I should have listened to BB. Now I really need advice!

New to Carers Connect
1

I came over from Canada when my Mum’s Partner (the love of her life) was dying of Cancer, she has dementia. I initially posted a question about POA but now the situation has changed dramatically. I had intended to split my time between Canada and the UK, my husband and kids (18 and 20) are there taking Mum with me but that is not possible.

Mum’s partner died in July and Mum (85) and I moved into his family’s house, which is in the process of being sold (we are in Lancashire). I had planned to move her to the South where my friends are but once I saw how much her dementia had progressed, I knew that it was the wrong move. Unfortunately, the more I’m with her, the more clingy she gets. In the circumstances its understandable but she does have tantrums if I want to go out without her, even if its just for an hour.

I thought about reclaiming her house, (which is rented and about 2 hours from where we are) and setting up services for her at that house. However, she has not lived there for two years and when we drove past the house she did not even recognise it (I’ve realised that she is very good at pretending she knows something so I didn’t tell her where we were to see her reaction).

Back to the drawing board. I finally got her to agree to going to look (again) at a lovely retirement home nearby, that has a dementia section, knowing that we would have to self-fund. Once the house is sold, she probably has sufficient for about 6 years at that particular home.

Anyway, yesterday she fell down the stairs at the house and broke her foot and that now means that the retirement home will probably not be suitable - actually it probably wasn’t going to be anyway. The house we are currently in is being sold to a neighbour and although he has said that we could stay for a little while after the sale goes through, realistically we only have until the end of September or October.

I’m looking for advice of what to do, should I get hold of Social Services, Social Worker, Alzheimers Society? What sort of help can they give me? Will they know where there are spaces for care or do I have to do all the legwork myself? What happens when the money runs out? Will the fact that she will be homeless make them help us?

I think I have aged at least 10 years since I came here. I miss my husband and kids and feel I’m on an emotional roller-coaster.

BB, you told me not to do anything until I’d researched everything. You were right but unfortunately time was not on my side.

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Hi Canbrit.

Time for a sit down with the experts out there … AGE UK.

They will guide you through the various options available under current English law.
https://www.ageuk.org.uk/

Added advantage of an online assistant should you be stuck at any point.

Suffice to say , there is NO other place to gain as much information / advice / guidance across the whole spectrum when it comes
to the needs of our senior citizens … with plenty on there for family / kinship carers as well.

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Don’t worry, my advice isn’t compulsory, but the result of some tough things that changed my life forever.

Now I’m going to give you an idea which seems dreadful, but is the only way I can see of you getting back to your family before mum dies.
Yes, I know it’s horrible, but isn’t that the reality.
I’m also assuming that you are not too bothered about receiving an inheritance?

You now know that mum’s dementia is really severe, and that she lacks mental capacity.
As the sale of where she currently lives is going through, then make sure it’s all finalised asap.
This means that effectively mum is “homeless” and cannot return to the house she actasully owns as it is rented out.
As such, she becomes the responsibility of the local Social Services Department. They can then put a “charge” on the other house. If the value of the house is less than the value of the care mum gets, then it’s then up to Social Services to fund the care.

Think about going back home to see your family asap.

Mum does not need a “care” home but an EMI home, for the Elderly Mentally Infirm. Find the best one you like for mum, talk to the Matron, and ask her to visit mum in hospital.

I’m always on the side of the carer, having been on the receiving end of bullying and blackmail from hospitals. All they are interested in is “getting our bed back” and regarding anyone who cannot be cured as a “bed blocker”. So much for the idea of “Cradle to the Grave” the NHS wa supposed to have!

Please talk to a solicitor about how mum’s besti interests can be protected once you have gone home.

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Thanks Chris, I called Age Concern and I need to talk to their Level 2 Advisors (not available until after the Bank Holiday).

BB, they would not keep Mum in hospital. They said that it would make her dementia even worse so we’re at the house and as she does not feel pain in the foot she does not want to wear the boot so I’m forcing her to rest. Its very difficult as she has always been so active and she can’t accept that she shouldn’t be walking around. Every time I leave the room, she gets up without the boot (she’s already thrown that out of reach and after putting it back over 10 times I’m exhausted and given up).

I spoke to the new Owner of the house and contracts have been exchanged so its not long until we need to move (he is fine with us staying but I’m not going to tell SS that). I hadn’t heard of EMI homes, I will look what is available in the area.

