I pulled myself together enough to once again write a blog. I invite you to log onto the home page - www.thealzheimerspouse.com - and read about what has been going on with Sid, the nursing home, Hospice, and myself these last three weeks. There is information in it that will be helpful to anyone in any stage, whether their spouse is at home or in a facility. If you do not need the information now, you will need it in the future.
If you wish to make comments or have more information to add that will be helpful to all of us, please post it here. Thank you.
Joan, I am sorry you are having such a hard time. Thank you for taking the time to share this so that others can learn from this. Sending prayers of strength to you.
Always so great Joan when you find the energy to write here. Miss you and certainly understand the gaps.
One of the things I have learned in this journey is that even when our loved one goes into care, our work continues. It is different, however, maintaining a strong advocacy role takes a huge toll on us. I think society thinks that once someone goes into a facility the spouse now can rest easy. Far from it!!
joan, Thank you for telling us about this. What disturbs me most is that the decisions you are describing were made by administrators and nurses who work for Hospice, not for Medicare. I have no doubt that these Hospice nurses and administrators are under great pressure from Medicare but I do not believe them when they say that the rules provide for no leeway or interpretation. That assertion is the classic mantra of a bureaucrat. (If the governor of Florida was lying in that bed, believe me, there would be a lot of room for leeway and interpretation.) Knowing this, I'll be prepared for the worst when my husband's time comes.
The "palliative care" option offered by the nursing home sounds like a very good alternative. I don't understand why you had to be the one to suggest that. My sympathy and best wishes are with you and also with Sid. He made a fabulous decision when he married you.
Ron was at home until the end, but that was my greatest fear during the 10 months he was with hospice. Every 3 months I wondered if they were going to say he wasn't getting worse so would be disenrolled. The nurse kept assuring me that it wouldn't happen. There were times when I think they were saying he was worse than he was, but at least they never took him off hospice.
Joan, It has to be devastating for you to see Sid in this condition. My DH had Influenza A and a bowel blockage a few weeks ago, and spent 8 days in hospital. The hospital staff was great, but the stay was terrible for him. They tried at least six times to intubate him, and then x-raying to see if the tube was in place, but it always seemed to coil and had to be removed and attempted again. It was terrible. He also had an IV, a catheter, oxygen, etc. … a very unpleasant experience, in unfamiliar surroundings, with people who were strangers treating him. After his return to the NH (and seeing that he was glad to be back!) I also decided that, given his mental state (“has significantly declined in his mental capacity, including the ability to express himself, understand where he is and why; has become so restless”) and unsettled, that I could not put him through this again. I spoke with our family, and then with the NH staff, and after being advised that, if I do not want him to be returned to the hospital, they can treat him with antibiotics, when necessary, but that he would stay in the NH, in surroundings he is familiar with, and staff he has come to recognize, but given the treatment he needs. He had another setback, and I stayed two nights with him in the NH, and have witnessed the care and kindness of the overnight staff; it has been such a relief for me to see how they interact, and how comfortable he is with them. He is now very slowly trying to recover – he needs oxygen, is very tired, mentally very slow, has lost weight, etc.
I am telling you of our experience so you will know that I understand where you are coming from, and I wish the best for you and Sid. In spite of what you have said about ‘falling apart’, you have been amazingly strong. Hang in!
Joan, Thanks for your very informative blog on the Hospice process. I am so sorry you must deal with this additional anguish. I know how devastating watching Sid moving deeper into the disease is for you. I hope you can rely on the nursing home for the necessary support during the days ahead. It's amazing to me that even in the midst of your nightmare, you still take the time to reach out and help others.
When I put my husband's aunt on hospice they told me that if she was discharged I should appeal, that they had never had a family lose an appeal. They didn't tell me I would have to pay if I lost, but she is 103 so it would probably be safe in her case. The success rate of appeals may vary from place to place, but it is a possible question to ask. My husband's nursing home is very good at palliative care, so I won't probably put him on hospice unless he needs a special Broda wheelchair that hospice would provide.
