Crisis Point after 9 days in a care home

[Malalie]

I'm so sorry Elle - you sound as though your heart is breaking. Remember that it is Dementia that has forced you to make these decisions - as the caring and responsible daughter that you obviously are, you had no other choice. If you had not stepped up to do the best for your Dad, he could have suffered serious injury, or died of hypothermia waiting outside the bank by now...... What else could you have done?

I hope you are able to find a more suitable place soon - you never know - when Dad is somewhere secure where he can wander round to his hearts content, he might settle a bit better. Hopefully, the staff will be much more switched on as well, and may be able to overcome problems without some of the drugs. Do continue keeping your diary so that you can show the new home what's been happening.

A big hug from me, and good luck with finding a better home.XX

 

[love.dad.but..]

Thank Amy, I suppose I just feel let down by the Care Home he is currently in and they seem to be making out that my dad is some sort of monster who they are now drugging to keep calm and they want him out asap.

Oh Elle...what a sorry state of affairs. The care home are out of their depth because they most likely regardless of what you were told or they thought do not have the dementia expertise to handle what is a common challenge with dementia. Like you I had visions of finding dad a lovely small home from home
dementia care home down a little country lane and the reality came home bluntly when I was told by 2 homes that before a day assessment could handle dad's wandering agitated pacing and trying to get out only to be told on collecting him that they were turning him down. I too cried those tears for me...for dad..who apart from that and strong resistance to personal care was the gentle and polite soul inbetween. Dad didn't get as far as needing medication because the home he went to had proven strategies that were tried...not always successful...but he just about got away with it. He was however getting close to being given notice whilst during a long phase of becoming incontinent where he would pee in very inappropriate places and very often...this gave me no end of worry and sadness lots of tears at feeling helpless to find a solution or make dad understand which of course was impossible ...and never imagined I would ever wish him to decline so he would move that stage ....which of course he eventually did. So during very tough times at home and in his NH I changed my attitude and instead of wishing what if...perhaps I can influence some things .....I completely blamed dementia for every decision that I had to make...especially if it was a decision that felt so wrong and upsetting for me...for my pre dementia dad...but importantly so right for his well being and being cared for in the right place for each stage of this horrible illness. I didn't ever let my dad down and neither are you.....you are trying your absolute best to get him the care he needs...and on his own at home where he is at risk and vulnerable where you will continue to be worried is not the right place for him now. Dad was always self funding and I looked at all the homes and placed him so I have no experience of SW involvement but perhaps someone else on here can advise you but whether self funding or not doesn't the SW have to take responsibility of finding a suitable care home for a challenging vulnerable at risk pwd when he has been given notice and refused by others?

 

[70smand]

Thank you 70smand. I just feel very sad that it seems to have come to this so quickly without really giving him a chance to accept and calm down himself, but I suppose if they feel he is a risk to himself and others then they need to take action. But I can't say I like it or I am happy about it, it's just now filling me with so much guilt.

I took care of dad's personal care before he went into the home and I found the best way to deal with him was like you would a child, don't ask, do they want a wash or change of clothes, I just got everything ready and told him we were going to do it and he would always readily accept it and he would happily assist me, I did the top half, he took care of the bottom half, so he was capable of assisting, it's just some historical arthritis that would cause him a few issues in his arms that you had to be wary off.

It's too late for the home he is in now, they are quite adamant they want him out asap. So I'm now under pressure to find somewhere else that are willing to take him.

I looked at loads of homes but in the end I didn’t have any choice because only one would accept him with his history of challenging behaviour at the local authority rate as we didn’t want to get him settled only to find him moved when his savings ran out ( which was 8 months) so I sort of felt grateful for that! The trouble was that he was fine when my mum and I visited as we could see his mood and knew his triggers and how to turn his mood but when we weren’t there he tended to wander and get into trouble.
A year on and he has deteriorated but I see other residents like he used to be, especially one poor man like your dad who doesn’t see he has anything wrong with him and wants to go out all the time- I think he is bored so mum and I talk to him and he usually calms down with a chat, but he now has 1 to 1 and the staff take him out for walks to the shops, because he tried to escape by kicking the door in. It was all just pure frustration though and so terribly sad.
It’s horrible that medication is felt needed as it really should be the last resort, and I have continually have had to fight to stop them over sedating dad, but I guess that are trade off for him not hurting anyone.
Hopefully if the trazadone helps they won’t need the lorazepam as well.
I don’t know what to say about the search for care homes, I just pray something comes your way xx

