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Who am I ? I won't know myself soon!!!

Woo2

Registered User
Apr 30, 2019
2,760
South East
Oh that sounds pretty good , Mum sounds happy and calm , if bored the worst she feels then that’s a bonus . Glad you spoke to her . I would hazard a guess that bits are in isolation too for a few days . X
 

Sarasa

Registered User
Apr 13, 2018
1,798
Hopefully your mum gets reunited with her DVDs soon, it must be very boring for her at the moment, but at least it won't be for too much longer. It's good to hear you can have a nice conversation without her getting too stressed or upset. Long may it continue and may things continue to improve after she can mix with the other residents and you can visit.
 

annielou

Registered User
Sep 27, 2019
1,700
Yorkshire
thanks xx Yes she didn't sound bad really, quite jolly almost, I think she was glad of someone to talk to. It must seem boring for her, mum used to get bored on her own before and often needed suggestions on what to do, or she'd wait till she saw me doing something before she'd do it. I hope if her things are in quarantine they remember to give her them when it's safe to do so. Next time me or my sister rings we'll try remember and ask if got them and about quarantine.
At least when I rang mum wasn't upset or too confused, I'm sure that she is still having those times, but if she's having times when she's not that's good. I heard her saying to lady who took phone up, You can sit down if you like love, while we were on the phone and when mum asked her and she said mums DVDs were downstairs and she could bring them up mum said Thank you love, so she's being nice to them in her good moments at least. So all in all I'll chalk the call up to a good thing. x
 

Bikerbeth

Registered User
Feb 11, 2019
1,614
Bedford
So pleased you took the plunge and made the phone call. It sounded good for both of you. I thought quarantine for the DVD’s like Louise7 said. The covers could be wiped over but they probably would not have wanted to do that with the DVD’s themselves. If I take Mum magazines they are held for 48hrs. It sounded good that the staff don’t mind the phone calls especially whilst your Mum is in isolation.
Now Annielou it is time for you to try and relax for at least 30 mins plus each day. Hopefully you are also able to sleep better knowing that your Mum is safe.
 

DianeW

Registered User
Sep 10, 2013
762
Lytham St Annes
Sounds really good phone call and I bet it’s definitely reassured you a bit?

Please don’t feel your mithering...this is your Mum and you have the right to ring.

Maybe jot down any questions you have and ask them next time you ring in...eg

Has your Mum got everything you took in for her including her duvet?

How can visiting be arranged and what is the procedure?

Are you ok to ring and speak to her every day, couple of days?

They are going to like your Mum because she is a nice person and when she is moody, confused etc, they will understand it’s her illness doing it.

She will find more distractions once isolation ends, and I’m sure she will enjoy chatting and joining in some things.

In my husband home they often have films, and the residents have a sherry or beer etc, and crisps, sweets or popcorn....they love it. He keeps taking in films they ask for, last night it was - paint your wagon, last week it was calamity Jane....good job we have loads of these types of old films.

Not everyone joins in but quite a few love it.
 
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annielou

Registered User
Sep 27, 2019
1,700
Yorkshire
thanks xxx
I feel bit better for talking to mum yesterday. Though I'm still a bit nattery about her stuff cos though it makes sense it could be that, nobody said it had to be quarantined and I'm hoping that's all it is and she will get it all soon. Today will be the 6th day she's been in there so I'd hope they'd be able to give her her things by now if they are in quarantine. I should have asked yesterday but I was thrown by talking to mum and didn't think of it till afterwards but will ask next time ring.
I asked the first morning I rang the CH if it was ok to ring them and how often and they said anytime and said it again yesterday after I spoke to mum, they also said they'd ring if mum needed anything or they had any concerns. So they sound like they're ok with calling but I don't think I'll ring every day as I'm sure they have enough to do and probably will only have the same thing to say, she is still wandering and getting upset and bored at times and is ok at others.
I'm struggling to stop thinking about mum all the time, worrying about her, and feeling sad and guilty that she's someplace strange with no one she knows with her, living in one room with hardly anything of hers with her and unable to go anywhere. I know at home she didn't always know where she was but she sort of knew it and knew a lot of the things in it, I know she didn't often know I was her daughter but she thought I was someone she saw who cared about her most of the time, I know she couldn't go anywhere safely on her own and didn't really go anywhere for a while only to my house and then often wanted to go home soon after she arrived but now she can't go anywhere. I know that's cos of her having dementia, though I still feel that maybe I could have done things different and better and we might not have got to this stage as quick. And whether its my fault or dementia's fault poor mums is still stuck in a shrunken confused world and I feel so sad for her.
 

