Praying for you during this difficult time. I guess this is what we all have to look forward to...hearing different stories have been preparing me but also it is very scary. I visited your daughters blog and just was able to relate to some of her stories and feelings during the different phases of the disease. You and your children are a blessing to your wife. Take care of youself Phranque.
Phranque, I've been quiet (for a change) but I think about you everyday. Let Hospice do the work. You just sit there and hold Audrey's hand and talk to her.
When I was with my SIL in her dying process, the nurse told me that human touch and speech was very important. Hearing is supposedly the last sense to leave. I would just take two fingers and stroke her cheek gently for hours on end and speak softly, saying her name often. They would tell me to go home but I knew it was only a matter of hours and I couldn't leave her. Strange how we come into this world alone and we leave the same way. We are garbed in love both times. I am thinking of you and your family and praying Audrey will look down on us and help us all.
Just can't get you and your family out of my mind...will put you on the prayer list at Mass tonight...stay strong..we are all here and send all our love and support to all of you and sweet Audrey.
It is now day 25 w/o food, and Audrey shows small signs of actively dying, but she maintains her awareness. We called in Hospice yesterday and asked for continuous care, which means a nurse will be here 24 hrs a day. A male nurse (I had requested only a female nurse who talks English) shows up at 1pm, and almost immediately answers his phone and starts talking about another case...Of course, Audrey becomes agitated, so I politely point to the kitchen, and ask him to please answer his calls out there. He continues his conversation, while I try to keep Daisy from barking, and Audrey from getting agitated. He then announces that he has to leave, but will be back in an hour. At 4PM, (is that an hour later?? or are my math abilities gone?) he arrives again with another Nurse (female), and they spend the better part of an hour filling out paperwork, and it became obvious that she was training the male nurse. Meanwhile, we have Kim, Tori, Gloria and 4 kids jumping in the pool, and trying to stay quiet. I noticed that Audrey was soaked, so I tell the nurses, and only the male nurse offers to help....I politely decline and Kim and I change her, the sheets, and make her clean and comfortable again. The nurses meanwhile are talking openly about Audrey, and we both mention that her hearing is perfect, and she can understand all that is being said....They continue, answering their phones, fiddling with endless reams of paper, then announce that a nurse would be here at 8pm to 8am, then another at 8am. I ask that it is not necessary to have someone here to watch both of us sleep, but they insist that it must be that way. So I said that I only wanted a nurse to stay a few hours at a time, to give me a break...They replied that they would look into it. At 8PM, Another nurse shows up, and I explain what I want...and she begins to do her paperwork. OK..15 minutes later, after Daisy perfected her barking skills , she sits in the room and stares at Audrey. Of course, she is afraid, agitated, restless, etc because her routine and quiet time has been shattered. I mention her med schedule, and the nurse smiles as I administer her risperadone. By this time, I realize that I will be spending the next three hours training this person...no, you cannot roll her on her side, because her shoulder hurts and she will scream. No you cannot talk on your phone because it will make her agitated. I explained how she liked to watch her movies, (usually the same 5 that have been played over and over), and also mentioned that she wants to be included in conversations....I politely mention that she is still very aware, and stuggles to speak her mind. I try to explain the things that sooth Audrey, how to make her smile, how to make her comfortable, and by now, I can see tears coming down her face...so after a record 58 minutes, I realize that this is more stressful for me, and disrupts the routine that we have established for her. So I tell her that this is not what I expected, and she mentions that they are only here for 3 days of continuous care, and that their purpose is to train me in the administering of meds, and how to keep her comfortable. A gong goes off in my head, and I realize that I am training them, and that I felt that we had all this under excellent control. So I ask her to cancel the service, and so she calls the office... I expected her to leave, but she sits there, on her phone, and waits. I mention that she can leave if she likes, but she says that she must wait for doctor's orders and discharge... WHAT???? Discharge??? I felt that I was in an emergency room, where you wait and wait, fill out forms, and then wait some more to be treated....and then you cannot leave until they "take care of you"....Finally, 1 hr and 58 minutes into this, she gets the orders, and says goodnight.
