Gosh yes, it seems petty when it happens once, but when it happens hour in hour out seven days.a week then it becomes a real problem. I fully understand and commiserate.I understand, karaokePete, and Margherita and NaeSporran, and you as well DennyD, and thank you - I am so glad I can come on here and have a moan.
I have only known my other half for seven and a half years and he was lovely when I first met him, but I reckon this dementia has been taking him away from me for about 4 years now, at least.
Add to the mix this flaming awful ileostomy he has had since last year and that he cannot deal with.....
I think one of the things that really gets to me is that keeping the home clean and tidy is so difficult with him. He has increasingly silly ( to me but not to him) habits. At 6 foot 2 inches, he has now decided that it is easier to pee in the bathroom wash basin than down the toilet - I have tried reasoning with him but we all know that does not work! He has also decided that he needs for some weird reason ( I know, not his fault!) that he needs a row of folded up loo paper all along the top of the toilet cistern - completely does my head in. The towels are his and his alone - I take mine into the bathroom every time I go there - quite normal for lots of households - but he won't let me wash his and they smell- I sneak them out when I can. We only have the one bathroom, sadly.
On a different topic, he does not like the light on the dishwasher being on. Our dishwasher pauses part way through the cycle, and he switches the light off, which means he switches the machine off, and then the dishes don't finish being washed/dried. The dishwasher is my one luxury !!
All sounds very petty as I read it, but put it all together along with all the other things, and one needs a rant now and again. Yes, I struggle, I feel I want to go and live up north where I come from, I feel his children should be doing more, I feel very isolated.
Our Direct Payments have run out. I phoned them 5 weeks ago, and they said they wouldn't do anything till the money had run out. In all fairness, they did ring back and do a telephone interview, but then said they would have to get someone to come out and see us to do another Care Plan - I phoned last week and they said they had not got any further with it, and it has not been allocated to anyone.....
My dear OH is happy with that as he hates going for respite anyway!!
Oh well, the springs bulbs are doing their best to flower, so all is not lost
If you partner has dementia - how many of us want to walk away?
- Thread starter maryjoan
- Start date
Wow that’s pretty horrible John - mostly my husband is nice - but as the day wears in so does he - right now he is refusing to go to bed - usually goes very early. I am trying just to ignore the impasse. But I am glad I found out early enough where his strange evening attitudes came from - and can try to accommodate him .
Oh it is the responsibility - you expect to be responsible for your children - but not your partner. I have just realised that my OH takes no responsibility whatsoever for himself any more, or tasks, or anything - makes the load harder to bear somehow.......and living in an isolated but lovely village with no car - I have to think about food supplies, ( Mr Tesco online) also multitudinous prescriptions for himself, all the supplies connected with his stoma, - I seem to be forever ordering things, or remembering to 'stock take' especially his stoma supplies...... it just goes on... without the dementia as well that has taken him away, far away....That’s lovely Tony -
But the initial time coming to grips with the certain D future is very hard.
I feel I have aged 5 years this past year - trying not too - but it’s the constant responsibility that is very wearing. I wish there were some easy alternatives
Hi:
Couldn't get into my email account the other day, I saved so much money because I tend to order online also.
Sad thing is I enjoyed going shopping ALONE.It's been a while since I contributed here so I've read a few of the recent posts.
I do empathise with all of you. My wife can be frustrating and irritating just about all of the time. Loud, ignorant, rude, selfish and unfeeling some of the time. Certainly not appearing like the person I married. However, I can still, just about, see the person I married under the dementia because the truth is that they are still there to be found if we can reach them, which I know is, perhaps, not always possible. I am reading a book with case histories at the moment and came across one where the PWD was aggressive and impossible to handle, even though she was in a person centred CH, until a throw away remark by a relative led to the discovery that she had been an abused child and it was sussed that the plain clothes worn by CH staff as they changed her dressings and toileted her in her private room were awaking fears of being abused again. Moving these tasks to the treatment room solved the issue. It's so complex. Are there any secrets that our OH's have kept from us due to feelings of guilt/shame that are now causing us problems? My wife has always been anxious and depressed(since long before I met her some 15 years ago) but, despite digging, I have never been able to discover an issue that should be causing problems now - trying to understand is so difficult.
