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Wondering what happens next

facline

Registered User
Jul 15, 2020
33
Birmingham
Hello again all - apologies in advance for another rambling post...

I visited my nan last Wednesday and again today. It is an Enhanced Assessment Bed as you thought it might be, @canary . The home seems okay but feels a little bit deserted with not many staff around. When we arrived, my aunt was down as visiting at the same time but she didn't turn up (neither her or my cousin talk to me and my mom anymore so we didn't know her plans, we'd just been keeping her in the loop with what was happening with my nan. She'd also apparently asked to be put down as the main contact even though she has never helped care for her, barely ever visits and had until recently just treated the dementia as a joke so this has understandably irked me and my mom. We're concerned she's trying to get involved with decisions when she won't know what's been going on like we do, as well as the fact that only 2 named visitors (which I'd put myself and my mom down as within 10 minutes of my nan arriving!) are allowed to visit at the moment - although the home doesn't seem to be taking notice of that anyway...). Aside from the usual confusion my nan seemed fine on Wednesday but there were some issues with getting help quickly enough for her to be given a bed pan. The carers who eventually came said she would just have to do it in her pad because she hadn't been assessed by a physiotherapist so they didn't know what type of sling she would need to be taken to the toilet. I said that we believe while she was in the hospital she had been using a bed pan so they finally gave in and agreed to assist her with a bed pan - saying that they were surprised she actually knew when she wanted the toilet.

Today she seemed fine and upbeat but very confused / delusional - couldn't remember us visiting on Wednesday (but could remember my aunt and cousin visiting two days ago) and was telling us story after story of people going missing but her finding them, sleeping over at someone's house, where she went last night and what she was doing but tbh that seemed to give her some happy "memories" so was nice to see in a weird way - certainly better than seeing her distressed because of hallucinations like we've been used to. There were some obvious issues today though: When we arrived there was no one in the office to let us into the building - luckily another visitor who knew the door code was able to let us in. When inside, there was no one to take our temperatures so we did it ourselves. When we arrived at my nan's room she was again waiting for someone to come and take her to the toilet or help her with a bed pan - nobody came while we were there (nearly two hours). The clothes we'd taken and hung in the wardrobe on Wednesday had all been thrown to the bottom of the wardrobe, two things were missing and there were two items of someone else's in there (we'd marked all labels with her room number). We don't think my nan could have done this as she isn't able to get out of bed without help. She wasn't wearing any of her own clothing, instead was wearing a tatty white t-shirt and a pair of incontinence knickers. The bathroom now had a wheelchair, sling and massive armchair thing (?!) in it with no room to move. When her lunch was brought, the carer just left it on the table in front of her but didn't move my nan or the table so she could access it easier - I thought (hoped!) perhaps she just did that as we were there so assumed we could help her instead? Whilst watching her try and eat, it became apparent that she is really struggling to use a knife and fork now and could benefit from help with this. My nan also had two big bruises on each arm which were new - she said that maybe they'd been done by people trying to lift her. We don't think she's been taken to any of the communal areas yet and my nan said "It's looked nice outside this week but they just leave me in here". She also kept referring to "being in trouble" if she "didn't do as she was told" and when asked who she'd be in trouble with she said "that woman". My mom is planning on calling the home tomorrow to address some concerns we have - are we okay to do that or will it look like we're interfering?

We still have no idea if she can walk at all and we've had no updates at all from any of the physios, OTs or doctors the new social worker told me she would be seeing weekly. The social worker forwarded me the financial assessment form which I filled out and got my nan to sign today. Apparently my nan will have a mental capacity assessment in a couple of weeks. We've been again asked if my nan just having 4 calls would be enough support for us to carry on caring for her - I'm just hoping that all of the professionals that will assess her now will be able to see that her returning home is just not a safe or viable plan for either her or my mother who is still in the middle of a mental health crisis and will be too ill to ever care for her again. We're also planning on moving out (and have been trying to do so for some time) so wouldn't be here to provide any care anyway. We just want her to get the best care and be able to be comfortable.
 

lemonbalm

Registered User
May 21, 2018
580
Hello @facline . From your post, it sounds as though the standard of care is really not good enough today. However, weekends are often a time when staff levels are low. Even the care-home my mum is in which is in general very good can appear less so on some days when there aren't really enough carers to go round.

