Not so good update

fairegoldJuly 9, 2005

Mother called on Monday AM to say that she had a lot of pain. More lower back pain. We decided to have her meals delivered (two months ago when she strained a muscle in her lower back, she didn't tell anyone because I was gone for the weekend and didn't eat for two days, stubborn lady!) for a few days and see if it's another strain, it will get better.

It did not get better.

Weds we saw he doctor, and I could barely get Mother in and out of my car and a wheel chair. We did more xrays, to compare to the ones done two months ago, to look for new compression fractures. Because I expressd a concern about pain mediations making her too unsteady, the doc (new one, regular doc is on vacation for a couple of weeks, but we like this fellow a lot) gave her Celebrexx for now.

Thursday AM she was in terrible pain, and after I got her back to bed at about 11 AM, I consulted with the staff of her home. This is a blended "age-in-place" apartment community with 75% of the people all independant, maybe 40 people on assisted living. Aside from getting wheelchair escort down to the dining room two months ago, Mother has been independant.

But we started her on full AL Thursday evening. She was very upset that they took all her meds away, to be administered by the staff. Mother has been perfect about taking her meds (mild BP meds, baby aspirin, Actonel and Miacalcin, now adding the Celebrexx and Lexapro which she had refused to take a month ago--but that's another story--- she's taking it now).

Thurs AM if I had needed to get her to the doctor, I could not have managed her. She would have required ambulance transit. But Thurs afternoon, she was far better.

Friday AM was good. Friday evening when we talked at 9 AM, she said she was in pain.

This morning, we'll see how she is.

Oh, the xrays do show two new compression fractures in her lower spine, and we are waiting to hear about an appt for an MRI.

COuple all this with the fact that she's lost stll more weight. 82 pounds fully dressed on Weds, down from 88 4 months ago, and down 4 pounds in the last month. So the doctor suspects something else is going on.

Wish me luck----if she's in a lot more pain this morning when I get over there, I'll talk to the staff and call the doctor. Or get her directly to the hospital. I am very concerned about heavier pain medication because she is barely steady as it is.

Thanks for letting me talk. It's been a long week, lots of hours over at her apartment. But a friend called Friday and said she was taking her visiting granddaughter to see Herbie Fully Loade, and would I like to go, too? Heck yes... a couple of hours of escapism!

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PeaBee4

That's the dilemma, isn't it!!! Less pain and less independence or more pain and more dependence. Is she capable of deciding? Does she understand that if they give her enough stuff to eliminate pain, she's going to have to be in a wheelchair for her own safety? That weight loss is scary. Is the AL home staffed enough to watch her? To see that she eats enough? sounds like rough times ahead for both of you.

    Bookmark   July 9, 2005 at 10:43AM
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fairegold

I can get extra care for her, but remember, this is a community with separate apartments, not a place with just rooms and a lot of nursing staff. There is, in fact, no nursing home license here, so any nursing would be completely separate. And she'll only eat what she wants to eat.

The doctor speculates cancer, which would explain the more pain. Mother is 95, so all I want is for her to be comfortable.

I would be most comfortable with her in the hospital for a few days because it will be impossible for me to transport her anywhere for the tests. Three days in the hospital, and then e can deal with a nursing home if necessary. We're balanced on the edge right now, as far as what is available at her place. They are great people, and do a terrific job, but this may be beyond the mission/abilities of the community where she lives now.

    Bookmark   July 9, 2005 at 11:08AM
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PeaBee4

You are in a bind, aren't you! Keeping her in the hospital for a few days would be the best way to go if you can swing it.
Good Luck and take care of yourself too. She's going to need you.
PB

    Bookmark   July 9, 2005 at 1:03PM
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fairegold

I waited 3 hours for a call-back from the doctor, and got none, so the staff called 911, and we went thru the ER. The people at Salinas Valley Memorial are great! Anyway, they got her on morphine, did xrays, and admitted her. Monday we will see the folks who do the vertrabraplasty (sp?) and see if Mother can have that done again, on the new breaks.