Hospice may be good for people who are unsure of what to do, but with our Caregiving trio, we have perfected her caregiving, and our caregiving comes from the heart. We know her likes and dislikes, we know how to dance and make her smile, we know how she reacts to medications, and hospice has no clue. We know how to take care of her every need and wants, and know to include her into our caregiving. I guess the biggest difference is that hospice treats a person like a patient. We treat her like an individual. With that said, I will keep hospice only for the mandatory nurses visits, and hopefully I do not have to repeat the same information to any new personnel. So far, I have talked to 5 different hospice nurses, and it is obvious to me that whatever information I give them is just not shared with the others. I am also convinced that they do not prepare themselves by reading her history and getting acquainted with the specific needs of a patient. I am not being negative....I am stating an observation. I will only be calling hospice after she finally passes away, and only after we have had our moments alone with her. If I need respite for a few hours, I will call on family and friends, because they know her and I will not have to train them. I realize that Audrey can only interact with 1 person at a time, two if she knows both well...we have limited people in her room to a maximum of 2, because she cannot interact with a crowd. She cannot follow conversations and gets totally confused. In all, I have become convinced that there is no better caregiver than those who truly love her, and I am counting my blessings to be so well supported by my son and daughter. I would wish that everyone afflicted with this disease would be so fortunate. Meanwhile day 26 without food begins, and I am tired of people asking me how she is doing.....she is dying very well, and is doing it with a flair of dramatic abilities, and will exceed our expectations on her tenacity and determination to stay alive.
Frank, I am so sorry you had this type of experience with Hospice. My husband has been on Hospice since April. Everyone has been wonderful. When the time comes, we also will have 24 hour care, however, everyone that would come, my husband has seen. They are forbidden to answer their phone unless it is an emergency, this is when they are even here bathing him....then they leave the room. If it is from another Hospice employee, it comes as a e-mail, not a call. I am so proud of your children for the help, support & love they have showed you & their mother. I am keeping you all in my thoughts & prayers.
Frank I am so sorry that hospice turned out to be a burden instead of a help. Your observations are very valid. I will not ask how Audry is doing-just how you and your family are doing. Perhaps you should start your own hospice or at least hospice training for hospice.
Phranque it sounds like your wife and mine are running a parallel course. She too drinks very little and eats only a bite or two of food on some days is very weak and cannot do anything without help. Her decline has been going on for over two months now and I really don't know what is keeping her alive, but she is aware of what is going on around her most of the time. We also had hospice come in but after a few days they said she did not meet their criteria and discharged her. I agree with you wholeheartedly that only me and our daughter know what she needs and how to give her that. She actually says she is ready to go and wishes she could go to sleep and not wake up, but it has not happened yet. Meanwhile we care for her and try to make her comfortable without any outside help and pray that her suffering will soon be over. Hang in there and love her as best you can. May God bless.
Bluedaze. I sometimes feel that I would be a caregiver trainer. Some hospice people are hopelessly unprepared. I use the following comparison. My son is starting a job on Monday with vocational rehabilitation. He has read all the history, reports, evaluations, and knows the person who he will be testing on Monday. He knows her skills, test scores, psychologist evaluations, facts about her home life, her goals, her personal history, and he will be going there totally prepared, because he has simply read all the available information. It is called "preparation", and yes it involves a bit of additional work. I can attest that most nurses are assigned patients without any knowledge of their circumstances, and absolutely no preparation. My mother has Home health aides and nurses, and there have been many new ones. I am totally surprised when they show up, not knowing the first thing about my mom's medical history, nor any clue on what her medical problems are. My mom and I always get a huge laugh when she announces to a nurse that she had bowel movement.....the nurse will go in and try to change my mom;s diaper...not realizing that she has a colostomy, and that is a whole different procedure altogether. Usually a visit to any hospital shows me how unprepared and anonymous the nurses can be. A nurse reporting to duty will be told..you have the west wing today...and she has no clue of the conditions of each patient. Unless she actually reads the medical history prior to entering the room, she has no clue about the patient she has to care for. She is unprepared in my opinion. She has no idea of what she is walking into. In my background, I always dug for as much information that I could about my customers....likes, dislikes, personality, triggers, hot buttons, etc...When I met with them, I felt that I knew them, and that all the knowledge I gleaned could serve me well at some point. My only criticism for Hospice is that their people are unprepared. They are walking in on a stranger, in unfamiliar surroundings, and have not been briefed by contact nurses....I had to repeat my story 5 times so far to 5 different nurses...You would think that once would be enough.