What words should I be using when I’m talking to SS to get them to react quickly? Should I tell them that I’m leaving on a particular date (my tickets are flexible but again they don’t need to know that). I called about 4 weeks about a Care Assessment and I still haven’t heard from them so I don’t have a lot of confidence.

No, receiving an inheritance is not on my list of wants. Finding a good place for her and being able to be with my family. Mum can talk a good game and does not come across as being so far along her dementia journey (until you spend more time with her). There is a really nice retirement home with a dementia unit attached, I’m tempted to get respite care for her there for the next few weeks and then say that she can’t come home because there is nowhere to go home to and I won’t be there. Does that seem a reasonable strategy?

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Yes, absolutely a great plan.
Did they just give her a boot and send her home? Without a care package???

I’m sure all this is an emotional roller coaster, you are going to have to be very tough, and incredibly assertive to get Social Services involved. Have you had a deposit for the house now? If so, and mum is now classed as “self funding” mum can go wherever you want, as long as she agrees to it.

however, you need to be prepared for a battle of wills, and ultimately leaving mum with no care to go back home to your family, in order for her to get the care she needs. Alternatively, employing a private carer for a while.

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No care package, I explained the situation and although the nurse was sympathic she said there was nothing they could do at a Bank Holiday - no Social Worker available or anything.

The house that is being sold is not my Mum’s home but the house that we are currently living in so it means that she is homeless within a few weeks. Her own house is rented and although her tenant wants to buy I’m unsure that she can afford to. In terms of money in the bank, she probably has enough to pay for the retirement home for a few months before the house would need to be sold. I assume that I should not offer to pay anything otherwise I would be expected to pay for more than I’m willing to?

I’m going to have to dig into my reserves of strength to do this. This has been a really emotional time thinking that we were going in one direction and then having to do a 180. Mum’s grief is so great, not helped by the uncertainty for her future. She has gone from being a really positive person to saying that she just wants to die - so sad.

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Call Socail Service emergency out of hours line.explain Mum needs help while She isin her own home, now and with the boot and the dementia. Use the words “unsafe discharge” over and over again.Tell them you are going back to Canada on a date about a week away (even if it’s fib)

That’s short term

Meanwhile start finding Home for her near your supports. Don’t worry about her running out of money. If she does that’s where SS should step in again, but thats a long way off and you’ll have have been through many hurdles before then. She needs to be where someone you know can pop in occasionally

If she damages herself not wearing the boot while in care of SS/NH then it adds fuel to your complaint about unsafe discharge and will get her more help (but do note she will probably refuse or ignore all help any way)

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Hello
My late husband had vascular dementia along with other health issues. Possibly the dementia declined a little more when he was hospitalised several times. (He was in a nursing home). However it was going to decline, and my family and myself felt he was safer in hospital when having health issues. The hospital wouldn’t even discharge him back to the home if they felt it wasn’t a safe one. In my humble opinion the hospital have been very unfair to you and your mother. All hospitals should be dementia friendly. Am so sad this is happening to you, and obviously you need your husband and children, as much as they need you.

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If the hospital couldn’t discharge mum SAFELY because of a bank holiday, then she should NOT have been discharged. They are supposed to go through a proper process. I would complain to the Chief Executive, specifically use the words UNSAFE DISCHARGE.

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Thanks for all the replies. I think I’m best not to get to hooked up with the ‘unsafe discharge’ at this time, lthough I agree. As Mum tried to stumble out of the room I stopped her and made her sit down saying it wasn’t right that she couldn’t walk in the boot and they said “she just did, we can’t give her a hospital bed” and made me wheel her out instead.

Anyway, she is without pain and currently resting it up (although it’s really hard to get her not to walk on it). I think I should concentrate on getting her into the place I want her to be and then move out of the house we’re staying in so they have nowhere to try and send her back to. At that stage I can get in touch with SS and get any assessments done. Will the home ask for assessments to be done first or as long as they have the money, they will be happy?

On a personal level, I will need to cope with the sadness and guilt. Her late partner asked me to promise that I wouldn’t put her in a home last year, I refused because I knew I couldn’t promise that. I thought Mum and I would still have some time to travel, spend time in Canada and have quality time together but the last weeks have proved that it’s not possible. I see flashes of my real Mum and I have hope, only to see that tumbling down again, when I ask her for a plate and she gives me a bowl or has a paddy because She doesn’t want a bath/shower or have her hair washed.

