What a day. A good day, of a sort, but a really difficult emotional day.
We've decided that a residential hospice is the right place for BF's mom.
After that great day she had two weeks ago, she's returned to the toxic, altered state that she was in previously, only now, her physical health has deteriorated even further. She was able to walk once she was helped to her feet then, but now she's completely wheelchair bound and BF can't even get her out of the wheel chair and into the bed. She's been at the skilled nursing facility where they've been attempting to get her some physical therapy for almost two weeks now and she hasn't made any progress, she's just getting worse. She's still refusing food, occasionally she'll take some juice, and her mental status has gone steeply down hill in just the last few days.
Last night BF talked to the doctor at the facility where she's staying. The doctor was basically calling him to let him know that his mother is failing to make any progress and because of that she can't stay at that facility any longer; there's no point to rehab if you're not going to make any progress and insurance won't pay for it. So this morning BF and I met with a nurse and a social worker from a local residential hospice.
It was one of the most difficult conversations I've ever had to have.
They tell you that you shouldn't think of it as giving up. That it's just changing our expectations of what the future holds, focusing on giving her the most comfortable, most peaceful final weeks that we can rather than prolonging treatment and extending what has become a painful, hopeless time. Part of me is able to see it that way. After all, it's what I would want for myself or my own parents. Another part of me feels like we're closing the book and that's heart-wrenching.
The hospice itself is a beautiful place. It's an old Victorian mansion that has been converted into a facility that houses up to eighteen patients in a very home like atmosphere. The living room is comfortably furnished, there is a nice big dining room, and several lounges. It doesn't feel the least bit institutional, it feels more like a boarding house. There is a four to one patient to nurse ratio around the clock and they have a doctor on staff as well. They have beautiful gardens and it's located in a nice, wooded area of Philadelphia. I know that this is the right thing to do for her, it's just also so very final.
By entering hospice, we are deciding that she will no longer receive blood transfusions, chemotherapy, or intravenous fluids. In fact she'll receive no care that aims to make her better at all - no antibiotics, no CPR, nothing. She'll die. The only medical care that they'll provide her will be with the aim of making her death as pain free, both physically and emotionally as possible. The provide antidepressants, general maintenance drugs, such as vitamin and mineral supplements, appetite stimulants if she's willing to try them, and morphine in various forms. The rest of her care will be in the form of counseling, music and art therapy, help with her personal hygiene, and any other support she wants or will accept. They will make her progress through the dying process and our part in that process as positive of an experience as it can possibly be.
Somehow it really hit home for me today. Whether it was the finality of the decision, seeing her struggle to get comfortable as she sat in her wheelchair, completely unable to reposition herself, seeing the nurse and social worker try to pull something out of her and getting nothing, visiting the hospice and seeing so many people so close to death, or all of the above, I'm not really sure, but by the time we started driving home I felt like I had been pummeled in the gut by someone quite large.
I tend to take a while to have things really settle in, to fully hit home. Always have. When my best friend died and the news came out of left field, I didn’t cry about it until I went to work the following morning and someone tried to talk to me about something that was just so normal that it seemed foreign. This month has felt very much like that first day. There have been so many ups and downs and uncertainties as to what lay ahead up until now that I don't even know if I could have felt the full impact of the blow. I was so unsure of how hard the impact really would be, of what I was really dealing with, of how to wrap my head around it. Today made the enormity of the impact totally clear and devastatingly real. I still don’t know how to react. I wanted to cry in the car coming home, but I want to be the one to lend support in this situation, I don’t want to be the one losing it and needing him to continue to keep it together in order to comfort me. There will be plenty of time for tears, now it no time to go breaking down. And I’m not a good crier anyway. After the first ten seconds or so I start thinking about how useless an act it is and how stupid I feel. I know I shouldn’t, that everyone cries and everyone needs to, but I’m also a bit of a control freak, especially when it comes to having a firm grip on my emotions.
Then to add to the pressure of the day, we were uncertain as to whether or not we could afford for her to stay at the hospice. In addition to their fees for the care itself, which insurance companies cover, there is an additional and not insubstantial daily rate for room and board. We could cover it for a time, but not for long, and the last thing we'd want would be for her to have to move out in the last days or weeks of her life, or to have to go into massive amounts of debt to cover her end of life expenses, after all, we still have funerary expenses to pay for and any other out of pocket expenses, such as co-pays and durable medical equipment. So our silver lining today was a call from the business director at the hospice telling us that not only had our fabulous social worker already arranged all of the paperwork necessary for BF's mom's admittance to the facility, but that her health insurance will cover her stay in full since she is under sixty-five and that all of that paper work had also been taken care of.
Now we have a day or two of down time until she is released from the rehab facility, at which time she will be taken directly to the hospice house. They have a shared room for her to stay in right now, but as soon as one opens up, she's going to be moved into a private room where we and the other people that loved her and have been touched by her life can share in her final days.
It was an awful day and a positive step forward at the same time. We've been released from the uncertainty of the last month and a half and now will enter a less hopeful, but more solemn, peaceful, and certain stage in this grieving process.
It was an especially good day to meet with my new therapist for the first time. She has specialized experience in dealing with chronic illness and grieving, so it was a big relief to see her shortly after we came home from the hospice. I’m hopeful that she’ll be able to help me to navigate this difficult time and the difficult times that will be coming over the next few months.