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Old 05-09-2010, 02:40 PM   #1
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Mom could be dying

So a few weeks back my mom seemed to be having trouble swallowing. She is 82. Alarmed we immediately went to a gastro. He set up a barium swallow x-ray and I presumed... it would show a tumor, if there was one. It didn't. We still had to do the scope but because I thought there was no cancer... I didn't worry that the first available spot was 4 weeks out. The gastro thought it was spasms.

My mom didn't make it that long. Friday I called her and she was out of it. Had nausia and was vomiting. I rushed her to the ER and they didn't seem too worried. She has lost about 30 lbs. Until the next day they said the CT had shown a thickening of the stomach and esophageal wall. That didn't sound good but she had reflux so it seemed like that could have inflamed the wall. Then the next day I hear, no, that is unlikely and the thickening was of a type that was severe. Today, the doctor comes in and says... "it doesn't look good." Apparently some lymph nodes are inflamed and he is quite concerned.

So the esophageal scope is tomorrow. That will tell the tale. But I think this is going to be malignant and perhaps advanced. Mom has really been suffering from this problem swallowing since December but covered it up.

I am trying to be brave but this is it.... I don't know how I am going to deal with it. My dad died last year, and it shockingly didn't bother me because he had dementia and he went quickly overnight. We didn't know anything until he was already dead. He had no idea he was dying and really didn't know us. So it was like he had died years ago and it was just his body that survived. But mom is fully functioning and this sort of cancer is a nasty way to go. It is my hope that she will go quickly but I fear her falling apart and also, suffering.

Worst yet, I have a terrible boss who is a bully. I just cannot deal with him right now. Friday I told him about my mom and that I would have to leave 1/2 hour early to get her to an ER asap. His response -- why didn't you do this thing I told you to do before you left? The job already is fully packed. I am so busy all the time I cannot afford to miss anything... this is going to make me miss things. Left and right. If I can even concentrate.

Help?

 
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Old 05-10-2010, 06:16 PM   #2
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Ivorygirl HB UserIvorygirl HB UserIvorygirl HB UserIvorygirl HB UserIvorygirl HB UserIvorygirl HB User
Re: Mom could be dying

Hi Kath ~ First, I am so sorry that you are going through this. Alot to take on amidst your job and everything too.

Your mom is in the hospital where they can monitor her pretty much during the day....I know your priority is her well being.

Is there any other family member who can help you through this by sharing in the crisis???

I would imagine that it is difficult for you to even concentrate at work with all of this going on but perhaps there is a way that you can do half days with somebody available to be at the hospital with your mom??

I just lost my mom, she was 74 and she had biliary duct cancer (cholangiocarcinoma). Towards the end she too had great difficulty swallowing and was unable to keep anything down. Shortly after that she passed away......I don't know what lies ahead with your mom but my mom went from perfectly healthy to passing on in just 2 1/2 months. And the difficulty swallowing and inability to keep anything down happened the last week or so.

If it eases your mind, there wasn't much suffering. I am thankful for that part but do miss her very much. To have wished her to stay longer would have been selfish and for my own purposes.

I pray that you get some answers tomorrow and that your mom has no unnecessary suffering.

Please try to put the oxygen mask on yourself if at all possible. And if there is any family member who can help take some of the burden off of you PLEASE call them in to help.

Sending you some ((((HUGS)))) ~ Ivory

 
Old 05-13-2010, 05:12 PM   #3
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Re: Mom could be dying

Quote:
Originally Posted by Ivorygirl View Post
I just lost my mom, she was 74 and she had biliary duct cancer (cholangiocarcinoma). Towards the end she too had great difficulty swallowing and was unable to keep anything down. Shortly after that she passed away.....
Thanks for your response. I am sorry about your mom. {{}}} I have a brother but he is just no help. I mean he means well but I don't think either of us are ready for it. In fact one reason I get such crud at work is my boss thinks my brother should help... too bad he doesn't have any say over brother.

My mom has stomach cancer that moved into the esophagus. It has spread into the lungs, spleen and lymph nodes. Not good. I can't get it out of the doctors but I gather it is 5-6 months on the low end, and 1 to 2 years if EVERYTHING works. IE radiation and chemo.

She is going to do that. The radiation supposedly will shrink the tumor enough so she can eat.

