A long overdue update: start of hospice care

Mid-June

As many of you have surmised, no news has (again) not been good news. Over the month of July the growing tumor progressively paralyzed Meg's left side and robbed her of hearing and sight on the left. She continued to adjust, with great grace and ingenuity, to her increasing disability, and managed to find ways to get up and down stairs, and around the house, with occasional stumbles and falls. By the middle of July she was having such difficulty with the stairs that we decided that she should live upstairs, sleeping and eating in our bedroom and using the guest room as a sitting room (our only bathroom is upstairs).

July 3rd picnic at friends' cottage

On July 16th she visited her lab (for the last time), to tie up some loose ends, with the gracious help of a graduate student. Helping her around was becoming more than I could cope with, so I enlisted the (long offered) help of Meg's brother, Gary, from Olympia. He arrived instantly and was invaluable to helping to get Meg to a doctor's appointment and an Avastin infusion on the 19th and to occupational and physical therapy appointments on the 20th, which taught us techniques to help her get around, and also fitted her for a wheelchair. Gary has been living with us during the week ever since, returning home at the weekends, and has been the most valuable helpmate that one could ever want. I could never describe all the caring things he does, nor adequately express my thanks for all his help and insights. He brought immense practical experience to our house, having cared for a disabled woman for several years.

TJ's finger-food is popular

The week of July 22nd to 27th saw another of our family merry-go-rounds with Nick, Elspeth and Meg's sister Caryn all visiting for overlapping periods (never more than 2 at once). A wheelchair and a commode were delivered and helped us to get Meg around, who was by then pretty immobile. Elspeth and Caryn helped bathe Meg in the shower, and found it to be very awkward, with her near total left-side paralysis, so I learnt the art of sponge baths!

The next week saw Gary and me taking Meg out for a doctor visit and an final Avastin infusion, made a bit easier with our own wheelchair and a handicapped parking permit, and we then had a couple of interviews with Providence Hospice of Seattle, and started using their home hospice service on August 8th. They've been helping us for a couple of weeks now, and their services and people have been universally as wonderful as we had heard they would be.

present bedroom arrangement

Meg now has a hospital bed, which (together with hospice staff's ongoing on-site training) makes life much more comfortable and safe for all of us. A nurse visits once a week, an aide comes to bathe and help Meg 3 times a week, and all sorts of supplies magically appear, as do medications (the latter by mail). We've had visits from social workers, who've gently started to prepare us for the times ahead, and we had an invaluable home visit from the superb Swedish Neurosciences social worker, who's helped us get all sorts of paperwork in order, and helped us start having difficult conversations about the future.

pills and breakfast

Thanks to all of this extra help Meg is much more comfortable, has rallied significantly, and has greatly enjoyed the two most recent visits from our children: Nick last weekend and Elspeth right now (till the 23rd). Nick, Elspeth and Caryn will do another of their family merry-go-rounds over the Labor Day weekend, so that might not be a great time for you to visit, but other times would! Meg sleeps a great deal, but greatly appreciates brief visits from well-wishers. Give me a call (206-660-3592) or an E-mail (tayles@jps.net) and we'll figure out a good day and time.

(finally, here are lots of recent pictures)