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Thursday we took Mom back to the doctor. Her yeast infection was nearly cleared up but for a couple nites she moaned and grimmaced in her sleep but all she could tell us was it hurt when she had a bowel movement. She was also having problems keeping her food down but has a hiatal hernia and that medicine doesn't always work well for her. Dr decided to put her in hospital for preventive hydration plus a lower GI scope. They did the scope this morning and found cancer. The doctor that did that was a specialist Mom's G.P. called and he must have had a fight with his wife or something because he was very abrupt. We asked if he thought with her other conditions we should put her through another operation and he just shrugged. We asked if we didn't, how long would she have and his answer was 6 months or maybe 2 years. We asked if we didnt if there was suffient pain medication so she could be comfortable and his answer was any pain she had was probably from her sore bottom - he had never seen such a mess. Then added, I really don't know her history and walked away. My Sis was crushed. In 10 years this is the first time we have had such a problem and it was almost cleared up. In the 2 days she has been in hospital they have used disposable diapers, not changed her regularly and she may well be getting red again. Here we have just been given a terrible diagnosis and the doctors main comment was about her bottom. Ten years of hard work, an awful diagnosis and then a slap in the face. I'm still shaking and trying to process the fact that after all she has gone through to this point - what should we do? She survived uterine cancer 15 years ago, got a pacemaker in time to help her heart, takes seizure medicine, thyroid is not functioning properly but medicine seems to keep under control. When she was still mobile she fell about 5 years ago and broke right hip, then about 2 years ago broke the other one. Both required pinning operation. There is a cat scan scheduled for Monday and we haven't talked with her regular physician yet, but before this happened, we both felt that her quality of life has become so bad with the mind gone, we would never put her through any other surgery. But, that was hypothetical. Now we are actualy facing that decision or at least I am assuming it can be done. When do we say "no more" and not feel we haven't done all we should for Mom. If anyone else has had to make such a decision, we sure could use your advice. I know you can't make a decision for us. Just need a clearer head than I have right now. The only thing I keep relating to is both my Sis and I have pets and do everything possible for them, but if they were in the shape Mom is - mind gone, unable to do for themselves, laying in their own urine and feces until someone cleaned them up, we wouldn't leave them like that. It has totally broken my heart to make that decision for them, but feel that is the kindest. I don't mean that I advocate mercy killing for humans; but is God saying this is a way she can come to me sooner and not be in pain with the medicines the doctors have? I will talk with my minister in the morning, but can anyone give me their thoughts tonite. I can't even think right now.
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Hi Nancy....
I am so sorry to hear the latest about your mom...I know you and your family will make the right decision..One that is right for you...Noone else can make it for you.
Let your faith guide you, and know we are always here for you.
I know it is hard to hear...I too went through it...But there comes a time when such things are simply out of our hands.
This is one of the hardest lessons I learned being a caregiver to my own mother.
You said you were going to talk to your minister this morning...I know he will help you to be strong...Our minister was a godsend..Listen to him and keep believing..

My prayers are with you and your family....
PrairieGal
Dear Nancyo...

I am sending you such big, warm, melting, loving hugs. Take some deep, deep breaths. I know you have all the answers. You have done such incredible work with your mom as well as with your pets and they both parallel one another. You have also been an incredible support for others here in this short time that you have been in the forums.

You might want to get a second opinion, just to secure a doctor who has more compassion and understanding in your mom's condition until it is time for her to leave. Just in knowing that will make the burden easier on all of you, if you found someone you could trust and feel comfortable with, as well as feeling understood. I don't doubt the diagnosis, but it is the caring that is so important, for you especially. You also need to check out hospice when you can.. and if as the doctor says, she could have six months, let them write a prescription for hospice which is covered by Medicare...Hospice will not only provide the quality of care and support for your mother, but for you and the immediate family members as well.. it will be a blessing to have Hospice involved for they bring love, spiritual support and so much through their staff and volunteers to those they serve.

