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Discussion in 'Legal and financial issues' started by underwood, Oct 9, 2015.
Underwood, Heads up ..have sent you a private message.
Hi Sue, who said he had advanced dementia?
Far from having rose tinted glasses, my husband and I realise this commitment is not going to be easy, anything but. However at present my father is to quote him 'In hell'.
We will never be in that place, we may feel tired, frustrated, useless, dejected etc. but we will never be in this 'Hell'.
People have children every day of the week, do they all realise at the time just how much raising a child will take out of them? the anguish it will cause? the sleepless nights? the changing of the nappies? or do they love them? and accept that with this love comes a commitment and a promise for as long as they are able?
I am quite sure that when you eventually let your father go into a care home, it was at a point that he didn't really realise, it probably upset you more than him, he probably settled really well. And as you say, you could once again be his daughter. My father has not been given this chance. He is aware, he is unhappy and he is in Hell!
Hi underwood. I can fully understand your desire to have your father at home with you. Putting my husband in a home was the worst thing I have ever done.
Just one or two points sprang to my mind after reading your post.
Your father says he's in hell, but people with dementia are notoriously unreliable about what they feel and what they want. They tend to live in the past, so his perception of the world today would be something different. Hell, maybe.
Looking after children is completely different. Children grow up, dementia patients just get worse....and worse..
Whatever stage of Alzheimer's your father is at ( and stages run into one another, some are never seen) he will only get worse. So more and more of your time is spent caring for him to the detriment of all other parts of your life.
I looked after my husband for about 10 years, so I'm another one who has been there, done that. However, I only have myself to deal with, no parents or siblings. You do have these problems, and they have to be accounted for.
Please dont jump on me for raising these issues, as you seem to have to virtually everyone else. This is a discussion forum, not an argument shop! We have dealt with these issues, so can offer experience. Many of us , myself included, have had carer breakdown, and believe me, I wouldn't wish it on anyone!
However, best of luck whatever the result.
Please Underwood, do not make assumptions about other posters' experience, especially beginning "I am quite sure"
Your posts are being read carefully and responded to thoughtfully by TPers who are trying to understand and offer support and who are fully aware that we can't have the full picture of your family's situation.
All of us wish for the best outcome for all of your family.
The written word can often be misunderstood, I have done it a number of times on here and I may be doing it again! Underwood's father has not yet been diagnosed, she wants to at least try and care for him and why not. I went into this caring with no idea what to expect and friends/family were telling me how bad it could get and I did listen but it was what I wanted to do, am still doing. My situation is different as I have no one blocking or interfering, in fact siblings were encouraging me all the way. I do get the "I told you so" comments and have cut myself off from some family members who have said this once too often.
I use this web site to clear my mind of everything that is rattling away in there and also to let go of anger, resentment and just pure frustration.
Just wondering if you have taken any legal advice from solicitor or Citizens advice.
Can I ask what your parent's marriage was like before they were ill?I wonder why you and your husband are so out of kilter with everyone else over what's in the best interests of your parents.I would be very reluctant to separate a married couple by 200 miles,especially when there is a strong possibility they might not be able to travel.As others have said many people with dementia seem unhappy,I think they lose the capacity for happiness tbh.Chances are your father will be equally unhappy if you move him.And at the end of the day your parents are married,they made that choice,your mum might not be doing things as you would like but please don't judge her motives.Has it occurred to you that as well as being ill she is probably frightened and exhausted?
That's what puzzles me too.
Underwood's original request was for legal advice.
This is a forum for people with dementia, their families and carers.
So we naturally read any post with our background of dementia-related experience.
To take one tiny example, if you look at the last few lines of Underwood's first post about how her father is dressed in the care home --- how many of our dads, husbands, grandads who once wore smart jackets and trousers now wear joggers and jumpers? My dad does. But not to humiliate him.
Those of us who responded did just that.
Responded to what we read on the page.
Point taken, and my sincere appolgies if I have offended anyone. It was not my intention.
I originally started this post with long story cut short. I'll expand a little.
May this year, my father was sleeping quite a bit and had memory problems, he could hold a conversation but some words escaped him and he substituted them for others. He was mobile and active.
June he had a fall, had blood and urine infection causing dilerium. As of mid September there was no way he could be let out of hospital as he was deemed medically unfit due to the delirium. Hospital stopped his exercises and he has not exercised since, cognitive state has deteriorated. Not exercising he was put on laxatives, which gave him no control over his bowels and this distressed him. Catheter was kept in, despite delirium, and he was deemed incontinent, even though every time he wants a pee, he tells the nurses. He is told he has a catheter - This upsets him!
