End of Weekend, 11/9

Here is a picture of Mom with my daughter, Chloe, and Adam's son, Christopher, in 2006 when we all vacationed in Italy. So sorry to have not written all weekend. It was a very full weekend, full of lots of love and family and support and help... and of course... tears. My Dad and Mary arrived Friday afternoon and we feasted on some of Irm's casseroles! (Thank you, thank you, thank you!... in fact, while we were eating, my dear friend, Irm, showed up at the door with yet another tasty dish! What a wonderful thing!) Aunt Martha came for a visit Saturday morning and was here while Phil and Molly went to her last soccer game. Mom also got a visit Saturday afternoon from her college friends, Diane and George, who drove from Pennsylvania. I remember seeing pictures of Diane in Mom's wedding album... and Diane brought a picture of her wedding where Mom and Mary were both bridesmaids! They stayed a while and had a nice visit. Mom seemed very content to sit in the middle of her college buddies. She napped on and off as she needed to and finally after a few hours asked to retire to the bedroom, she had lots of tears as they were leaving, but we just reminded her how much people love her. Adam and Ladylove were here on Saturday too and only just left an hour ago on Sunday evening. Mom got lots of pampering and record-number of arm-stretches! Adam and Phil carried her to the 2nd floor so she could have a proper shower which I think she appreciated. We figured we'd do this every weekend when Adam is visiting, Mercy will keep doing morning sponge bathing and I'll keep washing her hair once or twice during the week. Everything is going well with Mercy... a few bumps along the way... mostly to do with the doggies, but we're working to smooth it all out. Mercy let us know that she couldn't hack it with the dogs sleeping in the room with them. They were jumping on her bed while she was sleeping so they could see out the window and chewing on their feet NOISILY during the night. We promised Mercy that we would fix the problem, and we promptly went about trying to resettle the dogs into the kitchen to sleep. Since they were having so much trouble relaxing in there last night, we decided to make use of some "Rescue Remedy" which is a holistic "anti-anxiety" remedy found in our local health food store, safe for people and animals (FUN FOR THE WHOLE FAMILY!) to help them calm down. Not sure yet how well it's working but we'll keep trying to "normalize" it all for them. They've had some good walks in the woods this weekend and I'm hoping now that my kids are back to school this week, I can try to get them in a routine where we walk every day. My Daisy, on the other hand... back to the vet tomorrow with her oozing wound and abcess under her tail. She's still on the antibiotics, but the vet may need to place a drain or two to help her wounds to drain properly. She just keeps licking the one... which IS, after all, what dogs do... but is probably contributing to its constant drainage and bleeding.

Mom's been asking for the Ativan pretty regularly and I'm certain it's helping her to be able to relax and get some rest. She and Mercy get on well, Mercy is finding nice, gentle ways of communicating with Mom and we often catch her singing softly. And then when she's in her basement room by herself and we're all upstairs... she is NOT singing softly... she is down there totally getting it on with her Ghana-self! She's singing and carrying on and sounding like she's just having a blast! It's fun to listen to and is a testament to her fun-loving nature. So hopefully tomorrow can be the beginning of a nice stretch of some routine time. Annie is planning on visiting next weekend. Tomorrow (Monday) will be her first day back at school... she attempted to return last Wednesday but it proved to be too soon. She and Eric have been busy ripping up carpeting at Mom and Dave's house which will need to be replaced before they can move in there. I look forward to my Sister's visit, and I'm sure Mom does too. Thank you all for reading and contributing. I'll try to get back to writing every day, even though sometimes it feels as if there isn't that much different to report.