My boss is still a super jerk. I spoke to the HR people and they tell me I have 12 weeks of Family and Medical Leave Act I can take. I have about 6 weeks of leave .. so of those 12 weeks I can get 1/2 paid for. For the rest I can ask co workers to donate. Our jobs only allow 240 hours of leave to be carried into the next year so if say 10 people donate just one day -- that is 80 hours. However I would need to know when she would be getting sick.

I think she is ok but as it is setting in I don't know if she is ok. The good news is the hospital will drive her to treatments and also set up a visiting nurse for her. We also have a home health care policy that pays for home health care and home hospice care.

Taking it one day at a time.

 
Old 05-13-2010, 08:06 PM   #4
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Re: Mom could be dying

Hi:

I am sooooooooo sorry to hear about your Mom. My Mom died this past February, 2010 from cancer also. Started as uterine cancer and was also found in lymph nodes. We miss her so much. SO MUCH!

There is so much to say on this, but for now I have to be short (sorry). I wanted to tell you about the leave from work as I was going to do it. Check about your insurance. (By the way, I live in New York State, so not sure if these rules apply to your state).

Your insurance will not be paid on the family medical leave act.
There will be an interruption in your services so that could mean next year your vacation will be pro-rated (meaning that you will get a few days less vacation time).

You get your "own" 6 weeks off (of the time you have accumulated yourself).
PLUS you get the 12 weeks family medical leave act.
So, that will bring you to 18 weeks. THEN you should also get an ADDITIONAL time if your co-workers donate days.

I really thought I was going to have to use the family act leave, but did not. I know the above doesn't sound really that important when we are dealing with somebody we love so much and nothing else really matters but them and their health and you would do everything in the world to help your Mom. I know the feeling very very very well. I struggled with the decision. But my Mom was in the hospital and well taken care of and I visited her every single lunch hour and right after work staying as late as I could.

What I would do:
Take your 6 weeks. Not right now. But see how she is after a few treatments to see how well she is responding to treatments. You can take your 6 weeks later.....when and/or if she really needs you.

Take the donated days.

And THEN if you need additional time, go to the 12 week Family act.

I was a Union Steward for 18 years, so have a pretty good understanding of all this. Our payroll department person explained all this to me and in the beginning, it is good to stay on the payroll as long as you can. Also, things could improve, and you may not need the 12 week leave at all.

I am thankful that they explained it to me this way, so do just a little more checking on your part, ok?

Again, I am really truly sorry to hear about your Mom. It totally sucks. I have no regrets whatsoever as I was there for my Mom every second that I could be....which was every single day for as long as I could. But you do have to remember to take some time for yourself. Don't feel guilty if there is one day where you just HAVE to stay home and catch up on some rest. There will be alot of decisions to make.

Take good care.

BlueDiamond.

 
Old 05-14-2010, 03:38 AM   #5
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Re: Mom could be dying

Quote:
Originally Posted by BlueDiamond View Post
Your insurance will not be paid on the family medical leave act.
Well how typical that my HR never mentioned anything about this. I went to them and asked what my options were and they told me everything I already knew. I work for the Federal Government so maybe they will pay it.

However, I need to use FMLA because god love my boss... I think he would try to have me fired. So I am not sure using leave time would be a safe option. He can't retaliate against me under FMLA. He can with regular old leave.

I really think it might not be healthy for me and my brother to be hanging around too much. So I don't plan on being too much of a hoverer until it seems necessary. It is hard to tell. What I read on the net is very negative and seems to indicate she won't make it the year. But the doctors are much more upbeat. I think perhaps they want to keep spirits up but I need to know what is really up.

 
Old 05-14-2010, 09:09 AM   #6
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Re: Mom could be dying

Oh Kath, I am so sorry to hear this news, it must be shocking as much as you prepared yourself for it. As it will turn out, you WILL find the strength to get through, it comes from the very core of you and there is beauty in giving back to our parents after all they have given to you.

The most touching moment I had with my mom was when we brought her and my dad down to FL, my brother and I. You see, we had learned how precious time was and to seize every opportunity because we had been through it having lost our youngest brother only months before mom.

Yes, it felt as if the wind had been knocked out of us but somehow we got ourselves up and went back into the ring....to fight the next round.

