Expert: Mary Gordon - 6/16/2011

Question
Hi Mary - I am coming to you with unanswered questions about my mom. Three years ago my mom was in trouble. She admitted to me that she could not take care of herself any more, and wanted to know if i would take her in and take care of her. Mom was 78. I took mom in and started getting her checked from head to toe to find out what was going on as i had no idea. Her Doctor found a blood disorder and ordered me to take her to the hospital right away. It took a month but her blood finally decided to come up to normal. while in hospital they found mom to have a mild dementia. The cause of  the blood disorder was do to the fact that mom probably was forgetting to eat at home. I did not know much about what dementia was all about and although the doctors were telling me that i should put mom into a care facility, i decided to take her home. I researched about the disease and studied everything possible to better take care of mom.

  Anyway, i decided to take her to an actual expert of the brain. I was then told that mom had a mild Alzheimer. In April of 2010 i took mom back to see how she was progressing. I was told that mom was in the moderate stage now and she believed that in 2 to 4 years i would not be able to take care of her anymore. For 3 years i was able to keep all sicknesses away from mom. I kept her happy and safe and gave her whatever she wanted, whether it be company, privacy, eggs  for dinner or just soup. We were having a great time.
   Then i noticed mom was starting to cough a little when she was drinking her water. She didn't seem to have to much trouble with her food though, i was being very careful as to give her soft, mushy food. I always did as she had trouble chewing with her false teeth for years now. This coughing with the water was just starting. About 2 weeks later mom was just not right. She was showing signs of a stroke, but her speech was not impaired. I then called an ambulance as her breathing became quick and short all of a sudden. I followed the ambulance to the hospital to find life support on mom already. I was told that she had aspiration pneumonia and low salt levels in her blood. The life support was taken off in 2 days and mom was breathing normally on her own. The antibiotics were working and mom had beat it. She had a swallowing test done as they would not feed her without one. Mom failed. I was told that they would have to put a feeding tube in to nourish her. I said,"ok" without knowing of the dangers. I figured she needed to eat and drink. Mom was then moved out of ICU and given a bed. Mom kept pulling the feeding tube out in the night. They started to sedate her in the night. I did not know that sedation can be dangerous in the elderly with feeding tubes.
   About a week and a day in, mom looked great. She was oh so thirsty and hungry and wanted so much to eat and drink. She literally was trying to get out of the bed. Another swallowing test was done. She was swallowing ok most of the time but not ok atleast once. They said they could not take the tube out as mom could choke and they would be liable for a law suit. The doctors wanted to put a tube surgically in her stomach to nourish her but the long weekend was here and it would have to wait. The new Xray showed the pneumonia to be all gone and her salt was back to normal. Over the weekend, mom had pulled the feeding tube out again. She clearly didn't want it but the doctor said her blood pressure was coming up and they needed to put the tube back in her nose so they could give her the medicine. The next day mom developed another fever. I panicked and told them to please find out why as they did not know. They started her on antibiotics and ran a urine, and blood test and lung Xray. All came back clear of anything bad. Everyday for 3 days i watched my mom disappear silently away. One day she is talking to me, the next day, just a few words and then the next day i lost her totally into some vegetative state. A week ago mom was still walking with a walker. She was smiling, laughing and enjoyed her movies and time out to visit and shop. This day when i came in to see her i could not believe what i was seeing. I ran to the nursing station and asked what was wrong with my mom. They came in and told me that mom was just sleeping and was worn out from the fever.
I didn't think so but what did i know until now.
   I left those last 3 afternoons as if my hands were tied. I knew there was something seriously wrong but what could i do. The doctors said they didn't know and they were trying. That evening my sister went in to visit her and found her all alone in the room struggling for breath. She ran to the nurses station and screamed for them to come quick and for 10 seconds they just stared at her because she was panicked. The doctors came in and surrounded mom then told my sister that mom was taking her last breaths. I got to the hospital in time to see her for an hour before she went. The night doctor then told us that sometime in the last few days mom had lost oxygen to the brain causing it to die. Somewhere along the way she either regurgitated or her sinus or saliva went down where it wanted to, do to depressed swallowing and cough from the feeding tube. Mom died of aspiration pneumonia. I then told him that i did not know of such dangers of the feeding tube. He said,"oh, you didn't?" "So you mean she choked to death?", I asked. The doctor then told me that, that pretty well what happens. I can tell you Mary, that i was there everyday most of the day and always wondered why i only saw a nurse twice in a six hour period. When someone on continuous feed, aren't you supposed to check it every hour. I knew mom was not sleeping, but i didn't know what was wrong, i do know that i had never seen a look like that before. I look like she is looking at you but she is not. She is not even there.
   She was dying and nobody told us until the end when she was found just lying there alone by us. Why was she not checked for the biggest danger of a feeding tube? Why was her oxygen level not checked frequently? Was it her time or was her time brought on? Mom's swallowing problems were just starting which means she still had quite a bit of her swallowing and the feeding tube should not be used on patients who can still swallow. Why wasn't i told of the danger of a feeding tube? If i would have known i would of not aloud it. I would of taken mom home with special care people and fed her the food she loved to eat in the safest way possible. If problems happened again at least it would of been natural and she could die with dignity. I know mistakes can happen and i know the doctors probably did their best to their knowledge, but i can't help but feel their was neglect and bad decision. I feel i could be haunted with this for the rest of my life. Mom trusted in me and always felt that everything would be ok because i was looking after her. The only way i think i can get over this is taking comfort in the fact of what was around the corner for mom, and knowing that she won't have to go through it. I still believe that life is precious, whether it is a day, a month or a year. Mom still had her quality of life which makes this extra hard. Let the message be put out there, that every possible angle should be considered before using a feeding tube. I know they can save lives but they also come with a lot of complications, that can have serious consequences. Please Mary, tell me if she was in any pain or discomfort. I need honesty. I have left messages with the doctor at the hospital asking for a bit of his time to explain to me why and how mom died exactly and have had no reply in weeks. Please give me honest answers as no one else will.