SS basically told me he was moved into the care home as he was bed blocking. NO exercise, catheter and laxatives. Exercise is over and above general care and would cost more - I am not sure if my family even realise this. As we have been told he'll never walk again, and then we are told he may.
He has never been diagnosed with dementia, or can they even agree on what dementia he may have and we are the only ones who ever have conversations with him. Everyone else says he is a vegetable.
My father tells my husband and I he is in Hell, I said to him Dad you are somewhere between sleep and awake, why don't you try and get some sleep. 'That's just it xxmexx I'm not, I'm in hell, my mind is all over the place and I can't stop it. On the same day he asked me to be quiet as the nurses were talking about him' They're going to do something with me xx me xx and I need to know exactly what it is, so I can say no' - It turned out they were discussing his move to a care home 3 days later he was admitted.
We have visited, he is deflated, lost and begging us to get him out. 'I shouldn't be here'. As soon as we say we can't he cuts out into his own little world, I will say come on Dad we've come a long way to see you. He gently says xxmexx will you please go, you've let me down. When we were asked to leave a quiet room so that a meeting could take place, he put his feet out of the wheelchair to try and stop us pushing him into the communal lounge. 'I don't want to be here take me away to xxxx. I can't Dad, Then ****** off and just leave me alone.
He is never nasty, frightened yes, unsure yes, looking lost and abandoned yes. Does he remember conversations yes. 4 weeks ago he asked me to leave after telling me he just wanted to give up as there was no point. We left, but I told my husband I couldn't leave him so depressed. We went back 20 minutes later he looked at me and said xxmexx I asked you to go.
So he has short term memory. But our input is not allowed no one has conversations with my father. And as we are the only ones we are liars.
Am I frustrated?, yes i am, if I come over harshly and critical of advice I am sorry. But you have to understand, all we are getting from the powers that be are what's in your father's interest. My mothers health dictates what my father's best interests are. All proceedures which by law should be followed have not been. No one is to blame though! we have yes but your mother can't manage. We say that has nothing to do with my father, your patient is my father, yes but your mother is not well etc. etc.
BUT we also know that my father is a fighter and this time it is he who needs help. He has told us he can't do it by himself.
He is aware of the family rift, he has told us! ' Let them play their games'.
5 weeks ago he started talking and I tried to say something 'xx me xx please don't interject, it takes so much energy to talk like this' he proceeded for another 5 minutes and was exhausted.
So maybe I headed my thread wrongly, this forum is a world of experience all in one place, the doctors do nt know what dementia he has, perhaps some of you may have had experience with this form.
Once again if any of my posts have caused offence, I am genuinely sorry.
I really can identify with all you say about Dad's deterioration,I have seen both my parents go downhill following hospital stays.It is well documented that those with dementia don't do well in hospital,I don't think the elderly I'm general do well.Also they tend not to make up all the ground lost when they are discharged.I can also,to a certain extent,understand your frustration with your mother's attitude.I wish I had a pound for every time I've told her to be more patient,not challenge,it's not his fault etc etc.The bottom line was she was losing her husband and she was terrified.Suffice to say we had Mum's funeral last week,Dad is still with us despite being 12 years older.
We all know and understand that you want to look after your father as you think this is what's best for him. However, you need to learn to see things from other people's perspectives too. Whatever your feelings towards your mother and how she treats your father are, she is his wife and her health matters. If you took him to live with you, that would separate the two, and I am not sure who apart from you would see this as being in his best interests. Yes, he says he doesn't like the care home. What would you do if he came to stay with you and wasn't happy either, saying he wanted to go home? Going home for some people means their childhood home or a general place of safety. I am not saying he would say that, but with people with dementia (and we are agreed he has some form of it?), everything is a possibility. They can be very unpredictable in what they do or say and I am wondering how much you understand about the condition. One of the suggestions you made was to have your mother and father stay two weeks at a time every so often. This would be hugely confusing for someone with dementia. They need stability, and at the moment I am not sure how much you are allowing him stability where he is now, with your constant promises to get him out of there. People have tried to tell you not to do that but you don't want to listen. You seem to forget that while your desire to look after him at home is genuine, it alone is not the deciding factor in this scenario. Other people like your mother or professionals in a best interest meeting do have a say too.
