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Mother, Hypothermia, IV vs. Tube Feeding = so difficult! 
Started by fjp999
22 Jan 2015, 8:09 PM

Hello all,

I discovered mom in a hypothermic condition one afternoon due to the head nurse deciding mom was at the end of life and no longer needed to be properly clothed! I can go into more details if anyone is interested but...

 

After warming mom up she responded pretty well to me. She always has responded better to me than to most since I have always done the basics of looked, listened, touched, etc!

 

In speaking to the Admin (who is also a nurse) and my mothers doc - after many balls were dropped - mom was finally put on IV fluid and Vitamins. An agency was contacted to investigate the situation. The top admin of this agency is somewhat of a friend and hinted that I have a very good case for a law suit. That is not my interest but just the best care for my mother! I have not heard anything about the investigation...

 

After a number of weeks on the IV the nursing home Admin called, the end of last week, to say mothers doc believes the IV is not doing her any good and the next step would be Tube Feeding. The doc and the Admin both think it wont really do much good for mom and the IV is probably working her heart negatively.

 

I have my own health issues that make it very difficult to be at the side of my mother much. I have chronic fatigue syndrome as well as insomnia and a few other serious long term conditions. My big goal was to get my mother out of one nursing home where she was in a near coma *the horrors of the feeding tube left all of us believing End of Life = No to ALL THE BELOW!* - bring mom and dad together to the same nursing home room where they have been for a few very good years. Making that goal happen nearly put me into my own coma with the chronic fatigue and I am still on the road to recovery all these years later.

 

I know that when I go up to visit mom I will get her to respond with bright eyes, strong hand gripping, mouthing words and attempting to vocalize! That is not what the doctor or anyone else is seeing. The Admin does say that moms vitals are all stable. Color is always good. Responds a bit when spoken to very loudly, etc. A bad flu epidemic went thru the home. Good measures were put into place by the Admin but many patients got the flu. Mom & dad were some of the few that did NOT. Lucky or maybe healthier than most *even after all mom has been thru!?!

 

I believe it may be time for mom to rest but I don’t know if she is really getting the best care from her doctor! Of course, no one is going to spend the time that I spend and I also know I cant spend the energy I should due to my own health issues. I also believe that the hypothermic condition mom was put into, for probably 6 to 8 hours, may be irreversible!

 

Those are the thoughts I am having. Should I stop the IV feeding? Just continue the IV feeding? I don’t think I want to put mom thru the feeding tube surgery and all that! but maybe it would be best for her?!?!

 

Am I missing anything? What is everyones thought on this difficult decision?

Thanks so much for any help in this,

frank

 

p.s. I have read thru the article “When is the right time to stop tube feeding?”.
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Reply by Nouce
22 Jan 2015, 11:39 PM

Dear fip999,
 
What an difficult situation you are facing! I went through the death of both parents two years ago. We had to make several tough decisions. I hope you can have faith in your own impulses and not judge yourself. Life is yours as well as your parents'  You need to go forward. She needs to know you love her. I personally think surgery for elderly people is seldom what makes their life better. Sending light your way.

Nouce 
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Reply by oldbat
23 Jan 2015, 12:54 AM

Dear fip999,

I can't answer your questions about IV versus tube feeding.  Not qualified.  But I sympathize strongly.  You have a very tough row to hoe, and it sounds like you are doing a great job.  The only thing I can suggest is that you be there for your Mom's IV feeding, and see how she she responds to that.  If she doesn't seem too happy with the process it may be time to try the tube.  She will find a way to let you know what is best for her.  You've probably gone this route already, but do try to be guided by her.  Your own health must make all this very difficult for you.  Do you manage to get enough rest?  And are you eating properly.? My husband is also in long term care, and I'm all he has essentially.  Would have to anwer "no" to both questions I asked you!  And I am paying the price.

You don't mention your Dad.  Is he in better shape than your Mom?  If so, could he maybe try and comfort her a bit? Just a thought.

I echo Nouce, who always gives wonderful advice.  What both your parents need most from you is constant reassurance that you love them.  It's amazing what those three famous little words can do for the morale of people who are very ill.  I see my huband two days a week, for several hours each.  Can't do more as I am quite badly handicapped.  But we 'phone each other several times a day and each conversation, along with each visit, always ends with those three wondwerful words.  You need to hear them, too!

