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How long can mom go on like this? Ending?


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Old 10-11-2013, 09:52 AM   #1
Viking64
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Question How long can mom go on like this? Ending?

Mom age 81 has Dementia and Parksinsons (Parkinsons at least 10 years, Dementia at least the last 3 years). Her mother lived years with severe dementia until she passed last year at 101 years. Even her grandmother had severe dementia.

Mom Anyway, she has lost 15 pounds now in 3 weeks. (she weighed about 160 pounds.) She is only taking a small amount of food a day. One bite of this or one bite of that, and says she is full.

She doesn't get off the couch at all in the last 2 weeks, (only got up to pee before) and now leaves my father to change her diaper. (she is delusional too and says SHE takes care of my father and not the other way around).

Liquids have always been a problem for her, her whole life. So, she has been dehydrated a two times in the last month.

Oh, and she is giving up taking her daily medications, and sleeps a lot, can talk in sentences every now and then.

She called her sister two nights ago and said she was soooo happy, and everything was sooooo beautiful, almost like being in Heaven.

She has always just been "waiting" around to die since my brother died in 1991.

This is pure agony. There no easy way to lose someone in your life, but this is pure torture.

Can anyone help with general timeframe here? Now that she is losing 5 pounds a week, and barely eating and drinking, is her passing more likey weeks away, or still months away? I wish this was over and she was at peace.

 
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Old 10-13-2013, 03:43 PM   #2
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Re: How long can mom go on like this? Ending?

Hi Viking I am sorry you are going thru this with your mom. It does not sound like she is doing well and that must be really hard on you and your dad. As far as a time frame for life expectancy the I would imagine best person to find that out from would be her doctor, have you or you dad talked to him or her?

 
Old 10-15-2013, 06:25 AM   #3
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Re: How long can mom go on like this? Ending?

The doctor said that her body is starting to shut down, but my sister did not ask specifics. (That was two weeks ago).

 
Old 10-17-2013, 07:05 AM   #4
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Re: How long can mom go on like this? Ending?

Viking, sometimes it is difficult for family members to ask doctors questions about people they love (or even themselves) and/or sometimes doctors don't want to talk about end of life issues also. I assume your sister has healthcare power of attorney for your mother but it sounds like you have a good relationship with her? If it hasn't already been brought up I would hope your sister has asked the doctor about ordering hospice care for your mom. Again there are doctors who don't like to order hospice because it's like 'giving up.' If her doctor resists this, I would (if she were my mom) find one who will. Hospice nurses are extremely experienced in letting you and your sister know what signs to look for in your mother as far as when she is may be actually dying.

I will add, however, under Medicare guidelines hospice cannot be ordered (generally) unless a patient has a prognosis of six months or less. If your doctor feels like your mother is not there (because you certainly don't want claims to get denied), then he feels, as a doctor, that she has six months or more to live.

I hope this is helpful information; please check back and let us know how your mom is doing.

 
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Old 10-17-2013, 04:46 PM   #5
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Re: How long can mom go on like this? Ending?

It all depends if there is more going on than the dementia. It depends on a number of factors. My mom had dementia for 4 years and was in a Nursing Home. Her appetite wasn't the greatest, but somehow she managed to maintain a weight even though she would forget she ate. She was always a petite woman. Then she quit coming to the cafeteria and would get out of bed in late afternoon and get a sandwich. Claims that is all she ate. In November she got sick with heart problems and was hospitalized. They treated her the best they could and sent her back to the Nursing Home. That was in the beginning of Dec. She hardly was eating when she went back, but survived on a bit of Boost. All she was taking in was a Tbsp of soup here and there, would drink all of her coffee but would not eat solid food, she would spit it out when someone tried to feed her. We thought that she wouldn't last more than a week. In the end it got where her intake was next to nil but she managed to hold on for 3 and a half weeks and then passed away. I remember questioning the nurse about this very thing and she said, it may surprise you but she said some hang on for weeks just taking in Boost. I know the agony of watching them like this. It is very painful to watch.

Last edited by dorri; 10-17-2013 at 04:52 PM.

 
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Old 10-18-2013, 09:45 AM   #6
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Re: How long can mom go on like this? Ending?

Viking. That type of weight loss is actually called "failure to thrive". Both mom and dad had that diagnosis. The were also on hospice with that diagnosis.

As fir the time left..... no one can give you that information. It could be days or weeks or longer. The body can survive on very little. Hydration is the most important. But mom is getting hydration from all she eats not just what she drinks. With nothing at all you are probably looking at a few days. With bites here and there it depends on her bodies needs and what she intakes.

I do wish for you the courage and strength you will need. Just know that at the end we do not feel the same hunger thirst pain sensations. Just be there for your mom.

Love. Deb

 
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Old 10-21-2013, 06:26 AM   #7
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Re: How long can mom go on like this? Ending?

Thank you all for replying with advice, information, and situations. Mom still at home, dad still trying to take care of her with the help of my sister. (I am across country in another state).

We are still in a holding pattern. No better, no worse. She still sleeps mostly, but does take one bite of a hamburger everyday. She is drinking very little, but that has always been par for the norm.

Oh, and no my sister does not have power of attorney. Although our names are on their checking account and deed. That is all they have. She does has a DNR for both parents. What would power of attorney do at this point?

Barbara

 
Old 10-21-2013, 10:46 AM   #8
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Re: How long can mom go on like this? Ending?

