Taking husband off medicine. Am I wrong for this?

You are not wrong for wanting to take your husband off his medication for Alzheimer's, as like you said all they do at best is slow the process down, and even then they don't help after a while, and can have horrible side effects. But that being said, you should always discuss stopping any medications with his doctor first.
As you already know there is no cure or magic pill for Alzheimer's, so you do what you think is best for your husband.
You may also want to look into seeing if you have an Adult Day Care Center in your area, for your husband to attend. They do a great job with their clientele in keeping them occupied and fed throughout the day, and you can take your husband there up to 5 days a week if you want to. And of course it then gives you a much needed break to get done what you need to without having to worry about your husband, even if that's just taking a nap.
Best wishes and God bless you for taking such good care of your husband.

From your profile:
Just starting the journey with my husband who has Parkinson's and Alhzimer's. I already am not doing well and this just started. My adult children want me to put him in memory care but out of guilt I just cannot.

I think your 'guilt' is misguided, personally, on both fronts: taking your husband off of medication AND placing him in Memory Care. Alzheimer's medication doesn't do much of anything to begin with, so discontinuing it shouldn't make a huge difference. You say you're already not doing well yet you won't place him in MC due to guilt. He's lonely and would get plenty of social interaction in Memory Care, meals and activities, plus you could go visit him DAILY if you'd like. Where is the downside to that, and where is the guilt coming from?

Dementia/ALZ and a disease like Parkinson's is a lose-lose for all concerned. You have to make decisions that will benefit both of you and realize that you're taking the lesser of the evils in doing so. There's no 'cure', there's no way to lessen YOUR load on this path, and there's TWO people involved in this nightmare: your husband AND you. If you get sick or die of stress, God forbid, then what? Then he gets placed immediately. I think you should reconsider your stance on placement here, and remember that your life matters too. Your children are right.

As far as taking him off of medicine, as far as I'm concerned, anything that extends an elder's life IN THIS CONDITION is cruel. My mother has advanced dementia and lives in Memory Care AL. I begged hospice to accept her in November and she was turned down. Off to the hospital she went AGAIN in early December for yet another stressful stint in the ER for chest pains which they virtually ignored. 5 hours later, she was sent back to the Memory Care after being given a BLOOD TEST to determine kidney function! By the grace of God, hospice accepted her in late December so these horrible hospital runs are over with now. My only goal is to keep her comfortable; not to drag her to hospitals or force medications into her to extend her life when it's nothing but misery ANYWAY. Her sundowning is absolutely horrible; I sympathize with you 100% on that. Ativan has helped her but she still gets terribly angry that she can't find her mother & father who have been dead since 1985 and 1945 respectively. There is no quality of life with the dementias, and I pray God takes her Home every single day, not that her life be extended with medications!

Please don't feel sick putting your thoughts into writing. It's cathartic to come here and hear from others going through what you are. Together we talk, learn, listen and heal.

Wishing you the best of luck coming up with a plan that works for YOU. Sending you a hug & a prayer for peace.

There are ways to help the Sundowning:

- install very bright lights (daylight spectrum) and turn them on before the daylight starts to fade and leave them on until you think the Sundowning has passed.

- distract him at the time he usually starts: play a card or board game with him, start him on a "task" (like sorting a large pile of nuts and bolts and then attaching them if he is physically able), or folding a large stack of kitchen towels, sorting colorful poker chips, sorting and pairing a large basket of socks. You purchase these things specifically for his activity.

- if he watches news on tv or shows/movies that have distressing content, try eliminating these to see if it helps him. My aunt can't watch anything remotely negative (and the bar is lower than you think) Just Disney and Pixar animated movies that have a lot of physical humor with uncomplicated plots. Also we put on the closed captioning subtitles and she reads all of it, it apparently helps her.

Everything about dementia is hard and you are doing your best and that's all you can do. Caregiving needs to work for both parties or it isn't working. You are not a horrible person for feeling the real and heavy burden of this sucky disease. May you gain wisdom, clarity and peace in your heart as you make decisions.

