Author Topic: Wiped out...  (Read 10683 times)

quietdynamics

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Re: Wiped out...
« Reply #45 on: September 28, 2012, 07:55:28 PM »

How bizarre.

My cousin took the bus from NYC to the shore; she is going to stay with Mom Sat and Sun, so that Alex and I can go to a Celtic festival.

Alex met her at the bus terminal while I took Max, 11yr old lab to the vet. He has been having trouble getting moving in the morning. I threw a ball and he took a nose dive off the deck. Poor guy skinned his chin and limped. Then a neighbor came over a few days later and threw the ball and Max has been hobbling about ever since.

With people here I was able to get Max to the vet. Nothing broken and not arthritis as I had thought.

Max has cancer, lung and nodes.

This whole thing just paralleled Mom, going to get checked for one thing and coming home with something not expected, suspected.

I told the vet, after I babbled disbelief,"I am taking care of Mom, I can take of him too". He like Mom, has no pain. So Max is here with a script for tramadol. And so it goes .. 

Just learned the house with well water is within one mile of a cancer cluster; childhood leukemia.http://reichfarmss.blogspot.com/

There are a number of underground streams and loads of wet spots here/ Mom had to do mold removal this summer in half of the basement that is soil.It is the shore area with a low water table.

I am thinking I should buy bottled water? I did wonder when food shopping why people bought bottled water in the gallon jugs.

And it was mentioned to me by a nurse that cases of West Nile have been coming in.

We had decided that I would only stay here til' the mid to end of October before I learned all of this today.
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 #46 on: September 28, 2012, 08:26:47 PM »
Quiet,

I don't know what to say. I am so sorry about Max. I love my babies - they fill my house for me and love me more than I deserve. I can only imagine how lost and helpless you feel with all of this - not to mention the violation from whatever is poisoning your community. Gosh, I feel empty and sunk even thinking about it.

And your mother, with the research you've done, do you think that is what made her sick so quickly? Is there anything you can do? Like a class action?

I haven't read your link yet, I will go check it out tonight. I am praying for you, dear. God bless you.


quietdynamics

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Re: Wiped out...
« Reply #47 on: September 29, 2012, 07:32:29 AM »

Iraisin and all: "I can only imagine how lost and helpless you feel with all of this"

No, I am clear and focused. Mom has a living will. And fortunately talk of chemo/surgeries for cancer was open, as family and friends were dx'd with cancer. Remember Mom is 82 and so a good number of friends and family and her husband have passed on. I knew Mom felt awful that she was not able to bring her husband, my stepfather home. I have taken the right course.

We are going to the festival today.

Hopefully soon I want to tell you about this experience and how I am handling it given my own limitations, and the strengths, lessons I am learning.

I want to share with all of you the Hospice experience and the reaction of my children, and Alex, my soul-mate and rock. My daughter is more like me. She said "you will let me know what to do", and I could see her fear in her tearful eyes. And I relieve her by telling her "I will not have you do this". It has been consuming. My son is more stoic. I ease them by gently reminding them that our time here has a beginning and an end.

There are family tensions, and family support.

Max, as I posted was a shock. I lived in an area that was monitored for asthma. A major manufacturer of Vitamins was in the area, landfills, farms that leaked cadmium from all the farm  batteries left laying for years leaking into the many streams that came off the mountain ridge. Not something you would notice or think of as you passed the crops, small dairy farms, orchards. An idyllic, rivertown in the process of being slowly built up for the real estate taxes that benefit the community. I had thought a good questionnaire would have been to pet owners. To find out if they had disease. I thought that would hone in more on environmental factors, water, soil, pets do not participate in bad lifestyle behaviors.

Anyway, I have to get ready to leave. "Some" family is coming today and honestly I do not want to be here. It is my boundary.

As always thank you for your support. In my own small way I have probably educated a dozen people about SJS, nurses, aides, Dr.

Off to hear music all day and hold hands with Alex.
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"

Tivia

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Re: Wiped out...
« Reply #48 on: September 29, 2012, 09:20:00 AM »
I am so so sorry for all that is being thrown at you. I dont know you but I am crying reading all that is happening to the ones you love, and yourself. I am going to pray for you and your Mom...and Max. You love your Mom so much, hold on to that. I wish I had had the opportunity to spend more time with my Father before he left this world. Cherish the time you do have.


