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3 yrs. ago Neurologist referred hubby to Cleveland Clinic,(CC) possible dementia. He was tested, had "no Alz nor dementia and referred to a pulmonologist. More tests, four re: sleep apnea ( COPD suspected) which he could not take any no matter mask size because closterphobic. Hubby quit smoking almost 30 yrs. ago.
Pulmonologist " thinks" hubby has COPD & prescribed Anoro inhaler & oxygen therapy. LO has been on oxygen since. Memory loss has become worse the last few months. Pulmonologist "perhaps he should go back to Cleveland Clinic." Jan. 2020. I called & found home health care agency to help me. Oct. 2020 I took it upon myself to call CC & make appt., 1st available 1/5/2021. Found out that pulmonologist had sent referral in Jan/2020 & never let me know! CC called 3 times & couldn't leave a message? The phone # they had was the right one however I never got any calls from them. All med. records from pulmonologist & primary dr. were faxed to CC b4 appt. I was shown report of last brain scan taken Fall of 2020. Conclusion," no abnormalities, nothing to compare it to." ?? LO had brain scan in 2017! That report stated early dementia etc. Dr. at CC showed me the image of brain scan. "Shows 2 small strokes & a larger one, LO is in between assisted living or home health care."! I was so thrown off I didn't ask which faxed records included this, date of scan etc. I don't want hubby in assisted living until God himself leads me to it. I don't quote scripture or preach to anyone, my faith and only Gods Grace has gotten me this far. btw I'm 78 & hubby 79 yrs old. Have been so tired & stressed lately over incompetence with dr staffs . ie; forgot to fax, didn't get ur messages etc. blaming COVID situation for anything that is messed up. New year 2021.
CC dr. sent referal to a different home health care agency, a nurse and someone else will come by tomorrow to evaluate etc. Good. Dr., 1st one honest enough to explain to my husband what his condition is even tho he won't remember. Not so good? Also prescribed Donepezil 5mg. tabs & explained possible (?) side effects. LO told doc " I don't want any more pills ." He's on heart meds, heart stent in place after near heart attack about 12 yrs. ago w/ no problems until 2017 stents to repair annurisms in lower abdominal aorta & right lower extremity. All good since. My main reason for the following question:
Has/ does anyone have any experience with someone taking Donepezil? Hubby doesn't want to take it, I have to make a decision whether to just give it to him & risk any severe reactions. Guilt is not a good thing to feel but I'm trying to decide whether to give LO something that will slow down the advance of dementia or deal with more bladder & bowel movement issues then he already has. Praying hard for divine intervention! Any words of encouragement, suggestions or experienced knowledge of this drug will be greatly appreciated. Thank you for time taken out of your life to read this.
God bless you all. We all are in many things together.
Nanabinx

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My wife was on donepezil and memantine for a short time and seemed to have no effects on her AD. The two are often prescribed together. Others may have seen some cognitive improvement. Make sure you understand any medication interaction with other meds he may be taking. Also, as the disease progresses, these drugs become ineffective and can be discontinued. If someone is on hospice there is no need for these meds.
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97yroldmom Jan 2021
I thought I would just let your comment pass because I’m not as sure of my opinion as you seem to be of yours but Then thought I should respond in case others are in the same situation and need a bit more info on why I continue with the meds in this case. No disrespect to your opinion intended.
My DH Aunt, 94, with dementia, has taken the two meds for several years.
I’ve asked in the past if she should stop them. It was agreed that she had done very well on them and should continue. Recently when she transferred from home health to hospice in order to get more baths due to her incontinence, the hospice doctor, as well as her geriatrician still thought she should continue with these meds. Hospice actually provides them now as dementia is why she is on hospice.
It is, of course, very difficult to measure the success of this Med and many other meds, but she has not declined as fast as was first expected so I suppose some of the credit is being given to the meds.
Medicine in general is not an exact science. A person on hospice is still in need of the best life possible. That’s what I try to provide for my aunt so although I’m not a medical doctor, I do take the advice of a few and this is what they recommend for now. Not all patients respond the same to all medications. I’m sorry it didn’t help your wife.
I don’t think the OP mentioned her LO as being on hospice so it may be irrelevant in this situation. Cleveland Clinic is a respected hospital. I would give it a try if I were the OP. It might help.
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Dear "Nanabinx,"

My mom was diagnosed with Alzheimer's related dementia back in 2014 when she was 89 by a reputable Neurologist. He put her on Donepezil because she was in the early stages of her diagnosis.

She will be 96 next month but, was taken off of it when she went on hospice. I have heard many times that it doesn't do much if anything for people who are in more advanced stages. It was just given to her at the onset to help slow it down. Now that she is off hospice services at her ALF in the MC wing, the new doctor hasn't said she would be prescribing it again.

She had a heart stent in the mid-90's when all her arteries were blocked and an actual offshoot grew which prevented her from having a heart attack.

She didn't have any side effects from the Donepezil. Side effects are given for any and every medication as warnings and what to look for if we should have them. If we all thought each effect was going to happen, no one would ever take anything.

When hospice wanted to give her something to help her sleep so she wouldn't get up in the middle of the night and keep falling along with an anti-depressant, I was concerned. But I allowed them to be given and I kept a very close eye on her demeanor and behaviors to make sure they weren't giving her too much or she was showing signs of having side effects (we did research the medications before I agreed). If I had noticed something not right, I would have had them either not give her anything or find something else. We always have a voice and can change our minds if the situation warrants it.

I pray God would give you some clear direction as you move forward!
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I'm not a Dr, but it sounds like your husband might have vascular dementia. It's very common in folks who have had a stroke or strokes. It is also the most aggressive of all the dementias, so if he by chance gets diagnosed with that, do your research on it for sure, as you should with anything he's diagnosed with as being educated will help you be better prepared for the future.
My husband who had had a massive stroke in 1996, ended up developing vascular dementia probably late 2017, to early 2018. He however wasn't diagnosed until July of 2018, and his neurologist recommended that he go on Donepezil, which my husband did. My husband too was on many medications, mostly to keep his seizures under control. He took 10 mg. of Donepezil up until his 6 week dying process last year. He didn't have any negative side effects, and it honestly did seem to help with his memory some. Everyone is different, but it might just be worth giving it a try. Best wishes.
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Good results with aricept and Namenda for my DH aunt. Seems to help and she is on hospice and still takes it.
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Thank you! S,O,F, & N. Your input and experiences shared were very helpful and encouraging for me. Yes, my husband was diagnosed w/ vascular dementia 3 yrs. ago. Now as I mentioned, per dr. at Cleveland Clinic, he's in between assisted living or home health care. I chose home health because I want him home as long as possible. I think that if he were to go to assisted living away from our home he would get worse sooner. So I'm on a new schedule, will have more help and enjoy the good days more. One day at a time.
Again my sincerest thank yous. God bless and keep you all safe. Have a blessed weekend. 🤓
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"Nanabinx,"

Another thing you could look at regarding the Donepezil is go to the Mayo Clinic's website (www.mayoclinic.org). Under the "Health Information" tab, scroll down to "Drugs and Supplements A-Z" and click on that category which will take you to the alphabet. Click on "D" and scroll all the way down and you can read about the Donepezil for some information from a reputable source.

Good luck!
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I've been in elder homecare for almost 25 years. I would say that most of my clients, probably 95 percent of my clients with dementia were on Donepezil. It did not help them all. I saw no improvement in any of them on that drug. In fact, the ones with incontinence got worse on it because it often causes upset stomach and diarrhea. It also increased their fatigue and made them more weak and tired than they were before going on it.
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