There is no medicine I know of that "slows the process". No medication that I know of has been proven effective against any dementia. Even the newest ENORMOUSLY expensive medication approved by the FDA was admitted to have no proof in testing and in fact caused brain bleeds so severe in some studies that the studies were stopped; the FDA "claims" they "had to " approve it because the public demanded they do so. With doctors getting 6% of every prescription for it, it is a boon for the MDs, but I doubt very good for the patients at all.
IMHO there is no reason to keep him on the Alzheimer's medications. You will find that opinions vary, and you should be guided by your HONEST doctor in this, as well. A Forum isn't the place to decide what medications anyone can be on.
Do your research and I think you will find there is enough support for your withdrawing this. In the end it is a personal decision. You may wish to discuss palliative care with your husbands MD at this point and make clear as his health care proxy that you see no reason in prolonging this miserable quality of life, which is more torture than it is living.
I am so very sorry. This must be a torment for you. You will have as many opinions as there are people and in the end only you, with the guidance of MDs and research, can make this decision.

As we have learned from our friend Alva, on this forum, guilt is for when we’ve done something horrible to someone.

Making a decision to get a person the care that they NEED, doesn’t qualify for the guilt label.

I just came home from my mother’s MC. She was about to have lunch, which was designed by a chef.

She was surrounded by other ladies her age. She’s no longer lonesome.

There are activities to keep her busy.

The caregivers there are lovely, and devoted to this work.

If she needs a doctor’s care, the doc comes to HER.

If she needs a change in her medication, it is usually there in 12 hours, at the latest.

I could go on and on.

Let’s take the shame out of making decisions for the NECESSARY care of our loved ones.

I took my mom off of the Alzheimer's medications. She was experiencing side effects which caused diarrhea and pain. She is doing so much better physically...no more pain except the occasional complaints.

As mentioned, talk to the doctor first but don't feel guilty about wanting to not slow the disease down. My goal is to keep her as happy and healthy as possible with no horrible side effects.

I wouldn't advise that you stop his medicines without the doctor's approval. The only thing I can say is that the medicines prescribed for Alzheimer's like Aricept and Namenda do not cure the disease and don't even slow it down. They are supposed to improve the memory in the early stages of any type of dementia. In latter stages they seem useless, and because the multiple sude effects, they can make the patients uncomfortable. Alzheimer's is incurable and progressive. Current medicines for Alzheimer's are like Tylenol to relieve the headache caused by a brain tumor.

Out of guilt you say you can't place your husband in MC. Is it because you feel obligated to care for him at home? Do you worry he may not get the proper care he needs? Do you feel your marriage vows require you to care for him at home? These are all legitimate feelings that we, especially spouses, experience. You say you're already not doing well. Might your children also have your wellbeing in mind by suggesting MC? Your children can see what the effects of caring for your husband are having on you. I, too, had to make that decision. It's difficult, complicated and emotional. And your task will only get harder. Following your children's advice IS caring for your husband.

I am in total agreement and support of you stopping his ALZ med. My mom just got a dementia diagnosis and we are NOT going to do the meds. Since they're basically useless anyhow. Why ingest extra meds when they are not necessary? I am in favor of letting nature take its course. Especially as things get more advanced!

The loneliness is an issue. My mom is lonely too but can't do anything about it. I mentioned AL to her and she was mad and hurt for days. I am only one person, just like you. It is NOT enough socialization, for anyone. Especially when someone is basically homebound. I guess I'm tabling the idea of AL with my mom for now. Her symptoms are in the mild range, pushing towards moderate I'd say. When she pushes into new areas of decline, her ability to weigh in on moving into care will be taken away.

It's such a sad thing.

Aricept made my 97 year old dad very agitated and paranoid after 2 doses. He takes 50 mg of zoloft in a.m. and .25 mg of risperidone at night. He is so much better with this combination.

Adult day health programs for persons with dementia are often very good quality. If he can go 3 days/week, that is enough for him to benefit from programming and to remember the place when he returns after a day or two away. This gives you the chance to have some time by yourself - so you can focus on your own needs. Anything from a long nap to a medical checkup for you to checking out local ALF/memory care facilities. This step helps each of you start to separate from each other physically. When a family member moves to a facility of any kind, you are still very involved in their care. But you are not the one to deal with sundowning, agitation, wandering, or incontinence. I am sorry you are both struggling with this situation...seeing your partner declining with dementia is heartbreaking. Take good care.

