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swallowing(5)
PriuskaV
Posted: Thursday, December 28, 2017 9:13 PM
Joined: 12/28/2017
Posts: 1


My mother is in the last stage of Alzheimers (actually Primary Progressive Aphasia) and tonight her nursing home said she should start pureed foods.  She cannot swallow regular liquids and she has great difficulty eating.   How long can someone live like this?  Do patients lose the ability to even swallow pureed food?  

 


grammyteacher
Posted: Thursday, December 28, 2017 9:27 PM
Joined: 1/11/2016
Posts: 548


Unfortunately they do lose the ability to swallow at all. I am so sorry you are at this point. My mom is close behind yours. She has some swallowing issues too.
TessC
Posted: Friday, December 29, 2017 12:16 AM
Joined: 4/1/2014
Posts: 4556


Each person declines at different rates. My mother has been on pureed foods for a year and has had difficulty swallowing for 3 years! She has lost about 30 pounds in that time, 10 of that in the last 2 months and is now 90 pounds. Eating puree food is not a death toll, but it does signal another decline in abilities. Best to you and your dear mother.

Marty Cares 79
Posted: Friday, December 29, 2017 5:32 AM
Joined: 11/1/2017
Posts: 97


My hubby had extensive cancer surgery on the side of his face 4 yrs. ago

10 1/2 hrs, and lost and ear and damage to face and mouth area.Well, anyhow everything I have  prepared for him since then has had to be very soft foods and with a sauce or gravy to help them go down.He also must drink thru a straw and they prefer liquids be heavier so as not to choke

Ensure works for this or put some ice cream in milk etc, to thicken it.Yes I am aware you can purchase powder to thicken but he did not care for it


momwelch
Posted: Friday, December 29, 2017 6:50 AM
Joined: 11/13/2015
Posts: 6


I am so confused. I have been told by hospitalist doctor that my dear Mother is in last stages of Alzheimer's and he strongly suggested I make her  DNR and to obtain Hospice care for her.  Her most recent hospital stay was due to sudden onset of seizures and she required intubation and was on a ventilator for a while. She could not speak clearly and had great difficulty swallowing she had PEG tube inserted. My Mom is a true fighter. She is now back in nursing home, is alert and oriented X 3. She is very weak and can only transfer to wheelchair with max assistance and can not tolerate sitting up  for very long maybe an hour. She continues to have  PEG feeding tube and receives 60 cc feedings 24 hrs per day at times she becomes nauseated and feels so full from feedings states it feels as though it is up to her neck.

My confusion is that if she is in the last stages of this horrible disease should she be more confused, be unable to speak and so forth? At times I wonder if I did the right thing agreeing to put her through having the PEG put in? 

I am 62 yrs old and in poor health and would love to bring her home because I know she would love to be home again. I just do not know what to do at this point. My options are to stop tube feedings, provide her food orally of anything she  wants, bring her home with Hospice? I am so torn of what to do.

Thanks in advance for any insight and suggestions.


Michael Ellenbogen
Posted: Friday, December 29, 2017 7:01 AM
Joined: 11/30/2011
Posts: 2105


 The question you should be asking is what will she gain by using a PEG feeding tube. Would you want one of those? 


JJAz
Posted: Friday, December 29, 2017 12:09 PM
Joined: 10/21/2016
Posts: 2096


momwelch wrote:

 She is very weak and can only transfer to wheelchair with max assistance


I am 62 yrs old and in poor health and would love to bring her home because I know she would love to be home again.

If Mom needs max assistance for transfers, and you are in poor health, it would be a very bad idea to bring her home.  Instead, call Hospice to consult with you while she is in the nursing home.  They will help you decide what to do.

VKB
Posted: Friday, December 29, 2017 2:13 PM
Joined: 12/4/2011
Posts: 3370


Michael Ellenbogen wrote:

what will she gain by using a PEG feeding tube. Would you want one of those? 

Yes, this is something that must be researched and decided on way before the need.  Doctors will offer this, so you will need to know the pros and cons and your own thoughts and feelings about it.  I had to make a quick decision that I was not ready for, so now you have a chance to ask the question Michael is asking you.  Peace always Veronica

momwelch
Posted: Friday, December 29, 2017 6:08 PM
Joined: 11/13/2015
Posts: 6


No I would not want a PEG tube. My Mom has always said she wants everything done to "live" including CPR and everything that goes with it. During last hospitalization Mom could not swallow at all or speak clearly after having that major seizure and being intubated they first put in NG tube and she pulled through all of this and then she agreed to have PEG tube placed.  She is holding on to the hope that she will "get well" get stronger and be able to come home with the ability to use a walker. I guess part of me has this same hope. She can now speak clearly and is eating by mouth some but appetite is very poor. Thanks for everyone's input. I know logically I will not be able to bring her back home but my heart wants to.
Pam14
Posted: Friday, December 29, 2017 11:47 PM
Joined: 5/30/2014
Posts: 551


