Help, Dad's dementia is going to kill him and me

[JPG1]

I realise that what I am about to say may upset some people, but, Dear Burf, I have long followed your struggles to achieve an acceptable quality of care for your Dad and they mirror so many of the struggles that we also faced.

So, I tread now gently on eggshells, for the simple reason that I have no wish to offend.

Any care home that accepts any person with dementia can only do so legally if they have declared within their registration via CSCI that they have sufficient/suitable/appropriate facilities and staffing levels and adequately trained staff to provide the level of care that any person with dementia needs. And that means today, and tomorrow and for the foreseeable future. They are not allowed to pick and choose only the relatively easy-to-handle residents. Dementia is dementia, yesterday, today and tomorrow. Yes, it changes; yes, it most often worsens; yes, it is unlikely to improve unless your surname is Saunders and you have connections with Guinness~!!~

Otherwise the care home should not accept any single person with dementia, neither for assessment, nor as a resident. Which leads me to question why your SW deemed it acceptable for this particular care home to be ‘used’ for the assessment process. Regardless of whether it is just a couple of miles up the road from you, which must be a plus surely, in the life and care of any person who cares, or who needs care. It would be the best thing for your Dad and for you, and indirectly (or directly, even) for your family if your Dad were to be living happily and comfortably closer to those who genuinely care about him, as you so obviously do.

That ‘comfort factor’ cannot be achieved overnight, nor within 2 weeks of assessment.

The good things in life take time, and they take even more time in the world of dementia.

It is a well-known fact that dementia is most often accompanied by the need (within the person with dementia) to engage in ‘unusual, unpredictable behaviour patterns, and uncharted-until-now territory’, uncharted perhaps within that particular person with dementia and their life-experience so far. How many times does any professional need to be told that a change of situation/circumstances/environment/face-at-the-door-carer/medication/ and so on causes ‘more confusion’ and more manifestation of that confusion? That does not disappear overnight.

Nor does the ability to cope with him/her/them appear overnight, within the care home staff.

As we say again and again and again, every single person with dementia may well be very very different from any other single person with dementia.

The question that I would ask of your SW and especially of the care home manager: is this the first time that a person with dementia has ever been placed for assessment in this particular care home? Is this the first time that a person with dementia has come to live in this particular care home? And if the answer is yes, then why was it accepted as appropriate for your Dad? And more importantly, is this care home registered to accept residents with dementia? Or are they planning to apply for a variation to their registration which would allow them to declare that they are able to cope with the demands of dementia.

I apologise, Burf, for this post of mine, but I feel very strongly about the situation you now find yourself in. I can do nothing to change that for you, or to help you directly with it, but I would merely wish you to know that it scratches more of my skin than you can possibly know or be asked to understand.

So I wish you well. Do not put up with the nonsense that is being dumped on you, hard as I know that will be, and much as I understand what you have been going through and still are going through.

I truly wish you well, and send my own personal energies your way, in the hope that you can achieve what your Dad needs and deserves.

.

 

[burfordthecat]

Thanks everyone, all your replies have given me strength to carry on the fight.

I have only just popped back on-line and I am overwhelmed. Each and everyone of you are just so kind, all of you have problems of your own but you take time out to help me with mine. Thank you.

Julie, Deborah and Hazel

I'm not sure that the wandering is causing the problem (but it obviously not helping) I think it is the fact that dad is always asking to go home and does not understand why he needs to be in there which it giving them more issues. At the moment dad is always very lucid in "real time", so much so that it would be difficult for anyone to spot he has dementia. It is possible that the assistant manager is being taken in by dad "in real time". I don't think she would say that lost mental capacity. However, there are lots of people who would say that he has.

Hi Tarika

You are quite right, I can't cope with dad going back home. The stress I would be under by not knowing where he is or what he is doing would completely destroy me, as I am at least an hours drive away.