My suggestion is in my story: my mom got early-onset Alzheimer’s at 48 & finally diagnosed at 50 (in the 90’s when there weren’t any meds out yet for this disease), exactly when my dad retired. Since I’m clinical, and my dad made the decision to keep her home, I automatically said yes to helping anyway I could. She declined to the anger phase super fast, then Aricept/Namenda was given to her as soon as it came on the market, but a little too late. Didn’t do a dang thing for her but brutally slow it down so that she was stuck in that phase for what seemed like forever. Against my advice, Dad would no way let her go to a MC. So it got hard - real hard. And I lived 2.5 hrs away & couldn’t be there everyday to assist. He really thought he was doing the right thing but was a horrible upcoming 20 (YES, 20!!!) years! She went bed-bound soon and they inserted a pegtube as she forgot how to swallow. In her 60s, the bedsores started, & it was like trying to put out a fire. To make it worse, against mine & her docs advise, Dad wouldn’t take her off the meds, making her suffer horribly all those years. So many other issues happened after that (a pretty long list), & at home and on hospice for several years, God took her home at 72. Mom had no idea where she was all those years, and MC is exactly where she should have been. I had to use my 2 weeks vacation every year to give my dad some respite care. Hard on my marriage & my job, my dad expected all this from me and anyone who could assist him. He couldn’t do this alone & wouldn’t let an aide come in the house to help. I don’t for one second regret helping him & my mom, but I can’t tell you how physically and mentally demanding that was & what toll it took on my dad & myself.

That all being said, what happens when your husband gets to the point where he gets physical with you, or forgets how to walk, etc.? Can you lift him? You will have caregivers in and out all day (can you afford that)? Tons to think about. You have to sleep sometime. I’m a board-certified geriatric care manager now, all due to what I went through. Either way, there’s never a clear, easy answer. Please, please let your children help you make decisions. This needs to be a family decision, from personal experience. I wish you all the best!

I'm so sorry for you and your family, we share the same heartache. My husband was diagnosed with AD last year and it is definitely a journey full of unexpected challenges. And since the disease affects each person differently, it then in turn affects you, as his caregiver, just as much.
You need to find balance in your life, while trying to make those difficult decisions as to when it is time to 'let go'. We say good-bye a thousand times don't we...the moments of clarity are so brief, and you see that person you married is still in there. But don't confuse your love for him with guilt. You and your family will come to the best decision for your circumstances...and you'll do it out of love.

My 95 yo mother has moderate dementia and I don't have her on any of the drugs to slow it down. I do give her lion's mane mushroom tincture in her morning tea. Google "lions mane mushroom for dementia and alzheimers" for more research and to read about the studies that have been done.

If it's not helping, of course you're not wrong to question whether there's any point to his taking this medicine; only stop it in consultation with his doctors. They won't try to change your mind unless they have very good reasons to think differently WHICH by the way they would also have to explain convincingly. The decision is yours (you have MPOA, yes?), but it's always best to act on appropriate advice.

There is no stopping Alzheimers and you should NOT feel guilty for stopping Alzheimer's treatment. Our family made a similar choice. Focus on his quality of life. A good neurologist can help you find the right medications/therapies that make the future more bearable for him.

Sundowners is real – and hard to deal with. Turn the lights on before the sun sets and keep them on until bedtime. Engage him in conversation or activities during this time, a puzzle, lighthearted TV program, or ask him to help fold laundry. Keep him company during this time of day. Agitation, delusional behavior and hallucinations are common for dementia patients. Agitation may result in angry outbursts or may even get physical. Hallucinations include seeing, hearing, tasting, or smelling that aren’t there (my Dad was certain he saw people walking around inside his home, for instance). Delusional behavior centers around irrational beliefs/behaviors (my Dad stood firmly on the belief that he’d had a huge fight with his cousin. Lots of details and anger every time he told the story. His story was consistent over several years. In reality, it never happened). Agitation can be triggered by her inability to find/use the correct word, frustration, or TV programs that contained violence, etc. Medication does help.

No, I don’t think you are wrong. I most likely would let nature take its course. You know him and love him. You will make right decision for him. ❤️

No. As a family of 5 kids, we made the unanimous decision to remove my mom (in the later stages of AD) from all her meds. I have never regretted it and it is in my medical directives to discontinue my meds should I develop AD.

What medication is it? There is none that I know of that slows progression.

