Mon May 6: Tied to the Phone

Well, not just the phone but the computer for emails and faxes.

A long day - that of course ended with stress.

So first I got a fax with consent forms to sign for hospice.  I printed that and read it and sent email questions to the email on the fax.  Got some answers via email, wrote more questions.

Then called the doctor to verify what mom's terminal illness is that qualifies her for hospice.  It's dementia with age - there was a fancier name I should have written it down.  The doctor was very nice with taking time to discuss with me.

I didn't write down the order of remaining calls/emails.

The case manager at the rehab center called and said mom had a new splint that was more secure, and she was eating okay.  She said I think that she had spoken with Lu to notify her of the day of discharge and everything was okay.  She is going to check to see if transportation should be in wheelchair or flat - and will call back.

I guess I wrote so many questions about the form they had a person call me and walk me thru my questions and how to fill out the form.  She said after 90-days they have to write  report to get funding, then after another 90-days it's the same, then it goes to every 60-days.  That nothing would change for mom or for me if things were the same with mom.  The broken leg made this apparent to them, but didn't cause it.  So the original insurance will still be used for the non hospice things.  She has ordered items to be delivered to VLM for mom.  Mom's primary care doctor agreed with arrangements and would stay with her as doctor.  After the call I thought I had a clearer idea of how things were set up.

But then Ci sent me email that Lu had called and said they usually worked with a different hospice.  Someone from that company called while Ci was busy and she didn't get their name or number.  As soon as she could she called the insurance hospice to verify they worked with VLM. They said they did and it was up to the family what hospice service they used.  After all these hours on the phone, reading, verifying - what a monkey wrench Lu has thrown in.  I have worked to develop a relationship with her doctors and don't want to do anything to jeopardise that.

I wish she had mentioned something way back the first time I had called her. But then in retrospect she never called me, I just heard she had called or other people had called her. I always asked to be sure they consulted her...

So the day ends with stress again.

I wasn't even able to do any stress releasing FMQing as it turns out I bought the wrong foot for this machine. Ugh!

I don't see what difference it makes with which hospice service works with mom - they only work with one person at a time anyway.

I'm missing something.  Hope it isn't sleep!

So I'm just waiting now to have Lu's son email or text me with what to do.

Sunday May 5: Harvard Mayfair

This morning we got a pretty early start (for us) and stopped by Harvard Square to see the Mayfair.  It was a massive collection of a variety of booths - food, crafts, businesses, fun!  The roads were closed off and the streets were lined with the booths.  So many things to see and buy and eat and think about.

DH was intrigued with a folding wooden chair that provided extra support for his back - I was interested in food!  We shared a plate of Korean food Bulgoki YUM! from Takemura on 18 Eliot Street. YUM!  It's a Japanese restaurant with Korean food too - anyway I'll have to go there and eat sometime soon!  Their dinner menu has pretty high prices - I got rice, cabbage, onion and half beef and half spicy pork bulgoki for $7 at Mayfair. That is closer to their lunch prices...  We also had a plate on Indian food that was very good too - from a restaurant on Newbury Street.

Then it was off to the T to go to Davis Square!  There was an open house for a nice place - problem was it was right next to an apartment and parking lot - probably too close to the city part of things.

After that we went to an art gallery with a twist - it was fiber art.  Fun food made of yarn - and other things.  They are having an event in August that DH said he would enter - something to do with maps.  So that was fun.  We stopped at Goodwill and I found a super little shirt for my son's friend - then we went to Dunkin Doughnuts for a regular iced coffee - it was delicious!  The coffee cake muffin is very good - DH gets those and they are always better than the doughnut I get.  This time I didn't bother eating it all....

Then instead of going on the T right away we went out a different door and walked along a parkway - a bikeway built on top of the T line.  Beautiful trees, benches, it was very nice and made us realize we liked this part of the city too.

Sometimes it's Cambridge, sometimes it's Sommerville...  We made it to Mass Avenue then saw sign for a garden to be open - it was an oasis in the city - so restful.  Water, chimes, rustling leaves and a few flowers too.