So the moment I wanted to share with you was when my mom couldn't bath herself, she was still able to stand up pretty well and I took her into the bathroom with some Bath & Body works lavendar scented gels, lotions, etc.

I cleaned her up ever so gently and she cooed and thanked me up and down. I know that it was somewhat difficult for her to allow me to reverse roles and I made light of it saying how she was at "Ivory's Day Spa" and she deserved to be pampered for a day!! She truly enjoyed that pampering and there was such beauty in being able to do that for her and share that moment together as mother and daughter.

The other moment was when each night my brother and I would tuck mom and dad into bed. Mom was unable to get to the lying down position without alot of pain but if one of us supported her back while the other lifted her legs it made it more tolerable.

Each night we did this and there came a night that my brother and I were watching the Olympics and my mom called out to us telling us it was time for her to be tucked in. How often is it that two grown children get to tuck their two elderly parents into bed???!!!

Such precious memories that make me so glad that we seized that opportunity, dropping everything else to have that precious time together as a family.

Turns out that mom passed only weeks from that week we seized together as a family. My brother and I made up an album of pics for mom to bring back and she told us it was the best vacation she ever had!! And it was.

So, Kath, as BlueDiamond points out, you will need to micro manage this using the resources available to you and take that time when you most need it.

Perhaps having a dedicated time that is yours with your mom (lunch or dinnertime) that each of you look forward to around the nurses and other resources will work out.

With us, I was snowbirding in FL, trying to take a respite from losing my youngest brother and flew up when mom had some procedures to be of extra support to her and Dad. My brother lived about an hour away and would visit in between. We filled in the gaps together so you might try to assign times that your brother needs to fill in a little bit as needed too.

Sometimes, other family members just don't know what to do unless told to in situations like this and that may be how it is with your brother. Try it out, tell him that your mom needs somebody to be there for this or that when you cannot giving him some notice to clear his schedule. I think that in the future he may be very thankful to you that you assigned him such times so that he could be a part of this journey.

I wish you love and special moments as you make this journey with your mom. Remember how important it is to take care of yourself too....putting that oxygen mask on yourself before you assist others, something we sometimes forget to do.

I hold you and your family in my thoughts hoping that as you journey through the months ahead that you find precious moments that you will tuck into your heart from which to pull from when her time finally comes.

((((HUGS)))) ~ Ivory

Last edited by Ivorygirl; 05-14-2010 at 09:17 AM.

 
Old 05-14-2010, 05:31 PM   #7
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Re: Mom could be dying

Quote:
Perhaps having a dedicated time that is yours with your mom (lunch or dinnertime) that each of you look forward to around the nurses and other resources will work out.
Thank you. {{}}

Well we are already in trouble. My brother and I both work and we work about 1 hour and 1/2 away. So it is impossible for us to really get back and spend time. But already my brother is not living up to my expectations. I am taking personal leave time about 1x per week to run errands and run the house. When I asked him today he just couldn't come up with IMHO any good reason he couldn't do the same. He says... he is a bank manager he can't take anything but Family and Medical Leave... excuse me... I freaking work in a much more important job.

Anyway, mom is being discharged from the hospital. They are discharging her to a nursing home. They want to see how she does on the radiation while in a nursing setting. I am kind of irked because they didn't really go over that. I don't know if we can handle if she has a bad reaction. Oh and the hospital has already lost her clothing... which she only really had one pair of shoes.

Franky, I don't think she looks good. She threw up today and her face is kind of purple under the eye area. She can't eat at all. But if she is being discharged such must have improved a bit.

I am wondering about psychological resources. She would likely refuse anything but priests and deacons... but she doesn't want me to call any.

 
Old 05-14-2010, 07:04 PM   #8
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Re: Mom could be dying

Hi Kath ~ I am sorry that you must go through this. I don't know where your mom is but I would try to inquire about a pre-hospice care that can be started with your mom. Through them she will have a team of social workers, nurses, oncologist and even deacons who will work with her and the way it worked with my mom the same team would follow through once she is ready for full Hospice Care. This team can work with her in the nursing home if it works the same way.

I am sorry you are so far away and carrying this all alone with minimal help from your brother.

I was fortunate in the sense that I don't work but have a permanent partial back disability so when my brother was unavailable I would go stay for longer periods of time with mom if need be. I was about 4 hours away and we would pretty much share the responsibility but he was limited in taking time off and his job involved alot of travel but still he took time off to share in whatever needed to be done.

