Sunday, December 27, 2009

It Was A Great Christmas!

We made it through another one!  Mom is doing well and she got to spend time enjoying her favorite pastime, visiting with her family.  The burns from the radiation are gone and she is experiencing NO symptoms or side effects of the cancer or its treatment.  What a great Christmas present!

During the past few weeks Mom has been able to enjoy several Holiday activities.  There was a party at Southampton Estates for the residents and their families with live entertainment and desserts.  Lori and Mo and I were able to join her for that.  There was some shopping with Maureen, a concert with Coleen, another concert with Lori and me, a bus trip with the other residents at Southampton to a huge drive-thru Christmas display on a farm in Bucks County, a couple of Christmas card writing sessions, phone calls from friends and relatives, and a surprise visit last week from Barbara courtesy of Barb's duaghter-in-law, Theresa (a genuine Angel!).

On Christmas eve Mom went to mass at St. Anthony's where Coleen sings in the choir.  On Christmas day Mom came over to our house and joined about 15 others for for a wonderful gathering which included all of her kids (except Pat and family), Gene and Jean, and some of Lori's family.  A great time was had by all.

We sent about 2 dozen Christmas cards which was about what she could handle in two card-writing sessions.  I think she enjoyed doing that.  I'm sure she'd love send more greetings to all of you and she certainly has you all in her heart.

We hope you all had a wonderful Holiday and we wish the best in the coming year.  Thanks so much for your cards, calls, and visits.  They mean an awful lot to Mom and the rest of us.
God Bless!

Saturday, December 5, 2009

Radiation Complete

I'm sorry for the lack of posts recently.  In this case 'no news is good news' applies.  Mom got through her 20 radiation treatments with minimal side effects.  She has a burned area on her back about 4" in diameter and a smaller, less severe area on her chest.  It itches her quite a bit, but isn't painful.  Some hydrocortisone cream and moisturizer should help that heal completely in a couple of weeks.

She has been in good spirits lately and has enjoyed lots of time with her family.  Lori and I hosted Lori's family and Mom and Maureen for Thanksgiving and the rest of the Faddens on Saturday.  Mom came over the Tuesday before to help bake pies.  No one makes a pie crust like hers!  She has trouble remembering ingredients and quantities but once she started with the rolling pin, she was right on...like riding a bike.

She seems to be getting along well at Southampton Estates but she often asks about going 'home'.  It's tough for all of us but she doesn't dwell on it and she doesn't complain.  She's always happy for company or a phone call even though a little while later she'll likely forget it.  At this point her deficits all seem to revolve around recall of more recent events.  She recognizes faces and voices of her family and friends without a problem.

She's gotten many cards from friends and relatives and they make her happy.  Unfortunately, she's not given to responding these days.  Perhaps one of us can sit with her some afternoon and we can get a few Christmas cards out.

Thank you all for the calls, cards and emails to Mom and to the rest of us.  They are greatly appreciated.  Peace and good health to you this Holiday season.

Saturday, October 31, 2009

Starting Radiation

Mom starts her daily treatments on Monday.  She had her initial treatment "simulation" last Monday.  The technicians said she was very cooperative and was able to lie still as long as was necessary.  The radiation oncologist is confident that the size and nature of the tumor make it very amenable to this somewhat abbreviated course of radiation.  She will have about 20 treatments instead of the more typical 30 or so.

Mom's appetite has been good and she's putting on weight.  Unfortunately, some of the weight is fluid retention and we're not clear on what might be causing that.  I am hoping to get a visit in with the cardiologist in the next week or two.

Things are going pretty well at Southampton Estates.  She seems to be adjusting fairly well but it's hard to say if she's really happy there.  She does engage in some of the activities but the majority of the residents in her section are not as high functioning.  We'd like to get her into activities with the residents of the assisted living section but the psychologist feels that those folks may quickly tire of Mom's memory problems and she would be left out most of the time.  Sadly, Mom is in a sort of a gray area in terms of her cognitive abilities.  For now it appears unlikely that she'll be moving again soon.  That may change if a bed opens up in a facility that's closer to her children.  She will have a phone starting Monday or Tuesday.  She spends a lot of time out of the room so reaching her may be a challenge.  I'm not sure if we'll get an answering machine.  We'll see how things go.  Her new number will be 215-396-8579.

Aunt Ginny and Uncle Joe were in on Thursday for a visit and took Mom out to lunch.  It went well and Mom seemed to enjoy the visit although I wouldn't say she was in her best form.  Her level of perkiness seems to vary quite a bit and there's little to account for it except the unpredictable nature of Alzheimer's Disease.

I think the staff begins to get the residents ready for bed shortly after dinner so Mom tells me she hasn't seen much of the Phillies.  Hopefully she'll see some this weekend. GO PHILLIES!!

