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Old 04-14-2007, 08:01 PM   #1
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Unhappy My Daddy has AD (5+ years) now aspiration (unable to swallow)

My Daddy, was diag. with AD in July, 5 years ago. He has went through each stage, 1 by 1 over the past 5 years and its been a very difficult and sad road for me.

Daddy also has COPD and a few days ago I was told that each time he eats, he is aspirating. He is on Hospice (in a Nursing Facility) and at that stage where, --as Hospice told me: "he has forgotten how to swallow"

I knew this could (would) happen. I've read about AD and have friends who have loved ones that have passed away from aspiration pneumonia. Its so sad, no matter how much you tell yourself "ok, I'm ready for this"...its not true. Its is so difficult knowing that this is the final stages.

I'd like to hear from others that have loved ones with AD and fears of aspiration pneumonia. Fears meaning...I don't have a clue what to expect... how long? is he or will he be in pain? He is still being fed "comfort foods" right now...with me knowing the "risk of feeding", but I agreed to it because I could not stand the thought of him starving, or laying there thristy.

Any thoughts you have are greatly appreciated. God Bless!

--Cyn

Last edited by CynAnn; 04-14-2007 at 08:04 PM.

 
Old 04-15-2007, 05:02 AM   #2
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Re: My Daddy has AD (5+ years) now aspiration (unable to swallow)

Dear CynAnn,

I am sorry to hear of your father's condition.

My Mom is in the final stages of dementia. For the last year or more she has been losing her swallowing reflex, and the NH only allows her pureed foods and thickened liquids to avoid aspiration, but we know it could happen at any time.

It is the hardest thing to watch your loved one deteriorate like this. I hope that Hospice care will make your Dad's transition easier on the whole family, they are known to be the absolute best for final stage care.

You will be in my prayers.

Love,

Martha

 
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Old 04-15-2007, 07:00 AM   #3
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Re: My Daddy has AD (5+ years) now aspiration (unable to swallow)

My FIL has been doing something strange for the past several weeks and I am wondering if it has something to do with the swallow reflex. Although, the nursing home staff report that he eats well, he seems to hold food in his mouth for several minutes. The last few times we have visited he has eaten a cookie before we got there. While we visit with him he continues chewing or "gumming" the cookie. We are talking about several minutes or even an hour or more.

Is this normal? Should we tell him to swallow whatever is in his mouth?

I am sorry you are going through this, CynAnn, I have a feeling we will face this with my FIL one of these days.

Jane

 
Old 04-15-2007, 10:23 AM   #4
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Re: My Daddy has AD (5+ years) now aspiration (unable to swallow)

Cyn...you're correct in knowing this is another sad part of Alzheimer's. We have to remind Mom to swallow also...the body's natural response of swallowing is just gone. I remember taking Mom to the Dr. once, and on the way home, she wanted a drink from my water bottle. After a nice drink, she just sat there with swollen cheeks not knowing exactly what to do! I stopped the car and went around to coach her...this was the first time "it" happened, but is now a daily occurance. When we were told it was time for her food to be pureed, I prayed all the way home for God to just take her........then I realized how selfish I had become! Was I praying for HER release...or for MINE?? Now my prayer is to bring peace to her...I think I have much more to learn.

Jane...he probably needs a reminder...but I think they are so stimulated by texture, color, and sound...and holding food in their mouths may be also attached to some form of comfort stimulation.......p

 
Old 04-15-2007, 12:40 PM   #5
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Re: My Daddy has AD (5+ years) now aspiration (unable to swallow)

My husband was diagnosed with AD 5 years ago this past February. He is having problems with food but not just like you describe, yet. He will put food in his mouth (usually meat) even though it is cut up very fine and he will spit it out and either say it is like cement or rubber or some other descriptive word. We are eating the same meat and you can cut it with a fork. I can't figure this out. He has no problem with salad, potatoes or vegetables but seems to prefer softer food. Is this the beginning of another problem???? He loves oatmeal and ice cream and will eat tons of that. Another thing that we have noticed, his hands shake a lot lately. When he eats it seems to be very difficult for him to get the food up to his mouth. I keep wondering if he has something else going on that we don't know about yet.

