I am scared for my Dad
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If dad said to me that he would like to move in to a nursing home then I would be thrilled.
The issue is he is not saying that.
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Very few people ( particularly those with dementia) will express that they want to go into a nursing home. But sometimes you have to do what is best for the person - they dont always know or see what is best for themselves.
The biggest problem you are facing is that he needs round the clock care to keep him at home - from what you have said he cant be left alone. The hospital team have concerns for him which have to be considered - believe me usually hospitals dont express this concern and usually want to send the elderly home regardless. If you dont have reliable 24 hr care available for him it will be only a matter of time before you get a call that he has caused an accident, fell or is missing. Dementia can deteriorate quickly and things could go badly wrong in a short time without warning. The most important thing is for you to keep your dad safe and he would safest in a nursing home. You also mentioned that he is loving and benefitting from the interaction in hospital - in sounds like he could actually love the activities in the nursing home.
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Your first sentence, I agree.
Ok so things he can do: Change his clothes and wash when prompted. Make tea. Light housework such as sweeping and washing his cup. Looking after the garden so using lawnmower, drive short distances when accompanied and manoeuvre the car through a driveway and into a garage. Takes out his medication from his blister pack. Make and receive calls. On his mobile.
What he knows: His surroundings and where everything is and where he is. How to get to post office, local shop, church, graveyard, doctor. What day he collects his pension on. Where his money is. Who I am and the people close to him that he sees and talks to on a regular basis.
What he doesn't know/Can no longer do: The year, his date of birth, how to get to close by towns that he has been going to all his life, remember to change his clothes and wash himself, wash his clothes, change bed clothes,recognise certain people and know their names, uses different words for things. For example if he can't find mobile he will ask me "where is that thing of mine" or something replace mobile with a random word.
The concerns I do have: I have seen him take his medication but at the same time it's something I worry about. Having a fall and either forgetting to tell me or remaining on the floor for days. Feeling lonely and sad.
I know how quick all of that can change. I have plenty to think about.
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My granny struggled with dementia for 10 long years, and, similarly, refused and got irate when offered treatment or anything outside of the comfort of her own home. Thankfully, we had my grandad who was with her every single minute of every single day who was healthy, fit and able to care for her. Even at that, she managed to walk off and disappear a few times (we found her, thankfully), and hurt herself every so often. She ended up having a public health nurse come in to see her a few hours a week, which made it more bearable for my grandad as he had a bit of a break and someone else to talk to about it.
Unfortunately, unless you or someone else are willing to be with him all the time, he needs to be monitored constantly for his own safety. It's very hard when they are protesting, and do not want interventions. However, you have to recognise that there comes a time with this illness that they become a danger to themselves. It will be difficult, and it will hurt to see him there when he does not want to be there, but it is not your fault, nor is it his fault. It is the fault of a cruel illness. You will sleep better at night knowing he is in the care of people who know best how to care for and help him. I have spent time worrying about someone going missing due to dementia, trust me when I say I do not wish that kind of anxiety and pain upon anybody.
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I get the sense you're somewhat holding onto the the idea of what your father was, and not the reality of where he is right now. Having no siblings and having lost your mother, it cant be easy to come to terms with the impending loss of the last member of your immediate family, and a nursing home only solidifies that reality.
The truly loving thing to do is to ensure his comfort and safety for his remaining time and that's undoubtedly in a nursing home now. Anything else is a denial of the massive risks of his current setup.
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That is certainly playing on my mind but there are other things as well. Having no siblings doesn't bother me and I have accepted the loss of my mother. Family for me goes beyond parents and blood.
The issue isn't my dad being in a nursing home instead it's going against his wishes even though what he wants may not be best for him. That is the struggle.
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I agree with this. The SAGE advocate may be the best person to advise independently.
It was so much easier to blame it on Them. It was bleakly depressing to think that They were Us. If it was Them, then nothing was anyone's fault. If it was us, what did that make Me? After all, I'm one of Us. I must be. I've certainly never thought of myself as one of Them. No one ever thinks of themselves as one of Them. We're always one of Us. It's Them that do the bad things.
Terry Pratchet
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Nobody would want to live in a nursing home given the choice
Really what it boils down to is
Can he go back home and remain safe?
His Brother and Hospital Staff seem to be suggesting they have concerns for his safety. Are they justified?