Monday, October 19, 2009

Cardiac Ablation

Mom had her heart procedure today. (I'm with her now at the hospital)
Several weeks ago, while in the hospital, Mom had an episode of an excessively rapid heart rate.  This type of rhythm disturbance can be dangerous, especially if it continues for a long period.  The EKG at the time indicated a 'short circuit' that is typically very amenable to a cardiac ablation procedure.  In this procedure the Electrophysiologist (cardiology sub-specialty) uses special catheters to do an EKG inside of the heart to map the minute electrical pathways.  He attempts to stimulate the heart with small electrical impulses to induce the problem rhythm.  When he has induced the 'bad' rhythm he locates the precise area of causing the problem.  He then uses another catheter with a tiny microwave tip to burn (ablate) the problem area, thus cutting off the errant electrical pathway.  It is typically a very successful and permanent treatment for this particular rhythm problem.

During the procedure today however, the doctor was unable to induce the problem rhythm.  He tried for quite a while but the rhythm remained normal.  Since the rhythm couldn't be induced, nothing further could be done.  What this means is that Mom probably has a high threshold for going in to this rhythm and that treating her with the medications that she is already taking will likely be adequate.  We believe that she may have had some episodes of this in the past but they have been self-limiting.  The doctor feels that this all means that she'll likely do well with her current treatment and there is nothing more to be done other than possibly tweaking medication doses.

Since he didn't do the ablation, Mom can go home this afternoon.  (We were anticipating an overnight stay.)  Right now she's groggy from the sedation but is fine otherwise.

We will be working on getting phone service hooked up this week so look for more on that later.

Mo will be bringing Mom home this afternoon.  I will be heading to the ball park this evening to bring extra good luck to the Phitin' Phils.  Hopefully, Mom will be watching for me on TV!

Mom says "Hi!" to everyone.  Thanks for stopping by.

Friday, October 9, 2009

Mailing Address

Southampton Estates
Sunshine Gardens 119-D
238 Street Rd.
Southampton, PA 18966

Thursday, October 8, 2009

A Little Sluggish Lately?

I got a call from the nurse at SE (Souhampton Estates) this morning.  Here is the update.  

All of us had been noticing a bit of a decline in energy over the past week or so.  Mom's getting a little more short of breath, and yesterday I noticed significant swelling in her legs.  She's also had a marked weight gain over the past week, about 10 pounds.  The doctor came in to see her while I was there and they ordered some tests which were done yesterday afternoon.  Bottom line: It appears that Mom is retaining fluid and the likely culprit is the medication she is on to stimulate her appetite.  The medication is now discontinued.  A diuretic was prescribed and hopefully things will get back to normal.  A chest x-ray, EKG and blood work were all good and an ultrasound of her legs did not show evidence of blood clots, a possible side effect of said medication.  For now we'll give the diuretic a chance to work.  Once she sheds the excess fluid her breathing and energy level should get back to where they were.  The staff will be monitoring her weight and leg swelling more frequently.
Another bump in the road.

Wednesday, October 7, 2009

Radiation Consultation

This morning I took Mom to Holy Redeemer to see the radiation oncologist.  After reviewing the various test results (CT scans, PET scan) he suggested a treatment regimen consisting of 20 'conventional' radiation treatments over four weeks.  The treatments would be daily and take about 10-15 minutes each.  We had hope that she would be a candidate for a newer technology called Cyberknife or Gammaknife which are also radiation treatments but are delivered by multiple highly focused beams.  The advantage is that it can be accomplished in 3-4 visits over two weeks.  Unfortunately the tumor is too close to some major blood vessels and there is risk of damaging the vessels with this type of radiation.  The doctor feels that due to the size and location of the tumor she will likely not have severe side effects from the 'conventional' radiation.

The proposed treatment is the least toxic and lowest risk of those we've explored.  We will discuss all of this with Mom and hopefully come to the right decision for her.

The cardiac procedure (ablation) to correct the rhythm problem is scheduled for Oct. 19.  She will be in the hospital overnight following the procedure.  The radiation could possibly start the following week.

Mom seems to be adjusting to her new environment.  The staff reports that she is interacting more with some of the other residents.  There are a few that are functioning on a higher level cognitively.  We are hoping that she can be placed in an assisted living section that has exit monitors so that she'll have a little more independence and more interaction with folks on a similar functioning level.  We've had her out to dinner a couple of times and gone for several walks around the grounds at Southampton.  She enjoys being outside but complains that the trees and bushes along the walking don't have identification tags.  She must think she's at an arboretum (it does look like one)!  We're still in a holding pattern on the phone in her room.  As soon as we know something we'll share it here.

