It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Alzheimer's Disease & Dementia Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 06-04-2012, 10:56 AM   #16
Veteran
(female)
 
Join Date: Jul 2008
Location: Washington state
Posts: 467
TC08 HB UserTC08 HB UserTC08 HB UserTC08 HB UserTC08 HB UserTC08 HB UserTC08 HB UserTC08 HB UserTC08 HB UserTC08 HB User
Re: Discouraged, disheartened, dispirited...

Hi All -

Sounds like your mom has rallied and is doing better. Forgive us if we seem to talk about the dying process when you're not ready to go there. I COMPLETELY understand wanting them to be here as long as they can be. It does get complicated because of what medical intervention **can** do, but......trying to decide what it best for our loved one is a deeply personal decision.

I can only speak for myself, but when my stepdad was really failing at the end, and we put him on hospice, we knew the limitations of hospice. He most likely had pneumonia and was aspirating food / fluid into his lungs. I have absolutely no doubt that he had another stroke which compromised his ability to swallow. I am a thyroid cancer survivor (4 years now) and because of the extent of my cancer, my right laryngeal nerve had to be "sacrificed" as they call it, because it was encased in cancer. After the surgery I was aspirating fluid into my lungs!!?? If I had not been younger and stronger (early 40s at the time) the medical intervention they would have had to do would have been, well, pretty awful (I came very close to having a tracheotomy, etc). I will live with a paralyzed vocal cord the rest of my life. I have had to work very hard at rehab to re-train my body / brain on how to swallow, breath, and speak.

With my stepdad, we knew that if we put him through another ER visit, hospital stay, yes, they might have been able to clear up the pneumonia, but it would continue to happen again, and again, and again. He had a living will so we were very clear about what his wishes were. But I will tell you - that day when the hospice nurse told us he could no longer swallow (they had been giving him oral antibiotics), and therefore couldn't eat, drink, or take the oral meds...........although I KNEW we were doing right by him......it was an incredibly gut wrenching decision. He passed away 4 days later. But I have to say - we all got to be at his bedside - he was in the adult family home where he had lived the last year and a half of his life - he was comfortable - and after having put him through several ER trips and hospitalizations, we honestly felt this was the most loving thing to do. I'm sharing all of this only to share my experience - NOT to tell you what to do. I would never come from that place with anyone. If she's doing better and you feel good about what you're doing, then you go for it! We're all here for support! I'm checking the boards now just to keep up with you

None of this is easy. It truly is a process we all go through.....and you are smack dab in the middle of it. Sending big {{{hugs}}} your way!!!!!

 
The following user gives a hug of support to TC08:
ninamarc (06-04-2012)
Sponsors Lightbulb
   
Old 06-04-2012, 11:04 AM   #17
Senior Member
(female)
 
Join Date: May 2012
Location: Kentucky
Posts: 144
all4mom HB Userall4mom HB Userall4mom HB User
Re: Discouraged, disheartened, dispirited...

At this point, I'm grateful that she has rallied to the point where she CAN come home (when she was bedridden, with uncontrollable diarrhea, and dehydrating every few days, keeping her home - EXCEPT on hospice - wasn't even almost a possibility) and CAN be happy and at peace there with her loved ones for whatever time is left; we are thankful!

Now to get scared spitless about the responsibility of caring for her there, lol...

 
Old 06-04-2012, 11:40 AM   #18
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
Re: Discouraged, disheartened, dispirited...

Quote:
Originally Posted by all4mom View Post
I was searching online for that book, "The Long Goodbye"... Would you happen to know the author's name? BTW, he stole that title from Patti Davis's book about her father -- President Ronald Reagan -- and his ordeal with Alzheimer's Disease...
His name is J. K. Also, it is in the website for Time magazine. It is in the last issue this month. It is not a book.
It is just a special article he did. I could only find the previous issue yesterday in the drug store but I guess I have to go to a bookstore for the recent copy for June 11.
If you search time magazine and the long goodbye in Time's site, you will find his video, but the article has to be bought.
I am not sure if I can say the real name here...


Nina

Last edited by ninamarc; 06-04-2012 at 11:49 AM.

 
Old 06-04-2012, 11:44 AM   #19
Senior Member
(female)
 
Join Date: May 2012
Location: Kentucky
Posts: 144
all4mom HB Userall4mom HB Userall4mom HB User
Re: Discouraged, disheartened, dispirited...

Oh, I see (an article; not a book excerpt). Okay; thanks!

 
Old 06-04-2012, 02:33 PM   #20
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
Re: Discouraged, disheartened, dispirited...

