I am scared for my Dad

Worried Daughter

Hello,

I am in dire need of help. This will be a long post. I want to explain the situation and my worries.

My father is 80 years of age and has dementia. He lives alone with support from myself and some other people. He is able to get himself up, make tea, look after his garden, he knows the days he has to collect his pension and when his meals on wheels are to be delivered. Up until recently he has been driving short distances while accompanied. Daddy can still drive the car in to the back yard unaided.

They are some examples of his current capacity.

It's important to note his limitations. For quite some time now daddy hasn't been washing or changing his clothes. I have spoken to him about this but to no avail. He has been refusing outside help of any kind. I arranged for the public health nurse to visit him and he told her he didn't want any help.

So that was that. It was explained to me that a care package cannot be put in place if he doesn't consent. Ok. That's the way it will be for now. At the end of the day I want to protect the capacity my dad does have.

Two weeks ago I brought daddy to A&E on the advice of his GP. Daddy was experiencing some dizziness and so he was admitted and his been there since. There was some tweaking and changing of medication and he is right as rain again.

Due to daddy's dementia he had a difficult first two nights in hospital. He was extremely confused and also agitated. He is now on Seroquel. If daddy was at home he wouldn't need to be given an anti-psychotic every day.

I brought up the possibility with dad of him allowing someone to give him a hand and he said that would be ok. He said he doesn't mind if someone comes in, he said he feels perfectly capable by himself, but it's ok if someone helps.

So the application for HSE home package was made with daddy's consent. In the mean time dad's brother has been causing stress. I have always appreciated when he visits daddy but not the way he gets all worked up. His brother raises his voice, gets very irate, and in the past he would have gotten mad with daddy over God knows what and walked out.

Early last week I was chatting with a lady responsible for discharge plans. She was very encouraging and told me that she feels daddy will be absolutely fine at home. She said as long as the supports are in place daddy should be at home by the weekend (this weekend). This lady also told me that I am dad's advocate and his brother has no input and as long as daddy can make his own decisions then it will be whatever he wants.

I rang dad's brother to give him an update. He became very angry on the phone and told me that daddy should be in a nursing home. He shouted and swore at me and said terrible things.

He also rang the hospital and was abusive to a nurse caring for daddy.

Last week I spoke with a CNM to get an update and voice my concerns regarding daddy being unduly influenced. It was she who informed me of how dad's brother spoke to her team and that the rule now is he must be referred to a CNM if he wants to talk.

On Wednesday last I spoke with a nurse again on the phone. It was difficult to understand her but she said the medical team need to assess dad's capacity and review various reports, she also mentioned a family meeting. I became very upset. I said that I don't want a family meeting, that I want daddy's wishes respected.

On Friday I rang to get another update and figure out the logistics of dad going home. I have been visiting every day I can and taken time off work but that has now changed. Work is being awkward so I have to return.

The same CNM told me the medical team have concerns about dad going home. She also said she had a long conversation with dad's brother and he said he is worried daddy will fall in to the river or set the house on fire. That won't happen. Daddy does well in his own environment. He has a routine that he follows.

CNM mentioned family meeting again and suggested dad's brother attend. I said no. I also said that the Discharge lady I was speaking with had reassured me that daddy was fit to go home. The CNM told me that the medical team's concerns have nothing to do with his brothers input.

Ok so let's have this meeting. What about this evening? "No staff finish at 4pm" What about Monday morning? "No another meeting is taking place" What about Tuesday morning? "No such a person isn't available".

I am away with work Wednesday to Saturday so the CNM reluctantly agreed to it being Monday week.

I have a spoken with and applied to Sage Advocacy for an independent voice to support my dad. Both of us have a meeting with his solicitor on Tuesday regarding Power of Attorney. Solicitor has explained the limitations of this and I understand it may not even happen.

I explained to solicitor that daddy wants to come home and expresses this every day. I explained I'm scared he will be unduly influenced by his brother. Solicitor mentioned the possibility of me "holding the PoA over your uncle". He also said that maybe he is thinking that he is the one who has the most input and can be there for daddy as I live further away.

This really upset me 😥 I am the one who is over with daddy every day I can. I am the one trying my best to make sure he is cared for and his wishes are respected. My heart is breaking for him because he wants to go home. Nobody seems to understand. Sure there is talk of "your dad's best interests" but what good is being sparkling clean if you are miserable and sad ?