Are you able to visit again soon and see if things seem better? If not, I think I would definitely voice your concerns. Keep a note of your concerns ready in case they have been addressed in between visits and, if not, have them to hand when you/your mum speak to the care home manager.

I'm surprised you were allowed to visit, by the way. Did you have to wear PPE?
 

facline

Registered User
Jul 15, 2020
33
Birmingham
Hello @facline . From your post, it sounds as though the standard of care is really not good enough today. However, weekends are often a time when staff levels are low. Even the care-home my mum is in which is in general very good can appear less so on some days when there aren't really enough carers to go round.

Are you able to visit again soon and see if things seem better? If not, I think I would definitely voice your concerns. Keep a note of your concerns ready in case they have been addressed in between visits and, if not, have them to hand when you/your mum speak to the care home manager.

I'm surprised you were allowed to visit, by the way. Did you have to wear PPE?
Hello @lemonbalm , I'd wondered about staff levels at the weekend so I will go again in a couple of days and see how things are.

We were surprised too! My nan went in last Tuesday and when I rang to ask how we would get clothes and toiletries to her the manager said we are fine to visit as long as it is just the two named nominated visitors and we book 24 hour in advance. However we now know that my aunt and cousin have also visited... So that is quite concerning in terms of infection control for... everyone?! They said we had to wear a mask but we also wear gloves and gel our hands (well, the gloves) every time we go through or out of a door.
 

lemonbalm

Registered User
May 21, 2018
580
Hmm, I would add that to your list. I hope that things have improved substantially on your next visit. Don't be afraid to voice your concerns if not. I expect other members will be along with more advice, so keep checking in.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,764
Nottinghamshire
Hi @facline . My dad was only in a carehome for less than 4 months before he died but in that time I managed to develop a good relationship with the manager. This helped me no end if I was ever worried about the standard of dad's care. I was lucky and we had very few problems but when we did I always started the conversation with a positive observation.

It does sound as though your nan's home could do better.
 

facline

Registered User
Jul 15, 2020
33
Birmingham
Quick update: I called the care home and spoke to the manager today and because of the answer I got I decided to only bother asking the first question on my list. I asked if my nan had been seen by a physio, OT or doctor yet as this is what I was told by the social worker would be happening and she said that the home are only providing the bed and they have no idea what's going on with my nan's care otherwise. Is this normal? The social worker is on leave until next week so can't contact them. The home manager also said that my nan had a video call with a GP on Thursday and he prescribed paracetamol for pain... I assume a member of staff assisted her with this as she wouldn't know how to do it (I'm surprised that they convinced her to do it!). But also... what pain? What GP? It seems like things are going to get messy again :(
 

lemonbalm

Registered User
May 21, 2018
580
Hello @facline. It seems common practice to prescribe regular paracetamol to people with dementia to help with any agitation or discomfort due to pain which the person often can't easily express. At least your nan has "seen" a GP. I assume this is one associated with the care home residents. I don't know if it's usual for nobody to cover for a Social Worker when they are on holiday. What happens if you call the number for the social worker?
 

facline

Registered User
Jul 15, 2020
33
Birmingham
Hello @facline. It seems common practice to prescribe regular paracetamol to people with dementia to help with any agitation or discomfort due to pain which the person often can't easily express. At least your nan has "seen" a GP. I assume this is one associated with the care home residents. I don't know if it's usual for nobody to cover for a Social Worker when they are on holiday. What happens if you call the number for the social worker?
Hello @lemonbalm, sorry for not replying until now! That's good to know re: the paracetamol. I tried to speak to the duty social worker all week but nobody called me back as planned - I think our assigned worker is back on Monday so fingers crossed I'll get some answers about what physio / OT / doctors have said then.

Me and my mom visited again today and was able to take her in a wheelchair (well, it's like a big armchair on wheels?) and sit in the sun with my nan and a few other residents (and one of the care teams dogs!) which was nice. Unfortunately we noticed more bruising, this time on her legs. The slight wound she has on her leg from her last fall seems to have gotten worse too (it isn't dressed). When we turned up she was annoyed that we'd "moved her from the place she was yesterday" and asking why we were there and what we were doing "about all of this" - she said she had been at her (dead) sister's house yesterday dancing with her and then someone "put her in a van" and she ended up "at this new place". She also asked if my grandad knew she was here (he's been dead over 20 years) and if he was coming to see her - weird as he would've been 90 today!

