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Hi. I’m freaking out because hospice wants to take my dad off of his memantine 10 mg twice a day and his donazepril 10 mg a night . I’ve read that people’s loved ones really change after they take them off of these medications and I’m really scared. I’m not ready to lose my dad. Can someone who has gone through this shed some light I’m so scared.

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I went through this with my grandpa, who I was taking care of, back in January. I was so so confused about why they wanted to stop these medications that he was taking everyday for such a long time. It took a little bit of time for me to come to terms with it. My grandpa was diagnosed with pancreatic cancer and came home on hospice. Pancreatic cancer was going to be what he died from. The conditions that the medications were treating were no longer as urgent and him taking those medications was not going
to prolong his life in anyway with what he currently had going on. It was so hard for me to understand this. But once I understood that I needed to make the best of the time we had and worry about treating his symptoms, I was able to be at peace with it.

He ended up passing away after being home on hospice for only 6 days. I won’t tell you that it’s going to be easy, because it’s not. It’s the hardest thing I have ever gone through and am still going through. The pain doesn’t ever go away, your world simply grows bigger around the pain, making it not seem as big, but it will always be there. Please take comfort in knowing that you are not alone in this. I’m so sorry for what will be to come for you, I hope you find peace and love with your father in the time he has left <3
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Each persons reaction to meds will be diff.
There is a correct way to decrease the meds and I would want to know exactly what they had in mind.
My DH Aunt was on both for years. We stopped the Namenda first, reducing the dosage over a few days. Not one ripple. Then we stopped the Aricept. I could tell no difference in the beginning. She seemed the same given it is hard to discern with dementia. I could really never tell that it helped in the first place but she wanted to take it when we first started it. Her geriatric primary thought it was helping her. She had much more experience than I and I deferred to her.
She is doing really well at the moment. Was it coming off the meds that made her better, I have no idea. We also increased her antidepressant and now she seems much better than she has in years. She has been off the memory meds for about a year I would say.
She has been on hospice for several years. The Aricept was causing aunts pulse to drop so that was an added benefit for her to stop it.
For what it is worth, the hospice never suggested she come off of any meds. It was my suggestion.
If your dad is on hospice because of dementia then hospice must pay for any drugs having to do with his dementia. That may have nothing to do with their suggestion. If I were you, I would do what makes you and dad most comfortable.

Neither drug is keeping your dad alive if that is what you meant by keeping him longer. Perhaps you meant keep him knowing you. I saw no difference in that.
But again, every patient is different. With dementia about the only thing we know for sure is that it will progress.
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Mariavictoria30 Jun 2023
Thank you so much for your reply 💛
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I found at the end of a person’s life that hospice does start reducing meds. They taper them off of certain medications.

You have to remember that hospice care is all about keeping your loved one comfortable.

Speak to your hospice nurse and ask her to give you the reason as to why they feel that your loved one no longer needs this medication.

Hospice nurses are very good at knowing what stage of decline your loved one is in. If they feel like the meds are no longer serving a sufficient purpose they will discontinue them.

Wishing you peace as you continue to care for your loved one.
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Mariavictoria30 Jun 2023
Thank you so much for replying 💛
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Both of these drugs are for cognitive enhancement. There comes a time when they no longer work. The Dementia progresses to the point the meds are not effective any more. Maybe they can wean him off to see what the effects, if any, are.

Your father is not on Hospice just because he has Dementia, he must have other health problems?
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Mariavictoria30 Jun 2023
Hi joann29! My dad has also had mini strokes and stroke strokes the most recent one he had was 9 or 10 months ago and he hasn’t been able to walk ever since despite many many rounds of physical and occupational therapy .
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Whoever is caring for your dad while he's under hospice care has the final say as to what medications they can take him off or not. And also put him on or not.
Both medications really aren't helping him anymore I'm sure, if they ever really did, but if the family feels better about keeping him on them you can tell them that you want him to stay on them.
My late husband was on donepezil for his vascular dementia and hospice wanted to take him off it, but at the time I didn't feel comfortable changing his medications, so I said no, and they kept him on it and they paid for it too(well technically Medicare did).
The only medication I allowed them to stop was his cholesterol medicine as that didn't make sense to me to continue.
So again, whether it's your mom, or you or someone else who is responsible for your dads care has the final say about what medications can be stopped or added. You just have to stand your ground with hospice.
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Mariavictoria30 Jun 2023
Hi Funkygrandma! It is me who is his medical power of attorney the nurse said that she would talk with the doctor and then get back to me about what he says about the medications but this is good to know because maybe I really do need to put my foot down
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The drugs you mention are not life prolonging ones like heart or blood pressure meds that might kill him were they to be withdrawn suddenly. Dementia drugs serve no useful purpose in slowing down the cognitive impairment process. If dad were to get agitated or start Sundowning, hospice would give him Ativan or some other calming med to relax him.

Understand the process of hospice and their goal to keep dad comfortable while allowing nature to take it's course. Know what you've signed up for, agree to the terms, or fire hospice and continue medical treatments for your dad who's reached the end of his life here on earth. There's no easy answer. Nobody's ready to lose their parent, but I was definitely ready to see both of mine have their suffering come to an end, dad w a brain tumor and mom w dementia and CHF. Hospice consulted w me before discontinuing any meds, same thing with oxygen. There comes a time when the body is shutting down and oxygen is doing nothing to stop that process. Yet we try to keep fixing something too far gone TO fix. That's when acceptance comes into play. It's important to arrive at a place where you accept that dad is getting ready to transition and find peace in your heart with that fact. Perfect peace awaits him but grief awaits us survivors, unfortunately.

Wishing you the best of luck with a difficult situation.
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Mariavictoria30 Jun 2023
Thank you so much for your reply 💛
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I know the change in meds is scary but Hospice care is comfort care. They will not allow Dad to be uncomfortable or agitated. They will switch the meds up if previous meds are no longer beneficial to him.

my Mom went in Hospice and was given two weeks to live. Two years later she was put in Palliative care. The med changes improved her quality of life.

It is so hard to understand the changes Hospice makes because it seems like they will accelerate death but that is not the goal, the goal is to keep them comfortable and to support you and the family.

hugs to you as you go through this with your Dad. Do take advantage of all they offer you as well. I miss the weekly calls etc.
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Your Dad is in hospice and that IS end of life care. You ARE losing your Dad so it is time to give Hospice your feelings about this loss. I am terribly sorry you are facing this now. I would look up these medications and be certain that stopping them "cold turkey" is not dangerous to do to the mentality of a patient. I would seek reassurance from the Hospice doctor that this will not happen. And finally, if you are the POA you can REFUSE to have these medications withdrawn. They have nothing to do with seeking a cure and likely are comfort measures at best.

Speak with Hospice. That is part of what they are there for. Again, I am so sorry you are facing this loss.
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