My sister had been on a PEG tube and was on a feeding tube for 10 years as of May 15 & passed away on May 19 this year.  I know WAY too much about feeding tubes, in general, including PEG tubes.  Do NOT bring her home with you with a PEG tube.  You cannot even imagine all the things that can go wrong with a feeding tube; and unless you are medically trained as a nurse, you're not in a position to care for that tube.  SO many things can and do go wrong with them.  You mentioned she felt like she was full up to her throat.  Whatever facility your mother is at should be doing certain things prior to feedings.  #1 they should be checking to see if she has residual in her stomach and not just assume because she is on 60cc feedings, there is no residual there.  If there is a certain amount of residual (to be determine by her doctor, the feeding should be held.  The more the body starts to slow down, the less nutrition is needed.  They also should be checking her Albumin level regularly to see how well her body is absorbing the nutrition.  Going down on a feeding tube is about the hardest thing in the world.  It will NOT allow your mom to go down naturally.  Nursing home nurses seem to take pride in how much nutrition they can get into their residents.  As well, they all have dieticians whose duty is to make sure that they do NOT lose weight, even on a PEG tube.  Having a PEG tube - or any type of feeding tube - sets your mom up for aspiration pneumonia and tube site infections.  These are two very painful and bad infections to have.  Do you really want to put your mom through all that?  I watched my sister suffer too much to even consider putting a loved one on a feeding tube - unless the doctor could guarantee me it was temporary.  Once they're in, it's usually not that easy to get them removed or stop using it.  My sister's doctor required that all immediate family members be in agreement before he would stop use of the tube.  If I can answer any more questions about this, please feel free to message me.  Many prayers are with you.

 


momwelch
Posted: Saturday, December 30, 2017 8:50 AM
Joined: 11/13/2015
Posts: 6


Thank you Pam14 for explaining all of this. I am sorry for your loss of your sister

I really wish we had not done the PEG tube, but we are already there,

The nursing home staff does check for residual several times a day, Oddly she never has residual but at times feels so full and has a lot of nausea. The staff turns off feeding for an hour or so when she feels like this.

This morning she could not eat breakfast due to nausea. Her swallowing is pretty much back to her normal but has no appetite. 

I mentioned to her she did not HAVE to continue to use tube if she wanted to have it stopped, she does not so that is where we are......................I so wish I had not agree to the PEG tube, I wish I could have met you before this decision was made.


Pam14
Posted: Saturday, December 30, 2017 9:33 PM
Joined: 5/30/2014
Posts: 551


momwelch -

My heart aches for the position you are in right now.  Talk to her doctor - NOT the hospitalist - about her health, in general, and about the nausea.  It's hard to tell what's causing the nausea right now.  It could be the "artificial nutrition" brand they are giving her is not agreeing with her.  It could also be from a med &/or a combination of the two.  Her primary care "contracts out" that hospitalist for when she is hospitalized, so talking to a doctor who knows your mom is your best bet.  I reread what you wrote & it's confusing to me as to if your mom is still her own advocate or if you have POA for her.  

As far as her being "end stage" & still having some clarity of mind, that is possible with this horrid disease.  Her body "might" be shutting down.  That's why I recommend talking to a doctor who knows her.  I now understand, though, why she's only getting 60cc feedings.  Since you said they brought her breakfast & she can now swallow, the PEG tube is there to only supplement her nutrition.  Wow.  That was a pretty drastic measure to take to supplement her nutrition.  My sister was on 55cc feedings for a long time - but that was her main source of intake as she had a lot of esophageal problems & couldn't swallow very well & never would be able to do so.  The complications from her feeding tube, along with the low amount of nutrition she was taking in, is really what took her.  She became protein deficient from the length of time on a feeding tube & her lack of ability to absorb nutrition, & her muscles & tendons started breaking down.  After that, she started into organ failure - all from protein deficiency.  She also had Down Syndrome.  The last year or so there were days she knew my name & some days she didn't, but she always knew I was someone she loved & trusted.  When she passed, her doctor put on the death certificate "Alzheimer's Disease."  Her doctor told me not everyone gets to the stage of being a complete vegetable, where they don't know anyone, when this horrid disease takes them.  

I'm also so sorry to hear of your own health problems.  I've been in the same boat & was becoming quite fearful my sister would outlive me & then who would take care of her.

Praying for you.  Please stay in touch & let us know how your mom & you are doing.