All of us have really had our hands full cleaning out two apartments, packing, moving, storing and cleaning all while spending time with Mom, going to the doctor, meeting with the staff at Southampton and squeezing in our own day to day stuff.  The time spent on the phone with each other, doctors' offices, concerned friends and family and countless others is staggering.  We hope that this forum helps to keep all of you informed.  We apologize for not always returning calls or spending the time on the phone that we might like to under different circumstances.

Thanks for checking in and for all of your support.  It really means a lot to all of us.  Don't forget the 'comments' section under each post.  You're welcome to post questions (or comments) and I check it regularly.  Email also works well (click 'view my complete profile' under 'About Me')

Good night.

Tuesday, September 29, 2009

Another New Home

Since last Thursday Mom has been at Southampton Estates, a sister community to Gwynedd Estates.  The secure area where she's staying is primarily used for residents whose needs are somewhat greater than Mom's.  We're hoping that after an evaluation period the staff will deem her suitable for an apartment in an assisted living section designed to prevent wandering of the residents.  This would be sort of a hybrid of assited living and a totally secured area.

The section she is in now is all semi-private rooms, a big adjustment for all of us.  She doesn't seem to mind but she has never been one to complain.  She has a roommate who sleeps most of the time.  She's continuing to eat well.  We took her out to dinner Sunday night and she had good time.  She got to see all of her children this weekend.  That always lifts her spirits.

On the medical front, everything is stable.  We're awaiting a consultation with the radiation doctor to determine a course of action.

For the time being, Mom doesn't have a phone to receive incoming calls.  We're holding off the hassle of dealing with Verizon to move the phone service until we have a better idea of where she'll be.  I'm sure an arrangement could be made to speak with her by one of our cell phones or by the phone at the nurse's desk.  Contact one of us for details.

Have a great day!

Wednesday, September 23, 2009

A Not-so-good Day

Mom has been feeling pretty well and has been eating very well.  The PET scan went well yesterday and the results don't indicate any spread of the cancer.  We'll meet with a radiation oncologist on October 7 to discuss treatment options.  The memory has continued to be the biggest problem.

Today Mom went for a walk outside and got lost.  Gwynedd called to say they couldn't find her for lunch and had everyone out looking for her.  She was found out on a busy road after about an hour.  Unfortunately there is no means of securing her whereabouts or tracking her at Gwynedd.  She now must be transferred to a sister facility that has a secure unit.  For now the closest available room is in Southampton.  It's about 10-12 miles from Gwynedd.  We'll move her tomorrow.

It's hard to say how much she grasps.  If she's told something, she'll respond appropriately for a moment or two, but ten minutes later it's as if she never heard it.  An hour after that she may recall some of it.  For now her initial response to moving again is, "if that's what has to be then I'll do it".  It is all very heartbreaking to watch, but it doesn't seem to bother her as much as it does the rest of us.

More info to follow as we get it.....

Monday, September 21, 2009

First Few Days

So far so good!  Mom seems to really like her new apartment.  As is typical with Alzheimer's Disease (AD), confusion and memory disruption are exacerbated by the changes in routine.  Between the hospitalization and the move, the changes have definitely left her more confused than usual.  Hopefully things will settle back down once she gets used to a new routine.  She looks much better and is apparently eating more.

She would certainly enjoy calls or visits.  Remember, she is not reliable.  If you'd like to visit it might be best to touch base with with one of us to make sure she'll be home.  If you tell her something that you'd like her to share with us, the chances are she won't recall it at all.  She will not likely recall a visit either.  We're hoping that some of her memory problems will improve a little after a few weeks but there's no way of knowing. 

The best we're hoping for now is that she is comfortable and content.  We think she is in a great place to allow that to be.

Tomorrow is the PET scan which will have her out all morning at Holy Redeemer. While we're there, I'm hoping to get her upstairs to say hello to some of her friends in the OR.

Have a great day and thanks for stopping by!

Thursday, September 17, 2009

Home!

Mom got home last evening around 5:00.  She really loves her new place.  We're a bit surprised at how positive she is but we're not going to question it!  She had dinner there last night with some of her friends in the community.  They and the staff have been absolutely outstanding in their enthusiasm for welcoming Mom and making her comfortable as well as providing her children with some much needed peace of mind.

This morning Mom had breakfast and by 11:30 was telling us she was hungry.  Nothing could make us happier.  We met with the nurse and the activities coordinator, both of whom pleased Mom very much.  Between meals and activities there will hopefully be little time for missing her old apartment.  I expect there will be some difficult days in the coming weeks but if the first day is an indicator, this is going to be a great change.

Mom is feeling well all around and next Tuesday she will have the PET scan.  Some time after that we'll begin discussion of the treatment options.  Our goal is to pursue treatment which will be minimally taxing for Mom and allow her to enjoy her new surroundings.

