgery. They sedate Daniel, and the doctor cuts out the granulation in his trachea. They also replace the trach itself, too complicated to describe why but believe me it needs to be replaced. All of this is considered "comfort care" and not a medical necessity.
Hospice does not allow any invasive surgery or anything that would "save a person's life". Having the above surgery does not save Daniel's life. So we had a meeting yesterday about the procedure. I had canceled this procedure twice because Daniel was not stable enough to have it done. His trach site is really hurting right now and he is requesting to have this surgery. We usually do this procedure twice a year for the past several years. The surgery is scheduled for May 17th so I gave a long notice to hospice so they could help me get him to the hospital, etc.
Instead, they told us yesterday that Daniel would be released from hospice on May 16th, then have the surgery the next day, and may not be readmitted to hospice the 18th. They have decided this is a life saving measure and will not be tolerated.
Of course we were in shock, Daniel has so many life threatening issues. Five years ago we were told he was hospice eligible without the ileus issues.
Hospice takes over all the medications, the ordering of supplies, they change your pharmacy, it's incredible how they change your life. So, this means, I am expected to change everything back and get Daniel covered by medicaid, medicare for the surgery. They have certainly made my life hell.
I have heard only good things about hospice but this organization has caused a lot of upheaval in our lives, breaking confidences, telling lies to a nurse, really causing some major concerns.
I guess my day today will be filled with calling the other hospice groups in our town and asking them if they will take Daniel as a client. I think he would be a money maker for anyone who is willing to take him on but what do I know?
If any of you have any experience with hospice in Missoula will you please let me know you opinions and suggestions. I am truly at a lost as to what to do now.
Daniel's father, John, and his wife, Janice, happened to stop by in the middle of the meeting and were just as upset as I was. Daniel is totally freaked out and wondering what all of this means to the care of his final stages of life. It was a mess. I'm crying, John's yelling, Daniel is being reasonable and finally after everyone left asked me to start looking for different hospice groups.
Thank goodness Daniel has the sanity of the group. I feel so unsupported, I even asked where is their compassion? They told me the people in the room had compassion but they were apart of the team who made the decision. I told them to hug their healthy kids. Angry? Yes, very. Heartbroken? Yes, very. Lonely? Very. Confused? Yes.
I'm so thankful for the nurses Daniel has, they will group together and see us get through this time. Mother bear, yes I am, I have to be.
I love you all.
Wow oh Wow! We had a meeting with Partnership in Hospice yesterday and it did not go well at all. I need to provide you with some background first.
Daniel's body has a reaction to the plastic in his body. His body wants to reject all of it which makes sense. but creates a lot of havoc for him and his nurses. He has a feeding tube (PEG tube) and he has a tracheotomy. His body likes to build up granulation around all of the plastic parts and make the stomas (an artificial opening made into a hollow organ, especially one on the surface of the body leading to the gut or trachea.) very sore and sensitive. The nurses clean these area twice a day to avoid any infection. The PEG site is much easier to clean and get rid of the granulation with silver nitrate. However the trach site takes a bit of surgery. They sedate Daniel, and the doctor cuts out the granulation in his trachea. They also replace the trach itself, too complicated to describe why but believe me it needs to be replaced. All of this is considered "comfort care" and not a medical necessity.
Hospice does not allow any invasive surgery or anything that would "save a person's life". Having the above surgery does not save Daniel's life. So we had a meeting yesterday about the procedure. I had canceled this procedure twice because Daniel was not stable enough to have it done. His trach site is really hurting right now and he is requesting to have this surgery. We usually do this procedure twice a year for the past several years. The surgery is scheduled for May 17th so I gave a long notice to hospice so they could help me get him to the hospital, etc.
Instead, they told us yesterday that Daniel would be released from hospice on May 16th, then have the surgery the next day, and may not be readmitted to hospice the 18th. They have decided this is a life saving measure and will not be tolerated.
Of course we were in shock, Daniel has so many life threatening issues. Five years ago we were told he was hospice eligible without the ileus issues.
Hospice takes over all the medications, the ordering of supplies, they change your pharmacy, it's incredible how they change your life. So, this means, I am expected to change everything back and get Daniel covered by medicaid, medicare for the surgery. They have certainly made my life hell.
I have heard only good things about hospice but this organization has caused a lot of upheaval in our lives, breaking confidences, telling lies to a nurse, really causing some major concerns.
I guess my day today will be filled with calling the other hospice groups in our town and asking them if they will take Daniel as a client. I think he would be a money maker for anyone who is willing to take him on but what do I know?
