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Why does this disease take all the dignity out of getting old. My mother walked 6 miles a day until she was 81 and her entire life took no medications. I had to watch her wilt away to nothing and now I need to know how to morn her without remembering the end.

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So sorry for your loss.
You can stay a participant on this forum for support, keep checking in or ask any questions, you are welcome here. (In my opinion)
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The best thing I did after mom died a few weeks ago was to put together a series of pictures of my mom from childhood to the last few years. As I looked through the pictures I realized that the dementia of the last 2 1/2 years were not her story but the 85 years of love, laughter and life were her real story. It really helped me deal with the dementia - and her inability to swallow and her failure to thrive. 2 1/2 years of dementia and 85 years of a great life with family who loved her. It helped me put it in perspective.
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To me, starvation is a symptom, not cause of, death. When my dad died (of kidney failure, not dementia) he stopped eating and drinking towards the end. My mother has Alzheimer's, and I asked dad's primary nurse can one actually die of Alzheimer's or from complications. He told me that the disease eventually affects the autonomic functioning of the brain and central nervous system like swallowing and motor functioning. Most die from complications from inability to swallow or pneumonia. All the professionals I have asked so far have answered yes, one eventually dies from Alzheimer's. So I would think that this disease should have been identified as the cause of death. When I received the call saying that my dad died, I had a strong need to know the official cause of death, and they cited total renal failure. It is also an important source of information in terms of genetic predisposition and risk factors.

