concernedwife

[concernedwife]

Hello

I have reached the end of my time as a full time carer for my husband who has Alzheimer's. I have managed for the last 5 years but cannot continue because it will affect my mental health.

My husband's children (particularly one of his daughters) from his previous marriage (all adults) have been critical of me for at least the past 18 months. This particular daughter lives some 80 miles away. She has insinuated some months ago to his carer that she wants him to live with her and to claim his benefits.

The consultant has advised that because she is concerned that it would not be in my husband's "best interests" to be placed in a care home local to me and that she feared he would end up in a closed ward in the local mental hospital, has said that she would need to consult the "wider family" to ask if his daughter would have him. This meeting with his son and daughter has now taken place and the have until this coming Monday to decide whether or not they will take him.

We are talking about my husband here. If this happens, I will be in a position whereby I will not be able to see my husband on anything resembling a regular basis. In fact, I think they would make it very difficult for me to see him.

I cannot believe that the Mental Health Act allows such a situation to continue and will probably result in him being forcibly taken from me against my will.

Please help. What can I do?

 

[Brucie]

Hello and welcome to Talking Point

In your place I would consult as many places as possible to find out your options, and to confirm or otherwise the situation regarding his care.

Firstly the Alzheimer's Society Help Line - next week.

http://www.alzheimers.org.uk/helpline

Age Concern may help, and I'm sure other members will have suggestions, too.

 

[Cate]

Hello and Welcome.

The consultant has advised that because she is concerned that it would not be in my husband's "best interests" to be placed in a care home local to me and that she feared he would end up in a closed ward in the local mental hospital, has said that she would need to consult the "wider family" to ask if his daughter would have him.

This is quite a strange opinion for your husbands Consultant to have. I would take the advice Bruce has given you to get as much advice as you can.

I would have thought, though I am no expert that as your husbands next of kin you have all say in what care home he resides at. 'Locked ward' sounds as if she is trying to frighten you in some way, this implies all sorts of things. Most care home have locks on the doors to protect residence, but there is nothing sinister in that.

Does your husband have a Social Worker, this is the person you need to speak to with regard a suitable care home for your husband, and if you want one on your door step so you can continue to visit, I dont think the family can stop you.

I would venture you give you just once piece of advice, dont be bullied or rushed into making ANY decision until you have seeked independent advice, and thought about your and your husbands options.

Best wishes
Cate

 

[Grannie G]

Hello Concernedwife

If the consultant fears your husband may end up in a closed ward in the local mental hospital, I`m surprised she feels his daughter will be able to have him live with her, when he has been living with you for so long.
I agree you must get some independent advice as you are the next of kin and should have your say in any decisions.

 

[jenniferpa]

Hi and welcome to Talking Point.

I just want to clarify the position.

Due to your own health you can no longer care for your husband at home.

One of your step daughters appears to be willing to care for him in her own home.

Due to distance and personalities it seems unlikely that you will be able to see your husband frequently (or even infrequently).

The consultant feels that a local care home would not be able to cope with your husband, hence the closed ward option.

Now some questions for you.

Has this daughter ever cared for your husband (or anyone else with AD) full time?

Does she have any children? Is she employed outside the home?

If the consultant feels that a locked ward would be the only option locally, how exactly does anyone imagine that a carer can deal with someone determined to wander off (I assume that is the issue)?

Does your husband have other behavioural issues that couldn't be addressed in a care home (violence being the biggie)?

As to the benefits - what are we talking about here? His AA? His pension? Carer's allowance (a pittance I have to say)? Even if he lives with her he still has a duty to pay his share of the bills of the marital home. This is why it is not uncommon should someone go into a care home for a portion of their pension to be returned to the surviving spouse, and this by the local authority who are not renowned for over-generosity.

Perhaps you could tell us more about your husband's condition? Is he mobile, incontinent etc.?

Have you ever had a carer's assessment? Is there anything that could be provided that would help you to carry on (not that I feel that you should - sometimes it just isn't possible)?

Sorry for all the questions.

 

[Brucie]

All questions, I'm afraid...

Do you have any form of Power of Attorney for his affairs? Does he have a Will?

Do you own your dwelling? If so, how is it registered - Tenants in Common?

Did you ever get on with the daughter involved? That is, did she resent her Dad re-marrying? ... is there history here?

All these things can have relevance.

 

[Skye]

Hi, and welcome!

I just want to offer my sympathy to you, you must be heartbroken.

I'm in a similar situation in that I'm my husband's second wife, and he has adult sons from his first marriage. I know how I would feel if there was any suggestion that they should take John from me.

Please try everyone yo can to find a solution to this. Alzheimer's Society helpline should be your first port of call. But you could also contact Princess Royal Trust for Carers, they would also offer support.

There will also most probably be a local advocacy service -- PRT could put you in touch with them.

You desperately need someone to fight your corner. I don't imagine you're in any fit state to fight yourself!

Please let us know how you get on, we do care about you.

Love,

 

[Sandy]

Hi Concernedwife,

You've already had lot's of good advice, there's not much I can add.

