Mom Update, April 23, 2012, Monday

This past weekend was an active one for mom again. Claudia and I brought her and dad to the movies on Sunday to see a World War II movie. I wasn’t sure if mom still enjoyed these movies or not but she was eager to go. She enjoyed the movie very much. Some of mom’s preferences for food and activities have drastically changed since the stroke which is common with a head injury. As Claudia prepared mom for the movie, mom asked if she’s been to any other movies yet and Claudia said yes, she had been. Claudia then gave her a clue as to which other movie she had seen saying, “Meryl Streep was in it and she played a political woman in England named Margaret….” Mom said, “Oh yes, Margaret Thatcher.” Claudia couldn’t remember the name of the movie, but mom did (The Iron Lady)!!!

 When we have brought her to the movies, we now get special hearing devices for the hearing impaired for her to use (you get them at the ticket counter). Mom loves using these and thanks us every time. The device looks like headphones and there is a small transmitter box attached to it that receives direct transmission from the movie (an auditory trainer of sorts). Since the stroke and aneurysm, mom has trouble filtering out background noise as well as selecting the correct person to focus on in a conversation (it is like an auditory sensory overload). It is also frustrating to see how many places, in 2012, are either not handicapped accessible at all (one of the local movie theaters in her town is not), or how many places think they have a handicapped accessible bathroom and don’t (some are too narrow, like the one we were in yesterday, while others are too small or don’t have the bars at the correct locations on the walls). Out in the parking lot, someone had parked in a ‘non-spot’ that covered the wheelchair ramp! Mom enjoyed the movie a lot though.

On Saturday, Claudia brought mom out to lunch with Claudia’s friends from work. They went to a local diner. Claudia wrote the names of everyone on a napkin, in the order they were sitting, and placed it in front of mom. This fully helped mom remember who was who. Mom knew all the women there and named 2 of the 3. Mom mistook the 3rd woman for a friend of theirs who had passed away. It was amazing that mom made that connection and remembered the friend who was deceased.

Mom has a tendency to ask the same questions over and over and over again, even though she sometimes knows and remembers the answers (I now ask her the question after I have answered it for her 2 or 3 times, and she remembers the answer). On Saturday at the diner, mom engaged in a repetitive theme rather than repetitive questions, which is progress. Instead of repeating the same thing over and over, she engaged in a repetitive theme which was much more socially and linguistically appropriate. She kept saying things like, “I have the best children” and “My kids are great.” She couldn’t remember what she ordered to eat (this is typical of her now) so Claudia wrote the information in a sentence and left it on the table in front of mom. This visual prompt really helped with her recall greatly.

Mom also walked to the bathroom with the walker for Claudia!!! This is big stuff! She usually only walks for Anthony. Anthony told her all about how important it is for her to walk more and for everyone. Mom must be listening!

Later on Saturday, Claudia asked mom if she wanted to go with her for a manicure and mom complained vehemently that she didn’t want to go. So Claudia asked her if she wanted to go to a park and relax and mom said yes. Once they arrived at the park, Claudia rolled mom to the edge of the lake and under some trees where there were some Adirondack chairs. Claudia told mom she was going to transfer her from the wheelchair to the Adirondack chair and mom did it (Mom is now a one person transport!!). As Claudia and mom sat under the warm breeze of the trees (mom under a make-shift blanket), relaxing, watching the water and ready to doze off, mom turned to Claudia and said, “What a beautiful day. Thank you for keeping me alive!”

“We appreciate what you've done in every way and in every place, and we want to thank you very much.” Acts 24:3

Mom Update, April 15, 2012, Sunday

A quick update...

Claudia came up with the great idea to take mom upstate to Cohoes NY to see the play, Sunset Boulevard, which Jean has a role in (he was wonderful, by the way!!!). So....as we now sing since Ava directed the play HONK last spring---"We're offffffff!!! on a wild goose chase!!!" Terry, Dad, Mom, Claudia and I embarked "on a wild goose chase!" The good times did, indeed, roll!

Only Claudia would come up with such an idea as this AND investigate all the details as well. She researched hotels in the area and found one with a fully handicap accessible room and shower and everything! Claudia and dad packed up a huge 'foam wedge' for her head to be inclined in bed, along with metal bed rails, her clothes and extras... and early Saturday morning, we left in 2 vehicles to make the trip. Mom did great!! We are all big on 'books on tape' and Claudia played "Camp Wobegone" in her car with mom and dad. Mom loved it. It took us more than several hours to get there (typically a 3 hour drive, it took us about 5 with some stops along the way). We stopped a few times, but really just to be safe, not so much that mom needed to stop.

We ate out---mom loved it. Mom loved Jean's acting and the show!!! What a professional production....we all are so proud of him. Sunday morning, after breakfast, we decided to surprise mom and bring her to her and dad's property upstate. Mom recognized the towns along the way and was so glad to be at the 'property' and their trailer!! Mom also saw the local Sheriff who she and dad have known for almost 35 years now and he was thrilled to see her and she him!! Mom also saw her dear friend, Pastor Dot as well!!! The reunion was wonderful!

It's funny, because sometimes, mom is so lucid and present, while at other times, she is really far off. One minute while we were upstate, mom was whining like a 3 year old, literally, that she doesn't want a shower and doesn't see the need for one now when she had one yesterday.... and the next minute she was surveying all the equipment we brought with us for her (thanks again to CLaudia---who even continued to make a list of 'things mom needs when she goes away') asking if we remembered to write off all the additional medical costs in items she now needs for her care in her tax return!!! Such is the nature of a head injury.