As for the toxic town syndrome I am also all too familiar with it. So much rampant dumping of chemicals, burning of pcb's, the runoff from the farms, lead contamination. Cancer rates, asthma, AI's, run rampant here in the lead belt. I grew up by a little place you may have heard of..Times Beach fitting name no? Why mankind seems determined to poison themselves in the name of convenience I will never understand.     

quietdynamics

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Re: Wiped out...
« Reply #49 on: October 01, 2012, 09:42:02 AM »

I left Mom and set out driving in my hot red Honda del Sol. Like this one: http://www.streetfire.net/rides/1993-HONDA-CIVIC-DEL-SOL-_1025411.htm  Shifting the gears and feeling free.. for about 20 minutes. My right arm started feeling like it was weighted down, legs started aching. headache. Got home and it looked so wonderful..but I could barely get up the stairs. One hour later I crashed for 5 hours. I woke up with a sty? and puffy left eye.  No festival today. But, it felt wonderful being in my own bed, and Frankie, the tortie cat was purring and rubbing on me..lol. She will even pull and lick my hair..strange. The old cat, Amy is in bad shape, and stumbling. The vet says an infection.. she is maybe 20 yrs old. And our Buddha, Siamese came to rub on me as well. I think even Alex was purring.

I spoke to my daughter for an hour. I needed to let her know that I miss her, so much.

We went late to the festival Sunday. Usually, I can feel the music in my soul, but, it just bounced off me. "Dead woman walking"  http://www.celticfest.org/  Walking back to the car I stumbled a few times and was really dragging. The camera batteries died, bummer because I love the architecture in Bethlehem, beautiful Moravian structures and the old Ice House on the Leihigh River. 

Spoke to my cousin and she got help while I was gone. She insists that I cannot do this, and actually the physical therapist from hospice has said the same to me more than once.

I wish I could spend another day here at home. With Mom, it is like being a mother to a newborn, your senses are always on alert. I cut my nighttime meds back, so I would hear her if she called out. At night I give her Ativan to help her sleep. And I now have to give her 1/2 the dose in the daytime when she becomes agitated. The nebulizer  in the morning to help her lungs. She does not know she is in her own home, so now I feel I have done what I promised and can move Mom close to where we live. She often wants me to cover Charlie, her husband, who she sees lying next to her. It is actually a pillow I put under her arm.

I made back-to-back Dr. appts for myself..to try to catch up. And was supposed to have Cardio, Gyno, etc,  done back in July/August. The Neuro has been a champ..but, understandably will not refill scripts again until I see him. Maybe I will take him some Hersey's Kisses..LOL.

I really did not know how tense/stressed I was until I left. My chest just feels like a band is constricting it. And I did not realized how much shallow breathing I have been doing, until I tried to sing along to a song on the radio during the car ride home. My favorite Pat Benatar.."Love Is a Battlefield". My daughter and I would always turn up the volume and shout that one out! I have klonopin, but I have only used it twice.

Time to go pack up some warmer clothes.

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 #50 on: October 01, 2012, 01:25:05 PM »
Quiet

You really have had your hands full recently with your mum and your own problems. It's no wonder you are worn out. But, it sounds like our mum could be brought nearer to you now, and hopefully, that would help you a lot.

You are a wonderful daughter.

Sending you a big hug.

Kathyx

quietdynamics

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Re: Wiped out...
« Reply #51 on: October 09, 2012, 08:39:17 PM »

We are coming to end of Moms' journey.

Mom was not eating much, a few teaspoons of applesauce, jello offered throughout the day. I would put Wendys' chocolate Frosty, in the freezer and spoon that into her mouth. Diluted Cranberry juice. Since Friday she has barely taken anything. And her ability to swallow fades away.

