Hi. First post. Introducing myself . I'm 58 live in the States and just got back from a trip to visit Mum. She just turned 90 and two years ago suffered a stroke which deprived her of the use of her body's right side. She had some "mild cognitive impairment" but the damage seemed mostly physical . My sister and her husband moved in to take care of her in January 2020. My sister had noticed an uptick in dementia like symptoms over this time and its been really really hard on them both. We have been unable to get a formal diagnosis because my mum refuses. Cut to now. During my visit it became clear to me and my google searches that mum has probably got full blown Vascular Dementia ..like stage 4/5. My sister and brother in law are "done"/at their wits end and I'm back in the USA wondering what on earth to do. Mum hates the idea of a home/she's very proud and has always been super independent. She hates to think that she is mentally impaired in any way for the above reasons and more.. I think she finds it overwhelming/frightening. She is capable of getting dressed/bathroom duties/making tea/sandwiches but that's about it. My sister and I are looking to see if it will be possible to get sufficient home care to give her a safe and meaningful life while simultaneously allowing my sister and her husband to go back to some kind of semi normal/like no longer living with her/going back to work. There. I've said too much/haven't said enough. I know there is a lot to unpack but I/we are kinda lost/can't find the maps for getting to the next place. Any and all suggestions are welcome. Thank you all in advance. Superubes
Hello everyone. This seems like a lovely place for difficult subjects .
- Thread starter Supertubes
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Hi @Supertubes and welcome to Dementia Talking Point our supportive and friendly community. I am sorry to hear about your mum. I am not quite clear whether she is UK based or in another place within the USA.
That doesn't matter much as we are a mainly UK based site, with several international members. There will no doubt be differences in terminology and other issues
But Dementia knows no boundaries and I am sure that the vast experience of our members will be invaluable. Come here to read, ask questions or just to vent. You'll always find someone to listen.
That doesn't matter much as we are a mainly UK based site, with several international members. There will no doubt be differences in terminology and other issues
But Dementia knows no boundaries and I am sure that the vast experience of our members will be invaluable. Come here to read, ask questions or just to vent. You'll always find someone to listen.
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I am assuming that your mother, sister and brother-in-law live in the UK. You don't mention paid carers and so I assume that your sister and BIL have been providing all the care, which must be / have been really tough for them. I think that you need to have a frank conversation with your sister and BIL to see what they want to happen. Would they consider paid carers visiting two, three or four times a day to see whether they would provide enough support for them (your sister and BIL) to step back? If so, and your mother is a self-funder, then they could go ahead and arrange this if they have PoA for property and financial affairs. If your mother will not be self-funding then Social Services would have to carry out a needs assessment and arrange the care through an agency. Be aware that SS tend to drag their feet if there are family member around, particularly if SS will be funding the care. Sometimes family members who have reached breaking point have to threaten to step away completely before anything happens. It is unlikely that SS would fund a care home before visiting care at home has been tried and has failed.
People with dementia tend to be resistant to any changes to their lives. Their default response is invariably 'no'. For this reason there is no point asking for their agreement to, say, paid carers coming to the house because they will just refuse and nothing will change. Instead, you just have to arrange whatever you think is needed and go ahead using subterfuge and love lies as appropriate. Some people start with a cleaner ('all middle class ladies have them now' / 'this is a government scheme' / 'this poor lady needs a job' etc) to get their relative used to the idea of 'strangers' coming to the house and work up from there.
People with dementia tend to be resistant to any changes to their lives. Their default response is invariably 'no'. For this reason there is no point asking for their agreement to, say, paid carers coming to the house because they will just refuse and nothing will change. Instead, you just have to arrange whatever you think is needed and go ahead using subterfuge and love lies as appropriate. Some people start with a cleaner ('all middle class ladies have them now' / 'this is a government scheme' / 'this poor lady needs a job' etc) to get their relative used to the idea of 'strangers' coming to the house and work up from there.
