Understood. Just know care home not too distant future and don't want to prejudice chance of getting in one I want ( they want to know there is a years funds available) by spending too much on live-in now. And although I have PoA - registered with banks as well as OPG - he has enough capacity right now to say he doesn't want to spend his money on live-in care. ( Our finances are separate so it is his money, not ours, that would be spent) If going into care home it would be different as less choice really. He knows this would be his money. I'm not trying to hang onto it for any other purpose - have my own savings and house not affected. But know how easily care can swallow it up. Right now he doesn't even want any AA spent on help. The help I get comes from carer assessment. Will get live-in for a week or so later if I need it but frankly I think we are looking at residential CH by end of this year latest.
How can I insist my OH goes into a CH
- Thread starter Pots and Pans
- Start date
Being able to say that you dont want something does not mean that you have the capacity to understand the consequences. Most people with dementia will fight against having carers, live-in care and/or residential care because they are unable to understand why it is necessary. People with dementia often find loss of routine unsettling - they need their routine to ground them and give shape to their life, so will frequently resist any sort of change. That is why it is often said on here that if you wait for someone with dementia to agree, you will wait forever. Being able to understand the reasons for a decision, and the consequences of that decision, is one of the tests for capacity. Do you really think he has capacity, or do you think he is just saying no?
Suspect I might be in ostrich mode... head in sand. Think the CH will happen soon but dreading it myself... And some days are actually OK. Today was. It all seems to go wrong if I try to do anything at all solo ( like in a different room!). If I'm on call all the time we get a peaceful day. He is accepting some day carers right now so suspect I need to go softly-softly. Thanks, all, for the advice. I don't feel anyone else can advise so well as they haven't had to do this role of care themselves. I know you all understand the frustration, the wish that this wasn't happening, and the dread I feel at what is ahead.
I so agree with everything said here so far. I'm at that point when my OH has had to move to a Nursing home rather than Residential as they couldn't manage his behaviour any longer! On the one hand I feel relieved as it shows me that I couldn't manage either without a lot of carers which, considering the rural area in which we live can be problematic , but on the other I feel guilty that perhaps I should have tried harder! He's angry, threatening to kill himself when I've seen him as he just isn't capable of comprehending how difficult he can be. I'm learning, albeit slowly, that I have to let them take care of him now. You've obviously done your best so as hard as it is and it's not getting any easier, you just have to go with it. I'm getting to the point of looking into a financial assessment . It's eye wateringly staggering how much care costs isn't it?!! What choice do we have? We can't take it with us? Frightening to think back to what we thought we'd be doing with our hard fought for savings 20 years ago!!!
I also would be self funding and I learned last week that AgeUK are the ones to help in these cases. An assessment is only appropriate when you actually book them in and the care home does it. Like many others I would like an assessment 0 - 20 to see where we would be on the chart. After 9 yrs I feel we would be around 15 but just guessing like we all do.
His MOCA score was 11 at last consultant appointment and he has gone downhill since then ... But it is the physical threats almost every day that feel like the end to me.
If there are physical threats against yourself and you think they are credible then you really need to act as soon as you can before something awful happens. It may be his money but you as his Attorney are entitled to decide that he lacks the capacity to decide whether to spend it on care. To decide for himself he must:
1. Understand information given to him in relation to the decision. That has to include understanding his own condition
2. Remember this long enough to make the decision
3. Weigh up the pros and cons of his options. ( Note he doesn't have to get this right but has to be able to consider all the issues)
4. Communicate his decision.
He is allowed to make a very stupid decision if he can do all four things but if for example he cannot understand why there is a problem, after it has been carefully explained to him, then he doesn't have capacity and you can and should step in.
he doesnt have to physically hurt you, sometimes the threats and what he says can hurt more than physical violence. it doesnt have to be physical to be abuse
Because non of us are robots, the emotions and the psychological element in all of this is what makes decision making in respect of the transition into Care, a real challenge. Assessment in respect of dementia and as accurate Assessment as can be made, is imperative. The ongoing Care which you 0offer openly and willingly to a loved one becomes a different thing when dementia enters that Care regime. This is when " best interests " becomes a very relevant part of that Care. It focuses primarily on a loved one of course, but must also include you as Carer ultimately. What you do not want is the "blue light" event, whereby the transition into Care is brought about immediately amidst deeply unpleasant upset, anxiety, tears, a sense of utter despair and helplessness, all of which is addressed necessarily by medication and a horrible journey to an available facility amidst a cloud of unending sorrow. Melodramatic? In truth, my own dementia story.