Once again, because it is your mom, you want to know that in your heart you did everything you possibly could.. but you also know and understand what the situation is.. you will make the right decisions as to whether or not to let her undergo more surgery which could also weaken her... go within angel... we are here to support you as well..

richest blessings..
love & light
Gail
Hi Nancyo,
I'm so sorry about your Mom. I'm taking care of my Mom who is 84 and practically bedridden but able to get to the bedside comode and wheelchair. She's having TIA's, has CHF, numerous lung and heart problems and has the beginning of either dementia or alzheimers so I can relate in some ways to what you are going through. She just got out of the hospital again from having pneumonia and has said that if she has to live like this she doesn't want to as she can''t do what she wants to do. If and when the time comes I don't know what I will do but she has all ready told her Dr's that she is a DNR. Guess I will have to abide by her decision since she has all ready made it and told them. My heart and prayers are with you as I know what a hard decision you are making. I've been through cancer surgery and chemo with my step-father - he lived 1 yr longer than they predicted.

I hope you will join in the chats and talk to us there also but know you are in our thoughts and am keeping you in my prayers and hope your minister can help you. You should also tell your Mom's GP how the other Dr. treated you so you can get a Dr. with some compassion. I wish you the best and hope you get some better news but if not I'm sure you and your sister will make the right decision for your mom. God Bless you and your sister and family.
Love, Peace, and Light,
Karen
Well, I have gotten over the initial shock of our latest setback and talked with my minister. We have a lady and has the wisdom of a minister and the compassion of a mother. Really feel better. We just have to wait till all tests are in and consult with the doctors. Am trying to keep my sense of humor also and have decided our home town would be a good place to build a real hospital. There must be a conspiracy there to drive caregivers nuts When we admitted Mom, we gave all info and tried to give them copy of our power of attorney. Lady in admissions said she didn't need it. After getting Mom settled in her room and asking lots of questions, the nurse said she was going off duty and someone else would be in to get the "Obligatory" 10 page questionnare they always want (and apparently never keep on file since we always have to fill out one no matter how recent she has been in). We waited and waited and then they came to take Mom to xray. We still waited in empty room so finally hunted up a nurse; of course, Moms room wasn't on her roster. She said we could fill out the next day, so we left. When I got home had a message on answering machine from hospital - needed to talk about Mom. Really scared me since I thought something had happened. Nope, they just wanted to ask all the questions by phone. I was returning their call and it was long distance for me. Anyhow, I complied and that was out of the way. She also said she would need a copy of Power of Attorney. Told her I tried; her comment was "admissions doesn't need it be we do". Guess those two departments don't talk to each other.The next day, Friday, we were told the scope test was scheduled for Saturday. Talked to several people and no one could tell us when it would be done. Saturday morning about 7 a.m. after not getting much sleep, my phone rang. Waited for aswering machine to get it since I get lots of sales calls. Just had a hang up. Couple hours later my Sis called from hospital. She had the same type call, then about an hour later another call - from hospital. Irate nurse saying doctor wanted to do scope but needed one of us to sign since they didn't know Mom had dementia and couldn't understand enough to sign - DUH - does anyone read charts. And why did no one say they needed that the night before when we asked so many nurses about the schedule? So Sis threw on clothes and went up there since she is miles closer. After the test, was when the doctor complained about Mom's rash and gave short responses to Sis' asking about surgery/pain killers, etc. His parting words were he wanted a cat scan Monday. Sunday was quiet - thank goodness - except they still hadn't gotten Mom an emesis pan or kleenex or footies so we shopped and got them. We also checked if they needed signature for CAT scan (see, we are learning) but said no. Again, couldn't tell us when. Almost asked if they knew what a chart was, but held my tongue. Monday we went up early and found the A/C on - not cold, only vent since Mom's diarreha was a little potent, but her bed is by the window and she is always cold anyway so having air blowing on her was uncomfortable and they only had a sheet over her. I couldn't find a nurse so I found the linen closet and helped myself to 2 large blankets. Waited all day since they then said inpatients were just fit between outpatients. No CAT scan. This morning, Tuesday, first thing, Sis got a call from social work at the hospital saying she was preparing discharge papers. Sis told her we hadn't even talked with doctor yet or know if surgery was planned, etc. Social work had note from scope doctor (the rude one) that we didn't want surgery so cancelled cat scan. I don't think inquiring about options constitutes a decision, but I guess he did. We called Mom's GP and he wants the CAT scan, told S.W. to back off since she wasn't being discharged yet and will consult with scope doctor after CAT. This brings everyone up to date. Where I live is just across the state line and we have a small hospital but have told my kids if I need one and can't make the decision, to take me there. Maybe in a small one, at least the departments TALK to each other. I just re-read this message and really rattled on but now I know why this situation is more upsetting than it should be. We used to worry we weren't always doing as much as we could but after all the faux pas from supposedly educated, degreed people and watching them let Mom get sore again, I feel quite competent. Good thing; who knows what tomorrow will bring in this saga. Thanks to all for your good wishes and will let you know how it goes from here.
P.S. Forgot to tell you that my call Saturday morning and Sis first call were both from hospital. On second call, the nurse began leaving message since she was getting heat from doctor. Guess he had sent for Mom a couple times and couldn't take her without the surgery form. When we got up there, I asked a nurse to please put a note in the chart (and a sticky note on Moms forehead) that both of us are by ourselves and sometimes can't get to phone if we are in bathroom, etc. We both have cordless phones and when Mom is at my house, Sis doesn't go outside without phone or calling me if she is going to store or something so that we aren't out of contact if there is a problem. Can't afford cell phones but that has worked for us. So told hospital if we are unable to answer, we are within minutes of getting the message and returning their call so please leave a message. Oh, the nurse also told Sis they had been calling all morning and couldn't get anyone; I had one call with hang up and no message and Sis had the same before nurse finally decided to leave a message and Sis picked up while she was still on the phone. So all morning was 2 prior calls which could have been only one if they just talked. If anyone thinks they will get a break if their loved one is in the care of professionals, think again. You have to be on call 24 hours a day and make a trip to the hospital if they forget to ask for something they need. We also have to be there at meal times because Dietetics bring in her tray and sit it down and leave. No one cuts meat, opens milk cartons, nothing. And she needs a little prompting to eat or just goes to sleep. Another reason care givers get grey hair Ok, I will shut up now till I have more news. Thanks, all, for listening and letting me vent. Really needed that.
Hi again nancy...
Boy do your "hospital" stories bring back memories..lol..It is good to see you have a sense of humor about some of it..
That ability to see the funny side is going to help you through a lot..
I was glad to hear your minister is such a compassionate person... ...makes up for the insensitivity of a lot of doctors running around out there...I have always said they need a course not only in medicine..but in how to deal with emotional aspects of patients/families..
Take care...
PrairieGal
Hi Nancyo...

