Merry Christmas Everyone!

So, it's been a long time since I have written in the blog, and several factors have come together to spur me on. First, the world should be ending today according to the Mayan calender. Secondly, it's the first day of winter and we got a dusting of snow on the ground! Thirdly, I've been noticing that Shirley is showing signs of decline after a long period of plateau. She is sleeping more and eating less. She seems to be spending a lot of time "introspecting", which I understand is normal for people with this disease. 
 

In my last post, I mentioned that Hospice might be called in, and indeed I went ahead and chose a team to help with Shirley's care. Kim visits Shirley often and helps with an extra shower every week. Tracy is the nurse who not only makes regular visits, but is a strong advocate for mom's comfort care. Mark is the pastor who reads the Bible and prays with her each week. There are many others on the team too, including volunteers who will visit and hold mom's hand and talk with her. I'm so grateful to them all.
 

There is another person I'm very grateful to as well. Shortly after my last post, I met a wonderful man who has become the light of my life. We have come to love one another in a way I've never experienced before. Michael and I will be partners for life. Not only does he love me (and Butterball too), he loves Shirley so much. From the very first time he visited the Care Center with me, it was obvious that he and Shirley connected on a whole other level. She LOVES to see him come into the room. He brings her flowers, helps with her lunch, holds her hand and talks with her, makes her smile, doesn't shy away from wiping her nose or getting her to the toilet or any of the other tasks necessary for mom's comfort. Mike is definitely a keeper. I'd be lost without his love and support.
 

I'm going to bring this to a close with one more thank you - this to one of mom's former students at MASH. I came home from the Care Center yesterday to find a Christmas card in the mailbox addressed to Shirley. I opened it to find a lovely message from Stephen, who wrote that he thinks of mom often. He included a phone number and I called to thank him. We chatted for quite a while, and it was wonderful to hear him reminisce about the times he spent with Shirley in her office and how she helped guide him through some rough spots in high school. So thank you Stephen for shining yet another bright light into Shirley's - and my - life. I'll be taking that card in to her soon. Merry Christmas everyone.

Off the meds

Joy and sorrow all at once. About 12 days ago, after many conversations with Shirley's nurses and doctors, and after talking with the brothers, we decided to take her off her Namenda and her "apetite boost". She had been unresponsive for so long that the consensus was that the meds were not helping her anymore. Upon making the decision, I was counseled by the staff that I should expect mom to decline rapidly - in fact, I should probably start interviewing some Hospice teams. Lots of tears and guilt and more of both kicked in. Was this the right thing to do? Who knew? Who could tell me? Anyway, it was done and I sent a short email to a few of her colleagues/friends to let them know what was happening. One of the friends made immediate plans with me to visit Shirley. The others sent email saying that they were not able to handle seeing Shirley in her declining state and that they wanted to "remember her in her good days."

So here's the kicker. Shirley, instead of declining, suddenly became alive again. She almost immediately began to sleep less, to speak more, to continue to eat with good appetite, and to bear more weight when we moved her from place to place. She is communicating in sentences and making sense more often than not. She has hollered at me for bumping her footrests when we roll around the halls in her wheelchair. Where before she couldn't use her hands much, she is now holding some finger foods, scratching her head, and rubbing her nose. She smiles at me and at the other residents and aides, she waves. What the heck!!!!!

So, I am going to end this on an angry note about her "friends". I might delete this tomorrow, but for now let me just say to those who "can't bear to see her like this" - your cowardice and insensitivity astound me. Shirley spends long hours and long days and nights in a wonderful care center. She lives for the moments when someone cares enough to spend even a scant half hour letting her know that she is still loved and has not been forgotten. I know you're busy and have full lives, but there might come a time when YOU are in her shoes. Buck up, take a moment to remember her as she was, but do it at the care center while you're holding her hand. It's such a small commitment on your part. She was your best friend . . . and she misses you.

Summer - so long coming!

I know, it's been awhile, but here I am again. This summer has so far been a wonderful summer in most respects. Because I moved in late in August last year, I didn't get much opportunity to play in mom's house and yard. This year, I have become quite the "yard bird" in that I bought a new weed eater (18 v. battery operated) and a new reel mower to cut the grass. The mower provides me good exercise for the little front and back lawns, no need to buy gas or oil, it pushes easily and I get a good workout at the same time. I have also planted a bunch of flower baskets and hung them from the dogwood tree out front, and have some tomatoes and cucumbers started too. Turns out I really like being outside and enjoy the satisfaction of seeing things grow and thrive. There are some occupied bird houses out back, and I have hummingbird feeders out too. I had two brand new fawns dancing through the yard last week . . . awesome. It appears I am becoming attached to the place - and am thinking of buying it when the time comes. We'll see.

