Threatened by a call to Adult Protective Services

[AnitasCaregivers]

I am here. My screen name is how I refer to caring for my mother! We are 4 in our team. No one can stand being with my mother more than several days a week.

We are certainly not ‘professionals’ in the commercial sense but we truly are now, in the practical sense. We are constantly searching for answers, advice and solutions. The doctors, up until last week, have been of no help. It’s really shocking how lacking they are in experience and knowledge with dementia. Pills are NOT the answer.

My mother will be 90 soon. We have been taking care of her, at home, for 4 years. Last week, we finally pleaded our way into seeing a palliative care doctor, who understands.

A month ago, in our search for help, we arranged a home visit by a hospice organization. Our trust was betrayed by those ‘professionals,’ whose only mission was to try to bully their way into my mother’s life and monies. They threatened me with Adult Protective Services. It is such a travesty to prey on caregivers! This dementia beast has made me into a stronger, protective fighter. We as caregivers, are my mother’s only protection while she is in this vulnerable state. In addition to protecting my mother’s safety in her home, now I need to defend against scam artists. Hospice and adult care scam artists are evil heartless people. I reported that Hospice organization. Their bullying ‘sales pitch’ was morally wrong.

 

[jenniferpa]

I suspect you are not in the UK - hospice doesn't work that way in the UK.

Anyway, welcome to Talking Point. I'm not sure what you are trying to do here. If it's to rant about your situation, that's absolutely fine, but generally the forum's at it's best if you are asking for suggestions about how to go forward with caring, for example.

 

[Rosettastone57]

I suspect you're talking about the system in the USA is that right? Adult protective services is what would we would call social services in UK here. There are posters on this forum from the USA and North America who may be able to give you more advice

 

[AnitasCaregivers]

Not ranting really. It was my first post to the moderator. We are here to search for information. Here in the USA, one is mostly on your own when it comes to dementia care.

We do our very best. My mother’s doctor told us we are giving super exceptional care. She looks wonderful physically, but her cognitive is on a steady rapid downfall and about at a 4-5 year old’s level. She can only remember maybe the last 30 seconds of her daily life. She is mean and angry. She thinks she drives, that she prepares her meals and that the caregivers are her volunteer servants. We guide her 90% through her day, making sure she is physically active.

But, our quest for knowledge is on-going.

To have a ‘professional’ (for profit) organization bully us was a cruel eye opener. They are only after the money.

 

[Jezzer]

Hello there. It certainly seems you are giving your mother superb care and that is wonderful. Forgive me, but I am also unclear what you are actually wanting from this forum. You say your quest for knowledge is on-going. The purpose of the Talking Point forum is to provide support for those who have loved ones suffering with Dementia. Obviously, some members have more knowledge of the condition than others. We also have members who actually have Dementia. We are not "experts". The majority of us joined this forum seeking support and understanding as we have a family member with Dementia. If I may use myself as an example: I joined TP after my mother was diagnosed with Mixed Dementia two years ago. I just needed to connect with folk in the same situation, who could perhaps offer advice. Sometimes I just need to offload and I can do so here without judgement or criticism. I have found a new "family" here. People who totally understand because they are - or have been - in exactly the same situation. You are clearly upset about being bullied by a system that is not familiar here in the UK - you mentioned this in both your posts. May I suggest you explore the forum - particularly how to use it - as this will help you decide if you feel it is right for you. With Best Wishes.

 

[Rosettastone57]

Not ranting really. It was my first post to the moderator. We are here to search for information. Here in the USA, one is mostly on your own when it comes to dementia care.

We do our very best. My mother’s doctor told us we are giving super exceptional care. She looks wonderful physically, but her cognitive is on a steady rapid downfall and about at a 4-5 year old’s level. She can only remember maybe the last 30 seconds of her daily life. She is mean and angry. She thinks she drives, that she prepares her meals and that the caregivers are her volunteer servants. We guide her 90% through her day, making sure she is physically active.

But, our quest for knowledge is on-going.

To have a ‘professional’ (for profit) organization bully us was a cruel eye opener. They are only after the money.

