Titien and I are both writing about how we deal with her illness. Especially now that she is getting worse and worse, we get a lot of encouragement, good wishes, offers of help and suggestions on how we could better organize her care.
First of all, the most important thing: Both Titien and I are happy about Likes and when our articles on social media are commented on and shared, and we are very happy about comments under articles in our respective blogs. Thank you very much for this and please keep it up!
We get a visit from the “Bridge Sisters” every week. This is an oncological palliative care service in Karlsruhe, which is supported by the big hospitals of the city. We would also have the possibility to use a private nursing service. If necessary, our family doctor comes by and looks after Titien. Of course there are also nursing homes and hospices in Karlsruhe that are equipped for palliative care.
However, I am in the privileged position to be able to care for Titien here at home. On the one hand, we have a suitable infrastructure here: Our apartment is handicapped accessible with a wide corridor, sufficiently large rooms, no stairs and low door steps. We have an elevator and can leave the house with her in a wheelchair at ground level. My car can also be reached directly by the elevator in the underground car park. We are also equipped with a nursing bed with electrically adjustable head and foot section, with a wheelchair, a toilet chair, a walker and a shower lift.
Furthermore, the physical requirements for care at home are met: I am tall and strong. Titien is small and petite. Even with heavy water retention caused by the cortisone, she still weighs less than sixty kilograms. She often refuses to believe this herself and orders jogging pants in size XL, which I then have to exchange for size M – and even they still fit comfortably. I can carry Titien from bed to toilet chair, shower, sofa, wheelchair and back on my own. Even if she accidentally drops on the floor, as happened yesterday morning in the bathroom, I can simply pick her up and put her back in the wheelchair.
Thirdly, the other basic conditions are ideal: I have an understanding employer who allows me to work flexibly from home during this time. We have a caring circle of friends who are always available for listening and buying groceries for us if needed. I also already have experience in caring for relatives. I accompanied my mother for her last 15 months before she died of pancreatic cancer in 2016.
But the last point is the most important one: it is both our expressed wish that I care for her and that she be cared for here at home for as long as possible. Titien has even put this in writing in her living will.
Titien often has another wish: she does not want to see anyone else. Thus, we canceled the music therapist who wanted to take Titien on a “sound journey”. And we don’t call a physiotherapist home to give me a massage on my back.
This also means that we very rarely invite friends to our home. Titien often just wants her peace and quiet. Thank you all for respecting that.