Phranque, I continue to ck in to see if you have any updates. Sorry you had to have a distressing experience at a time like this. Praying for a peaceful passage for Audrey. Prayers to all the family for strength in these difficult days.
Phranque, I decided to write a short document for the home health aide when a new one shows up. I ask them to sit and read this first and then if they have any questions, to ask. I list her schedule what she does when, once all of her needs have been address, then I list household task that I expect them to take care of. It works great.
Oh Frank ;-( I'm so sorry that the hospice providers in your area are so lacking in knowledge and procedure. However, I'm sure that they are not used to walking into a situation that is as fine-tuned as yours. My guess is that they usually walk into chaos and take over from there. You, Kevin & Kim have created a serene well oiled schedule in which Audrey is comfortable. It's sad that Hospice could not assist you on your terms. Maybe you should put the above posting into a long letter to the director of your local hospice. Your candle is lit daily and you all remain in my heart and my prayers. Arms around, Susan*
Frank, so sorry that the hospice help didn't work out for you. When my husband was actively dying I kept the visits from hospice to just the usual schedule. The RN came twice a week and the aide was here three days. They both stayed only for a bit and were out of my way. It wasn't that I didn't appreciate their help, but I was doing fine on my own. They did call and ask if I needed anything but respected my abilities to handle the end of life issues.
You and your children are obviously able to do this on your own and the hustle and bustle of all the activity is not needed.
I continue to keep you all in my thoughts and prayers....
I do not intend to be critical of hospice services...they do the best they can. But it is not what I want nor need. Hospice called me, and confirmed all my thoughts....they did say that nurses do not have the time to read all the computer notes and requirements, and that they do come in blindly, and that I would have to instruct each nurse on our situation. I politely mentioned that this caused more stress for me and that it was easier to continue what we were doing. Our assigned nurse is only available from 8-5 Monday thru Friday. Weekends are covered differently, like a box of chocolates...ya never know what you're gonna get (Forest Gump). So now, I need to get released from continuous care, sign a third DNR, and get reassigned to regular Hospice. I do realize that all that they do is motivated by legal ramifications, and that unless they had a dnr, they would have to do CPR, etc in case she stopped breathing....(Talk about riding a dead horse??) So I have learned my lesson....I hate what lawyers have done to the medical profession, and how they have to cover their legal royal behinds on all these circumstances. They seem more concerned about documentation than the actual care of a patient...Hospice may be great for someone willing to set back and let them run the show, but for me, it is a total disruption of the fine tuned routine that took years to perfect. We are not needing anyone to be watching what we do instead of jumping in and really helping. I have received tons of bad advice, bad diagnosis, bad opinions, messed up prescriptions and questionable diagnoses over the past 10 years, and I really hate the lack of coordination between the medical profession. Hospice was like dealing with corporate America....each department has its function, and operates independently from each other..... No one seems aware of the whole, but only considers its own part....The eyes, ears, mouth, nose, and brain each operates in its own little world, and do not realize that it is part of a head..... OK...I am back in my environment....and I will continue my caregiving independently....I am strong, and able to google anything that comes my way..and I have the best possible support team possible......and I am blessed, fortunate, lucky, grateful, and totally happy that all of you are still cheering me on. It is your support and encouragement that makes this trip so much easier.... Thank you all (YAW'L???) for being there.
Frank, I hope your bad experience with hospice in this instance won't discourage others on this board from availing themselves of hospice support if and when needed. I know that many of us here have had very good experiences with hospice, so I'd surmise that what you ran into was just a case of a very poorly-run local organization, as attested to by repeated instances of unprofessional conduct, coupled with perhaps a failure on your part to communicate ahead of time as to what "24-hour hospice support" could and should consist of. You have my heartfelt sympathy in this ordeal that all of you are having to deal with.