I think you may need to clarify your last statement regarding bullying. Being in the UK this may be a situation which is unfamiliar to forum members. Difficult to give advice otherwise.

 

[Amy in the US]

I just wanted to say hello and welcome to Talking Point. I am sorry to hear about your situation. It is contemptible for a health care organization to take advantage of a vulnerable patient.

If you are in the States (just a guess, and apologies if I'm incorrect), you might want to look into reporting that company to a variety of agencies. Again, apologies if you know this already, or have already done so!

Your state attorney general's office, the local Better Business Bureau, and your local ombudsman for residents in long term care facilities, would all be interested to hear about this. You can contact your local Council on Aging/Area Agency on Aging/Senior Services/Department of Aging, to find contact information for these offices and for other officials who would want to hear about this. They may also be able to help you find a different hospice company, should you ever need one again, who will better suit your needs. If you don't know your local agency, Google the name of your state and "Agency on Aging" to find them.

Your local branch of the US Alzheimer's Society is another possible source of help and contact information. You can find them here: https://www.alz.org/local_resources/find_your_local_chapter

There is probably a formal complaint process for your local Adult Protective Services department, which you may want to consider. Your state and/or local Department of Health could likely advise.

If monies were lost you may wish to seek redress via legal action; you would want to discuss that with your and/or your mother's attorneys (lawyer or legal professional).

When dealing with some predatory scams and "charitable organizations" that targeted my family members, our banks and financial advisors were helpful.

(For our UK readers, in the United States hospice services may be offered through a local hospital or veterans' administration, but there are also private hospice companies. Some are for profit and some are not, and all are different. Finding a good one to suit your needs is a topic often discussed at the workshops and groups run by my local Alzheimer's Society. I gather the process in the UK is a bit different.)

I hope you are able to find a way forward to continue to provide care for your mother and wish you and your family all the best.

 

[Beate]

Thanks for explaining this, Amy - in the UK hospice care is NHS run and always free of charge.

 

[canary]

I also gather (from another forum) that the terms "hospice" and "palliative care" mean different things in US and UK - I believe, for example, that in US they do not necessarily indicate end of life care - so the nature of the care provided and the system of access is, of necessity, different.

I think Amy has given good advice about this subject and I dont think many of us know about the US system, although we can certainly help where is comes to dealing with the problems of dementia itself.

I do hope you can get this distressing problem sorted

 

[Jezzer]

I just wanted to say hello and welcome to Talking Point. I am sorry to hear about your situation. It is contemptible for a health care organization to take advantage of a vulnerable patient.

If you are in the States (just a guess, and apologies if I'm incorrect), you might want to look into reporting that company to a variety of agencies. Again, apologies if you know this already, or have already done so!

Your state attorney general's office, the local Better Business Bureau, and your local ombudsman for residents in long term care facilities, would all be interested to hear about this. You can contact your local Council on Aging/Area Agency on Aging/Senior Services/Department of Aging, to find contact information for these offices and for other officials who would want to hear about this. They may also be able to help you find a different hospice company, should you ever need one again, who will better suit your needs. If you don't know your local agency, Google the name of your state and "Agency on Aging" to find them.

Your local branch of the US Alzheimer's Society is another possible source of help and contact information. You can find them here: https://www.alz.org/local_resources/find_your_local_chapter

There is probably a formal complaint process for your local Adult Protective Services department, which you may want to consider. Your state and/or local Department of Health could likely advise.

If monies were lost you may wish to seek redress via legal action; you would want to discuss that with your and/or your mother's attorneys (lawyer or legal professional).

When dealing with some predatory scams and "charitable organizations" that targeted my family members, our banks and financial advisors were helpful.

(For our UK readers, in the United States hospice services may be offered through a local hospital or veterans' administration, but there are also private hospice companies. Some are for profit and some are not, and all are different. Finding a good one to suit your needs is a topic often discussed at the workshops and groups run by my local Alzheimer's Society. I gather the process in the UK is a bit different.)

I hope you are able to find a way forward to continue to provide care for your mother and wish you and your family all the best.

Thank you Amy! Best Wishes Jan xxx

 

[Amy in the US]

Oh, yes, @canary, you are correct! Hospice care here in the States does not necessarily denote end-of-life care. That is an important point I should have mentioned. Mea culpa!