 

[campervan21]

Oh Ellie sending a hug, thinking of you and your lovely dad xx

 

[MaNaAk]

Thank you 70smand. I just feel very sad that it seems to have come to this so quickly without really giving him a chance to accept and calm down himself, but I suppose if they feel he is a risk to himself and others then they need to take action. But I can't say I like it or I am happy about it, it's just now filling me with so much guilt.

I took care of dad's personal care before he went into the home and I found the best way to deal with him was like you would a child, don't ask, do they want a wash or change of clothes, I just got everything ready and told him we were going to do it and he would always readily accept it and he would happily assist me, I did the top half, he took care of the bottom half, so he was capable of assisting, it's just some historical arthritis that would cause him a few issues in his arms that you had to be wary off.

It's too late for the home he is in now, they are quite adamant they want him out asap. So I'm now under pressure to find somewhere else that are willing to take him.

Dear Elle,

I'm still struggling to believe that this home is supposed to deal with dementia patients. I feel for you because dad and I are going to be in the same situation. At the moment I don't have any carers for dad because he was aggressive towards them but I am hoping that respite and an increase in donepezil will help.

I also get very tearful sometimes so I am sending hugs to you

MaNaAk

 

[Elle3]

I'm so sorry Elle - you sound as though your heart is breaking. Remember that it is Dementia that has forced you to make these decisions - as the caring and responsible daughter that you obviously are, you had no other choice. If you had not stepped up to do the best for your Dad, he could have suffered serious injury, or died of hypothermia waiting outside the bank by now...... What else could you have done?

I hope you are able to find a more suitable place soon - you never know - when Dad is somewhere secure where he can wander round to his hearts content, he might settle a bit better. Hopefully, the staff will be much more switched on as well, and may be able to overcome problems without some of the drugs. Do continue keeping your diary so that you can show the new home what's been happening.

A big hug from me, and good luck with finding a better home.XX

Thank you Malalie, I really need the hugs today.

I am hoping tomorrow I can pull myself together, shake off this sore throat and cold that seems to have just grabbed hold me yesterday and hung around today and just get on with finding dad a new care home.

I think what got me today was the email from the SW, it just sounded so heartless and from being told the last thing should be medication for dad, suddenly he's on 2 drugs prescribed by this Mental Health team. It makes me wonder what the home told them to assess dads needs in that way and I think I do need to get dad away from there asap as I'm beginning to resent their interventions now. How do I go back from this?

 

[Elle3]

Oh Elle...what a sorry state of affairs. The care home are out of their depth because they most likely regardless of what you were told or they thought do not have the dementia expertise to handle what is a common challenge with dementia. Like you I had visions of finding dad a lovely small home from home
dementia care home down a little country lane and the reality came home bluntly when I was told by 2 homes that before a day assessment could handle dad's wandering agitated pacing and trying to get out only to be told on collecting him that they were turning him down. I too cried those tears for me...for dad..who apart from that and strong resistance to personal care was the gentle and polite soul inbetween. Dad didn't get as far as needing medication because the home he went to had proven strategies that were tried...not always successful...but he just about got away with it. He was however getting close to being given notice whilst during a long phase of becoming incontinent where he would pee in very inappropriate places and very often...this gave me no end of worry and sadness lots of tears at feeling helpless to find a solution or make dad understand which of course was impossible ...and never imagined I would ever wish him to decline so he would move that stage ....which of course he eventually did. So during very tough times at home and in his NH I changed my attitude and instead of wishing what if...perhaps I can influence some things .....I completely blamed dementia for every decision that I had to make...especially if it was a decision that felt so wrong and upsetting for me...for my pre dementia dad...but importantly so right for his well being and being cared for in the right place for each stage of this horrible illness. I didn't ever let my dad down and neither are you.....you are trying your absolute best to get him the care he needs...and on his own at home where he is at risk and vulnerable where you will continue to be worried is not the right place for him now. Dad was always self funding and I looked at all the homes and placed him so I have no experience of SW involvement but perhaps someone else on here can advise you but whether self funding or not doesn't the SW have to take responsibility of finding a suitable care home for a challenging vulnerable at risk pwd when he has been given notice and refused by others?

