About ten years ago, my mother was diagnosed with early onset alzheimer's. Just 62 now, she is in the final stage of the disease. Two weeks ago she was brought from her nursing home to the hospital because she had been vomitting a lot and was dehydrated. A week later, she was back in the hospital for the same thing. After a bunch of other tests, they did a swallow test and found that she is no longer able to swallow, and therefore can no longer naturally eat. We, as a family, have decided not to use a feeding tube. This is also something she discussed at the onset of the illness with my father years ago. She is recieving fluids through an IV. Here is my question, which no one wants to answer. How long can this go on? I realize everyone is different, but there has to be some time frame that is in the range of normal. If anyone has any knowledge on this topic or has been in this situation, please- any information would help.

Missy

Dear Missy,

I am so so sorry about what you and your family are going through.

I don't know the answer to your question, but I just want you to know we care for you and are praying for you. Being a member of this Board is at times my life line to sanity. God bless you.

Martha

Hi Missy,

My sympathies to you and your family.

I don't have the answer you need either. My 88 year old mother passed away before getting to the stage of not being able to swallow. She had a living will and in the last months had lost so much weight. I felt to honor her wishes I should have her doctor write an order for "comfort care" so she would be kept comfortable until her body gave up. As it happened, a week later she was at the breakfast table and just quietly slipped away.

I heard recently you can live only 3 minutes without air, 3 days without water, and 3 weeks without food. Those numbers apply to a healthy person. I'd guess your mother has become frail and very debilitated from the disease and would have few reserves of strength to draw from. The IV fluids provide support to the cells, but little actual nutrition to the body. Your mother's doctor might be able estimate how long she might last, with the understanding that it's just an educated guess.

Be good to yourself in these difficult days.

Wishing you well - Barbara

Hi Missy,

I just want to extend my deepest sympathy to you and your family.
I'll say a special prayer for all of you.
Peace be with you.
Barb

Bosmom,

It must be very difficult for you right now and many emotions are running through your mind. Once your mother entered into her last stage of Alzheimer's her time was greatly reduced. The last stage is from 1 to 3 years, but I would imagine from what you have said she is probably nearing the end of stage 3. I am no expert, but I have done a lot of reading. I have my mother with me and she is mid way through stage 2. I have a long ways to go.

There is nothing more difficult than watching a loved one go through this. Most times it's harder for the caregiver and thier families. I keep faith in knowing that when my mother leaves this earth she will leave with her memory intact. Her soul has all those memories. They are just obstructed in life.

If you need to talk you can e-mail me. You are making the right decision and you need to hold on to faith.

Cindy



[ please carefully review the posting rules - no emails ]

Missy,

I'm so sorry that you are going thru this suffering too. Nursing Homes leave much to be desired in terms of providing adequate care of our loved ones. My dad is in the last stage and has been having problems swallowing for a few months. For weeks we were telling the nurses and the doctors at the nursing home that we heard congestion and a rattle in his chest when he breathed but they kept telling us his lungs were clear. Last Friday when he could barely breath, he was brought to the hospital where for 5 days he was treated for Aspiration Pneumonia. The hospital discharged him with orders that his food must be pudding thick but his first day back the nursing home gave him unthickened soup. Then the next day the nurses-aid scraped his head on the lift that they use to get him in and out of bed. At the time treating the pneumonia seemed like the right thing to do but I wonder now if we made the right decision or if we should have chosen 'hospice' and let him pass comfortably. It just feels like any decision is the wrong decision - he's already been thru so much for such a long time; I just don't want to see him suffer anymore. My Dad also chose when he was of sound mind, no artificial life support or feeding tube. Our family has decided that should he get pneumonia again we will choose comfort over treatment as well.

God Bless :angel:

Dear MC58, I am sorry that you are going through this agonzing time. It is impossible to know what decision to make. Whatever we do we may regret it later. It is perhaps the most difficult thing in life. Let us know how you get through it. We are all caregivers of people in various stages, and all will face this same thing sooner or later. Those who have been there are the only ones whose ideas I feel I can really trust. It is too easy for an 'outsider' to come with lists of how you should act, what you should feel, what you should not feel ..etc. God bless you. You and your dad are in my prayers.

My Mom signed a 'do not rescusitate' order when she was still in her right mind. Even this will not make it easy, when the time comes.

