Author Topic: Wiped out...  (Read 10691 times)

quietdynamics

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Re: Wiped out...
« Reply #30 on: August 25, 2012, 08:35:01 AM »
The Dr. who was covering for the PCP, when Mom was crashing and put her in the hosp did more extensive tests. This after a month of gastro bouncing, while she developed the first infection in her gall bladder. Surgery was on 8/10. He noted that her blood calcium was high; possible parathyroid. He brought the level down prior to surgery and with the IV she looked and acted so much better.

8/13 Rehab where she was left to lay in bed with no assistance that we saw and fell on 8/17, and we were questioning staff all along.
after surgery, in the hosp she was able to get to the bathroom ... in the rehab she was put in a pull-up and dumped ...how much dignity in that???...then we insisted she go to hospital.

Mom was admitted on 8/19 re-hydrated  250 l/hr and calcium high again, after 4 hours of treatment she was sitting up, more alert, still disoriented, at this point. And we changed Dr. of record. 8/20 neuro called in for MRI. CT had already been done. Full body scan was done for bone density? UTI corrected. 8/21 Neuro Dr. came in come exam and we were able to give him info of how independent Mom was 2 months ago. He went out and returned with some chocolate mini bars for Mom...blew me away. Mom was able to walk from bed to door and Hosp had physical therapist working Mom.

Did I mention her last Dr. was treating all of these symptoms with Vit and low dose antidepressant/ no follow up beside gastro bouncing? 

8/23 Mom in different more professional rehab. 8/24 Dr. Lempel will consult with Neuro and bring in Endocrinologist.

I am going to talk to Dr. re: Primary hyperparathyrodism. The symptoms sound so much like Mom. I get scared that I can see her heart pounding through her sheets when she is laying in bed  The test showed no aneurism, but, I place my hand there and can feel it just at the sternum.

http://en.wikipedia.org/wiki/Primary_hyperparathyroidism       The 3hr. test sounds more sensitive than what was done.
 http://en.wikipedia.org/wiki/Left_ventricular_hypertrophy

Just so that all of you know Mom is not in any pain.

For a moment I even wondered when her thinking was scrambled, looking for words, difficulty concentrating: she has always carried hard candies with her, has flaking skin on her face get worse with stress ....if it was SJS. She has some autoimmune issues. When I was initially Dx'd I asked my Mom to have her Dr. check her ANA. Even had my daughter done for a baseline. But, that was when I was new and now I now that is not the end-all litmus test.

Again, we are blessed that my Mom is not in any pain and is in now in a very professional and attentive facility.




Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

quietdynamics

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Re: Wiped out...
« Reply #31 on: August 25, 2012, 10:16:39 AM »
Before I get ready to go visit Mom...just wanted to post some things I have learned that may help others. Although, clearly this is new, emotionally and physically draining....I prefer to focus on the positive;that being, what has been learned.

Yes...a die hard brewed coffee drinker will drink instant coffee. I was too tired to stop to buy coffee on the way home. Folgers is not bad!

Stress Flares:
Lidocaine Ointment USP,5% has been invaluable to control pains. Ex. woke up right wrist felt sprained.
Refresh Optive Advanced. Eye drops with a soothing gel consistency. Ocular Rosacea (SJS connection) has been daily finally got to pharma.
Fresh Fruit
Water, water, water, and gatorade...lol

Naps and downtime....drove nowhere in particular and enjoyed the view. Could not go to the beach, too crowded. But, will go get my daughter this week and bring her down to go take photos and invite a friend down for a visit. Enjoy Max, brush him, walk him, and baby him, he is 11 years old.

Alex has been trying to relieve me...and send me home. I went home and crashed for 3 1/2 days...when Mom was in the rehab. Alex went everyday @ 11 AM and 4 PM and questioned nurses. That was when I came back and saw her condition (not rehashing here).