Thank you love.dad.but. I don't feel so alone when I read that others have had similar experiences and that things do work out in the end. My dad is also self funding and I kind of thought his money might last him a few years, but considering that dad's care needs seem to have escalated, it looks like the costs could also be escalating which means funds won't last as long as I first thought, especially having to pay for 121 care by an agency carer. So I now need to be more mindful of maybe choosing LA funded homes as the last thing I need is being in the situation we are in now of having to find dad yet another care home in a couple of years time. By pure luck I seem to have an acquaintance who works for NHS funding and she has asked me to contact her to see if she can help with funding if dad continues to require 121 care, so I might give that a shot.

The SW is involved due to the fact I don't have POA for dads welfare and she has said if I can't find a new home for dad within the next week she will find a temporary home for dad until I can find one. But that would mean more disruption and yet another move for dad and that is the last thing I want.

Today has been emotional due to receiving an email from the SW that upset me, especially about the meds and some of the things the care home is saying. But hopefully after a good wine induced sleep, I will pull myself together tomorrow and just get on with trying to do the best for my dad.

Take care.
Elle x

 

[Elle3]

I looked at loads of homes but in the end I didn’t have any choice because only one would accept him with his history of challenging behaviour at the local authority rate as we didn’t want to get him settled only to find him moved when his savings ran out ( which was 8 months) so I sort of felt grateful for that! The trouble was that he was fine when my mum and I visited as we could see his mood and knew his triggers and how to turn his mood but when we weren’t there he tended to wander and get into trouble.
A year on and he has deteriorated but I see other residents like he used to be, especially one poor man like your dad who doesn’t see he has anything wrong with him and wants to go out all the time- I think he is bored so mum and I talk to him and he usually calms down with a chat, but he now has 1 to 1 and the staff take him out for walks to the shops, because he tried to escape by kicking the door in. It was all just pure frustration though and so terribly sad.
It’s horrible that medication is felt needed as it really should be the last resort, and I have continually have had to fight to stop them over sedating dad, but I guess that are trade off for him not hurting anyone.
Hopefully if the trazadone helps they won’t need the lorazepam as well.
I don’t know what to say about the search for care homes, I just pray something comes your way xx

That's my dads problem, he's not used to being told he can't do something, plus he's fed up and bored and he's so used to just being able to go out when he wanted and pottering about his home, of course he's going to try and do something about it and he succeeded.

The care home lead me to believe when I first visited there that they would accommodate dad wanting to go out and that they could take him on walks etc and that they could keep him occupied as they said they had had other residents just like my dad in the past. I'd also mentioned him not going to bed and they said that also was fine, they wouldn't force him. Maybe them using the word 'past' should have set alarm bells as they have tried nothing to work with dads obsession or to help him or distract him which has really disappointed me. Since visiting my dad there, I have witnessed 2 residents weeing in corners, one getting very angry and verbally abusing and physically attacking a carer. Another constantly opening doors and setting off alarms and one that keeps trying to take their clothes off, but they seem fine with them.

The medication thing for me is what I find most upsetting and I feel powerless regards it due to what the care home is saying.