Davis T Art

We made our way back to Davis and took the T to Harvard so DH could get his chair - and I got him a grilled sausage sandwich.  He took the bus back while I walked and enjoyed the last of the sunshine for the day.

We watched an episode of The Tutors.  I made phone calls to check on mom and other things - now he is listening to a podcast and I am not sure what I am going to do now.  It's dark, a  little chilly but I think I'd like to walk some more.  The light in the dining/sewing room isn't very good at night time.  I could set up the machine but don't think I should sew now....

 

The people at hospice seem very organized and nice - seems things are covered pretty much under Medicare Part A - there will still be some medications we get thru Secure Horizons but they will write the prescriptions, etc.  They will fax a form for me to sign and return - seems the only remaining things are the doctor to okay the students to do upper body exercises and to get the okay to transport her back to VLM in our van.

I'm a Winner: Fresh Off the Spool

I got email from gmail that my mail box was too full again - something made me look at the headers of emails in my SPAM folder and I found that I had received an email last week that I had won a really nice drawing - the first by Danielle of Fresh off the Spool.  Her email asked me to reply by Friday - but I didn't read until this morning so we'll see if being one day late means I don't win her wonderful selection of things.  It's the ruler that I can immediately use - but since I'll be binding soon too those clips sure would be nice too.

But in any case, I'm glad I found her blog and hope you will visit it to see all the interesting projects she is working on.

These are the items in the drawing:

• Clover Wonder Clips-I love these and use them all the time! They are great for binding. No more pins sticking me!!
• OLFA non-slip Frosted Ruler- I love this ruler because the frost makes it easier to see light and dark fabric no matter what color your cutting mat is. I also love the very thin lines on it to make more accurate cutting.
• True Grips non-slip adhesive rings- This will help with the ruler. Although the ruler says non-slip, it does. If you add these rings, or even the dots in the rings, believe me, it ain't going anywhere!
• Clover Seam Ripper- Clover has a few different styled ones. I love this because of the very small blade, and the handle is so comfortable
• Schmetz sharp needles- I just like these best.

Update! I wrote Danielle before she drew names again so she will be sending me all these useful things!  Good way to start the day.  : )

Fri May 3: Extra Care and Rosebud's Diner

This morning DH and I walked to a new place in Central Square for breakfast - it was really nice - not sure why we hadn't noticed it before.  We both had noticed separately last week - it's between a coffee shop and a little store - neither than we have visited, but they are on the way between Harvard and Central.

After that he went to the Main Library and I went down to the Central Square Library to get the class list for the water color class later in the month.

On the way I passed a beautiful yard of tulips and other flowers, ended up meeting the owner and having a nice time chatting with him.

 He planted over 1000 bulbs last year when he inherited the apartment house from his uncle.  They are even more dramatic in person!  He told bulbs have to be redone every three years about - so he has a little rest this year and can work on the inside units instead!

I learned more about the neighborhood and restaurants he enjoys.  He was a good person to meet.  We exchanged emails and he sent the list of restaurants so I wouldn't forget and could visit them.

The supplies for the class will be around $30 so I bought some today and will return later to get more.  I visited Rodney's books on the way back and saw some nice books - I thought I'd go back on Saturday to look more.

At home I worked on getting the file up to date for our little business in Quickbooks.

I read in the paper that Rosebud Diner had been sold and was going to close the end of the month, so when DH came home I suggested we go there for dinner.  It's a train car made up for seating for cafe...  The food was very nice.  We had grilled combination of meats - and dessert.

While we were walking to dinner, a lady from hospice called and said my mom met the criteria for their home health program.  So when she is discharged from the rehab facility she will have home health people come to visit, and the assisted living place will be able to call for help 24/7.  What a relief to have this extra help for her.  I'm so sorry though that she had this accident and broke her leg bones - she was enjoying going to her exercise program and to have her nails and hair done each week. Hopefully by the time I return she will be back to being able to do those things.  The hospice lady said she was being given pain management pills twice a day now on a schedule.  My friend said she was back to saying it was a nice day and was eating her food so I guess the pain meds are working. Accidents happen, but I am surprised or maybe not surprised that the family of the lady who made her stand up and then let her go has not called to see how my mom is doing.  The doctor said being in hospice care does not mean they have a timeline for the end - just that they work to be sure she is comfortable.  I'm hoping when I return she will be able to go back on her program of going to program and to the beauty shop.  To that end I'll get some students to come to her to work on upper body stuff as soon as the doctor gives the okay.