If any of you have any experience with hospice in Missoula will you please let me know you opinions and suggestions. I am truly at a lost as to what to do now.
Daniel's father, John, and his wife, Janice, happened to stop by in the middle of the meeting and were just as upset as I was. Daniel is totally freaked out and wondering what all of this means to the care of his final stages of life. It was a mess. I'm crying, John's yelling, Daniel is being reasonable and finally after everyone left asked me to start looking for different hospice groups.
Thank goodness Daniel has the sanity of the group. I feel so unsupported, I even asked where is their compassion? They told me the people in the room had compassion but they were apart of the team who made the decision. I told them to hug their healthy kids. Angry? Yes, very. Heartbroken? Yes, very. Lonely? Very. Confused? Yes.
I'm so thankful for the nurses Daniel has, they will group together and see us get through this time. Mother bear, yes I am, I have to be.
I love you all.
Wednesday, April 11, 2018
Sunday, April 8, 2018
April 8, 2018
The difference a week makes, can be a wondrous adventure. Daniel started eating some real food this week and he has been in less pain. He is very content and basically very happy.
Friends can change your life. Daniel has several friends he has known for years. Owen and Cory paid a visit to watch a very dumb movie with Daniel. The laughter and the comments coming from the bedroom made everyone's heart grow so large, it was contagious. Daniel has been pretty happy ever since. Owen's dad, Tom stopped by too. Tom has been a big part of Daniel's younger life and provided so much support to us while Daniel and I were living together. It was a flashback to the "good old days" and love was surrounding Daniel in every direction.
Thursday night, was interesting, the power went out in Daniel's area of Missoula. I have tried to provide all the back up supplies necessary for the nurses to be able to take care of Daniel. We really need a generator in the apartment building but of course the company thinks it is way too expensive to provide. I wonder if they would think that way if their beds lost power and flatten down to rest on the springs of the bed and there was no rotation system in place and they had no idea when power would be returned. The lessons I would love to teach people who fight against funds for the handicapped people in America have my ire big time.
Thankfully, when we purchased Daniel's new bed, I made sure he had a back up battery on it for times like this. I have provided a multitude of flashlights, a big lantern, and a cap that has lights in it so you can give meds hands free.
Well, our night time nurse truly freaked out when the power went out. He couldn't find any of the flashlights, the lantern or the cap. The battery operated suction machine had not been charged, the batteries for Daniel's ventilator had not been charged, the battery in his machine was charged so that was good. Then we had a major problem with the oxygen. It usually has a valve on the front so you can hook up the oxygen tubing to the big tank of liquid oxygen and you're good to go. Of course, the valve had been removed, have no idea why. Then the nurse didn't know how to fill the portable oxygen tanks. Daniel was texting me, he was also texting another nurse. The nurse on duty would not slow down to listen and would not stop to listen /read Daniel's lips as to what to do. Daniel was using his text to speech, he was trying everything he knew to tell the nurse what to do. Please remember he is doing this with 2 fingers that he can move, if the pad he uses as a mouse slips, he can't move it back in place. He is so amazing, I mean truly amazing!
Now that it's over and all are safe, I want to make it clear I am not putting down the nurse on duty. It's intense taking care of Daniel and when things like this occur, you lose your mind. Common sense goes out the door, and you're so scared he's going to die if you don't get everything done quickly you simply forget your name. Some people/nurses are much better in critical situations than others. I have begged not to be his nurse because this would be me, running around not able to remember anything. I'm not a trained nurse, I just play one at Eagle Watch. (There were some residents at Eagle Watch that I have known for years, about 2 or 3 years ago, they stopped me and asked, "Is it true that you are Daniel's mom?" When I confirmed, they started laughing so hard, and told me they thought I was a nurse and tried to be on good behavior around me! Now I get to hear the dirty jokes too. I love the residents at Eagle Watch, they have their own community and support one another.)
So things are great right now. I even got a text from another long time friend, Molly. We had just been talking about her to a nurse. Daniel wanted to tell Molly stories. Those two, I swear have either been brother and sister before, or husband and wife. They would misbehave (we're talking 3-4 year olds) and we would put one in time-out, the other one would beg to get the time-out kid free. Molly's mom and I talked our heads off about how to be kind to your friends, blah, blah, blah. As soon as the time-out was over they would go right back to arguing or whatever they were doing. It just was their way of communicating. Daniel explained they had planned to buy a laundromat and would sell doughnuts while the people waited for their clothes to wash and dry. Pretty creative kids! Molly will be visiting this week.
