Caring from a distance

[Sporadic gardener]

I really wish there was a forum on here for people like me who are doing their best to care for PWD from a distance. I find useful tips here and there but not in one place.

Anyway I am learning many lessons over 3 years of trying to put in place more support for my 85 yo aunt. She received a diagnosis of MCI 2 years ago but she is excellent at masking the extent of her needs. For 3 years she has been unable to do her own laundry but tells doctors she does it, she doesn't notice filthy clothes or house if her home help doesn't deal with it (which she does but the pandermic was a revelation). She is now not able to do any administrative tasks without help and I spend every visit trying to make sure there is nothing urgent that needs tackling. But she claims she deals with it all. She eats frozen meals delivered to her but tells the doctor she still cooks and shops. The doctors have recently woken up to the fact that things are not as she portrays as she stopped collecting her meds but still claimed she was taking them. To try to deal with all this I have recruited a home help locally and have a small network of friends and relations to help. My aunt recently agreed to me registering the LPA with the bank so that I could help monitor for fraud or make transactions for her if she asks. However she still insists she can manage - which she can't- and this means I will only be able to help when I am face to face with her. I live 90 miles away so can't go every weekend. For now I will have to continue as we are. I am really unclear at what stage I can act on her behalf in her interests if she is still considered to have capacity but lacks insight. I am erring on the side of caution to ensure I have things about finances in writing but this means each visit will continue to involve a load of admin rather than a nice day out - which she also needs. Does anyone have any advice about how to deal with this situation? I now have contact with the memory clinic but they are struggling to assess her as she doesn't admit to problems and won't allow anyone to attend with her, if she attends at all.

 

[canary]

Hi @Sporadic gardener

Im afraid that this loss of insight so that they think they are doing things tht they are not is absolutely typical. Some people with dementia retain insight, but most do not.

Even if someone goes with them it is difficult to contradict them in front of the doctor. I have found that the best way of dealing with this is to write letters to doctors bullet-pointing your concerns. Write to the GP, so that your letter will go into her records, and write to the doctor in the memory clinic (try and find out his name if you can) before her appointment, so that the doctor is told the truth of her situation.

Something else to consider is that if she is going on her own, you may not get the truth about what has been said to her. My OH was going to appointments on his own and was coming back telling me all sorts of things that had apparently been said, that I later discovered were completely untrue.

 

[Sporadic gardener]

@canary thanks for this advice. I have started sending any emails to the GP and memory clinic together as they don't seem to communicate. It's a start!

 

[Yankeeabroad]

Hi @Sporadic gardener

my sister and I are Long Distance Carer/s (LDC) for my dad and mom (before she passed). My dad is in the US (90 miles away seems like a luxury!) so I can’t advise on exact details in the UK but advise in general.

I’ve ensured the right paperwork is filed with all doctors and pharmacy that allow me to have full access to medical information. Most of their doctors would let this slide but it ensures you can have access. My sister or I call/FaceTime into appointments but have said it’s for “note taking” purposes as it’s very overwhelming to try to remember what the doctors say. We often communicate in writing any concerns and the purpose of the visit beforehand. As my dad’s condition progresses, I find the doctors are now very comfortable speaking with me directly.

I use the conference function on my mobile phone a lot — so we can talk to the bank/credit card company/etc at the same time and he can give me the authority to speak. From his point of view, I’m only there again for note taking. I’ve ensured the team at his local bank branch (luckily he’s still got one) and other local shops know me and have my local number and I have theirs.

We have found a scheduling system that works for my dad — paper calendar plus “dementia clock“ -- that he feels is his and in his control.

One thing I learned is not to try to force them in to acknowledging their condition or make them feel bad by saying “you can’t do this” or “don’t you remember…”. So for example when my dad went thru a phase of forgetting to lock the door, I’d say oh Jane came by earlier and I always forget to lock the door. I’m going to check now, why don‘t you check yours as well? I try to make them part of the decision process which gives some ownership and buy in — my parents didn’t have a choice about having a caregiver but had input into the selection process, hours, and feedback on their caregiver (we changed due to their feedback). My dad has aphasia/dysphasia (which he acknowledges) and I can often fall back on that — it’s not that I think you can’t do xyz, it’s just I’m worried you won’t be able to fully communicate xyz.

Also remember that some things will just happen and you have to let it slide if it’s not life threatening.

