My mom who is in a NH has declined very quickly in the past week. She is forgetting how to swallow. I have requested that they evaluate her for hospice. There will be no feeding tubes or other artificial life-prolonging treatments. Just pain medications since she seems to always be in pain. Even when sleeping according to the nurses.

I have three siblings and we all are in agreement so that will not be a problem. But I am the only one in the state so I am sort of alone in this.

Anyway, can anyone who has been through this tell me a time-line? I know everyone is different and if she continues to take some nutrition there is no way to know how long this can last. Just wondering about others experiences.

I don't have an answer to your question. But my father had cancer in his mouth and eventually was not able to swallow, so morphine was given by patch.
You may request that they use patches instead of making her try to swallow pills.

My Mom is barely drinking and eating one ice pop a day. I asked Hospice yesterday how long she thinks she has. She told me that since she is still taking in some liquids, even though it is not a lot, she can hang on for a little while. But she told me when she completely stops taking any liquids in, then she will have 2 weeks. They assure me her body adapts to this and it will not be a painful death. Do you have Hospice?

Dear daughter,

My MIL lasted 5 days after taking in very little food or liquid. It can go as long as 2 weeks, but I've heard some hang on for longer.

Best wishes from another oldest daughter!

MOD

I've been thinking of you off and on today --- I identify with what you are feeling re. your mom - and hoping I could have helped you more yesterday.

I came across 2 websites that could give you guidelines to symptoms or signs when the inevitable is coming.

Hope they will be of help for you.

http://endoflifecare.tripod.com/Caregiving/id89.html
http://www.mayoclinic.com/health/cancer/CA00048

Also if you search via the internet - there are more.

Hope to see you in the chatroom --
My prayers are with you and your family

Catherine Ann

Thanks to everyone who responded. I had asked about hospice on Wednesday but the social worker said they had patients that were a lot worse and hospice would not take them.

I called her again today and she had seen my mom's chart. She could not believe how much she had declined in a week. She agreed to contact the doctor. If he will refer her to hospice then they will come and do the assessment.

Also they have contacted a speech therapist about the swallowing.

I was there this evening and she was able to drink some orange juice so maybe it comes and goes but I am sure it will get worse.

This must be very hard and painful for you to go through. My mom is not there yet, but I lost a dear friend of 25years last april.
I was there through all, the nurses talked alot abou the dyig process. Her first step was the refusal food, and minimal liquids.
My prayers go out to you and other family as you are with your mom on this path.
Take care and I hope that you have some supportive people to care for you.

You do not need a doctor's referral to get an assessment for Hospice. You can call a Hospice agency and tell them about your mom. Often they can give you a good idea as to whether she would qualify. Some will even come out and see her for that assessment.

Where you need the doctor is to write the order for Hospice services. Some will do it just by requesting it. In Mom's case, her doc wanted to see her because he had not seen her in several months and he didn't think she was at that stage. But she had declined rapidly, and I had a signed Hospice order in my hand before he even examined her. Watching what we had to go through to get her there, getting vitals, etc. was enough. She's been on Hospice for over a year now, as that rapid decline leveled out and became much more gradual. But they have recertified her at every period, and now we really are at the end of her life, I believe. She has refused solid (pureed) foods for 7 weeks. She will drink a small quantity of Boost and we sometimes must stroke her throat to help her get it down. We have discontinued most of her meds and switched the others to elixirs or patches.

I hope Hospice will help you. They have been a godsend to us. However, if the first agency doesn't work out (and some of our community members have had that experience), try another one. It's too competitive a field to put up with substandard care.

Keep us posted!

Thanks Carolina but I had already talked to the hospice and they said they would not do an assessment unless the doctor referred her. I guess each one is different. There are 5 that come into the NH and I have no experience with any so I just chose the largest. One reson is they have more inpatient beds and I think that might be a better place than the NH at the end.

However she seems much better today so it may be too soon to do anything at this time. They said she ate breakfast and lunch but she could not figure out how to eat a dish of ice cream this afternoon when I was there. But she was awake and yesterday we could hardly get her to wake up.

Glad she is feeling better. Hopefully that was just an interlude for her, not a permanent step-down.

Have you discussed Hospice with the social workers there at the NH? They can also give you a good idea if it is something to pursue sooner rather than later. You can also receive Hospice care in the NH she is already in.

I would continue investigating Hospice agencies even if it turns out to be premature. As you have seen, the downturn which requires it can happen at any moment. That's disturbing enough for you -- scrambling to find appropriate care makes it harder. Figure out now what you would like to do when that day comes. You may still have to go to Plan B, but you had a Plan A to start with. There is wide variance in Hospice agencies and their services. They have been a godsend to us, but others on the boards have had totally different experiences.

I compare it to high school seniors. They know they can't stay where they are forever and it would be ill-advised to not make the "where next?" decision until the day after graduation. Even though it is not time to buy dorm supplies or report to boot camp just yet, they know a while in advance where they are going next. Knowing where your LO will probably go next is one of the ways we care for them.

I will be meeting with a woman from Hospice this afternoon. We will see how that goes. My mom is doing better with eating but she is still in a lot of pain so I am hoping Hospice can help with that.

I will be looking at Hospice to just provide care in the NH unless the NH moves her to the main nursing home area. There are 60 patients there and it is a zoo. If the noise and activity bother her I will see about inpatient hospice. I am not sure if that is financially a possibility since I do not know what they charge. She is currently private pay at the NH.

So I have a lot to learn about this aspect and am not realizing I should have done this research earlier. I had no idea there would be 5 different ones to chose from.

My mother in law was unable to swallow this past July, we had a speech therapist come and do therapy but medicare will only pay for so many visits, she was able to swallow again but she also kept declining cognitively, she also has COPD and congestive heart failure, her feet and legs were so swollen with edema that she also got venuous ulcers on her legs. The nurse at the AL facility came to me and told me it was time for hospice, she was enrolled about 3 hours later and on morphine 45 minutes after that. We have since moved her to the memory care unit and we didn't do that a moment too soon. She is now unable to swallow and sleeps about 23 out of every 24 hours, this decline has been so rapid we can hardly keep up, she too had anxiety and hallucinations and paranoia for the past 2 months but now she just sleeps, she is on long acting morphine but we don't know how much longer she will be able to swallow the pill, she also gets a liquid pain reliever in between, this has to be the most depressing thing I have ever witnessed. She knew me up until a week ago, I am the only caregiver as my sister in law lives out of state, we just keep hanging in there and praying that she won't have to be with us much longer. She only moved into the AL last December so in just 10 months she has gone from independent living to end stage.

I am sorry about the swallowing. This is what was my own father's demise. But if she's still able to swallow some, you can mix her fluid with Thick-It (you can buy this in a medical supply--Hospice should be able to get it for you).