Hi Joanne

Yes, the home is registered for dementia. With it being a local authority owned one, I believe that a lot of the staff are dementia trained. For my own visits they do seem to handle situations very well. Today, I noticed that two staff members were sitting having a break but were still at the end of the lounge to keep an eye out for any trouble. So far, they have been very happy with the way I have dealt with any other dementia suffers who have approached me and have commented that it was nice to see someone from the public who understood. Again, my knowledge has been learned from all of you so again I would just like to says thanks.

Hi Sue

Yes, I feel that the place is perfect for dad. That was my first reaction and it has not changed yet.

Hi JPG1

They are not allowed to pick and choose only the relatively easy-to-handle residents. Dementia is dementia, yesterday, today and tomorrow. Yes, it changes; yes, it most often worsens; yes, it is unlikely to improve unless your surname is Saunders and you have connections with Guinness~!!~

From my VERY limited experience of visiting CH, some do seem to be able to "cherry pick" the easiest residents. It is not fair, whilst I do understand that some people will not fit into every home is the awkward one always going to thrown back?

The question that I would ask of your SW and especially of the care home manager: is this the first time that a person with dementia has ever been placed for assessment in this particular care home? Is this the first time that a person with dementia has come to live in this particular care home? And if the answer is yes, then why was it accepted as appropriate for your Dad? And more importantly, is this care home registered to accept residents with dementia? Or are they planning to apply for a variation to their registration which would allow them to declare that they are able to cope with the demands of dementia.

Dad's CH is run by the local authority. They are registered for dementia and the staff do seem to be "attentive". They don't seem to be over concerned about the wanderings as they are now ready for it. They even said, that it happens quite often.

I apologise, Burf, for this post of mine, but I feel very strongly about the situation you now find yourself in. I can do nothing to change that for you, or to help you directly with it, but I would merely wish you to know that it scratches more of my skin than you can possibly know or be asked to understand.

So I wish you well. Do not put up with the nonsense that is being dumped on you, hard as I know that will be, and much as I understand what you have been going through and still are going through.

I truly wish you well, and send my own personal energies your way, in the hope that you can achieve what your Dad needs and deserves.

.

Thanks for your support. I am not giving up and I continue to fight until something is put in place for dad which works.

Love Burfordthecat x x

 

[Helen33]

Hello Burf

I just wanted to say that although I cannot add anything useful to help or comfort in your situation, I do read your posts and see that you are very well supported. I would like you to know that I am there in the background wishing you well and admiring you for all your attempts to get the best possible help for your father

Love

 

[burfordthecat]

Hi Helen

Thanks for your support.

Love Burfordthecat x x

 

[Heather777]

Hi

I'm not sure that the wandering is causing the problem (but it obviously not helping) I think it is the fact that dad is always asking to go home and does not understand why he needs to be in there which it giving them more issues. At the moment dad is always very lucid in "real time", so much so that it would be difficult for anyone to spot he has dementia. It is possible that the assistant manager is being taken in by dad "in real time". I don't think she would say that lost mental capacity. However, there are lots of people who would say that he has.

I can't really add anything but I did want to say your observation of your dad being in 'real time' is just like my mum. When you is in taking to medical professionals she seems to be really engaging in conversation and understanding it all. They think she has great capacity and how can I have ever thought her diagnosis of dementia was every true. They can go and have the same conversation in half hour and it is all new to her. It is VERY frustrating because the nursing home talk to my mum about being able to go home and she can't even walk. makes you want to scream!!

Heather

 

[Sandy]

Hi Burford,

I was really pleased to read the posts about the positive visit you and your family had at the care home and the interaction with the other residents.

I think that is something that isn't really mentioned much as one of the potential positive aspects of a good home - it can make you all feel like you are part of much larger group, where everyone has been touched by dementia in some way. And when it feels like you've been stuggling in near-isolation for so long, being part of a group that understands dementia is such a relief (like TP).

I read your comments about the assistant manager as her thinking that your dad could have the capacity to carry on at home with the correct care package. But as you say, she does not know your dad's full history.

You said that your father was getting bored in hospital. Is the situation better now that he's in the home? Is there much going on to engage him?

