Care Advice - I am at rock bottom

[FlatOutAgain]

Hi,

I am on holiday this week with my DH (in the UK). We left on Friday but popped around to Mum's before we left. She was in a state and Dad said it was because we were going on holiday.

A bit of background. They are both in their 80s my mum is currently being assessed for Dementia (waiting for the scan after being at the memory clinic) and Dad has lots of physical issues as well as his own cognitive decline. Mum is obsessed with her health. She has absolutely no physical health issues at all and at the memory clinic they put her on sertraline to help calm her down. She has a history of calling out ambulances and health care professionals only to be told she is fine. Just had a phone call from my sister who lives 2 hrs from Mum and Dad which is why I end up being the main carer as I live 15 mins away. Mum has called out 4 to 5 health care people including the GP and two ambulances. There is nothing at all wrong with her. It seems that me being on holiday has sent into a crash as I am not there. I feel like giving up and crying given that I can't even take a holiday.

My sister said she will go to see them tomorrow (she has not been down for 6 months) and we will go home on Saturday.

I can't go on like this as it is relentless and my Dad does not have the ability to cope at all. Mum was taken to hospital and Dad did not want her to stay there so now on return to home she has gone to bed and refuses to get up.

Could anyone please advise me on home care and if what services can be provided for mum. I don't really mean a cleaner/washer/cook etc. but is there a service that turns up and chats about health and reassures her she is fine. She craves this every single day. She has to be told she is ok and this means she calms down until the next day when it all starts up again.

I honestly would be grateful for any crumb of comfort that there is some help of some kind out there.

Thank you (yes I am now in tears).

A diagnosis will make a huge difference to the services that you can access so dementia cafes, support groups etc. Age UK will be able to provide info and support but also Google local smaller charities in your area as they might be able to give you support including check in and chats etc. Maintain that you cannot provide the level of care you currently are and look for more sustainable support.

I am so grateful for all of your very kind replies. There is so much great information and I I can't express what it means.

Woke at 3am and got another hour around 5am. I was disappointed that my sister told me. She made the right noises last week in that she would make sure she called them each day and not to worry etc. None of this happened but its now time to move on and put that to bed. I do have a brother but he is blissfully unaware and lives abroad. I accept that I have to be the one to step up and I am ok with this as they are my mum and dad. Its not guilt its love.

I just hit the bottom as its the first holiday we have had in ages and its nothing special just walking and cycling in a beautiful part of the country 300 miles away from where we live.

In response whilst my Dh does breakfast

A carer one hour a day seems sensible and a good start. Mum doesn't like to have 'strangers' in the house so it will be tricky at first but I will be around to help with the transition. I think it will help dad as well as he likes a clean house but can't manage it. I clean as needed but it is not enough to keep on top of everything. Mum doesn't clean at all

No is a complete sentence is brilliant. I am a 'soft touch', always have been so I will get my Dh to do that one. He isn't a pushover

It might not be dementia you are right. The scan will tell when she has one but that could be a short-while. There is an older scan from a few years back from something else to compare it to. I also think you are correct in that she is seeking attention and as another poster said she has control and power by getting everyone around her. We have spoken about this but not sure what we can do.

She is on 0.25mg of sertraline and after complaining of stomach problems the GP during the visit changed it to every other day. Dad administers it as she is not capable

The diagnosis will help I think I was being a bit negative last night.

The hour for dad is something we might have missed but yes its something I will do next week

Quite funny you should say the Yorkshire dales :) Its gorgeous in the sunshine

Boundaries. I could not agree more and I need to get them in place if I am able. You are also correct that if she called the ambulance 46 times a day its not my issue. I have made it my problem and need to step back. That is such good advice. Both mum and dad know that I am at the end of the phone and its an easy option for them. I will call the LA for an assessment. I did look online and thought there was nothing they could do. I can imagine her with a pendant knowing full well the batteries would not make it through the first day

We are not young unfortunately. Its complicated further as our daughter has a life limiting illness and seeing someone who is ill does upset me with mum constantly saying she is ill.

I will be firm with the LA thank you that is a message that is coming through in the replies.

I hope I replied to the points and will be driving home later. We have to put sis and her Dh up whilst they are visiting so need to get the bedroom, bathroom etc. sorted and also some shopping and so on. I am quite looking forward to work on Tuesday as it takes my mind of everything.

Thank you

You need to be adamant with SS that you can not and will not help anymore. If they think you will do it you won't get the help you need.

"Mum doesn't like strangers in the house" - well you don't like not being able to have a holiday. I've been where you are and I know you won't believe this but here it is:

Your parent's wishes are not more important than yours.

Dad wants mum home, mum wants .. whatever it is. You are allowed to want stuff too, you don't have to sacrifice your own needs to make others happy. The phrase I repeated to myself was "don't set yourself on fire to keep others warm". Depending on how you were raised as a child this might be an alien concept. You might have been told that it was the polite thing to do to put others first, to consider everyone else's needs before your own. The issue with this is that if you don't have limits then you can run yourself into the ground attempting the impossible. There will be a time when your parents need more support than you can give and that time might be now.