It sounds as if the process of considering a move for your husband to a care home has triggered the Deprivation of Liberty Safeguards process. This process was made mandatory in April 2009 to prevent situations like people being admitted to care homes without their consent but not under a section.

One aspect of this process may be to have a Best Interests Meeting, where input from all parties can be given. Sometimes an Independent Mental Capacity Act Advocate (IMCA) is part of the process to support and represent of the person lacking capacity.

Here are a few links that can give a bit more detail:

http://www.alzheimers.org.uk/factsheet/475

http://www.ic.nhs.uk/services/mental-health/mental-capacity

http://www.publicguardian.gov.uk/mca/assessing-capacity.htm

http://www.rbkc.gov.uk/socialservices/general/mental-capacity7.asp

It sounds as if this process tries to take account of the wishes of the person before they lost capacity as much as possible - so if you did have a power of attorney document that would certainly count in your favour.

Take care,

 

[Izzy]

Hi, and welcome!

I just want to offer my sympathy to you, you must be heartbroken.

I'm in a similar situation in that I'm my husband's second wife, and he has adult sons from his first marriage. I know how I would feel if there was any suggestion that they should take John from me.

Hi there. Can't be of much help other than to offer my own sympathy and agree that you need to fight or have someone help you to fight for your rights to keep close to your husband. My husband is much older than me and I am his second wife. He has two grown up children. His son I have met once (we have been married 30 years) and his daughter used to visit us but has lost touch and no longer sees her dad. Bill used to be very upset about this but I think he may have forgotten about them now. I just know that there is no way I would want them to have a say in what happens to Bill. I have an enduring power of attorney and a welfare power of attorney and I think that these should protect me from it. I am thinking of you and do know how you must feel. I hope you are able to sort something out. Take care. Izzy x

 

[concernedwife]

Many thanks for this, Cate.

The consultant has said that the reason why she couldn't recomment that he be placed in a care home locally is that he can be uncooperative and angry. Nevertheless, if he is taken away then it is not in MY best interests.

My husband does have a social worker, and I will speak to her further about this.

You are right, I won't be rushed or bullied and will also consult my solicitor (who has already been briefed).

Thank you so much.

Hello and Welcome.

The consultant has advised that because she is concerned that it would not be in my husband's "best interests" to be placed in a care home local to me and that she feared he would end up in a closed ward in the local mental hospital, has said that she would need to consult the "wider family" to ask if his daughter would have him.

This is quite a strange opinion for your husbands Consultant to have. I would take the advice Bruce has given you to get as much advice as you can.

I would have thought, though I am no expert that as your husbands next of kin you have all say in what care home he resides at. 'Locked ward' sounds as if she is trying to frighten you in some way, this implies all sorts of things. Most care home have locks on the doors to protect residence, but there is nothing sinister in that.

Does your husband have a Social Worker, this is the person you need to speak to with regard a suitable care home for your husband, and if you want one on your door step so you can continue to visit, I dont think the family can stop you.

I would venture you give you just once piece of advice, dont be bullied or rushed into making ANY decision until you have seeked independent advice, and thought about your and your husbands options.

Best wishes
Cate

 

[concernedwife]

Hello Izzy. Thank you for your very helpful comments.

I am, of course, heartbroken by the very thought that he could end up 80 miles away. He will be heartbroken too.

I am determined now to follow it up with my solicitor (who specialises in old age and dementia). She has already mentioned my Human Rights and much as I hate the phrase it might actually prove useful on this occasion.

Thank you again, and I wish you all the best.

Kind regards

Hi there. Can't be of much help other than to offer my own sympathy and agree that you need to fight or have someone help you to fight for your rights to keep close to your husband. My husband is much older than me and I am his second wife. He has two grown up children. His son I have met once (we have been married 30 years) and his daughter used to visit us but has lost touch and no longer sees her dad. Bill used to be very upset about this but I think he may have forgotten about them now. I just know that there is no way I would want them to have a say in what happens to Bill. I have an enduring power of attorney and a welfare power of attorney and I think that these should protect me from it. I am thinking of you and do know how you must feel. I hope you are able to sort something out. Take care. Izzy x

 

[ella24]

The consultant has said that the reason why she couldn't recomment that he be placed in a care home locally is that he can be uncooperative and angry. Nevertheless, if he is taken away then it is not in MY best interests.

What the consultant says is absolutely ridiculous, and actaully contradictory.

If your husband is at risk of being 'angry' / violent, then he should be in a more formalised care setting and you should be helped (via NHS or SS) to find the right place/medication so that you, or the CH staff, or his daughter and her family are not put at risk if he does become uncontrollable with them.

lots of luck

e

 

[concernedwife]

Hello Bruce

Yes I do have an EPA in place but I did not register it when he lost capacity because the house is mine and the accounts are in my name - except for the joint account into which his pension and DLA is paid. I was told by the Office of the Public Guardian that under these circumstances there was not much point in me registering it (as an EPA is specifically for financial and property matters).

He does not have a will.

The house is solely in my name.

There is history in my relationship with his ex wife and children, which I cannot divulge here.

Kindest regards

All questions, I'm afraid...