I am reminded of a person who had bad vision...he goes to a doctor, and says that he can't see.. The doctor gets a pair of glasses out of a box and says :Here take these Glasses" The patient says "Everything is blurry" so the doctor reaches in the box again and says "Here, you need these glasses. The patient replies "I still cannot see clearly" The frustrated doctor says "I know you need glasses, but when you get them, you are still complaining.,...
I do not mean to discourage hospice by any means. I value their assistance. But, they do seem to be financially motivated, and sometimes, try to sell services that are not really well explained, nor suitable for the circumstances. I am also reminded that Audrey had Hospice when she was caring for her alz mother....and she swore she would never get them again....too much agitation for a patient... My only desire is to provide a peaceful and calm environment, with concentration on her care, and attention to the things that are important and critical to her. Each patient is different, and she has been a most difficult one for me.... Hospice has now called 2 times, wondering why I cancelled the continuous care...I reminded them to review their notes, and that I did not want nor need round the clock care....I just needed one assigned nurse to check on her every 2-3 days, and not someone who would watch her sleep...I had made my needs, wants and desires known to them twice, but somehow, this got a bit misinterpreted.... Another anoying thing is that I gave them my cell phone as a contact number.....so I cannot help but wonder why they are calling my home phone, when I specifically gave them the only number that I answer..... Well, it was worth the shot, and I will appreciate hospice more when they actually make my life easier instead of harder....
Hang in there Frank. You are doing an incredible job and I stand in awe of your strength and compassion. I think of you and your family so often during my day. Bruce, you keep up the good work too. This has to be an indescribably painful journey. The end of an already exhausting path we are all on.
I read all your posts and think what a strong person you are. I hope when I am faced wwith my DH decline.I will be able to do what you are doing. My prayers are with you.I SAT WITH MANY PATIENTS AT THE nh AS THEY WERE DYING,BUT i AM SURE IT WILL BE DIFFERENT WHEN IT'S YOUR SOULMATE.
Frank, I am so sorry for the ordeal you had and for the added stress to you and Audrey. I have had good experiences and a bad one with Hospice. When Lynn was in the hospital and we thought he was not going to make it, they were called in. I found them extremely invasive and lacking in common sense. They also offended me by speaking about Lynn as if he wasn't even there. The things they were saying should NOT be said in front of a patient. Even when I asked them to not speak of such things in front of him, still they did. I hear all the time that the hearing is often the last sense to go... so why do educated medical professionals continue to speak in front of a patient that way? Disturbs me.
My cousin recently lost both of her parents. She was trying to care for them both alone. Having been a stressed out, overwhelmed caregiver, I recognized the signs of complete burnout. She did accept my offer of help and did call in Hospice. Much to our surprise they do not offer 24 hour care like we always were told they did. They will do a "training in times of crisis" much like the one you mentioned. 3 days is nice, but I think it leads people to the wrong conclusion that they will be there 24/7 until the end. She had thought they would be with her all the way, that just isn't how it was. They told her only if they had a volunteer could someone stay with her parents. They did offer aides and nurses to come in daily though. Unlike you and your family Frank, she was in dire need of their help. We are a small enough community that it was the same people coming over all the time so there wasn't the insidious need to always train and update new staff. They were pretty wonderful and were a huge help in her case.
It is too bad it didn't work out. I knew you didn't "need" their services, but it would have been nice for you to be able to take a break when you felt you needed one. I think of you daily...... lots of love and hugs ♥
As I analyze ( anal eyes) my situation, I am realizing that I called in Hospice for my own benefit, and that it was surely not for my dw's benefit. I am exhausted from the emotional trauma, and I thought that Hospice would provide me with relief. I did it for me and not her, and I lost the focus on what is most important...her welfare and her comfort.....This caregiving is for her benefit, not mine. (am I repeating myself??) Anyway, I am tired of the sole responsibility of deciding on her medications, her care, and her feelings, and although my kids have shared equally in all this, I felt that I could somehow shift this burden to Hospice.....In retrospect, I concluded that our situation is optimal, and there is little we can do to improve it. Many years of caregiving have fine tuned our method, and now is certainly not the time to change our momentum. I have renewed engergy and motivation in all this, and realize that "No one can do it better than a spouse"
Nikki- how well you understand....yes hospice does tend to speak as though the patient was not there....and yes they are there to "train me", not to provide care until she passes...I can accept a lot with all the ups and downs of this disease, but forgetting that the patient is there is not one I can ever accept. I did not like the fact that they would not include her in their dialogues, and that they assumed that she had no opinion or comment....