When you approach the assessment process, it would be good to look at the grey areas rather than just hoping for a black/white ruling of capacity/no capacity. I mean, your father says that he would like to live nearer to you. That seems to be a decision he has the capacity to make. How realistically he could assess his ability to live independently is something he may not have the capacity to assess.

What is going on with a medical assessment by a consultant psychiatrist? It seems a bit haphazard to go through this process of deciding your father's future without a full medical picture.

Take care,

Sandy

 

[burfordthecat]

You said that your father was getting bored in hospital. Is the situation better now that he's in the home? Is there much going on to engage him?

What is going on with a medical assessment by a consultant psychiatrist? It seems a bit haphazard to go through this process of deciding your father's future without a full medical picture.

Take care,

Sandy

Hi Sandy

I think that the CH situation is so much better for dad. Even this morning he said that it was nice having all these people (carers) bustling around. Gives him something to watch. As to things to do, the home has a lady who comes in every morning Mon to Fri. She is hoping to get dad doing some jigsaws later on this week.

A medical assessment by a consultant psychiatrist. Well, dad was last seen by his whilst he was still in the hospital. I did speak to him on the phone this morning. He has basically said that dad's CT scan shows that he is suffering from Alzheimers and as such will be offering him drugs, but does not want to start these until dad is settled, wherever that is going to be. and I need to ring him about 3-4 weeks after dad has been moved. Not sure that dad will ever be settled, he does seem to be a lost soul at the moment.

Love Burfordthecat x x

 

[lesmisralbles]

Hello Burf

Sorry we have not been able to keep up.
Computer was on the blink.
Just sending love.

Barb X & Ron ZZZZZZZ

 

[Sandy]

Hi Burford,

A medical assessment by a consultant psychiatrist. Well, dad was last seen by his whilst he was still in the hospital. I did speak to him on the phone this morning. He has basically said that dad's CT scan shows that he is suffering from Alzheimers and as such will be offering him drugs, but does not want to start these until dad is settled, wherever that is going to be. and I need to ring him about 3-4 weeks after dad has been moved. Not sure that dad will ever be settled, he does seem to be a lost soul at the moment.

The decision by the consultant that your father would be suitable for medication sounds like it could make the next stages a bit easier for you and your dad, in two ways.

Firstly, the consultant has indicated that your dad needs to be in a settled environment before starting on the new medication. Given your dad's history with the Pivotell dispenser, and the need to be monitored for side effects, it would seem a care home would be a better setting than home alone with occasional carers.

Secondly, if medication does work for your dad, he may be a lot less of a lost soul. It worked well for my MIL and she is now living contentedly in a residential home. The home does have an EMI unit, but with aricept, she is not yet at that stage.

Take care,

Sandy

 

[Canadian Joanne]

He has basically said that dad's CT scan shows that he is suffering from Alzheimers and as such will be offering him drugs, but does not want to start these until dad is settled, wherever that is going to be.

That statement is very confusing - part of what the drugs do is help settle a person a bit. I am thinking of the Alzheimer's drugs here. Your father does not seem to need behavioural drugs at this time, as all he does is ask to go home incessantly and get up in the middle of the night & turn all the lights off. Those aren't particularly challenging behaviours, in my opinion.

Hang in there, Burf, if you feel this is the place for him. And it does sound right - dementia-trained personnel, calm attitude to your dad's behaviour and handling things well. Maybe the shared room on the third floor will be okay until a private room becomes available. You never know, your father might even like having a roommate. Stranger things have happened in Dementia Land!

Love,

 

[Allypally]

Dear Burford
I've just been going through all the posts about your Dad. My Mum, a very fit 80 year old was diagnosed with Alzheimer's type dementia in February. She was living on her own in her own bungalow (she's been a widow for the last 16 years), but became very isolated and lonely and although she does not admit it I am sure she was not able to cope with her daily life. My brother and I noticed a steady decline in her memory over the last 3 years, but there has been a continued refusal to admit openly that there was a problem. In October she moved to live with my brother - it is not working at all. She wanders, has decided that my sister-in-law is the devil incarnate and there is a terrible friction in my brother's house which may evenually lead to the break-down of his family life (he has 3 children still at home). My Mum now wants to go home - but the CPN has stated categorically to her and to me that she would not be able to live independently. We are now looking for a care home and I have found one near where I live in Twickenham - whether she will go there is another matter, but quite frankly, I don't think she will have a choice given the circumstances in my brother's house. It seems that we all need to get to a complete breaking point before anyone is prepared to listen to us.