A Little Sunshine - 11/6

I've been feeling a little uncomfortable about giving Mom the Ativan at night, mostly because I'm not really clear how she feels about it. Something doesn't feel quite right about giving medication to someone who can't easily protest. I gave it to her again this morning, first time she's had it during the day, and while she seemed agreeable, I just haven't been completely sure. So tonight, she started to have increased restlessness again and Mercy and I were both having trouble helping her to relax. I asked her outright if she wanted me to give her some more medication to help her calm down and she almost gave a little laugh of relief.... which really surprised me but also relieved me! It was the first real true sign that she is willing to accept some "better living through chemistry"! It opened up the discussion about the use of this medication... I asked her if she wanted me to offer it to her more often, and she gave me a clear "yes". I told her she can have it every 4 hours if she feels she needs it, even though it doesn't right now seem that she needs it that often. Anyway, I gave it to her and it really works like magic for her. It's the only time that we're able to view a little Laura sunshine, the only time we can get past the ever-present distress. We even had a little joke about this constant spreading of her feet (it's one of those things that often keeps her awake at night, whoever is sleeping with her has to get up numerous times during the night to spread her feet apart so they're not touching)... anyway, I made a joke about how I thought there must be magnets in her feet and that's what keeps pulling them together. It must have struck her funny because she actually had a little happiness and laughter over the magnetic feet! It just warmed my heart. I wrote yesterday about how FUN my Mom is and how much she has always liked to laugh. That's the kind of thing that always made her laugh, just the silly stuff. It was nice to be able to see that little bit of her come through.

The rest of the day was quiet. Mercy is in the habit of giving a sponge bath in the morning but doesn't wash Mom's hair, which is quite long and silver and beautiful these days. So today I did the hair washing with the hanging bag system and the draining head tray. Worked OK. We also did lots of arm work and she wore her arm braces a few times... they're designed to help prevent further contractures in her arms. Starting next week, the hospice agency is providing a weekly volunteer massage therapist as well as a volunteer who is certified in "healing touch" work. Don't know much about that but it's a special kind of light touch designed to stimulate healing energy and bring about relaxation. Mom said she's open to try it. Mostly, I think just the extra hour of relaxation time will be good for her. Lots of family coming this weekend... my Dad and Mary as well as Adam and Ladylove. Mercy spent lots of time today preparing her food ahead of time...her Ghana cooking is quite interesting and usually smells delicious. Phil and I heard Mercy singing to Mom tonight as she was getting her into bed. We thank God for Mercy.

Wed, 11/5

Everything is going mostly smoothly at home these last 2 days. Mercy is taking good care of Mom. The lifting is quite intense for her and she seems to have aggravated an old back injury. I think tomorrow we may start using our new hoyer lift which is a hydraulic lifting device for just this kind of situation. We can probably use it for lifting back and forth to the commode and in and out of bed/wheelchair. But all in all, Mercy is very patient and caring and has good intuition about Mom and what she needs. She's gotten the feeding down and has learned all the little tricks to positioning Mom comfortably. We seem to be working well together, when she has a bad night with Mom, I'm around during the day to relieve her so she can get some rest. Then she's around later in the day when I need to be helping the kids and shuffling the dogs around between rooms and in and out of gates! Molly accidentally let Daisy into the kitchen tonight when Mom's dogs were there, there was another bad fight and Daisy got bitten on her opposite hind leg. I was thinking to keep her home until her antibiotics were finished, but I may wind up having to ask my neighbor friends to take her, medication and all. Mom's dogs actually fought with each other today which I've never seen before. I'm afraid Cubby got a good mouthful of Blackie's ear and they were full-on growling at each other. I'm sure they're pretty turned around about where they are and what they're doing here!