On a serious note: we should have had a power of attorney in place. I am the executor of Moms' estate. Something to think about regardless of age or condition of anyone with finances.
But, now bills are due and only her name is on her accounts and she has a lot of money in them.
What I learned: in NJ the bank has a form that will give me "temporary power of attorney" over her accounts. No attorney. Mom signs and form is notarized.
Here is a link I will use for myself from the Academy of Neurology as a guideline: http://www.aan.com/elibrary/neurologynow/?event=home.showArticle&id=ovid.com:/bib/ovftdb/01222928-201208040-00014

We are no longer quasi-tech-neaderthals: Alex took me and we upgraded to smartphones and wi-fi so now I can connect with YOU, my support group and understanding friends....sincere thank yous.
The cost made me shiver...

My Mom's situation has re-lit the fight in me, and shown me that I can push harder than I have been...so in essence I was being dragged down/inward by the combination of my own situation. Living this fight has shown me that I can manage more. Yes, I crashed daily with a nap...but, then I did more. So I need to better manage my energy to achieve a better quality of life. And it took Mom to show me this. She at one point said when we talked about moving to the lake community that she did not want to be a burden...and I said to her...my gut feeling....Mom I think you will be helping me (she being so strong and independent).

One way or the other this episode will run it's course and WILL have a happy ending. Of that I am confident.





Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

Katybarstool

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Re: Wiped out...
« Reply #32 on: August 25, 2012, 01:10:04 PM »
QD

Your positivity is inspiring. I'm in awe of all that has been happening to your mum and the way you have dealt with everything.

Sending you hugs and prayers.

Kathyx

EllaBlue

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Re: Wiped out...
« Reply #33 on: August 27, 2012, 05:33:05 AM »
Hi quietdynamics:)  I am fairly new here and missed your story.
I love reading "how" you describe things like sitting by the river.
I took care of my mom back in 2004.  God knows I felt 100 percent better than I do now. I had a man that I was engaged to, was the love of my life and sadly he left me for a MUCH younger woman. God has a plan and I believe that this was best for me long term.  What I mean is I am very accepting over time.
I loved my mom and I adored and appreciated the time we had. I wish she were here to do it all again despite the pain and how difficult it was. She suffered from alzheimers and eventually cancer. No-one else bothered......BUT I get the memories right?
Sorry I got distracted.  I hope you are feeling better and I wish ALL good things for your mom!~!
EllaBlue

Gayle

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Re: Wiped out...
« Reply #34 on: August 27, 2012, 08:43:21 AM »
Hi Quietdynamics,

Hope you have a better week with your mom and you continue to get rest as you can. Sending up prayers and a warm soft hug for you!

quietdynamics

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Re: Wiped out...
« Reply #35 on: August 28, 2012, 10:24:43 PM »
Mom is still not eating, or drinking.
I took in some watermellon and fresh whole milk, once even sugar laden Minute Maid lemonade...just sips and a bite here and there.

Yesterday I pushed her in the wheelchair to the office to see the notary and to have her sign some papers. The admittance wanted me to sign some papers, but, I pointed out that Mom had signed her name for the bank and perfectly capable of signing her own forms. I had gently, lightly styled her beautiful white hair and put some blush on her cheeks. Where did those bones come from?

Afterwards...I told Mom to show me around. I did not want her back in her room. We saw the courtyard. It had rained and there was a Mamma Duck with Babes near the glass door for us to watch, we wandered the halls a bit. Then she was so tired we returned.

I stopped in Lowes and found some Yellow Coreopsis to plant for her ...instead of Mums. I was so happy. Reduced to $1 and healthy.
Figured she would forgive me for the Magnolia tree I cut back....into a bush   :-[

I have been ignoring/ daily stress headaches...while they were "do able". Today I got out the 3 Advil. This is the type the Topamax does not touch. So I did not get to the Rehab till 5...and Mom was not well at all. Her eyes were glassy, she could barely open them to look at me...although she knew me. She told me she was cold.  Temp. 99.3

Dear God ...she looked so much like my step father before his passing. But, Dad was in his 90's and had just then developed prostate cancer. 

My mind is screaming. I get the nurse...questions....Please call the Dr....My mother is abcdefg....OK tests ordered for the AM.
Dehydration? Calcium Again? I tell the nurse: you know ongoing fluctuations, high calcium can cause cardiac arrest. I pull back the covers and show her my Moms chest and you can see her heart pounding. Her heart is not enlarged, I tell her. Hope she remembers all that if I haul everyone into court.