Does anyone have any tips on what to say when my nan talks about spending time with or asking to see dead relatives? This would be particularly useful for my mom who found the mentions of her dad quite upsetting.

Thanks all x
 

lemonbalm

Registered User
May 21, 2018
580
Hello @facline . Your visit sounds quite good. The visiting rules seem very much more relaxed where you are!!!

Your nan sounds quite confused but my mum is always this confused at the best of times even with medication.

At my mum's carehome, they photograph any marks or bruises for the care records. I think it is worth asking the social worker about that when you speak to her. My mum often has bruises as she is often very agitated and hits things (or carers). I would ask the care home staff/manager about the wound on your nan's leg and the bruises. It's not a bad thing to let them know you notice things and it sounds as though the wound may need some attention.

It's tricky when you're asked about people who are long gone. If my mum says "is Dad with you?" (never sure whether she means my Dad or her Dad) I usually say "just me here today mum" and change the subject. You can say things like "I haven't seen him/her today" or whatever you think may work. It's best not to remind nan about the fact that people have died, as it will feel like new news and cause distress. The only time I reminded my mum very gently that Dad had died is when she was so awfully distressed that he had left her (he didn't) that I thought she would find it less distressing. I gently said that he had died a little while ago but had always loved her and that her brain got in a bit of a tangle sometimes because of her stroke, and some memories fell out occasionally - not to worry. She just said "I'm a widow?" and then talked about something else! You may find that your nan thinks she has seen somebody recently who died long ago and it's best to say something neutral like "oh that's nice". You'll get the hang of it.

Rather a long post from me. I hope you got to the end. I also hope you get to speak with the social worker on Monday so that you can clarify a few things.
 

facline

Registered User
Jul 15, 2020
33
Birmingham
Hello @facline . Your visit sounds quite good. The visiting rules seem very much more relaxed where you are!!!

Your nan sounds quite confused but my mum is always this confused at the best of times even with medication.

At my mum's carehome, they photograph any marks or bruises for the care records. I think it is worth asking the social worker about that when you speak to her. My mum often has bruises as she is often very agitated and hits things (or carers). I would ask the care home staff/manager about the wound on your nan's leg and the bruises. It's not a bad thing to let them know you notice things and it sounds as though the wound may need some attention.

It's tricky when you're asked about people who are long gone. If my mum says "is Dad with you?" (never sure whether she means my Dad or her Dad) I usually say "just me here today mum" and change the subject. You can say things like "I haven't seen him/her today" or whatever you think may work. It's best not to remind nan about the fact that people have died, as it will feel like new news and cause distress. The only time I reminded my mum very gently that Dad had died is when she was so awfully distressed that he had left her (he didn't) that I thought she would find it less distressing. I gently said that he had died a little while ago but had always loved her and that her brain got in a bit of a tangle sometimes because of her stroke, and some memories fell out occasionally - not to worry. She just said "I'm a widow?" and then talked about something else! You may find that your nan thinks she has seen somebody recently who died long ago and it's best to say something neutral like "oh that's nice". You'll get the hang of it.

Rather a long post from me. I hope you got to the end. I also hope you get to speak with the social worker on Monday so that you can clarify a few things.
I know @lemonbalm, I was so surprised we could visit and so often, too! Looks like my aunt and / or cousin are still visiting too as their were more chocolates in my nan's room so that's a bit concerning as it's against their own COVID-19 policy as I mentioned before...

Thank you so much for the tips, really useful. I keep thinking that as long as it's not distressing her, that's her reality now and I should try and respect that. I suppose with my grandad I'm just a bit worried that she'll think he's purposely not visiting her :(
 

MartinWL

Registered User
Jun 12, 2020
232
Regarding the LPA it does not sound as if your grandmother has the required mental capacity to sign it herself. If that is the case you will need to apply to the court of protection to become a "Deputy". A more difficult process I am afraid.
 