In terms of how to mourn her without remembering the end, I found comfort in completing the Simple Alternative's Primavita memorial book, which provided a comprehensive compilation of timelines, anecdotes, eulogies, pictures and a family tree. I learned information about different aspects, relationships and events in his life from my siblings and others who contributed to the online memorial. Because dad was a war veteran, there was an annual memorial service for loved ones who died at the veteran's residence during the year. At the end of the service family members were given a bulb to plant in memory of their loved one. I planted mine yesterday, and will always look upon the plant as dad's flower (which I still don't know and look forward to the discovery as it takes root, buds and blooms). I find planting is a way to memorialize your loved one and it has the hopeful and positive message of new life.
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Im sending you huggggs,my angel mom passed march 18th,there are certain triggers that will bring on the tears.I joined a bereavement group which really helps.I also read alot about the afterlife,I know she is with me...
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I was just considering an earlier post. If starvation is going to be used in every case where there is an inability to eat for whatever reason be it cancer, or be it dementia or indeed a whole host of other illnesses then the statistics are going to be very skewed and research funds allocated on the basis of those stats will also be very skewed. It would be interesting to know WHY they put starvation on the COD. Im not sure it can be changed except by a challenge in the courts
When my father died although he died from pneumonia there was also a note which said primary cause pneumonia underlying cause XXXXX cancer so that when stats are compile and funds attributed the information they are using is accurate
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So sorry for your loss. You didn't say whether she was in the hospital or hospice or home but if it was in a facility, you might want to see the administrator and discuss the doctor's choice of cause of death. Maybe they can get him to change it. It certainly sounds like a physician who has no contact with medical records made a diagnosis without information or autopsy. My dad died of cancer, and of course, the last two weeks he did not eat. Had a doctor diagnosed starvation, we would have been quite upset. Starvation is the symptom and end result of an illness or of a deliberate act of denying food. If I were the facility where she passed, I would be concerned with the possibility of a lawsuit. An unscrupulous person could make hay with that.
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There has to be a kinder way to say that for medical purposes. I know we have to put down the reality and the reality probably was a refusal to eat and drink which effectively DOES lead to starvation you would have thought that something like the individual's withdrawal from nutrition - at least it tells it like it is - starvation could imply that she had been starved deliberately and leaves open a door to a rather hefty lawsuit one would imagine ahd that been written for a resident in AL or similar.
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So sorry for such a harsh sounding word. I recently looked up the form that the doctors must fill out for cause of death (I work in Hospice). It has many blanks for them to fill in that shows the sequence of the person's illness. She likely survived her disease to the stage of just no longer processing food, sleeping more than awake and no interest in gaining energy from external sources. All very normal for someone at end of terminal illness. while no intake may have been the final symptom that took place, the word starvation implies that it was unnatural. Likely, the diagnoses that support why that occurred were written in the sequences of events. I too wish your loved one's physician would have taken a moment to think about what can be implied by the word starvation and would have chose differently. If you want to talk to someone about your grief, please call a local Hospice agency, they are required to provide grief support to community members regardless if they were on hospice services. I wish you well.
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Im so sorry you lost your dear mother.Take care...luckylu
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It was a very hurtful and uninformed thing to list as the cause of death. In my experience when the PCG no longer sees the patient they often have no idea what the actual cause of death is but still have to write the certificate. They were usually be advised to list "Multiple organ failure secondary to ie pneumonia" That was for hospice patients.
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First, I am sorry for your loss. I hope as time passes you are able to remember better times with your mom and put her final months into perspective, you know you did all you could for her.
Your post got me doing some research about cause of death in dementia. It seems whoever signed the death certificate was uninformed about dementia and the proper way to report COD. Up to 2/3 of those who die of alzheimers have pneumonia listed as COD with alzheimers as the contributing factor. "Starvation" at end of life in a terminal illness should not be an acceptable COD, anorexia and cachexia caused by dementia would be more appropriate. Data from death certificates is used to track the prevalence of diseases such as alzheimers, so they need to contain the right information. There is so much anxiety surrounding food at the end of life, whether the person has cancer, dementia or some other disease. So often you read of families accusing nursing homes and hospitals of "starving" their loved ones. Imagine if you had not been so well informed about the issue and then read that on the death certificate. I think the doctor who signed the certificate should be contacted or they will continue to do this this to other families.
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I am sorry for your loss. Starvation is a kind peaceful way to die. It's part of the natural cycle of dying. Your body simply doesn't need food at the end. It could have been so much worse, cancer, etc. Your Mom was lucky to have you.
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* do some of the things she enjoyed: walking, gardening, whatever...
* did your mom have a special perfume she enjoyed? Get some
* was there a certain dish your mom liked to fix...get a recipe and fix it for a friend or your children and tell them how your mom made this and when.
* Did your mom have a favorite color? Buy a blouse or pillow sham in that color to brighten an outfit or a place in your home.
* Go to places your mom loved or wanted to go...think of her while you are there.
* Did your mom do a craft or sing a song or have a hobby? Try it or find someone who can teach you...

The mom you knew and know is in your mind and heart and was not the person who was so ill at the end.

God Bless You!
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I am very sorry for your loss! The dr. was not very smart. Probably technically she did starve to death...but Alzheimer's is what should be listed so that other generations can track this.

About ways to remember your mom before the disease (instead of the last part of her life):
*find early photos of your mom and blow one up which shows her in happy times
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Obviously someone who has not personally experienced caregiving for an aging person determines the cause of death. All comments above are spot on and eating less is not uncommon for those nearing the end. You can't force your loved one to eat or drink....they will if they choose to. It is extremely hard to witness and accept, but remember someone up above is calling the shots at that point.
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Who writes the cause of death? Is there any way to challenge that? "Starvation" and "Failure to Thrive" are horrible to put on the death certificate, when, yes, the body is getting ready to transition, so eating less is natural.
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My heart goes out to you. What a cruel thing to put on a death certificate. My mother, 89, with many health issues, has been in a nursing home for two and a half years. During that time she has eaten less and less, these days next to nothing and nothing will tempt her. She's skin and bone and I doubt weighs nowhere near what my labrador weighs.

She's very well taken care of and in no pain, just basically fading away. Perhaps, at the end, the body just doesn't want to eat. If that was how your mother passed, the decent thing to put on the DC would have been "Natural Causes".
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