We aren't professionals, we struggle to understand, we live in a world full of challenges while on an emotional roller coaster. We are battered into corners and often don't get much, if any, help. Unlike some, I am not dependent on my wife from a financial point of view so I continue with the struggle out of love, or is it resigned acceptance, I think I know although at times of stress I question myself. However, I'll continue to think it's love and battle on with the task of accepting and accommodating the dementia.
This has been a bit of a waffle, but like all of you I feel better for getting it out there and thank TP and all of you for the opportunity to do so. Frequently I am glad that I can come on TP and escape from my own daily grind and occasional turmoil by trying to help others in theirs.
I do think of all of you daily and wish you all the best in this struggle we share.
I do empathise with all of you. My wife can be frustrating and irritating just about all of the time. Loud, ignorant, rude, selfish and unfeeling some of the time. Certainly not appearing like the person I married. However, I can still, just about, see the person I married under the dementia because the truth is that they are still there to be found if we can reach them, which I know is, perhaps, not always possible. I am reading a book with case histories at the moment and came across one where the PWD was aggressive and impossible to handle, even though she was in a person centred CH, until a throw away remark by a relative led to the discovery that she had been an abused child and it was sussed that the plain clothes worn by CH staff as they changed her dressings and toileted her in her private room were awaking fears of being abused again. Moving these tasks to the treatment room solved the issue. It's so complex. Are there any secrets that our OH's have kept from us due to feelings of guilt/shame that are now causing us problems? My wife has always been anxious and depressed(since long before I met her some 15 years ago) but, despite digging, I have never been able to discover an issue that should be causing problems now - trying to understand is so difficult.
We aren't professionals, we struggle to understand, we live in a world full of challenges while on an emotional roller coaster. We are battered into corners and often don't get much, if any, help. Unlike some, I am not dependent on my wife from a financial point of view so I continue with the struggle out of love, or is it resigned acceptance, I think I know although at times of stress I question myself. However, I'll continue to think it's love and battle on with the task of accepting and accommodating the dementia.
This has been a bit of a waffle, but like all of you I feel better for getting it out there and thank TP and all of you for the opportunity to do so. Frequently I am glad that I can come on TP and escape from my own daily grind and occasional turmoil by trying to help others in theirs.
I do think of all of you daily and wish you all the best in this struggle we share.
Oh how true. This made me think of a few days ago when I mentioned to my wife that she hadn't showered for a couple of days. Later I walked up the hall to discover her discarded clothes just thrown in the hall - muggins here had to pick them up and put them in the laundry basket. Just a little thing - but one more straw on this camel's back!
Are we spouses and carers, or just slaves. I think I know the answer but doubt can creep in when tiredness overcomes us.
It does indeed - sometimes my OH speaks to me like a servant!! It griped me this morning, ( about 7am) when I sat at my computer to do some work, before he got up,and he had put his cords by my desk to have the belt loop sewn. I knew about it, didn't need it near my desk - and when he got up, eventually, he haughtily asked had I done them --- erm NO but I will, you don't need them today!Oh how true. This made me think of a few days ago when I mentioned to my wife that she hadn't showered for a couple of days. Later I walked up the hall to discover her discarded clothes just thrown in the hall - muggins here had to pick them up and put them in the laundry basket. Just a little thing - but one more straw on this camel's back!
What a brilliant post! You are so often able to put into words the things we struggle to think clearly about... thank you for that. At the moment, snooker is my friend. The World Championships from the Crucible are on for hours and hours and hours - and he sits and watches them for hours and hours and hours - during the day, I join him for an hour here and an hour there and I am beginning to understand the game a little - but it is giving me the chance to get some jobs done, enjoy some gardening., and work....... my poor ould fella is still there somewhere, its just that some days I need a bigger spade to dig him out of the dementia pit!!
Highlight of my day not long ago was collecting the laundry ...Hi:
Couldn't get into my email account the other day, I saved so much money because I tend to order online also.
Our lives seem to be in an ever decreasing circle- I never knew what that saying meant until I found myself in this situation.........
Just one of those mornings when the housework (we do it ‘jointly’) ended up with her finding fault in everything and basically being nasty then the silent treatment until my son phoned to ask me out and another non stop rant. Given the situation I went to my sons and on returning home all was peace and tranquility and all forget, but not by me! Thank you for concern, as with others just needed somewhere to vent.
And there's more.... Yesterday I had an interview with our solicitor with a view to setting up LPA. my wife put on her best mood and appeared almost normal, but now and again she slipped into Alzheimers mode which did not go unnoticed by the solicitor.