For now it's all good and she and her family a very grateful to the staff at the hospital and at Gwynedd Estates for their compassion and fine work.  Of course we are also very grateful for all of the kindness, love and support from friends and family.

We'll keep you posted!  Thanks for checking in.   
(Yikes...just got the cell phone bill...should have started blogging sooner!!)

Wednesday, September 16, 2009

Home Today

It sounds like Mom will be discharged later today.  Her new home and neighbors will be anxiously waiting for her!  Unfortunately, her phone service won't be transferred to the new apartment until sometime tomorrow, so you will have to wait to call.
The next step will be a PET scan performed as an outpatient procedure, probably next week.  We'll then be consulting with a radiation oncologist and an interventional radiologist to evaluate the various possible treatments.
Mom has resumed eating and has been tolerating her meals very well.  She seems to have regained her appetite and then some!  She's walking around the halls independently so we're expecting a quick return to an active life.
Stay tuned for more....

Tuesday, September 15, 2009

Looking better

As of this morning Mom is looking and sounding a little better.  Her belly tenderness is decreasing and she's been on clear liquids since yesterday.  Today they say they'll start her on solid food.  The signs of infection have abated and as long as she does well with eating, she may come home tomorrow or Thursday.  Everyone agrees that at this point the best place for her is home!
She is a little apprehensive about moving into a new place but I think we've made some headway in convincing her that it's the best thing for her. Her memory is still a problem but she seems to be a little more interactive and aware of what's going on.
While I was there today she was seen by the resident physician, the Infectious Disease doctor (for the colitis), the Oncologist, and the Cardiologist.  The heart procedure is being postponed until the infection is completely cleared and she is off antibiotics, perhaps some time next week.  That will require a one night stay in the hospital. 
She has been walking around the halls and acting a little more like herself.  She's working on a few crossword puzzles and entertaining a fair number of visitors.  She has a phone and the hospital can put calls through. (215-481-2000)
                                       The Treatment Team

Thanks again for all of your love and support.  Her friends and family are the best treatment should could possibly have and she is very thankful and grateful to have them.  Paybacks!!

Monday, September 14, 2009

Long weekend

Mom has been experiencing some abdominal discomfort for the past few days.  Some evaluaion over the weekend revealed that she is having a little flair-up of colitis.  This may have been brought on by her very irregular eating patterns for the past week or two followed by attempts by the medical staff to get her "insides" working regularly.  Add to this the obvious stress of recent events and you can see why some intestinal discomfort might arise.  The treatment for now is antibiotics and digestive rest (fasting).  Hopefully they will allow Mom to resume eating today and this isn't too much of a setback.  She will likely start with liquids to allow her system to slowly recover.  
Unfortunately, this puts the heart procedure on hold for a day or two.  We'll know more later today after her doctors have had a chance to see her.  In spite of the events of the past couple of days, she seemed pretty perky yesterday and had no trouble walking around the halls.  It's not the length of walk she's accustomed to but at least she's out of bed.
We have pretty much completed moving in to the new apartment.  It's obviously much smaller than the unit she was in but it should be very comfortable with many of her familiar furnishings.  There are residents in the assisted living section who know Mom well and are very pleased that their friend will be joining them.  She will have a lot of support in making this difficult transition. 
More later....

Sunday, September 13, 2009

Updates as of today

Mom has been hospitalized following a period of poor appetite and generally not feeling "herself". A series of tests over the past week has revealed that Mom has a cancerous lung tumor. For those to who are interested, it is a non-small cell adenocarcinoma. It is a somewhat slower growing variety of lung cancer. We were all very surprised by this unlikely diagnosis.  So far, a brain MRI and a bone scan have ruled out disease spread to these areas.  This is encouraging.  There will be more testing in the next week or two (outpatient) to further evaluate her for any spreading of the cancer.  When all of the information is compiled we will discuss with Mom and the doctors the treatment options.
While in the hospital, Mom experienced a heart rhythm disturbance.  It is very likely that she has had this problem before but it was never captured on an EKG so it couldn't be diagnosed.  Now that the doctors know what it is (Supraventricular Tacchycardia), they will attempt a procedure in the next day or two to correct it.  They are confident that Mom will tolerate this procedure very well and it should forever eliminate this rhythm problem.  Once the heart problem is fixed, Mom should be discharged and we'll proceed with the last of the cancer testing.
As it happens, we were in the process of moving Mom to the assisted-living section at Gwynedd Estates when this all came up. That move has gone ahead and we plan to bring Mom to her new apartment upon discharge from the hospital. We're very excited about this change as it will be an environment which we hope will not only be safer but one in which she will be able to thrive, both physically and mentally.
I'm new to this method of communication but I hope I can use it effectively to share news with all who are concerned.
Thank you all for your love and support.