I left her just a little while ago, with a morphine pump and lots of good attention from the staff.

She had not utinated at all since last night until they put in a catheter, and she had a lot in her. Not sure if there is a bloackage somewhere there or not.

Not sure about much of anything else, but that it was good to see her without pain. I will sleep well tonight, I think.

Thanks for all your kind words. If this works properly, they'll do the procedure at the hospital, then release her to a nursing home. whew....

Helene

    Bookmark   July 9, 2005 at 10:00PM
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fairegold

Too much morphine yesterday, she was really loopy and nauseous. They took her off the pump and were going to give her some in her IV only when moved which is when she's in real pain. We see the radiologist today, so it will be a busier day.

    Bookmark   July 11, 2005 at 9:48AM
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PeaBee4

Hang in there today. We'll be thinking of you. Let us hear!
PB

    Bookmark   July 11, 2005 at 11:17AM
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mar_cia

I don't spend too much time here, so forgive me if I am "coming in the middle of the conversation." It sounds like you have had a difficult time. You have obviosly taken good care of your mom and made wise decisions, otherwise she wouldn't have lived such a long life. The question in my mind is ...have you enlisted hospice? They are normally wonderful and help with the whole process and decisions. That is really a lot of weight loss.

    Bookmark   July 11, 2005 at 7:26PM
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fairegold

Thanks, Mar_cia, but it's not a "hospice diagnosis". I got great help today, tho.

Today the MRI was postponed, because the machine was down. I got to investigate nusing homes, and there is one very close to the hospital, in fact in the original 1932 hospital building. Only 49 beds, about 1/2 are private rooms, very nice. I was comfortable.

There are three possible scenarios:
1---She qualifies for the procedure, it works, but is only a
pain-contol measure
2---she qualifies but it doesn't work, and
3---she doesn't qualify (fracture too large/diverse, etc) in which case we are looking at a lot more pain management than in case 1.

If she's truly in a shut-down mode, and isn't eating much, she'll sort of drift away. We can hope.

The miracle of the day is that I called Bobby at noon and wasn't very nice. He called Jim this afternoon, and brother John is flying from Biloxi to Las Vegas tomorrow, and he and Bobby are driving here on Weds. I'll let them stay in Mother's apartment, and they can 'bond' all they want. But at least they can see Mother, if all goes well. That is a load off my mind.

Thanks for keeping Mother in your prayers.

MRI tomorrow!

    Bookmark   July 11, 2005 at 11:57PM
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abreeze

Hi Helene... What a relief that your brothers are finally coming! Your mother will be happy to see them. I pray they do all they can to help you and your mother and ease the burden you've been carrying.

It seems that with most elderly folk, these bouts with pain, x-rays, tests, trips to the ER, etc. take quite a toll on them... We're praying for your precious mother. May God have mercy and minister strength, comfort, and peace to all of you. ~breezy

    Bookmark   July 12, 2005 at 9:40AM
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fairegold

The MRI went well---enough for the radiologist to say it's a go for the procedure... will be done tomorrow a little after noon. It should take care of the pain. We'll move her to the Convalenscent Home on Thursday, depending on how well she transition off the pain meds.

Bobby and John might be here on Thursday, don't know yet.

Today was a better day in many ways,.

Thanks to all for the support!

    Bookmark   July 13, 2005 at 12:54AM
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fairegold

Here is a great description of the procedure...

http://www.spine-health.com/dir/kyph.html

    Bookmark   July 13, 2005 at 1:03AM
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PeaBee4

Isn't it wonderful what they can do! I had heard of that sort of surgery, but I didn't know what it was called. I sure hope that all goes well and her pain is releaved.
PB

    Bookmark   July 13, 2005 at 4:52AM
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roar

My thoughts are with you Helene...

Thom

    Bookmark   July 13, 2005 at 3:59PM
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abreeze

What an incredible procedure!

