Mum - Currently in rehab, guidance on next steps please

[Rich 3]

Hi All,

I would be grateful for any advice/ experiences on any of the areas detailed below please. My Mum is currently in a second stint of rehab having been in hospital twice since last summer due to falls at home. She is due to finish her current stint of rehab shortly and I am keen to have some more definite facts around what happens next and the options available to her. My mum has Alzheimers and Vascular Dementia. During her last stay in hospital without my knowledge her Alzheimers drug (donepezil) was stopped - and this had a profoundly adverse effect on her state of mind. After weeks of battling with the various NHS depts this drug has been reintroduced and there has been a marked improvement in her condition. The questions I have fall under the categories below:

1) Review Meeting with Social Workers and Occupational Therapists - Wednesday 14 January 2015

- We have a meeting to discuss mum's current state and her ability (or not) to try living at home again (the alternatives being short /long term care)
- Who has the final decision? We are not sure that mum is ready/or will be ready to go home at this stage but the OT's will be pushing to discharge one way or the other as the NHS are picking up the cost.
- Mum has been suffering dizzy spells and has had several falls - we wonder if this is due to the increased Alzheimer's medication which has only been in place for 2 weeks and hasn't really had the time for any full side effects to become apparent. The delay in this medication being administered was down to inefficiencies in the NHS system.
- Do you think it would reasonable under these circumstances to ask for an extension to the rehab period until the full affects of the increased drug dosage are known?

2) Short Term Care -v- Long Term Care

- Mum is indecisive on whether going home or short/long term care would be the best solution for her, and from our view it is also unclear - it has been suggested that mum may benefit from short term care (which I believe can be up to 52 weeks). I understand this would allow mum to experience a care home but also give her the option of returning home (on the basis that the property would not have to be sold at this stage) which may be a useful route under the circumstances. Who can decide / agree if short term care can be an option in this case, and would we have a say in where she goes? (as this could end up being her permanent home).
- If a unanimous decision were to be made that my mum would go into short / long term care, how long do we have to find a suitable placement for her - bearing in mind it is not recommended for people with Alzheimer's to be constantly changing their environment? Certainly the various homes that we have viewed already appear to have waiting lists.
- My understanding with long term care is that as my mum will be self-funding, the property would likely have to be sold straight away - short term care would circumvent this for an initial period until it was established if a care home environment was right for my Mum?

3) Needs Assessment

I understand that it is critical that this takes place before any further decisions are made, and that I can/should be present and have sight of the finalised report. In addition, I believe that if we are unhappy with any of the content as POA holders we can challenge this. Please confirm if this to be correct? Whilst this Needs Assessment is being undertaken, can we expect my Mum to continue under the 'rehab' arrangement?

4) Financial Assessment

- I have been advised by Social Services that it is not normal practise to carry out a financial assessment until after a decision has been made that the patient will be going into short / long term care. This makes it difficult to plan and understand the financial implications in advance. Is it your understanding that what I have been told is correct? It is difficult for us on this basis to know the implications of the different fees relating to the homes we have looked at.

5) 12-week Disregard

- Please confirm that this will be effective (for either short or long term care) for the first 12 weeks of my Mum's care fees. It is my understanding that this is not "free" in so far as my mum would be expected to contribute via her Pension Credit and Attendance Allowance income, etc. Is this correct please?

6) Contracts with Care Homes

- I am aware, that there are some things to look out for when contracting with care homes. Please could anyone elaborate on this? Also, can anyone confirm if under normal circumstances in our position as POA holders, and my Mum being self-funding whether we would be expected to enter into any contractual agreements with the care home? We do not want to be compelled to contribute to additional weekly care home top up fees in the future, as we do not know what our own financial situation will be. If we were unwilling to sign such an agreement, would this prevent my mum from going into her preferred home, if it is above the standard local council care home rate (but she would initially be self funding to a higher rate)?

7) Position when/if mum's funds run out and care home fee is over council threshold

- Following on from the above, assuming my mum's property is sold and the proceeds along with her savings (down to the relevant threshold) are all used up, and assuming we (or any other third party) are unable to contribute, where would this leave my Mum? Could the Council move her to a cheaper home, or are they likely to look kindly and negotiate with the home so that she can stay in residence? What normally happens in these circumstances please?

8) Deprivation of Assets

My mum's home is not in the best of repair. If the home needs to be sold, is it acceptable for some of my mum's savings to be utilised to bring the property up to a more saleable standard? In some respects this may be a waste of time/effort as ultimately any increase in value of the property will benefit the local council as there will be more residual monies to fund my Mum's care. On the other hand, there could be benefits to obtaining a higher selling price depending on the unknown future circumstances.