I no longer want a break...It is my race to finish...I am the last member on the relay team, and I really do not want to drop the baton before I cross the finish line, nor to I want to hand it off to someone who can;'t run as fast as me...
Phranque, just want to say that I hope today is a pleasant, easy day for Audrie, Kim, Kevin, and you. Ya'll are constantly in our prayers and thoughts. Take care and I think you made a great decision about Hospice. May God grant all of you rest and comfort today.......
I do understand Frank, and I too was very disappointed. I also would not accept their blatant disregard to Lynn. Perhaps no one can love him like I do, but they will damn well respect him! Yeah, I fired them too. I tend to do that a lot these days lol. I am still valiantly trying to find a way to bring Lynn home. He is getting excellent care at the nursing home, and I am able to see him at least once a day. But selfishly, I want him home with me. As you said "No one can do it better than a spouse"
"I no longer want a break...It is my race to finish...I am the last member on the relay team, and I really do not want to drop the baton before I cross the finish line, nor to I want to hand it off to someone who can't run as fast as me"................ that gave me chills Frank!
At the end of the Journey there is a doorway to pass thru, we are so afraid of where that leads we choose not to talk about it. We live in fear of the day, when we find the passage point before us. We go alone thru the doorway. The end of the journey should be as joyous as the beginning. We entered this world alone and were greeted to family, I believe their is a great cloud of witnesses that have gone before us to celebrate our journeys end and our passage thru the doorway.
Phranque -- thank you so much for your bravery and compassion in sharing your journey with Audrey. We are all learning from you. The compassion and love that you and your children are demonstrating is what each one of us would hope to receive in our end days. I'm sorry that the hospice experience hasn't been helpful and disappointed to learn of their disregard for Audrey's awareness. My mother had hospice care 20 years ago for pancreatic cancer and when she drifted into a coma, her nurse and nurse's aide were very careful to never discuss her condition while in her room. We always went to another part of the house to talk.
How sad that the nurses aren't spending the time to read the patient notes. And you definitely should be a caregiver trainer -- I think a book is in the works someday in your future.
I will continue to lift up Audrey, you and your children in prayer --
Frank - I suppose I'm very lucky because the hospice care we had when my dad was dying was absolutely wonderful. We had one nurse who came in three days a week for about an hour or so. She spoke to us very quietly and soothingly, which in turn soothed my dad. She bathed and changed him, turned him in the bed and put pillows behind his back. She gave instructions on how to give the meds to help keep him comfortable. I don't know what our family would have done without her. On the day he died, before he died, I was frantic and called hospice to ask what to do. That wonderful person came on her day off, talked to us, cried with us and told us it would be a matter of hours before he died. We kept a vigil by his bedside and when my mom, sister and I happened to be out of the room for a few minutes, he died. I felt horribly guilty that I wasn't there at that moment, but earlier in this thread someone mentioned that this is not an unusual occurrence. I felt so much better about not being with him at the moment he died after reading that.
My mom was in hospice two years later, but in a hospital after a fall which led to her being in a coma for five days. I was by her bedside every day and hospice came in to comfort me and take care of mom. The nurses were only in the room for special treatment of her. Otherwise, hospice and I took care of her. I hate to think what I would have done without the care of these wonderful people who handled, literally, everything that needed to be done before and after the deaths of my parents. For two years after my mom's death they worried about me and how I was dealing with it. They sent me prayers and beautiful cards, asking if I was okay. I will never forget them.
I'm sorry for your experience with hospice, because my experience was just the opposite. For my dad, I was given a choice of different hospices. I happened to pick the best one. Perhaps you have a choice in choosing different hospice care? Maybe you could look into that? I cannot imagine going through such a long vigil, even with the help of your wonderful children. Though our vigil was shorter, it was exhausting.
I salute you, Frank, for taking us through your journey.