I take my hat off to you guys who wear the T-shirt. I’ve read such heartbreaking situations on this forum I’m lucky that Mum has some money that gives her (me) options. I’ve only done this for 6 weeks and it’s such hard work. I want to be her daughter and not her Carer, I want to go back to having the patience to answer that same question a million times without resentment.

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If mum has money (and crucially, she agrees she cannot manage on her own without you) then sadly residential is the only option. Mum said she never ever wanted to go back to hospital, and the home said they could manage to deal with anything other than constant bleeding, until she died. That is the sort of thing you need to be sure of. It is incredibly sad that mum has reached this point, sadly mum’s dementia means that she will never really realise for more than a moment or two what she needs now. Your home is with your family.

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Hi Canbrit

Although I can’t offer you competent advice, I empathize with you. It’s an utterly tragic situation for your mum, and it’s difficult to not be able to ‘fix’ things for a parent when the lose the person they love. With your mum’s illness as well as her grief, it must be very difficult for you both. It was an unreasonable - although understandable - request from her late partner, and you were brave to refuse. One thing that has saddened me with my dad’s decline is the denial of the reality of how bad things are getting, so that rather than being to make planned and rational decisions for the best future, you arrive in the middle of a crisis and have to take emergency action. But I suppose it’s a difficult thing to face and acknowledge…

Have you spoken to the home about their admission procedure? When I was looking it seemed the norm for the home to conduct their own assessment to establish needs prior to admission, rather than expecting to see an assessment from SS.

Don’t feel guilty. Allow yourself to feel frustrated and resentful if you need to. Don’t forget that your mum is incredibly fortunate to have you fighting her corner. Do you have a support network that you can access at the moment? Don’t know if this might be useful reading on elderly parents and guilt: Taking Care of Elderly Parents | Psychology Today United Kingdom

Jane

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Well I have found a place for Mum. It’s an assisted living in a beautiful complex but I know that they probably won’t be able to handle her dementia for too long but enough time for me to breathe and deal with getting an assessment for her. The complex has a dementia care unit so eventually I hope she will be able to move in there. Anyway, they did their own health assessment and financial assessment and it was approved. Furniture is coming today and she can move in next week but she has high stress about it so I’ll hang around until she is a little settled. Our days have been a series of ups and downs and having some space with give me strength.

The hospital called and booked her in on Monday and they told me that she would need a cast, this is just not the right time. I have made her rest all week (apart from some necessary trips out) as she refuses to wear the boot. She says it does not hurt, she even asks what’s wrong with it because it feels fine, although I do think it aches after a while. I’m intending to take her on Monday and have the consultation and see if there are other options or what the risks are if she doesn’t have the plaster or do the boot. I think her mental health at this time might be more important than the physical, obviously it would be different if she was in pain. If they can leave it for 10 days I’m sure it can wait a little longer - I did tell them on the phone that she refuses to wear the boot and there was no reaction.

One step at a time, breathe… Hope to get back home for my son’s 21st in two weeks time but will be back in October. Thank goodness my husband has a good job!

Canbrit

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The place you have found sounds lovely, the best possible in the circumstances. No one can ask for more than that!!

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I moved Mum into the assisted living home and put in the supports that she wanted, stayed for a few days and then left for a couple of days. It exposed that she needed far more care and we have now put that in place. The home has residents with a mixture of physical disabilities, elderly and a few dementia patients. Mum has always been lively, friendly and fun but although the staff are wonderful, some of the residents are disgusted that anyone with dementia should be there at all, sigh. She’s starting to be blanked by some because of her repeated questions, meanwhile she can’t understand why she is there. “Look at them, they’re so old and then look at me”. She’s 85 but I’m sure in her mind she is at least 10 years younger. She has been there for nearly 2 weeks and it’s been a hard transition, she keeps asking where else she can go and I tell her if she can find another option then I’ll look at it next time Im in the UK. Yes, I’m finally going home to my family. I’m emotionally burnt and put on 10lb in the last few months and as worried as heck that she’s going to be ok, she keeps telling me that she will be dead by the time I come back but at the same time accepts that I need to be with my family.

Back in a few weeks to try and sort more things out. Appointments with a new Dr, eye tests, dentist, all the things I didn’t get chance to do during this emotional roller coaster. She hasn’t had a memory test for over 2 years and her current Dr couldn’t give us an appointment whilst I was in the UK and wouldn’t book for when I return. I have applied for attendance allowance for her on 23 July and I’ve still not heard and no money has arrived in her account - does that sound too long?