Answer
I am very sorry that you and your mother were not treated in a more compassionate manner during her final days.

Clearly, the hospital staff did not have much experience in dementia care and related end of life issues, and you were not adequately informed or supported in what must have been a very stressful and frightening time. Options should have been more clearly presented to you and honestly discussed.

As you know, it is very common for people with advancing dementia to develop swallowing problems. It is part of the disease - they develop "dysphagia" from loss of muscular control.
They have difficulties in chewing and managing food in their mouths, and swallowing. As you observed, purreed foods work better, but they often choke on liquids. Aspiration pneumonia is a major risk for people at this stage with or without a feeding tube. They often aspirate saliva, stomach acids, food, drink - anything in their mouths. Surprisingly, there is no evidence that tube feedings prevent aspiration pneumonias. Even if tube fed, you are always producing saliva. Tube feeding doesn't correct the swallowing problem with dementia so the person is still at risk of aspiration pneumonia.

So, tube or no tubes, this was always a huge risk for your mother, and although I don't personally agree that a feeding tube was appropriate, it may not be the cause of her aspiration pneumonia. My objections to feeding tubes have more to do with the fact that they don't improve quality of life or reduce suffering, and there is no evidence they increase life span.

Don't torture yourself over your mother's passing. You did the best you could with the information you had, and as you mentioned, she was spared the truly awful natural end of dementia. My mother in law lived to the very end of Alzheimers and it is not something you would wish on anyone. Thin as a skeleton, propped in bed, incontinent, helpless, unable to talk or recognize anyone, not aware of her surroundings - and finally, they stop eating and drinking and shut down. It's brutal on everyone, and it can go on for years. So your mother was spared all that. It was like my mother in laws worst nightmare come true.

Pneumonia used to be called the old people's friend for a reason. Generally it tends to be a very gentle and pain free death - it doesn't involve the pain of a cancer for example. They just slowly drift away. Her dementia would also have made her very foggy about what was happening to her. As you know, when people with dementia are under stress or ill, it increases their confusion, which can be merciful. With that and medication, I'm sure she was not aware of her situation, what was happening, much less be tortured with fears or regrets.

I know you are grieving her loss and wishing things could have been different. However, I'm equally sure you wish she never had to go through the misery of a dementia and all that went with that. None of it is fair, and neither of you deserved it - but it is what it is, and what happened, happened. You can't change the past.

You were a good, caring, dutiful daughter, and everything you are feeling is a testament to what a great mother she was, and what value her life had. She would not want you to be beating yourself up over things that you can't change and that were in no way your fault. She had a gentle peaceful death, she is at rest, and all the suffering is over for her. She would want you to move on and look ahead and to continue to live a positive live.

She was saved a lot of misery and suffering by being gently carried off before the final stage of her dementia. You are lucky she was still herself. I know that is part of what hurts - because you weren't ready for her to go. If she had lived to the end stage of her dementia, you would be tortured because you would be so helpless to do anything for her, and it can be like having a corpse laid out for months without the closure of a funeral. The person has passed away in every way that matters other than their body.

You are also lucky in some ways in that you were able to be with her in the end, although you were not prepared. People with dementia are very frail and it doesn't take much to tip the balance. They are like an egg balanced on end, and any little thing can cause them to enter a sudden spiral to the end. Sometimes something like a little cold or a minor fall can do it. It can be shocking when you are not emotionally prepared.

I do truly wish the hospital had been more helpful to your family. Critical care hospitals are not really the place for people with advancing dementia.

Hang in there. Whereever your mother is, she's proud of you. You are a fine woman, and you have nothing to feel guilty over. You can regret she ever got dementia, but don't regret that your mother went without pain or fear. It was her time, and sometimes no matter what anyone does, the outcome is the same. Think of the long happy life she had, and what a wonderful person she was, and be glad of her.

Mary