Angel_Wolf
Posted: Saturday, December 30, 2017 10:14 PM
Joined: 7/8/2017
Posts: 143


Wow, preview of ....  my LO is early-mid-stage mixed dementia and had physical therapy two years ago for the swallowing problems.  LO's weight is dropping and it is difficult to coax LO to eat.  Doh!  Somehow I thought is was more a depression 'thing' (De Nile is not just a river in Egypt).
I am so grateful that you all have shared your experiences -- it helps me so much to have this 'long view' of the iceberg that is floating ever so close to my fragile little craft! 
"Fore-warned is fore-armed."  Now, excuse me, I'm going to go scream into a pillow....
momwelch
Posted: Tuesday, January 2, 2018 4:40 PM
Joined: 11/13/2015
Posts: 6


Pam14

 

Thank you for your honesty regarding expected outcome of this terrible disease. It is truly a horrid disease. You asked about if I was Mom's POA sorry for the confusion. Yes I am her POA but since she is so clear minded we still talk and discuss things and my desire is to honor her wishes.

Mom is in a nursing home "for rehab" now and her primary doctor is one on staff at the nursing home and he really does not "know" her. Prior to being in nursing home Mom was in hospital and prior to that hospitalization she was being seen at home by nurse practitioner from a doctor's office that did home visits. She has not seen Mom in a long time.

You mentioned about the PEG tube feeding being a drastic way to supplement her nutrition. This is not why she initially received the PEG tube. Remember she started having seizures was taken to ER they gave her a strong dose of IV Ativan.....her breathing was compromised and was put on ventilator. After all of this she could not swallow and NG tube was inserted.......no nursing home will accept a patient with NG tube and after being in hospital post MICU she could still not swallow and it was agreed to place PEG tube. She has been receiving speech therapy and now she can swallow certain foods but has no appetite. Also right now she has an upper respiratory infection that seems to be going around the nursing home....has horrible deep cough. Generally ill feeling.

Thank you for taking the time to email me. I appreciate your prayers so much....will stay in contact. I consider you a friend and sister in Christ. May God continue to bless you and your family.


Daddysgirl69
Posted: Tuesday, January 8, 2019 7:51 AM
Joined: 12/3/2017
Posts: 1


Hi -

My 87 yo father is moderate stage alz but had a stroke last year leaving him corticlly blind, and subsequent hospitalizations which resulted in muscle atrophy.  He is total assist.  I take care of him at home.  He was on Puree/ honey thick liquids,

He has now been in icu for 2 weeks (came in December 24 with septic shock, asp pneumonia and uti), and on ventilator for about 12 days.  He was extubated but after being given an opioid, went into respiratory depression and was reintubated.

We now must decide before they extubate again whether we want a trach if extubation fails.  

In addition, even if extubation succeeds, I do not know how long it will take/ if his swallow will return.  If he were end stage alz we would move to comfort measures and not do a PEG as he can still aspirate from reflux, etc.  but since he still had a good swallow and was not end stage before is latest illness, I am not sure.

My dad has a strong will to live and I want to honor that.  He actually took care of my mother, at home (a NY apartment) for 9 years (until her death) while she was total assist and fed through a PEG.  Mom had MS and aspiration pneumonia and got a PEG subsequent to that. 

I do not want to put him through unnecessary hardship.  It sounds from your experience like your mom regained her swallow after being on enteral nutrition after extubation.  Thoughts?

Thank you for sharing your experiences,  Specifically if swallow has returned after extubation in elderly dementia patient.


Jane Smith
Posted: Tuesday, January 8, 2019 8:59 AM
Joined: 3/23/2015
Posts: 7


Hello, Daddysgirl69.  I will leave it to the moderators here as to whether you should start a new topic with your post.

 

I am sorry to hear about your father's hospital stay and the difficult decisions you are facing.

 

The best I can suggest is a long, frank, sit-down, in person talk with the attending ICU/critical care physicians to get a better picture of what the likely outcomes are, which might help you to make decisions.

 

I can also recommend two books.  One is Hard Choices for Loving People by Hank Dunn, and the other is Being Mortal by Atul Gawande.

 

It is not easy to make important medical choices on behalf on another person.  Wishing you and your family all the best.


dayn2nite2
Posted: Tuesday, January 8, 2019 10:07 AM
Joined: 6/20/2016
Posts: 1693


Daddysgirl69 wrote:

Hi -

We now must decide before they extubate again whether we want a trach if extubation fails.  

In addition, even if extubation succeeds, I do not know how long it will take/ if his swallow will return.  If he were end stage alz we would move to comfort measures and not do a PEG as he can still aspirate from reflux, etc.  but since he still had a good swallow and was not end stage before is latest illness, I am not sure.

My dad has a strong will to live and I want to honor that.  

Honoring your father's "will to live" would be to allow him to live or not under his own power - not with the aid of a ventilator, trach, or PEG tube.

To continue the life of the body with these measures is just that - continuing the life of a body.  The mind is gone.  Is that what he would want?

Please do get "Hard Choices for Loving People."  I think after you read that your path will be very clear.

 
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