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Old 01-19-2011, 03:59 PM   #1
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Puzzling rapid decline

Thank you for this opportunity for group support. My father is 94 years old and has had dementia for 5 years. I considered his dementia to be very manageable in that he knows who we all are and where he is. At night he gets sundowning and his only physical problem is incontinence. He has been in a nursing home since August. He was fine and thriving there having convinced himself that he was the boss of the floor and the staff reported to him. The staff loved him and we were very happy with his care. On Thanksgiving while I was with him he started to choke (not while eating). By Sunday he was taken to the ER in complete respiratory failure diagnosed with aspiration pneumonia. He fought back from that but was unable to swallow. This decline seems so very quick. We were very ignorant as to all of this and agreed to a feeding tube. However, the tube was not placed for a week (waiting for medical clearance) and my dad only received intravenous nourishment. Any attempts to feed him resulted in his choking. The day before the tube was placed he told me he was promised a big banquet by my brother and he was awaiting that. He was alert and laughing and conversing with us. After the tube was placed all he did was sleep. He was released back to the nursing home and continued to only sleep. We were told by the doctor at the nursing home that blood tests revealed that he was not accepting the nourishment via the feeding tube. He has been in this situation since mid December. When I visit he is mostly sleeping and when awake will respond to questioning and recognizes us. He seems restless and moving around in his sleep and he has tremors. When asked if he is in pain he says no. I cannot believe that he is surving still. Does anyone have any experience with what can we expect from here? Is there anything that we can/should be doing to help him in any way? All I do when I go there is just look at him sleep. The helplessness I feel is overwhelming. Thank you community.

 
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Old 01-19-2011, 06:14 PM   #2
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Re: Puzzling rapid decline

Bless you Blackiesgirl... I know how difficult this is. First, I am surprised that eh came back from Aspiration Pneumonia. That is so difficult for an elderly patient to come back from. Evidently he was having difficulty swallowing before the pneumonia and aspirated food particles into his lung. That is the way you get Aspiration Pneumonia.

It is not unusual for a loved one to take a sharp decline after a medical crisis. Mom lost her speech and auditory processing after a hospital stay for hysteria. Dad declined dramatically after a hospital stay for a very minor brain bleed. It is a phenomenon that just happens.

Obviously the feeding tube is not benefiting him. The fact that he is not processing the nutrients that he is receiving backs that up. Is the feeding tube still in place? Have you considered requesting that it be removed? Is it a nasal tube or through a port?

As for what you can do... you can love your father until the end. Death is not pretty. The best you can do is make sure he is as comfortable as possible, sit with him, talk to him, and just be with him until the end. As far as how long it will take... nobody knows. He will go in his time. I went through this with Dad last March. It was one of the most difficult times of my life but I also treasure each moment I spent with him. Know we are here for you, welcome you to our little corner of chaos, and will help in any way we can. We have great ears and big shoulders

Love, deb

 
Old 01-19-2011, 09:19 PM   #3
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Re: Puzzling rapid decline

It's wonderful that he still knows you. Give him a hug from you and then quitely from all of us. Reasure him that you love him. Read to him if he likes reading. For my MIL this Christmas my husband and I sang Christmas songs to her. It appeared that she was alseep. But when we stoped singing she would look at us and although she couldn't tell us what she wanted, we knew she wanted another song.

Engage his mind in remembering the good times with you and the other adult children. Focus on the positive and enjoy what you can. Make memories for yourself and him. He may not remember them for long, but you will!

Hugs

 
Old 01-20-2011, 07:57 AM   #4
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Re: Puzzling rapid decline

Thank you both for your replies and kind words. I was very emotional when I wrote that (novel sized) post. As far as stopping the tube there are family factions to deal with. Plus when I did mention it to a staff person at the nursing home I got the idea that it would not be easy. I am going to be asking questions in that regard just the same. I have brought it up to my brother and he seemed shocked and said he needed to think about it. He is suffering greatly with what is going on with my dad as well, probably moreso than me. Dad coming back from the repiration pneumonia was like a miracle. We had the priest on Monday and on Wednesday he was sitting up smiling at me. That is what swayed us to the feeding tube. We thought his will to live was so great and the tube would allow him to get nourishment as he came back (at least somewhat) to his baseline. We were wrong but as I think about it I understand the thought process behind that decision. I am happy for this community. I thank you very much for this space to talk about it. Friends and other family members want to help and I feel bad for them when I vent because there is really nothing they can do except listen and that makes them feel helpless. Thanks again!