 

[Elle3]

@Elle3, I have just read from the beginning of your thread. You did and have done the right thing in trying to find residential care for your Dad. From what you said on your first post on this thread, he was in terrible danger and at risk constantly. Anything could have happened had he remained alone at home and you would have blamed yourself then had it done so for not doing something sooner. You have made the best decision in a bad situation where there are no concrete answers or cures. None of this is your fault. None of it. Your Dad is ill and it is the illness and your (and others) concern for his safety that has prompted all the choices you have made and all of them have been right. Because those choices have not yet worked only means that another, different choice has to be made, not that the original decision was wrong. The feeling of losing your Dad is not because he is in that care home or any care home, it is the dementia causing that loss of the person he was. It is a heart-rending grief to feel. Ambiguous grief. I have not read back through any previous posts, but if you haven't yet read about it, either googling Ambiguous and Anticipatory Grief or looking at the Alzheimer's Society's fact sheet about Grief, Loss and Bereavement may help a little. I have pasted the link at the end of my post.

My Mum went in to emergency respite for 3 weeks last year. Within 24 hours she had deteriorated in to someone that I no longer recognised. The nursing home was o.k., although they relied heavily on drugs for the residents and they could not cope with her because she was awake all night and so immediately prescribed sedatives She didn't wander like your Dad as such but would become very distressed. It was quite a clinical but very efficient place. At that point, I needed to make the decision for my own Mum to be in permanent residential care as I was too exhausted then to carry on. Long story short, I brought Mum home for another 6 months instead. She could never have stayed where she was. At the end of those 6 months I was so unwell as to be unable to continue caring for her at home and had to find a permanent placement. My Mum was not self-funding and so there were no options available other than those offered by SS at their funding levels and they couldn't find her a suitable place, although for different reasons to your Dad. I am explaining all this because Mum is now somewhere that suits her, an EMI registered nursing home that is homely and suits her that came up at the last minute when I thought all was lost. The building itself is run down and shabby in parts as it is an old converted house, not modern like the previous home had been, but it suits her and how she has lived her life. The staff are friendly. Mum is not on any drugs for the dementia. She is doing o.k. It has not solved Mum's dementia, nothing can, but she is safe and warm and content at times. The agony of trying to find her somewhere and the worry and anxiety - like you, I wished I could just run away. I think most of us on TP have felt like that at some point. Places come up literally overnight in care homes, sadly, that is the nature of them, often someone has to die for a place to become available for someone else. Somewhere suitable may well come up at any point and with your SW's help and a correct assessment of his needs, he may well be o.k. elsewhere, given time to settle. Please do not blame yourself any more for any of what is happening to your Dad. He is so lucky to have you and to be so loved by you. You can not make him well. You can not stop the disease progressing. You can only do your best and you are doing that. Here is the link I mentioned earlier:-

https://www.alzheimers.org.uk/download/downloads/id/1796/factsheet_grief_loss_and_bereavement.pdf

Thank you Carmar for reading my thread from the beginning, that must have taken a while. Today has been emotional and I got upset at the tone of the email from the SW and the decision to give dad drugs, probably based on what the care home told them, as they would get little sense from dad. It made me feel powerless and like I'm letting my dad down.

I accept his dementia makes him not understand and do things he wouldn't dream of doing if all was well and I still stand by my decision that he needed professional care, it's just not turned out how I imagined and hoped it would be and I feel let down by the care home as I'd tried to be as honest as possible with them about what dad was like when they assessed him and they told me it wasn't a problem and they could cope.

It just upsets me now that in less than 2 weeks they have given up and I am having to describe almost a different person to any new possible care home and what is now being written into his care plan is there because of their inability to cope with dad.

 

[Elle3]

Oh Ellie sending a hug, thinking of you and your lovely dad xx

Thank you.
Elle x

 

[Elle3]

Dear Elle,

I'm still struggling to believe that this home is supposed to deal with dementia patients. I feel for you because dad and I are going to be in the same situation. At the moment I don't have any carers for dad because he was aggressive towards them but I am hoping that respite and an increase in donepezil will help.

I also get very tearful sometimes so I am sending hugs to you

MaNaAk

Thank you ManNaAk. Well when you start looking for advice on a care home etc, by the time I get this all sorted I just might be an expert, lol! But I will definitely be there to give you support, without this forum I really don't know what I would do. x

 

[DianeW]

I just want to tell you that there are care homes that are like home from home, my Uncle was in one in the WA8 area around 4 years ago and he was looked after very well, though he didn’t have dementia one part of the home did have dementia residents.