Hey want to add in Kidneys? What is being affected by all of this? Long term damage? Malnutrition? Another UTI?

Would they let this happen to a child?
My brain is screaming....an 82 yr old sick woman has not eaten or drank in how many days?  Mid July! So basically, am I correct in that periodic IV's and muscle are keeping Mom alive? And she is doing physical therapy in the morning? And taking folic acid, small cup of juice and hospital size soda....so sugars.

What do I do? I need to make a list and hit on key items when I speak to the Dr., and I want to speak to the Neurologist (Alex is going to do that part).

I am going to bed now. 

« Last Edit: August 29, 2012, 10:03:49 AM by quietdynamics »
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

iraisin

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Re: Wiped out...
« Reply #36 on: August 29, 2012, 05:11:51 AM »
YOu are such a warrior!!!!

My heart goes out to you QD. Stay dilligent and strong.

I'm glad you are finding your own improvement in all this and discovering valuable lessons to help you thru your life with SJS. And thanks for sharing that with us like you do.

I pray today brings improvement and peace to you and your family.

Hugs and love to you.

quietdynamics

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Re: Wiped out...
« Reply #37 on: August 29, 2012, 11:44:40 AM »
Thanks iraisin....

"discovering valuable lessons to help you"  99.9% of us have learned from our own experiences and this is what is helping me stand up for my mother.

I had learned valuable information when I took a night course in Special Education Law.
And when my own daughter was having her medical problem and being pushed to anti-depressants...it was her thyroid...I called in Crisis Intervention. LOL.

The medical people said, OH Crisis has been called in! And the woman, her name was Jessica, said yes, the childs MOTHER called us because her daughter was not receiving proper medical treatment...then she took notes. The three of us would then go out for lunch. Crisis Intervention said I was a first for them.  Crisis Intervention was an invaluable resource.

It was just after that when my own body finally crashed... being in a rural area of NJ then, it was nearly impossible to find specialists who would accept low income state insurance. I was scraping by ...just myself and the two kids, a student loan for night courses, while I substitute taught during the week and did the equestrian programs after work, weekends, summer...then I remembered from the same course that "entities" that receive state/federal funds have to accept the insurance so I got into Robert Woods Johnson and was finally,Dx'd.  After, like my daughter being put on anti-depressants and a pat on the head for a number of years.

So we learn experience. The Rheum @ RWJ told me about this site and I learn here... and now I help my Mom. And by posting hopefully help another.

Yeah...no headache today. Major relief. Drank copious amounts of water yesterday. Did some laundry...only have a few clothes here...mix and match...but, tired of wearing them. Wear my hair up, then down, french braid, quasi-twist.

Finally tried the Clonazepam ,025mg last evening. Had the script for 2 months and was leery of it. But, my chest felt tight (again), happened, noticeably on the way into the hospital last week...so I did some slooow, deeep breathing, walked in and the AC felt good.
Opened the foil and it was a powder? Wicked thought...anyway thought I had broken the pill. Haven't opened another yet...so I don't know.

Off to see Mom...Maybe a fast food Milkshake will be soothing for her today. I dip a Q-tip in her favorite perfume, wrap it and take it to her.

Have a great day. 

Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

Gayle

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Re: Wiped out...
« Reply #38 on: August 29, 2012, 06:22:20 PM »
YOU are amazing.... big hugs!

quietdynamics

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Re: Wiped out...
« Reply #39 on: September 08, 2012, 09:35:29 PM »
Mom was admitted to the Hosp again on Sun. 9/2..I am so relieved.
@ rehab I reported to the nurse that her feet and ankles were swollen and she had too much pain to even stand on wed. 8/29.
Kept at them and nothing. Visited Mom on Sat and she was sitting in Dayroom with feet down? Questioned nurse and she checked and reported there was nothing in notes re: swelling or the skin deterioration at tail bone. One- on-one chit-chat with supervisor.
"Shall I pull up the car and take her to the ER myself?" Etc, Etc.