It was so much easier to blame it on Them. It was bleakly depressing to think that They were Us. If it was Them, then nothing was anyone's fault. If it was us, what did that make Me? After all, I'm one of Us. I must be. I've certainly never thought of myself as one of Them. No one ever thinks of themselves as one of Them. We're always one of Us. It's Them that do the bad things.
Terry Pratchet
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I have spoken with Sage and made an application for help.
Dad's brother's concerns are not the same as mine. He thinks daddy will fall in to the local river or set the house on fire.
The hospital and myself do share the same worries. Potential for confusion about medication, potential for falls, and not remembering to stay clean.
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@worried daughter,
He is never going to say that.
If you are waiting for him to come to this conclusion himself that he needs to be in a nursing home, then its never going to happen.
The time will come when you will have to take the decision out of his hands and make it for him. Unfortunately that is the reality of dementia. Your father has reduced mental capacity to make decisions for himself.
I say this kindly, having been in your shoes and having had to take the decision out of my mother's hands for her own safety.
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i have first hand experience of this. i agree with all the previous posts. You must make the decision now to a nursing home, because there is not enough supports.
and on a practical note, if he goes home and there comes a time when he needs a nursing home, you may end up in a crisis situation and this should be avoided at all costs.
on a selfish note, the medical team are "taking it out of your hands" by helping you.
if the time comes when he needs to go, how do you think you will get him to go to a nh? you will lie, and pretend you are going somewhere else and leave him there.
saying you are protecting his wishes is a grand statement but unless you are with him in the house all the time, you can't help him. the only way to keep him at home is to live with him, on top of the supports.
home care supports can be unrealable, and prone to issues.
I believe a SAGE advocate is of no use here, and the longer you delay the process, the longer he stays in an unsuitable environment i.e.
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My mam had dementia. She was in her late sixties when diagnosed and we kept her at home till it was impossible to do so. When mam went in to a nursing home she was completely dependent and could not even have a conversation. She was also not completely aware of her surroundings and expressed no preference regarding staying at home or not.
Each person with this dreadful illness is unique but perhaps I am hoping for the same withy Dad, that he will reach a point where he simply does not know where he is.
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Yes
I am asking do his brothers concerns have merit. Are the risks a possibility?
How can the concerns that you and the hospital have be addressed?
It was so much easier to blame it on Them. It was bleakly depressing to think that They were Us. If it was Them, then nothing was anyone's fault. If it was us, what did that make Me? After all, I'm one of Us. I must be. I've certainly never thought of myself as one of Them. No one ever thinks of themselves as one of Them. We're always one of Us. It's Them that do the bad things.
Terry Pratchet
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I'm sorry to have to tell you this but your dad's brothers concerns are very valid - your dad has dementia and unfortunately this illness leaves him very vulnerable. If he goes for walks or wanders off near the river there is a risk he could fall in the river ( particularly at night) and yes he could set the house on fire. His behaviour will be very unpredictable. Your uncle is absolutely right.
We were like you, we thought our uncle was fine until he got out of bed and went out driving late one night and couldn't remember his way home. He was found stopped on the side of the road but couldn't even tell the gardai where he lived. He was apparently sitting there for a few hours before he was found. This could also happen your dad.
Being honest you seem focused on his lack of washing and wearing clean clothes which should be the least of your worries - his safety is the biggest issue which you seem to be ignoring
I'm sorry OP but you need to have a serious chat with yourself and put the safety of your dad first. Either you need to move in with him if you want him to live at home or he needs to go to a nursing home. I'm sorry to be very blunt.
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I have read this thread and I would be very slow to judge someone's capacity based on this thread alone.
It was so much easier to blame it on Them. It was bleakly depressing to think that They were Us. If it was Them, then nothing was anyone's fault. If it was us, what did that make Me? After all, I'm one of Us. I must be. I've certainly never thought of myself as one of Them. No one ever thinks of themselves as one of Them. We're always one of Us. It's Them that do the bad things.
Terry Pratchet
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I completely disagree on a Sage advocate being pointless. The person is a bit lost here between what his brother feels is his best interests and what his daughter feels are his best interests. The advocate is there to represent his interests independently. The advocate should also have quite a good knowledge on legal issues arising here also; e.g. enduring power of attorney, advanced healthcare directives, decision supports arrangements if/when her father loses capacity as arises with the Introduction of the assisted decision making act on 2023.
