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I am scared for my Dad

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    #62
    Worried Daughter
    Registered Users Posts: 19 ✭Worried Daughter


    Ok. If the hospital decide daddy isn't fit to return home and I agree, then what happens?



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    #63
    josip
    Registered Users Posts: 13,639 ✭✭✭✭josip


    https://www.boards.ie/discussion/comment/121617348#Comment_121617348

    Agree fully on this. Our mam only ever got 20-25% of the HSE care that was requested for. The hospital always painted a positive view of the world about the amount of help that we would get, presumably to encourage an early discharge. But everyone else, GP, public health nurse, etc all warned us that the reality is far different.

    Our mother had always not asked for much, only "to die in her own bed". Although this seemed like a relatively simple ask, no world cruise or sky diving request, it put a lot of pressure on my siblings who were closer to home and trying to keep her in her home as long as possible. Eventually that strain became too much for them, and the last time she went to hospital, my siblings agreed that she couldn't come home, that they were no longer capable of providing care for her. She didn't have dementia, but wasn't physically strong and was becoming quite anxious and needy. So I had to tell her that she wasn't going to be coming home and was going to residential care instead. There followed a week long 'fun and games' between my mother, me and the hospital discharge team. When I visited my mother she would agree to go to residential care and say "what other choice do I have". But then when I was gone and the discharge team would talk to her the following day, she would say she wanted to go home. So I'd visit her again to explain things. Rinse and repeat 3 times before she acquiesced.

    She's been in residential care for over a year now and hasn't been back home since. The house where she was born and lived for 89 years and the family grew up in, is now empty and a time capsule to the day she left it for the last time in the ambulance to A&E. And it is very, very hard every time I going back to that empty house, dealing with the emotions of all that history. All of them happy, but I still bawl my eyes out thinking she'll never be back in there again and those are all just memories now in a few people's heads. But that's small beans compared to how I feel after visiting her in the care home, and I leave her knowing that she's safe and looked after by people qualified and capable of looking after her.



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    #64
    Fionne
    Registered Users Posts: 392 ✭✭Fionne


    It's an awful position to be in and I dread it happening to my own parents.

    If your dad refuses to go into a care home, then as far as I'm aware, he can't be made to go.

    Him being mobile and having dementia, which by its nature will likely get progressively worse, is a danger.

    My mother-in-law had dementia but managed to be kept at home for all except the final week of her life as she had very bad knees and so couldn't walk far at all, by the end she could just about get from her bed to a wheelchair. The switch for the cooker had to be disconnected to stop her putting on the oven when she was mobile as she would forget about it. She had HSE carers for a couple of hours a day and then private ones calling a couple of times in the day as well while her son was out at work. If she had been mobile and walking about, then this wouldn't have been enough to keep her safe, it was only because she was in bed 99% of the time that she was able to manage on that kind of routine.

    Things like a personal alarm are ok but even older people without dementia tend to not press them when they're in trouble. Had a neighbour just recently who fell upstairs and broke a bone in her leg, dragged herself downstairs to the landline rather than press the alarm she had around her neck. My MIL used hers like a servants bell, ringing it constantly if she wanted a cup of tea so it had to be taken off her in the end.

    Your dad not washing or changing his clothes might be because he doesn't want his daughter to do that for him, maybe he'd fare better with a "stranger" doing those things. Saying that, my Mam worked as Home Help and had one man who flat out refused to change clothes or to let her clean the bathroom despite it being in an absolute state. People are still entitled to make those decisions for themselves, you can't force someone to wash or even eat.

    Is there any way of creating a rota of people, between family, HSE carers and private carers, neighbours, etc so your dad has as many regular visits during a day as possible. Night time is the danger, they lose sense of what time of day it is, can decide to go to the shops or to Mass at 3am. Could someone stay overnight with him?



