Good weekend with Mom

Had a good weekend with Mom. Everything went well, eye looks better. I did notice Mom's weekness that Dan mentioned a few posts ago. Had to help her more than usual with the bathrooms trips. And she chose to ride instead of walk some of the time. She did rest well though. She was resting so well Sunday morning that I got a little worried. She slept late, I think until about nine. She's usually up by 6:30, 7. I kept checking on her.

Got a computer together for Maggie. It's an old one but not bad for a starter computer. the monitor is probably the best part of that deal. It looked good. One of Morris's old ones. (For what it's worth, I'm getting Charter to install a new cable to the house from the pole. That modem keeps dropping off because of a downstream problem and the outside cable looks pretty old. New one won't hurt. There won't be any charge.) I plan on being at the meeting Friday.

Vic

ELDERLAW ATTORNEY MEETING

So far, only Dan and I are going to the 3:30pm, August 31 meeting with the Elderlaw attorney. Is that correct? Jane has suggested a call-in number for those who can not attend. I am trying to get that confirmed with the attorney's office. So far, no response. Not sure if they do that sort of thing. Will advise.

Other than who is attending, please provide me with a list of questions that you would like to have answered.

Thanks.

Mom's Legal Documents

You will be receiving a CD in the mail in a couple of days with copies of some of Mom's legal documents. I wasn't sure if sending via email would bog down your systems so opted for this way. These are doc's that the eldercare attorney might need so I thought I would send along to you as well.

CD includes papers related to: house, mortgage, power of attorney, living will, divorce papers, Woodlawn cemetery maps/photos. It doesn't include Mom's will, codicils or Kenig marriage certificate since I don't have copies here in Atlanta - they are in Mom's closet in her firesafe box. In some cases there are other related doc's but I didn't copy since I didn't think the lawyer would need them. If you have any questions, I can see if there are doc's that answer the question.

Hopefully you won't have any trouble opening these. Open to suggestion re: scanning if you have any - this was my first time (with Bob's help of course).

Maggie's Computer

Just a thought. Spoke to Maggie this morning to get an update and we started talking about computers, etc. Vic and I talked about donating the computer equipment downstairs. So, Vic, is there is an entire computer set up there. We have a couple of monitors and other accessories if needed to complete the set.

If not, would anyone in the process of upgrading like to give Maggie their old computer? She just needs the basics and would really love to have it!

Eye update

I took Mom to the follow up visit today to see Dr Ballinger. He took a culture last week (Friday) - Mom has another staph infection in her right eye. Current treatment is Vancomycin every hour in the right eye only - nothing in the left eye for the time being. The next check-up is Wednesday at 9:00 AM to see if the treatment is working. I've asked Maggie to plan on taking Mom for the check-up. We may need to pick up another dose of the Vancomycin tomorrow (after 3:00 PM) or Wednesday. If we can hold out until Wednesday and nothing is pressing at work, I might meet Mom and Maggie at the doctor's office and get the meds while I'm there. This is going to be just like the last time - Dr visits every three days or so for several weeks.

Over the weekend, the treatment was Azasite and Vancomycin 4x per day in both eyes. Ballinger said it wasn't getting worse but also wasn't getting better. The Vancomycin should successfully treat this type of staph so he wants a concentrated effort on that eye. Her eye is very very red.

Mom is very weak, constantly tired and out of breath when she moves. She's down to to about 110 lbs now but her legs and feet look much better. We elected to not give her the Metalzone today. She sleeps most of the day now and physically needs help more often. Her incontinence seems to be getting worse but it may be more that she forgets she needs to go and waits too long. You have to remind her to go.

We need to seriously reconsider the stair chair lift. In my opinion, it's long overdue. It's unsafe for her to be moving up and down those stairs and a burden for her that she should not have to bare. You all decide and take action please.

Dan

Mom update

I spoke with Pugh's office and he has recommended lowering the Metalazone to 3x per week - Monday, Wednesday, and Friday. I've changed the pill boxes and left a note for Maggie. I'll call her in the morning also to let her know.