9) Payment of care home cost (long term care) prior to property being sold

- If and when long term care is decided as the correct solution - and therefore Mum's property would need to be sold. After the 12-week disregard, and prior to the property sale, would Mum automatically be eligible for an interest-free loan from the council until such time as the sale proceeds have been received? Is it usual for such loan funding to be agreed in these circumstances?

10) Medication

I have heard (from unofficial sources) that after Mum has either gone home or gone into short / long term care, sometimes the doctors will cease the Alzheimer drugs on the basis that Mum's rehabilitation / entry into care has been completed. I cannot see that this makes sense, as surely there is a duty to keep the patient as fit and well as possible. Do you know if this is common practice?, and if so whether it can be appealed? The reason for asking is that we have already witnessed a detrimental affect on my Mum's mental state when the NHS took the decision to discontinue this treatment when admitted to hospital and we have had to fight a long hard battle to get this reinstated, but the quality of her life - now she is back on the medication is considerably improved.

Thank you for any help you can provide

 

[Chemmy]

Hello and welcome to Talking Point

I'm sure others will be along to answer your questions (maybe in the morning) but in the meantime, you might find the following fact sheets of interest

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=173

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2710

I can't say I've ever heard of a 52 week short term care option before. When my MIL was discharged after falls last year, an intermediate care package was set up by the hospital as described in the fact sheet, but she would have been expected to pay after the initial six weeks were up if it had worked out. This covered 4 x home visits per day and an alarm system.

However, two weeks after she got home, she fell again and it was then straight to a CH from hospital as she needed 24/7 supervision because of the falls. She owned a house and had savings above the threshold so was self-funding from day 1.

I have to say, as a family we were relieved that the decision was made to move her to the CH ; she had another fall there, but was patched up in hospital, discharged within a few hours and fussed over back in the CH. As the manager says, they can't guarantee she won't fall under their watch, but she will be found very quickly, unlike the hours she spent alone lying on the floor in the bungalow, waiting for help to come.

I saw her earlier this week, eight months on, and she said the move had given her "a new lease of life".

 

[Chemmy]

Re doing up the house.. The sale of MIL's bungalow went through last week. It needed a new garage roof, a new boiler, decoration throughout and a complete overhaul of the garden. We were advised by the estate agent not to bother doing anything but to sell it as seen...the cost and effort involved just wouldn't be worth it and there are as many buyers attracted to a 'project' as those who want it ready done.

We got a fair price in the end and even if we'd made an extra £10k by doing the repair work ourselves, that would have simply saved the LA an extra few weeks of care if the money runs out.

So we cleaned, decluttered ruthlessly (that was my job as I had fewer emotional ties) and cut back the brambles to give it the best chance of a sale. You'll be amazed at how much better that makes a place look. It had offers fairly quickly. The only reason it took so long in the end is because the first buyers' buyer pulled out so we had to start the process again with a new buyer. There were two interested parties second time round and it went to best bid, so condition does not put people off if your price is right.

 

[Rich 3]

Many thanks Chemmy for your helpful replies. This is a steep learning curve and I am grateful for any advice/ shared experiences I can get - as I am not always sure that Social Services & the NHS OT's are necessarily putting my Mum's interests first. It is therefore helpful to know what decisions can be challenged and influenced in the appropriate way.

Richard

 

[Chemmy]

Just a thought as I'm the only one to respond so far - it might be better to post just one question at a time...your original list is quite daunting Maybe start a new thread with your main concern...?

I don't know the ins and out of LA funding as both my mum and MIL had savings well above the limit when they moved into care in addition to a small bungalow each so the 12 week disregard didn't affect them. We didn't even bother with financial assessments as it was quite clear no assistance would be forthcoming.

This made things very simple. We found CHs we were happy with and took the first rooms available - at the very least, get your mum's name down on the waiting lists of any suitable ones today. You can always turn a place down.

Sorting out the finances was of less importance than making sure they were cared for and safe. A hospital is never going to be a good environment for someone with dementia and neither is moving back home alone if falls are likely - the first time MIL fell, she lay on the floor overnight, the second time she had the alarm and didn't use it. The third time she was in the CH and was found within minutes.

 

[Wirralson]

Hi All,

The questions I have [are]

1) Review Meeting with Social Workers and Occupational Therapists - Wednesday 14 January 2015

- We have a meeting to discuss mum's current state and her ability (or not) to try living at home again (the alternatives being short /long term care)
- Who has the final decision? We are not sure that mum is ready/or will be ready to go home at this stage but the OT's will be pushing to discharge one way or the other as the NHS are picking up the cost.
- Mum has been suffering dizzy spells and has had several falls - we wonder if this is due to the increased Alzheimer's medication which has only been in place for 2 weeks and hasn't really had the time for any full side effects to become apparent. The delay in this medication being administered was down to inefficiencies in the NHS system.
- Do you think it would reasonable under these circumstances to ask for an extension to the rehab period until the full affects of the increased drug dosage are known?