Love,

Martha

Missy0314,
I am so sorry your mother is so ill. My mom suffered from dementia, but she was okay at times and other times delusional. She went into hospital July 27th and I don't know what happened there. One day she was talking and the next day they said she did not know anything. She had needed an operation on her heart. They told us she had irreversible brain damage. All she did was shake her head back and forth; she was 77. Her heart was not beating right and so many other things were shutting down. The doctors asked us what we wanted to do. They said we could tube feed or not feed her and the outcome would be the same. Mom laid in a coma like state, shaking her head. On August 21st they were going to move her into a nursing facility. She had no food and was hanging in there. Mom was a fighter and a sweetheart. Tube feeding is a personal decision and should be based on your loved ones medical condition. We three children agreed not to tube feed. After over 3 weeks I got very upset because withholding food for that long seemed cruel to me. I demanded they tube feed her. They moved her and began tube feeding her. It was a big mistake. After that mom began spitting up brown fluids. I think feeding her hurt her more than it did any good. My mother never opened her beautiful green eyes since July 27th. We had the hospital pastor come and pray with us. He talked to my mother and she opened her eyes and looked right into his eyes. Her eyes were now blue? She was my mother, the woman I knew for just a few seconds. She understood. We told her was okay to go and she closed her eyes and in less than 15 minutes she passed away. Sometimes I wonder if the decision I made was based on my own feelings rather than what mom would have wanted. It is just so hard to watch your loved ones slip away. I thought feeding would keep her here, but it didn't. Search your heart and you will find the answer. I will say a prayer for you.

Dear Summer Rain,

Thank you for sharing this beautiful and horrible story with us. You did what you thought was best. It would not have made any difference if you had not resumed tube feeding. Your Mom went to a better place.

This horrible disease is devastating so many well-meaning, good people. It is a tragedy.

God be with you.

Love,

Martha

I am kind of new here, but I did visit these boards once a long time ago. I think I just lurked.

I lost my Daddy after taking care of him for 7 years and I know how hard it is. The stories are so familiar. We kept him at home as long as we could. The last 8 months he went into the hospital. He had been having difficulty swallowing for somtime. I was also dealing with Mom who couldn't understand the disease and couldn't deal with it.

Dad was dehydrated and he also had a UTI. Mom was facing surgery so the last 8 months we put him in the nursing home that was close by. We stayed with him. Even if we did manage to get the purred food down him it wasn't doing his body any good. He had already started loosing weight when he went into the hospital. I tried to tell MOm what was happening but she just didn't want to face it.

They gave him IV's and antibiotic which perked him up a little. Dad had vascular dementia. He new who we were but he had no short term memory and it affected his motor skills the most. He had been unable to walk for several years. We were all so worn out physically and mentally by this time.
Daddy lived 8 months only because we kept him hydrated. He slept most of the time except when I gave him little bites. He stayed congested and had aspiration pneumonia off and on. It never really got better. He had a medi port that they gave the IV's thru and the port got infected and had to be removed. The nurses mentioned a feeding tube, but all the doctors told me my Daddy was at the end. We new that and we knew a feeding tube would not help him. Daddy passed away in Dec and I miss him so much. It leaves such a void in your life, but I know we all did the best we could and Daddy knew that too. We kept the IV fluids going longer than we should really. It wasn't good for him. Being stuck for blood work and everything, but it is hard to let go. There is no easy way.

My Dad was such a trooper. I stayed with him and held him until he went home to be with the Lord. I was Daddy's girl and I miss him so much. I grieved for what he had to go through. It was hard, but I learned so much over the years. He suffered to long and I know he didn't want to live that way. My Dad was such a proud man, but he tried to make it easy on us as he could.

You do the best you can and you do what you feel is best at the time and then have no regrets. Thats all you can do. Have faith and no that God is in control. I hope I can help others that are going through the same thing. You just don't know unless you have been through it. We have to lift one another up and edify each other. Learn from each other. No that it is ok..all the things that you are feeling all the things you are going through. You are not a lone.
You will get through it .. although we miss them greatly you are glad they are not suffering anymore.

Much love to you.

Praying that the Lord gives you strength.
Neenee

Dear Neenee,

what beautiful thoughts. I appreciate all the people who have been down this path and still come back to give us a hand. You really went that extra mile with your Dad. God bless you.

Interesting that you brought up dehydration. I just read an article saying dehydraton can cause full blown 'senile dementia" (this is a somewhat older book) . and providing lots of fresh drinking water can help a lot. THAT is a good idea ... I know my Mom forgets to drink water and doesn't feel that she is thirsty. The times when she was wandering around the neighborhood trying to open strange doors with her house keys were all from June to October, in the hottest season.

Of course from mid October on, she always had an Aide with her, or I was, when she went out. So there may or may not be a connection between heat, dehydration, and confusion..


Love,

Martha

Interesting.... dehydration and dementia. Your body needs fuids to make blood. It needs fluids to carry the blood. It needs fluids to help balance our hormones. It needs plenty of fluid for every ceel in the body. So it makes perfect sense that if a person with dementia becomes dehydrated, they're symptoms of dementia will become worse.

Love, Barb

I took my Grandmother three days, but her circumstances were a bit different. She couldn't swallow either and asperated in her sleep. It went into her lungs and that was the begining of the end. This was on a Friday night. By Saturday she was gasping for air and fighting to breathe. As a family we made the decision to make her comfortable, but decided not to take her from the hospice home to the hospital. She didn't eat or drink anything for two days. She just couldn't. She died at 6:00 PM on Sunday. She was 1 month from her 90th birthday.
It was hard to watch her go through this, but what a blessing that she was no longer suffering and now with God.