I finished up all the Quickbooks stuff that I wanted to - there is still more, but I'm hoping Saturday to be able to clear the table and actually sew!

Wed May 1: Juice

After reading emails, went to Life Alive to pick up food for the day.

Life Alive, Superhero Alive, Jive Alive, Simply Alive & Wheatgrass

DH and I split the salad, the Life Alive and Simply Alive Juices for our first meal of the day.  Delicious!  (I had the wheatgrass myself as it builds red blood cells, something he is not supposed to need help with.)  So we have the same amount of food to split for another meal today - sweet!

Explorer Salad & Green Goddess Bowl

All delicious - I'm not sure if I'll be able to actually do an all juice 3-days as Tina did at Carrots 'n Cake, but I'm so glad I read her entry as it hadn't occurred to me to even try the juices at Life Alive.  So far the juices just take good, we have a few more to go before we have tasted them all.  I wanted to taste ahead by sharing with DH just in case there was something I didn't like at all!  Just in case I do try a 3-day juice adventure.

It was only $45 for all this freshly made goodness, still less than the $60 Tina was paying just for her juices...  I enjoyed the 3500 steps to and from the restaurant too!

There were more calls regarding my mom today, she is doing well.  Eating and saying "it's a nice day."  The sent a fax that she would be at end of coverage on Friday so that meant a bunch of time calling and trying to figure out the system.  You'd really think these rehab places would do a better job of communicating with family members - but this is our fourth experience and even though now I know a little better what to expect - I expect to be surprised at the end. And if again they discharge her without pain medication prescription it will be running around to get that settled.....

Tues Apr 30: Juice, Trivia, and Stress

I read a blog post about someone doing a 3-day juice cleanse and decided I'd better try the juices from Life Alive before we have to leave here....

So today I got two juices to split with DH Thrive Alive and Be Alive and then a Warrior Salad and The Fool Bowl.  They were a delicious way to start the day!  I haven't been stopped at Life Alive as it's so dang crowded all the time - but going earlier in the day makes for way shorter lines and it's doable.  Although getting the food ahead of time means it's not as fresh when it's eaten.  But boy is it good!  My plan is to continue going earlier in the day and observing how things are prepared so I can be independent when I'm not longer living in this wonderful place.

I finally got going on the Quickbook stuff that I was putting off as we didn't have a printer...  Taking notes, trying to remember the correct order to put new information in the program.  I'm so much better at using QB now - I know how to delete entries and to start over.  Hoping I can have some good solid hours of working on this so I'm all up to date soon!

We went to Porter Square and starting walking to Magoun Square - the phone rang.  My friend watching over house and my mom said the place was calling saying she had to be out of there by Fri or Sat or Sun or Mon. The lady hired to make the phone calls has a really bad accent and is new to the job too. She hadn't called VLM yet - what a mess!  So I couldn't call then - but did as soon as we made it to Magoun Square - I let my worrying ruin the walk though so that's a shame. When I got to Magoun I stood in a parking lot so I could hear and first called Ja of VLM - left message.  Then Lu of VLM left another message. Then I called the case worker with the accent and tried to understand things.  I knew mom would not be able to stay there for long, but had been told they would help find a place for her to go to - but apparently that was incorrect information or the case manager didn't get that memo.  After that I called Ci and got her up to date.  I think I was on the phone for an hour. Later I called DS so he knew too - he was already going by there to drop off the signed form I had faxed with the legal papers.  So what should have been a nice evening was marred with stress.  In all this my mom is doing well - it's a nice day! and eating food well.  She can't move the broken leg so she can't do PT so that is why she has to be moved.