My husband works in a care home in the FY8 area, and the stories he tells me are just wonderful, it’s a smaller type family run home, the residents are of mixed needs some with dementia but not sure of stage.

The staff really really care for the residents and they for them, my husband although not a carer also goes above and beyond and loves every minute of his shifts.

They have some wonderful times, film afternoons, with sweets, crisps, sherry or whisky etc whilst watching the many favourite films.

I am sorry to waffle but I just wanted you to know there are really good homes around, and I so hope you find one for your Dad and he settles well.

 

[Tin]

Only a small contribution from me. When you visit these homes, it would be a good idea to take someone with you. While you are being given the 'grand tour' your companion can take in other things, you know, just look and listen at what's going on around you.

 

[Scriv]

Elle, my heart goes out to you, it really does. My relative went through 2 care homes who could not deal with him plus a sectioned hospital assessment and we turned down places at 3 homes which had a EMI unit before we found the one where he is now - which is wonderful. There are some super ones out there. I so hope you find the right one for him. xx

 

[Elle3]

Elle, my heart goes out to you, it really does. My relative went through 2 care homes who could not deal with him plus a sectioned hospital assessment and we turned down places at 3 homes which had a EMI unit before we found the one where he is now - which is wonderful. There are some super ones out there. I so hope you find the right one for him. xx

Thanks Scriv, the problem is I've been told I've got a week to find one or the SW will choose a temporary one for dad until I find one. BUT I am now full of a cold and feel dreadful and I've not left the house for 2 days. Just what I don't need. Elle x

 

[Scriv]

I have sent you a PM with a website to try for homes in your area, Elle.

 

[DollyBird16]

Oh @Elle3 bless you, just what you need a stinking cold. I feel for you.
Snuggle down and rest up, best to get rid rather than it carry on for weeks. X

 

[campervan21]

Hope you can rest and get better soon x

 

[Elle3]

I just want to tell you that there are care homes that are like home from home, my Uncle was in one in the WA8 area around 4 years ago and he was looked after very well, though he didn’t have dementia one part of the home did have dementia residents.

My husband works in a care home in the FY8 area, and the stories he tells me are just wonderful, it’s a smaller type family run home, the residents are of mixed needs some with dementia but not sure of stage.

The staff really really care for the residents and they for them, my husband although not a carer also goes above and beyond and loves every minute of his shifts.

They have some wonderful times, film afternoons, with sweets, crisps, sherry or whisky etc whilst watching the many favourite films.

I am sorry to waffle but I just wanted you to know there are really good homes around, and I so hope you find one for your Dad and he settles well.

Thank you DianeW for your message, apologies for not replying sooner, I meant to, but then I got side-tracked. It's lovely to hear about the home your husband works in, I agree there are good ones out there.

I thought I had found a good care home, I did, it is good, it was recommended to me and I had to agree it was a real home from home, it's small and the staff are lovely and really care too.

Unfortunately though it's my dad that is not suitable for this home, due to his challenging behaviour and his inability to understand why he is there. They just can't handle him and that is why they have said he needs to be moved.

Unfortunately so far as I've seen, the more suitable EMI homes that deal with this challenging behaviour seem more like institutions than home from home, cold and clinical and the residents appear to have no life, which I fear could make dad worse, many are also poorly rated on the CQC reports. However, if they continue to medicate dad which is now making him a bit calmer but incontinent, he will just end up like all the other residents asleep in a chair or in bed.

It seems that this is the only answer for challenging residents which is such a shame, they are still individuals who just don't understand that they have a problem. Like my dad said to me when we first got there "I can't stay here, it's full of old people" and later he's told me "They are all crazy". He doesn't see himself as old or crazy and he just doesn't understand why he's been locked up with them. I think we would all feel the same in his situation.

 

[DianeW]

I totally understand the difficulty you face, and agree it is likely only the larger specialist homes that will be able to cope with your Dad’s behaviour.

I wish you well and lots of luck coming your way, I am sure you will find a lovely place for your Dad x