Tuesday, September 20, 2011

Nice, a Long Time Between Posts!

That's GOTTA be good news!

And it is.

Stability has been achieved. In Dad's words, "Everybody's been telling me that recovery is going to be a long, slow process, and I've finally learned to accept that."

The good news is that I think he sees recovery as going to work. So he's doing his walks up and down the corridors in the building, going where Mom has never gone before! And she went on his walk the other day.

I called on the phone Sunday. Dad answered and I asked how he was doing.

"Well, I guess I'm doing OK...." he answered.

I was taken aback. I think it was the first time he didn't respond with a negative statement about his condition and I think that's huge. Susan and I went by and picked them up and we went out for lunch. Sevy's was not open so we tried Crossroads Diner, which is owned/run by Tom and Karen Fleming. Tom is a chef who has been active in the local food community and worked with Mom and Dad on some of their AWIF projects. They were delighted to see Dad and it was great for him to see them. Tom sat down and visited for a while which was great. It was Dad's second meal out of the apartment since going home and his first 'social' engagement.

Mom had an appointment with Dr. Hardee yesterday and left Dad by himself for a bit, which is another big step. She seems to be regaining a little of her strength back.

They got a call back from Dr. Chen's office (she's the neurologist.) Nothing unusual showed up on the MRI (other than aneurysm clips.) It was a nurse making the call, so her message was pretty much scripted. Maybe we'll learn a little more after he has his next appointment. BUT NOTHING MUCH SHOWED UP.

And that's great news.

Monday, September 12, 2011

Valium Trumps MRI Anxiety!

Now that's a headline.

But it's true. Dad took a half a pill about an hour before the MRI and went through with no problems. He was jittery and anxious when I got there to pick them up, but that was smoothed over! I met Melody and she does fit in nicely. It's all love and hugs at this point, I hope it continues.

The MRI was uneventful, except that evidently Dad has a couple of aneurysm clips in his brain.


Mystery Clips Found In Brain!

Now that's a headline.

The MRI tech mentioned the clips to Dad as if they're no big deal, but they certainly come as a surprise to all concerned. Our best guess is that Dr. Jackson put them in to control bleeding when he did the cranial biopsy. Dad certainly doesn't remember anyone else digging around inside his skull! On the other hand, it's an important thing to know, especially if it's stainless steel. Nowadays most clips are titanium, which do not cause problems with MRI's. Does anyone remember anything about this? Maybe the tech got the pictures mixed up? Mom needs to ask Dr. Chen what she can tell about the clips from the new images. Dr. Chen is supposed to call with the results in a couple of days.

We went to lunch afterwards. Dad wanted an enchilada so we went to El Fenix. First Mexican food since before the operation. Tasted great, he ate every bite!

Sunday, September 11, 2011

On Any Given Sunday

Boy, when Mom and Dad finally go back to church they're going to need to get a classroom, get all their friends seated and hold a news conference! Today was the return of the choir after a month off, and I had to run a gauntlet of people asking about the parents. Dad said he dreads going back for just that reason, but he said it with a laugh that was good to hear.

I had to talk hard to get Mom to give me a grocery list, but she did so I made a Central Market run and took it by. It seemed to be a normal day at the apt. Dad's complaining less and seems more resigned to the fact that recovery is going to be long and slow and hard work. I think that means he's feeling better! Mom seems willing to just let things go more slowly. (Maybe I just got there at the right time?!?)

We put down a new strip of adhesive foam under the living room rug to keep it from moving on top of the carpet. It was particularly loose in front of Dad's chair and as he gets more mobile, it is becoming a bigger hazard. The job took moving a lot of furniture, that is a crowded room. Mom got down on the floor to help trim it and get it down flat. She's surprisingly mobile and flexible. As long as she's got her oxygen she's OK!!!

Dad goes back to the Neurologist for MRI's tomorrow to get the lowdown on stroke activity. Mom seemed surprised that I was planning on going. I assured her that it was not because I thought she couldn't do it. She always seems to think I have more important things to do.

(I don't think so!)

Thursday, September 8, 2011

A New Doctor, a New Disease

""The diagnosis of Parkinson's is largely determined by response to the medication. Which is a rather backwards way of arriving at a diagnosis. There are a number of different cause for parkinsonian tremors, but there are certain medications to which only Parkinson's responds."

Those were the words of Dr. Connie Chen, the neurologist we visited today. Dr. Chen is in the same practice as was Dr. Marder, whom we all remember from Dad's last neurological fling, now what, 10, 12 years ago? Dr. Chen is a young woman, Johns-Hopkins educated who joined Neurology Texas  " serving as the Hospitalist for the practice in order to focus on her primary interests—neurocritical care and stroke." We all liked her a lot. She is quick to listen, very direct and very communicative about what she is thinking. And she has a vintage Godzilla movie poster in her office. She says it belongs to her office-mate, but that she very much approves.

She said Dad's long time tremor in his arm is a parkinsonian tremor. His tremor(s) were aggravated by the trauma of the valve failure, the surgery and apparent stroke, hence the severe tremors in his arm and leg. When he went back in the hospital last weekend two medications were prescribed: Primidone and Ropinirol. Primidone is a general anticonvulsant which reduces tremor or seizure. It works by controlling abnormal electrical releases in the brain. Primidone is not for Parkinsons. Ropinirole is.