Frank, I was one who encouraged you to call hospice so you could get some rest and turn over the "active" caregiving to them so you could enjoy the remaining time with Audrey. I am sorry, I should have known through your posts that no one would/could take care of Audrey as well as you, Kevin & Kim. And yes, Hospice was for YOU...so you could spend time with Audrey and not have to be the primary caregiver and enjoy the woman you love. I believe that one day I will have to call in Hospice and I hope our experience is better than that you've had. Thank you for sharing your difficult journey-you and your family are exraordinary and inspiration to us all. I don't know if I have it in me, but I will surely try. God bless all of you and thanks for keeping us informed as you go through this diffiult journey.
Phranque, I am just getting caught up in the hospice saga and I can tell you this i not how it should operate..The hospice services we had form my mom were superior..the nurses came in that first day to meet with us, discuss what and how they do things and asked US questions about what had been done so far. Then they went in to meet my mom and spoke to her gently and calmly and in an adult way..and my mom responded in kind...they said how glad they were to meet her and understand she is a nurse too...got some common ground...the next morning the hospice doctor came out to meet my family and in particular my dad ( who was a retired MD) and to assure him whatever my mom and he wanted done would be done..and my mom must have heard this as she decided to as my hubby would say " check out"..she died during the visit.
I must also share that I did volunteer with our local Hospice here some years ago before my own household life got too complicated..we had volunteers who would come stay with the LO so the primary caregivers could get a break...we did not administer meds. There are two different sides to our hospice..one side is medical and the other volunteers...
I am sorry you are having such a bad experience with your hopice..it should not work like this with complete nincompoops reporting and honestly behaving in such inconsiderate ways toward you and the family. You should NOT have to ask them to take calls in another room. They need to fine tune the training the hospice staff provides the nurses and volunteers. I would make beneficial suggestions to them.
I am so sorry Hospice did not work out. I was so hoping that they would be able to do the work so you and your children could just spend quiet time with your wife and their mother. I am so sorry. I wish I could say or do something to help.......
I am quite happy only having hospice on a weekly nurse visit. Yesterday was calm, quiet, and so peaceful. As I analyzed what hospice could provide, I realized that there was not much benefit for me. The majority of their time here was spent discussing the paperwork, and filling out forms. Other than the admission nurse, I have seen the "assigned" nurse only once. I also looked at the end of life kit that they sent... it includes 1. haloperidol take .5-1 ml every 6 hrs as needed for agitation/nausea,anxiety, as directed 2. furosemide administer 2.5-5 ml orally for volume overload, as directed 3. acetaminophen suppositories one rectally every 4-6 hrs as needed for mild pain/fever 4. prochlorperazine suppositories 1 rectally every 8 hrs for nausea/vomiting as directed 5. oxycodone .25-.5 orally every 2-3 hrs as needed for pain/air hunger, as directed 6. Lorazepam .5-1 tablet orally ever 4 hrs as needed for anxiety/agitation, as needed 7. hyomax sl 1 tablet under the tongue every 4 hrs for secretions, as directed 8. prochlorperazine 1 tablet orally every 6 hrs for nausea/vomiting as directed 9. one bottle oxycodone hydrochloride oral solution 100mg/5ml 20 mg/ml- with instructions "dilute before administration..Take .25-1ml orally under tongue every 2 hrs for pain or shortness of breath.
Now, I am questioning what they mean by dilute before administration...huh??? how much dilution??? I am confused and cannot understand what they mean
Now, ironically, you would think that they would provide instructions on the meds......NOPE....I asked several times, and each nurse said they were not sure... questions I had...do I continue the risperadone, the xanax, the vicodin.....do I include these new meds, discontinue the old, how do I dilute the oxycodone?? None knew....So here I sit with a pharmacy in my refrigerator, and I am wondering how much I can sell it all on Ebay. I am very reluctant to change her medication, because what I am doing is perfect (in my opinion.) She does not seem to have pain, unless you touch her legs, or arms, she is not agitated very much, and she is so much easier to manage than ever before....she sleeps most of the time now, and I am finding it so easy to care for her, but the silence and waiting is hard to cope with. I am patiently waiting for the nurse to show up, because I have so many questions and so few answers. I do not intend to be critical of hospice. I am a bit disappointed, but for me, I think that the only real value will be when she passes away, not having to call the emt, firetrucks, etc... I can only conclude that my situation has been truly unique, and that we solved most of the problems, diagnosis, and caregiving solutions mostly with the help of google and my kids.....I feel absolutely great about our technique, but realize that so many others cannot get the total support that I have been blessed with. No one can care like someone who really cares.