Do you have any form of Power of Attorney for his affairs? Does he have a Will?

Do you own your dwelling? If so, how is it registered - Tenants in Common?

Did you ever get on with the daughter involved? That is, did she resent her Dad re-marrying? ... is there history here?

All these things can have relevance.

 

[concernedwife]

concerned wife

Dear Jennifer

Thank you for your comments. Your summary of the situation is correct.

His daughter has never cared for anyone with AD before, including my husband.

She is not married and has no children. She works outside the home on a part time basis.

He would wander off if he had the opportunity. Also he displays anger and agression from time to time.

He is generally slowing down, though still mobile. He has fecal incontinence.

I had a carer's assessment some 2 months ago, but they have not even sent me the notes to sign. I do get morning care for washing/dressing 7 days a week (but only for the past 5 weeks because I told them I was desperate and could not cope) and also 9 hrs sitting service each week.

Look forward to your further thoughts.

Very kind regards

Hi and welcome to Talking Point.

I just want to clarify the position.

Due to your own health you can no longer care for your husband at home.

One of your step daughters appears to be willing to care for him in her own home.

Due to distance and personalities it seems unlikely that you will be able to see your husband frequently (or even infrequently).

The consultant feels that a local care home would not be able to cope with your husband, hence the closed ward option.

Now some questions for you.

Has this daughter ever cared for your husband (or anyone else with AD) full time?

Does she have any children? Is she employed outside the home?

If the consultant feels that a locked ward would be the only option locally, how exactly does anyone imagine that a carer can deal with someone determined to wander off (I assume that is the issue)?

Does your husband have other behavioural issues that couldn't be addressed in a care home (violence being the biggie)?

As to the benefits - what are we talking about here? His AA? His pension? Carer's allowance (a pittance I have to say)? Even if he lives with her he still has a duty to pay his share of the bills of the marital home. This is why it is not uncommon should someone go into a care home for a portion of their pension to be returned to the surviving spouse, and this by the local authority who are not renowned for over-generosity.

Perhaps you could tell us more about your husband's condition? Is he mobile, incontinent etc.?

Have you ever had a carer's assessment? Is there anything that could be provided that would help you to carry on (not that I feel that you should - sometimes it just isn't possible)?

Sorry for all the questions.

 

[JPG1]

concernedwife,

My thoughts, and more questions, but don’t feel the need to answer them – they’re just thoughts.

Is the consultant saying that “no care home” would be suitable for your husband? Ever? Surely not.

Or is the consultant saying that your husband is not yet at the stage-of-dementia where he would be better cared for if he were to be living in a care home? (And that is the only way I can see the Deprivation of Liberty Safeguards coming into this, i.e. if you want your husband to live in a care home but he does not need that kind of care yet.)

Or is the consultant indicating that she has no faith in care homes local to where you live, and if that is the case, then the consultant should deal with that problem elsewhere, such as with CQC, generally and without reference to your husband.

But not by making such a ‘questionable’ statement herself.

“To ask if his daughter would have him” sounds equally questionable to me. Did the consultant have any meetings before now with your husband’s son and daughter? Had she ever met them before?

Were you present when the consultant had this recent meeting with your husband’s son and daughter? A 'best interests' meeting should have all relevant parties present; otherwise it all becomes 'hearsay'.

How did the consultant come to know about the daughter wanting your husband to live with her? From the carer? Or from the daughter?

I would want to know what the consultant thinks might happen if it soon turned out that your husband’s daughter could not in fact care for him, once he arrived to live with her?

Personally, I don’t see the relevance of any past-history with the ex-wife and children, not in connection with the decision that now has to be made about your husband’s future. You are his wife.

There’s often a past-history with any ex and children of a previous marriage. The ex is out of the picture, (or should be) and I don’t see that the adult children have any rights, unless you were abusing your husband in some way. On the understanding that you’re not, that you still care for him, and that you would like to continue to be closely involved in his future life in care, then the adult children should be invited to show their understanding of your position.

More thoughts as and when or even if they emerge! Meanwhile, stay strong, stay resolute.

.

 

[katherine]

Hi

This situation sounds so difficult. Can you get onto the Alzheimer's Society advocacy service and see if someone can help you sort all of this out, as you are probably already so so exhausted from caring for your husband.

Has he been able to see his children regularly since all of this began? It sounds crazy that he should go to live with them now, but as a daughter of someone with Alzheimer's I can understand why they might want to try to look after him. Seeing him go into a home will be painful for them too and although it may be the best thing for him they may not want to face up to that yet. From experience you must know that they won't be able to cope but they don't know that necessarily and their motives can't be all bad. His benefits wouldn't in any way compensate for the huge amount of time and energy they'd have to put in looking after him. It sounds like there's a lot of history and resentment brewing here and maybe underneath that all of you are wanting the best for him. Is there no way that you can't try to put aside some of the history of the situation and communicate. Even if you wrote a letter.

In the end of the day he will need you and them - the people who love him - and no-one should be cut out of that.

I so hope that you all make some headway and can create a peaceful and loving environment for him wherever that may be

Be strong

Katherine