"Parkinson's disease occurs when the nerve cells in the brain that make dopamine are slowly destroyed." Ropinirole is a "dopamine agonist" which "stimulates the parts of the human brain influenced by dopamine. In effect, the brain is tricked into thinking it is receiving the dopamine it needs."  Ropinirole is designed for Parkinson's. Dad has responded to treatment.

Dr. Chen said that Dad's PD appears to have been on a slow track. How the traumatic events of the last two months will affect that track remains to be seen. Again, she reiterated that Dad is in good physical health. He has good muscular strength and motor control on both sides of his body, blood pressure's good and the tires fair. And some of the aspects of his health that concern us are the normal effects of significant trauma on an 86 year old man.

Treatment: I quote the from Dr. Chen's discharge notes, "small increase in ropinirole to 0.25mg per day. Watch for side effects: nausea, sleepiness, hallucinations. I would rather undertreat than overtreat in your situation. Let's increase your medications only if your fine motor treatment is servely affected."

On the stroke front: she wants to "continue the stroke work-up with MRI of brain and MRA of head and neck. I suspect it will show us older small strokes.... See me in 6-8 weeks. If you perceive more cognitive problems that are worsening, then please let me know." The MRI is scheduled for next Monday.

I know the diagnosis depressed Dad even further. When she asked about hallucinations, he said he has "a lot of dark thoughts about his condition especially thinking about his future." Dr. Chen said, "that's not hallucination, that's depression."

We talked about his depression while Dr. Chen was out of the office on a phone call. I told him that I thought he was still in shock. He went into all of this thinking that he was a relatively healthy man and that's still his self-image. Except in the last month he's had heart disease, heart surgery, strokes and now Parkinson's Disease. I have to admit, that's a bit much! Denial, Anger, Depression, Acceptance. Stages of Grief. I cycled through several times during my PKD period and wrote about it in my blog. I suggested he might think about some counseling. I would hope that he could talk to Patty Willette and she could help steer him into some help.

I asked Mom how she was handling her cancer. She said she's been ready for it a long time and it's had a designated place on the shelf. She thought for a while she might dodge it, but when it was diagnosed, she just put it where it was supposed to go. I suggested she recognized it by the angle of its elbow. We all smiled. We needed to.

Rough day, rough news. I don't think anyone saw this diagnosis coming.

Wednesday, September 7, 2011

Wednesday Late Night

Mom called tonight after I got off work to report.

Melody did come today and Mom talked to her about getting more time. It looks like Melody just started working for a man every other Monday. They're going to see about Mom locking down that day and possibly more days in the future. Not enough in my opinion. I'm still very concerned about getting her through the pneumonitis, but she didn't want to dwell on that possibility in our conversation. I think she knows it's there, but she's still hopeful that it won't happen.

Dad had a good appointment with Wiggans today. He changed Dad from Xanax, which Dad says makes him crazy, to Zoloft. Maybe the new drug will be gentler. Zoloft certainly has been good for Susan. Everything else looks pretty good. The best thing is that Wiggans called a neurologist himself to set up an appointment and it's for Thursday (tomorrow) at 1 pm. The woman is in the same group that Dr. Marder was a part of.

I might or might not be able to go with them to the appointment. (Mom thinks that it's because I don't think she can do it, but that's not the case. I don't think I'll get the straight story if I don't go myself.) Also, I've got some lightweight barbells for Dad to use for his arm exercises.  (Platt said for him to start pumping iron.) I also picked up a Pecos melon tonight at the Central Market, so I've got to go by and see them at some point tomorrow.

That's it for now. The bad news is that they miss their first Symphony tomorrow night, but Susan and I are going to try and get there and stay awake. Wish us luck!

Wednesday morning conversation

I called Mother this morning for our usual Wednesday chat. She sounds amazingly cheerful; I always suspect this is for my benefit, but it does sound like she has the best possible attitude. Melody from Senior Helpers was back today—Mother really likes her and wants to give her a chance to provide continuity. I hope Melody's health remains steady so she can come every time and I urged Mother to take your advice, Dave, and add another day while it's available.
She said Daddy was breathless again this morning, but better after his walk. Still, she's glad they have another appointment with Wiggans this afternoon.
She did say she got Dad's meds mixed up again, the warfarin, so there is some cause for concern there.
We talked again about the Forum—it would be assisted living, so very expensive. For now, we just need to make sure that Mother and Daddy have enough help at home, I guess.
She got a big kick out of the certificate she received for completing her radiation. Pretty funny.
Thanks to Adrian for helping out. And, always, you and Susan and Helen. Please, please let me know if there's a single thing I can do from here. Love.

Tuesday, September 6, 2011

Last Treatment Tuesday

That's what today is.

Last Treatment Tuesday.