The interview finished we were about to leave the room when my wife pushed me out of the room and slammed the door. I could hear her telling the solicitor that I was the problem and not to listen to me. I re entered the room and escorted my wife out.to the car.
I asked her what was all that about? The reply was that she knew that all her family were plotting behind her back in order to steal her money.
When I got home I opened a bottle of red wine.
Oh @john1939 I am so, so sorry. How absolutely devastating. Please know I am holding you in my thoughts. And I thought I had problems with my OHs paranoia! NOTHING like this! Very best wishes, Carolyn.
Sorry for the late response - just noticed this comment. My husband has been walking slower and slower - I find when we take the dog for a walk, I am always well ahead walking at a normal pace. If I walk with him he just gets slower - the only way to keep him moving is to walk ahead of him! I can't say I have noticed him stopping in doorways although he does sometimes stop suddenly when he is walking then looking around like he is wondering where he is and what he is doing there. He also seems less steady on his feet, balance is somewhat off, although no falls yet.
The Dr. at the memory clinic also told us he did not think he had Lewy Body dementia (when he was initially diagnoised last year) but I have thought all along he does. We were at the Memory clinic a week ago and the Dr (based on his current symptoms) appears to be changing his mind.- we will see.
We did the LPA forms just before we got the diagnosis (I was sure by then what the diagnoisis was going to be). I did them myself and for both of us at the same time as I wanted OH to not feel 'singled out'. To be honest, having recently heard of a relatively young couple go through the husband having an unexpected massive stroke - I think everyone, whatever their age should have a LPA in place 'just in case' - and let their family know very clearly what they want should the unexpected come along. Bottom line tho' by doing your own LPA together with the 'patient' I think does help them to accept having it put in place.
I realise you have already been to the solicitor, but these forms while many pages long, are actually quite easy to complete yourself. To get certified copies, all you need to do is order a self-inking stamp (about £30) with the correct wording that you stamp on each page, which is given to you once registered, then sign and date each page and having registered it, make copies of the original, registered document you recieved back after registration - stamp each page as noted on the documents you will be sent - sign and date each page and you then have everything in place for when you need it.
Hello Herewego, thanks for your post. Yes you can go that route if you wish. To be honest my brain is so fagged out that I could not cope doing it because of the colossal amount of things which I have to remember to do. The latest thing is I have to take my wife's fasting blood sugar reading and record it for her GP.A letter arrived this morning advising that my wife is on a waiting list to go on a waiting list for diet advice because she is type 2 diabetic.she is on 4 consultants books at the moment so keeping those appointments is a marathon in itself.
All that as well as keeping up to date with housekeeping washing buying and preparing meals.
I will go off at a tangent now. While at the solicitors I asked him about the possibility of the bank putting restrictions on our joint bank account.because of my wife's diagnosis.
Thy can't do it, was his reply, well that is one worry less. This statement is only referring to N Ireland as the law is different here.So it is always wise to seek professional's advice.
@Herewego - you have just described how my husband walks - it’s pretty funny when you have to cross the road - I’m sure onlooker think I am mean not to wait - but when I do he slows and stops! Sometime I just walk on a distance - look back - and he hadn’t moved !! So back I go !!
@Herewego - you have just described how my husband walks - it’s pretty funny when you have to cross the road - I’m sure onlooker think I am mean not to wait - but when I do he slows and stops! Sometime I just walk on a distance - look back - and he hadn’t moved !! So back I go !!
Oh the slow walking! @Herewego Drives me crazy too Mudge. And if I go slower, he goes even more slowly. The other day I thought I’d he went any more slowly, he’d be walking backwards!
I’m afraid in my OHs case he does it more when he’s angry with me, because I’m a fast walker and it’s his way of protesting. When he was annoyed the other day, and I slowed down to accommodate him and to stop him getting lost, he managed to slow down even more. After we’d done what we had to do, at the bank of course, and with him refusing to speak, I’d had enough. The car was in sight, in a straight line from where we were, about 150 metres away, so rather than lie down in the gutter and scream, I set off for it at a cracking pace. Didn’t look back once.
Got to the car. No sooner had I opened the driver’s door than - guess what?! YES! There he was, opening the front left passenger door. Quite a turn of speed he’d put on, hadn’t he? Maybe he thought I might drive off without him!
Very funny Carolymp - you’ll have to keep that up ! See if you can make him walk fast again -!!!
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