facline

Registered User
Jul 15, 2020
33
Birmingham
Regarding the LPA it does not sound as if your grandmother has the required mental capacity to sign it herself. If that is the case you will need to apply to the court of protection to become a "Deputy". A more difficult process I am afraid.
Hi @MartinWL , yes, I had been reading about that recently and was worried that's the option we'd have to take. My nan was having lucid days but this seems to be getting less often now. I got her to sign the financial assessment form last Sunday and I felt that she understood what it was for (she keeps worrying about having to pay for things so I think it put her mind at rest slightly). It's so frustrating because I'd mentioned the LPA to her on a "good day" after the deterioration became noticeable and went through the options with her and she agreed to me and my mother signing it - it was just the GP that got in the way of us being able to see the process through before it was too late :( Apparently the social worker is going to do a mental capacity assessment next week... I'm not even sure a deputyship would be something we could afford - what would happen if we had nothing in place?
 

facline

Registered User
Jul 15, 2020
33
Birmingham
Hello again all - just had a quick update from the social worker about my nan. She couldn't do the mental capacity assessment today as planned as my nan has some kind of infection and is still taking antibiotics. She's been discharged from physio again as she can't follow instructions. She definitely still can't walk and is having to be hoisted. SW confirmed that she needs a nursing home now rather than a residential so the one we picked out before she went into hospital is no good :( She also confirmed that we need to get a solicitor and look at deputyship ASAP... This concerns me as me and my mom have very limited funds and needed the money we do have to find another place to live. And all because our GP refused to sign the LPA when we asked!! Are there any legal aid services for this kind of thing? Thanks all.
 

Louise7

Registered User
Mar 25, 2016
2,378
@facline If your nan has lost capacity then deputyship will be required but this can be done without a solicitor - members here who have been through the process will hopefully post to provide you with some details. In relation to applying for property & financial affairs deputyship, the fee is £365 however you and your mum aren't responsible for paying this - the fees should come out of your nan's money. If she has less than £16,000 she should qualify for a reduction in her fees. These links will help to explain the process:

https://www.gov.uk/become-deputy/apply-deputy

https://www.gov.uk/become-deputy/fees

https://www.gov.uk/government/publications/apply-for-help-with-court-of-protection-fees-form-cop44a
 

facline

Registered User
Jul 15, 2020
33
Birmingham
@facline If your nan has lost capacity then deputyship will be required but this can be done without a solicitor - members here who have been through the process will hopefully post to provide you with some details. In relation to applying for property & financial affairs deputyship, the fee is £365 however you and your mum aren't responsible for paying this - the fees should come out of your nan's money. If she has less than £16,000 she should qualify for a reduction in her fees. These links will help to explain the process:

https://www.gov.uk/become-deputy/apply-deputy

https://www.gov.uk/become-deputy/fees

https://www.gov.uk/government/publications/apply-for-help-with-court-of-protection-fees-form-cop44a
Hello @Louise7, have been looking through all of that today and, without sounding like a horrible person, I really don't think I have it in me to do this. It would be all down to me as my mom is too ill to deal with it. I will be moving away and won't be having any contact with my nan once she is settled in her long term home so wouldn't be able to do things like the annual report of decisions because I simply won't be around to make the decisions! I hope this doesn't make me seem like I don't care - there are a number of personal reasons (my own health being one of them) which I won't go into here that have contributed to me effectively handing over care to professionals once my nan is in a place of safety. I don't think we'll need a financial affairs deputyship as my nan doesn't own her home, has no savings and my mom's name is already on the joint account as well as her will. I could ask my aunt to do it but she has been utterly useless so far in terms of providing care assistance and as it stands now she is ignoring us completely.

If there is no one to take care of the deputyship, what would happen?
 

Louise7

Registered User
Mar 25, 2016
2,378
If there is no one to take care of the deputyship, what would happen?
You are not obliged to take on deputyship if you don't want to, and it definitely doesn't make you a horrible person or someone who doesn't care. If there is no one in the family willing to take on the role then the local authority can take this on - let the social worker know that neither you or your mum will be able to take on the deputyship role due to health reasons.
 

facline

Registered User
Jul 15, 2020
33
Birmingham
You are not obliged to take on deputyship if you don't want to, and it definitely doesn't make you a horrible person or someone who doesn't care. If there is no one in the family willing to take on the role then the local authority can take this on - let the social worker know that neither you or your mum will be able to take on the deputyship role due to health reasons.
Thank you @Louise7, I'll do that. I feel like I'm abandoning her but I just wouldn't be able to cope with the responsibility.
 

Louise7

Registered User
Mar 25, 2016
2,378
@facline You haven't abandoned your nan, you're making sure that she is safe and well cared for. You need to think of your own health and make decisions that are right for you, as difficult as they may seem at the time. Take care.