Thank you so much for your reply Violet Jane. Yes Sis and BiL are in the UK with Mum. I'm back in the States trying to see what/if anything I can do from here. I'm a single dad with a 10 yr old kid so I can't come back for a lengthy stay otherwise I would. Mum has been assessed and declared to be self funding/she's got no savings at this point but she has a decent pension and apparently this means she/we are on our own. Live in care is out of our league but we might be able to ..just/until energy goes through the roof.. get carers in a couple of times a day most days of the week. I had a phone call with SS when I was there and you are entirely correct they will not involve themselves unless an "emergency situation" is triggered. That would be my sister up and leaving. Not there yet but not so far away either. Pro activity is not a thing w/them. The lady was nice "I'm not being very helpful am I?"
You are also correct about Mums default position being no. It's behind everything and massively informs any decision about moving in to a home. Or getting a diagnosis. Or going for a walk. Or going to church/seeking any kind of community. But she has expressed a strong preference to remain at home and that's what we are going to go with until such point as it becomes untenable. She knows she's gonna need carers for this so we don't need to persuade her any.
What I'm worried about is how much care is enough? And I guess I won't know the answer to that until we find it. And how to find it.. the Google turns up a million different companies offering their services but I have no idea where to start or how to evaluate them from this distance.. Sis and Bil are gonna have to step in there . Do you have any tips/ recommendations for finding solid home care? Thanking you for taking the time to reply. Supertubes.
Thanks for your reply. My mother and My sister and Bil are in the UK.. I'm back in the Staes trying to figure out how I can help at such a distance.
Thanks for clarifying. I would say that you'll have a hard job making a practical difference at such a distance. By being a conduit to information on this site and elsewhere, however, I am sure that you can make a valuable contribution to your Mum's welfare.
Yup. A lot of stuff you need to be in place for. However I can make phone calls and make Google searches and I can aggregate resources and come up with suggestions and plans.. You know do all the administrative work . This website is super helpful on so many levels . Dealing with dementia and care is overwhelming and isolating and not something we have ever done before. Just reading about others' experience makes it feel a bit less lonely/intimidating. We'll get there. Wherever "there" is.
The Care Quality Commission (CQC) inspects and rates care agencies and care homes. There is also a site called homecare.co.uk which has reviews a bit like TripAdvisor. I don't think that introductory agencies (i.e. companies which find carers for you but don't have any further involvement afterwards) are covered by the CQC. Costs and terms and conditions vary a lot by agency. Some of the 'posher' ones won't do visits shorter than an hour in length, which I'm not saying is a bad thing but of course it will ratchet up the costs. Live-in care is also possible but it may well cost more than a care home when everything is taken into account.
I hope that your mother is receiving Attendance Allowance, which does not necessarily require a diagnosis. A Council Tax discount for 'Severe Mental Impairment' is also available in most LA areas but I imagine that this would require a dementia diagnosis.
I think that you need to be guided by what your sister and BIL want to do as they have clearly reached breaking point. Visiting carers may not be enough to enable them to really step back as much as they want as the remit of visiting carers is quite limited and there will be long periods of time when your mother will be on her own.
I hope that your mother is receiving Attendance Allowance, which does not necessarily require a diagnosis. A Council Tax discount for 'Severe Mental Impairment' is also available in most LA areas but I imagine that this would require a dementia diagnosis.
I think that you need to be guided by what your sister and BIL want to do as they have clearly reached breaking point. Visiting carers may not be enough to enable them to really step back as much as they want as the remit of visiting carers is quite limited and there will be long periods of time when your mother will be on her own.
My sister took voluntary redundancy to be able to care for mum so she could remain living independently, we paid my sister to work for 20 hours a week with myself and my brother calling in every day as well. But it became obvious that mum needed more support with meal preparation etc so we asked around for recommendations of local care agencies to cover three days a week, a two hour visit each day to cook a meal and chat to mum. I introduced them as friends initially who had just popped round for a cup of tea, luckily mum soon accepted them as her friends so was comfortable with their visits.
As far as getting the initial diagnosis, I kept a diary of our concerns over a few weeks, listing each incident very briefly ( eg unable to use tv remote, thinking strangers were putting food in her fridge.) as bullet points and sent it to her gp. I asked him not to mention my letter to mum so he “tricked” her into the surgery for a blood test! That then started the process of further tests and a diagnosis.
This kind of subterfuge is very common when supporting people with dementia.