The problem is now how do we get her there? She is resisting all attempts. Although our situations are not exactly similar, I do appreciate the problems you are facing. I have recently been helped by reading a book called "Contented Dementia" by Oliver James which advocates a method of care devised by a lady called Penny Garner, called SPECAL care. I strongly advise you to contact them - google SPECAL and you will find their website. I truly believe that if this approach to dementia care is introduced in care homes with dementia patients it will transform the whole area of dementia care in this country. I am pursuing this avenue with vehemence..... Very best wishes with looking after your Dad.
Love Allypally

 

[Sandy]

Hi Joanne,

That statement is very confusing - part of what the drugs do is help settle a person a bit. I am thinking of the Alzheimer's drugs here. Your father does not seem to need behavioural drugs at this time, as all he does is ask to go home incessantly and get up in the middle of the night & turn all the lights off. Those aren't particularly challenging behaviours, in my opinion.

I hear what you're saying about, if the drugs work, they should make it easier to settle - that was certainly the case for my MIL.

However, I attribute some of the success of the medication to the careful management of the care home staff, plus our daily visits. We could all see that she was improving and not suffering any side effects.

The side effects of some AD medication can be quite serious. I believe that Sylvia has said that Dhiren had severe hallucinations. Other people have gastro-intestinal problems.

So, the consultant may be concerned that Burford's dad needs to be in a place where his medication can be carefully controlled and any changes in behaviour (positive or negative) monitored.

It sounds like the best place to try the medication might be in the care home where the assessment is taking place. It could be risky to return him back to his home, even with external carers, and then introduce the medication. If he deteriorated quickly, it would always be hard to tell which contributed more - the move back to a less-supported environment or side effects from the AD medication (I assume the consultant is talking about aricept or something similar).

Take care,

Sandy

 

[burfordthecat]

Hi Allypally

Sorry to hear that you are having such a hard time with your mother. With dad, it was "relatively" easy to move him from hospital into the assessment bed. But now he has decided that he feels fine and that it is time for him to go home. So the meeting on Thursday could well be extremely stressful especially if dad is told that he can't go home. One of my main concerns is that he may go really cross and try to escape. In that situation, I think that there will be little option other than to section him. This disease is horrible, you need to be able to explain to the sufferer about possible consequences of their actions, but you can't because they can't grasp what you are talking about. After all, there is nothing the matter with them, it is all of us talking rubbish who have the problem.

An interesting website SPECAL. I do agree that all people dealing with dementia need to have appropriate training.

Good luck with your mum.

Love Burfordthecat x x

 

[burfordthecat]

So, the consultant may be concerned that Burford's dad needs to be in a place where his medication can be carefully controlled and any changes in behaviour (positive or negative) monitored.

It sounds like the best place to try the medication might be in the care home where the assessment is taking place. It could be risky to return him back to his home, even with external carers, and then introduce the medication. If he deteriorated quickly, it would always be hard to tell which contributed more - the move back to a less-supported environment or side effects from the AD medication (I assume the consultant is talking about aricept or something similar).

Take care,

Sandy

Hi Sandy

I think that your quote summarizes my understanding why the consultant has delayed starting medication. You will no doubt remember all the problems that I was having with dad and his medication just prior to him being admitted to hospital. I really don't think that I could control dementia drugs successfully from afar. Just another thing to get totally confused over. In the last few days, dad was not even able to recognize his Pivotell. And this is a man who could live safely on his own with a good care package (In your dreams!!)

On a slightly different subject........how do I deal with dead relatives (namely my mum who has been dead for over 20 years) when dad speaks about her and asks how she is and does she know that he is in hospital.