OK, as for mom news - I am still going almost every day to help her with lunch, Mike is there often visiting as well, and Tom and Julie go too. Ed is still around and takes Shirley out for a ride almost every Sunday. He's a rock. Shirley seems to be on a plateau as far as her disease is concerned. She still needs help walking (two aides at least) and the ultralight wheelchair I got her has been a great way to get her out and about on nice days. Her appetite is good and she seems to be pain-free for the most part. She's been getting some physical therapy of late, and she is able to "pedal" her feet while in the chair with the footrests out of the way. She talks often, but isn't often understandable. Once in a while something comes through though - for example, one day when Mike and I were sitting on her bed and yakking to one another, she looked up at me and said clear as a bell, "Just shut up!". Mike and I both burst out laughing, when she suddenly looked Mike in the eye and said, "And you too!"

I understand that mom's sister Marilyn and her brother Gary will both be in the area next month for a couple of weeks. I sincerely hope that they will want to see their sister, though I know it will be shockingly rough for them. I don't imagine that Shirley will recognize them, but hey, you never know. I'll do whatever I can to help them through the initial visits if they'll let me. Meantime I continue to be grateful for all I have, roof over my head, food to eat, car that runs, kitty who loves me (see my little Butterball below) and family, including mom, all around. I'm sure blessed. I miss all my far away friends (and my job and my condo and the pool up there in Amherst!), but I'm in a good spot and will stay here as long as I'm needed. Thanks for reading and feel free to give me a call or a comment. More to come!

Always eat dessert first!

Yesterday was a really nice day, and the first of the summer's "Second Saturday" events at the Market House. Small-town living means we have a sort of farmer's market on Saturdays downtown, and during the summer, every second Saturday of the month brings in all sorts of musicians and artisans to set up shop too. It was a lively event, and I almost bought a piece of jewelry that I didn't need, but reigned it in just in time. Instead I spent 4 bucks on a little hollyhock plant to put in mom's front yard.

I had a good visit with mom at the Crawford County Care Center afterward, she woke for lunch and then we got her into a chair and rolled outside to sit in the sun. No sooner did we get situated when little brother Mike came striding down the sidewalk. I was so glad that he finally got the opportunity to visit with mom, as she has been asleep the last two times he came. We spent a good hour together till mommo got sleepy, then we rolled back in for a little raspberry ice cream before she dozed off. Mom no longer walks, so I have ordered her an ultralight wheelchair that we can easily get into the car. She doesn't feed herself anymore either, so I get to visit her almost every day for lunch and a couple of hours together.   Today, Mother's Day, will bring her friend Ed to pick her up and take her to visit her sister-in-law over in Conneaut OH.  Happy Mother's Day to, moms everywhere!

What prompts me to write today is the death of one of the residents at CCCC. Joe was a cheerful old guy who always had a smile and a mumble/grumble for me when we met. He was unable to walk or talk but had an appetite like no one I had ever met. Joe always started with dessert before attacking his main meal, at times all but scraping the finish off the plate before looking around for more. He also had congestive heart failure and was "liquid restricted" to only a cup of coffee and one juice at mealtimes. Joe was in his 90s and passed away on Friday. So, RIP Joe, and take a lesson from him - always have dessert first! Blessings to all my friends.

I've been lax . . .

I know, it's been a while since I've visited and posted here for the few of you who read. I think it has a lot to do with having nothing really new to report. However, that being said, I'll do the best I can to update.

Back in January or February, I asked the staff at the care center to please have her doctor (ask me if you want to know who) review mom's medications and to consider reducing her anti-psychotic medication, as more often than not mom was sleeping during the day. I also began complaining that Shirley was constantly constipated to the point that she was shouting in pain when placed on the toilet. Well, about 10 days ago, it was me who was shouting - at the head nurse. We were not very nice to one another in view of all the staff and residents, with me saying that we can put people on the moon and cause a 99 year old man to have an erection with a pill, why couldn't someone help my mom have a comfortable bowel movement? Not the words I used, but close. What I learned is that the doctor only visits once a week and then only the five neediest patients are addressed. I also learned that sometimes there are doctors who don't even SEE the patients, but only see their charts. Unacceptable. It was only after I told the staff that if I needed to, I would start making phonecalls and writing letters to the county commissioners that my concerns were finally addressed. Mom was started on an OTC med called Colace for the constipation and her anti-psych med was reduced by half. FINALLY!! She was also prescribed an appetite boosting medication - without consulting any of the rest of her family. While I'm grateful that she is now eating, pooping, and staying awake during my visits, I made it clear that family should be involved in decisions about what medications mom is being given. 

WHEW - I wonder what happens to those poor people who have no one to speak for them? I guess I pretty much have the answer to that. Anyway, to give you a little more information about how Shirley is doing, I have to say that most of what she has to say is now reduced to nonsensicle babbling and that getting her up and walking has become a near impossibility. Her steps, so sure less than a year ago, are reduced to tiny forward shuffling movements, and then only with someone holding her up, sometimes two someones. She is incontinent most of the time and getting her in and out of a vehicle to take her places is going to cease soon unless one of us buys a wheelchair van. And of course since she doesn't know who she is visiting or where she is going, that's not a likely scenario. I see her every weekday to help her with lunch, as she is not able to hold and manuver her fork and spoon anymore. She has lost interest in chocolate, which was a daily requirement not so long ago. And here are the scary parts - she might stay on this plateau for another few years - and she will inevitably get worse. I know, as I see evidence all around her of what's coming.