You have to understand a lot depends on the stage they are in. When in the middle stages you have to make sure they get fluids and you can even give them IV fluids every now and then. Dehydration will make anyone disoriented and confused so you can imagine how it would affect someone who is already confused.

In the end stage When the body systems start shutting down it doesn't matter how much fluid you give them or food their body doesn't break it down. It doesn't break down the enzymes and they become malnurished despite all the Ensure and vitamins you put in their IV fluids. Even though they are taking in fluids theiir electrolytes get out of balance. The last 8 months there was so much fluids going through Dad but it was just giving him enough to keep him hanging on and it kept getting worse. The last 2 weeks before he died his medi port became infected and there was no good vein we could stick. We all decided enough was enough and we let him go.

It is a terrible disease. I remember when Dad got pneumonia a few months before, the doctor didn't think he would pull through. He said, they used to call it "the old timers friend" because it would let them pass on before they had to suffer to the end of the disease.

It is very hard and it is hard to know how to let someone go and be comfortable but you trust in God and know you did the best you could do. I know we start out trying to cure them and then we try to keep the disease from progressing, then comfort measures are the improtant thing.

I know my Daddy is in more capable hands now. He didn't have any quality of life for such a long time. I would have loved to kept my Dad here with me forever. We are selfish that way, but I knew my Daddy was ready and it was time to let go.

I grieve for what he went through. One good thing is that he didn't seem to suffer any pain. He just went to sleep. I miss him so much sometimes I can't stand it, but there is victory in Jesus. I know I will be with him again someday.

Take comfort in Gods love. Just be there with them, hold them and talk with them. You will not regret it.

Much love to all.

I took my Grandmother three days, but her circumstances were a bit different. She couldn't swallow either and asperated in her sleep. It went into her lungs and that was the begining of the end. This was on a Friday night. By Saturday she was gasping for air and fighting to breathe. As a family we made the decision to make her comfortable, but decided not to take her from the hospice home to the hospital. She didn't eat or drink anything for two days. She just couldn't. She died at 6:00 PM on Sunday. She was 1 month from her 90th birthday.
It was hard to watch her go through this, but what a blessing that she was no longer suffering and now with God.

My Daddy did that too SusieQ. He aspirated not just when he tried to eat or drink, but they start aspirating on their own fluids. It is very hard to watch them slip away. I watch alittle of Daddy slip away each day for over 7yrs and it was so heartbreaking. It hurt my Dad to have to go through it. He tried so long to fight it. That was his nature. I am glad he isn't suffering anymore.

I wish I could have let Dad pass away at home, but my sister had Mom convince Hospice was a bad thing. I know it worked out for the best though because Mom was breaking down on us and then she ended up in the hospital herself. She is doing a little better now, but her short term memory is leaving her and I am afraid of going through it again. I am just not ready to face it again. Keep her in your prayers.

Much Love
NeeNee

I had a patient who got water through a feeding tube and nothing else and she lived 6 weeks. No other problems though- no infections or breathing problems.

It is terribly sad to watch a loved one decline with dementia. After being treated at the hospital for 5 days for aspiration pnemonia, Dad has been back at the nursing home for about 3 weeks. His food must be extra thick pureed but he still is having swallowing problems. Also he is eating much less than he used to, sometimes he lets out loud sighes inbetween small spoonfuls which I interpret as some degree of distress and he trys to clear his throat frequently; I can't even begin to describe how upsetting it is when he starts choking.

Thanks to all of you for your support and for sharing your personal experiences.

God Bless :angel:

It is terribly sad to watch a loved one decline with dementia. After being treated at the hospital for 5 days for aspiration pnemonia, Dad has been back at the nursing home for about 3 weeks. His food must be extra thick pureed but he still is having swallowing problems. Also he is eating much less than he used to, sometimes he lets out loud sighes inbetween small spoonfuls which I interpret as some degree of distress and he trys to clear his throat frequently; I can't even begin to describe how upsetting it is when he starts choking.

Thanks to all of you for your support and for sharing your personal experiences.

God Bless :angel:

I went through 8 months of that.. I know how distressing that is. Just try to feed very small bites. I would raise Dad up as high as I could and make sure his chin was pointed down, that keeps the food from going the wrong way better. In the final days it is more about comfort. There is a thick protein vitamin drink they called it Med Pass when I was taking care of Dad. It is better than Insure. Have them thicken it to a pretty thick paste. It has a sweet taste. It is better to be too thick than too thin. If it is too thick thin it with a little honey. It goes down better than the food. I fed that to Dad first then little bites of thickend fruit or something that had a good flavor. They don't have much taste and some things tasted better to Dad. The filling of a pumkin pie is good. Believe me it made me feel better if I got Dads food down him, but it was more for me than him. It made me feel better. Just take it one day at a time and do the best you can. When the body system starts shutting down it doesn't need food so they don't want it.
My heart goes out to you because it is all still fresh in my mind.
I will be praying for you.

Love
Neenee