Mom Update Need advice on what to do ? ... - Kidney Disease

Kidney Disease

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Mom Update Need advice on what to do ? devastated

gisella8 profile image
9 Replies

WE got back the results from pathology - she has pancreatic cancer that has extended to lymph nodes. They are unable to give a stage#. She is 88 years old with other problems , diabetes, bp, arrhythmia. Her left kidney is no longer functioning and her right kidney has a obstruction. GFR is at 20, Her water output is at 700. She has had no pain anywhere ever the whole time and even when she was home. no trouble breathing, no problem with urinating. I think they plan to not unblock the kidney and send her like that to hospice or home. The family has to get together to help decide where she wants to go. They do not know how much time we have! They wont say. . Doesn't the kidney need to be unblocked with a stent or bag before going to hospice? Will the blocked kidney be more painful and she will suffer terribly more ???? Wont it expedite things? Right now I am not able to feel or think or move. My fingers type , I write, I see her face, I hear her voice.

I must find a plan ticket. Shes in Florida . I'm miles away I'm still in disbelief.

What should we do about the kidney? please help! Any advise appreciated.

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gisella8 profile image
gisella8
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9 Replies

One thing I do know from first hand experience is people with dire health problems can hang on for a long time. There is no knowing how long, it is all guess work based on experiences. My mother lasted 6 years after being given months to live. Many times she knocked on the pearly gates only to fight back for another day. All that can be done is the best you can do for her; because when the end does come you don't want to be thinking you could have done more. Be satisfied you did what you could at the time.

You need to rely on the medical professionals knowing what they are doing is the best they can for her. If you are not satisfied then ask them to explain their actions to you so you can better understand the process they are going through.

Jayhawker profile image
Jayhawker

What an unbearable situation... My heart goes out to you. It’s such a gift that your mother is still feeling no pain. I agree that you’ve got to trust the doctors are doing what is in her best interests.

My mother had terminal colorectal cancer a little over 20 years ago. She hadn’t seen her siblings due to her illness. After conferring with her doctors, I travelled with her to her home town in upper-state New York. It was half way across the nation. That trip was the hardest thing I’ve ever had to do. Everything we saw was the last time mom world see it: her childhood home, the lake where she swam as a child, childhood friends, siblings. I’ll never forget the look in her eyes as we drove from the Adirondack Mountains, where her home town was located, back to Albany, NY to fly back home. We both knew she would never see anything we’d just seen again.

When we got back home, my siblings and I planned a week of family activities so she could see and spend time with all her children and grandchildren. By that point she was a lot weaker. She slept quite a lot. But she so enjoyed having her family around her when she woke. We adjusted activities to match her stamina. We watched a lot of old movies, favorites from her early adulthood. Her grandchildren really enjoyed the movies.

She lived about 3 weeks longer. My sister and I took turns staying with her over those final weeks.

In hindsight, the medical care that mattered was that which assured she would not be in pain. But the most important thing for mom was to be surrounded by family.

I still remember coming back to her house after making a run to the grocery store. A young, very young, home healthcare nurse had my mom and my sister sitting side by side on the couch and was lecturing them. When I came through the door the nurse was saying, “Now is the time to make memories!”

My mother’s eyes were tearing up. My sister looked guilty. (She was struggling badly with the diagnosis and was still in denial...) I put the groceries down, turned to mom and said, “Silly us..,We’ve been making memories our entire lives...) Mom smiled and said that, yes, we had.

It was the time we spent following her terminal diagnosis that was most important to mom and us. It was in many ways the hardest time in my life and yet in other ways was time that I cherished deeply.

Jayhawker

Blackknight1989 profile image
Blackknight1989

Wow that is devastating and so sad. I am an only, adopted kid and my parents were and will always be my hero’s. I try to give back as they gave me the greatest gifts of unconditional love and unparalleled opportunity had my birth mother not made the courageous decision to give me up. I lost mom in 2008 and dad in 2011. Losing your parent is tremendously tough. So please, please, please don’t think I am uncaring, not compassionate or don’t have an idea of what you are going through.