This has been the difficult time for me. When I was spoon feeding her I was the caregiver, it gave me purpose, and mothering satisfaction. I had relinquished the hygiene changing to the Hospice aide who comes for 2 hours, in the afternoon..changes Mom, washes her and changes the sheets. With Mom so weak it is easier for me to wait for the aide so we do it together.. I know the aide, who is wonderful, can do this herself..but, I work along side her. When Mom had some strength I would change her and check her "tush" first thing in the morning. It is a process of adjustments, with comfort and calm; the goal. I play soft Diane Krall for Mom, songs she knows. I hope she see herself dancing and will pass that way. She was stunning, tall, with a presence that commanded attention when she merely entered a room. I put a dab of her favorite perfume under her nose.

I laid next to Mom, stoking her gently, talking to her. " Mommy did you see Mom today, Aunt Nornie, Charlie ( her husband who passed 4/11)? Everything is taken care of; we will take care of Max (Mom vaguely knows he is limping), Morgan and Scott are good (her grandchildren). Mom, you are not going to get better. You can let go"

Mom is just today starting to have some pain. I gave her a first dose of Morphine..she is wasting away and does not need much. I give her kisses.
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"

Bucky

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Re: Wiped out...
« Reply #52 on: October 09, 2012, 08:55:28 PM »
((Quiet)) . . . you are in a heart-tugging position . . . being with your mom in her last days.  I've been in your shoes and I know how it tugs at your heart strings to know you will lose your mom here shortly and there is nothing in your power you can do to heal her and make her well again.

Continue to talk to your mom, even though she may not be able to communicate with you.  I truly believe the hearing is the last sense to go . . . she will hear what you tell her.

I wish you peace and comfort as you deal with this difficult time in your life. 

Hugs,
Bucky
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Carebear

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Re: Wiped out...
« Reply #53 on: October 09, 2012, 08:58:41 PM »
Quiet,

Bless you for taking such good care of your Mom.  I can really relate to your experience, just as Bucky said.

You're a good daughter.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

quietdynamics

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Re: Wiped out...
« Reply #54 on: October 09, 2012, 09:21:01 PM »
Hospice has been wonderful and supportive. The nurse held me as I cried, when she said Moms heart is irregular. I knew the time is near, but hearing it; a flood of emotions came. I pray it is soon and I am so very relieved Mom is not in pain. That is what I focus on. This came so quickly.

Doing in-home Hospice has been consuming. I have been here since mid July. I was only able to get Mom into the wheelchair a few times, using the Hoyer lift, and once into the reclining chair in her bedroom. I thought I would have Mom in the wheelchair everyday, have breakfast with her in the kitchen and sit with her and Max on the deck overlooking the yard. That was my vision; but reality got in the way.

Hospice supplies all of the necessary medications, supplies and wonderful support group. They do keep an eye on the caregiver, take time to sit and talk. I bought Mums and gave the nurse, aide, and physical therapist a plant.  Giving something living.

If someone needs they can change to Hospice care in a facility. So you are not locked in, should other events occur, care becomes overwhelming. We were going to move Mom up to where we live (an hour away), so I could go to my Drs. An hour drive does not sound like much, but for me a round trip and the office time is exhausting.  Mom doesn't know where she is now. But, the nurse told me in her experience  we would not have time to move her.

Having this experience I would opt, for myself, to have the change to "facility" care. Home while lucid, then facility. I think it is easier and more restful for family loved ones. Hospice does not = cancer. Any condition that is terminal, 6 months, is covered by Medicare and/or Medicaid. If the patient has life beyond 6 months, Hospice just re-certifies dx. If during hospice, the patient decides to try intervention, they can. And later they can get Hospice again.  If the caregiver needs a break they have "respite"care where the patient goes into a facility for a few days and then home again.

It has been much better to have Mom home, less stressful, than bouncing back and forth to hospitals/ rehab, trying to catch Drs, phone calls.

The only major difficulty was doing this in Moms' home and being away from my home.

I did have to use my meds differently. And I did use klonopin a few times. I forgot Ambien after we took a break last weekend, eventually that caught up with me, and my right hip got the "wonkies" so I need to step up with my left leg.. just adjustments.  The aide is here for two hours..but I have been too tired to go out..so I sit on the deck with Max, he has lost the use of his right paw. I give him Tramadol.

My cousin took the bus from NYC and she is here with me. Alex will come tomorrow (I told him to stay home today). My cousin and I will go out tomorrow..perhaps the rain will stop and we can look at the ocean. I have yet to get there in these 4 months.

