24/7 care doesn't necessarily mean in a hospital or professional nursing unit but it does mean that caregivers must be there around the clock in case she needs to get up in the middle of the night, manage her meds and feeding schedules. She will be too weak and too heavily medicated to risk her getting out of bed unassisted. The hospice people will train care givers and provide some limited respite care, bathing, provide equipment; commodes, walkers, etc., nursing at home checkins, etc. I have walked this road with both my stepmother and father - even had the same hospice nurse both times. Both passed away in their own beds, at home. It was very difficult but being able to honor their wishes was a profoundly spiritual experience for me.

Paul,

My prayers are with you and your Mom. Both of you are very brave.

Tim

As the end nears, I feel more and more compelled that when she is nearing her death, I will stay with her 24X7 until she takes her final breath. I have 5 weeks worth of vacation and personal time accrued at work. I really do not want her to go through this alone. She was there for my dad... I feel as though I need to be there for her...


Gary,

Thank you for reminding me that the stronger meds make it mandatory to have 24X7 care. I need to keep an eye on that issue as it progresses.


Amy,

It sure isn't pretty... And, pain control is soooooooooo critical... I look at my mom and think oh my god, how much worse is it going to get??? Sadly, I believe that the worst is yet to come.


Tim,

Thank you for your support.

Hi Paul,

I am just getting back from our long delayed trip and catching up with your post about your Mom. It sounds like things are progressing as expected. The timing issue is always difficult to predict. Layering the vicodin with motrin is good and the hospice staff have special training in pain managment so they will continue to have ideas for you.

One of the first sweets that Jack was able to taste after his treatments was Bassett's ice cream. He likes the vanilla butterscoth the best too. We went on their website to find out the local stores that carried it, but we were ready to make the trip to Reading terminal to get it. It's great comfort food, and a Philly special.

Hope things go well for you and your Mom. Just take it one step at a time.

Regards JoAnne

JoAnne,

No need to travel to the reading terminal... McCaffreys market in the Princeton shopping center has it... There is also a McCaffreys market in Yardley but I tend to buy all the butterscotch vanilla they have each week... :-)

Paul

Paul,

I can feel you, man, when you say you will by her side 24x7 until she takes her last breath. My mother was diagnosed terminal with ovarian cancer and the doctors expected a swift but painful 4 weeks or so. I was so fortunate in many was because her journey lasted about 9 months. I took off work and in many ways it was the best 9 months of my life. It's hard to believe it has been over 6 years already but I can feel it as if it were yesterday as I read your post. May your heart be filled with the love of all those here and around you and may you know how blessed your mother is to have you by her side.

Best Wishes,

Ed

Hi Paul, Thanks for the heads up - we're close to a McCaffrey's and I found it there tonight. It's the little things that keep you going...and they have other flavors for me. How's Mom? Regards JoAnne

Ed,

Thanks for the supporting comments.

JoAnne,

Great news on McCaffrey's... I use them in an emergency when the Yardley store is out...

Funny story... Back in January, I got desperate and emailed Bassetts ice cream asking where else I could get moms flavor. I got an email from Mary Bassett who said the Yardley store was scheduled to get 16 pints that Wednesday. I pictured a 75 year old lady whose great, great grandfather started bassetts back in 1861. She was sweet and caring in her response... Although, I half expected Bassetts to send coupons or something since I detailed how my mom had been eating 1/2 pint per day (everyday) for the past 5 years. Even so, I will save that email to remind me of this journey.

Mom is still toughing it out... She is insisting on seeing the ENT doc who originally diagnosed her cancer back in Mar, 2006. I am taking her sometime this week. When I asked her why she is going, she just says she wants him to explain what is going on now, and what is going to happen next. I will report back after this visit...

Thanks,
Paul

Hi Paul,

Great story on Mary Bassett and they really should have sent coupons under these circumstances. Still it was nice that they let you know about the delivery.

It could be that your Mom may also be going back to the ENT because he's familiar to her and he's who she associates with the diagnosis of the cancer. Good luck with the visit and let us know how you make out. Is the increased dose of vicodin helping her?

Regards JoAnne

Hey everyone,

Mom spoke to the ENT (over the phone). He called and finally reached her after several attempted calls were missed.

He explained the reasons why she is having problems drinking fluids such as soda, water and coffee coming up and out he nose. This is really getting frustrating for her (especially with her coffee!!!). The soft pallet tumor is interfering with the nasal passages. He mentioned that she could go see a surgeon he could recommend but that would involve all the same things she already has refused.

She then asked him how much longer does she have. His answer was he didn't know (no surprise).

Both the nurse and hospice caregiver were there today. The nurse called me after and said mom asked the caregiver how quickly she could arrange and get full time care (staying in her apartment).

In addition, mom finally told her downstairs neighbor about the cancer.

I believe mom sees her time living on her own soon coming to an end.

Over the last few weeks, the following changes in her condition have been noted:

1) Weaker leg strength. Difficulty getting in and out of the tub. I am concerned about this but she does have 3 grab bars and a sturdy special seat that stays in the tub (she sits in the chair while taking her bath/shower. I had also installed a 7 foot hose shower head when she moved in 5 years ago.

2) Liquids (water, soda, coffee, milk) come out her nose at almost every sip now. Milk shakes seem to not come back up. This is really starting to get to her.

On a personal note, I came home on Friday from work totally exhausted and feeling horrible. I ended up having the flu and was in bed for 4 straight days. Slamming headache, fever and general body ache. The sad part this was exactly what I needed it!!! No work stress. No mom stress. No kids stress. My family was wonderful... They brought me tea and toast. Glasses of ice water etc (which I lived on along with Nyquil and Sinus meds). I slept... Watched On demand (Sapranos season 5).

Hum... Think I could bottle up this illness again when the Masters golf comes on next month?

Thanks,
Paul