However, all that being said please don’t put mom through unnecessary procedures. It is my understanding that a blocked kidney does not always cause pain and that the body is a wonderful creation that can deal with that situation itself much like some people with cardiac blockage develop new supply systems. However, I am not a doctor and don’t know for sure so best advice is to question her doc seriously and deeply to understand yourself what will happen with the kidney and to thoroughly understand yourself expectations for pain for mom. Also, you need to have a conversation with mom about what she wants and if she has all necessary medical documents in place. She may have taken all the decision making out of your and other close relatives hands with a medical POA and health care proxy. Additionally, hospice will manage any pain symptoms aggressively and thoroughly, at least they should.

My mom had Alzheimer’s and it was, unfortunately, a relief when she passed as she had lived as not herself for far too long. Dad was different and he made the decision to not continue to eat solid foods due to his loss of the ability to swallow and contracting MSRA. I reacted by getting so mad I didn’t talk or visit with him for a day the day he told me that information. I realized that he was 87 tired, sick and lonely from missing his bride of 58 years and was ready to go see her again as a whole entity. So I spent the last 14 days in his hospital room and it was magical as he was lucid and in good spirits for 13 of those 14 days.

My point, I know how hard it is to let go of your parents especially when it is relatively unexpected. However, you must do it and respect them and their wishes as you did when you were growing up. You want to be selfish and hold on because you love them so much and maybe you don’t understand what they are going though with their medical conditions and age. Just in the 10 years since dad past I better understand what drove his decisions with the pain and life complications I have developed from my various illnesses. Plus the diagnosis she just received is so, well for lack of a better word and I am so sorry for using this, untreatable. It doesn’t mean you can’t spend more quality time together it only means the quantity of time is limited.

Finally, I am sorry if I offended or hurt you in any way as that was NOT my intent. Instead I only wanted to relate my experiences with a similar situation I had with the GOAT of dads. I wish someone had done the same for me as I have guilt over that day of childish behavior I exhibited with him when he confided in me at age 44. I wish you only the best in your tough situation and I will keep you, mom and family in my thoughts and prayers. In you are comfortable doing so, please keep us updated. All my best wishes!

ICSL profile image
ICSL

I’m so sorry to hear about your mom. I’m having to deal with my dad’s end stage kidney failure and it’s really tough for all of us. But I’m constantly reminding myself that it’s the quality time we can get to spend and create now that matters. Cherish time and let her not suffer from pain. It’s a journey we all have to take, it helps if we take it with acceptance and love. I hope this helps. Sending you my positive energy.

Darlenia profile image
Darlenia

This is heartbreaking. I will never understand why our lives are numbered. Cherish every moment. One can never spend enough time with loved ones. Laugh, cry, make memories. Memories are priceless, they have no expiration dates. Explore options too for more quality care and possibly a longer leash on life. But above all, hold her tight. May we all look forward to joining our loved ones in spirit when that time inevitably comes - whether that is now or later. Surrounding you with hugs and prayers.

RhenDutchess123 profile image
RhenDutchess123

In reality...88 years is a good long life...and even though you are devastated to lose her just remember how blessed you are to have had her to begin with...sounds like she raised caring and loving Children and her job is done...kiss her...hug her.. and let her rest..

There are no simple answers and surgeries could make her final time stressful with healing...

It may be time to Let Go and Let God..

Bless you and your Family

Thank you Lord..for all the wonderful Mothers that have walked this Earth

WYOAnne profile image
WYOAnneNKF Ambassador

Mom's are very special people. Mine died at 78 of ovarian cancer. She opted for surgery to remove ovary and as much of the cancerous tissue as possible. In hind site that was the wrong decision. It shortened her life and the time we could have spent with her. I still feel guilty since I never saw her before she died. Surgery was on Saturday and she was gone on Tuesday.Just enjoy the time you have with your Mom. Don't put her through any surgery, and trust her doctors. If she is still making urine and is not in pain, that is a blessing. Hospice will make sure she is comfortable and not in pain. Spend time with your Mom!

Prayers and positive thoughts to you and your family.

Raji838 profile image
Raji838

Gisella just read ur mom' sit. its heart rendering and i just can imagine ur condition from the other end of the globe. its very difficult but you and ur family have to hold together reach out to ur friends have faith.

RoxanneKidney profile image
RoxanneKidney

Yeah my mom has a rate stomach cancer. Most people last less than six months with it, and she lived three years. The chemo was basically for managing symptoms. Enjoy your time. If she is not in pain. Go home and live life.

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