What good is being able to change your clothes if you are deeply depressed because of your surroundings?

I have engaged the services of a private home care provider and they will step in to help as soon as daddy gets home. I don't know what else to do and I'm sick with the worry of it all.

Thank you for reading.

TheadoreT

You seem to be the biggest issue here OP. He's simply a danger to himself when alone with that condition and while your loyalty to him is admirable you can't provide the round the clock treatment he needs and will need even more going forward.

People eventually adapt to new surroundings so I think the sooner you come to terms with that the easier it will be for everyone.

Deeec

Right first is don't let your uncle bother you. Ignore him!

I'm sorry to have to tell you OP that your dad probably does need to be in a nursing home for his own safety. From what you have said in your post he is incapable of looking after himself and you have work commitments etc which means you cannot be with him all the time. The care provided by the HSE will be very limited - maybe 1 HR per day may offered which is not enough.

Dementia is a horrible illness and unfortunately accidents can happen very easily to someone with his condition. I had an elderly relative with dementia and night time were most dangerous - he used to get up during the night and wander and not know his way back home, leave cooker on etc. In many ways he reverted back to being a child and needing the same level of care as a 3 yr old.

It is very easy to bury your head in the sand and think that he is best at home but for his own safety home is the worst place if there cannot be someone with him 24 hours per day.

You are not failing him - there are some very good nursing homes around.

happyoutscan

Same boat, but I'm being realistic and fortunately my elderly parent is in agreement and understands the need for a nursing home at this stage (stroke related falls). The mind is in great form but physically is a danger to themselves if they keep falling.

Regarding your situation, it's time for a nursing home. When a parent can no longer look after themselves the correct decisions need to be made that will benefit them by ensuring they get the care they need.

Not easy but you need to use your head, not your heart. Ask your father's care team for their advice and ignore the nurse saying he'll be fine. They just want his bed.

Have a read of the Fair Deal here: https://www2.hse.ie/services/schemes-allowances/fair-deal-scheme/about/

You are not going to be failing him, you are going to be helping him.

All the best OP.

NIMAN

Good advice so far.

I think you have to face the truth, your dad can't live independently any more.

We were in that situation last Xmas after my mother had a fall. She was in a&e for 3 days, before being admitted to a ward for a few days. She got very angry and aggressive for those days, as the pain and new surroundings played havoc with her dementia. She deteriorated a lot in the space of a week.

She was then moved to another non emergency hospital for 3 months to recover. This change of scene upset her again and her dementia worsened.

At this point the authorities were asking us to make a decision on her future. We were told she needed 24/7 care. We tried to work out how to do it between the 4 children. We realised after much deliberation that we simply weren't qualified enough to take it on, and started looking at care homes.

We got her into one in March 2023, it was tricky at first but she has been very content and happy for the last 7 or 8 months and there is no complaining at all now.

We know she is now eating properly, has someone around all the time, has company, can wander around the home, has entertainment etc. It beats sitting in a house on her own all day.

It was hard to admit that she needed to be in a home. A part of us thought it meant we had failed her, but in the end it was easily the best thing to happen to her. Her dementia is getting worse and this year might be the last she remembers us all, so we are glad she is going to spend it somewhere safe, warm and welcoming. She deserves to be comfortable in her final year(s).

airy fairy

Unfortunately I think your dad needs to have 24/7 care at this stage. Dementia can be unpredictable and while you say he is best in his surroundings, there is absolutely no guarantee that this will be the case in a split second.

I gather from your post that you assured the hospital that you would be there for your dad all the time, which isn't the case at all. I assume your uncle set the hospital straight on that matter which is why they changed their care and discharge plan for him. While it was wrong of your uncle to be abusive to nurses and get involved, I can only imagine it came from a place of frustration and wanting what is best for your dad. I mean, what has your uncle to gain by pushing your dad into a home?

There are some wonderful nursing homes around. Despite what you may think and read about some, most are there to benefit older people and to help them enjoy and live out their remaining time in safety. Activities, friendships and routine in carehomes can actually be beneficial for dementia.

I would suggest seeking out a care home for your father now, bed places are very scarce, instead of bickering with his brother and wasting precious time with your dad.