Sun. ER: Deep Vein Thrombosis, both legs, groin to her knees, and clots in her lungs. IV, med to bring down calcium and heparin.
CT Scan shows small mass in right lung. Other test node on adrenal.  Blood calcium off.
Mon. pick-up Moms' personal items from rehab and learn from roommate strap sandals were shoved on her 2X's normal swollen feet.

Wed. MRI w/contrast of brain is clean.  No tumors.
Thurs. filter inserted into the vena cava to prevent pulmonary embolism. Lung biopsy ---> right lung collapses some, tube inserted.
Fri. We get to hosp @ 7:30AM to talk to Dr.He mentioned chemo, took his time and is very thorough and caring.
Sat. took tube out.
Sun. Mom "out of it" probably calcium is off again, this can be manage with med. She thought her mother long deceased was my mother. I assured she was my mother as she was the only one who could put up with me..LOL.

I had the dietician change her food to chopped as Mom was so weak/spaced. It seems to work better and she ate 1/3 of her meal, all the cranberry juice and the strawberry ice cream. Mom did good.

We are hanging..waiting for the Dx, so we will know what to do that will be best for Mom and honestly for myself now as well.

I need to get back to my Drs. who are on hold, and have been kind enough to fill scripts without seeing me. I had started some tests that need to be finished. I lost a lens in my glasses and it was not fun driving home from the ER @ night with prescription sunglasses.
One day I slept a total of 15hr. and the average is now about 10hrs. And my stomach and chest are not happy.

Wed. before I left for the hosp. my son called. His girlfriend had blood in her mucus at work and pain. So I went and picked her up (got lost and went in circles and loops, through a flooded section) and took her along. Oh, and while lost the Hosp. Social Services called and wanted to make arrangements as to where Mom is going upon discharge.. hey can we get a Dx first?
Alex drove down ..I was on a roll in the ER, told them you guys are so good I brought you a new one! Small Hosp. I could have been a Youtube comedy. Later, Alex told me he was actually afraid I was going to have a nervous breakdown. But, he did admit it was funny  ;D

Stress therapy: Pet Max, I put my Moms' robe on the floor for him to sleep on in the room where I am staying.
Stopped in Lowes again.. some more reduced perennials and two small lilacs that the sales man reduced to $1 Whoa. Happy dance.
Picked up some top soil and black mulch that I am driving around with in the car. Too heavy for me to lift.

Oh ..and I have a new hobby. There is a really awesome spider out on the side of the house, where the sliders open to the deck.
This thing is amazing!  It must be two inches wide and where it's legs meet the body it is red. I have watched it spin it's web and now the web is at a 45 degree angle from the cedar siding.

I have a cousin who is going to advise me on medicare. Our goal is to get Mom home. My cousin is in Social Work and has offered to "clue" me in.. I will share what I learn. I cannot find "the power of attorney" paper, so I may have to call the attorney who did the will..just to get things in order to handle finances for aftercare.

I think this may be more stressful.

So far I am convinced taking the aspirin at night has helped me. I think with the chest tightness..I have to remember to breathe. Gosh, they drive so aggressively down here. I was waiting for traffic to move going north and wham.. car came into the south lane..3 car accident; and the man who shot out from the hosp emergency/out-patient exit had a child in the car. What was the hurry?

Well..I know you hope that we have answers soon, so that we can do the next best thing for Mom. And Alex and I can get some rest.. and a date. I want to take him to the boardwalk, especially now that everyone has gone.

My best to everyone.



« Last Edit: September 09, 2012, 12:58:01 AM by quietdynamics »
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

slccom

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Re: Wiped out...
« Reply #40 on: September 10, 2012, 11:29:03 PM »
How was your day? Better, I hope!
Hugs, Sharon

quietdynamics

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Re: Wiped out...
« Reply #41 on: September 11, 2012, 05:06:18 PM »
Thank you Sharon... I am depleted.

Mom is coming home. I did not go to the Hosp. yesterday. 1st time in a month?.. seems we have been on this journey longer.
The Oncologist called. 