    Bookmark   July 13, 2005 at 9:30PM
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fairegold

Thanks to you all, for the good wishes.

The procedure was today, worked well. This evening, before I left at 7, we had Mother sitting on the edge of the bed and actually standing for a few seconds. We don't expect her to start running laps, but it's the lack of pain that's important.

She still doesn't want to eat, and today, the pre- and post-op lack of food doesn't help. I got 4 oz of Ensure into her before I left, her first food in 24 hours. Staff promises to feed her some more, plus some broth. Mother's still pretty dizzy, to be expected.

    Bookmark   July 13, 2005 at 10:59PM
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fairegold

Latest: No pain, and we moved to the nursing home today. Her room is on the second floor, a private room, pink with stenciled roses, a corner with two windows with trees. The neighborhood is all little California 30's bungalows. She's plumped up several pounds with the IV she had at the hospital, but they weigh new patients for three days, so we will see. She seemed comfortable and was asleep when I left. Tomorrow I will bring over a lot of her favorite photos and things.

Two of my brothers drove into town, and called to say they are in a motel (in a lousy part of town, where I would never put anyone) and at 4 PM were too tired to come about 15 blocks to see Mother this afternoon. They'll come tomorrow, but have to leave an return home on Saturday.

I am trying to be fair. Mother will love seeing them, even if they only stay 15 minutes. (I, on the other hand, will probably shoot them if I see them...)

    Bookmark   July 14, 2005 at 11:43PM
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PeaBee4

Don't shoot them, just threaten them with it if they don't stay longer or visit more often. Maybe even tell them exactly where you plan to aim. Might work!!! I am so glad that you have her settled. I'm betting that she'll eat better now that the pain is gone.

    Bookmark   July 15, 2005 at 8:49AM
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mimi427

Dear Helene,
Glad to hear you've settled your mom and she is no longer in pain. Maybe now you can relax a bit and try to destress.
RE: your brothers...boy oh boy, what can I say? It just seems all too common when one sibling takes on the role of caregiving, the others back-off...SOOOOO frustrating for us, isn't it? Seems like all we can do is vent here and know that here you'll find people that know exactly what you feel and what you are going through...as far as trying to get them to spend more time with her, you're probably better off beating your head against a wall. Blessing to you, dear angel,
Mimi

    Bookmark   July 15, 2005 at 10:01AM
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woodie2

Hello Helene. I read over on cooking that you've been spending such long days with your Mom so I came over here. My Mom had a kyphoplasty in April but it didn't work and she still has the terrible pain and then she fell again and has it on the other side too. Its great that your Mom is getting some pain relief. Every day is a new adventure, isn't it. Her room at the nursing home sounds lovely. Good luck, my thoughts are with you and with her.

    Bookmark   July 15, 2005 at 5:36PM
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heydeborah

Dear Helene what a great daughter you are! i too am tired of beating my head against a wall with my mil and sil (other sil is coming next week, to visit - my mil and sil, seems they are going to the states (a 3 hour drive to duluth, minnesota) no mention of visiting al, these 3 phone each other l.d. all the time, but no call to al, it seems that they get all their informatin from each other, i wonder how they get it, since no one comes here to see him or call him. i am so thrilled that your mom is not in pain, although al's pain is ALOT different from your mom's doesn't it make you feel good when they feel good. we made Al go out to Wal-mart yesterday in the heat for an hour - all 4 of us in the car, and today, he and i went to the Salvation army, they had an electric scooter for 200.00, but we couldn't figure out how to work it -- lol, so we passed it up. i think we'll all sleep better tonight since it was only 78 today! i'll keep my fingers crossed for your mom and say a little prayer for her to be out of pain! debbie

    Bookmark   July 15, 2005 at 9:38PM
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fairegold

Thanks, all. Mother moved to a double room today. This place is only 49 beds, and they had a male patient coming in, and asked, since the only other bed was a female double. The lady in the other bed is a cute 97 yr old very sharp lady named Jane. She's a bit loud, but at worst, it will give Mother something to complain about.