I personally think the Time Magazine article or video is about the author's personal view.
It does not solve the problem for those of us who are asking this personal question such as feeding tube and etc. For me, I know it is suffering to have tubes, but it is also about letting go of the person, and it is not really that I have no idea what it is about.
Certainly many medical professionals will give you different opinions and it is really up to the family to make the last decision. Perhaps I will get the issue this weekend.

Nina

Last edited by ninamarc; 06-04-2012 at 02:35 PM.

 
Old 06-04-2012, 04:21 PM   #21
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,135
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Discouraged, disheartened, dispirited...

It is a very personal decisions made by each family based on the wishes of the patient and the family.... and our readiness to let go. What is right for one family is not right for another. It is not an easy decision to make but each family must make the one that feels right to them. Yes, you do need to get all the information possible related to prognosis and diagnosis. We have to decide what the terminology means to us. Yes, we are all in the dying process every day but some are known to be closer to the end than others. It is debatable how each decision actually affects the final date. There are those that last only a few days without nourishment and others that last for much much longer. There are situations where a procedure is warranted, yet in another situation it is not prudent. There is not a one size fits all solution. We can only gather all the information possible and then make an informed decision based on wishes and what we know in the moment

Love, deb

 
Old 06-04-2012, 05:01 PM   #22
Veteran
(female)
 
Join Date: Oct 2003
Location: USA
Posts: 446
Beginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB User
Re: Discouraged, disheartened, dispirited...

Deb and Nina:

I agree completely. One of the nicest things about this site is that no one judges or says that there's only one way of being a caregiver. We are each trying to do our best in our own family's unique circumstances, based upon medical information, belief systems, instructions such as living wills or health care directives, the patient's status and quality of life, etc. etc. etc. When someone falters or needs support, they've been able to find it here.

Every caregiver is discouraged, disheartened and dispirited at times. It really doesn't matter whether someone is trying to extend a loved one's time, or whether someone is dealing with end-of-life issues. Someone here will try to be helpful, no matter what choices are being made by the caregiver for their unique circumstances. Considering how bizarre many internet boards are, it's been a joy to see how thoughtful, helpful and nonjudgmental the people on this forum have been over the years.

 
The following user gives a hug of support to Beginning:
Gabriel (06-04-2012)
The Following User Says Thank You to Beginning For This Useful Post:
TC08 (06-04-2012)
Old 06-04-2012, 06:55 PM   #23
Veteran
(female)
 
jagsmu's Avatar
 
Join Date: May 2008
Location: BC, Canada
Posts: 387
jagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB User
Re: Discouraged, disheartened, dispirited...

I am so glad to hear that your mom is "feeling" better, The nosie and confusion of where she is will be a big part of what is troubling her, I use to take my mom out of her room in a wheel chair and find a quite part of the hospital where we could just sit and enjoy the silence. is there somewhere you can wheel your mom for the peace and quite. Wednesday will be here soon enough, you will do fine, as with all of us, there is no choice but to move forward with what we have to do... It is good to read that your moms medical problems seem to be stablizing, as I use to do, one thing down a hundred to go... big hugs to you

hugs judy...
__________________
Forever in my heart

 
Old 06-05-2012, 08:50 AM   #24
Senior Member
(female)
 
Join Date: May 2012
Location: Kentucky
Posts: 144
all4mom HB Userall4mom HB Userall4mom HB User
Re: Discouraged, disheartened, dispirited...

The "suffering" from tubes is greatly exaggerated, at least in my experience. The old nasogastric tube was certainly uncomfortable (and unsightly), but my mother's PEG tube doesn't bother HER unless someone bothers IT... Unfortunately, it enters right at the waistline, and rehab aides have a nasty habit of hoisting patients up by their waistbands and then tugging down the pants aggressively to "potty"; I have to be on-hand and warn them each time. A physical therapist even tried to put a GAIT BELT right over it and haul her up by THAT. Ordinarily, though, it causes her no "suffering" and keeps her alive.

 
Old 06-05-2012, 09:29 AM   #25
Senior Veteran
(female)
 
ninamarc's Avatar
 
Join Date: Mar 2011
Location: Canada/USA
Posts: 1,703
ninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB Userninamarc HB User
Re: Discouraged, disheartened, dispirited...

For sure the tube in the nose is very bad. I had one for a week when I had bowel issue and went to the hospital. In the end, my throat was badly irritated and I felt so good when the doctor took it off. This kind of tube can be pulled off by the patient.
Sorry that your Mom has this situation around the waistband. There are always some problems when one is hooked up.
It is up to the family for sure. My FIL pulled out all kind of tubes: catheter, IV, nose pad for bleeding and etc. For sure he would pull out the feeding tube. Later on he got used to the catheter but whenever the tubing was handled, he hated it.