TheadoreT

Yeah I think Airy Fairy outlines the pertinent point above, what has your uncle or medical professionals got to gain from advising he needs this?

You're making this an us against them scenario and almost hitting conspiracy levels here by not understanding their obvious caring motives. I know we're in an age where people think their non medical opinions eclipse medical professionals but you need to snap out of it before your dad does serious harm to himself.

notAMember

If he is not able to wash himself or change his own clothes, then there is the risk of disease and infection. I know you don't want him to be sad, but if has lost the ability to do these things, he needs considerable help. You mention dizziness to the level of needing hospitalisation, and he lives alone.

I'm sorry OP, this is tough to deal with, but the truth of the matter is many of us have been here before. The later it progresses, the harder it is going to be for the adjustment.

Here's how this will work out... and this has very recently happened in our extended family. He eventually will fall, or cut himself, and at his age can easily die from a very small injury, unless he is cared for. It's like leaving a toddler unattended, it's just not safe or responsible at a certain stage. And as he still has a car, he could take a notion to drive while dizzy, and kill someone else too.

Yes, adjusting to a new home is traumatic, but honestly, the sooner it happens, the easier it is to manage. If you cannot have him in your own home, and look after him full time, then your options are limited.

If you are in the lucky position that care is available, take it.

Irish_rat

OP it looks like your dad needs around the clock support right now. you have two options - a nursing home or a live-in carer in his own home.

I know which one I would prefer.

Also the HSE supports should be there during the day.

It's worth considering when going that route

Deeec

https://www.boards.ie/discussion/comment/121617311#Comment_121617311

Also to add to Irish Rats post - home care provided by the HSE and private companies is not always reliable. They wont always turn up when they are meant to and the quality of care can be very questionable. There could be days when your father does not receive care at all.

ax530

Aside from your Dad's best care plan as I don't have knowledge on what is best for him. Get working on power of attorney anyhow that important.

I'm surprised reading this how hospital are dismissing you and your ideas for an older louder male.

How is it supposed to work? Do they usually arrange care plans with whoever visit or would it be done 'next of kin' type set up.

Have you any siblings? Does your uncle live with you dad ?

RoboRat

I'm not in that position yet, thankfully, but I can give you another perspective.

I worked for 5 years with a medical company that specialised in home care solutions amongst other things. You would be shocked at how many people slip in the bathroom, or have a fall down the stairs. Most people then look for solutions but the horse is already out of the stable by that time. The life expectancy after a bad fall with an injury such as a broken hip is quite short. We had many cases where the patient had passed away before they got the specialist equipment in, or died very soon after.

Around 33% of all elderly adults who have suffered hip fractures will die within a year, with even higher rates of death among people who have dementia. This is down to the loss of mobility, independence, loss of muscle mass, and circulation - there is a whole litany of consequences for something like a hip fracture that most people don't comprehend. There is also the danger that he may develop pressure sores if he is sitting a lot and not washing himself. These are extremely dangerous and agonising for those afflicted with them.

You also need to realise that with dementia, your father not only poses a danger to himself, but also to others. What if he went for a spin in the car and knocked someone down? What if he left the oven on and burnt the house down, along with a neighbour's house... or a fireman perished trying to fight the blaze?

I understand you want to keep him at home, but sometimes that is not feasible, especially if there is nobody to give him the round-the-clock care he needs. There are many great care homes and many residents are reluctant at first, but after the initial bedding in period, they thrive in these environments. You just need to find the right one and whilst the news was awash with scandals, there are many great homes that offer fantastic care.

It's a difficult decision and I hope that my words offer an angle you may not have considered.

Ezeoul

OP, I truly feel for you, as I have been the daughter in your shoes with an elderly parent with dementia, I know how hard this is to face.

But I have to concur with the other posters that the time has come to face the reality that your Dad needs round the clock care. If your family can't provide this, then a nursing home is the next best option for him. Dementia is a progressive illness and he is only going to decline further. He is not going to improve or get better. You are only delaying the inevitable.

While he is a hospital inpatient, they can carry out the necessary evaluations and risk assessment, that need to be done to measure what stage he is at. They do this all the time. If they have concerns, then you have to be prepared to listen to them.

