Halloween

Continuing on in the "settling in" process. Not too much comfort again today. Mom seems to be able to achieve comfort for 5-10 minutes at a time unless she's fortunate enough to fall asleep which does still last for several hours. For the time that she's awake, it seems that just in the last few days, since we arrived home, she's needing to be more and more upright. She's less and less able to tolerate any degree of recline at all before she struggles with her breath. I occasionally attempt to approach the subject of medications that could ease her struggle for breath, but she won't hear anything of it right now. Often when I raise the head of her hospital bed for her, she is still not comfortable even when it's all the way up. The hospice nurse made her first regular visit today. Mom's lungs are "clear but diminished at the bases", and her oxygenation saturation level is 92-93%... which is good. When the nurse got here and told Mom how sorry she was to hear about the loss of her husband, Mom burst into tears. I can't even imagine being trapped in there with no way to talk about her grief, but at the same time I'm reluctant to bring it up to her often because I don't like to upset her. Not sure how to handle that one, maybe there's nothing I can do. Annie's on her way driving with the dogs, stopping over in Virginia tonight and arriving tomorrow morning, staying until Tuesday. (She'll be here to help me interview Mercy on Monday morning). Adam and Chris will visit tomorrow until Sunday. Mom's Lazy Boy arrived this morning, she was anxious to sit in it, but again, needed to continuously be scooted up in the chair to feel like she was upright far enough. Not as much comfort there as we had hoped for. Tomorrow's another day. Mom will be glad to see her doggies and the rest of her family. She stayed today with a friend of mine, Tita, who is a caregiver I've worked with in the past. Tita stayed with Mom while I went to see Molly's school's Halloween parade and take her trick-or-treating around town for a couple hours. Tita took good care (much better than JOY!) but was still frustrated at how difficult it is to communicate (probably not as frustrated as Mom!). Lesson for today was that while I can't always fix the particular thing that might be bothering Mom, her particular discomfort at that moment, I do seem to be able to find other ways to make her feel better... by massaging her shoulders or stretching her arms or putting on some music. Sometimes we have to step away from the frustration of the moment and chalk it up to "I can't understand what you need right now", and move into another direction and just focus on what we CAN understand and what we CAN affect.

Comfort Measures

Hhhmmm, "comfort measures". Such an interesting thing to consider. Having opted for comfort measures, you could almost be fooled into thinking that then there will be comfort. Today's lesson is that sometimes the best I can do is say "I'm so sorry that I can't make this better for you". This is a God-awful disease. No comfort today. Mom's legs are causing her trouble and seem to be in spasm much like her arms have been, maybe has to do with the fact that she's been in the bed and isn't able to change positions. Tried every different chair in my home, finally ordered another Lazy Boy just like the one she had at home. Will come tomorrow morning.

Day 2 - Heartbreak #6742

Well, our first hired caregiver spent the night with us last night... "JOY" was her name. However, Mom let me know for certain this morning that "JOY" was NOT aptly named! She apparently did not possess that crucial special something that is needed in this situation. My heart broke in two to think that Mom had an unpleasant night in her care, but I guess it's all a learning process. Finding the right person to give Mom the right care is going to be pretty tricky. (So, note to all you local NJ folks... come visit often!) It's just going to be me for a while till we find the right live-in person. It's too arduous to think of continuing to interview and teach and train people who are only going to be here for 12 hours. Anyway, I spoke this morning to "MERCY" (what's with these names?) who definitely left me with a warmer feeling overall... she's available to live-in starting on Monday... she just wanted to know if she could cook her African food in our home! I initially thought "of course, there's no problem with that"... and was then informed that that includes hooves and tails and tongues and all kinds of animal parts that my kitchen is not accustomed to! We'll see. At least I was able to sleep myself last night and am able to attend to Mom better myself today.

Funny thing... one of the things that Mom needs frequently is her feet spread apart. If she's lying in the bed, her legs tend to fall together and that bothers her. Practially every one of the health professionals who visited us yesterday recommended a wedge or a pillow to be placed between her legs to keep them comfortable apart. Mom doesn't want anything like that since she can't adjust it herself, she doesn't want anything extra touching her. HOWEVER, we decided this morning that my little orange kitty makes for a perfect wedge, doesn't bother her and actually brings a smile to her face! At one point when I was holding him near her, he rubbed his face up against her badly contracted hand and she let out a little laugh. Isn't that such a wonderful feeling when animals come and rub against you like that for affection? He has made himself quite comfortable on her blanket positioned between her lower legs and has been lying there a while. She does love the animals so much and is looking forward to Annie coming this weekend with her two doggies.

That's about it for now. Busy looking online for an appropriate recliner chair that Mom can sit in comfortably so I can offer her something better than this hospital bed. Giovanna, the home health aide from the hospice agency is coming at 1pm to help with a sponge bath. Bought a special tray to hook onto the back of the bed so we can give Mom's hair a wash. More later.

Move to NJ

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.