Phranque, when you hired hospice a hospice dr was assigned to your wifes care or at least her private dr maybe. you should call your hospice and ask to speak with her dr and or have them come out to visit her. there should have been an evaluation by a dr upfront prior to taking her as a patient. its very odd you are getting this uncaring help from your nurse. you can request a visit from the dr and discuss what your expectations are and how You want this to happen. they are here to serve your needs and your wifes and any questions you have should be addressed. i cant imagine getting this runaround from my hospice team. there is a 24hr tel to call day/night. i am sure you have one as well. please get hold of the dr assigned to your wifes care. with the new hospice regulations there has to be adr who is over her care.. get the answers you need from the dr directly. divvi
Jeez, when my husband was dying hospice gave me nothing like all the "stuff" you have. He was already on a Fentanyl patch and we continued that....they did leave some atropine to dry up any secretions and inserted a catheter so I wouldn't have to change him...other than that I was on my own and that was okay. I knew that if I needed them I could call, but he was at peace and that was all I wanted. I was happy to have them on board the morning he died.....the nurse arrived, called the funeral home and I didn't have to deal with that.
Frank, you are doing fine.....my hospice nurses told me that I was doing hospice work all along...just as you and your wonderful kids have done. You have always made good decisions in the past regarding Audrey's care....I am sure that will continue.
When we had Hospice, the med pack went in the fridge and I was told these were meds to be available in case of new issues which needed quicker response---not waiting for Rxs to be filled. They would instruct me if/when needed as to what to use and how. None of his regular meds were chamged until we had discussed what they were, what they were for, and then the changes we made were carefully done to be sure they were effective and were better than what had been. Mosrt of the "box"wasretrieved and discarded when they disenrolled us.
I have to agree that the Hospice you've been dealing with has significant care/service issues--regardless of your unique circumstances. However, keep at least miniumum services so you can have them aboard for the end calls. My Mom had the whole---Do CPR/Defib,Ambulance/declare st the Hospital--for my Step-Dad. Horrible stress for her, considering his passing was anticipated, just not when--Heart and Parkinson's issues. And she was stuck with all the bills for that because Medicare doesn/'t pay in those circumstances.
divvi- yes there is an admitting doctor for hospice, but I have yet to see him nor talk to him. I kept our pcp as primary, and that may be the reason why. Also, I have called their 24 hr hotline....Basically, they take the message. A while later, I get a call from a local person, who then takes a message and says that she will have someone call. A while after, I get a call from a nurse, but not the one who was assigned to me. (she only works 8-5 Mon-Fri). By this time, I am tired of having to explain everything 3 times....and ironicaly, I gave them my cell nr for direct contact (because I have bluetooth, and can answer my calls hands free) but they still manage to call my home number which I specifically asked them not to. I know that this hopsice has come severe administration problems and it is very obvious that they do not communicate with each other very well. However, I really do not want their services at this point....I only want the actual services at the end of life....and to be there to answer my panic questions... I am still waiting to hear from my nurse.....I put in the request on Saturday, and I was told that she would show up Monday morning.....but I forgot to ask which time zone they were in, so it must be morning somewhere...because it is almost afternoon here. I have to say that the past two days have been so much easier for me...In fact, I am fighting boredom, and I am restless...I guess it is just the anticipation of upcoming events.
Frank, you don't really need them at the end, either. If you talk to your funeral director now, you can get everything lined up. Then at the end, it's a matter of a couple of phone calls: your doctor, the funeral home, the newspapers (your obit is all ready). If hospice needs that much supervision from you, I don't think I'd keep them around. Keeping you in my thoughts and prayers.