Just before dad was admitted, he was asking about mum and when I said that she had died, he became very agitated, much hand wringing and telling me that I was lying to him and I was talking rubbish. Any suggestions?

Love Burfordthecat x x

 

[jenniferpa]

I think I'd be inclined to lie Burford - yes she knows, she can't come at the moment, so on and so forth. Well I might tell the truth once to see how he took it, but assuming it had the same result as before, yes I'd lie through my teeth if I couldn't get away with changing the subject.

 

[burfordthecat]

Hi Jennifer

Thanks for your reply. I'm getting quite good at lying.

BTW love your new avatar.

Love Burfordthecat x x

 

[jenniferpa]

Thank you Burford. It was me or the dog (and in case anyone's wondering, that's me ).

 

[burfordthecat]

Today, dad and I had a meeting about his future with the SW

Well, the long and short is that the meeting was good and bad. Good, because Dad sort of agreed to staying in a residential home on a 4 week trial basis. Bad. because the current CH have said they will not take dad on permanently. Their excuse being that the only room available is no suitable for me (being shared and on the third floor). Me thinks that is just a made up excuse, they don't want him because he is harder work that those who just sit.

Also, my brother has turned into a complete **** hole. He has said that under no circumstances will he agree to pay any top up fees and that SS will need to find a placement for dad which is suitable for him- without incurring any top up fees. I have found a really nice home just about 5 mins further up the road, from the current CH who have said that they should be getting a room free in the next week or so. The place is lovely - a block of converted stables set in its own private grounds, with views of fields from every window of the home. The difficult bit is that their weekly charge which means a top up fee of £90. Needless to say my brother will not even consider it. So, as I see it, left to my brother, dad will be put in some pit in the centre of a large city, because there are no top up fees. My brothers excuse is that he is mortgaged to the hilt and is paying for 3 children to go through university so can't commit to an opened ended contract to pay top up fees

Hubby and I have been discussing this, once I can stop spitting feathers for long enough, and it may well be that we just have to go it alone with dad's fees. I will be speaking to my SW tomorrow and she if she can either get dad's current home to accept him(which I doubt) or somehow get my new choice of CH to reduce their fees. I just can't believe that when this whole situation with dad's condition is bad enough, we now have family issue about paying fees.

Feeling really rather annoyed at the moment.

Love Burfordthecat x x

 

[ChrisH]

Hi Burford
You've been working so hard to get the best care for your dad and you really shouldn't have to put up with hassle from your brother. Like they say, you can choose your friends but you're stuck with your family. Being an only child has it's up-side sometimes as there's only me to make the decisions, but there's also only me to pay the bills. Is that £90 per week for you potential CH?

I posted my top-up agreement a couple of days ago. I'll have to do another one in a couple of weeks, I expect, as the CH will be putting their fees up by an extra £20 per week. The landlord of my clinic is also about to put my rent up (no idea by how much) and I'm begining to think I may have to close the clinic and go back to doing home visits only - which I hate - just to reduce my overheads so I can afford to pay the top-up. Mum would be absolutely horrified at the thought of me giving up the clinic because of her, but if I have to do it, I will as the alternative is 600+ mile round trips once a month and her stuck in some place with no other visitors and going downhill rapidly.

Falling asleep at the keyboard here so I'll catch up with you tomorrow.

Chris

 

[Skye]

Hi Burf

Aren't families hell?

£90 a week is an awful lot to pay for top-up, and it may be negotiable.

You could try having a word with the manager yourself and saying you really want your dad to go there, but can't afford that much.

I can't remember who, but we have had a member who managed to negotiate the top-up down to zero, but that's perhaps a bit ambitious. You should be able to get it down a bit, though.

Doesn't your dad own his own house, or have I got that wrong? If he does, the house will have to be sold anyway, and your dad become self-funding after the 12 week disregard, so it wouldn't be an open-ended commitment.

Just another problem when you've had so much to deal with recently.

I hope you can get something sorted out soon.

Love,