I really must try and remember that quote and also stop feeling sorry for myself.
Husband recently diagnosed with dementia
- Thread starter jannie19
- Start date
I really must try and remember that quote and also stop feeling sorry for myself.
Make sure you dont keep those feeling permanently buries, though. You need to be able to release them somewhere safe or you will either explode or the feelings will fester and turn into depression. Do you have someone you can talk to? You can always have a good rant on here.
I do speak to my sister on the phone a couple of times a week, and she is sympathetic. But as has been said on here, unless you've been there you don't really know what it's like. So I'm thankful I've found this forum.
Such a lovely day to feel down, alone and lonely. Being responsible for all decisions is so wearing. So many times I turn to make a quick comment or tell a piece of news and decide I can't face the long explanation needed or face the blank look of disinterest. We often sit in silence as well. Perhaps pwd prefer this rather than the muddle of trying to follow too many storylines.
Yesterday OH came back from golf sulking because his golf trolley had disappeared. Nothing else matters just his problems. We were to have grandchildren for afternoon/night but he sulked his way through the pizza restaurant experience and wasn't interested in any games or puzzles.
After handing children back we went to golf club and his trolley was in the shop for safekeeping. As I had worked out, he had taken it out of the boot, reached in for golf bag and then decided he had lost his trolley. Putting my Alzheimer's knowledge cap on I think he couldn't see it because it is black and quite splindery - would have merged into the tarmac.
Oh well, he said, all's well that ends well. No acknowledgement of his foul mood while the children were here. I'm beginning to think I should keep him away from the grandchildren. Sounds awful I know but he seems to find them annoying and nags at them for pulling the furniture etc. Perhaps it would be better for them to remember him how he was last year when he would play cards and games with them.
Thank goodness we have this site. Thanks for reading. Nearly ready to go back into the frey.
Yesterday OH came back from golf sulking because his golf trolley had disappeared. Nothing else matters just his problems. We were to have grandchildren for afternoon/night but he sulked his way through the pizza restaurant experience and wasn't interested in any games or puzzles.
After handing children back we went to golf club and his trolley was in the shop for safekeeping. As I had worked out, he had taken it out of the boot, reached in for golf bag and then decided he had lost his trolley. Putting my Alzheimer's knowledge cap on I think he couldn't see it because it is black and quite splindery - would have merged into the tarmac.
Oh well, he said, all's well that ends well. No acknowledgement of his foul mood while the children were here. I'm beginning to think I should keep him away from the grandchildren. Sounds awful I know but he seems to find them annoying and nags at them for pulling the furniture etc. Perhaps it would be better for them to remember him how he was last year when he would play cards and games with them.
Thank goodness we have this site. Thanks for reading. Nearly ready to go back into the frey.
My father diagnosed five years ago and most people would not know
It may be that the future will not be a bad as you fear. I have been looking after my father for three years after diagnosis in 2011.
He is still able to make one independent journey on foot. He goes to parties and entertains my friends with one of his twenty stories. We have taken him on holiday. He has taught my sons some of his woodworking skills. He is chatty and friendly and a sunny personality. (he wasn't initially, but now he has forgotten he has alzheimers and just thinks he has a bad memory because he is getting older). He's a bit hazy about the youngest grandson and doesn't really remember the latest girlfriend but they are all kind to him and he is happy with that. He can still add up the scores for the magnetic darts match quicker than anyone else and thrash a normal person at draughts.
We moved him from his home and I think that was a good thing {and it could be a good thing now for you to think about where you want to live} and suddenly everything was simpler no need to worry about bills, saving money, the hassle of daily life.
Over the past year I have seen three people from his alz coffee morning depart and of the three two were continent to the end, all could talk, some could banter. They were obviously not the people they had been, but they were not brain dead.
There are obvious reasons why message boards can have an over representation of people who are at the sharpest end of the problem.