 
Old 01-20-2011, 11:51 AM   #5
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Re: Puzzling rapid decline

As for your post, I could tell you were reaching the end of the proverbial cliff that we all tend to fall off of from time to time. Don't worry about how many words it takes to let go of the emotions you are feeling. Sometimes you can't condense such emotions into a paragraph. You need to vent. What you let go is easier to handle than what you keep bottled up inside. That is the true blessing of this forum... along with the fact that you are with those who truly understand what you are saying and going through. Friends who are not in this situation mean well but they have a difficult time understanding or knowing what to say. That is expected. If you haven't been here it's hard to know. They do the best they can but there is nothing like connecting with somebody who is or has walked the same path you are on. I give thanks for this board every day!

I do understand your dilemma Blackiesgirl. You make the best decision possible with the information you have in the moment. Afterward, there is the benefit of hindsight that you were not afforded in the moment of decision. So I do understand the hows and whys. Once the feeding tube decision was made, it is hard to go back. You do need to consider your brothers feelings and emotions struggles. What I would not do is let the nursing home dictate my decision. Talk to the doctors, talk to your bother, talk to any other person that might have insight. Understand the benefits and what the prognosis is with and without the tube. Consider the complications of the tube and the affect it has on your Dad. Most of all consider your Dad's wishes and what would be best for him.

I would have loved for my Dad to stay with me a little longer. I didn't want to lose him to this disease. Selfishly I wanted to hang on to every moment with him. But when I took a long look at his struggle, his discomfort, his quality of life... I had to give him priority. I had the benefit of a living will and medical directive. I had Dad's wishes in writing. I knew, if there was no likelihood of a return to a functioning life then he did not want his life prolonged. The end stage of dementia, to him, was not a functional life. That was clearly stated. So no matter what, with dementia, he would never have a feeding tube. That made my decision... a non decision because he had already made it for me. This is something we all owe to our children and loved ones.

At this point you just have to work through the process, trying to be logical rather than emotional, and see where it takes you. If you do want the tube removed, then lean on the blood test which tells you that it is not doing what is necessary for your Dad.

Have you contacted Hospice? Beyond the medical care they provide for the end of life care, at least here, they have an amazing emotional support system and the knowledge to know how to approach these difficult questions. They could be a wealth of information for you since they also offer Palliative care. That is the emotional and functional information needed to make these kinds of decision and the practical ways to achieve what you wish. It's worth a try

I keep you, your Dad, and your brother in my thoughts and prayers that you will find your way through this difficult time.

Love, deb

 
Old 01-21-2011, 06:42 PM   #6
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Re: Puzzling rapid decline

It is always difficault to make these chioces. However something I have learned is as a family unit try and talk through the problems and decisions. Hopefully you can work together. My husband's sister and brother were great and wanted us to make the disicions. However there was a sister who faught us tooth and nail! We suffered with her bullying for a yr! Now she doesn't even talk to us. But we have had to make the "hard choices" and take the blows!
Always know that you can "let it ALL hang out here" I have manytimes! and I am sure I'm not finished yet. But everyone accepts you for who you are and your needs!

 
Old 02-01-2011, 08:42 AM   #7
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Re: Puzzling rapid decline

I am curious about something. Has your father received any anesthia recently? Maybe prior to the beginning of these problems?

 
Old 02-01-2011, 10:05 AM   #8
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Re: Puzzling rapid decline

Yes, my father had anesthesia to put in the feeding tube. After that he never was the same. I never thought that it could be the anesthesia. He is still in the same state. Awake for only minutes and sleeps the rest of the time.

Thank you all for your responses. I haven't checked in on here in a while.

 
Old 02-01-2011, 10:54 AM   #9
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Re: Puzzling rapid decline

Yes, Anesthesia does affect cognition. It's complicated but it actually affect a mechanism in the brain that is also connected with dementia. It absolutely can cause cognition decline in the elderly. What you saw, after the tube procedure was more than likely the effects of the anesthesia.

The latest research showed anesthesia induced tau phosphorylation at some selective phosphorylation sites possibly as a result of anesthesia-induced hypothermia at specific hyperphosphorylation of tau protein at the AD-related abnormal hyperphosphorylation sites suggests that tau hyperphosphorylation might be the mechanism that links anesthesia and the risk of cognitive impairment and/or AD.

So now there is actually scientific research that connects the Anesthesia to the decline in cognition Those that have been through what you have seen knew this connection but the medical community was slow to accept the possibility. Hopefully now they will!

