WHY WE DECIDED TO TAKE CARE OF TITIEN AT HOME – AND HOW IT IS DONE – BY TOBIAS

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.

24 Replies to “WHY WE DECIDED TO TAKE CARE OF TITIEN AT HOME – AND HOW IT IS DONE – BY TOBIAS”

  1. Hi Titien and Tobias,
    Thank you for writing again! I think it is good that Titien can stay home-being at home is always the most comfortable to be. I also think it is wonderful how you, Tobias, take care of your wife. She is a great woman and deserves all the love and care possible. God bless you two. Much love !

  2. It’s nice to hear Titien is taken care of at home by her most loved person and not by some strangers at an unfamiliar hospital. Much love to you both!

  3. Hi Titien, I just discovered your story from your Wechat moment. I still remember the time when we meet in a seminar at China, you are friendly and charming. Stay strong Titien!

  4. ahh gua bisa ngerti tulisannya tobias hahaha jiayouu tienn.. doa kita selalu ada buat u n tobias n ur family too.. 🌻

    lovee youuu

  5. Titien, so proud of you sis …
    When i wrote this comment, i’m flash back to our childhood in Hati Kudus ( still remember about those day ).
    Believe in GOD, HE will cure you and i never stop to pray for you and Tobias as your guardian angel.
    Keep up your spirit high and never stop remember about you beautiful days in the past titien…
    Jiayooo

  6. Tobias, we’ve never met.. Titien and I used to play in the same band about 14 years ago in Beijing.. When worked at the Embassy..

    Tien.. You are brave, you are strong.. All that you have written, all that you are going through inspires us to appreciate things more..

    Our prayers are with both of you. Stay strong.

    1. Oh I miss Beijing β™₯️πŸ₯°
      The band was fun πŸ˜‚.
      Thanks for your encouragement and remembering us in your prayers.
      All the best in life Pak Santo β™₯οΈπŸ‘πŸ€—
      Salam buat family ya β™₯️
      Love- T

  7. Dearest Titien and Tobias,

    Continued prayers and love sent your way, always.

    πŸ₯🐦🌺🌿🐀

    Lisa

    1. Thanks Lisa πŸ₯°πŸ¦†πŸ¦†πŸ¦†πŸ¦†πŸ¦†πŸ¦πŸ¦πŸ¦πŸ§πŸ§πŸ§πŸ˜˜πŸ€—πŸ₯°

  8. Stay Strong for Ce Titien n Tobias.. Tetep Semangat Ce.. karena semua akan terasa ringan ketika kita penuh dgn semangat setiap hari, setiap saat, setiap waktu.. tetap kuat didlm Tuhan, teruslah bersandar pada Tuhan.. Gbu πŸ™πŸ»

  9. Hi Ci, good to hear from you again in your website.
    Just curious, are you from Hati Kudus and/or Bunda Hati Kudus in West Jakarta?

    I graduated from HK/BHK, too.. πŸ™‚

    Regards,
    Cathy

  10. There is no place like home! πŸ˜πŸ‘πŸ¦†πŸŒΆ

    It is lovely that Titien can be cherished by you at home Tobias, in beloved and familiar surroundings. And of course the birds on the balcony are there and the Holgers from the sink! πŸ•ŠπŸŒ±πŸŒΆ

    What a wonderful place to be! Much love! πŸ€—

    πŸ’›πŸ’š

  11. Dear ,Titien and Tobins
    I look forward to seeing your post every day. I love you have for each other is beautiful and unique. The loving care you give to Titien, is beautiful πŸ’•. I pray for you both every morning and every night. I pray that our Lord and Savior continue to lavish upon you all of his love. I pray for peace for you. God bless you both. πŸ’•β€οΈπŸ’•β€οΈ

  12. Thank goodness you found each other. Your unconditional love is so special and I’m totally in awe of your outstanding commitment to each other as you share this long and arduous journey together so devotedly. Bless you both. So often in my thoughts….

    1. Yes, it’s an unconditional love β™₯️
      I am still in awe, I am beyond blessed.
      Thank you Jackie β™₯️πŸ₯°πŸ˜Š

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