Please don't think of this as letting him down in any way, it is what is best for him, in the long run. My mother spend the last few years of her life in an excellent nursing home, and if anything, she regained a little of herself with the stimulation of regular activities, plenty of company, regular meals and they also had beautiful gardens. She was very happy there - happier than the last two years she spent at home.

I wish you all the best.

November1979

Hi Op.

I signed up to comment on your situation as I'm going thru the same situation with my dad who has dementia, minus the issues with your uncle.

You have some tough decisions ahead. You're caught between a rock and a hard place, if your dad goes home he could fall and hurt himself etc, if he goes to a nursing home he might not settle in and deteriorate.

It's not a surprise to see his agitation in hospital, it's too common with dementia. Seroquel should help him get thru this and worse case he's need it after hospital discharge.

Unfortunately there's going to be a learning curve sooner or later on what meds your dad will need.

Hospital admissions, falls, infections etc can escalate dementia in my experience.

You already are dealing with health professionals, my advice is for you to get as much help and support from these as possible. Some are very good, some are brilliant. (They may also be more inclined to side with you if there's further conflict with your uncle as they'll see you are genuine and want the best for your dad).

Ask about respite or day care for your dad. A good PHN may help persuade him to do a day a week in a local nursing home if available. There's less pressure on your dad as it can be suggested as a day out, our local home were brilliant and my dad was in great form after a day visit... for a man who would be very agitated at times.

It would also give yourself and himself an idea of how he'd cope on a longer stay.

Some people are more suited to going back to their own home and I not siding one way or another.

If he goes home you have to ensure care plans are in place which looks like they are.

You can make things easier by installing some hand rails, motion lights, maybe getting him a personal alarm. You need to know if his condition worsens, if he starts to wonder for example. Good contact between you and his doctor is needed as meds may need to be tweaked or more care needed.

Also, fair deal scheme was suggested. Definitely start the application process, it's so complicated and can take months to get everything you need... even if you know what you need! I've been thru the process twice.

Every county should have a fair deal office to advise, but you'll have to chase up valuations, bank statements etc.

I was told once you are approved you have a year to actually start using the scheme but suggest you confirm this. Its one less worry if his health deteriorated in 6 months.

Anyway, best of luck. Mind yourself too...

volchitsa

Hi OP,

I completely understand your dilemma, but I think you need to be realistic about dementia: some months ago I met a neighbour from the street where I grew up, who now has dementia, living with her son: I met her in a local cafe, having lunch with two friends. She seemed fine - I even asked my mum (who still lives opposite her) if she was sure that X really had dementia as she remembered me fine and was able to have a normal conversation.

That very weekend, or maybe the weekend after it, she was found by passers-by out wandering along a busy main road in the dark, in her night clothes, despite not even living alone. I forget whether her son hadn't been aware that she went out or whether he was out for a few drinks that evening. But he's entitled to some life for himself, so I'm not criticising.

Point being that dementia is unpredictable and requires specialist care. People coming in for a couple of hours a day just isn't enough to ensure the person's safety. And it gets worse, not better. Don't wait until something terrible happens.

spaceHopper

My mother has Parkinson and she very much doesn’t want to go into a nursing home. I have been under so much stress to help her say at home and we have a team of carers but it’s very difficult. Her mind is full intact so I have to do my best to respect her wishes but it’s getting very hard for me.

You situation is difficult but right now you are in the best position to do something because he is in hospital and they want to discharge him to something, either his own home or nursing home. So you will get the most help and support now. As soon as he’s discharged that all could change.

You definitely need the family meeting and you need to listen and to ask to some pointed questions. Number one is “is this a safe discharge” . If possible your Dad should be there, have you other siblings? They should be there to. Who are the other people who support him? Should they be there? I’d suggest you text your uncle about it. Something “I know you mean well and are looking out of them when you lose your temper with me or dad you makes it impossible for us to work together for his best interests. I am his next of kin and if he can’t have the final say then it falls to me.  If you fight with me I have to exclude you. So can we work together please? He’ll blow up but let him think about let it settle in. However if your uncle is getting angry with your dad, should they be around them?

