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
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