This sounds like a Care Programme Approach meeting. You are right that the NHS will be pushing to discharge once the immediate clinical requirement for a hospital stay has diminshed. They did so in my mother's case (although her admission was to a psychiatric unit rather than an acute unit). However, she should not be discharged until there are adequate arrangements in place for her onward care and there should eb an onward care referral either to a community based team (NHS) or Social Services (more general care) or possibly both. It is entirely reasonable to ask whether the rehab period can be extended, but I'd actually suggest being pretty assertive on this. However, it is more than possible that the recommendation will be for residential care of some kind, with the rehab continuing in that environment. That could be short-term (the NHS sometimes uses nursing homes in this way rather like the old cottage hospitals/convalescent homes were used) or long-term. Two falls with a risk of repitition would usually be a "yellow card" in this context. You do need to decide how far you wish to push against this.

2) Short Term Care -v- Long Term Care

- Mum is indecisive on whether going home or short/long term care would be the best solution for her, and from our view it is also unclear - it has been suggested that mum may benefit from short term care (which I believe can be up to 52 weeks). I understand this would allow mum to experience a care home but also give her the option of returning home (on the basis that the property would not have to be sold at this stage) which may be a useful route under the circumstances. Who can decide / agree if short term care can be an option in this case, and would we have a say in where she goes? (as this could end up being her permanent home).
- If a unanimous decision were to be made that my mum would go into short / long term care, how long do we have to find a suitable placement for her - bearing in mind it is not recommended for people with Alzheimer's to be constantly changing their environment? Certainly the various homes that we have viewed already appear to have waiting lists.
- My understanding with long term care is that as my mum will be self-funding, the property would likely have to be sold straight away - short term care would circumvent this for an initial period until it was established if a care home environment was right for my Mum?

The ultimate decision rests with the clinicians treating your mother, who are legally obliged to act in the patient's best interests. They are supposed to consult the patient and the family if the patient wishes or if it seems to the clinicians to be in the patient's best interests. However, while you may be able to influence the decision, or to challenge it, you do need to remember that the clinical team's duty is to your mother and not to you. If you are PoA holders for Health and Welfare you have rather more formal influence on events, but still not an absolute veto.

3) Needs Assessment

I understand that it is critical that this takes place before any further decisions are made, and that I can/should be present and have sight of the finalised report. In addition, I believe that if we are unhappy with any of the content as POA holders we can challenge this. Please confirm if this to be correct? Whilst this Needs Assessment is being undertaken, can we expect my Mum to continue under the 'rehab' arrangement?

Your mother, or any person acting lawfully appointed on her behalf as a PoA holder for Health and Welfare (although less so it is only PoA for Property and Affairs) has a right to see the report by way of Subject Access Request under the Data Protection Act, and the hospital should have a published procedure for alloing you to do this. It is really simple and very common - in one of my day jobs we did these in their hundreds a year. You may also have a right under s26 of the same Act if you are excercising a specific legal right as PoA holder or if you are acting on your mother's behalf.

Whether or not the rehan continues is a clinical matter, and will not be directly driven by the timing of the needs assessment. I'd expect the needs assessment to be based on your mother's condition as she is now and is expected to be following rehab, with a check to confirm that she has reached the anticipated point.

4) Financial Assessment

- I have been advised by Social Services that it is not normal practise to carry out a financial assessment until after a decision has been made that the patient will be going into short / long term care. This makes it difficult to plan and understand the financial implications in advance. Is it your understanding that what I have been told is correct? It is difficult for us on this basis to know the implications of the different fees relating to the homes we have looked at.

This is correct. It is unlawful for a financial assessment to be carried out unless and until the decision ahs been taken that the patient is going into long-term or short-term care (and after she has been assesed for NHS CHC funding - a topic in itself. The reason for this is that it is unlawful under the Data Protection Act 1998 for the LA to seek or process (including hold) the information unless and until there is a lawful basis for it raising charges for accommodation. Planning is less difficult than you think, since your mother's income and assets should be known to you as PoA holders, and this will enable you to work out whether your mother is initially sefl-funding (in which case the LA has little or no input) or whether LA funding is involved. If the latter, you need to knwo the "expected to pay rate" (which is the bulk purchase limit on what the LA will pay). The LA should be able to tell you this, but whether it does is another matter entirely.

5) 12-week Disregard

- Please confirm that this will be effective (for either short or long term care) for the first 12 weeks of my Mum's care fees. It is my understanding that this is not "free" in so far as my mum would be expected to contribute via her Pension Credit and Attendance Allowance income, etc. Is this correct please?

Not something of which I have first hand experience, but others on this site have great expertise.

