What next
- Thread starter Rosebush
- Start date
Hi Rosebush, it never seems to get any better that's for sure. Sadly, Talking Point helps as at least if we feel abandoned and at a loss of what to do here we can be amongst friends who truly understand. Sending a big hug xxxx
Isn't there anything you could do to make the situation a bit more bearable?
I often feel I can only wait for things to happen.
It is exasperating.
As you say, medication doesn't help much. My husband is on Ebixa ( memantine), but his dementia is getting worse...and I do not know what to expect
Hi, rosebush. My Oh was a nightmare to live with, too. Can you say more? No pressure. Here for you.
Hi, kindred, where do I start I could write a book he has tantrums just like a 2year old and because he is not allowed out alone I have to keep the doors and Windows locked so then he bangs on the door and stamps his feet! So the dog hides and I try to ignore him. so much to say but OH is pacing up and down which usually means he wants to go on yet another dog walk.will speak again soon.Thanks for your replyx
Thank you, beginning to get small part of the picture! That is nightmarish. My OH would walk up and down outside my bedroom door all night, stopping only to bang on it. Yes, please, speak again soon. You wouldn't imagine we would ever have to cope with stuff like this, would you? Thank you.
Hi @Rosebush and @margherita, I have just noticed your comments about the meds not helping much. Unfortunately we may never know the reality of that. My wife is on both Donepezil and Memantine but continues to slowly deteriorate. The natural reaction is to think that the pills don't work. However, we will never know for sure unless the drug is stopped.
I recently read a brief case history relating to a PWD who was on the original UK trial for Donepezil. The people on the trial were a mix of those on the drug and those on a placebo. The participants were monitored and after some months it was seen that this PWD was continuing to deteriorate significantly. In view of this it was decided that this PWD must be one of those on a placebo so the pills were stopped. The persons abilities dropped through the floor so the trial managers were contacted and it turned out he had been on the Donepezil. He was put back on the drug and rallied somewhat, but not to the level he had been at when the drug was first stopped. The deterioration of an aggressive form of Alzheimer's had, indeed, been slowed by the drug and stopping the drug had caused damage that was never recouped.
What next is a question I often ask too. Just 1-2 weeks ago my wife woke me in the early hours to ask me who I was. I actually had to introduce myself with name and relationship before she would drop the subject.
I met my wife some 15 years ago and when she was diagnosed the risk factors for the disease noted in the Consultant's report related to her life before she met me, yet 3 days ago I was accused of causing her Alzheimer's.
It's tough, but then I've never been told it was going to be easy.
I recently read a brief case history relating to a PWD who was on the original UK trial for Donepezil. The people on the trial were a mix of those on the drug and those on a placebo. The participants were monitored and after some months it was seen that this PWD was continuing to deteriorate significantly. In view of this it was decided that this PWD must be one of those on a placebo so the pills were stopped. The persons abilities dropped through the floor so the trial managers were contacted and it turned out he had been on the Donepezil. He was put back on the drug and rallied somewhat, but not to the level he had been at when the drug was first stopped. The deterioration of an aggressive form of Alzheimer's had, indeed, been slowed by the drug and stopping the drug had caused damage that was never recouped.
What next is a question I often ask too. Just 1-2 weeks ago my wife woke me in the early hours to ask me who I was. I actually had to introduce myself with name and relationship before she would drop the subject.
I met my wife some 15 years ago and when she was diagnosed the risk factors for the disease noted in the Consultant's report related to her life before she met me, yet 3 days ago I was accused of causing her Alzheimer's.It's tough, but then I've never been told it was going to be easy.
Yes, what next always in our minds. What does strike me is how bizarre, how just surreal a lot of our experiences are with PWD. The things we have to adapt to, having if you like, been conditioned to be reasonable human beings who expect logic and appropriate behaviour. It is all quite primitive sometimes. Thank you so much for posting.Hi @Rosebush and @margherita, I have just noticed your comments about the meds not helping much. Unfortunately we may never know the reality of that. My wife is on both Donepezil and Memantine but continues to slowly deteriorate. The natural reaction is to think that the pills don't work. However, we will never know for sure unless the drug is stopped.