It may be good if your mom is in a nursing home facility in the beginning where she can be taken care of and monitored while she undergoes the chemo and radiation treatments. It will be a transition for her but will ease your mind and make it easier for you to support her and still work as need be knowing that there is around the clock care.

Is there any way that your job will allow for a day a week where you can dedicate to your mom until you feel the need to take the FML??? I guess for a while you may need to give up some weekends??? And what about your brother, can he possibly share in the weekends....banking businesses are closed on weekends so surely he can at least do that.

Keep your chin up....I know this is so difficult, somehow we find the strength to get through it.

Your mom certainly is lucky to have a daughter like you.

Keep posting and see if there is some support for yourself as well. It's alot to take on and so important to take care of yourself too.

Sending some extra ((((HUGS)))) to get you through ~ Ivory

 
Old 07-12-2010, 04:39 PM   #9
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Re: Mom could be dying

Hi:
I wanted to let you all know that my mom did pass in early July. The two months were horrible and I think the medical profession is really in dire straights. First she went into the hospital and they released her to a nursing home for "rehab" - mom had 2 weeks of radiation and it was torture. She was throwing up all the time.

So she was released to her home and couldn't make it two steps. I took her back to the er and she went back into the hospital again. She was bleeding internally from the radiation and it appears no one cared. No one did any tests at the nursing home to watch for this. Then they got us to put in a feeding tube and they released her to a rehab hospital.

The rehab hospital took one look at her and told us she was dying. They sent her back to the er. We were confused. They were still doing radiation and it had only been 6 weeks. One more week in the hospital and finally, back to the rehab hospital again. One week there and no improvement at all.

Mom kept acting scared and moaning and she knew what that meant. She was having delusions and the rehab doctor told us it would be any day now. We didn't believe it but we put her on morphine and ativan. She was out of it. We set about getting a hospice. We were told we had until July 19th before we had to look into that (medicare payment). Just a few days later mom passed. We couldn't, and can't, really believe it. It was less than 7 weeks.

I do feel like I need support but can't really see how anyone like a counselor could help me. Anyone on here feel free to contact me here. Thanks for all the support here.

 
Old 07-12-2010, 08:12 PM   #10
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scribytoo HB User
Re: Mom could be dying

Dear Kath,
I'm so sorry to hear of your Mother's passing and more of the difficulty she went through with her treatment. It is unfathomable that there was no one who could help you through this difficult journey. My Mom passed away June 16 after 6 years in a care center where we discovered what true compassionate care was all about. Her passing hurt none the less but, like your father, we had already been mourning her for several years. If there is anything you want to "talk" about, I would be willing to visit with you. You may need to take some time from work to deal with your own grief. I have a friend who works for the Fed. Govt. and I do know that she has been able to take leave to deal with both family and her own medical problems. Remember that HR should be there to help you, regardless of your boss's attitude. If not, do you have a grievance policy?
At the very least, please accept my sincere condolences.
Linda in SD

 
Old 07-13-2010, 10:41 AM   #11
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Re: Mom could be dying

Kath ~ I am soo sorry to hear about your mom's passing. Believe me, I know pretty much how it feels getting the news that something is up, denying that it could be anything more than something that can be taken care of with time, and then so quickly being swept in by medical procedures that only confirm your biggest nightmare. Yes, it happens too fast with hardly any time to breathe.

I am still struggling myself but have been blessed with many reminders of my mom's continued presence in my life. And if you open yourself enough to it you will be able to feel your mom's love too.

It doesn't happen right away but it does. We have so many wonderful memories tucked in our heart to pull from whenever we need them, that comforts me and helps me through the difficult times.

But then of course, I am at times taken over by this overwhelming sadness....it is unexpected and usually during a time when I would need my mom the most.

It's gotten better and it will for you too in your own time.

I can be here for you in anyway you would like. I will check in daily to see if there is anything I can do to make it easier.

For now I hold you gently in the light and send you many comforting (((HUGS)))).

Keep posting and letting it out....it helps to talk about it with others who have lost a loved one too.

I lost my little brother and thought that was bad but losing my mom was even harder.

So I understand the pain and will share yours if you want me to.

((((HUGS)))) ~ Ivory

 
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