At the meeting you need his geriatrician, occupation therapist and social worker there, they will best placed to tell you what his abilities are and what the risks are. The reality if it is that if he goes home he has to have HSE care. He need help dressing himself and washing or at least to be told to do it. Also to make sure he’s eating properly. I’d suggest a private local care who will also clean and wash his clothes – you still have to have the HSE too.  The HSE mostly use agencies, if he had one or two cares then he’d get to know them but the  realty of it is that, people often don’t stay long in the same job and they also get moved about so he could at times have different cares.  That could be problematic for him. If you are right, today he could go home but dementia can and often does get worse very quickly over a matter of two or three months that all could change. Something could easily go wrong so the reality is he might be better off in nursing home, either in his local are or yours

lilydonoghue

I’ve been where you are. You cant see because you’re emotionally involved but dementia gets worse and it can be a sudden decline. Our dad had to go into a home because the hospital wouldn’t discharge him to home even with the full home care package. My dad didn’t even recognize his own house after a short while. You will be letting him go for his quality of life. You are doing it for him not to him. I wish you well.

Xterminator

Hi Op

on the one side are his wishes, and then there is what's best for him. there comes a time when they are not the same.

You are obviously a dedicated loving child who shares a deep bond with Dad. . Im sure you can recognize you are emotionally invested in dads care. However there comes a time when you need a dispassionate outlook on what is best. Listen to the professionals. That's not the same as agreeing with everything they say. But they have your fathers best interest in mind too, and you should listen carefully before dismissing their valid concerns.

best of luck.

scheister

Hi Op,

You are in a hard place. I was caring for a parents at home for nearly 20 years. My mother was left Brian damaged after a stroke. We did all we could at home for her but personally my life was put on hold as a result. She finally went into a nursing home in October 2022. It was a tough call and it took her time to settle in but she did. Their were nights when i was living their every time I heard something drop hoping she was not after falling as i knew a fall the wrong way would kill her.

It hard be hard trying to look after what they want personally and what they need medically. But a stage does come where the Children need to be the parents and ensure they are looked after medically even if it is not what they want personally. When he settles into the nursing home and with the right care it can increase their quality of life and ensure their remaining years are a lot less stressful. It will also allow you to spend time with him as his daughter and not his carer.

Worried Daughter

Thank you all for your input. Some of you are obviously compassionate people and I appreciate the kindness in your responses. I am in a more rational headspace as I write this. The fear has lessened.

I don't have siblings and my mother passed away a few years back. Balancing my father's contentment and peace with his safety is very difficult. I would dearly love if it never got to this stage, if I could split myself in two or four, if I could turn back time. Here we are. Dad is a strong willed individual who has refused all help, even refusing to attend certain medical appointments. As I mentioned in my OP he has come around to the idea of having a person visit to give him a hand, but this is with the attitude of yeah ok but I'm fine as I am. So we have been trucking along and dad has been happy out. I am available when he needs me and I visit regularly. His neighbours are wonderful and we do have huge support from one person in particular.

Yesterday when I visited I was chatting with the nurse looking after dad and she suggested I visit this morning to meet his medical team and find out who is who. I did this but was told 'the team won't be available etc etc'. That is an example of the frustrating nature of this. I am not a hysterical person but I stood in that corridor and cried as I tried to explain my fears. Luckily I had the opportunity to speak with someone who was very clear and concise about everything and there was no ambiguity. Knowing that dad won't be pressured or influenced in any way helped me tremendously.

I have experience with people who live with dementia and alzheimers. You meet one person with the illness, you meet one person. Yes there is the cognitive decline, confusion and out of character behaviours that are features but the individual is still present. Special care is required and progression can happen quite quickly. I do know this and I know the day will come when daddy loses who he is and no longer recognises me. Right now he is himself, sociable and funny. I'd say he has them all mithered in the hospital with his whistling and singing and everytime a child appears its 'hello little boy' or 'hello baby' 😆

For now I will trust that he is being cared for properly and consider where to go from here.

Now I will address some points:

@airy fairy Nowhere in my post did I mention bickering. Up until my dad's brother attempted to convince him to go against his own wishes, abused me, the nursing staff, and went behind my back regarding some things, I had an ok enough relationship with him. What I think of him now is irrelevant because my dad can express his own view of him. I made it clear to the team that I would not be available all of the time so I am not sure why you think otherwise. Of course dad's brother has nothing to gain from wanting daddy in a nursing home. Why would he? One can have their view but being a bully about it isn't acceptable.