I recently read a brief case history relating to a PWD who was on the original UK trial for Donepezil. The people on the trial were a mix of those on the drug and those on a placebo. The participants were monitored and after some months it was seen that this PWD was continuing to deteriorate significantly. In view of this it was decided that this PWD must be one of those on a placebo so the pills were stopped. The persons abilities dropped through the floor so the trial managers were contacted and it turned out he had been on the Donepezil. He was put back on the drug and rallied somewhat, but not to the level he had been at when the drug was first stopped. The deterioration of an aggressive form of Alzheimer's had, indeed, been slowed by the drug and stopping the drug had caused damage that was never recouped.
What next is a question I often ask too. Just 1-2 weeks ago my wife woke me in the early hours to ask me who I was. I actually had to introduce myself with name and relationship before she would drop the subject.
It's tough, but then I've never been told it was going to be easy.
Hi everybody, thanks for all of your replies OH has had a couple of better days only a few tantrums! perhaps the calm before the storm. Tomorrow we are off to the doctors I have made an appointment for myself and an appointment for him but he thinks it is just for me otherwise I don't think he would go, hopefully I can get his medication sorted, wish me luck
Hope you got sorted @Rosebush it's certainly not easy is it. We have to be so sly to get them places but we have no choice. Xx
Hi, eveybody been to the hospital today for an x-ray on my leg OH was ok even though we had to get 2 buses, until he wasn't allowed to go in with me I explained the problem and a nurse kept him occupied he was ok until e went to get the bus only to have just missed it and had to wait another 35 minutes moan moan moan all the way home!, well it's time for another dog walk who cares about my leg anyway.x
Rosebush, can you say what the problem with your leg is? I am sorry. This sounds a bit of an ordeal, and very hot day as well. Well done for getting through it.
Hi, kindred about 3 months ago I walked into the corner of the oven door I left it open to warm the kitchen up as it was very cold even with the heating on, anyway it bled and I had a big bruise but it healed and I thought no more about it, then it started to ache now it aches all of the time and every now and then I get sharp stabbing pains last night it kept waking me up!. I have to go back to the doctors next week for the results Thank you for askingx
Sweetheart, all sympathy. That sounds rough. Yes, please go to doctor. Just a small thing, before OH went into nursing home, on the few occasions I had to see the doctor, I took to the receptionist a note which said
I am sole carer for a man with severe dementia who is on his own in our house right now. Please could I be seen quickly.
The doctors' practice always let me go straight through at first opportunity. Perhaps I should make this widely known?
Hi, everybody, leg still aching OH has forgotten going to the hospital for the x-ray and had insisted going on 3 fairly long dog walks in the rain! Ouch and also had a tantrum when he couldn't unlock the car with his pen. Hope all of you have had a better dayx
Hi,everybody, well today has been the worst ever! OH decided he was going to go out but I wouldn't give him the key I could see the rage in his eyes as he ran across the room and I really thought he was going to strangle me I managed to get my phone and before I knew it I'd dialed999, the police stayed for over an hour calming OH down and also phoned for an ambulance to get him checked over. So first thing Monday I am making a doctors appointment as the police said his dementia is really quite advanced and also to contact the social services to see about respite care, the ambulance man says I should be entitled to 6 weeks care.OH is sat watching the tv at the moment as if nothing had happened can't say I'm looking forward to tomorrow.Can't say I'm happy about calling the police but it's made me realise I can't ignore it any longer. Hope you have all had a better day.x
Thank goodness you called the police. It was the only reasonable thing you could do.
I am so scared of physical violence.
How do you feel now?
Are you afraid of him?
I am so scared of physical violence.
How do you feel now?
Are you afraid of him?
Oh my dear, I am sorry. The ambulance men tell me this kind of thing happens all the time, they are called to help in situations like this. One of them said to me, you are not alone, there are hundreds like you just in this area ...I am so glad you called the police. Horrible though it is, this could be a turning point for better things.
