Wednesday, September 30, 2009

That's Amore

Dolly is settling in nicely now at Epoch. She moved in on Friday and complained about it all weekend. Being so close to her intense mood changes, I can easily say that her actions explain more than her tantrums scream. She has been participating in activities almost every chance she can, which is awesome. She is even claiming that the food is good now. She has some friends that she meets in the hallway, and she eats with them in the dining room for lunch and dinner. She is accepting Epoch as her community, this is great!

Today I stopped in after work to have a quick visit, and I found Dolly in the Alzheimer's wing dining room. There was a musical show. A man singing and a woman on the electric piano. I just caught 'That's Amore' and realized right away how much Mom was enjoying it. She was bobbing her head and mouthing the words, I couldn't interrupt that.

I dropped by a little later, and she was in the hallway with her friends. I sat with her there with her friends for an hour. We chatted, talked about food and the wonderful dessert they had at lunchtime. There was a bit of controversy over what the fruit was that everyone had with the whipped cream, Mom said it was cherries, Marion said strawberries, but in the end it didn't matter. The dinner trucks came, the first one went into the Alzheimer's unit, the second one went to the Sub-acute unit, and the third truck was gossiped about even before it arrived. I let her go to the dining room to eat.

They are having another show tomorrow, a folk singer. Mom said she wants to go to that, and even told the activities lady that I was 'maybe' going to come to that show, too. We'll see.

Sunday, September 27, 2009

Thursday, September 24, 2009

Some Big News

Tomorrow is going to be a big day for Dolly!

We are moving to Sharon. Epoch has an empty bed and is 1.9 miles from my house, not to mention it is basically on Julie's way to and from work. I think this will be a fantastic move considering we will be able to pop in more often to visit with her. Heck, if she doesn't like her dinner, we can bring her something else! I am very excited, and Mom is too.

Mom is also a bit nervous. I've noticed that she has finally been making friends at Sherrill House, and now she will be leaving tomorrow (it is sad). This I hope, will foster her friendship faeries to make friends more quickly than she has in the past. She made no friends at Spaulding (only staff friends), and just started making friends at Sherrill House a couple of weeks ago. She has been there since June. I am so glad that she is coming out of her shell, so to speak. I hope the friendship faeries continue to do their work when we get settled at Epoch.

I had some training on transferring Dolly today. She did very well, I did very well, I think we passed. We did a few wheelchair to bed transfers, then we went outside and did a couple of wheelchair to car transfers, John(PT) is a good teacher. I feel more confident in helping her transfer which is good, and she did a great job. She still needs constant reminding on her position, her feet, locking the chair, where to push off, and where to grab. Hopefully we can make all these motions second nature if we keep at it.

Dolly also did some hallway walking with her special side walker. She needs assistance, but really, she looked good walking. I think the carpet was her nemesis, she does so much better on smooth flooring with it. Her foot got stuck a few times in the short pile, she doesn't lift her leg, she just shuffles it. It was a good job anyway, I was thrilled to see her "GO"!

Hopefully we can make some more improvements at Epoch and get her back on Medicare for the time being. Wouldn't that be sweet?

Sunday, September 20, 2009

More Norwood Day pics!

Norwood Day!

Yesterday, Kathy and I took Mom to Norwood Day. A day that they shut down the center of Norwood and a street fair ensues. Bands, booths of information, booths of goods, food, games, and even rides for kids clog the street.

Dolly started asking to go only a couple of days ago. She has been attending Norwood day for the last 6 years or so. At least ever since the Frame Shop/Gallery opened. On Thuresday night we talked, and she started begging to go. She actually said "You're my only hope" Hahaa!...Obi-Wan Kenobi...
Mmmmm...Ice cream from Ice Jacks! Hi there, Kathy's arm!

My favorite picture of the day. Mom is center/right in the pic. She had so much fun...I think this says it all.

Mom and me yesterday. She looks pained, but she really was having a great time. She still has a hard time getting her mood across with facial expressions. We all had a great time.

Tuesday, September 15, 2009

Dolly Walks

Visited mom today, and i got to see her walk. I also had Lesson #1 in assisting mom with her walking. It was so exciting to see the progress she has made! She did well. She's walking several feet at a clip without sitting to rest- maybe 15 feet or so. I was so proud of her.