Sarasa

Registered User
Apr 13, 2018
1,798
@annielou, all those things you are feeling are perfectly natural. I feel the same about my mum. Only today I was thinking if only she'd been more accepting of having help coming in she could have stayed at home longer, then when I thought about it, I realised that wasn't possible. She would have been rowing with whoever was trying to help and still getting into pickles when they weren't around.
None of this is your fault though I know it feels as though it is and that if only you'd done x, y or z things would be different. I think the thing to do is to try not to dwell on it too much. Your mum is in a safe place, that sounds kind and caring. As soon as she is out of quarantine I'm sure she'll settle in and enjoy the activities and make some friends.
Can you start to do something that you want to do? Get back to your craft stuff for instance.
 

canary

Registered User
Feb 25, 2014
13,603
South coast
I know, I know, theres always this feeling that if only you'd been better organised or done something else, or differently then you could have prevented them having to move into a care home, but its simply not true. You couldnt do anything because she was not recognising you and kept on wanting you to leave and the problems were not so much when you were there as when she was on her own,

Caring for someone with dementia is less about keeping them at their home, or being cared for by family as having the best care and this is often done best in a care home. Once mum settled she was much, much better cared for than she could ever have been in her own home. She no longer recognised her own home, so in her mind she was in a strange place, on her own, frightened and lonely.
 

annielou

Registered User
Sep 27, 2019
1,700
Yorkshire
Thanks @Sarasa @canary xx
Even when I think it's not my fault I still feel so sorry and sad it's happened, it's so cruel. All these mums, dads, husbands, wives who have had there lives stolen and turned upside down and inside out because of dementia, its horrible and cruel.
I feel guilty that I can try and escape it and mum can't, I was watching tv yesterday and mum kept popping in my head and I'd feel guilty and worry about her.
I've a pile of ironing waiting for me today, I've got the iron and board out already sat looking at me but I'm yet to start, I'll go crack on and at least do something useful instead of just sitting about upset.
 

Pete1

Registered User
Jul 16, 2019
875
Hi @annielou, everything you are experiencing is perfectly natural - I totally agree with @canary my Mum was so much more content in a care home, it removed the anxiety and fear and when I look back on it my only regret is that I didn't act sooner really. I do think however, it is more difficult for you and others at the moment with the visiting restrictions (although they do say it is best to let the person settle in any event), I'm sure if you were able to visit (hopefully) you would feel happier at seeing Mum settled. I can say over time the guilt and worry to reduce as you and Mum become used to the new situation. I do feel for you - stay strong.
 

Banjomansmate

Registered User
Jan 13, 2019
2,182
Dorset
You can only do the best you can at the time. We all think of the things we could or should have done after the event because we think it might have had a better outcome but easily it could have made no difference or may even have turned out worse!
Dementia is the culprit for sending your Mum into residential care, not you and it would have happened sooner or later. You just have to be thankful that it came about after a “minor“ incident on her first walkabout rather than a major accident. It sounds as though she is accepting events at the moment and even if she wasn’t there is very little you could do to alter things as she needs to be in receipt of 24 hour care.
It is difficult but this is where you have to learn to back off , learn to trust and let the staff take over. You are still her carer but in a different way now. Sadly you have the extra problems of Coronavirus to cope with but in some respects that takes things out of your hands and you can do nothing about them.
 

DianeW

Registered User
Sep 10, 2013
762
Lytham St Annes
I think you need to bash that huge guilt monster hard on his big fat head immediately...........BANG WALLOP......

But seriously though, nothing you could have done could have changed this disease and how it’s affecting your Mum, of course it’s sad and upsetting that it’s turned out like this, but you have to now take comfort in the fact that your Mum is safe and well and you and the family are not so stressed and desperately concerned for her safety.

Sometimes it’s easy to forget just how very hard it was dealing with your Mum each day when your out of it a bit as you are now, and just remember that she was on a downhill decline as your posts over a few weeks show that clearly.

Life is going to feel very different because your Mum was a large focus of your daily life and now she isn’t it’s almost like learning to live a new way.

You gave your all to your Mum, now it’s time to begin your life in a different way.

Take each day as it comes, ring and enjoy the phone calls you can have with your Mum, visit her when your allowed, and I am sure time will make things easier for you, especially as you get to see how your Mum settles when she is out of isolation.
 

canary

Registered User
Feb 25, 2014
13,603
South coast
I agree - there is absolutely nothing you could have done to prevent your mums decline. In fact, I take my hat off to you for being able to keep her at home for as long as you did. Im sure most people (including myself) could not have lasted that long.
 