Barbara at this point you probably could not get a poa. Mom would have to be able to understand what she is signing. As long as somebody else has their name on all deeds and documents you should be ok. I do hope for all of you that this will be an easy transition. Oh. Hospice will come to your dads hone to care for.mom. they have great services to offer. It might be worth investigating

Love. Deb

 
Old 10-23-2013, 10:47 AM   #9
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Re: How long can mom go on like this? Ending?

Barbara, I can only echo what Deb said about hospice. My husband was in a residential hospice for 2 1/2 weeks, as I was not strong enough to care for him at home even if we had the space (we moved to a one bedroom in a retirement community over a year ago). Fortunately we had LTC and resources that covered the hospice room and board. Once the "dying process" started, identified by the mottled skin of the extremities, they gave him sublingual morphine, and he died about 3 days later. Although it was difficult watching him fade away, it was what he had requested in his health care directive. A DNR wasn't much help when the first doctor wanted to put in a feeding tube; I simply pointed out the request not to have artificial food or liquid in his health care directive and changed to a more supportive physician. It's been three months now, and although I know I did what both of us wanted, it was the most difficult thing I have ever done.

Arleeda

 
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Old 10-23-2013, 10:49 AM   #10
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Re: How long can mom go on like this? Ending?

Barbara, I can only echo what Deb said about hospice. My husband was in a residential hospice for 2 1/2 weeks, as I was not strong enough to care for him at home even if we had the space (we moved to a one bedroom in a retirement community over a year ago). Fortunately we had LTC and resources that covered the hospice room and board. Once the "dying process" started, identified by the mottled skin of the extremities, they gave him sublingual morphine, and he died about 3 days later. Although it was difficult watching him fade away, it was what he had requested in his health care directive. A DNR wasn't much help when the first doctor wanted to put in a feeding tube; I simply pointed out the request not to have artificial food or liquid in his health care directive and changed to a more supportive physician. It's been three months now, and although I know I did what both of us wanted, it was the most difficult thing I have ever done.

Arleeda

 
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Old 10-30-2013, 09:32 AM   #11
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Unhappy Re: How long can mom go on like this? Ending?

Thank you all.

New stage. Now she doesn't sit up at all. Just lays on the couch, sleeps, a mouse size bit of food, and drinks a little through a straw (while laying down).

Sometimes when I call, she can talk for a few minutes. But can't really follow a conversation too well. I just ask simple questions, and she does answer in short sentences.

My dad (who is confused himself) who is changing diapers all day doesn't undertstand how someone who doesn't eat or drink can have such messy diapers??

I will have to ask my sister if mom has mottled skin, as I am 1200 miles away.

Barb

 
Old 10-30-2013, 12:45 PM   #12
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Re: How long can mom go on like this? Ending?

I would strongly recommend that you get in touch with Hospice. Her doctor can send a referral, Hospice will do an assessment, and if accepted they will provide so much in the way of supplies and care for your Mom. They can answer any questions, give you a better idea of what is going on with Mom, and give the family support as well. They can supply a hospital bed to replace her being on the couch, incontinent supplies, as well as doctor's, nurses, and care givers. They will also provide much of her medication. They are amazing at giving comfort care. Dad is probably struggling both physically and emotionally. He may balk in the moment but then welcome the additional help. May balk at Hospice because they feel it is giving up and death is intimate. In reality it is giving our loved ones the best care possible. Please consider talking to your sister about this recommendation

Love, deb

 
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Old 10-30-2013, 12:52 PM   #13
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Re: How long can mom go on like this? Ending?

Thank you so much. I will tell my sister that as she is the one who is there.

barb

 
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Old 10-30-2013, 01:40 PM   #14
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Re: How long can mom go on like this? Ending?

Hello Viking...I'm sorry for your family. If your sister is "the one who is there", she too needs support, as you realize. It's BEYOND difficult to shoulder the responsibility of sick and dying parents...even more so if you have to SEE them suffer. I agree with previous posts that your dad needs help to help your mom, whether it be hospice, etc. His efforts to care for her can quickly deplete his own faculties. I'm here if you need to talk. I KNOW your pain and your parent's suffering. I am heartbroken for all of you.

 
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Old 10-30-2013, 06:18 PM   #15
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Re: How long can mom go on like this? Ending?

Quote:
Originally Posted by Viking64 View Post
Mom age 81 has Dementia and Parksinsons (Parkinsons at least 10 years, Dementia at least the last 3 years). Her mother lived years with severe dementia until she passed last year at 101 years. Even her grandmother had severe dementia.

Mom Anyway, she has lost 15 pounds now in 3 weeks. (she weighed about 160 pounds.) She is only taking a small amount of food a day. One bite of this or one bite of that, and says she is full.

She doesn't get off the couch at all in the last 2 weeks, (only got up to pee before) and now leaves my father to change her diaper. (she is delusional too and says SHE takes care of my father and not the other way around).

Liquids have always been a problem for her, her whole life. So, she has been dehydrated a two times in the last month.

Oh, and she is giving up taking her daily medications, and sleeps a lot, can talk in sentences every now and then.

She called her sister two nights ago and said she was soooo happy, and everything was sooooo beautiful, almost like being in Heaven.

She has always just been "waiting" around to die since my brother died in 1991.

This is pure agony. There no easy way to lose someone in your life, but this is pure torture.

Can anyone help with general timeframe here? Now that she is losing 5 pounds a week, and barely eating and drinking, is her passing more likey weeks away, or still months away? I wish this was over and she was at peace.
Do your family a BIG favor and contact a hospice agency. They will take over and make your mother comfortable, give your father and other family members some strategies on how to cope with this event.

 
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