Do take care of yourself, fip999, and please let us know how you are doing.  This group is warm, caring and sharing.  We'll all all be thinking of you.

oldbat
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Reply by fjp999
23 Jan 2015, 5:07 AM


Dear Nouce,

Healing light is much appreciated.

I agree that taking mom away from her comfort zone and to the hospital for surgery will not be the best and know she would not want to go thru all that process.
 

I also know that mom understands I was there giving 110% of my energy to her when everybody gave up on her! We always had a "Good Night" ritual of love you kisses which I believe can given even if we are not in a physical contact.
 
Lastly, thanks for asking about judging myself. Wont go into the past history of it all but I am pretty sure most of this is destiny.

Dear oldbat,

Thanks for your very caring thoughts and questions.

The problem with chronic-fatigue syndrome is that when I do get rest it is never recuperative! I actually have to fib a bit to friends and family about visiting mom and dad because very few understand cfs! Add insomnia to cfs as well as a number of other long term chronic issues and well... I dont have much energy now but try my best. Other than the rest I eat very well, get good exercise - just put up a pilate machine!!! and my therapist is always amazed at my positive attitude. It really is the only way!

The IV is a constant drip and I dont think mom is very aware of it. It would be somewhat familiar to another med that would use an IV... but a feeding tube would be a whole other ball game! As the IV is thru a vein it is suppose to be hard on her heart but her vitals have been constant and I cant see starving her of any fluids or vitamins.

Maybe someone more knowledgable than me can chime in on the above. From what I was told by the nursing home Admin the IV fluids were a constant but the IV vitamins were once a day or something like that.

I suppose that if mom does go it will be her heart anyways and feel more comfortable with her being hydrated than starving her of it all.

Sorry to hear what you are going thru yourself oldbat! I went thru that the first go when mom was in the near coma and all near her gave up but I saw life in her and gave 110%! Many of the nurses around her called what I did a miracle but I just called it caring for mom! After my goal was done I slept on average 20 hours every day! It is really terrible what care-givers have to go thru to make sure our loved ones are properly "loved"! and the care-givers get that big hug back  Wink

 p.s. It is rather difficult to describe dad... he is doing great but not so comforting to mom. He took so much care of her when he was able to so now maybe he is taking his own vacation!
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Reply by KathCull_admin
23 Jan 2015, 2:21 PM

Welcome to the forum fjp999, I am glad you found us. As you have already seen, our members, like Nouce and Oldbat – understand and care.

What you said about caregivers made me think of another thread on this forum started by Oldbat, But who advocates for me?  On this thread you will meet others like Jimmie and Xenia to name a few who can perhaps support you virtually through their words.

 Ask a Professional is another resource on this site. It is made up of a team of doctors, nurses, social workers, spiritual care providers and ethicists who provide support and evidence based information to help patients and family members make informed choices.  You might find it helpful to talk with them as well.

I am just wondering who supports you?

As Oldbat said, please keep in touch and let us know how things are going. 

Katherine
 
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Reply by fjp999
23 Jan 2015, 3:24 PM

Thank you Katherine,

I have a super busy day this afternoon but wanted to say THANKS and I will take advantage of all those written above.

Yes, seems I have won the golden ticket.

Hope everyone has a special day.

until then,
frank 
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Reply by Mark99
23 Jan 2015, 5:44 PM

FJP

I read your post with a heavy heart. Your care for your mom and yourself is a difficult road to navigate with all the emotional and heart breaking turns and struggles. We, on one level or another, have been there and know what you feel. Yet to your caregiving there is the added issue of your health. This pains me to see what you are going through to get to a place where you can find some degrees of equilibrium and balance in your life.
 
My first thought is that your response to the law suite is smart. Unnecessary complications are not called for now. But I would add from my own perspective you may want to hold on to some records, make some notes, keep a diary, and not sign any document. Just to have those in case the future holds some different paths for you. 

Regarding your health. I know while I was caregiver for Donna I found myself exhausted some days. But for me it was less physical and more emotional. I would come home from a consulting job and sit on the stoop wondering what I would find when I went in. I worried each and every test and struggled to try and give the best care I could doubting each and every step. But looking back I can note two points. One, doing the care though hard was my job and meaning and purpose. It was my place my world. So it kept me focused and going. Second, following Donna’s passing I embarked on a very active and difficult plan to write and take control of my emotions and reflections. Those two are connected in that the first is the experience and the second is the time we have to reflect. They both work in unison to bring some meaning to our lives following the loss of a loved one. It is our ability to carry on and hold the memories we create that gives us meaning. Below is something someone told me about loss that may prove valuable…or not. 