Brothers John and Bobby showed up. Of course, they are leaving first thing tomorrow, so that is it. I left them alone with Mother as much as I could. They got to see her at her weakest and at her best, so they may have a good idea of how she is. They hung the "family wall" pictures. Of course that only bothered Mother because she thinks we have given up her nice apartment. I tell her that if she wants to move back to her apartment, she's got to get a lot stronger first. She is miserable to think that she has wound up in a nursing home. Maybe more motivation for getting out?

My brothers were odd. Jim tells me to not let it get to me. Sigh. So John makes reservations and pays for two nights in a motel that I would not trust at high noon on a bright day, much less even spend the night. Borther says, well, I didn't know.

IDIOT! You could have ASKED! I live here, I could have told him. They could have stayed in Mother's apartment at no charge (they did check out and move to the apt this afternoon). But no, I am the Wicked Witch of the West, and we don't even call to ask.

Stupid Idiot.

A least they came, and the look on Mother's face was wonderful. It meant all the world to her that they visited.

My cousin Linda comes tomorrow. Today was a lot more of getting oriented. Paperwork. Meeting more nurses, more staff, seeing routines, etc.

Poor Mother, she never wanted to be here. But we are doing our best to make it ok, and maybe motivation for her to get well.

I am sooooo tired. AT the end of the day, brothers took DH and me out to dinner and we were all civil to one another.

Thanks for all the support here.

    Bookmark   July 16, 2005 at 12:07AM
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mimi427

Helene,
That is the bottom line...that your mother was so happy to see her sons. But....I certainly don't blame you for your feelings, and I admire you for just taking a step back and not saying anything. It wouldn't do any good anyway, but I know it's very very hard not to say something. When you have siblings that are useless, there is so much resentment that builds...believe me, I know....again, I admire you, for all you are doing for your mother, being the wonderful daughter and good sister...be well, Mimi

    Bookmark   July 16, 2005 at 8:58PM
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fairegold

Well, the roommate didn't work out, and we are back to a lovely private room, across from the room that we had the first day. Linda helped me move the pictures, and mOther does like looking at them. Best news of the day is that she had a bm, and when finished, she walked (with a LOT of help plus the walker) about 6 or 7 feet to her bed. She was happy.

Bad news of the day, she weighs only 81 pounds (lost the fluid weight from the IVs), felt slightly nauseous all day, and didn't eat at all, except for (as of 4 PM about 4 oz of Ensure.

But Linda was a great help, and DH came over to help us move a couple of things, too. And Mother's more peaceful without a fidgety roommate.

Mimi, you are right. The brothers are gone, and I am happy that they had time with Mother. And I really don't think much more about them now. At least they came.

Thanks everyone!

Helene

    Bookmark   July 16, 2005 at 9:33PM
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mimi427

Helene,
I go through "those feelings" every other Sunday - when one of my sister comes to pick up mom for a few hours...doesn't call the rest of the month...is never here for any other sort of help and it does really bug me, but when she gets out of the car and my mom sees her, mom is all smiles with open arms and I have to tell myself that is what is important...anything that makes mom happy...be well, Mimi

    Bookmark   July 17, 2005 at 9:12AM
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fairegold

All is quiet in the new room, and Mother seems more at peace. Today I am picking up her neighbor, a retired nun/schoolteacher, who wants to visit. Thanks to you all for your support.

Helene

    Bookmark   July 18, 2005 at 9:53AM
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PeaBee4

That sounds good. May she continue to be "more at peace." Removing stress helps everyone.
Keep us posted.
PB

    Bookmark   July 18, 2005 at 1:05PM
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fairegold

Quiet day, but she was doing well when I was there.

I won't be posting daily updates anymore, not unless something happens!

Thanks, friends!

Helene

    Bookmark   July 18, 2005 at 10:54PM
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