{{{{N}}}} am sending you lots of loving hugs...can relate to so much of what you expressed and are going through. I hope you feel better everytime you let it all out... it's so important...

Truthfully, nothing shocks me anymore with the stories I hear.. actually they do, but I have sorta come to think that they are normal... i have seen charts rewritten daily because of the wrong drugs that were administered etc... it's amazing...we have to stay on top of everything and everyone... it is a strange balance when you think of it.
On one level we pray and put our faith and trust in God, the Higher Power and the Universe, and on another, we are always having to look after everyone else in order to protect the ones we love and care for.

Just know that we are here for you...please keep us posted...richest blessings
love & light
gail
Have made a little progress but still have more questions than answers at the moment. Last Friday the doctors had all made the determination that surgery could wait for the moment. The G.P. is still trying to determine what is causing the bowel incontinence; for some reason he doesn't feel it is from the cancer. On Tuesday she was transferred to a local nursing home for a while so they can get her bottom healed up again and try to slow the incontinence with medication. We have a meeting with the doctor next week and will hopefully learn more about the long term prognosis. For right now she is admitted as a medicare patient which helps money wise. She is in a room with a very nice lady who is very alert so that is a relief. Will check back in when we have more information. I do feel a little better about this whole situation. Perhaps the cancer has been there for a while and is slow growing. At least the decision whether or not to operate has been made by the doctor and not us. Glad to be relieved of that responsibility. I have even been able to enjoy this mini vacation and done some "playing in my woods", followed possum tracks and watched the geese and other birds taking advantage of the fish stranded in the flooded fields across the road. Am starting to feel rejuvenated. Only thing I am worried about now is Gloria. Her last post was after she had her attorney send a letter to her brother. I was going to send her an email but she did not leave her address. If anyone hears from her and she is agreeable, I would sure like to know how things are going for her. Love to you all.
Nancyo:
I am so glad that you have this short respite. I pray that it will help you regain strength.
I know the value of a good nursing facility with good professional people, quick access to a Dr., and quick access to a change of medications. My husband was sent to Lifecare of Dallas and they worked wonders. That was just before I began caring for him at home and I didn't realize the value of the respite at the time or how unusual it was to find such good care.
Thank God for Lifecare of Dallas. They got him off the respirator and helped him rebuild some strength in his arms and good leg. All while improving his mood after a month in intensive care. Good and compassionate professional people are sooooo very important. When he left the hospital intensive care, the Doctors and Nurses there doubted that he would ever be off his breathing equipment. That has been two years ago. And he has improved a lot although he remains on oxygen 24 hours a day.
I pray that God's spirit will fill your soul with peace and strength.
Sincerely, Nina
Hi Nancyo