 

[cobden 28]

I really wish there was a forum on here for people like me who are doing their best to care for PWD from a distance. I find useful tips here and there but not in one place.

Anyway I am learning many lessons over 3 years of trying to put in place more support for my 85 yo aunt. She received a diagnosis of MCI 2 years ago but she is excellent at masking the extent of her needs. For 3 years she has been unable to do her own laundry but tells doctors she does it, she doesn't notice filthy clothes or house if her home help doesn't deal with it (which she does but the pandermic was a revelation). She is now not able to do any administrative tasks without help and I spend every visit trying to make sure there is nothing urgent that needs tackling. But she claims she deals with it all. She eats frozen meals delivered to her but tells the doctor she still cooks and shops. The doctors have recently woken up to the fact that things are not as she portrays as she stopped collecting her meds but still claimed she was taking them. To try to deal with all this I have recruited a home help locally and have a small network of friends and relations to help. My aunt recently agreed to me registering the LPA with the bank so that I could help monitor for fraud or make transactions for her if she asks. However she still insists she can manage - which she can't- and this means I will only be able to help when I am face to face with her. I live 90 miles away so can't go every weekend. For now I will have to continue as we are. I am really unclear at what stage I can act on her behalf in her interests if she is still considered to have capacity but lacks insight. I am erring on the side of caution to ensure I have things about finances in writing but this means each visit will continue to involve a load of admin rather than a nice day out - which she also needs. Does anyone have any advice about how to deal with this situation? I now have contact with the memory clinic but they are struggling to assess her as she doesn't admit to problems and won't allow anyone to attend with her, if she attends at all.

I don't live as far away from my elderly Mum (92 and with Alhzeimers) as some folk do, and it does worry me that I can't do more for my Mum. She has only three known living relatives in the world - myself as daughter and next of kin, my adult daughter (32) and a male cousin living up in Yourkshire. . Mum has lived in her bungalow in Southampton since 1977 and alone since my stepdad died twenty years ago. Neither my daughter nor I drive so we can't be popping up to Mum's every other day, and Mum is as deaf as a post & refuses to wear her hearing aids at home so phone calls are next to impossible. Although a retired civil servant, Mum retired before the introduction of computers and the internet so doesn't have the internet or believe it necessary so it's very difficult for my daughter and I to find out what's going on with Mum.

She does have a close friend/carer who lives a lot nearer that daughter & I so her friend holds both LPA's for Mum and organises Mum's life for her. Emma (daughter) and I would love to be able to do more for Mum but we don't live in the same city as Mum and because neither of us drives it's simply impossible for us to be of any practical help to Mum.

Emma and I are very appreciative of what helen does for Mum; we have a Whats App group chat set up between the three of us so Helen (friend/carer) can keep us regularly updated about Mum. I don't know how we'd manage to keep an eye on Mum without the internet and WhatsApp for arranging all Mum's medical appointements etc.

 

[JessN12]

I have no real advice but just wanted to say I am caring from afar and its really bloody hard and I really appreciate what you're going through

 

[Sporadic gardener]

Thanks all for your sympathy. @cobden 28 I also rely heavily on a network of my PWD's friends, some nearby and some at a distance. We have a what's app group to share information as it's so difficult to tell what is really going on from what she tells us all. Sometimes she mentions appointments to her friends of the same age, but rarely tells me. The what's app group has been critical to passing information between us without endless emails. Most of the time my PWD just insists she is fine and gets very sensitive about any suggestion she should do something. So when any of us bisit we can rapidly update each other or glag issues she mentions on the phone,when she does.

my PWD refuses to allow anyone else to attend appointments with her. I'm afraid she is a more difficult person to deal with than your father @Yankeeabroad but I totally agree with your approach to avoiding suggesting she can't do something and ensuring she set making decisions and feels in control as far as possible.

I don't have the health LPA registered yet so communication with doctors is difficult but I hope once that's through it will get easier. If she allows 'note-taking', I think that's a great suggestion when it gets to that stage. But at the moment she rarely attends appointments herself and the memory clinic has to go to her house to see her. She is not taking her medication which seems to have finally spurred doctors into more action but I think we are falling between cracks in the Nhs and social care at the moment to arrange help for her to remember her meds. It just takes persistence, and adaptation as we hit a new challenge. Thanks for the sympathy @JessN12

 

[RNcaregiver]

Hi @Sporadic gardener. I was a long distance carer (oldest daughter) for years. We lived four hours apart. It’s very taxing and my mother would literally call and text me non stop all day. As her dementia worsened, it got to be too much to bare. I, too, was trying to talk to her PCP, who was telling me she saw no signs of dementia (HOW???). My mother would go to the doctor every week and call them constantly about nothing, but it’s like nobody wanted to make a diagnosis.