@Theodore01 'snapping out of it'. Out of what? Hoping that your parent is cared for in a kind and compassionate way? Concern? Trying to do the right thing but not knowing what that is?

TheadoreT

Snapping out of your delusion that he's safe on his own OP. You've somehow managed to read 20 odd posts all in full agreement( as well as his brother and medical experts) and it still doesn't seem to have registered with you.

humandecline

Hi OP, Im in the same position. 32, living with mother with Dementia. She's 69 so younger than your dad but she needs around the clock care. Can be very expensive. I looked into live in carers, didn't work out although might work for you. I think its AL homecare it is called, you can get a live in carer from abroad. Still works out around 30k a year roughly or more when I was doing the calculations previously.

The way I work it now, I have mam going to local day centres 4 days a week 9am - 3.30pm. Bus collects her in the morning, they come in the house, bring her out to the bus, same in the evening. They mind her all day make sure she's fed, has social interaction. Keep an eye on her. She didn't like the idea at first but now a few months on its a huge part of her routine, she loves it and needs it. She would be totally lost without it. Reletavily cheap cost. 13e a day roughly I think it works out at. Obv depends where you live and the day centres around but maybe do some research and see.

Outside of that get on to your public health nurse. I have care hours free from the HSE now. One hour every morning and 30 mins in the evening. Which is great. Mornings and evenings are the worst times for dementia for my mam and I think that can be the general trend on speaking to others.

The other hours that I am not in the house I pay cash to a relative and I have one or two local people that I pay also so I always have options. Thats how Im dealing with it at the moment and keeping her out of a nursing home with round the clock care. It is still expensive but that's the best most economical way I found of doing it.

Also invested in some tech around the house. RING doorbell and indoor cameras. You can see what is going on in the house from your phone at all times. You can speak through the indoor cameras without your dad having to answer anything. Your voice can just talk to him in the house anytime from the phone. These are great. Also inexpensive. 50e I paid per camera and I think the subscription is 100e for the year. Highly recommend. Peace of mind for you and you can watch your dad at all times.

Also I am looking into getting locks for the doors you can lock and unlock remotely from your phone also. They sell them in Harvey Norman around 170e. I would look into those too. Next thing I might get if they are good. I haven't researched too much.

Your dad probably does need round the clock care though, these tech devices can only help so much. Give you peace of mind, but your dad really needs people around 24/7 I imagine. Alone are also a good charity. They call weekly and check in with phone calls, also offer grants and tech at discount prices. I would look into them also. They give grants to renovate the house if you need hand rails, new bathroom etc. I haven't done any of that but I know they offer it.

Carers allowance etc are options to look into if you want to care yourself and take a break from work. Go to citizens informations and look up carers benefit, allowance and there's another one I can't think of. They may help you too. Anything else I can help with let me know

airy fairy

https://www.boards.ie/discussion/comment/121620843#Comment_121620843

Nowhere in my reply to you did I mention the word bickering or how you were interacting with your uncle. Kindly read over my post, which was written in the most courteous way to you possible.

Worried Daughter

https://www.boards.ie/discussion/comment/121621246#Comment_121621246

"I would suggest seeking out a care home for your father now, bed places are very scarce, instead of bickering with his brother and wasting precious time with your dad" That is where you mentioned the bickering.

I would love if my dad's brother would pull with me rather than against. If we could sit down and have a chat and figure it out. Now is the time to come together and not create conflict. It's hard to read that I am bickering when it absolutely isn't the case.

,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,

"I gather from your post that you assured the hospital that you would be there for your dad all the time, which isn't the case at all. I assume your uncle set the hospital straight on that matter which is why they changed their care and discharge plan for him. While it was wrong of your uncle to be abusive to nurses and get involved, I can only imagine it came from a place of frustration and wanting what is best for your dad. I mean, what has your uncle to gain by pushing your dad into a home"

This section was what I responded to when I explained that no I did not tell the hospital I would be available all of the time.

Now we are bickering 😆

Worried Daughter

https://www.boards.ie/discussion/comment/121620946#Comment_121620946

I posted for some guidance, and to hear other people's experiences. Rest assured that I am reading all the posts. Unfortunately given the overwhelm I feel and the backwards and forwards regarding what to do I am still struggling. I will get there.