I am currently reading Jodi Picoult's newest book, Lone Wolf, which is about life support and making the decision to keep a loved one on life support or not. So as mom and I sat in the lobby of the hotel with Claudia, I said, "Mom, before you had the aneurysm burst and the stroke, you had signed papers saying that you never wanted to be on life support or a vent. Do you remember that?" Mom said, "Oh yes, and I WAS on a ventilator for a long time." I then told her that dad and I decided not to abide by her original wishes and to keep her alive and then I asked, "So how do you feel about that now? Do you still feel the same way, that you wouldn't want to be on life support or a vent?" Mom quickly replied, "Oh NO!! Do it, do it!!! I want to live as long as I can!!!" then she giggled and said, "I want to be around a long while so I can be a nuisance to my friends and family longer!!" Claudia then asked, "Mom, what about your quality of life now? Are you happy?" Mom said, "I like that people do things for me now and I don't have to. And I like having my friends and family visit me and stay with me, but that's it, but that's enough. Yes, I'm happy. I want to be with all my friends and family." I thank God that we still have the opportunity to make memories together.

Amen.

"but life is at work in you" 2 Corinthians 4:12

Mom Update, April 13, 2012, Friday

Where to begin??!! It's been a while. I am attaching a video of mom walking with the walker, along with some pictures!! (friends and family can facebook me for pictures and video)

We have all been enjoying mom so much. everyone took mom to Palm Sunday mass and mom sat with the choir and sang with them again!!! Lenny and I were upstate that day but I bet there wasn't a dry eye!! Anthony, Con, Sammy and Ava came to mom's on Good Friday to make Easter bunny bread like mom usually does. They had a great time!

Mom had her stoma surgery and all went well. She is doing outpatient physical, occupational, and soon speech (for memory) therapy 3 times a week for the next 10 weeks at least!! Their goals are to have mom walk independently and consistently with the walker and to have her be able to dress and bath herself.

The aide who comes 6 days a week is wonderful with mom and mom is very comfortable with her. Dad frequently brings mom outside and she watches him while he works in the yard---one day, he even gave her some clippers and had her do some pruning in the flowerbeds!!!

Anthony and Con have her stand at the sink and wash dishes sometimes---to which mom asks, "Hey, wait a minute...whose idea was this?" Anthony continues to consistently work with her teaching her to walk-----he is amazing!!!! She wouldn't be standing or taking steps without him...he does better than the physical therapists who worked with mom!! He is very patient and persistent and he basically thinks about which muscles are used for what positions, he looks at where his feet would be placed for certain activities like walking and standing and then he models for her and teaches her how to stand, walk...it is just beautiful. She responds well to him. Terry and dad are with her the most. Claudia comes a lot too to work on cognitive skills and bath her sometimes. Anthony Michael and Sammy come to visit and sit with mom a lot and Ava, Jean, John and Lenny and I all come when we can. I usually get there once or twice a week.

Dad and mom have settled into a routine. The other day, I went with them to the neurologist (who, by the way, is amazed with her progress each time he sees her) and dad and mom have getting into and out of the car down to a science!!! She holds around his neck and then stands, but before she stands, he reminds her, "Put your arms around me, hon" and then they both break into song, "Put Your Arms Around Me Baby, Hold me Tight!!" Don't get me wrong...there are plenty of frustrating times and days too--but the love and comic relief in between helps!

So, is mom back to normal? Well...the day before Easter, after I went to NJ to pick up Aunt Sophie, mom, Aunt Sophie and I sat at the dining room table to make French Toast Casserole for breakfast the next day. As I broke the 2 dozen eggs into a large mixing bowl one after the other, mom commented, "Oh you're taking a big risk there missy! How do you know one of those eggs isn't bad and then you'd ruin the whole bowlful. You should be cracking them one at a time first into a small cup." She continued to critique my cooking skills the rest of the time!!!

So is she back to normal....? Sometimes, she is amazingly so...probably about 92% there. At other times, she is far from the same. Most of the time, she is there and OK though. She still can't remember that she is home and often talks about going home soon---she thinks she lives in Brooklyn at one or two places she lived as a young child and young adult. She forgets a lot of short term memory things as well. I have noticed that she will frequently ask the same question over and over again....at these times, I answer the question the first 3-4 times and then from then on, I ask her what the answer is and most of the times she remembers with a phonemic prompt or none at all. She still has "no agenda" for the day---wherever you place her in the wheelchair, that's where she is content to be. She doesn't make plans -- not even to go to another room or do an activity. But then again, she is happy (thank God) and content and for the first time in 65 years, her blood pressure is normal!! She doesn't even take any blood pressure meds anymore!!!

I did mom's nails and cut her hair for Easter. She loves to be primped. Claudia showered her and did her hair on Easter Sunday morning.

On Easter Sunday, it was a bit like the book, "Stone Soup" which is a story about some soldiers who come to a strange town hungry and begging for food. Thought the townsfolk said there was none, the soldiers decided to concoct a pot of stone soup---placing 4 large stones into a pot of boiling water. Little by little, each town person came to add "just a little something" to the soup like a carrot, celery....soon they all shared a luscious soup!!! Well, Easter Sunday was like that. Typically, for as long as we all can remember, mom and dad host a HUGE Easter Sunday breakfast for family and friends. Mom makes all kinds of delicacies....but she couldn't do that this year. Dad said we'd have a simple bagel and butter breakfast so that we'd still all be together.... Well....though we all are so busy... Anthony, Con and the kids and Ava came to make the Easter bunny bread, I made Easter Pie (Pizza Rustica), and Stuffed French Toast Casserole, Claudia brought lox and bagels and made a huge quiche, Terry made horseradish and beets and brought fruit, Rie even made mom and grammy's cheese blintzes recipe!!!!... We begin that morning, all together again, as Ava said when she was young, just like "the good old days" and Lenny lead us all in prayer to begin our day...we are so truly blessed indeed.

You have all wisdom and do great and mighty miracles." Jeremiah 32:19