I agree with Mary75 if hospice is that much of a pain in the a** I wouldn't give them another thought. This journey is hard enough without adding more stress. Talk to your pcp and see what your state requires for death notification and follow their advice. I know I will not call hospice again because it is a bill that I do not need not want to deal with. There will be no rescue efforts when the time comes so will just let her go in peace. Then contact the proper people. After all these years together (50+) it will be hard to watch her go but she will finally be at rest without the AZ. So I can live with that. Praying for each other helps a lot now that time is close. A lot of things that caused stress on the trip now have been washed away and are no longer that important. I would send you a hug but the girls might get jealous.
Phranque, Is the medication in it original box? (it should be) An Image of the box can be found here: http://www.outcomeresources.com/hospice-blog/bid/49302/Hospice-Medication-Update-Oxycodone-Oral-Solution-Availability
Hard to read on the site but on the side of the box under "Nurse/Patient" it describes how the medication can be added to 30Ml of liquid (juice) or food (applesauce) This is done to; make it taste better (some say it tastes frutty others bitter) Also if placed in water it might be easier to swallow becaue the low indicated dose is just 0.25 ml which is just a few drops.
Also as an FYI - most hospice is for terminal cancer patients. Their symptoms are different from end stage dementia. Cancer can have extreme pain and signifigant nausea. Hence many hospice care plans are to treat these symptoms. This is why most of the meds are "as needed". (and so many are for nausea) Adjustments are certainly needed for OUR type of problems. Stay tough, You are doing well! Jim
I would stay with Hospice for the end time. After the person takes their final breath all you have to do is make 1 phone call - to the Nurse at the number I hope you have. She or someone from her office will come out and verify death then make the proper calls. She will see that the proper Doctor signs the Death Certificate and make any other calls for you. If she did not come out - you would have to call 911 and have all the Fire Dept. and other Rescue vehicles at your house because the body would have to be taken to the Hospital for the Medical Examiner to sign the Death Certificate. (This is my assumption about the "after" because some legal person of authority has to sign off on the Death Certificate) You don't want to deal with that. Blessings to all.
Holding Audrey, you and your children up in prayer. What an inspiration you are. We may for a variety of reasons never be able to run the last lap for/with our dear one the way you have. However, we will surely be there holding their hand. May God continue to give you strength and peace. RJ
Day 28 without food/ Hospice Nurse came this morning. She is the first one that understands the situation, read her notes, and actually provided some help. Her predictions are that we still have 3-5 days, but that is also what the weatherman predicted...3-5 inches of rain...yet the sun is still shining. Go Figure. How can a weatherman keep his job, when he is 75% cloudy, 40% foggy, and has a 30% chance of being right. Anyway, our vigil continues, and tonight, we will have Kim, and the two grandkids stay overnight. This is a first time event, but we needed the closure to have the grand kids stay over at least once before she passes...We are still in the planning stages of this major event, and like usual, the decision will be based on our most scientific method...tossing a coin. I thank all of you for your wonderful encouragement and support, and for the misguided comments you make about my caregiving. I am only doing my best, and although that is not much, it is my best. And yes, I still laugh.... Last nite, Audrey outdid the capacity of her diaper, and I started gagging...and it was disgusting, until I went out, got the gas mask, and we all started laughing.....it made an unbearable chore actually quite pleasant.... Antidepressants are wonderful, but nothing elevates your mood like a good laugh, especially when it is not funny at all. I just hate to have to change my underwear each time.....
You sir, are an amazing man and your wife Audrey is an extremely lucky women. You are a gift to your family and this online family as well. Your stories and insights make me laugh and cry all at the same time. May peace and love that you have shared be returned to you 10 fold.
Oh Phranque, I was wondering how you did with hospice. (i was gone to remote cabin...no services soooo nice) You and your family seem to have things under control without outside problems coming in. My heart goes out to you all. p.s. my husband is (was) a lawyer and I blame him for most things that go wrong around here too!
While I agree that Hospice has more experience and a greater confort zone with terminally ill cancer patients, the care should be very similar except for high level pain mangement. Hospice has gone out of its way nationally to market them selves for "all end of life care" and therefore should have oriented their staff to the nuances of terminal dementia. Phranque so pleased you go a nurse who "had it together", you deserve that. And yes you can probably teach them more that they will ever know until they walk in your shoes. Still laughing as I picture you and your gas mask....all I have is a snorkle mask, Mrs Robinson like...maybe I will add it to my bag of tricks.