Thus, if at all possible, a mindset which prepares for the inevitable transition is prudent. Dementia does not improve and there comes a time when you simply cannot cope, despite the very best will in the world. Daycare Centre once a week, ways by which we enable the transition to take place without angst, deviation , talking it over etc. All of this can be straightforward when capacity is intact. Dementia changes everything. It changes perception for a loved one and renders them vulnerable and helpless and subject to a plethora of moods, feelings, confusions, convictions which are false and so on. We then have to be the advocate in waiting, the enabler of " best interests". And then, when later on that regular visit to the Care Home becomes not an anxiety fueled experience but a genuine uplifting one because that loved one is settled and calm and living in a dementia community which is properly managed and the Care is good and wholly appropriate and you sit down beside that loved one with a cup of tea and you listen and you engage, even when it's in dementia world, then you go home with a warmth in the heart which grows. You are free of the sheer and potentially destructive unending type of Care which dementia demands 24 hrs a day and which tears you apart. You are free mentally too, knowing that the Care is in place and that " best interests" prevail. Yes, l know. How do you choose the right Care ? That is very important. But when you find it - and it does exist - you find respite and the ending of frustration and despair. None of this is ever easy and only when you tread the dementia pathway can you truly understand the depths into which it can take you. Those depths reveal the true meaning of Care, devoid of reward, ambition , self, gratitude or guilt. We know it to be, Love.
Thus, if at all possible, a mindset which prepares for the inevitable transition is prudent. Dementia does not improve and there comes a time when you simply cannot cope, despite the very best will in the world. Daycare Centre once a week, ways by which we enable the transition to take place without angst, deviation , talking it over etc. All of this can be straightforward when capacity is intact. Dementia changes everything. It changes perception for a loved one and renders them vulnerable and helpless and subject to a plethora of moods, feelings, confusions, convictions which are false and so on. We then have to be the advocate in waiting, the enabler of " best interests". And then, when later on that regular visit to the Care Home becomes not an anxiety fueled experience but a genuine uplifting one because that loved one is settled and calm and living in a dementia community which is properly managed and the Care is good and wholly appropriate and you sit down beside that loved one with a cup of tea and you listen and you engage, even when it's in dementia world, then you go home with a warmth in the heart which grows. You are free of the sheer and potentially destructive unending type of Care which dementia demands 24 hrs a day and which tears you apart. You are free mentally too, knowing that the Care is in place and that " best interests" prevail. Yes, l know. How do you choose the right Care ? That is very important. But when you find it - and it does exist - you find respite and the ending of frustration and despair. None of this is ever easy and only when you tread the dementia pathway can you truly understand the depths into which it can take you. Those depths reveal the true meaning of Care, devoid of reward, ambition , self, gratitude or guilt. We know it to be, Love.
Thank you. Agree. Don't want a blue- light crisis. Have found suitable care home (someone I know a little has husband with dementia there already and gives good reports). But he does still have capacity and except when losing temper can still be 'almost' who he was. Have just had 2 good days, for instance, with a good friend over and a session at memory cafe. Helped me with some gardening too. On the negative side, 3 episodes of incontinence yesterday, the last throwing him into temper again. Am tweaking medication at present with him starting memantine low dose again (made him wobbly before) which seems to have helped with the verbal abuse. Also booked some physio as a fair bit of anger comes from mobility issues and phone to GP led to possible tendonitis in one leg, causing pain. Not trying to walk beyond capacity (which leads to anger) but using wheelchair more also leads to sunnier moods too. Also working on him accepting idea of a respite break in the care home I have been round and have only just started getting carer in one day a week ... taken a few weeks to get going due to carer holiday/ self isolation for another after an overseas trip....and want specific people. This night help ( me, anyway!) So, giving all that a go and seeing consultant in about 6 weeks so will try and sum up for him and see if he has input. Definitely feel CH will be way forward at some point this year but also don't want to do it too soon. BUT if I get actual physical blow I WILL call police and then use my poa to arrange home. I know if this should happen husband will be upset himself and will almost certainly then agree. And yes, do think we could both easily be much happier with a CH situation. So, wish me luck. Still handling and coping and laughing as well as going off for a cry.. Bloody Alzheimer's
Good to hear your update @Pots and Pans, but do make sure you have a phone with you and a safe place to go in case your husband does lash out at you.
I think these relatively early stages of dementia are so tricky. I didn't live with my mum, but popped over to see her a couple of times a week. Sometimes things were fine, sometimes they weren't, and quite often mum could flip from being lovely to horrible in a heartbeat.
The fact your husband enjoyed having some company when his friend came over and he enjoyed the memory café makes me think he'll settle well in a home. Just keep plugging away at the 'little holiday' respite idea.
I think these relatively early stages of dementia are so tricky. I didn't live with my mum, but popped over to see her a couple of times a week. Sometimes things were fine, sometimes they weren't, and quite often mum could flip from being lovely to horrible in a heartbeat.
The fact your husband enjoyed having some company when his friend came over and he enjoyed the memory café makes me think he'll settle well in a home. Just keep plugging away at the 'little holiday' respite idea.
Bravo. It takes considerable resources to sustain willpower and a true perspective on just what path to tread with dementia and Alzheimer's is a notorious challenge. It sounds like you are made of " the right stuff". And yes, one sends good wishes and good luck for the months ahead. As you will know only too well, there are plenty of like minded "ears" to hear the story on here and that is heartening.
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