I just wanted to say I'm so sorry you're going through this, but thank you so much for sharing your experiences. Myrtle is right, Sid sure made the right decision when he married you. But I know he'd do the same for you. I'm sorry you have to keep fighting, but I'm glad you're finding the strength to do it. I'll be praying for both you and Sid.
That's the difference between having Hospice at home and having Hospice in the Nursing Home. In the NH, every single blink, pee, piece of food that is eaten or left on the plate, sleep, EVERYTHING 24/7 is documented by the nursing staff. Unfortunately, the staff is continually changing. I don't mean changing shifts. I mean that there never seems to be the same nurse on the same shift. They are switching them around all of the time, so the notes are being written by nurses who may know the patient for a few weeks, a few days, a few hours. Everyone's perspective on what he can and cannot do is different. Then the Hospice nurse and CNA come in, read the notes, make their own observations, and there is no consistency.
When the patient is at home, you have more control, the observations and notes are YOURS, and the Hospice nurse is more likely to lean in your favor because it's more subjective - there aren't an encyclopedia of notes by 15 different people.
Joan, Musical chairs is correct. I feel like the chairs were set in up in the circle, the music is playing but there is no one to stop the music, so I just keep walking in a circle. DH was placed in hospice in September of 2012 and released to palliative care in March of 2013. The one thing that bothered me when he was being released from hospice care was the hospice social worker calling me and asking if I thought DH would be dying within the next six months? I kindly told her that she had called the wrong number and would need to hang up and call God. DH did receive excellent care while in hospice. Palliative care consists of an RN checking him once every 3 months and the hospice physician checks him annually. I can't grasp why dying patients and their family members receive a much higher quality of care with hospice than an old feeble person in a NH that just needs help to live. The toll on their family has to be just as devastating. I know we can't beat the bureaucracy so I will just have to keep walking around in the circle. It is all just so heartbreaking. I wish peace for both you and Sid. Thanks for keeping us somewhat sane and giving us understanding friends on this board.
Hospice at home was great in some ways--billing Medicare 100%, providing all equipment and supplies, and at least sending me aides for one hour x five days. It was not-so-great in that the aide hours were woefully inadequate, DH was never seen by the Hospice physician--everything was relayed to the physician by the nurses who made the home visits, medication management was woefully inadequate until the very end, and respite care in the nursing home for those five days was inadequate to say the least. (Care??? What care???) For the first six weeks or so, DH started to bloom and get better with all that support and the supplies we needed, and I was terrified that they would discharge him. They reassured me that they would try very hard to document somehow that he was deteriorating…and in fact, he did deteriorate despite everyone's (except the neglectful NH respite folks) care.At first it was subtle--eating less, words less intelligible sometimes, forgetting how to shave himself if you gave him his rechargeable razor. Then, of course, we got into the agitation and yelling, more poop issues, the falls, the "I want to go home" endlessly, and did I say the agitation and yelling…like 22 hours straight. The point I'm trying to make is that even as the patient's primary caregiver and only advocate from the home front, and as a nurse with 42 years experience, they didn't necessarily listen to me or take me seriously. I might as well have been talking to a brick wall about the inappropriate and inadequate meds…they just kept jollying me along…and made my life Hades because of it…until they finally started a little morphine a few days before he died. And did I say I'm a nurse! I understand the system, the terminology, how it's all supposed to work, etc., etc. I can communicate clearly with the team. But it didn't get me anywhere, really. As Joan said, "Being a vigilant advocate is exhausting." And as AliM said, "It is all just so heartbreaking." Yup, been there, done that. I think the problems across the boards come down to that it is all about the money and the insurance…what is billable and what isn't. It isn't about the patient, it's about the money. They are all constrained by that, no matter how hard they try, and that means that we as the caregivers have to try all the harder and screech all the louder to get our loved ones what they need. OK, end of rant.
Joan - as others have said advocating IS exhausting. Our journey is over but I'm advocating now for my 93 yr old sister in a nursing home. What I was told was to have Medicare investigate is their worst nightmare. So I think in our case that is what is going on. Sid is a lucky man, but I'm sure he knew that all along. Hugs to you. You gave me so much comfort by sharing your knowledge while I was still in the trenches. thank you