We were at Mogoun Square for the trivia evening again with our friends - at half time we were tied for first place - at the end we were in third place and won a $10 off coupon that we used on our bill for the evening.

For my mom legally VLM can take her in - but they don't have to.  So we have to get in touch with them for decision.  I'm hoping they will say okay - mom has lived there for 12 years (with three owners) and now will have home health care and nurses come by to support her too.

If they say no then I need to find another place for her - I was feeling supported after talking to the doctor the other day - the case manager is new and didn't seem to think she would be able to find a place in three days - that's a short amount of time she said!  Like it would be easier for me to find a place in three days than her.  

I'm thinking a major revamp of how we organize our lives has to be changed - caregiving and working with insurance need to be part of the curriculum and work weeks should be modified so people have at least a half day to deal with all this stuff.

Oh well.

I tried to work more on QB, found something I had done incorrectly and fixed that, but then off to bed for me.

Wed April 24: Me, Me, Me

Today there was another flurry of emails and phone calls regarding my mom.  The facility wasted our time by changing their mind several time - mine I was able to email or clean while waiting, but poor Ci was there before 9 as they said they would be doing PT again between 9 and 10.  She roused my mom so she would be awake when the PT people came in - but they didn't come in.  She went around to try and get information but wasn't able to get any answers.  She stayed until past 11 then texted she was going to get meds for herself and have lunch.  At 1 their time the case worker left a message on my phone that at that exact time they were transporting my mom to a different facility.  When I pressed to call back the number did not pick up.  So I texted a left message for Ci so she knew.  and DS so he would know too.  He decided to go to LA with his friend on this Wednesday so he was not around.

To try to de-stress a little I went out walkind and decided to have a manicure and a pedicure.  I tried a new place in Davis - it was $35 so I felt better about doing it. That is still much higher than I usually pay in San Diego but seems to be on the low end for here.

Around 3 a doctor from the new place called me mainly to discuss advanced directives.  I have all this filled out and signed but did not bring a copy here so I was trying to remember from memory what things had been discussed with mom and checked off.  It's so unfair.

So she said - based on I don't know what - that mom would be there for 4 months - not the 2 that I thought it would be.  So I'm thinking we need to move her out of the place she has been living all these years.  The place that had the lady hug her to standing and then let her drop and break her leg.  I want to talk to Ci before doing this move.

I'm looking forward to all the company will be having this weekend, but also wish things would calm down so I could just think.

Tues Apr 23: Piles and Pasta

Fitbit Activity: 8862 steps taken, 11 floors climbed, 3.69 miles traveled, 2009 calories burned, 530 active score

 Today we woke late - around noon.  We got dressed and walked down Hampshire for breakfast to Emma's only it turned out Emma's is a lunch and dinner place.  We split a pressed sandwich and salad and realized we really didn't have enough time to go to the Goodwill Store in Roxbury as we had planned.  So instead we went to the Garment District (not a district, a store) - it was really close to where we were.

DH went to the men's department, while I stayed in the By the Pound section....

This time the clothes were sort of arranged by color - and it seemed much nicer than when I stopped before.  I found several 100% cotton shirts to cut for projects, and a new jacket for me, a dress shirt for DH and several shirts to give to my son's friend.  So it was nice.  DH got pants and shirts.  He likes huckstering as he calls it.  For $9 I got 13 pieces of clothes so that's a good deal.

On the way back we realized that I didn't really have time to go home, as I had to be in Davis Square for the Dave's Fresh Pasta cooking class.  Tonight we took: EMILIA-ROMAGNA: ITALIAN COOKING The art of hand-made egg pasta is at the heart of Emilia-Romagna cooking. Learn to make a quick pasta in the traditional manner using durum and semolina flours and egg. Slow cooked Bolognese sauce along with the region's most famous exports; Proscitto di Parma, Parmigiano Reggiano and balsamic vinegar from Modena will all be used in traditional recipes from the region.

There were only five people in the class. Two I didn't know, then Ba and Me so it was fun.