6) Contracts with Care Homes

- I am aware, that there are some things to look out for when contracting with care homes. Please could anyone elaborate on this? Also, can anyone confirm if under normal circumstances in our position as POA holders, and my Mum being self-funding whether we would be expected to enter into any contractual agreements with the care home? We do not want to be compelled to contribute to additional weekly care home top up fees in the future, as we do not know what our own financial situation will be. If we were unwilling to sign such an agreement, would this prevent my mum from going into her preferred home, if it is above the standard local council care home rate (but she would initially be self funding to a higher rate)?

I've seen references on here to both contracts being with the individual (via PoA Holder or Deputy) and with LAs with the latter recovering the costs. It will depend slightly on the route by which your mother enters care. If entirely "voluntary" then I'd expect the contract to be between the care home and the person arranging teh care (PoA holder, presumably) but if the LA is invovled in any way then the contract should be between the LA and the Care Home. (There is an earlier post on here by jenniferpa which explains that CRAG requires that the LA should pay top-ups and revover the top-up from the person paying).

You (and your mother) have a free choice of care home. What happens is (but note that the law and thresholds are about to change in England) that when your mother's assets approach the upper threshold, you notify the LA. The LA then starts contributing a proportion of the costs down to the lower threshold. (IIRC £14,250 in England). Once you reach the lower point, the LA takes over the costs in their entirety. The relevant guidance (I think it is in CRAG = Charging for Residential Accommodation Guidance says residents should not normally be moved where they are in a home and the costs are above the LA's "expected to pay rate". Jenniferpa posted a link a while back but I can't find it at the moment). Note that you cannot as an individual be obliged to sign a top-up now or in the future and I'd suggest you should refuse to do so if asked, and then seek professional advice.

7) Position when/if mum's funds run out and care home fee is over council threshold

- Following on from the above, assuming my mum's property is sold and the proceeds along with her savings (down to the relevant threshold) are all used up, and assuming we (or any other third party) are unable to contribute, where would this leave my Mum? Could the Council move her to a cheaper home, or are they likely to look kindly and negotiate with the home so that she can stay in residence? What normally happens in these circumstances please?

See above

8) Deprivation of Assets

My mum's home is not in the best of repair. If the home needs to be sold, is it acceptable for some of my mum's savings to be utilised to bring the property up to a more saleable standard? In some respects this may be a waste of time/effort as ultimately any increase in value of the property will benefit the local council as there will be more residual monies to fund my Mum's care. On the other hand, there could be benefits to obtaining a higher selling price depending on the unknown future circumstances.

Seek professional advice. A friend whose MiL has dementia is a professional surveyor and she and her husband sought advice on this problem. It is important that you seek such advice as PoA holders and the cost of so doing will be a legitimate charge on your mother's assets. It will depend on the relative costs (and financial risks) of getting the work done when compared with any potential increase in value. This will mean seeking advice probably from a surveyor and a solicitor. I am not qualified to offer such advice and it would be improper to attempt to do so without knowing a lot more than it would be appropriate for you to share via this site.

9) Payment of care home cost (long term care) prior to property being sold

- If and when long term care is decided as the correct solution - and therefore Mum's property would need to be sold. After the 12-week disregard, and prior to the property sale, would Mum automatically be eligible for an interest-free loan from the council until such time as the sale proceeds have been received? Is it usual for such loan funding to be agreed in these circumstances?

No idea how common this is. This link from the site owners here mentions the possibility. http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2710. However, note the "may" in the link. There is no legal obligation on LAs to offer what is in effect an interest free loan, and such loans from LAs are generally unusual, as they are under a legal obligation to use money efficiently (I know, I'm trying not to laugh too.) So I'd have said not automatically, but worth asking. Practice does vary from LA to LA, so while it is worth asking, it is impossible for me to be more precise on the level of information you can legitimately share in open forum.

10) Medication

I have heard (from unofficial sources) that after Mum has either gone home or gone into short / long term care, sometimes the doctors will cease the Alzheimer drugs on the basis that Mum's rehabilitation / entry into care has been completed. I cannot see that this makes sense, as surely there is a duty to keep the patient as fit and well as possible. Do you know if this is common practice?, and if so whether it can be appealed? The reason for asking is that we have already witnessed a detrimental affect on my Mum's mental state when the NHS took the decision to discontinue this treatment when admitted to hospital and we have had to fight a long hard battle to get this reinstated, but the quality of her life - now she is back on the medication is considerably improved.

It depends on the drug. In sme cases titrating the dose to get it right can take some time, and there are specific guidelines for some of the drugs involved, due to risks and side-effects. In my late mother's case there were repeated attempts to take her off Risperidone (Risperdal) as required by NICE guidance, but she ended up on a low dose until the end. All I can suggest is do what you seem to have done - ask questions and state your case.

Hope this helps.

W

 

[Rich 3]

Thank you so much Wirralson for this comprehensive reply. It is very much appreciated. We will see what happens at the meeting tomorrow.

Richard