Mom seems to be doing OK, just not very able to get comfortable for very long at all. Right now it seems very hard to tell the difference between when she's saying "yes" and when she's saying "no". Sometimes I have to ask her again and again and I'm trying so hard to read her face but still can't tell which she's saying. Then when I ask too many times and she gets too frustrated, she winds up yelling her answer... which must feel to her like she's really TELLING me but I STILL can't understand! It's just all frustration, all the time. Alot of people have asked if we've tried a "blinking system" where she blinks once for yes and twice for no, but she really doesn't have the focus to do that. Her eyes are so WIDE and scared-looking all the time, I don't think she could do the blinks. Plus, mostly I think she doesn't want a "system". She wants to just be able to communicate! Sometimes I hold up my right hand for "yes" and left hand for "no" and ask her to look at one or the other. It's pretty easy to follow her eye movements, but more frequently, she seems to be getting confused about which hand is which or she'll look from hand to hand, like she's having a little trouble making sense of the command. I don't know. Can you imagine not being able to communicate even yes or no to the most simple questions all aimed at achieving bodily comfort? It's just the most frustrating thing I could ever think could happen to somebody. My Mom has just always been the most giving person... so giving of herself in such a patient and selfless way. She was always so fun to vacation with because she would just go along with whatever everybody was doing. She always just went along, that's how she was. In the middle of a big group of people all trying to decide which way to go, what vacation activities to partake in... she was NEVER controlling or demanding or selfish, she just went along with whatever everybody else decided, whatever sounded fun. In January when we vacationed in Hawaii... even though she was sick and not getting around well, she did everything! She went kayaking down a river to the Pacific Ocean, she went riding on an ATV through the red dirt of Kauai, and she put her sneakers on and walked to the beach every day. She went up and down the stairs from one floor of our house to another without complaint and at the end of the day she sipped her glass of wine while relaxing in the hot tub. She was always just so happy to be with everybody, she was happy just that we all got together and got silly and made her laugh. She was always happy to just be in the mix... laughing and being silly. When it feels like the most frustrating thing in the world that she is in this condition, we just try to remember her that way. She would NEVER want to be demanding, she would HATE that she has to be this way. You can still look deep into her blue eyes, you can still see her in there, full of love and laughter.

Monday, 11/3 - Have Mercy On Us!

Mercy, our new live-in caregiver, arrived around 10am this morning. So far so good. She's from Ghana where she has 3 daughters attending university. She works here so she can send her money home for them, and she goes home to visit every 2 years for 1 month. She has a big, bright, wide-open face and she, so far, seems very warm and very, very compassionate. She's actually been overwhelmed with emotion a couple times over Mom and her difficulty communicating. I have great hope that she will be a good person to help us care for Mom. Mom seems to really like her, makes good eye contact with her and has not had any problem with any of her care so far. Aside from having the help caring for Mom, one of the best things about her being here is that I can step away for a while and come back in with a fresh face and smile for Mom rather than just being all work and tasks for her.

Annie left a little after 1pm today and was planning on driving straight through, 13 hours, back to South Carolina. My thoughts are with you, My Sister, as you return home to this emptiness. Looking forward to your next visit over Thanksgiving. Before Annie left today, Mom was trying to write something over and over again on her whiteboard. We could tell that it was something that Mom desperately wanted Annie to bring back with her next time she comes up from SC. We finally identified that Mom was asking Annie to bring her walker with her. It's been several months since Mom has been able to walk with her walker. I hope that it's an indication that she's feeling hopeful and optimistic and well. There's really no point in her feeling any other way. I asked her if she was visualizing that she would be able to walk with it once Annie brings it back up and she said "yes". Annie and I both just said "OK, let's bring it!" What we wouldn't give to help Mom have her legs and her strength again. She loved to walk barefoot in the sand after a long jog or walk on the boardwalk in the summertime.

Took Daisy to the vet for her bite wound. She's on 10 days of antibiotics and some doggie pain-killers! She's definitely not herself today, and it's obvious she can't quite figure out why her nice little world has turned so completely upsidedown... but HEY, join the club!!! I think she'll stay home with us until she's over the injury then will go stay with our friends for as long as Mom's dogs are here. Not much else to report today. Mom had some Ativan again tonight to help quell the 8pm "witching hour"... seems to be a tough time of night for her, tough to quiet her mind and relax for the night's sleep. My Dad and Mary are coming to visit this weekend along with Adam and his ladylove, Sidra. Good Night, All.