Rubberchikken

In a.nursing home your dad while cared for 24/7 can still refuse meds. Can still refuse to change his clothes or be cleaned. It's a right he has.

If he is happy in his home and safe then putting him into a nursing home may not be the best thing for him at the moment.

He doesn't need his brother bring an argumentative attitude into his home. I can't see how this man can be allowed to call and do this.

If he is worried about his brother then stopping his nonsense and instead engaging with the Op to agree the best care for her father would be time well spent.

Op I realise you are trying your best in difficult circumstances. You obviously love your dad. You will get differing opinions from different professionals. And it's bloody confusing.

You need to talk to someone who has no agenda and only your father's wellbeing in mind.

Best of luck

marilynrr

You situation is difficult but right now you are in the best position to do something because he is in hospital and they want to discharge him to something, either his own home or nursing home. So you will get the most help and support now. As soon as he’s discharged that all could change

Have to agree with the above from @spaceHopper

I have no personal experience with this in my family so I am open to correction here but I have seen other peoples frustrations trying to get more support caring for their family member or trying to get them to go into nursing homes or even trying to get them to go to hospital when they need to go. And many of those people would have started out like you, determined to stick to their family members wishes, but eventually the situation becomes impossible and unsustainable and dangerous. The issue then is that the family have hit their limit but can't actually do anything.

Currently he's in hospital and the medical team are expressing concerns about him going home but you want to bring him home, you could end up in a scenario where you're expressing your concerns to them about the fact he's still at home, and they're saying that there's nothing they can do if he refuses to go into hospital or a nursing home.

Up until my dad's brother attempted to convince him to go against his own wishes, abused me, the nursing staff, and went behind my back regarding some things, I had an ok enough relationship with him. 

You seem to be making out that he's the bad guy in this scenario. I'm sure in the vast majority of families there are disagreements about whether to try their best to stick to the family members wishes or whether they would be best off in a care home.

There's no right or wrong, or good or bad guy and the one who tries to uphold the family members wishes isn't the correct one. You said your uncle expressed concern to the medical team that your father would fall in the river or set the house on fire. Those are pretty distressing concerns to have, your own attitude to those concerns was "that won't happen". You have to acknowledge and accept that there is a risk of those things (or other things) happening but if you're shutting down your uncles concerns I can see why that would make him go behind your back etc. He probably feels the same way about you as you feel about him. I see you said that you'd like to sit down and have a chat and pull together and work it out, which is great but you just might need to try to adjust your mindset to see that he's coming from a place of concern, not malice.

Here we are. Dad is a strong willed individual who has refused all help, even refusing to attend certain medical appointments. As I mentioned in my OP he has come around to the idea of having a person visit to give him a hand, but this is with the attitude of yeah ok but I'm fine as I am.

This will obviously be a concern for the medical team too. He could have agreed but whether he actually accepts people coming in will be another story.

NSAman

OP I understand this situation all too well. I understand how difficult it is and the frustration you feel with the system. As a family we are dealing with (hate that phrase) our elderly mother, that is ALL my siblings and it is exhausting. Doing this single handed is no joke.

First of all, you have to do what is right for him. I think we all understand that is your intent. Elderly people do better in their own environments i.e. their homes. If the support structure is there to enable that, let him be. You have to be the judge of that. We have been dealing with medical opinions for almost two decades, not all advice for firstly our Dad and now Mam have been adhered to. Doctors differ etc……

You sound like you are a strong advocate for your Dad, good he needs one. Stay strong! Just make sure that you yourself are taken care of, you will need help lots and lots of help. If that becomes too much, then the time is right for additional help, I.e. Nursing home.

All you can do is try, he sounds like a wilful man. That’s good for the time being. Try to explain as you have that someone is coming in for his assistance, he will be annoyed at first. Elderly hate change and new people coming in to their lives, it breaks the independence. However, when it becomes the norm and they see the benefits it all changes. Dementia is such a difficult diagnosis to deal with for him AND you.

talk to everyone, community nurse, occupational therapists, physiotherapist, his doctors, etc. Find out all the information needed in relation to nursing homes finance, etc.. etc… like I said it’s exhausting. Make your own mind up after having all the facts.