Dan

Woodlawn Memorial Update

OK, we're good to go. Eileen and I talked in more detail about how we'd pay for plot, etc. We'll be making a $650 down payment and paying the rest over 60 months (no finance charge, just flat amount). I sent in the check and the signed contract this afternoon.

Please feel free to contact Jamie Westbrooks, Family Service Counselor, at the cemetery if you would like to go to see the actual spot. He was able to find a nice one right under one of the trees, which is perfect for someone like Mom who has always had a special bond with trees. We can actually swap this spot for another one if we don't wait too long to do so. We can also pay a bit extra and have a tree planted (in the area).

Part of this arrangement is for a bronze marker. For the base price, we can request 6 words of endearment in addition to Mom's name and dates. For example: Loving wife, mother, grandmother and friend. I'll let the "wordsmiths" of the family come up with the best option here. We can use several more words (not sure of actual limit) for add'l charge.

If you have any questions, just let me know. You can also call Jamie at (864) 244-4462. He is very nice and I'm sure would be happy to answer any questions you might have about the entire process.

Eye update

Tom got another eye appt set up for today after seeing Mom's eye deteriorate over the weekend and he had Maggie take her in today for a check up. Dr. Myers referred her to Ballenger - the cornea specialist who treated her when she had the staph infection. Maggie will take her tomorrow and Tom will meet them there.

Let's not panic and get Gaucher involved when he doesn't need to be - there is nothing he can do. Pugh is in the driver seat regulating medications and Gaucher has 100% confidence in him per previous discussions. I called Pugh's office late Friday and am waiting for return phone call to discuss the need (or not) to continue the current extra doses of Metalazone. Mom's legs look much better and her weight is down from 118 to about 113, +/- a pound or two. It's prudent at this point to discuss backing off the Metalazone so that we don't blow out her kidney. Pugh needs to make the call. I'll find out what he says and advise later.

Dan

Mom Update

Eye: Talked to Maggie this morning. She took Mom to eye doctor today. Since Mom's eye is not clearing up, Dr has referred her back to Dr. Ballinger, the specialist who saw Mom earlier this year. He has also taken her off all drops but one until Dr. Ballinger gets a chance to review her case - concerned about "additives" and/or Mom's reaction to meds. Maggie will be taking Mom to Dr. Ballinger tomorrow at 9:30 so we'll have more info then. I'll plan to call Dr. Ballinger after the appt to get direct input.

Cardio: Mom's legs are less swollen, bleeding has stopped and sore is healing, per Maggie. I spoke to Dr. Gaucher's assistant this morning. She gave me the same information re: echo that Maggie had rec'd last week. Mom's heart muscle is weak but stable, essentially the same as the last echo done on 6/07/06 at 20 - 25% (45 - 60% is normal, not 100%).

Also, passed on the info re: swelling, oozing and bleeding legs as well as new dosage for metalactone (not on Mom's chart as of today). Nurse said with all the diuretics (I think 3 of Mom's meds are such) she would expect Mom to be "worn out" and running to the bathroom a lot. She recommended monitoring Mom's fluid intake and not let her "drink sweet tea all day" (a Southern thing). Also monitor her sodium intake (I told her that is not possible). She said just do the best we can. She will pass this info on to Dr. Gaucher and let us know if he wants to see Mom before her Sept pacemaker appt (she didn't expect he would, particularly since her legs look better today).

Cemetery Plot: Lastly, Jamie Westbrooks called this morning and said he found a "very nice spot, right next to a tree", which is hard to find in the area we were looking at. From the comments I have received, I don't think there are any objections to moving forward with the cemetery plot and I'm also assuming we will only consider the one spot for Mom. I am going to go ahead with the arrangements unless there are any objections so please let me know if you have any.

All for now.

Mom's Echo

Maggie just called. A woman called from the doctor's office with the echo report - "Mom's heart is still weak and all other things are the same." I think I will call tomorrow to get more information, unless anyone else would like first-hand info. Just let me know if you do, that's fine.

Mom's Eye

Just an update. I've included the prior email content just to have in one place.