I am so pleased to learn that things are going a bit better for you and that you are beginning to feel rejuvenated. Sometimes doctors diagnosis's and treatments can be a blessing in disguise.

As far as I know, Gloria pops in infrequently. I hope that we will hear from her as well... keeping her in loving prayers is better than worrying though. Worrying never seems to get us anywhere... except that stress builds as a result of it.]

Richest blessings...keep us posted.

Love & light
Gail
We had our meeting with Mom's G.P. yesterday. He said the scope doctor HAD removed most of the cancer with the clipper attachment on the scope. When the doctors reviewed the CAT scan they did not feel there was enough left to warrant further surgery. The diarreha was aggravated by this minor surgery and GP feels will eventually get more under control. He is trying various meds and assured us that whatever pain meds she needs to help with the sores which are now open sores will be prescribed. Even if addictive meds are needed, he feels it will not hurt at this stage. He doesn't feel that a colostomy will help because if the bowels can't be controlled, she will continue to lose necessary nutrients such as potassium which affects the heart even if large doses of supplements are given. I asked him if he was saying she was dying and he was. All things considered, if she can be kept pain free and cared for, I guess there is nothing more we can ask. Now we just wait.
Nancyo:
You are really at a hard point in this journey. I pray that God will give you peace and strength. Also, that you will have a good hospice group to help your Mom live her life until the end.
I think you are just wonderful to have helped your Mom through such a long physical journey toward the end of her life. I have lost family in the past and I know the need and the love that wants to keep them with us and the compassion that wants them to finish their life free of pain and suffering. I also know the exhaustion that comes with the last period, be it weeks or months. I pray that you can care for yourself enough that you will continue to be strong for your Mother and your family. I know it is not an easy thing to do and the stress level is off the charts. Don't forget that God's spirit is within "you" and available at all times.
With love,
Nina
Nina, sure did need a pick-me-up tonite. This has been such a roller coaster ride of late. All the years prior were a gradual decline but so much has happened to Mom in the last few weeks. I know it is in God's hands, but still feel the need for some control of her situation. I am so afraid she will think we have deserted her at the time she needs us most. Until these past couple weeks, anytime she woke up either my sister or I was with her and she was in familiar surroundings. This is really hard.
Morning Nancy...

My prayers are with you and your family during this oh-so hard time...
You are right though...there comes a time when it all is in God's hands, and as hard as it is, and as much as we want our loved one to stay with us...We must face up to harsh reality..It is never easy...
Be very proud you are the daughter you are..a special person who loves and cares...

Take care...
And keep posting...
PrairieGal
Hello NancyO

I am sending lots of warm, loving hugs your way. Receiving the prognosis as you did, is something we have all dreaded or will dread as caregivers. It isn't easy... and the wanting to control; to make the pain go away, to help your mom in any way that you can will remain until she takes her last breath. You are a loving, special soul as well as daughter. I know that even if your mom at times may think you have given up, her soul knows how much you have done and will continue to do within your own power. The rest unfortunately, is up to the higher power and your mom...something we hate admitting to but this is definitely part of the flow or circle of life.

It is a blessing that she is stable and comfortable at this point. Take some time to regroup and heal yourself from within. Take time to rest, go within and reflect on all the good you have done and will continue to do, so that you can be fully present in each moment when you are with your mom.

I know you are doing incredible work and so is your sister. Honor yourself for all you are doing.

Richest blessings
Gail

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