Come over to the Cockroach cafe (this board, that title) which got me through those difficult years where cloning seemed to be the only answer.

Thank you again for all of your replies. I just have chance to give an update.

Mum was seen by another Dr. at home on Friday as we travelled. He took some blood and had an immediate analysis as Mum was not responding very well and was hallucinating. He then called to say her potasium and sodium levels were dangerously low and he had organised an ambulance.

They took her into the hospital and after an ICU review and a long talk to my sister about a DNR order they put her onto the High Dependency Unit. She could not communicate lucidly and was unable to walk. Everything from thinking she was going to New York, someone is trying to steal her money or take her house etc. She had no idea who people were or what was going on. The consultant said it could be the ADs even though she had only been on 25mg for a few days.

As of yesterday the levels are now returning although she had a blood pressure crash so they are going to continue to keep her in. She is more lucid now although she thinks she is now at the beach.

Sis and her Dh have been staying with Dad who cannot cope on his own.

I will call the local authority today to see what can be done for an assessment although they do have more than the £23k.

Had a good chat with my sis last night and we have put online grocery delivery in place, and have found a local carer although for that we want to take advice from the local authority.

I have no idea what will happen when she comes home as she will not be able to manage and dad is not capable either.

I have to work and dont want to put DH (retired) in the frame for doing everything as he does a lot already. Sis goes home this evening as she to has to work.

Thank you

Sorry should also have said that due to mum's illnesses over the last few years where there has been nothing wrong with her then dad and my sis and also me thought she was once again 'swinging the lead' when in actual fact she wasn't. I have honestly been saying for the last couple of years that if she ever truly became ill we would not believe her. I feel awful but not sure what I could have done as I was on holiday. Sis asked dad why he did not call earlier but he said he did not want to bother me as I was on holiday and he thought mum was just playing up as usual as she had been talking for days about how she was going to manage now we were on holiday.

Perhaps this crisis with your Mum will be helpful in the long run. It sounds like she needs treatment and your Dad shouldn't rush to get her discharged.
There will be a hospital social worker as part of her discharge assessment - I would ask about this and press for it. Make it clear that whilst you are nearby and help out, you are working and not providing care. Don't offer your DH at all.
Helping our families stay safe and cared for is the best thing and being an advocate for that is valuable and powerful - but doesn't mean you have to do it yourself.

The advice on here is always to make it very clear before discharge that there will need to be extra support in place as your father is frail you are working etc

And make it clear to your dad too!

The LA will only put care in if your Mum agrees to it. At this stage I am not sure she will, by the sound of things.

And their input is confined to practical things, like help to get dressed/washed etc.

Families are facing this dilemma all the time and there is no easy solution. I think your best bet is voluntary befriending services, but seriously, nothing is going to stop her doing this unless the GP can find some way of controlling her health anxiety.

I am sorry you find yourself in this situation. Your sister was absolutely out of order to call you when you are on holiday - what purpose does that serve except to ruin your holiday?

It is interesting that she now has had some proper medical input - a lot of this will explain her mental state and hopefully some improvements can be achieved for her.

I have experience of all this as OH was completely nuts for several years before he died.

Do not agree to Mum being discharged until you are sure all possible avenues for help have been pursued. Once she is home they will all wash their hands of her.

My father was put on Mirtazipine when he developed severe anxiety during an illness. It helped him feel calmer and to sleep. He's now much better so it was temporary illness but still takes a lower dose.
There must be a better anxiety med for your mum if sertraline hasn't worked. This will hopefully calm her.
You've had alot of good advice on this thread so won't repeat but you do need to say to yr sis that while you're doing so much day to day - when you do get a break you really need not to be contacted.

A HUGE MASSIVE THANK YOU - today you made a difference to someone!

I went to the hospital to see mum and I chatted to the nurse who said mum would be discharged on Wednesday. She is nowhere near the person who went in as physically she can't stand let alone walk. She has retreated into herself even more. So armed with you wonderful advice I asked about the care package. The nurse said that mum wasn't listed as needing one but he would put it onto her notes so the hospital social services could see it.

Quite soon after I got a visit whilst I was with mum from the lady who manages the care packages. She said mum was not on her list. I explained everything and once again with your advice ringing in my ears I said no to everything. She was very nice and explain what they could do and how it would happen. She said that as mum was in hospital she would jump to the front of the queue and had we left then it would be much more difficult to put a package in place.

She did say that mum would need to be in hospital longer but in all honesty she needs to be and sending her home would only result in death or being back in hospital very quickly.

Your advice made a real difference and if I could buy you all a nice glass of wine then I gladly would.

Thank you so very much

That's fantastic news, excellent update.
Hope your Mum is feeling better soon and glad to have helped in any way.

Excellent news.!

Glad you're getting somewhere but as others have said a holiday is so important - I've just had a week off for my oldies apart from one crisis which makes a huge difference. But I also think your siblings are being selfish here. They could do much more of the remote stuff and take the pressure off you and may I gently suggest you raise that? My sibling and I work as a team and its enormously helpful.