I did not go yesterday,Mom was not lucid due to the high blood calcium and Alex went. 
When he left the tears of reality, finality. And then, the resolve to be grateful for all the present positives: Mom is not in pain, when the Ca+ is brought down she is lucid and when it is higher her "hallucinations are pleasant", even the fact that the house is a ranch is a positive, her Dr. is also an accredited Hospice Dr. and Alex is my rock.
 
I started "nesting"for Mom's homecoming , shampooing the carpet, vacuuming, washing the window screens.. in a futile effort to protect her affected lungs. Silly, but, I want it fresh and airy for her. She has said she wants to sit out on the deck with Max. The hosp. bed, lightweight wheelchair, etc will be here. Alex will meet with Hospice tomorrow. I need to go home and my eyes checked and driving glasses made.

There will be no Cancer treatment.  Just amazing that she was so physical the 1st part of July.  Dr. prognosis is 6 months. But, today she has fluid in her lungs and her WBC is high without fever.

Medicare covers 8hr x 3 days home care. I told Alex we HAVE to go out at least once a week on a date. I will see if the local library will let me join. 

I have told family that they are welcome to sleep over and "live" the day with Mom.  I am so grateful she goes in and out of being lucid..I just do not want my mother to be afraid. When the gastro Dr. said aortic aneurism or cancer, that scared her, she was shaking with fear and we talked and I laid down next to her and let my Mom know I would be there for her.  And so we are.




 
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

slccom

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Re: Wiped out...
« Reply #42 on: September 11, 2012, 06:19:56 PM »
 :'( I'm so sorry. Your mother will have a peaceful passing, full of loving and being loved. And she will always be there for you!

Hugs, Sharon

quietdynamics

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Re: Wiped out...
« Reply #43 on: September 21, 2012, 06:21:52 AM »
Mom has been home now one week. I am doing hospice in her home. It is a ranch so Mom is in her bedroom with her own blankets and scents. And much easier on me.

Through Hospice I ordered a lightweight wheelchair and a hoyer lift. So far Mom has been able to have breakfast at her table and go out on the deck, Alex helped pivot Mom onto the chair, only once. I also requested a physical therapist, since Mom had basically been laying in beds for 4 weeks and not using her legs, stomach muscles. The therapist went over the hoyer lift with me so I hope to get Mom in the wheel chair today and out on the deck.

An aide is coming Mon-Fri, two hours a day. So I can get out. Originally, it was going to be less. I explained briefly my loss of right arm strength.. and I guess this is one case "but, you don't look sick" does not apply.. I look drawn and tired. Forgot my makeup when I left my home to come back to meet the ambulance..LOL.  Another reason, I post here Do NOT wear makeup to your Dr. appt. Let the Dr. see your pallor, etc. (and then put it on in the restroom or car after the appt)

So far Hospice has had supplies/equipment delivered and set-up, nurses, aides, social worker, therapist, chaplain is coming today,FedEx delivered meds, hospice volunteers have called..that flurry of phone calls and answering the door, getting Max each time has been more exhausting than taking care of Mom.  The "quiet" is in my posting name for a reason. Mom heard a doorbell ring on a TV program, and told me NOT to answer the door.  ;D

Thurs. Mom and I did have a quiet day.. I laid down next to her till she fell asleep. The aid came and gave Mom a full washing and shampooed her hair.

Alex did have to go home and I did tell him to stay there awhile. I needed to be able to freely feel my own emotions as they came. I did not want him to get overly concerned about me. Before he left he did the food shopping and brought me chocolate and treats for Mom.

Being here is infinitely less stressful and taxing than the rehabs and hospitals; of course at that time we did not have a conclusive Dx.
And  my brain/emotions were spinning:setting off symptoms. Sitting in the ER next to those beeping monitors with a headache.  So basically, coming back here and crashing. I did lose 6lbs.

I have been learning how to set limits and will post them later in the hope that if one of you has to take this journey or if one of your loved ones becomes your care taker my experience may give insight.

Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

iraisin

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Re: Wiped out...
« Reply #44 on: September 21, 2012, 10:08:42 AM »
My dear friend. My heart is filled for you and your mother. You are doing a most beautiful thing, sweet lady. I'm so overwhelmed reading your plite and admiring your strength and love resolve. What an honor to witness this of you.

Bless you, over and over again.