Look, we are really trying to help you, but you need to see the different opinions on the situation, the concerns we are trying to raise and also your own behaviour. No offense but you are quite pig-headed right now and don't want to hear anything that doesn't agree with your point of view. If you want to succeed in this, you need to calm right down, get your views across as professionally as possible without throwing accusations around and be open to dialogue. Otherwise the powers to be (and your mother) won't listen to you. And you need to get them on your side or you won't stand a chance. They are not interested in family politics, just in what's best for your dad, and yes, for your mother, as she counts too.
I just wanted to say Underwood that only two weeks ago my dad went into a home not because his Alzheimer's was bad enough for carers at home but mainly because it was causing distress and upset to my mum and because the Mental Health team and Social Services felt that he wasn't getting the help and care that he needed at home and that mum's health was suffering. It has distressed me very much that he has had to be taken away from the bosom of his family earlier than we wanted but where he is now we know he will be cared for in a way he wouldn't at home especially as none of his children are close by .
I wouldn't say that he has settled in fact at the weekend he was wiping away tears and I find that hard to say and write but I know that at the end of the day this will have happened sometime in the future no-one could care for him on his own 24/7 and that is despite times when he just seems like my dad again and talks quite normally. It saddens me when he is 'normal' and sad and I wonder what the hell he is doing in that place. How could this be? But sometimes family members cannot see the real and the whole picture. I love my dad to bits too but leaving him with my mum, despite her love for him was actually hurting them more than having them together.
I have to say I did feel very pushed into the decision at one time and tried to seek out a way of getting dad back. He was taken from us abruptly and put into assessment when we thought it wasn't necessary. It seemed we had no say and I didn't know where to turn. I became very defensive of my dad which is a totally normal feeling I guess. It is horrible when it seems you cannot help the one you love but I do feel that we are helping him now even though I have to contend with him trying to leave the home with me. At the time the authorities just seemed like the enemy.
I haven't really got an answer for you. Its one of the hardest things I've ever had to do putting dad in a home. I just hope that one day despite your mother's words and apparent ignorance of dad's feelings that you will find some peace in your heart for both of them. I wish you well.
I can feel your sadness and pain snowygirl but thank you for demonstrating that, in some circumstances, there is no choice whatever a loved one might have wished or even promised previously.
Well said Underwood about raising children
I would like to think that people with dementia (whatever stage) have a voice and that the voice is listened to. We don't dismiss children, we don't dismiss adults with serious illness, we don't dismiss young adults or those with mental health problems so please let's not dismiss the voices of those with memory loss. The very least they deserve is to be listened to.
I want people to listen to me and how I feel and what I want when i am old and lose my memory. I am still me!
We can listen to them, Fizzie, but when they want to carry on driving long after they are capable of driving, we need to intervene, and that's just one example. We don't let two year olds out on the streets on their own, even if they want to, and dementia renders adults equally vulnerable, except that a two year old alone on a street at night would hopefully be taken to safety. An adult could wander into danger with no-one realising their vulnerability. These are extreme examples, but what I mean is that people with dementia don't see the reality of their situation, and someone has to make decisions for them. It is a progressive disease and the further on, the more input from others is required.
It is important to offer choices, where possible, but sadly as time goes on, their choices do diminish.
Just my opinion.
Yes I agree with that too Sleepless but I don't think Underwood is considering extreme and unsupervised activities - I could be wrong. I think we can listen and give them a voice without leading them into danger.
Dementia is not just about memory loss,that's the easy part.Dementia is about incontinence,hallucinations,aggression,the breakdown of a personality,the gradual loss of a much loved mum,dad,husband,wife.
What I mean, Fizzie, is that the person with dementia can say they want a certain thing to happen, without really understanding the whole picture.
Like not wanting to live in a care home, but not really understanding the situation that took them there.
I used driving and wandering as examples because they crop up so much, and with both, it is difficult to get the person to understand the situation, because they believe they are still good drivers, or know how to walk home to Birmingham say, even if they are in Brighton.
I agree, I too have cared for and currently look after someone with dementia and I work in and out of care homes and other places of care. I do agree but every situation is different for all of us and I still believe that there are voices that are not always listened to
Hi Tin, thanks for the support. I do hope you and yours are well.
I have sort legal advice from Help the Aged, The Alzheimers society help line, both after hearing the FULL story, put me in touch with their own legal department. Advising me that My father's rights were definately being disguarded. They have told me that to date I have done all the right things.
Something cropped up and I spoke with the OPG who have told me to chase up things and get back to them, as they are not happy, with the full situation.
I have told them all that I love my mother!! and am not out on a bitter vendetta. Just for clarification, incase any one thought otherwise.
Have not been to citizens advice as I thought the MCA would be better known by the above, more so than CAB - may be wrong there.