Jan

 
Old 04-15-2007, 02:33 PM   #6
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Re: My Daddy has AD (5+ years) now aspiration (unable to swallow)

An old friend of mine told me this when the question of swallowing came up:

"about final stages, aspiration pneumonia:
"In the FINAL FINAL stages, when they are refusing food, they
are not hungry ... the body releases endorphins instead of pain ... and food becomes painful for them …
"God’s honest truth. Pain levels have been measured on a ‘starving dying client’ and where you and I would be begging for an oreo, when the client is given the food the pain levels increase which equals more morphine,
which just prolongs everything ….
"When the body has had enough, we need to listen to it and stop acting on its behalf."

Hope this helps..
Martha

 
Old 04-16-2007, 07:15 AM   #7
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Re: My Daddy has AD (5+ years) now aspiration (unable to swallow)

You all are so wonderful! theres a peace knowing that I am not alone and others have experienced this as well.

Like so many others, Daddy has followed the 7 steps of AD like it was a play and he was an actor, acting out each stage of AD one by one.....

Prior to the aspiration, he was first, eating a normal diet and enjoying his food, later, he would eat and would hold the food in his mouth (especially any kind of meat)

then...we placed him on pureed foods, he done really well for almost a year until this past week or so as he has forgotten how to swallow at all and even pudding seems to be hard for him.

I assisted in feeding him yesterday, small soft food and thickened liquids, but he seemed to struggle...it was so sad. I wondered is he wanting to eat this or is it hindering him more than helping him?

I have a meeting with his Doctor and Hopsice nurse today at 1pm....Thanks again for your replies, its so nice having friends to talk to that have experienced this terrible pain of ssslowly loosing a loved one.

--Cyn

 
Old 04-16-2007, 08:32 AM   #8
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Re: My Daddy has AD (5+ years) now aspiration (unable to swallow)

Quote:
Originally Posted by Martha H View Post
An old friend of mine told me this when the question of swallowing came up:

"about final stages, aspiration pneumonia:
"In the FINAL FINAL stages, when they are refusing food, they
are not hungry ... the body releases endorphins instead of pain ... and food becomes painful for them …
"God’s honest truth. Pain levels have been measured on a ‘starving dying client’ and where you and I would be begging for an oreo, when the client is given the food the pain levels increase which equals more morphine,
which just prolongs everything ….
"When the body has had enough, we need to listen to it and stop acting on its behalf."

Hope this helps..
Martha

Hi Martha,
A caregiver tried to explain this to me in her words, but I just didnt get it until I read it, the way you have it posted....its easy to fully understand. Thank you so much for posting this!

 
Old 04-23-2007, 08:23 AM   #9
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Re: My Daddy has AD (5+ years) now aspiration (unable to swallow)

My dad died on 3-30-07 which was about 6 days after I made the very difficult decision not to tube-feed him. He was diagnosed 4 yrs ago with early-stage Alzheimer's Disease, and it has been a long and very hard road. We walked through each step of progression together, but by far the most agonizing was the loss of his ability to swallow. He almost choked to death several times and finally we had to suction out food every time he ate or drank anything. He had aspiration pneumonia for the last 4-6 weeks he was alive. We kept it under control with strong antibiotics, but it was all to no avail.

I took dad to a nursing home (5 min from my house) on 11-22-06, and I was there every day and night. I saw what was happening to him and I fought for his life every single day. Inability to swallow started with him pocketing food in his mouth and/or spitting it out. He just didn't know what to do with it. Over the course of weeks, he started choking a little, then a lot, then choked on every bite of pureed food or thickened liquids. I did everything I could to get food INTO him.

Finally, I had to say "it's time to stop putting anything in his mouth, including liquids" knowing what that meant. The food just wouldn't go down any more. Even if the food went down into his esophagus, the physical mechanism didn't work any longer and the food piled up until he sucked it into his lungs. Choking has always been something that just sends me into outer space! I could not stand to see him choke, turning red and then almost black in the face.