We made the most tender pasta tonight that I have ever had. It was just 1.5 cups durum and semolina flour and two eggs. Put flour in bowl and make a well then break the eyes and make scrambled eggs with a fork - slowly the flour with come into the eggs. Once it's not sticky dump the flour on the counter and put the misture on the top then knead and bring more flour in. He said the dough would let us know when to stop adding flour - keep kneading for at least five minutes, then cover with plastic wrap and let it rest for 15 min to 2 hours to relax the gluten. Then unwrap and dust hands with flour and knead for a minute or two. Then you use pasta maker to make the dough thinner and thinner and then finally cut to the shape you want.

We made noodles and added to bolognese sauce - which was more of a meat sauce with a little tomato than what I thought it would be.

We also cut circles and made tortellini - putting a mixture of ricotta cheese and eggs and herbs on the inside. Some we cooked in a chicken/beef broth for a soup and some we boiled and put in his favorite sauce of browned butter and sage.

So this time there were lots of left overs so we have lunches and dinner of this food coming up in the menu here!

At the end of class Ci called to tell me the PT people told her my mom wasn't cooperative today,  when they came in to, well I'm not sure if it was to evaluate or to do a session.  I had thought they would let her stay still for a few days, but am now reminded that they push people to get moving immediately - and my understanding is that if they grade her as uncooperative or not making progress they can give her the boot  - move her to a skilled nursing place where they would not have any PT, etc.

I have often thought that she really needs an IEP for health care to be allowed extra time to do things and this is very apparent again now.

The insurance system is not set up correctly for my mom to improve, I'm kicking myself that I forgot this again.

Mon Apr 22: Shea Magnolia

Fitbit Activity:  9737 steps taken, 11 floors climbed, 4.06 miles traveled, 2023 calories burned, 543 active score

More phone calls - the case worker made it clear it did not matter if we requested a place near to home, or one that the doctor would visit - we go pretty much where they send us and then only if that place accepts her.

There was a lot of back and forth on this.  I mainly was out of the picture, and actually Ci and DS were out too as the decision was made by the place.  So she is going to a place owned by a corporation  they have several of these rehab places.

The insurance will pay for part of the place for 32 days, we pay $50 a day, then after 32 days it's all out of pocket.  The assisted living place will not decrease the fee - if we want the room saved we have to pay. So it's going to be double rent for one place she uses.

Case worker said she had to be transported in an ambulance because she had dementia and was disoriented (she has been taking a lot of pain killers).  I said I thought she would be more disoriented going in a different kind of car and that we had the ramp van.  She didn't seem to understand what I meant - you mean a trailer with ramp?  No no a van with a ramp so a wheelchair can be rolled up and down. Hmm  The nurse who was listening said the splint required that she stay in lying position.  So okay - that's $200 for the transportation.

So it was past dinner time when they finally moved her.

Before that the case worker was going to order ground up food as mom was having trouble eating with her leg above her head, with splint on, being drugged up, and having apparently very loose dentures that were falling out. (I haven't been taking her out to eat so didn't notice this).  So Ci intervened and ask DS to bring fixadent on his way there - after putting that on the dentures she was able to eat  but Ci had to feed her.  So the order for ground up food was cancelled.

I don't know about the system - it does not really work for my mom. I had forgotten how much time and effort these accidents cost.  The stress is enormous for me - I will go home if needed.  Ci keeps telling me everything will be okay and she will check in on her.  At first she said every day but now not everyday.  She is taking classes and I know needs to have time to study and think about her projects for that.

Both DS and Ci said the new place looks wonderful and would be a nice place to be.  We have no choice it seems so hope it will be good for her.

Sun Apr 21: Tibial Plateau Fracture

Fitbit Activity: 510 steps taken, 0 floors climbed, 0.21 miles traveled, 2026 calories burned , 90 active score - 564 calories eaten.

Waited to hear what was going to happen to my mom.  Called the doctor he said it was a tibial plateau fracture.  He decided after consultation that her skin was too tenuous for surgery so now he had a full leg splint made and she will go to the special care center until a few weeks then they will decide what to do.

She is anemic again so is being given blood, that has to be controlled first.

So the day was pretty much phone calls and waiting. Ci and DS were at the hospital for some of the time.