annielou

Registered User
Sep 27, 2019
1,700
Yorkshire
Thanks @DianeW @canary xx
I feel quite lost at moment and not sure what to do with myself, it all feels very odd and I don't feel like doing much cos keep thinking about mum and feel bad when I do do things cos mum can't do what she wants and I feel a bit like I shouldn't either, a bit like I put her there so I could get on and do things for me. I know really I didn't put her there but I do feel at times like I'm benefiting and feel guilty.
My sister rang the CH this morning to see how mum is and he said Mum is well liked, he liked spending time with her cos she makes him laugh. He might say that to everybody but it made us feel a bit proud of mum and pleased could see her nice side and personality. He said she was settling better, still saying she needs to go home and to look after her children but more easily distracted which made us feel a bit better too. My sister asked if she had got her DVDs and things now and he said he was sure she had everything, the DVDs had been in bag in office and weren't now so he would go check and ask if she wanted one on while he was there. He said it will be nice when she moves room next week and can mix. SS haven't been in touch yet but they'll let us know when they have been and we can ring anytime, better after 10, they appreciate how worried we are and how weird it feels especially at this stage. Which sis and I appreciated.
I got the paperwork from them this lunchtime to sign and send back as mums representative. There is a residency agreement and a form for a personal allowance contract, for optional extras that care costs don't cover. The residency agreement at minute is for short stay with NHS funding, I assume when assessment is finished if/when they say mum needs permanent care they'll amend or re do it. I've had read through and sent it my sister to look at too and all looks fine and happy to sign.
It has given us couple of questions though which I wondered if anyone on forum who is LA funded knows about. My mum will be LA funded and at moment her pension/benefits are paid directly into her bank account, we know when/if she is in CH permanently that most of her benefits will go to pay for her care and she will only get a small personal allowance but we wondered how that's done. Will it still be paid into her bank account, or will the CH be given the personal allowance and in turn give it to mum?
At the moment my sister and I don't have LPA for mum, we're thinking we'll apply for deputyship once needs assessment for mum is done if it says mum hasn't got capacity, but at moment we don't have anything legal in place to access her finances, in the past mum gave me and my husband verbal permission to draw out money for her and pay her bills etc and I'm appointee for her benefits with DWP, but if her personal allowance is paid into her bank account we won't really be allowed to access it until we apply and if we get deputyship.
Also there is a form for a personal allowance contract they sent for optional extras the care costs don't cover which it says most residents find it convenient for the home to pay for them on their behalf out of their individual cash float held by the home to avoid them holding too much cash themselves/in their rooms. We can choose which things on list we want to include if we want to do that. If we do they ask for an initial deposit and then give a receipt and after that keep a record of money going in and out which can ask for at any time. The options are hairdressers, private chiropody, confectionery, toiletries, newspapers, outings, tobacco, visiting retailers, clothing, entertainment and anything else which I ask for.
I wondered if this would be a good idea so mum and them doesn't have to worry about her remembering to pay right amount when she uses those services or if it was better for her to pay herself?
Also I wondered if that means that each weeks personal allowance will go straight into her float automatic rather than physically going to mum at all?
 

canary

Registered User
Feb 25, 2014
13,603
South coast
I dont know about how paying the pension and benefits works in practise, but I do know about this bit
there is a form for a personal allowance contract they sent for optional extras the care costs don't cover which it says most residents find it convenient for the home to pay for them on their behalf out of their individual cash float held by the home to avoid them holding too much cash themselves/in their rooms.
Mums care home used exactly the same system for all its residents, whether LA or privately funded. I dint want mum to hold any cash at all because she would lose/hide it, so we used the float. Mum had the hairdresser and podiatrist regularly and also for outings (I dont think they are happening at the moment) and entertainment that required extra - eg they did a barbecue in the summer and asked for an extra £5 to cover it. I used to buy and take in sweets, toiletries and clothes for mum when needed and the rest wasnt appropriate.
Because mum was privately funded I just used to top up the float from mums account, but Im sure that if you asked them, the care home will be able to tell you how it works for LA funded.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,836
Nottinghamshire
My dad was LA funded for the twelve week property disregard and if he needed his nails cutting or whatever the manager would get a receipt and I’d pay the bill from dad’s money. I never left cash with him either. He’d have given it all to the nearest small child 🙄
 

annielou

Registered User
Sep 27, 2019
1,700
Yorkshire
Thanks @canary @Bunpoots xx
Mum mostly managed paying for things before lockdown but I always kept an eye on her and occassionaly I needed to help her find correct amount and sometimes she would ask us to fetch something for her and forget to pay, or would try to pay us again forgetting she'd already paid, that's ok with us but with others isn't so good. Since lockdown we've done all her shopping and drawn out her money for her and sorted amounts out so I don't know how good or bad she is really now.
I think we'd rather mum didn't have to keep track of her money in the CH, though she might find it odd if wants to pay for things and doesn't need to, we think the home keeping a track on it for her would be a good idea. I'd be happy to take in toiletries and sweets regularly and if mum needs clothes my sister and I would prefer to order/shop for them on mums behalf or take her for them if/when can go out. Things like hair and nails and outings and entertainment and if people come to home selling things mum might like (when allowed) then that would be a good for home to hold a float to take it out of for her.