Adrian is coming to stay with Dad and Annie is taking Mom for the last Hyperfractionated Stereotactical Radiosurgery today. The last bits of her little stage 1 multilobular tumor is getting zapped. Kind of momentous. The treatment has been so much easier than I would imagine any of us thought it could possibly be. Mom is terribly fatigued, but has been courageous and pretty level-headed through it all. She's making a list of end-of-treatment questions (like, "What happens next???") to ask before she leaves.

When we talked this morning they were waiting for a visit from Dad's nurse whom they don't like. (They call her Nurse Ratched.) Mom was also going to have a long talk with Senior Helpers over the lack of continuity. I summarized our visit at the Forum (see last post) and we discussed the fact that they were going to need increasing care as time goes on. For that to work, they're going to have to have a regular caretaker who knows the drill. Senior Helpers has provided a different helper each time, so everything has to be explained each visit. That's a double whammy for Mom: frustrating and exhausting!

Apparently the neurologist Dad saw in the hospital doesn't have a regular office. That's why it's been difficult to see him. The only number they had at the hospital was his pager and he was off duty and not on-call at the time Mom was calling. They are going to ask Wiggans for a referral to a new neurologist when they see him on Wednesday. Mom wants to see a neurologist herself about the neuropathy in her feet.

So we'll know more tomorrow!

Monday, September 5, 2011

As of Sunday...

Susan and I went by to deliver milk and bananas that Mom had asked Susan to bring by. We arrived around 2pm, Dad was eating chicken noodle soup and a grilled ham and cheese sandwich. Mom was eating yogurt and was moving slow, but things seemed stable.

Dr. Wiggans has reduced a couple more of Dad's meds and is talking to Musselman about others. He seems convinced that over-medication is still part of Dad's lethargy. I'm hopeful that he's right, but Dad just doesn't seem to have a firm grip on things. He knows it and that's why he has a hard time realizing he's getting better. I'm anxious to hear what the neurologist has to say. I'll talk to Mom the morning and help get the appointment straightened out. I wish she had said something about it to me yesterday!

She mentioned the Forum to Susan while we were there. We decided not to go to the movies and paid a visit to the Forum instead. Very impressive. Tries very hard to be an American Hotel for elderly well-to-do. Biggest complaint we've heard was from a friend of Marilyn's: if you're not in the right building it's a helluva long walk to the dining room. And she was right. The place was very quiet. The single bedroom unit we saw is quite large, but boy, would they ever have to strip down to move in! (Boy, the overstuffed furniture in the model-room looked so-o-o comfortable! Dad would have NO TROUBLE SLEEPING.)

But that was independent living. And that has the same problems they have now. They need help with showers, meds, basic support stuff, and they're going to need help with that even more when (if) Mom develops the pneumonitis that's the probable side effect of her treatment. (And if that doesn't clear up easily will it develop into pneumonia?)

So, what are the options?

1)   Stay at the Renaissance, but radically increase the amount of in-home care. It's possible that Alice, who takes care of Marilyn would be able to provide someone. Of course there's not a lot of extra space to have an outsider in the apartment all the time.

2)   Independent Living at the Forum or equivalent.  All meals are available in the hotel-like dining room living as needed. It would be living on the American Plan. There is a cocktail hour with wine and beer before dinner. The dining room was set for a Labor Day Buffet when we were there. I bet a lot of the residents dress for dinner! The environs is walker friendly. Our host (the food-bev director, a nice young man from New York) estimated 60-70% of the population use walkers.

It's very difficult for their contemporaries to visit them at the Renaissance, especially since the Renaissance is being very nasty about parking by the bike rack. The only guest parking is upstairs on the top level, requiring their guests negotiate a full flight of stairs. Not exactly handicap friendly.

The drawback with Independent Living is that it is just that: independent living, self-care in an apartment albeit in a 'senior friendly' environment. Mom and Dad are not currently independent. They need help and would need the same amount of in-home care as they would at the apt. Senior help is available through The Forum's Ambassador Program at an additional hourly rate, much like they currently get through Tammi.

4.) Assisted Living provides round the clock help, assistance for things like medication, bathing, feeding, including assistance to and from the dining area. Assisted living residents live in a different building from the independent residents.

Whether the Forum is the facility or not, the questions would be the same. The Rectors faced the same questions and chose to stay in the house. Susan and Meg have provided the nighttime care for a long time now.

The future is daunting!

Saturday, September 3, 2011

Telephone Update

Talked to Mother yesterday afternoon: she had not had a great day. The last person from Senior Helpers, the one she liked, called in sick yesterday and yet another person was sent out. So far, the same person hasn't come twice, so they start from zero every time.

Dr. Wiggins wanted dad to see the neurologist again and Mother tried to make an appointment but the number she has is for the hospital, and when she asks for the neurologist, they keep connecting her to another neurology office with which this doctor is not affiliated.

Dad took a long walk yesterday, so he is improving but doesn't seem to feel that he is.

She was exhausted. Dad was asleep.

I raised the question of The Forum with her; evidently, they signed a two year lease for the place they're in now, so there is the question of how/whether they could get out of that. Helen, you probably know about this? I called the Forum yesterday to start the conversation about the veteran benefits; the person is supposed to call me back.

Glen and I are planning to come to Dallas the weekend of October 8.