The nurses loved my dad and it was like having private-duty nurses with him even though he was on Medicaid and in a semi-private room. This is a tiny town where everyone knows you and they take care of your parents as though they were their own. So, they knew all along that it was time to stop feeding, but I kept hoping that he would "get over it". IF we could just get him over pneumonia, and IF he could just swallow a little it would be better than nothing. IF he could just stop coughing then maybe he could swallow better. IF, IF, IF . . .

In my opinion, now that I am on the other side of it, it is cruel to continue trying to feed them when their swallowing mechanism does not work any more. The only "comfort foods" they were giving him were foods to comfort ME, but those foods were causing him tremendous pain and fear when he choked. Now I believe that I was being selfish to make them continue trying to feed him, but each of us has to work through this in our own way and time. My only regret is that we did not stop feeding sooner. My dad trustingly took every bite or sip we gave him even though he could not possibly swallow and then he choked horribly.

Once the decision was made to stop giving him anything by mouth, it took 6 days for him to die. I was there every minute and saw him take his last breath. For the entire 6 days I prayed that God would be merciful and take him, but I can assure you that he did not suffer. He did not feel hungry or thirsty as far as I could tell. We swabbed out his mouth and washed his teeth with Q-tip type things and kept his lips moistened just in case he felt anything, but I am convinced that he did not know. 99% of the pain was mine, not his. He was kept very comfortable with hospice-like care from the nursing staff. The decision to let him die naturally was the most loving thing to do even though it nearly killed me at the time after having fought to keep him alive and well for so long. I cared for him at home full-time until he went to the nursing home, and even then it was as though I was part of their nursing staff because I "lived" there with him.

When their body is ready to die, doing anything to prevent it only prolongs dying and causes them pain; it does not prolong life and certainly it does not offer them any quality of life. However, each family has to make their own decision when to stop feeding. For me it was the most agonizing decision I have ever made in my life, but I am absolutely sure it was the right decision. I can say that even while I am still grieving the loss of my dad who was always my hero.

It is in memory of my dad that I have offered these personal insights. God bless you as you work through this, and I hope that something I have said might help you in your journey.

Kind regards,
Marsha

 
Old 04-23-2007, 11:15 AM   #10
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Re: My Daddy has AD (5+ years) now aspiration (unable to swallow)

Dear Marsha, thank you for sharing this important experience. My family and I are on the threshhold of making that decision ... your experience reinforces my wish to just stop feeding and let it happen ... I know it must have been miserably hard.

Love,

Martha

 
Old 04-23-2007, 11:47 AM   #11
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Re: My Daddy has AD (5+ years) now aspiration (unable to swallow)

Martha, many of your words and experiences have helped me immeasurably over the last year so I am glad I can say something now to help you. I remember getting up in the middle of the night just at my wits end and coming to this board to read about everyone else's experience, and I especially recall reading so many of your comments. Even though I didn't have the energy to respond, it made a huge difference to me. Thanks to you and to all on this board who share their hearts and lives with others in need (like me).

I would have breathed my last breath into dad IF it would have helped him. That is how much I loved him. But ultimately the most loving thing I could do was to make the decision to allow the dying process to move along naturally and be absolutely certain that he was receiving everything necessary to make him comfortable during that last week.

I know that I did the best I could, but every now and then that old devil called "guilt" (second guessing) rears its ugly head. My head and my heart do not always agree, even after it is all over. As I counsel with myself each and every day, though, I am absolutely sure that I made the right decision for HIM, and as the days pass, I know it was the right decision for me and my mother who lives with me (mother is quite ill & I am taking care of her, too). I know you will make the right decision for your loved one, too.

God bless and I am sending you hugs because it is a tough decision and it hurts even when it is the right one.

Much love and gratitude to you and others for your faithfulness on this board. I would have never made it without you. You make a difference even for people who do not write comments or respond in any way. You never know who is reading and searching desperately for answers during the dark of the night when everything seems so endless and hopeless. I'm glad if I have helped in any way.

Marsha

 
Old 04-23-2007, 06:35 PM   #12
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Re: My Daddy has AD (5+ years) now aspiration (unable to swallow)

Dear Marsha,
I read your post with tear filled eyes, it was like I had wrote the emotions about my Dad. Thank you so much for sharing. God Bless you. --Cyn

 
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