No medication should be just stopped without a doctor to oversee the process.

Hi. I’m so sorry you are in such a position to have to make such a difficult decision. I’ve been there and still am….

my moms neurologist, psychiatrist, primary doctor…. All tried out various dementia medications which made her condition far worse. I was forced to call the doctor and tell him we need to discontinue the medications. (The medications were given at different times by different doctors. They weren’t given to my mom all at the same time).

Had my moms condition improved at all, or didn’t make her condition worse, I would have left her on the specific medication that was helping her. But because the medications she was given made her worse, they were discontinued.

in my opinion, slowing down the process is not a bad thing. I know my mom suffers how her brain works. This is a horrible disease and we try to make their lives as comfortable and tolerable as possible.

mom currently lives in an assisted living facility that really is not all that great (or good). We’re trying to get her into a memory care facility, hoping the very least, she will have people surrounding her that understand this horrible disease. It’s so hard to find a place without covid, with people who actually love the old people and their jobs.

all we can do is our best. What’s good for one family is not always good for the next.

I know when things get too complicated, I pray. I pray that I’ll make decisions that improve my moms well-being and keep her safe. I love her so much and I always question myself. But at the end of the day, I know, God & mom know I’m trying my best and I can sleep with a good conscience.

I do wish I could do more like I used to. But I’m disabled and my husband is awaiting a heart transplant. Prayer is truly what gets me through everything.

I wish you well and hope you can make a decision that is good for you both and that you can sit right with that ultimate decision.

With love……

He may be much worse without his meds and being off them doesn’t necessarily mean he will pass any sooner.

Did you two ever talk about end of life plans. Would he like for you to let him go?

We never entertained the idea of slowing down the progression. To us, it meant her slowly dying with little quality of life. Had they had medication to cure it, yes, sign me up! But to watch someone die in slow motion with no chance to heal was torture. You make the decision based on how you will be able to deal with it in the future.

Oh...gotta love the meds to "slow" the progression.
Yes my Husband was on one of them, another one added but that had problems so we went back to the "good old Aricept"
I thought about it for a long time after he stopped taking them. This was my train of thought.
Is it really working? How do I know? How fast would the progression have been if he was NOT on the medication? How fast will it be now that he is going off of it? Will I be able to tell a difference?
I have talked to people that say they noticed a difference when their loved one went off the medication and for that reason they went back on. But most people sorta have the same questions I had.
No matter all the questions though bottom line is that is is supposed to work to slow the progression early but apparently it does not do much for later stages of Alzheimer's.
Depending on the medication he may need to go off of it gradually so do not stop suddenly. Talk to the doctor or the pharmacist and see what they suggest.
If you notice a difference you can always inform the doctor that you want him to continue with the medication.
Talk to the doctor about the Sundowning as there are anti anxiety medications that can help. there are other things that you can try doing that might help.
Increase the lighting, use LED bulbs for a brighter light reducing shadows.
Close blinds or drapes so that looking out the window does not give a "mirror effect" that can confuse some in thinking there are people outside.
Keep him busy during the day so that he is more tired and more apt to sit later. Or give him a task to do that will help keep him occupied.
Lavender lotions or essential oils are said to be calming, a bit of hand lotion rubbed onto hands, arms and around the neck might help. (and that bit of a massage just might be enough to relax him)

Buddy2022: You should NEVER cease giving your LO medication without speaking to/consulting with the patient's physician. You can state your concerns about said medication not offering the results that you thought they would, but as you are not a medical doctor, the decision will rest in the hands of your wife's physician. Prayers and love sent.
Llamalover47

Edit: That will rest in the hands of your *husband's* physician.

I would not remove a medication without clearing it with doctor. Personally, I do not want nature to “take its course” with my husband. That could mean pain and terror. I want him to be as comfortable and pain free as possible. I do not want him to be frightened. Whatever meds he needs to get there, I want. I have found his doctors supportive of this palliative care.

It is hard to watch someone decline. There is not a cure, but there are ways to make the exit less horrific.

Please do not stop medications abruptly. Talk with his doctor about the symptoms you are seeing and the difficulties. Work together with your health care providers to make life better for you and him.

My brother was on some meds to slow Az, we saw little benefit. Dr agreed and took him off. He had the meds for sun downing/anxiety adjusted and was much calmer all the time.