Update on Lucy's mother

[Lucy]

Hi all,

Long time no post. I've wondered so many times about the group, and how everyone was getting along. Unfortunately, time just doesn't permit my checking in, what with Mother's condition and so many other things to do, it seems.

Mother was doing pretty well, up until today, but after her first typical meal of the day, she couldn't be awakened, and even now, is "out of it" much like she was a year ago last October when we nearly lost her during two admissions, back to back at the hospital. She has these really strange build ups of meds she takes for her dementia that goes along with the Parkinson's Plus condition/s she has had for so long. For that reason, the last dementia med had to be put on hold. I'm hoping that she'll come around after the old med is flushed out of her system a bit.
At least this time we have a way of hydrating her and feeding her through the tube in her belly without having to take her to the hospital. This is much less traumatic for her.

Assuming she gets better off that medication, I'm wondering if there are any of these drugs left that won't soon have the same effect. Could be that at her age, she just needs a much smaller dose than is recommended, as at that age, things aren't filtered out as efficiently, and therefore, can build up in time. 'm hoping that there's some way we'll be able to get her back to where she was.

We had bought a ramp van for her late last summer in case we had to evacuate her to this place I had reserved out of harms way if a hurricane came through. Didn't have to use it then, but we've used it since to take her to doctors, dentists, and other places, and even just for the pleasure of getting out of the house.

Mother's essentially like a quadraplegic, and she's got dystonia, particularly in her fingers, especially on one side. The superspecialist neuro doc gives her botox, injected into the appropriate muscles. It works to some extent, and helps in that her hands will eventually relax so that, at least, we can get something inside to keep the inside of her hands cleaned out. Now, we're keeping something inside the worst hand to keep her nails from digging into the skin of the palm of her hand.
As you can imagine, it's pretty uncomfortable tyring to open the hands, and her arms are fairly drawn up as well, so it hurts to move them around to bath and dress her, etc. It's just difficult emotionally when it's your own mother you are having to do this to.

Some of you may remember the difficulty we were having getting people to stay alert at night to watch Mother when she returned from the hospital so that we could catch up on our sleep. We finally just gave up on getting any alert help at night, and just did that shift ourselves.

Eventually, we found a wonderful lady through an associate, and she was here many months. Unfortunately, she had a very bad car accident, turning over four times. She could've been killed, but instead, had some long term therapy which was improving things very slowly. It was also difficult emotionally for her to drive this far.

Sooo..back to an agency we went. Then, we hired another wonderful lady on our own, and trained her ourselves, but she'd had a little experience within her family, etc. She stayed a long time as well, but then, her dad developed cancer, so that put her in the same situation we are in. Now, she's taking care of him herself.

Sooo..we went back to the agency, and have two ladies we like who are regular for the days they can come. The other days, they keep sending me brand new people, and it's so tiring because there are so many things I have to teach each of them.

What I did was to contact a new agency, and I liked what the administrator who came out had to say about the way they schedule people. Also, they have a minimum of a three hour shift, so it won't cost us as much per visit, at least not at first. We had planned to take Mother on at least two more dental visits as well as several other doc visits she was due for on Wednesday and Thursday afternoons for a while, anyway, IF we can get them soon, so I will have my sister here to help , get Mother up on the Hoyer Lift, etc.

After these visits, we'd thought things would settle down, and we could see about having regular people for at least three hours on Wednesdays and Thursdays, or maybe on Saturdays so one of us could run errands that morning while the other worked with Mother and whoever the agency sent. Now, even the doc visits are a big question mark, with this new development.

That's not the only new development. Mom also has some suspicious growth inside the right breast. She's been followed for cysts on that side in the past, and the oncologists had more or less told us there was no point in following the area due to their not being any possibility of operating on her. I'm just hoping we can at least get an ultrasound to know what we're dealing with. Perhaps she could tolerate something like Tomoxaphen (sp) at least, if it were to be cancer after all.

I know some of these things grow so slowly that she probably would die of something else before a cancer got her, but we certainly don't want her to suffer. I'm just hoping that we'll be able to find out that it's just more of the cysts, only bigger this time.

At any rate, I would never have thought she'd be in as good mental shape as she was in recently, so I keep hoping that she'll bounce back like before.

Just the night before, she was laughing her head off at a stunt my sister had pulled right after we put her to bed. I have always said that my mother's sense of humor would be the last to go.

Anyway, I'm hoping to see those pretty eyes open by morning.

Please keep us in your prayers.
Love you folks,
Luce

[starfire]

Wow, Luce,
I surely hope you get your wish this morning. I am so sorry.
Thank you for taking the time to update us. My thoughts are with You and your Mom & Family.

Love, Shirley

[tex]

Hi Luce,



Hoping your prayers are answered.

Love,
Tex

[MaggieRedwings]

HI Luce,

My prayers are with your mom, you and your family. You have had a very long haul of this and I hope your mom is with you and bright eyed this morning.

You are really a saint.

Love, Maggie

[barbaranoela]

Hi Luce---

and my prayers and good wishes for your mom are coming your way--U and family included too--

I hope this morning *mom* greeted U with twinkleing eyes that are opened to sooth your heart!!!!

luve Barbara

[JJ]

Hi Luce.....hugs on the way for you and your mom....




Take care kiddo.....JJ

[hazel]

Hope all is well this morning. What a time you've had. So glad to hear she's been better mentally for a while and gotten some enjoyment out of life. Glad you got the van so you can all get out more.

[annie oakley]

Wow Luce, you sure have your plate full. I sure your mom and you get some relief from it all. I took care of a lady in a rest home with that desease and her limbs were drawn up. She always moaned when I put a thin pillow between her knees to protect them, I keep you and Mom in my prayers. Love Oma

[harvest_table]

Hi Luce,

Lot's of Love and prayers for you all.

Joanna

[Mars]

Hi Lucy,

Just wanted you to know I am thinking of you. Lots of love and hugs being sent your way!

Love,
Mars