Today, I observed and was also given the opportunity to learn the ropes a bit with guidance from Susan, mom's substitute teacher. (Susan was great today, and I think mom will enjoy working with her this week.) Next week, I will train again with John, her regular teacher who is currently on vacation.

Good job, mom! Keep up the good work.

Saturday, September 12, 2009

Silver linings

I have not been posting much lately here because, for one thing, sometimes it's no fun to post when all you have to share is one gripe after another. For another thing, when there are no new developments, posting is like publicly staring at my belly button (..or sitting through a David Lynch movie. Take your pick.) Well, Dolly's progress is dragging a post out of me today. It's been a week where some small, happy things have snuck up on me and said "Boo"! These weeks don't come too often... and early on, a good week or couple days were often followed by the opposite. Nowadays I have to stop and acknowledge it here, no matter how little the victories have been.

This week, John (mom's PT) said that mom is doing well in PT, very well. I knew that she's been using a walker with John during her appointments, but he actually said that she is a good candidate for training to walk with others. This is HUGE. He invited any family to come to train to walk with mom during her appointment. I told him I'd be there Monday.

Another thing John said was that mom is being vetted to possibly (possibly... don't want to get my hopes up too high, but POSSIBLY...) get put back on Medicare B. Backstory: mom was kicked off Medicare about a month ago for lack of making progress, and we've been paying for her PT privately for weeks now. I don't know what the "B" stands for in this level of Medicare, but I bet that it's a lesser coverage of Medicare than she has been getting. Honestly, I'm just thrilled that it's even on the table at this point. Her Medicare re pick-up window is closing (early October, unless she was to have another "event" in which case full benefits would kick back in, obviously). So, if she is becoming a candidate to go back on Medicare, that is a big thing and there is not a large window for assessment. John's away for the next week, and mom will be in PT with a substitute teacher. The plan is that he will contact us when he gets back to let us know if the Medicare B is going to happen or not.

Mom has been taking part in some social activities at the Sherrill House, or says she is, and I'm inclined to believe her. Bingo and coffee/TV hours. In previous weeks, she spent most of her time in her room and reacted very grumpily when I would ask her about taking part in some of the daily social activities provided at Sherrill House. So this is a win. I am not sure how involved she has been in the activities, but she is definitely attending them and interacting with others.

Something else I've noticed that she has been paying attention to doing some smaller things for herself now. I've seen this happen a number of times, and in an unself-concious way. What I mean by that is that, at the time of the event, she clearly was making the attempt due to her own innate desire to accomplish a specific goal (non-ego-driven) and not to just put on a show for me (ego-driven). This has been one of the broader major road-blocks in mom's recovery so to see even this teeny tiny amount of self-driven desire to accomplish a task and grasp for independence is a big thing. These are just the infinitesimal daily tasks, to you and me - things that she used to (and sometimes still does) bark at me to help her with, like moving her bed up and down via the control buttons, or putting the brake on her wheelchair or even adjusting her arm. She is also eager to show off the progress she has made with her newfound abilities: standing and general wheeling. It is impressive to me. She is definitely making progress. It's slow, and it might not keep her on Medicare, but it's still progress and should still be praised and celebrated nonetheless. There are still plenty (PLENTY) of issues we are contending with --she is still very neglectful of her right side for one thing, and there are for sure other issues I'm not touching upon here. But it's been more positive than negative this week for me, and it makes me feel sort of hopeful. I praise her, and I am thrilled about all these small victories --but I have to be really careful with the way I show her this because, for instance, I praise her for pushing her bed button up and down on her own, and the next minute, she thinks she's well enough to go home and manage all by herself. (That's a good example of life with Dolly right now.)

We will be planning Dolly's birthday dinner soon. Her birthday is September 28. I think we are going to take her out to the Summer Shack, but I have to check on their wheelchair access.

Tuesday, September 8, 2009


Dolly is an artist. She is a painter. Her whole life she has been drenched in art in one form or another.

Over the past few months, I have been trying to get her interested in things that she used to love to do pre-stroke. Many times over the last few months we have tried to get her to draw. She always says 'not now' or 'I'm not ready'. Tonight, was no different with the oppositions, except...she did draw! Even while she was drawing, she was saying that she didn't want to. But she was doing it! I told her that if she really didn't want to draw, she would have put up more of a fight like we were used to. She smirked at that and kept drawing!