So the journey evolves and the passing in imminent.

The conservation of energy is one of the fundamental principles of physics and no violation of this law has been found till date.
It states that, "Energy can neither be created or destroyed, but can be changed into different forms".

I am excited Mom will soon start her next journey.

If anyone has questions about Hospice and I can help; send a PM, I cannot access my email  (?) and will open a Gmail account.
« Last Edit: October 09, 2012, 09:38:19 PM 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 #55 on: October 09, 2012, 10:44:37 PM »
Quiet, my prayers are for you and the rest of your family still here. I know the ones already on the other side are setting up a party!

I'm so sorry that I can't do anything for you except let you know that you aren't alone.
Hugs, big, long ones,
Sharon

quietdynamics

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Re: Wiped out...
« Reply #56 on: October 18, 2012, 10:22:23 AM »
Mom passed Sunday at about 1:10 am.
Mom passed pain free, peacefully and with the dignity she always talked about, wanted.

Friday afternoon, Mom with the little strenght she had, reached for my hand, she opened her eyes unusually wide, her pupils were enormous,gentle,and I felt I was drawn into her soul. Was I imagining it? No. Mom, closed her eyes briefly, and then opened them again.. I felt my energy,soul ..just fastened into the peaceful depth, to a place i have never been. This will be with me always, an experience beyond words..a precious gift, mother to daughter. The wonderful aide witnessed this. The aide has 20 yr. of Hospice experience, and she was taken aback.

It is perhaps part of the rally some people have before passing? Moms breathing changed.

Mom was not happy about the catheter, not having her underwear on. I got rid of the cath, washed my Mother,underwear, and of course a dab of her favorite perfume, gentle brush of her beautiful wavey hair and the blanket her mother had made for her. It was all so simply natural.

My son came with a single red rose. When I went back into Mom, my son had placed the rose in his grandmothers hands, freeing them, whereas I had covered them. His thoughtfulness, and arranging her hands, just so, filled my heart. He said, Nana loved a single red rose.

Thank you, each and everyone for your support and prayers. Today, I am going to drive home with Max, I promised we would care for the old boy.. He has lost the use of the right front paw.. My right arm is weak.. So we have bonded..lol. Hope the cats adjust. Alex is getting the house ready, and my daughter will come  back with me to help with Nanas' house in perhaps a week.

I have invited the Hospice nurse to my home, and hope to take her for lunch, there is a nice bistro with a deck overlooking the DElaware River, then we can enjoy the art and antique galleries. She was a strong and powerful comfort to me..she would even physically check Max!

I will gather my info on Hospice and post it in a few days.

Find your blessings ..great and small, apparent or upon reflection. I promise you they are there,love Barbara

« Last Edit: October 18, 2012, 11:29:05 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"

Carebear

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Re: Wiped out...
« Reply #57 on: October 18, 2012, 11:00:44 AM »
That was beautiful, Barbara.   Prayers go out to you and your family.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

Bucky

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Re: Wiped out...
« Reply #58 on: October 18, 2012, 04:51:38 PM »
Barbara,

Sending my condolences on the passing of your mother.  As difficult a time it was for you to be away from your own home and family caring for your mom - you were where you needed to be.

How sweet of your son to get a red rose for his grandmother and place it in her hands.

Life will be different without your mother - you can't call her up and hear her voice.  You can't go shopping together, etc.  But . . . she will forever hold a tender spot in your heart.

Wishing you and your family peace and comfort.

Bucky
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iraisin

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Re: Wiped out...
« Reply #59 on: October 18, 2012, 05:01:58 PM »
My deepest sympathies to you, your daughter, Alex...everyone in your beautiful, caring family.

Thank you for sharing all of this and letting us witness such goodness, respect, honor, love, dedication...there's just so much you gave us with all of your posts.

You've shown your daughter a great thing. I took care of my mother for two months. My son helped me and has a new mind about responsibility, family, and loving.

You really did an incredible job keeping your head. Your posts are so calm and smart. Your actions in how you tended to your mother where so thoughtful and caring.

You are such a beautiful spirit, Barbara.