Stay strong, do your best and never ever think you didn’t do enough.

Pistachio19

My father didn't have dementia but he wasn't able to properly look after himself after my mother died. We organised carers to come in via the phn and he was given a half hour visit twice daily. We got a cleaner to come in also. He didn't want anyone coming in but we organised it regardless as he needed someone to organise breakfast and lunch, set the fire. Despite being fully cognitive, his physical mobility declined and we then organised a nursing home. He suggested it but the kind he wanted was one where he'd still be able to come and go as he pleased and keep his car. This wasn't practical at all so he went into a regular nursing home. It wasn't pleasant for him or for us to get to this point, but at the end of the day we knew he was warm, fed regularly, and most of all safe. Sometimes we have to override the wishes of our ailing parents in order to keep them safe. How would you feel if your father had a fall at home during the night and wasn't found until the next morning by carers? That is how we had to think. 24 hour care is very costly but if you can afford it, of course its an option. At this point it doesn't sound like your dad should be on his own.

Worried Daughter

@NSAman, I do have a good support system. My husband is amazing and I have a few good friends. It's more the mental load I find difficult, the knowledge that when it comes to dad's care it is just me.

@Rubberchikken Dad would remain quite wilful regardless of where he is. So far since being in hospital he will change his clothes and wash for some staff and not for others. He still won't do so for me.

What I do notice as a positive is the level of interaction he is having. Chatting with the other men and the nurses is really good for him.

@Pistachio19 Of course dad having a fall or something terrible happening while he is home is not what he or I wants. I am trying to look after his physical and emotional self. A nursing home would mean I wouldn't have any worries about his safety but I would worry about his happiness and contentment.

Would he fall in to a deep depression and fade away?

I don't know. We something have a tendency in life to confuse our care for a person with concern for ourselves. I think so anyway. It's important to be able to stop and ask who am I doing this for really? Is it so I no longer worry, not spend money, not run around and be tired dealing with it all. Is it so I don't feel guilt or grief.

When it comes to my dad's care I am doing my best to not let how I or anyone else feels enter in to it.

@pista

Deeec

https://www.boards.ie/discussion/comment/121628996#Comment_121628996

Everyone knows you want the best for your dad. You seem to want him to remain living at home - the reality is carers won't be reliable to care for your dad around the clock. Possibly the best option would be for you and your husband to move in with your dad - that's the only way you can ensure that your dad with dementia is safe.

Worried Daughter

https://www.boards.ie/discussion/comment/121629021#Comment_121629021

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.

Deeec

https://www.boards.ie/discussion/comment/121629423#Comment_121629423

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.

Worried Daughter

https://www.boards.ie/discussion/comment/121629519#Comment_121629519

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.

peacefullore

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.

TheadoreT

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.

Worried Daughter

https://www.boards.ie/discussion/comment/121629935#Comment_121629935

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.

Annasopra

https://www.boards.ie/discussion/comment/121621764#Comment_121621764

I agree with this. The SAGE advocate may be the best person to advise independently.

Annasopra

https://www.boards.ie/discussion/comment/121630275#Comment_121630275

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?

Worried Daughter

https://www.boards.ie/discussion/comment/121630390#Comment_121630390

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.

Ezeoul

https://www.boards.ie/discussion/comment/121629423#Comment_121629423

@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.

the14thwarrior

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.

Worried Daughter

https://www.boards.ie/discussion/comment/121630635#Comment_121630635

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.

Annasopra

https://www.boards.ie/discussion/comment/121630570#Comment_121630570

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?

Deeec

https://www.boards.ie/discussion/comment/121630570#Comment_121630570

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.

Annasopra

https://www.boards.ie/discussion/comment/121630635#Comment_121630635

I have read this thread and I would be very slow to judge someone's capacity based on this thread alone.

Annasopra

https://www.boards.ie/discussion/comment/121630779#Comment_121630779

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.

Worried Daughter

https://www.boards.ie/discussion/comment/121630955#Comment_121630955

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.

KateSphagnum

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.

Worried Daughter

https://www.boards.ie/discussion/comment/121631181#Comment_121631181

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.

Ezeoul

https://www.boards.ie/discussion/comment/121630937#Comment_121630937

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.