This first masterpiece is for my dog Rusty. She wanted me to take the picture and hang it where Rusty sleeps. I wanted to keep it in the book with ALL the other pictures she would draw. She seemed okay with that.

She drew pictures of a goose, a rabbit, and a kangaroo. Then I asked her to write on the bottom of the pictures what the animals were. She then felt that the rabbit looked more like a cat and the kangaroo looked more like a thats what she named them. She has a very difficult time with spelling. I had to help her with the correct spelling afterward, but she wrote everything on this paper in her own hand. It was also her choice to strike out the misspellings.

After the drawing, her dinner came. Scott and I sat with her as she ate a turkey sandwich with lettuce and tomato, vanilla pudding, cranberry juice, hot tea and vanilla ice cream. Then we went for another stroll, but this time, I took the paper and pens. We sat outside on the patio and she drew a picture for Ruby and Daisy, Kathy's pugs.

What a wonderful time! It was such a pleasure to watch her enjoy drawing! She spelled Daisy wrong, but I didn't have the heart to correct her this time. Besides, it is so much closer than her previous mistakes.

On an aside note, while I was gone getting some refreshments, Dolly was deep in debate with Scott over her refusal to go to a nursing home. She actually said to him "I'd go home before I ever go to a nursing home" like it's us that are keeping her from going home. Funny thing is, as soon as I stepped out of the door to the patio, the insisting she didn't want me to know what they were talking about. I was unaware until I got in the car.

Ahh, Mom...I want that, too. I wish you knew that.

Monday, September 7, 2009

Dear ____________,

Dear ______,

I appreciate that you ask me how my mom is doing. I appreciate that you have not forgotten. That you have an interest. That you care. But please be forewarned - if you ask, I will be honest. I will try to make it brief, unless you invite a longer conversation, but I'm not going to sugar coat my reply to make things less uncomfortable for you. For me, it's always uncomfortable, but that is a daily fact of life for me now. The invisible wall is down. I tell it like it is. So, if you ask, please be sure that you are prepared for my honest answer. If you are not prepared for that, then please, don't ask. I don't want you to be made uncomfortable unless you are inviting the intrusion.


Wednesday, September 2, 2009

I'm having a moment

Indulge me. Please.

I am having a moment.

Been having this moment for the last couple of days (really longer than that, but the last couple have been the roughest). The more we do positive things for Dolly, the more she fights us. She is completely against the private caregiver we hired for her, she screamed at me for about 10 minutes today about it. She is not afraid to voice her opinion. She will yell into the phone "I don't want it! I don't need it!" over and over again. I can do nothing but remain silent during these tantrums, and let them run their course. I reason with her, asking her if she would rather stare at the wall than have someone come and interact with her. She keeps saying that she doesn't know why she can't go home. She is blaming us for not being able to go home. All her roommates go home, why can't she?

I break it down for her...repeatedly. It's the little things Mom...transferring, making a phone call...acknowledging your right side...being aware of your surroundings. But she still doesn't get it. I'm not sure she ever will 'get it'.

Tonight we had an argument on the phone about all of the above, and a very key reason why she can't go 'home'. Her home is not wheelchair accessible. This is not the reason, but it is a valid reason, so I offered it. Her doorways are not wide enough, her bathroom is tiny and would need serious renovations, as well as the stairs to get up to her floor, we would need ramps. She told me in all seriousness that she could use the cellar door. I was taken aback for a minute since I thought we were having a lucid yell fest, but she was completely serious. She said that the stairs from the cellar are easy stairs, she can manage them with a walker.

I spoke to her at 10pm tonight. She still had her dentures in. I can hear the difference in her speech when she has them in and when they are out. She has lied to me before telling me that they are out when in fact they are still in (at 11pm, 12am). I question the fibs, but always let it slide. She insists that they are out when they are not out. Tonight she fessed up. She wanted to please me by calling for an aide to help her with her teeth while I was on the phone with her, it took her 10 minutes and phone coaching to find her call button.

After the lashing I got about the private caregiver, the reasoning about why she can't go home right now, and the total reality check I tried to give her about how she is really not doing as good as she thinks she is, I made her laugh. I told her "the next time I talk to you late at night and you still have your teeth in, I'm going to put a sign above your bed that says 'I WEAR DENTURES...PLEASE MAKE SURE THAT THEY ARE OUT AND CLEANED BEFORE I GO TO BED, THANK YOU'". She laughed and laughed. I was NOT kidding.