It was so much easier to blame it on Them. It was bleakly depressing to think that They were Us. If it was Them, then nothing was anyone's fault. If it was us, what did that make Me? After all, I'm one of Us. I must be. I've certainly never thought of myself as one of Them. No one ever thinks of themselves as one of Them. We're always one of Us. It's Them that do the bad things.
Terry Pratchet
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I don't believe they are. For my dad to fall on to the river he would need to either climb a sort of fence or walk a bit and cross a bridge to reach the side that isn't protected and then get very close to the edge and he lose his footing.
It's just not him. I would be shocked if he headed off with his walking stick in that direction. He doesn't wander or go for walks.
Nor does he turn the electric cooker on. Ever. Up until recently he was setting the solid fuel range but he has stopped that
What would be more of an issue is him getting his car keys and heading out by himself for a drive but I have taken his keys.
The concerns I do have can be helped by a carer coming in to the home and keeping an eye on him. "Here are your tablets for this morning....here they are for this evening.." that kind of thing. "Let's put on some clean clothes etc".
The potential for falls. That is my biggest worry and would be the reason why I would discard his wishes to remain at home.
@Deeec The reason I mention his hygiene so much is because they are, along with falling and med confusion, currently the biggest issues.
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I'm sorry you're going through this, I really am. We as a family had to make this horrible decision too. In our case, it was about my mother who had worsening dementia and was no longer suitable for being kept at home. Thank god it wasn't a decision left on my shoulders alone but it was still very upsetting for us. To cut a long story short, my mother went into a nursing home and she eventually died there. It was 100% nailed on the right thing to do for her when she reached that stage of her illness. I also know that very few people dump granny in a nursing home just to get her out of the way. By the time most dementia sufferers are placed in a home, they and their families have been on a long long road. It is not an easy decision to make but it gets better once you gain some perspective.
I see a lot of myself in you. I struggled to accept that my Mum had dementia and I lied to myself all the time. I minimized her worsening illness and used to think she was better than she was. It was a coping mechanism but not a good long-term one for me or her. I got so so mad at my father who was more clear-headed about what was happening to Mum. Your anger at your uncle sounds like me at the time. You're not going to like me saying this but your uncle is 100% spot on. You're still deluding yourself into thinking that your father isn't as bad as he is. I did that too. Your father might be reasonably OK for now but dementia is progressive. I wish it wasn't but that's the unvarnished and distressing reality.
Starting a fire or falling in a river are not fanciful scenarios at all. We had near misses with Mum and they weren't very far from what your uncle has suggested. I see that now because I've come out the other side of this. Dementia sufferers don't think in the same way we do. Their short-term memory gets addled and they quickly forget things that we take for granted. If you put on a pot of spuds you know to come back and check them. A dementia sufferer will walk away and there's no guarantee they'll come back. If a coal falls out of the fire a dementia sufferer may not have the wit to do something about it. My Mum had a bad fall and didn't know enough to try and break it. She fell like a skittle and broke some bones. I have no doubt that if she had fallen into a stream or a drain she'd have drowned. Even a kid's paddling pool in the garden would've done for her. They can also forget to chew their food and are at risk of choking I'm sorry that I'm upsetting you here but this is the perspective I have gained with time. When you're in the middle of battle you don't see these things.
Dementia is progressive and sad to say, your father is going to get worse. You might be able to hold back the tide for now but a few months can make a huge difference. Even if you push away any big decision for now, it will be back. What you have to choose are both hurtful. You leave your dad on his own and you hope nothing bad happens. Or you put him into a home which future proofs his safety and care. Sad to say your father won't tell you he wants to go into a home. I doubt many people ever ask for that to be honest. But if you take care to help him settle in it will be good for all of you. You are catastrophizing about this and basing your decisions on (1) what he's like now and (2)a worst-case scenario.
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I am fully aware of the progressive nature of dementia. It will only get worse and my father will eventually be unable even to speak and be bed bound but he isn't there yet. I don't know if I got it across properly in this thread but I know how this illness goes. I've seen it and lived with it and dealt with it. My dad won't get better.
