Taking husband off medicine. Am I wrong for this?

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.

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.

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.

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.

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.

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 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.

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.

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!

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.