CAREGIVING: The roller-coaster of care-giving continues on its merry way. I put off posting because Kathy was going to start getting hospice services a week or two ago. At least I thought so. I want Kathy to be comfortable. Apparently, they need to have a prognosis of six months before you start hospice. My guess is that it has something to do with money: insurance or MediCare.
If you have followed this blog you might remember being here before. Last spring, Baystate VNA sent palliative nurses to evaluate Kathy and discuss hospice. They looked at Kathy sitting and smiling on the sofa.
They said “not yet”. They did help us order the hospital bed and the hoyer lift to make life a little easier.
A few months later Kathy was hospitalized with pneumonia for a week and a half. The doctor discussed hospice with me. At that point I just wanted to get her home to die. But the hospital beat the infection with antibiotics. And the feeding tube and suctioning gave us extra time.
There is no always; no totally predictable course with Huntington’s Disease. Everyone is different.
Patients with Huntington’s Disease usually don’t have nine lives, either. Some with feeding tubes can go on for quite a while. Jennifer Jackson, Kathy’s doctor talked about hospice and winding things down in November. And during her follow-up appointment last month I brought up palliative care. She felt like it was worth considering sooner rather than waiting. At least we can get more benefit from their services. It would improve her quality of life.
A few nurses ago, a visiting nurse explained some of the difference. Hospice nurses have other tools in their tool kit. They can give specialized care during the end of life. They will have certain meds that can help with some of Kathy’s breathing problems. There are meds for the anxiety and agitation that come at the end. Kathy battled with anxiety for many years. These meds may help with her comfort.
A palliative nurse named Christy came once last week. She felt that Kathy was ready and referred us to Mercy Hospice. Steve, a hospice social worker visited the following day. He tried to explain the differences between hospice and home care. I’m still confused by where palliative nursing fits in. It doesn’t matter in our case. We are jumping ahead to hospice.
This is just my understanding in a nutshell: A visiting or home care nurse is trained to call an ambulance first. A hospice nurse is going to try to do everything possible to keep her at home. Everything would be done to keep her comfortable. But nothing should be done that would prolong her life or an attempt to cure anything. If something like her feeding tube came out or if she fell somehow, then the hospice would bring her to the hospital. Her feeding tube is permitted because it was put in before entering hospice. Otherwise it wouldn’t. Kathy was in and out of sleep, but I didn’t want to go off into another room to talk quietly about her life.
The rational side of me knows what will happen not just to Kathy but to all of us. But it is still easier for me to joke or write a funny song about death than talk about it. I’m working on it, but I am still not used to talking about it: death. Even Steve would drop the volume of his voice down to a near whisper to say “…end-of-life care.” as if to protect Kathy from hearing. He told us about all the services we could be getting. There are home health aides that can come to help change Kathy. And volunteers that can come and sit with her, if I need to go out. Five days of respite in a nursing home. And grief counselling. Her meds will be delivered by Lewis & Clark Pharmacy and we can get whatever equipment we need from the same company, Agawam Medical. There is a chaplain if we want one. I asked if it was Catholic since Mercy was part of a Catholic hospital. No, the chaplain is totally non-denominational. Steve admitted he was an ex-Catholic like me. He left me with some information and said that a hospice nurse has to do the actual admitting. He wanted me to just think it over. It would be next week at the earliest.
I thought it over and told Kathy what was going on and she smiled and nodded ok and whispered “Sure”. I’m pretty certain she knows what’s going on. We have talked about it. The next day I called them up and said we were ready to start. The person at the office said she would check the nurses schedules. It would probably be Monday afternoon. That gave me the weekend to think and google different topics and think some more. I rushed out to do some grocery shopping at Aldi’s on Monday morning. While I was getting out of the car I received a call from a hospice nurse that there was a hold up. They need to make sure from Kathy’s doctor that her prognosis is “firm”: that she has less than six months.
My mind started making up scenarios: What if six months come. And go. Do I pay out-of-pocket? Do I turn off the food? What if she stays the same? Or gets more responsive? Or gets better.
(This was while trying to figure out whether to buy bran flakes and raisins. Or just raisin bran.)
It turns out that stuff happens all the time. They are always evaluating her status for Medicare certification. Occasionally patients start to do better with more care and less medication. They end up needing to discontinue hospice for a period. And go back on it later. The six month period can get renewed. That is what I am hoping for with Kathy.
The actual hospice services started Wednesday morning. A hospice nurse named Annie came over to begin the process. There was a lot of stuff to absorb: What they will provide. And what they won’t. It turned out the bit about the prognosis wasn’t necessarily six months exactly, but that it was considered end-stage Huntington’s Disease. I could have told them that. But then again I’m not a doctor.
Marty wanted to be a part of the discussion and it turned out Annie and her husband are thinking of getting a basset hound for their kids. Naturally I talked up the New England Basset Hound Rescue and gave her a business card for them. Marty decided that she would like to be butt humped by him. It was hump day, after all. He likes to back up to you and bang you with his tail until you pet him. When that fails he pushes his back-end against you and tries to knock you over. I am pretty sure it is a bad behavior but it is what it is.
I signed some forms. Filled out a list of names of Kathy’s family and phone numbers and doctors numbers in case information has to be shared. My name had to be on there too or they won’t talk to me. I gave her Kathy’s list of meds. She asked if I was out of anything since they provide all of that. I said that maybe the Propranolol, her blood pressure medicine. She said, “Oh we don’t cover that. You”ll need to get that with her insurance.” (I think because it is something that would prolong her life. Another example might be cholesterol lowering drugs.) She said that a “comfort Pack” of emergency meds would be delivered to us and a nurse would go over it later. And that the chaplain and the social worker, Steve are both required to visit at least once. There is no obligation to use them if we are not interested. And if we have enough health aides we don’t have to use their aides.
Annie was looking at some of the records and asked if it “was a he or a she?” I looked at her puzzled and said “Kathy?”
“No! Dr. Jackson!” It was good to end with a little hospice humor.
More to come soon.