The issue I have with dad's brother isn't his concerns but how he voices them. The aggression and the bullying is pointless and not going to help any of us. Going behind my back rather than asking "how can I help here" "what do you need from me".
I completely understand his concerns and why he would have them. Shouting at my dad, at the nurses, at me is just not acceptable. That's why I have such an issue with him.
Dad and me haven't been on a long road with his illness. My struggle is trying to do what is right by him.
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But presumably your mother had your father living with her? Your father is living alone.
At least take the car keys off him. An 80 year old with dementia should not be driving, under any circumstances.
I have no further advice to offer.
Best of luck.
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The right thing by your father might not be the thing he feels is the right thing.
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Yes mam had my dad so it was different in that way. He doesn't have access to his car keys.
Living alone is very different to having someone with you.
I need all the luck I can get 😆
And lookit, all of you responding here and offering advice and your own experiences is very helpful and appreciated.
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This thread is resonating with people because many of us have been there. Dementia is one of the cruelest afflictions out there and there are no easy solutions. I wish you the very best in dealing with this. It's a nightmare.
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You have to do further research on where you actually stand in this process.
Two key words 1. Capacity 2 Safety
Your uncles voice should, can & will count, as he is raising concerns for the care of your dad, at home. You must appreciate any concerns, raised by anyone, need to be fully investigated. Rightfully so.
Ultimately, it seems the professionals agreed, albeit on review. His voice is as powerful as your own.
1. Dad has Dementia, ie decline in cognitive function. He needs to have his Capacity formally assessed. This is crucial for you. This will determine if he can continue making his own decisions or if the professionals need to. You, legally, have no power, as it stands. Of course your opinion & support is wanted however, it won't trump the professionals advice, if he is not capable.
Research Assisted Decision Making service/ Act. There is no "Next of Kin" or PoAs anymore, per se. It seems your solicitor isn't up to date on this recent change.
If there was no decline, he could sign a waiver & discharge home with no formal supports , against medical advice. This is not an option for your dad as Dementia means he does not have full capacity. Legally, you've no power to sign this for him.
If professionals are adamant he is not *safe* to go home & you don't accept, manage & mitigate, in so far as is reasonable, & you insist on discharge home, you could potentially end up taken to court by HSE, they won't discharge him. Reason being HSE have a duty of care to him, if they are not happy him going home is *his* best interests then you're on thin ice here. THAT is the purpose of the family meeting. That's step 1 in planning his discharge / long term care plan ie home or elsewhere.
He is likely to transfer to a respite hse bed to give time to all involved to assess & plan. This will be a nursing home. Opportunity to gauge his reaction.
Sage are of no use to you as they are an advocate to the person, IF they have the "capacity to make informed decisions". Your dad needs capacity for them to be of any use. Sage are not medically trained, in any field or discipline , and therefore the acute staffs reports Trump all as Sage cannot cancel out a lack of capacity/ safety concern.
Home help or homecare package would be an option, the problem is staffing this. Remember top tier package is 3x 1hr calls a day. You need to provide care the remaining 21hrs.
Can you or him move into same house?
Day centre/ neighbours are great support as are private care agency ( if they cover his locality).
You need to forget about hygiene/meds food. They're small tasks easily sorted with care put in.
Your biggest battle (with the hospital & community services who do the actual assessment of his care needs in the home) is your dad's safety. THAT IS THE SINGLE BIGGEST ISSUE .
On top of safety concerns, we have a man lacking capacity to make a decision on his safety / best interests.
Please believe me when I tell you I know, first hand, individuals with dementia, living at home that .
1. Fell & spent overnight on the floor, despite wearing a panic alarm
2. A man who wandered, first time ever, down to a lake 5km away, climbed aboard about & was found sleeping on the boat there next morning.
3. Loads and I truly mean loads, who set their own homes on fire.
4. 3 who went missing - 1 found RIP.
You need to forget dad's " wishes" if proven he does not have the cognitive ability to process & retain information & make an informed decision.
At that stage, it may fall to you to manage his care needs, if you demonstrate you are actively protecting his safety ie his life.
If there is serious concerns for him with you in control of managing his care, decision making powers will be removed from you.
All professionals opinions will focus on your dad's safety needs 1st & foremost. All else is fluff.
Above all meant with best of intentions & factual albeit a tough read.