Maggie took Mom to the eye doctor. She said she was happy to do it, "Praise the Lord", "it was not at all a problem", "they're just sitting there any way". That's good news.

Doctor Caldwell(sp?) has changed Mom's meds. Discontinue new drops, continue with prior drops (in frig, I forget the name) 4 times/day, Genteal gel 4times/day, bacterium ointment only at bedtime (no longer in morning) and Optiva drops as needed. Keep eye clean as we can.

Dr's office will be calling Maggie with appt time for next Monday. Maggie says she is happy to take Mom.

Also, Mom's leg looks better today and is not weeping.

Also, I called the house this morning thinking they would have been back from the appt but got the answering machine. Somehow the "welcome message" has been deleted and all you hear is garbled sounds. Could someone re-record the message?




Prior:
"I left the following note on the blog last night but thought I would copy and resend this morning since there were no comments when I checked this morning and I'm not sure if anyone saw it.

I called the doctor's office again last night and talked to Dr. Caldwell who was on-call. He agreed to suspend the new med and asked that Mom come in this morning to see him. We now have a 10:00 appt to see him. Maggie will be taking Mom. She says she has no problem doing it. If Dan or Tom would rather go, just contact Maggie to make that change.

"Maggie called late this afternoon to tell me that Mom's eye is much worse today - much redder. Since it might be caused by the new eye drops I told her to discontinue use of that for tonight (only one more round any way) and that I would call the doctor's office.

Called and left a detailed message and asked for an appt for tomorrow (Thurs). I'll call again in the morning to make sure we get one. Maggie said she would have no problem taking Mom so, unless anyone has an objection, that is what we'll do. Please let me know if you think we should take another approach."

Mom Weekend Update

We had a good weekend with Mom. She seemed a bit weaker and more frail but no noticeable mental deterioration and in pretty good spirits. She has been asking to be "wheeled" from kitchen to bedroom more often.

Morris came for lunch on Saturday and then again for dinner. Also came over over Sunday morning and Monday afternoon. Two eucharistic ministers came Sunday morning - Jackie Smith and Francis Steele - to bring Mom communion, which she seemed to appreciate. They will be coming every two weeks unless Mom decides she would like to change that schedule and see them more or less often. Jackie and Francis also gave me three contacts from the church who can help us with various things, legal, hospice, etc. They all work in the community as well as give presentations at the church from time to time; also participate in outreach. I will call each of them to find out more about what they might do for us, now or in the future.

We took Mom for her echo cardiogram - a very interesting process, unbelievable what you can see on the screen. Results will be reviewed by Gaucher and then communicated to us; no input from the person doing the procedure. Mom's legs continue to be very swollen, more so as the day progresses. The callus on her foot is also painful. Monday morning Mom developed another bleeding/oozing spot on her right leg while we were at the eye doctor. It was pretty heavy at first but then stopped. When we got home Maggie put a bandage on it and things seemed to be OK when we left later in the afternoon (about 5). She was planning to take off the bandage today to let it form a scab but when I talked to her earlier she said that it continued to drain last night while Mom was asleep, so much so that it bled (a clear pinkish fluid) through the bandage and onto the sheets and pad. Maggie has changed the dressing several times today and will be checking it before she leaves to see if she can leave it off tonight. Mom's new meds are helping her lose weight(now 115) but the legs are still swollen. Last Friday I had called Pugh's office to see if they had communicated anything to Gaucher's office about the increase in her metalactone (?) and they had not. According to Terry, they normally don't communicate things like that. I asked her to do it this time since Gaucher will be reviewing her echo and will hopefully know about the med change. The echo person could not verify if that had been communicated. Don't know if it's time to take her to see Pugh again. Once Gaucher reviews the echo and knows about the meds he might want to see her also.