All that being said, I am still blessed to be able to visit her every day. She may not know who I am, but she still likes me. I'm grateful to have her in my life and I'm also thankful to her friends and my family who have not abandoned her. It's a hard journey for us, but harder for Shirley, who knows that someting is very wrong, but is unable to put a name to it or to make it better. Hard to believe that the best we can do is to put our arms around her and make sure she knows that she is loved. For us, that's the easy part. Happy Easter everyone, be sure to say I Love You to lots of people today!

Like winning the lottery!

Hello world, and especially to my friends who still read this crazy blog.  I sure do miss you!

It’s been a wild and wonderful rollercoaster winter so far, not more than one or two shovel-able snows, mostly it flurries, then it warms up to 40.  Even though I think it’s really been nice, mom’s sensitivity to cold keeps me from taking her out often.  In addition, she seems to have dropped a little lower on the latest plateau, and is sleeping quite often during the day.  Some days when I come to help her with lunch, she is almost comatose, and any attempts to wake her angers her no end.  I’d rather she sleep than to get upset about it.  Staff will always make sure she eats.  Other days, she will actually open her mouth and take a bite, chew and swallow, all the while still dozing.  Like feeding a baby, I would guess (no experience there for me!) She is pretty much done feeding herself . . .

So, visiting the Care Center has become a daily focal point for me.  I look forward to seeing staff and patients alike, and they seem to enjoy having me.  Sometimes when they are all seated in the dining room and waiting for trays to be delivered, I get up and lead a sing-a-long .  Mostly I do this to entertain myself, but it seems to make them happy too.  Today we sang “B-I-N-G-O was his name-O” and “You are my Sunshine.”  I’m thinking Coming’ Round the Mountain might be a good one for tomorrow.  I have asked if I might be able to do some volunteer work there, and was told to please just keep coming at lunchtime.   I love them all, staff and clients alike.

Today when I got there, mom was up and shuffling around the hallway, so we had a pretty good visit.  She had slept through breakfast, so was given a Danish around 11 a.m.  That meant she didn’t want her chicken parmesan for lunch, so I got to eat that.  She did drink her milk and her protein shake, and had her cherry pie.  Afterward, we walked to the end of one of the hallways, where we sat in sunshine and she fell asleep.

Now, here’s the big news for today.  After leaving the Care Center, I drove into Meadville and up to the big Salvation Army store to do some shopping.  I want some new jeans!  Well, in spite of the number of racks I rifled, I found none to suit, but – as I rounded the corner toward the knick-knack area, I saw a real treasure.  It was a huge plastic bin filled with 13 – count ‘em, 13 – brand new unopened packages of Depends in mom’s size.  They were marked $2.99 each, with 20 in each packages.  I didn’t hesitate, but threw my purse into the bin, bent over and pushed it to the checkout counter!  For about $40, I got 260 diapers for mommy!  Do you know how much those things can cost?????????  I felt like I’d won the lottery!  So, the back of my car is filled with diapers.  I’ll unload some into the basement tomorrow morning and likely donate some to the Care Center in addition to stocking mom’s closet with all it will hold.  Life is good, no?  Actually, life is good, YES!  I’m so blessed.  Thanks everybody.  I miss talking with you, but I sure do love that you miss me too!

Restraining ourselves

Well, I've been very lax when it comes to staying on top of things, and I apologize. However, now that the holidays are behind us, today seems to be the time to write.

I've been going to see mom as often as I can 3 or 4 or 5 days a week, depending on the weather. Yesterday was one of those days when I opted to stay home and watch 15 inches of snow pile up in my driveway. I got all dressed in layers and went out to shovel around noon on Tuesday, wound up getting my whole face chapped, worked myself up into a wicked sweat, and came back inside to cough and hack all night. Didn't sleep well at all, but will do better tonight with clean sheets and blankets on the bed . . .

So, I went to the care center today, had lunch with mom, and noted pretty much right away that she had something wrong with her right arm/wrist. After some investigation, plus conversations with both the nurse and the physical therapist on duty, we narrowed it to the wrist. Now, I can't say for sure that anything untoward happened, but during my visit today, spoke with several people, and one in particular raised my suspicions. I'm going to keep this close for a day or so, but will probably take a photo or two of the bruises I noted just to have on hand. I can't have anyone losing patience with mommy because she has dementia and is 99 percent deaf . . . now can I? I'm pretty sure my concern translated itself to all the staff members.

Meantime, let me say that winter has been pretty good up until this week when we got our first big snow. Getting her out and into the car is a task in itself when it's cold outside, but snow and ice make it nearly impossible. Tommy and his family still go to see her regularly, and her friend Ed is always on hand a few times a week. We had a lovely Christmas Eve lunch at Tom and Julie's with mom and Ed and family, and here is a picture to prove it.

Stick around friends, I will really try to do better about blogging - it really is cathartic . . .