Hi Everybody. Just thought it might be a good idea to start jotting down some happenings, hopefully on a daily basis, so you can all know how it's going with our Mom. Yesterday was one week since Dave died suddenly at home. Annie, Adam, Mary and I spent the week trying to sort through this tragedy and what it would mean for Mom. After a week of carefully considering all options, since Mom requires total, round-the-clock care, we decided that it would be best for her to move home with me to New Jersey. I've stopped working and will be able to be home with her all the time. She was most agreeable to this plan as long as we could bring her two Chow's with her! The plan is for Annie to drive up to NJ on Friday with the dogs and all their stuff.
Yesterday, was our travel day, a long one, but we arrived safely back at my home around 11pm. My dining room has been converted to Mom's room so that she can be on the first floor. It has doors that close it off to the kitchen and to the foyer. We arranged ahead of time for her bed and everything she'd need, and Phil did a great job of setting it all up so we could just get home and go to sleep. Mom's bottom is pretty sore since she's in the same position most of the time, so she's sleeping on a special mattress that moves air around underneath her all the time. This is probably the most pressing source of discomfort for today. Her arms are also pretty badly contracted so we're working to stretch them a few times a day, with the help of some special braces that she wears for 30-45 minutes at a time on each arm. She has begun to struggle with her breath and has to pretty much remain upright in order to be comfortable.
Today was a very long day... we'll chalk it up to a "settling in" day. Mom has agreed to accept hospice care so we first had to find her a NJ doctor that would assume her care. He came today and made a very caring housecall, his name is Dr. Joseph Lutz and he was recommended to us by my VNA. He agreed with our hospice choice and we signed all the paperwork. Best thing I can tell about him is that he always answers his cell phone for patients! Isn't that amazing? The doctor spoke pretty frankly to Mom about her choice for hospice care and spoke frankly about what we can expect as her condition declines. She is truly the most amazing and strongest woman I've ever known, she looked him in the eye and made her choices very clear, she doesn't want any invasive help at all. We can tell it's going to be a fine line between keeping her comfortable and honoring her choices for NO help. But for now, we're just going to walk through a day at a time and cross each bridge as we get there.
Next was a visit from the nurse at the home health agency. They're the ones helping us to identify and place a home help person who can potentially live-in at my home and help us full time take care of Mom. The doctor also agreed with this plan since Mom's care is so heavy and constant. We've started with that interview process, which I imagine will take some time. Next was the visit from the hospice nurse (from my own agency) who is going to arrange for a nurse to visit a couple times per week, an additional home health aide to visit a few hours each day, and a VOLUNTEER massage therapist who will come once per week. Mom was glad to hear about this service as her arms and shoulders are especially tense and tight all the time. The agency will also provide us with a kit of medication which is designed to help us handle any unpleasant symptoms that may arise.
When Mom was in her home, she was in the habit of sleeping in her hospital bed during the night and then spending most of the day in her reclining chair (which she had painstakingly picked out herself some months before). My hope had been to duplicate that set-up with a recliner of my own so that Mom would have a place to sit and watch TV during the day. Unfortunately, we have not yet found a place for her to be comfortable like that. Today she spent most of the day in her bed, which was probably just as well since she spent a record-number of hours sleeping soundly. I think the travel day and all of this change probably wiped her out. We'll be working hard to create as many comfortable options for her as we can. Annie may wind up bringing the chair with her this weekend so Mom has it here.
Everything else is pretty much the same for her. We brought all of her important things with us, including family pictures and things that she was used to having at home. She's not taking in anything by mouth anymore, but is being fed through her gastrostomy tube 4 times per day. My 6 year old Molly has even taken to this process and likes to help out with the water flushes. She also likes to soothe her Nonny by rubbing her with Honey bear. (I had to gently explain to Molly that although Honey bear has always been soothing to Molly, that Nonny is well aware of the bacterial load carried on this bear, and that she probably does NOT want him rubbed on her skin!)
Tonight we are having our first experience with an overnight caregiver, named Joy. She's very nice... but I wish I had known off the bat (not sure why I DIDN'T know off the bat!) that she's allergic to cats and dogs! Um, not an ideal fit in this situation! Which is really a drag, because when she arrived, it started to dawn on me just how much there is to teach someone who will be caring for Mom. Joy has had lots of experience caring for lots of people but never someone who was non-verbal AND alert/oriented. Most people who can't talk don't know and don't care! Whole different story! But obviously, the person who will ultimately be able to help us will be extremely patient and compassionate, intuitive and loving.... able to pick up on all the non-verbal cues that we all have to read to be able to communicate with Mom.
So, that's probably enough for now. I'm hoping to write with an update every day. Because I've been in your shoes, separated from this amazing woman by distance, I know how important these details of daily life can be. I always felt that it someone helped to ease my longing to be closer if I could know just a couple intimate details of how things were going. Please feel free to share as you like. I'll pass along whatever sentiments I can to Mom. Also, here is my address, feel free to keep in touch that way: Laura Lovell, c/o Jessica Sibona, 27 Symor Drive, Morristown, NJ 07960. Good night.
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