 

[RedLou]

Welcome to TP. Please don't think that because you are in the US you are unwelcome here. As you can see, we have members from across the pond (such as the incredible Amy, without whom these boards would be a lesser place!). I hope getting that off your chest helped and you will find the forum useful.

 

[emp]

@canary May I add that hospice in the UK doesn't necessarily mean end of life either. Yes it's what we predominantly work with, but we support anyone with a life limiting condition through symptom control and respite options. Some hospices in the UK have an Admiral Nurse to support with dementia in their local area

 

[canary]

@emp Do you get people who do not have any other life limiting condition except for dementia? I was under the impression that in UK (as opposed to US) hospice care was not considered for people with dementia (as it is considered a social need rather than a medical one) unless it is was also present with another primary need - eg if someone with cancer also had dementia.

 

[Hazara8]

I am here. My screen name is how I refer to caring for my mother! We are 4 in our team. No one can stand being with my mother more than several days a week.

We are certainly not ‘professionals’ in the commercial sense but we truly are now, in the practical sense. We are constantly searching for answers, advice and solutions. The doctors, up until last week, have been of no help. It’s really shocking how lacking they are in experience and knowledge with dementia. Pills are NOT the answer.

My mother will be 90 soon. We have been taking care of her, at home, for 4 years. Last week, we finally pleaded our way into seeing a palliative care doctor, who understands.

A month ago, in our search for help, we arranged a home visit by a hospice organization. Our trust was betrayed by those ‘professionals,’ whose only mission was to try to bully their way into my mother’s life and monies. They threatened me with Adult Protective Services. It is such a travesty to prey on caregivers! This dementia beast has made me into a stronger, protective fighter. We as caregivers, are my mother’s only protection while she is in this vulnerable state. In addition to protecting my mother’s safety in her home, now I need to defend against scam artists. Hospice and adult care scam artists are evil heartless people. I reported that Hospice organization. Their bullying ‘sales pitch’ was morally wrong.

Caring for a mother in her 90's is in itself already quite a challenge. But dementia sets an altogether different challenge, which you will know all about. And yes, you might not feel the term 'professionals' applies directly to your care, but all the specialists and clinicians in the world, can never address what you address, personally, as a child with a compromised parent, a mother living with dementia - that person-centred care which never ceases, despite the enormity of the role, which you apply at every waking moment.

And yes, one needs proper help at the right time, whether doctor, respite service, hospice or whatever. But the fundamental truth in CARE - which you are so evidently giving - is rather precious, as is the one who receives it moreso. This 'truth' in care, can often seem to go unnoticed outside the domain (home) in essence and 'pills' whilst playing their part, bear no resemblance to the day-to-day emotional, psychological impact of nurturing an elderly mother, who is unable to lead a 'normal' life any longer, through no fault of her own.

Your concerns are clearly very real (scam artists) and make for a degree of clarification for some of us here in the UK. But the 'care' element is universal and having played such a role myself for a mother in her 90's, with a dementia which claimed her life, I can but only offer heartfelt praise for your own care journey with your mother. It is really much more than a mere challenge is it not? It changes lives and outlook and despite the despair and pain, I feel makes one all the better a person in the end.

With warm wishes.

 

[Beate]

@emp Do you get people who do not have any other life limiting condition except for dementia? I was under the impression that in UK (as opposed to US) hospice care was not considered for people with dementia (as it is considered a social need rather than a medical one) unless it is was also present with another primary need - eg if someone with cancer also had dementia.

Interesting question. You have to have an incurable illness, but I'd say dementia falls under that.

https://www.nhs.uk/conditions/end-of-life-care/hospice-care/

 

[nita]

My mother had visits from the palliative care team under "Hospice at Home" and I was able to obtain a few hours' respite with their carers attending while I went out. This was about 2 or 3 years before her death. They did, however, stop providing this respite after a year as they said they had to make cuts, being a charitable organisation. We still had visits from a nurse who was supervising her medication. I think the Palliative care service was provided jointly by the NHS and a local hospice.