This was one of the main deciding factors for moving her to my city and subsequently finding a care home 5 mins away from me. I tried her living with me for a few months, but she had worsened beyond my care capabilities. She had friends who would look in on her at home but the dementia just got to a point where they started calling me with their concerns. So not only was she calling me, but her friends and our family started calling me too! The anxiety of being a long distance carer is a just an additional layer to the anxiety of being a caregiver. I hope you get some relief soon!

 

[Welshman1969]

Hi

I'm 250 miles away 4 hour drive minimum from my father who has vascular and my stepmother who has alzheimers they are 80 and 84 respectively.

They are deteriorating and I'm totally lost as to what support I can get for them

 

[Sporadic gardener]

Hi

I'm 250 miles away 4 hour drive minimum from my father who has vascular and my stepmother who has alzheimers they are 80 and 84 respectively.

They are deteriorating and I'm totally lost as to what support I can get for them

Hi Welshman, so sorry I never replied. I was traveling when you sent this and the it slipped my mind. I hope things have moved on from this point for you.

I am not sure I can offer much help as I have only had limited success in getting my pwd help from services but you may be in a better position if they have a diagnosis. I assume you have power of attorney so can speak to their GP. If they are struggling with day to day self care you should be able to request an assessment by social services. They have a duty of care. With GPs I find it's persistence that matters. They are so overloaded it needs determination. Much changed for me when I wrote our concerns and eventually were referred to the specialist frailty team whose job it is to prevent hospitalization. That has helped a lot. I also found a firm called extra help that have local franchises that support independent living. Having a home help drop in weekly has been a godsend. They don't provide care. They rovide practical support which is what my pwd actually needs. I am also in touch with various friends of hers to help locally. When I go I stay overnight to get a better sense of what is going on and track down any admin problems looming. Others may be able to help on other channels. Hope this is a bit of help to start with.

 

[try again]

If you have lpa finance then you can get the internet put in for her. Put the modem somewhere out of the way. You at least then can explore things like an echo show for calls/drop ins and other bits of tech.

 

[Toopie28]

I'm in USA and Ma in UK. Halfway across the world.
However I don't think that it matters if you are 70 miles away or 7000 (me) miles away. It's still caring from long distance. And it's brutal!!!
But that's the key - support. Be it from family, friends or paid carers. This can be done with support.

Every situations is different and difficult in their own way.
I don't have any support. I have people that do what they want, when they want. And I pay them for it and have to be quiet about it.
I have been tortured for 3 years with "Oh, we'll do anything for your mum" then when asked, they become invisible. Her son would throw her in a tent in the middle of the road if it were up to him.

I believe the POA is an absolute - this will help with so much. (finance and doctors, the latter albeit grudgingly)

@cobden 28 - I have a plethora of cameras around the house. Ma also doesn't understand technology so I "drop in" on Alexa. It's a double edged sword though. I monitor her every movement. I spend most of the life doing this. Which equals no life so I'm hesitant to even suggest them.

 

[Twopoodles]

Yes agree POA is a must so much we couldn’t do without it. Mums Dr had an app so could see all her medications and appointments that was really handy although mum couldn’t attend appts by herself. we had a camera and Alexa show where we could drop in to talk to mum which was a godsend as after going through the 30 calls an hour stage and dialling the weather line costing a fortune mum wasnt able to use the phone. Unfortunately as someone else said it became a double edged sword as watching so much especially once we got carers in. We had live in and daily it was shocking so we spent a lot of our days battling the care system. We arranged food deliveries but could only do that when she had live in care. We had deliveries from the chemist using an app so could see what was being delivered and if new meds had been added to the dosset box. It was amazing how many times this failed and you wonder how people manage who don’t have people overseeing their lives. It was a very hard time as mum didn’t want help so we really had to sneak around organising things and it was pure luck we got the POA as luckily her neighbour had it with his son so she accepted it once knew Ken had it and there was nothing wrong with him either 🙂