Nina

 
Old 06-05-2012, 02:19 PM   #26
Registered User
(female)
 
Join Date: Dec 2011
Location: Bedminster, NJ
Posts: 142
Suzy0513 HB UserSuzy0513 HB UserSuzy0513 HB UserSuzy0513 HB UserSuzy0513 HB UserSuzy0513 HB User
Re: Discouraged, disheartened, dispirited...

I agree with this fully.

It is very hard to have these kinds of responsibilities and additional decision making that we are faced with when dementia of any kind enters the picture!

And every situation is completely unique because every person is unique!

It sounds like maybe your Mom was doing a little better and I hope so...


Quote:
Originally Posted by Beginning View Post
Deb and Nina:

I agree completely. One of the nicest things about this site is that no one judges or says that there's only one way of being a caregiver. We are each trying to do our best in our own family's unique circumstances, based upon medical information, belief systems, instructions such as living wills or health care directives, the patient's status and quality of life, etc. etc. etc. When someone falters or needs support, they've been able to find it here.

Every caregiver is discouraged, disheartened and dispirited at times. It really doesn't matter whether someone is trying to extend a loved one's time, or whether someone is dealing with end-of-life issues. Someone here will try to be helpful, no matter what choices are being made by the caregiver for their unique circumstances. Considering how bizarre many internet boards are, it's been a joy to see how thoughtful, helpful and nonjudgmental the people on this forum have been over the years.

 
Old 06-05-2012, 02:21 PM   #27
Registered User
(female)
 
Join Date: Dec 2011
Location: Bedminster, NJ
Posts: 142
Suzy0513 HB UserSuzy0513 HB UserSuzy0513 HB UserSuzy0513 HB UserSuzy0513 HB UserSuzy0513 HB User
Re: Discouraged, disheartened, dispirited...

I am glad that it looks like she is well enough to come home...

I know it will take a lot of planning on your part but I hope that it goes well for you if you do move her back home and I hope the different environment helps your Mom!

Quote:
Originally Posted by all4mom View Post
At this point, I'm grateful that she has rallied to the point where she CAN come home (when she was bedridden, with uncontrollable diarrhea, and dehydrating every few days, keeping her home - EXCEPT on hospice - wasn't even almost a possibility) and CAN be happy and at peace there with her loved ones for whatever time is left; we are thankful!

Now to get scared spitless about the responsibility of caring for her there, lol...

 
Old 06-07-2012, 08:45 AM   #28
Senior Member
(female)
 
Join Date: May 2012
Location: Kentucky
Posts: 144
all4mom HB Userall4mom HB Userall4mom HB User
Re: Discouraged, disheartened, dispirited...

Oh, and... I do take her outside or at least into the quieter lobby if inclement weather almost the entire time I'm there... The noise bothers me, too! For the latest UPDATE on my Mom, see the thread I'm going to post entitled, "The Latest Wrinkle"... Thanks!

 
Old 06-26-2012, 05:51 PM   #29
Junior Member
(female)
 
Join Date: Dec 2006
Posts: 36
hillside6 HB User
Re: Discouraged, disheartened, dispirited...

I SOOOO know what you are going through. Easter weekend our moms potassium went high. She is in a nursinh home. She is a heavy lady (passed down to us)
Her dr was out on vaca so nh dr took over giving her medication to combat high potassium but with no lab work until monday to monitor the levels my daughter the nurse ask for the dr to give orders for daily blood draws when he refused she ask that she be placed in the hospital which they would do.
in the hspital daily monitor could take place. My sister didn't want her to go, even through she knew that the medication not monitored would possible kill her. If that was the end so be it. My Mother was just sick. She came through and now is back at the nursing home. She.s not walking , had to get speical chair and bed because of her size is now scared to get up or be moved, to the point of tears.

She doesn't know us , loves when she has attention, can say her prayers
is eating , has loss all control of her bowels and urine.

Did I do the right thing? I can't change it. Will I do the same thing next time?
I love her so much. I will miss her so much. This thing is so hard for everyone
one day at a time

 
The following user gives a hug of support to hillside6:
all4mom (06-27-2012)
Closed Thread




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added




Top 10 Drugs Discussed on this Board.
(Go to DrugTalk.com for complete list)
Aricept
Aspirin
Ativan
Morphine
Namenda
  Reminyl
Risperdal Seroquel
Xanax
Zoloft




TOP THANKED CONTRIBUTORS



Gabriel (757), ninamarc (157), Martha H (124), meg1230 (93), angel_bear (68), jagsmu (55), Beginning (51), TC08 (44), ibake&pray (43), debbie g (37)

Site Wide Totals

teteri66 (1166), MSJayhawk (1000), Apollo123 (898), Titchou (833), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (668), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 01:41 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!