Friendship, nothing is better in life, to know you are loved and people do care about you. Daniel says he feels love all around him. It doesn't matter if you are there in person or I tell him Justin sends his love, Aunt Martha is thinking of you and sending her love, he feels it and gets it.
Love is truly all there is and I send you all of my love.
The difference a week makes, can be a wondrous adventure. Daniel started eating some real food this week and he has been in less pain. He is very content and basically very happy.
Friends can change your life. Daniel has several friends he has known for years. Owen and Cory paid a visit to watch a very dumb movie with Daniel. The laughter and the comments coming from the bedroom made everyone's heart grow so large, it was contagious. Daniel has been pretty happy ever since. Owen's dad, Tom stopped by too. Tom has been a big part of Daniel's younger life and provided so much support to us while Daniel and I were living together. It was a flashback to the "good old days" and love was surrounding Daniel in every direction.
Thursday night, was interesting, the power went out in Daniel's area of Missoula. I have tried to provide all the back up supplies necessary for the nurses to be able to take care of Daniel. We really need a generator in the apartment building but of course the company thinks it is way too expensive to provide. I wonder if they would think that way if their beds lost power and flatten down to rest on the springs of the bed and there was no rotation system in place and they had no idea when power would be returned. The lessons I would love to teach people who fight against funds for the handicapped people in America have my ire big time.
Thankfully, when we purchased Daniel's new bed, I made sure he had a back up battery on it for times like this. I have provided a multitude of flashlights, a big lantern, and a cap that has lights in it so you can give meds hands free.
Well, our night time nurse truly freaked out when the power went out. He couldn't find any of the flashlights, the lantern or the cap. The battery operated suction machine had not been charged, the batteries for Daniel's ventilator had not been charged, the battery in his machine was charged so that was good. Then we had a major problem with the oxygen. It usually has a valve on the front so you can hook up the oxygen tubing to the big tank of liquid oxygen and you're good to go. Of course, the valve had been removed, have no idea why. Then the nurse didn't know how to fill the portable oxygen tanks. Daniel was texting me, he was also texting another nurse. The nurse on duty would not slow down to listen and would not stop to listen /read Daniel's lips as to what to do. Daniel was using his text to speech, he was trying everything he knew to tell the nurse what to do. Please remember he is doing this with 2 fingers that he can move, if the pad he uses as a mouse slips, he can't move it back in place. He is so amazing, I mean truly amazing!
Now that it's over and all are safe, I want to make it clear I am not putting down the nurse on duty. It's intense taking care of Daniel and when things like this occur, you lose your mind. Common sense goes out the door, and you're so scared he's going to die if you don't get everything done quickly you simply forget your name. Some people/nurses are much better in critical situations than others. I have begged not to be his nurse because this would be me, running around not able to remember anything. I'm not a trained nurse, I just play one at Eagle Watch. (There were some residents at Eagle Watch that I have known for years, about 2 or 3 years ago, they stopped me and asked, "Is it true that you are Daniel's mom?" When I confirmed, they started laughing so hard, and told me they thought I was a nurse and tried to be on good behavior around me! Now I get to hear the dirty jokes too. I love the residents at Eagle Watch, they have their own community and support one another.)
So things are great right now. I even got a text from another long time friend, Molly. We had just been talking about her to a nurse. Daniel wanted to tell Molly stories. Those two, I swear have either been brother and sister before, or husband and wife. They would misbehave (we're talking 3-4 year olds) and we would put one in time-out, the other one would beg to get the time-out kid free. Molly's mom and I talked our heads off about how to be kind to your friends, blah, blah, blah. As soon as the time-out was over they would go right back to arguing or whatever they were doing. It just was their way of communicating. Daniel explained they had planned to buy a laundromat and would sell doughnuts while the people waited for their clothes to wash and dry. Pretty creative kids! Molly will be visiting this week.
Friendship, nothing is better in life, to know you are loved and people do care about you. Daniel says he feels love all around him. It doesn't matter if you are there in person or I tell him Justin sends his love, Aunt Martha is thinking of you and sending her love, he feels it and gets it.
Love is truly all there is and I send you all of my love.
Thursday, April 5, 2018
April 5, 2018
Daniel is feeling much better, at least he is back to talking, playing games on his computer so life is pretty good. I guess we just need to get used to the roller coaster of life.
We had a nurse call off for her shift and my immediate reaction is one of panic. I do not like being the nurse on duty, I panic big time since Daniel has been so sick. Our fantastic Rhonda, and wonder nurses, even the owner of the nursing business we use, filled in the 6 hour shift, it took 4 people but everyone pulled together and saved my butt. Or rather saved Daniel's butt. He needs nurses at this point.