"Freud (I was told) used the word CATHEXIS to talk about attachment. My supervisor talked about the process of grief being the work of "DECATHEXIS" and that is the tying off the threads (the warp & the woof) of the tapestry of the relationship. All the threads that make up that tapestry have to be tied off, the tapestry completed. The tapestry remains and is preserved  through that tying off of the threads that formed the relationship. And it's hard, time-consuming work."

 

I think the point here I am making is that for me I knew there was not going to a be a happy ending to our story and I wanted to ensure that I had the chance to do what I could while she lived. And I could understand and embrace what was after her passing.  

I hope this helps. Be strong and be aware we are all here for you with you. Our collective experiences and support are key in all our lives. 
 
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Reply by JennJilks
25 Jan 2015, 3:18 PM

This is a difficult time as we approach end-of-life. I believe that as our bodies wear down, we wear out. I have seen nothing good from feeding tubes. I research and wrote about it after my late friend was put on one. I believe that she was unable to process food, she was choking a lot, and yet the doctor and family made the decision.
The surgery, on someone so ill age 95, was hard on her.

Considerations about getting a feeding tube - dysphagia

In part:
If you are making this decision for your loved one without any discussion, it is important to distinguish what it is they would want and what kind of quality of life they would ask for.
    • Will the treatment make a difference?
    • Do the burdens of treatment outweigh the benefits? 
    • Is there hope for recovery? If so, what will life be like afterward?
    • What do I value?
It's a matter of quality of life, I believe. Sometimes, if making a decision means not doing anything.How would your mother want to live her life: being force-fed through a tube, when she is unable to feed herself? What kind of life is she living? 
How much longer do you think she has?
Do you thinnk there is a 'cure' for her?
These are all questions you can answer.
I wish you the best with your own health issues. I ended up on antidepressants, after caring for mom and dad.  
Take care, I understand how difficult this is. My husband, confronting prostate cancer, and I have had the end-of-life discussions. I know what he would want, and that has comforted me.


There is a difference between futile treatments, and keeping a patient comfortable.
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Reply by JennJilks
25 Jan 2015, 3:19 PM


I have found several resources

1. Deciding on a feeding tube (PDF) from St. Joseph's Hospital


2. FYI Feeding Tubes (PDF) from ALSA.org, it explains the different types:


    • Percutaneous Endoscopic Gastrostomy (PEG -through the skin into the GI tract through a hole in the stomach).
    • Nasogastric – NG tube, 
    • Jejunostomy – J-tube
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Reply by fjp999
25 Jan 2015, 9:44 PM

Sorry for the bit of delay in getting back to everyone! 

Friday I had a therapist appt (not physical) with a transport pick up *must be ready 1 hr before appt* only 30 mins for therapist so not really much time to discuss things going on with me & mom so... then wait for transport and do all my shopping for the next three weeks before the clock ticks and the transport timeframe ends... then wait for a pick-up - could be an hour *lucky this was really short - but it takes 24 hours to recover from all the stress! I did have a good session and good shopping and finally recovered Smile  but it is already SUNDAY!!! Ugh!!! 

Mark99, thanks for the care and great response. Yes. I have kept everything open. I was amazed that the n.home actually allowed me to record our first phone conversation. I dont think he knew what was about to hit him. Due to my treatment/issues I also have a lot of long term memory issues so I take a lot of notes, keep medical records and have made friends with the folk down at the hospital records room! I have a phone call record - everything I can think of to make my life easier... I have fired two docs this past year myself which is not easy in this small town. I take my health very serious. 

I really appreciate all you have written. I is a great foundation to build on. Thanks. I will try to write more when I can come back to it, hopefully Monday. 

JennJilks, thanks so much for the great insite! Just what I was looking for... but I think I have already decided NOT to go with the feeding tube. I do believe they wanted to go with the one that would go directly thru to the stomach.

I will try to post to the Ask a Professional about the IVs and see what I can find out... but I think I have already decided to just leave that as it is and keep that going for mom.

It seems that I have a lot to catch up on all these wonderful postings. and I hope everyone understands... I pretty much have to decide to do one thing or another and making choices for which one is very difficult at times. Obviously this with mom is at the top of my mind and this forum is there as well. When I get a notice that a new post has been made I rush over to read the post and digest it all. I really value the generosity and warmth that comes thru so much.

What a precious golden light I have found, thanks again,
frank 
 
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