Daughter beginning Hospice

All,

A lot has happened since I last posted.  Except for a 3-week stay in a skilled nursing facility (SNF) recovering from a blood infection, DD has been on hospice.  Then, with their help, we cared for her at home, but it became increasingly difficult, since she cannot stand or walk at all.  We had to lift her every time she wanted to move.  And she wanted to 'go' all the time--then wanted to come home just as urgently.  She was trying so hard to be normal that it wore on all of us--her kids included.  The hospice social worker and nurse both recommended the SNF to give us and the kids a break.  On August 4 we put her in a SNF while we took the kids camping for a week.  While away, we realized how exhausted we all were, and how much a toll her care was taking on us and the kids.  So, with the full support and recommendation of hospice, we made the difficult decision to keep her in the SNF.  She was very angry at first, but slowly she is adjusting.  She is about a 7-minute drive away, and about 3 minutes from our church, so she gets lots of visitors.  We visit twice a day.  The kids visit a few times a week, but it's very hard on them.  I always invite them to go, but they often decline.  Today eight of us (including the 3 kids) enjoyed a picnic lunch with her on the shaded lawn behine the SNF.  She really enjoyed that.  

DD hasn't had a voice for several months.  She can only whisper, and it's getting increasingly difficult to understand her.  She tries to write notes, but they are often illegible.  She struggles for the right words, but often they elude her. She is often confused. When she wants something, she persists until she gets it, or until we can convince her that it's not doable--or in her best interest.

Today she got a reclining wheelchair to replace her upright chair, so our walks around the neighborhood will be more comfortable for her.  We took our first walk with it this evening, and she really seemed to enjoy it.

I can't help but feel guilty that we've turned most of her care over to professionals, but the hospice social worker and nurse both assure us that we're doing the right thing.   The SNFstaff are very attentive and caring.  We certainly haven't abandoned her, but we have to balance caring for her with providing a healthy and nurturing environment for her kids.  We're doing the best we can.

Thanks all, for your supportive comments.   Rob, I especially apprciate your encouragment, given that you and your children have just lost your precious wife and mother. 

The hospice social worker told me that if I ever feel guilty, I should give her a call.   We try to visit twice a day, but DD is deteriorating rapidly now, and there is very little communication.  Yesterday was a pretty good day.  We took a long walk outside, then she wanted to play Bingo with the other patients.  We played, but she had a hard time following.  Sometimes she'd get a number, but more often I had to point it out or cover the number for her.  But she seemed to enjoy the diversion.

Today we took her for another long walk in her reclining stroller, but she didn't seem to enjoy it as much as she did yesterday--even though her kids were with us today.  Tonight I stopped by and just sat and stroked her hair while she slept.  Her nurse came and woke her up to give her her meds, and she tried to talk to me.  It didn't make sense, so she wrote it out.  It still didn't make sense.  Finally, she just wrote, "Thanks, bless you all all" and signed her name.

The kids can hug and kiss their mom, but that's about all the communication they have with her now.  She just stares most of the time, and rarely smiles--even when her kids enter the room.  I think that's part of the dying process--to turn inward and sort of shut out everyone.  

Just a note to update you all and thank you for your love and encouragement.  Our daughter, Jennifer Anthony, died the morning of August 27.  She leaves three precious children.  We are all doing okay.  We're planning a celebration of her life in a couple weeks, and her 13-year-old daughter is going to sing--because she promised her mom she would.  Jennifer wanted a party, so that's what we're going to give her. 

We celebrated Jennifers life on Friday, Sept 18.  Her 13-year old daughter sang, and it was beautiful.  She smiled confidently and sang like an angel.  I dont think there was a dry eye.  Our niece and music minister also sang beautifully, and our neighbor helped us put together a very nice slide presentation of Jens life.  Several pastors and her younger sis gave beautiful eulogies.  Then we adjourned to the party.  Two thirds of the tables (for 300) were adorned with tulips (3 yellow and one red or 3 red and one yellow), representing Jen and her 3 children.  Jen was a collector of all things penguin, so about a third of the tables were adorned with Jens stuffed penguins, to which were tied 4 red and yellow balloons.  It was very festive and fun.  We had a great collection of photos which we projected on a big screen during the lunch, which was catered by our church.  It was wonderful and uplifting and, I think, exactly what Jennifer wanted.