In Montana we have a law in place that states in home health care, if a nurse can't fill her shift and there are no other nurses available then a parent or a guardian have to fill in the shift. We have a desperate need for home health care nurses out here. So I understand why they had to implement the law but.....
Today will be super short I have a list of things to get done however I had to share the good news.
I love you all.
Daniel is feeling much better, at least he is back to talking, playing games on his computer so life is pretty good. I guess we just need to get used to the roller coaster of life.
We had a nurse call off for her shift and my immediate reaction is one of panic. I do not like being the nurse on duty, I panic big time since Daniel has been so sick. Our fantastic Rhonda, and wonder nurses, even the owner of the nursing business we use, filled in the 6 hour shift, it took 4 people but everyone pulled together and saved my butt. Or rather saved Daniel's butt. He needs nurses at this point.
In Montana we have a law in place that states in home health care, if a nurse can't fill her shift and there are no other nurses available then a parent or a guardian have to fill in the shift. We have a desperate need for home health care nurses out here. So I understand why they had to implement the law but.....
Today will be super short I have a list of things to get done however I had to share the good news.
I love you all.
Tuesday, April 3, 2018
April 3, 2018
I haven't written in awhile because Daniel has been in a lot of pain lately. The blockage is playing games with his body once again. and he has been sleeping a lot and not eating too much. Soup and broth seems to be his diet these days.
He certainly knows his body and what he needs to do and not do. I keep coming up with ideas to cook for him like a small sweet potato casserole, I know he loves sweet potatoes but I think they would be hard on his digestive system right now.
I know he loves key lime pie, I wanted to fix that for St. Patrick's Day, we had even decided on a ginger crisp crust, I'm feeling really hungry all of a sudden. I ordered actual key lime juice, thank you Amazon (even though I hate you work ethics). We were both excited about that one but he wasn't really feeling well enough for that one to be made either.
I need to really listen to him a bit closer. He had come up with the idea of peanut butter cookies when we realized we had an abundance of peanut butter, same thing, when we offer to make them, not the right time.
Daniel loves cooking and eating fresh made anything. Since he can no longer cook himself or even help with the process, he loves the smell of something baking. All of his denials are setting off alarm bells in my heart that things are going downhill fast. I promised I would not ask him to stay here longer than he could, but wow, I want to, I want to beg him to stay another life time, another year, another month.....
My major issue is that I like him, I really do like him. Not only do I love him, but I like his friendship. I like to do things with and for him. I like his attitude (most of the time), I like the adult he turned out to be. He's not an angry man and he could have chosen to be, he is grateful. He's frustrated and uses the limited control his has in "strange" ways, mostly on his care givers. However over all, I'm very happy to hang out with him.
This is getting too long. I have more to say but I will wait for another day.
Love to you all.
I haven't written in awhile because Daniel has been in a lot of pain lately. The blockage is playing games with his body once again. and he has been sleeping a lot and not eating too much. Soup and broth seems to be his diet these days.
He certainly knows his body and what he needs to do and not do. I keep coming up with ideas to cook for him like a small sweet potato casserole, I know he loves sweet potatoes but I think they would be hard on his digestive system right now.
I know he loves key lime pie, I wanted to fix that for St. Patrick's Day, we had even decided on a ginger crisp crust, I'm feeling really hungry all of a sudden. I ordered actual key lime juice, thank you Amazon (even though I hate you work ethics). We were both excited about that one but he wasn't really feeling well enough for that one to be made either.
I need to really listen to him a bit closer. He had come up with the idea of peanut butter cookies when we realized we had an abundance of peanut butter, same thing, when we offer to make them, not the right time.
Daniel loves cooking and eating fresh made anything. Since he can no longer cook himself or even help with the process, he loves the smell of something baking. All of his denials are setting off alarm bells in my heart that things are going downhill fast. I promised I would not ask him to stay here longer than he could, but wow, I want to, I want to beg him to stay another life time, another year, another month.....
My major issue is that I like him, I really do like him. Not only do I love him, but I like his friendship. I like to do things with and for him. I like his attitude (most of the time), I like the adult he turned out to be. He's not an angry man and he could have chosen to be, he is grateful. He's frustrated and uses the limited control his has in "strange" ways, mostly on his care givers. However over all, I'm very happy to hang out with him.
This is getting too long. I have more to say but I will wait for another day.
Love to you all.
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