Love, deb

 
Old 02-01-2011, 11:28 AM   #10
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Re: Puzzling rapid decline

So in dementia patients this anesthesia effect is permanent? It will be 2 months since my father had the anesthesia. The only good thing I can say when I do get him to wake up and I ask him directly if he is in pain he states an emphatic "noooo". I know he has some awareness because the other day when I took his hand when he was awake he said "cold" and yes it is pretty cold in NY. Thank you all again.

 
Old 02-01-2011, 01:17 PM   #11
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Re: Puzzling rapid decline

Blackiesgirl.. it is hard to say what will happen in the specific case of your Dad. Just wanted you to know that there is a connection between anesthesia and a decline in cognition. In some, the cognition comes back. In some it comes back partially. In some it doesn't come back. If it has been 2 month and you have seen no improvement, it may not come back.

It is good that he is not in pain and that he can give you smiles from time to time. Just the word "cold" probably brought a smile to your face. Just watch for the non verbal signs of pain... flinching, fist clinching, furrowed brow, agitation or restlessness. Unless you see evidence of pain then he is comfortable... so just sit back and enjoy the time you have left with your Dad.

Love, deb

 
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Old 02-07-2011, 05:22 AM   #12
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Re: Puzzling rapid decline

I asked about the anesthesia because I went through this with mother and it can be very frightening. When she broke her leg and required surgery she was mentally "all together all together" She came out of surgery in what looked like fulll blown AD or dementia of some kind. It has taken mom almost 1 and 1/2 years to get back to 75 percent.

I was not only not prepared for anything like this, but no one even told me this was a possible side affect. All I knew was that "this woman" who was doing and saying all this was not my mother. I could tell no one believed me, OMQ! it was hard. So, I know how this has affected you. My prayers are with you. But at least you now know what is wrong.

 
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Old 02-07-2011, 05:55 AM   #13
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Re: Puzzling rapid decline

Hi this or other cognitive difficulties have happened with other old people with anesthesia for the rectal area also. At this age the kidneys and liver no longer function the way they used to. Theoretically then something that causes sleep may still linger. Paracetamol is a drug that lingers in the body 5 years even with the more healthy and contains the poisonous benzene ring (also the benzene ring is in sodium benzoate a food additive). I think I would want to try putting a steam activated charcoal poultice on a large area of skin to see if some of the toxin that may be there can be adsorbed. What meds are currently being taken?
Are antacids being taken?

 
Old 03-02-2011, 12:25 PM   #14
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Re: Puzzling rapid decline

Thanks everyone again for all of your responses and input. My dad finally did pass away on 2/4/11. I was lucky enough to see him hours before he passed and was the last one to see him alive. Even though I was told that day by his nurse that his condition was the same, vital signs good, no infection or fever, I could tell that there was something different about him. I stood a while and rubbed his head. He was jumpy and seemed agitated (I don't know if that is the correct word). The doctor called at 9:45 that evening. As soon as I saw the # on the caller ID of course I knew. I thought that I would welcome his passing (excuse that word) because he was just existing, fed through a tube, couldn't speak, etc., but I am very shocked by the saddness that I am feeling. I have been talking it out with family and friends and I am just going to go with my feelings, not hide them, not bury them, not deny them, like I did 32 years ago when my mom died. My dad was a life goes on guy and that is exactly what will happen. Thank you all again.

 
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Old 03-02-2011, 01:40 PM   #15
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Re: Puzzling rapid decline

Quote:
Originally Posted by sinceuis View Post
I asked about the anesthesia because I went through this with mother and it can be very frightening. When she broke her leg and required surgery she was mentally "all together all together" She came out of surgery in what looked like fulll blown AD or dementia of some kind. It has taken mom almost 1 and 1/2 years to get back to 75 percent.

I was not only not prepared for anything like this, but no one even told me this was a possible side affect. All I knew was that "this woman" who was doing and saying all this was not my mother. I could tell no one believed me, OMQ! it was hard. So, I know how this has affected you. My prayers are with you. But at least you now know what is wrong.
The worst anesthetic is isoflurone. I made sure I wrote that in a place where I can remember it the rest of my life.

Mom got "drug induced delirium" from medications in the hospital. It tooks months--many, many, but she came back about 95%. 5 years later, she really does have dementia. The thing that kills me, hospital personell swear they have dementia when this happens---even though you know your parent was fine when they came in.

 
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