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    #65
    Pistachio19
    Registered Users Posts: 472 ✭✭Pistachio19


    Is there a possibility to get him sent from hospital to a nursing home for respite - tell him that its a step down facility before going home. That way he can go in for a couple of weeks and might find he actually settles there, has company and is happy to stay. It might be an option while you get carers etc in place for if and when he does come home. But the hope would be that he'd realise he is better to stay in the nursing home.



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    #66
    blackbox
    Registered Users Posts: 4,102 ✭✭✭blackbox


    Hi OP.

    I was in a similar position with my mother.

    She was physically very well, but her memory loss was worse than your father's.

    The real difficulty with her, like your dad, is that she wouldn't accept help from any "strangers" in her house. She could have stayed at home longer if she had allowed this. I honestly don't know the answer to getting someone to accept that they need help.

    Wearing dirty clothes isn't the end of the world - I presume you can leave clean things for him from time to time. I wouldn't worry about him falling in the river etc. It's very unlikely to happen, though I would be concerned that he might hurt someone with his car - is there any chance that it might have a breakdown and have to go for extended repairs? I'm sure you are finding that white lies are becoming normal. In the unlikely event that he falls and breaks a leg, his being hospitalised is no worse than going into a home. Pay no attention to his brother unless he is offering to look after him full time.

    I'm afraid I'm not much help to you but I am very sympathetic to your position. He doesn't sound to me like he needs to go into a home just yet but the day is definitely approaching.

    Remember to live your own life.

    A bit of practical advice is to see your solicitor about getting Power of Attorney. This will allow you to manage his finances. I left it too late and my mother was not competent to consent.



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    #67
    TheadoreT
    Registered Users Posts: 930 ✭✭✭TheadoreT


    Bit of a dementia related fall horror story here.

    https://x.com/classiccarguru1/status/1747858911347032074?t=1BsoQiWRUMVqoa2VotHPmw&s=08



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    #68
    Flinty997
    Registered Users Posts: 11,521 ✭✭✭✭Flinty997


    From experience... and my opinion...

    You do your best to keep your parents at home as long as possible. They do best at home where everything is familiar and they seem better than they are. But you won't realise this.

    But at some point they'll need to go to hospital. Which is all unfamiliar and their true condition is revealed. Sometimes this shock will cause them also to deteriorate further. Making it no longer viable to maintain them at home.

    Tbh OP you've been long past this point at home. Appreciate that you've had extra time at home. You're moving to the next stage now.



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    #69
    Annasopra
    Registered Users Posts: 40,814 ✭✭✭✭Annasopra


    https://www.boards.ie/discussion/comment/121631514#Comment_121631514

    Enduring power of attorney does still exist and it would in this case be possible if he is deemed to have capacity to appoint an EPOA.

    Sage advocates are not useless. They advocate on behalf of the person. In this case I would argue there is a need for an advocate for the person as there is disagreement about his future.

    Sage advocates will also have a lot of knowledge on the law.

    With regard to capacity etc legally it works like this

    If he has capacity he could at the moment create an Enduring power of attorney and also possibly even an advanced healthcare directive

    If he is deemed not to have capacity then it may be the case that he may to have a court appointed decision making representative. This can be a family member but may not be.

    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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    #70
    Annasopra
    Registered Users Posts: 40,814 ✭✭✭✭Annasopra


    https://www.boards.ie/discussion/comment/121631742#Comment_121631742

    Possibly yes it could come to that

    If the Hospital felt he couldn't be discharged home safely it could down the legal route but this is why its best to engage with the hospital.

    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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    #71
    Annasopra
    Registered Users Posts: 40,814 ✭✭✭✭Annasopra


    https://www.boards.ie/discussion/comment/121633992#Comment_121633992

    Nursing home options are explored

    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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    #72
    Worried Daughter
    Registered Users Posts: 19 ✭Worried Daughter


    @Annasopra thank you for your responses.

    I have outlined below a small bit of what I am dealing with.

    Dad has a chest infection now. I found out about his unwellness from my husband. I rang the hospital today. Unfortunately one of the less effective nurses answered. N."Your father is doing well ok". M. I believe he saw a doctor? N. Right. M. And he is taking antibiotics? N. He is doing well ok bye.