Sunday - 11/2

Mom's doggies are here to stay, Mom's Cubby and my Daisy had an altercation today. They haven't been getting along and have been mostly separated in the house, but I guess we took our eyes off them today and Cubby got a good tooth-grip on Daisy's side. Daisy will definitely have to go stay with our neighbors for the time being. The cats, not sure yet. They may be wise enough to make themselves scarce. Time will tell. We've decided to keep the dogs here until Thanksgiving when Annie will be visiting again. By that time we should be settled in and should be better able to tell how it's all going. Most important thing is that it's Mom's wish to have her dogs around her. Adam and Annie and I spent the day tending to Mom. Annie and I visited the specialty surgical supply store in search of the right bed-bath accessories... found a 2.5 gallon bag that hangs over the bed and has a sprayer thing that helps you bathe somebody in the bed. We'll try it out tomorrow. Mom was mostly pretty discontented today, difficulty getting comfortable, more discomfort in her legs, wants her arms stretched out constantly. Annie and I finally decided to encourage Mom tonight to take something to help her relax. She's been very reluctant all along to take any medication, especially something that might alter her mood, but she is SO tense and SO agitated so much of the time that we were in agreement that she couldn't go on like this. She was agreeable to a small amount of Ativan which, so far tonight, seems to be helping to take the edge off. Hopefully she'll have a better night's sleep tonight than last night. Interesting segment on 60 minuts about a man with ALS who was trialing a device where you wear a ski-cap of sorts with a bunch of electrodes attached to it, and by simply thinking of a word, the word appeared on a computer screen. It was really amazing, will have to look at it more closely online tomorrow. It's specifically for people who are non-verbal, it can read your brain activity and translate it onto the computer where it can be read. Amazing concept. More tomorrow. Thank you all for following and for your comments and wishes. Please keep the support coming.

Saturday, 11/1 - Lots of Family Love

It's amazing how much more comfortable Mom is when there are plenty of us to go around. Many thanks to Aunt Martha who showed up first thing this morning and stayed while Phil and I went to Molly's soccer game. She gave Mom a great shoulder and neck massage that helped Mom to actually doze off in her chair. Chair has been great, Mom spent most of the day in it today, it totally enabled her to be out in the middle of the family rather than stuck in her room. A little more comfort today than yesterday. Annie arrived with the doggies around mid-day and much of the day has been trying to sort out the animals! Mom's two chows, Cubby and Blackie, got all shaved and groomed for the trip... but even in all of their groomed splendor, I think they probably won't get along with my Daisy. We're trying it out with some gates in an attempt to keep them away from each other but it's still a bit logistically challenging right now. My two kitties are a whole different story. I think they're better off just moving out lest they risk becoming somebody's lunch! Mom is definitely happy to have her dogs around her and that's what's important, her face totally lit up when she saw them. If we can help her have that wonderful comfort of home at this time, the rest can certainly be worked out. (Probably won't see much of Phil, however, without a vacuum in his hand!) Adam and Chris arrived shortly after Annie and Mom has been very well tended all day by her three kids. I find it much easier to have laughter and keep the mood light when Adam and Annie and I are working together. We're able to kind of have fun conversation around Mom... conversation that isn't so easy when it's just the two of us. That seems to help her feel lighter and maybe concentrate a little less on her discomfort. Many many mucho thanks to my good friend, Irm... whose mother I cared for in her final hours... who brought over MANY home-cooked casseroles and dishes to serve many people, along with a beautiful larger TV for Mom to have in her room. It has a VCR built in to the bottom and Irm and her husband put together a huge tub of VHS videos for Mom to choose from. That's a great comfort because the TV that I had put in there previously I think was too small for her to see very well. All little steps toward creating a comfortable environment. Annie had a good talk with Mom about some serious stuff during which Mom expressed to Annie that she would rather Annie and her fiance move in to Mom and Dave's house rather than put it on the market. Annie's going to sell her townhouse and live in Mom's house for the time being until the market is more favorable for the sale of it. Annie's doing an absolute beautiful and totally grown-up job of sorting through all of the financial affairs and making wonderful decisions about how to best manage everything. She's surrounding herself with all the right people to help her and, despite her own time of grief, is showing tremendous courage as she pushes on with all of the responsibilities that have landed on her shoulders. I feel very blessed today to have the love and support of my brother and sister, and feel honored to be caring together for our mother.

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.