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I am open and engaged with the medical team regarding dad. I have gotten upset and frustrated and expressed my fears. Thankfully they understand and are aware of my struggle and desire to do right by my dad.
His capacity will be assessed by Psychiatry of Later of Life.
My heart breaks when I think of going against his wishes. Oh Lord I don't know how to do it. I feel sick just thinking about it.
Having decision making powers (in a way I have none) taken from me would require the hospital to apply to the circuit court to be his decision making representative. Do I have that right?
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Just to say I really resonate with the fact that it's incredibly difficult to make a decision that goes against what the person wants. Main thing to keep repeating to yourself is what will be best for them in the long run. The decisions we had to make during my granny's battle with dementia were heartbreaking, I can't even imagine how it feels when it comes to a parent.
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no is taking any decisions away from you, thats a bit dramatic. The medical team always take the family views into consideration, its vital, its so important. However, if you insist on making them discharge your father home, and they assess him as not having the capacity to make "an informed decision" they will make it on his behalf. HSE extremely loath to go to court, but will have to if you decline their decision and decline to be next of kin.
This is a journey that is taken by families every day, in different hospitals and homes every day. I realise this is the first time for you and i understand it all too well. I've gone through it twice, and I worked in the system for years.
I repeat what I said earlier about SAGE. No good for you in THIS scenerio.
what are his cognitive scores? what did the team tell you about them? This is the critical thing to consider if you are thinking he can be discharged home with carers. If done well, they are solid proof of someone's ability to make a decision, to act safely, to be able to think clearly, and to be able to handle minor issues as they arise.
FYI, while your wishes and your uncle's wishes and thought etc. will be taken into account, the medical team will not discharge him home unless they feel he will be safe. If they decide not to discharge him home, you should cooperate fully with the team, and do your best to find a nursing home that you can visit often etc. that is the best you can do at this stage
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OP I completely feel for you but do agree with a lot of the posters here. Having been involved with the care of both my granny & my dad (not dementia but still somewhat relevant) don't underestimate how difficult it is to keep someone at home.
My granny didn't want to leave her home & got on fine for a bit with carers coming in twice a day for an hour a time. Until she didn't & we went from needing 2 hours care to round the clock. My mam was a nurse so took leave from her job & became her full time carer. Even with that, we still had to pay for overnight care & some relief hours during the day for my mam as she couldn't do 24/7. It was more expensive financially than a nursing home but if my mam had not been able to take leave for almost a full year, it wouldn't have been possible. That is what you face trying to keep someone in their own home. It's noble & understandable but incredibly difficult.
As for my dad, he had cancer & wanted to be at home but was in the hospice for a long time as medically he needed care there that the home team could not provide. He did come home for a bit but again my mam had to give up work to look after him and it was not easy.
I don't want to be harsh at all coz I'm sure that you only want whats best for your dad but sometimes what's best and what they want aren't the same thing. As tough as that is. And you have to look not only at now but also further down the road. Are you going to be able to become a full time carer for him? Potentially giving up your job? Or pay for round the clock care in his own home?
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The way I see this is,
Listen to what the medical staff say
If he is returning home he as to agree to HSE care, while he is on hospital you will get the most support to get him out of the hospital. As soon as he goes home he is off their books.
If he goes home and gets care from the HSE, it will be from an agency like Home instead, Comfort givers, Ann’s Home Care. Ideally he will have one or two carers so he gets to know them or at least if familiar with them. The things – he won’t there will be one and then others will come and go, they all have lots of open positions and constant turnover of staff. How will he cope with that?
If he doesn’t get care from the HSE it is not a safe discharge don’t do it. Say to them loud and clear “this is not a safe discharge”
He is in hospital now and he’s coping fine so he very likely will get on fine in a nursing home. My heart jumps every time my mobile rings if my mother was in nursing home I’d be under a lot less stress.
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OP I've been there I know whats happening.
You have to let him go, he needs the full time care of a nursing home. Its a horrible condition, you can really do nothing about. It will break your heart trying to care for him and seeing what happens next.
You say Dad wants to go home. He isn't of sound mind, he is agitated and scared, we had the same, we took him home, we experienced the very worst of this, family infighting on what was right. Its a long dark mentally draining path you are about to go down.
I wish you well but if a nursing home is an option take it, you can not provide the same level of care and safety.
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