    😒

    Developments regarding his care: I spoke with a nurse on Thursday regarding a time for the family meeting and it went something like this: N. I'm not sure, we don't have a time yet.

    M. Do you know when you you will? I spoke with your PHN and Monday was agreed so I have arranged for that day to be free.

    N. One of the team isn't available.

    M. Ok. The meeting is the team's idea and it seems nothing can happen without them.

    N. That's right. Your dad isn't safe to live at home. He doesn't have the capacity.

    M. Oh has he had that assessment?

    N. Well it is in his notes.

    M. Right. So if you think he isn't safe at home where will he go?

    N. A long term care home and we need the bed.

    M. So it's really important we have the meeting then?

    N. I don't have a time.

    M. But the meeting is to discuss the options around his care? And you need the bed back but you don't think dad is safe at home but there is no discussion scheduled?

    🙄🙄


    I have a whole litany of miscommunications and lack of communication from the staff on the ward. I have been pulled from Billy to Jack and pushed to such a person and the other person. There has still been no communication from any member of the medical team.

    I have made an application to Sage because I feel so unsupported. So far what I have is a lot of nurses expressing their concerns and telling me that the medical team have concerns. And that's it.

    I am considering my legal options.



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    #73
    Worried Daughter
    Registered Users Posts: 19 ✭Worried Daughter


    https://www.boards.ie/discussion/comment/121641058#Comment_121641058

    The consultant has said he is isn't to sign anything legal until his capacity is tested.

    I am considering applying to be dad's decision making representative.



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    #74
    Annasopra
    Registered Users Posts: 40,814 ✭✭✭✭Annasopra


    https://www.boards.ie/discussion/comment/121644666#Comment_121644666

    Is there a medical social worker?

    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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    #75
    Annasopra
    Registered Users Posts: 40,814 ✭✭✭✭Annasopra


    https://www.boards.ie/discussion/comment/121644681#Comment_121644681

    Talk to a solicitor and decision support services. Make sure the solicitor is upto date on knowledge on the ADM Act.

    Just to say though if hospital are very insistent he should go home and you were insistent he shouldn't the judge could potentially appoint an external person as his DMR.

    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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    #76
    Worried Daughter
    Registered Users Posts: 19 ✭Worried Daughter


    https://www.boards.ie/discussion/comment/121644717#Comment_121644717

    I don't actually know that. I never thought to ask but I will now.



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    #77
    csirl
    Registered Users Posts: 281 ✭✭csirl


    Your Uncle may be a little dramatic when saying that your Dad might fall into a river, but a mobile person living alone with dementia is dangerous.

    I had a relative with dementia who dissappeared overnight and was found the folllowing day by Gardai walking in the right lane of one of the busiest motorways in the country.



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    #78
    Annasopra
    Registered Users Posts: 40,814 ✭✭✭✭Annasopra


    https://www.boards.ie/discussion/comment/121644874#Comment_121644874

    Might be helpful if there was

    The other thing is. The HSE nationally is under pressure to clear bed blockers. It's awful but your father would be deemed a bed blocker.

    You shouldn't let the hospital rush things.

    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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    #79
    HamSarris
    Registered Users Posts: 109 ✭✭HamSarris


    Dementia is progressive so he will need residential care at some point but if it's possible to get another year at home it might be worth it if helps his mental wellbeing. You also need to consider his prior will and preferences - is he one of those people that hated the idea of ending up in a nursing home?


    People often speak about how nursing homes will provide the best care, provide safety etc. Nursing homes carry hidden risks and of those admitted to a nursing home, most don't make it past two years. Given your Dad has dementia, there is an 80+% chance he will be prescribed an antipsychotic (from an audit of nursing homes in Cork) at the slightest sign he is agitated. Nursing homes do this to sedate patients, keep them glued to their beds and chairs which makes less work for staff and reduces the chance of a resident having a fall. It is a hidden form of restraint (chemical restraint). Unfortunately, HIQA are happy to ignore this practice of sedating almost every dementia patient even though it is against current policy on prescribing. Nursing homes should really be using psychosocial approaches to manage dementia but this requires time and effort for staff and it's quicker to sedate.