However you must not underestimate the need to keep friendships. Think now about crossing hard bridges in finding sitters and other people to help you care so you can continue to have a life outside your home.
It may be that the future will not be a bad as you fear. I have been looking after my father for three years after diagnosis in 2011.
He is still able to make one independent journey on foot. He goes to parties and entertains my friends with one of his twenty stories. We have taken him on holiday. He has taught my sons some of his woodworking skills. He is chatty and friendly and a sunny personality. (he wasn't initially, but now he has forgotten he has alzheimers and just thinks he has a bad memory because he is getting older). He's a bit hazy about the youngest grandson and doesn't really remember the latest girlfriend but they are all kind to him and he is happy with that. He can still add up the scores for the magnetic darts match quicker than anyone else and thrash a normal person at draughts.
We moved him from his home and I think that was a good thing {and it could be a good thing now for you to think about where you want to live} and suddenly everything was simpler no need to worry about bills, saving money, the hassle of daily life.
Over the past year I have seen three people from his alz coffee morning depart and of the three two were continent to the end, all could talk, some could banter. They were obviously not the people they had been, but they were not brain dead.
There are obvious reasons why message boards can have an over representation of people who are at the sharpest end of the problem.
However you must not underestimate the need to keep friendships. Think now about crossing hard bridges in finding sitters and other people to help you care so you can continue to have a life outside your home.
Yes, you are right and I know I am burying the distress, I've learned to do that as a way of coping. But it's just under the surface and I've known I need to take it somewhere. My local MIND offers a counselling service to carers of people with dementia and I'm starting an eight week block of sessions soon. Ranting here is a great release and some wonderful replies and support all of which is a great help too.
Clinical Trial
Hi Mal2
My wife has just finished 12 months on the ELAD (Liraglutide) clinical trial
I injected her every morning with either a placebo or the drug.
She had two brain scans at the start and at the end of the trial, the scans showed there was a worsening in her condition of which I know I didnt need a scan to tell me that so she was on the placebo or the drug didnt work.
I will not find out what I injected her with until the end of the trial.
I have spoken to the head of the trial Dr Paul Edison as to what happens next for my wife. i feel that after all our efforts its a matter of good bye and thanks for participating in the trial
I have been told that some GPs have been prescribing it for their alzheimer patients who have been on the trial but mine wont because it is not licenced for alzheimers and he says he could be struck off.
Hopefully the results will be positive and at last there will be a cure for this dreadful illness.
If any other carers took part in the trail I would like to hear from them
Hi Mal2
My wife has just finished 12 months on the ELAD (Liraglutide) clinical trial
I injected her every morning with either a placebo or the drug.
She had two brain scans at the start and at the end of the trial, the scans showed there was a worsening in her condition of which I know I didnt need a scan to tell me that so she was on the placebo or the drug didnt work.
I will not find out what I injected her with until the end of the trial.
I have spoken to the head of the trial Dr Paul Edison as to what happens next for my wife. i feel that after all our efforts its a matter of good bye and thanks for participating in the trial
I have been told that some GPs have been prescribing it for their alzheimer patients who have been on the trial but mine wont because it is not licenced for alzheimers and he says he could be struck off.
Hopefully the results will be positive and at last there will be a cure for this dreadful illness.
If any other carers took part in the trail I would like to hear from them
People to support you?
When my husband was diagnosed 5 years ago, we were asked (by our Quaker Meeting) if we would like to have a couple of people to support us, who would visit us whenever we felt that we had questions, or things to decide, or if we just wanted company. We said yes and although we've not invited them here very often, we know that they are there if we need them. Are there people that you might ask to do this for you?
When my husband was diagnosed 5 years ago, we were asked (by our Quaker Meeting) if we would like to have a couple of people to support us, who would visit us whenever we felt that we had questions, or things to decide, or if we just wanted company. We said yes and although we've not invited them here very often, we know that they are there if we need them. Are there people that you might ask to do this for you?