As far as getting the initial diagnosis, I kept a diary of our concerns over a few weeks, listing each incident very briefly ( eg unable to use tv remote, thinking strangers were putting food in her fridge.) as bullet points and sent it to her gp. I asked him not to mention my letter to mum so he “tricked” her into the surgery for a blood test! That then started the process of further tests and a diagnosis.
This kind of subterfuge is very common when supporting people with dementia.
Thanks Again !! I'mma check on the attendance allowance. We would need the diagnosis for the mental impairment/council tax thingy. The long periods of time on her own is what keeps me up at night. I'm hoping that I can arrange/get some kind of balance between paid care and help from volunteer orgs and maybe as my sister and BIL step away the council would step it up? Making a bunch of calls today.
Solid suggestions. Thank you! I was going to email her GP explain the situation but I think the idea of documenting is better.
I applied for Attendance Allowance for my wife and was given the lower rate. This was based on needs during the day. The form was long, repetitive but not too complicated. Later, as her needs increased I was able to laim the higher rate which covers things that are needed after hours - supervision to stop wandering, toileting, medication etc.
www.gov.uk
For council tax I needed my wife's GP to sign a Severe Mental Impairment form. My wife had been diagnosed by then. I also needed to show that she was receiving Attendance Allowance.
Attendance Allowance
Attendance Allowance helps pay for your personal care if you've reached State Pension age and are disabled - rates, eligibility, apply, claim form AA1.
For council tax I needed my wife's GP to sign a Severe Mental Impairment form. My wife had been diagnosed by then. I also needed to show that she was receiving Attendance Allowance.
Thank You so much. I'm slowly starting to come up with a plan. Writing lists/assembling info/websites/bookmarks/ making calls. I'm not in the dark like I was.. literally middle of the night with the panic attacks...
Generally, if the person lives alone the discount is 100%. The 25% discount applies where there is another adult (who is taken into account for Council Tax purposes) living with the person. You should check the rules for your mother's own local authority.
Social Services should carry out a needs assessment regardless of whether the person is or is likely to be self-funding. This could be important if family members do not all agree what care is needed and there could be accusations that the person holding a financial PoA is spending the person's money unnecessarily.
@Supertubes, it is great that you are wanting to get more involved but I do caution you to tread carefully around your sister and BIL. If you start implying that they should have put things in place or found out about things sooner it is unlikely to go down well. When you are in the eye of the storm of hands-on caring you don't always have the time and energy to research things, chase people etc; you are too busy dealing with whatever needs to be done there and then.
Social Services should carry out a needs assessment regardless of whether the person is or is likely to be self-funding. This could be important if family members do not all agree what care is needed and there could be accusations that the person holding a financial PoA is spending the person's money unnecessarily.
@Supertubes, it is great that you are wanting to get more involved but I do caution you to tread carefully around your sister and BIL. If you start implying that they should have put things in place or found out about things sooner it is unlikely to go down well. When you are in the eye of the storm of hands-on caring you don't always have the time and energy to research things, chase people etc; you are too busy dealing with whatever needs to be done there and then.
Thank you again. I get it 1000% with Sis/BIL. I know they have been up to their necks in the psychodrama of it all. Moving in with Mum would have been difficult for them at the best of times/for all the issues/all down the years. Now we have dementia in the picture and have hit the breaking point. I am in contact with them/I just messaged them a long list of what I've come up with so far and I'm being super careful not to frame anything judgmentally. As a matter of fact I'm in awe of what they have managed to do so far/just by being in place. I think/hope that comes across. I'm very clear about how grateful I am and I'm trying to frame everything as coming from me as help and as a natural turn of events/my turn to shoulder the weight. Mum's decline has been relatively sudden/shocking. I was back there in November and the difference between then and this past July was dramatic. Hence the urgency/hence my jumping in. I didn't realize it was as bad as it is/was even though I was calling her almost every day. She presents well and in day to day conversation/casual interaction its hard to tell. It took me about 10 days of being with her/getting into crazy arguments/shouting matches/being amazed by her coldness/judgement/lack of empathy/irrationality to finally hit the google button for Vascular Dementia and having the whole thing fall into place. I felt like an idiot for not clocking it sooner. Then I felt terrified for everyone and then relieved that I had an explanation. And then I stared using a very gentle voice around her and things got better. Onwards!!