    Nursing home staff will describe these drugs as "settling" your father, like he is in some blissful state. In reality, these drugs deplete his dopamine so that he is less mentally and physically able to do anything. If your Dad continues to get agitated then the dose will be increased or a more severe drug prescribed (risperdone) until he is too unwell to put up any resistance. Antipsychotics have anticholinergic effects which accelerate dementia and it's common to see a big decline in a family member a couple of months after entering a nursing home.


    So if nursing home care is needed to avoid severe neglect then you have to make the decision. But if he can live a half-decent quality of life at home then it's better than a nursing home. Lots of risks can be managed in a home environment (uninstalling the oven and getting meals on wheels, tracker devices, pendant alarms).



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    #80
    the14thwarrior
    Registered Users Posts: 391 ✭✭the14thwarrior


    i'd like to see proof of

    https://www.boards.ie/discussion/comment/121645234#Comment_121645234

    don't believe tyhat80/90% patients are put on drugs as soon as they enter nh. its misleading, dangerous and untrue. i worked in four nu8rsing homes over the years. Never saw the like of the figures you are mentioning. and HIQA specificially check the ratios of patients to drugs, esp. risperioidone. sp.

    you paint a very bleak picture of nursing homes. fact is most people are quite ill when they go, or at a stage in their illness when they need medication, extra caution and help. of course they decline. some don't.

    having said all that, there are nursing homes I would not put my dog in, and I'm very vigilent on them. i speak from both parents in different nursing homes for years, and years. Public ones. best ever. and I waited till I could get Dad into the one i wanted.

    my advice stands - the hospital wanted my dad to go to respite "and if he liked it he could stay there" a nice private NH with ensuite and large TV (and no staff and you'd die in them beautiful rooms before someone knocked on them!!)

    I brought my father home with supports whilst i put him on the waiting list for the one NH I was happy with.

    my job is now to advocate and keep an eye on all they do, (and don't do).



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    #81
    ebbsy
    Registered Users Posts: 6,737 ✭✭✭ebbsy


    I have been in this situation and the best place for your Dad is a nursing home.

    Looking after somebody with this condition is for trained people who know what they are doing.

    I had similar feelings as the OP at the start but now I see the light.



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    #82
    Annasopra
    Registered Users Posts: 40,814 ✭✭✭✭Annasopra


    https://www.boards.ie/discussion/comment/121645320#Comment_121645320

    Yeah

    Nursing homes are something else. Private ones are money making rackets, on the other hand public ones can be great but can also be overcrowded (4 to 1 bedroom)

    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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    #83
    ebbsy
    Registered Users Posts: 6,737 ✭✭✭ebbsy


    https://www.boards.ie/discussion/comment/121635571#Comment_121635571

    Great point. Happened with my Dad.



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    #84
    ebbsy
    Registered Users Posts: 6,737 ✭✭✭ebbsy


    https://www.boards.ie/discussion/comment/121633992#Comment_121633992

    You might have to fight the hospital to get him into respite.

    From my experience they will just want to get him out of there.



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    #85
    Worried Daughter
    Registered Users Posts: 19 ✭Worried Daughter


    Thank you all for taking the time to read my posts and share your experiences and advice.

    I feel somewhat better.

    Mods you can close this thread now please.



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    #86
    NIMAN
    Registered Users Posts: 32,993 ✭✭✭✭NIMAN


    Best of luck



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    #87
    HildaOgdenx
    Moderators, Social & Fun Moderators, Society & Culture Moderators Posts: 6,461 Mod ✭✭✭✭HildaOgdenx


    Mod - Thread closed at OP's request. Thanks all who took time to give advice.

    OP, I hope everything works out well. If you want the thread reopened at any time, drop me or one of the other mods a PM.

    All the best

    Hilda



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