Mom's eye has not gotten worse but it hasn't gotten much better either. Still very red. Dr. Shelly thought that while the vancomycin was helping it might also be an add'l irritant so he gave us a semi-replacement med - vigamox - to interchange with vancomycin. In other words, still use drops every two hours but alternate between the two. Really need to keep the eye clean also. Maggie put a small chart on the frig for other caregivers. If things don't improve, they'll want to do a culture. Also want to see her in a week or two. I did not schedule an appt since I thought it would be better for whoever would be taking her to do that for their convenience. We could consider having Maggie take her and then call the doctor later.

Bob and I also visited the cemetery again on Monday and talked more specifically about the options. There is availability in a number of areas. In order to narrow choices, we should first decide if anyone in the family has an interest in purchasing a plot alongside Mom now. If not, I would suggest we go ahead and get this decision behind us.

Bob and I liked an area within the cemetery called Garden of Eternity. There is ample room for others. If we decide we only want one plot, then any number of places within the cemetery are available (usually extra plots not used by other family plots).

The costs are as follows:

Single Plot: $2,995 (less $500, if we commit by the end of the month)
Flat, ground-level marker: $2,580 (Bronze, granite, state fee, install)
Open/Close Process: $1,095
Other/Taxes: $218
Total: $6,389

We would make a 10% down payment and pay remaining over 60 months (full balance would be due at Mom's passing if not yet paid in full). We can also make our final plot selection following our commitment as long as we don't wait too long. Jamie Westbrooks is our contact (864-244-4622) and I would recommend any local folks contact him to see exactly where the Garden of Eternity is located within the cemetery and do a walk-through of available plots. If you have another preference after that, just let us know. If you'd rather Bob and I finalize that part without everyone doing the walk-through, we'd be happy to do that. I told Jamie we'd like a tranquil, pretty spot, near a tree and away from any traffic, noise or ugly views. Please let me know your thoughts so we can get this part behind us.

I think that's it for now.

NEW SCHEDULE and QUESTION

All - Please take a look at your personal e-mail accounts. I have attached a new Schedule for September, October, November, December. Not all of us are on the Blog and I need answers to some questions.

Thanks.

Eileen

Doctors appts next week

Sorry but something came up at work so I can't take Mom on the 7th to the eye doctor. I'm hiring a new employee and HR set up interviews on Mon, Tue, & wed of next week. I just found out late today.

To add to the complication, I found out today from Maggie that Mom had an echo appointment with Gaucher at 9:30 tomorrow that I think we all we unaware of. I thought I could take care of that but a meeting was called late today for the AM that I have to be at so I canceled the Gaucher appointment tomorrow and rescheduled for Monday morning at 8:30AM. I guess our options are to cancel, reschedule, or have Maggie take her in if no one else can cover.

The appointment needs at the moment are:

Monday 6 Aug - 8:30 AM Dr Gaucher office for echo test

Tuesday 7 Aug - 9:45 AM Dr Shelly for eye check up

I'm unable to handle either one. Can anyone else handle these appointments? If not, I'll cancel and reschedule.

I cancelled the follow up Gaucher appointment on the 8th. He agreed to call us with the results of the echo. I've taken Mom to these follow up visits after the echo test and it's a waste of time, quite frankly. It's standard practice for them to schedule a follow up with Gaucher so we will have to request they call us with the results each time this echo test comes up.

Can anyone cover the appointments?

Dan

Spoke with Pugh's office yesterday concerning swelling and skin scrape on leg. It's minor but with the swelling it's been oozing water and sometimes blood. Maggie had been bandaging it but I took that off over the weekend to get air to it to allow it to scab over. As of last night, it is beginning to do just that. Pugh's office confirmed this to be the best course of action. It needs to scab over to heal.

Mom was not responding to the increased Metalazone treatments until yesterday which is unusual that it took so long. She dropped 4 pounds as of yesterday which is a good sign that it may finally be kicking in. Pugh wants us to continue treatment for another week then consult again to determine need to take her in to see him. She is now (has been for 2 weeks now) getting the Metalazone 4x per week (Sun - Tue - Thu - Sat). As she drops weight, we need to make some judgement calls daily on the need to cancel or shift a treatment a day or more depending on weight loss. Expect extra, sometimes unproductive, trips to the bathroom with the increased Metalazone treatments.


Dan