Don't know what to do next!

[Cazb85]

Hi everyone. My dad has been diagnosed with Alzheimer's. I am an only child (30) and mum passed away 7 years ago. I have absolutely no family so am coping on my own.
I live 20 mins away and have a demanding job. I am with him every evening after work until about 9pm and back in the morning before I go to work. I struggle but (with a fight) got carers coming in twice a day for half an hour. The week before Christmas he had a fall and broke his arm. Since then I haven't left him and stayed. I am near breaking point now though.

He has quickly declined since summer. He struggles recognise me at times and refers to 'Caroline' when I am sitting with him! He often asks where the other one is. Or asks where mum is. He thinks he still works and says he is giving it all up about 10 times per day. He then constantly says he is going home (which he thinks is Morecambe where he grew up). Or he says he wants to go to the other place that looks like this. He doesn't sleep and in the night needs to be watched incase he wanders. Worse thing is this week he has started going to the front door and peeing in the front garden! This evening he has peed in the kitchen and swears it isn't him. I just ended up in tears.

My dilemma is what do I do now!

I think I need respite care for dad as I am so tired emotionally and physically. I go back to work on Monday and social services have agreed to an extra half an hour per day but I am petrified it isn't enough. Respite is costly and I don't want dad to go backwards or hate me for putting him in with people who are a lot older than him. He is 75.

I am debating permanent care homes for him too but I feel so guilty in even thinking it and also they are so expensive! I went to see a lovely one which was like a 5* hotel and I would love it for dad but it is 5k+ per month which I can't afford. There is the decision if I do on selling the family home which is going to break my heart. I am completely stuck. Dad has a good pension and owns the house which means I don't think I'm entitled to any help in paying for care homes.

Has anyone been in a similar situation and was respite and also permanent care? I feel I am at a major crossroads and I am so tired I don't want to make the wrong decision!

Sorry for the long message!

Caroline

 

[Beate]

Oh love. You don't have to be able to afford a care home or respite, it will go from your dad's money. Would his pension and any savings cover it? If he were to go into a home, would you be able to rent out his house and hereby cover some or all of the fees? Plus, he is entitled to higher rate Attendance Allowance if he needs help in the night. This is not means-tested and can be retained if self-funding a care home.
https://www.gov.uk/attendance-allowance/overview

I see you have social services involved already, which is great, but have you had a detailed carers assessment that would give you the right to a certain number of respite weeks a year? They should also refer you to an OT and telecare which could provide gadgets around the house like door alarms or trackers.

Also, have you thought about day care or sitting/befriending service? Both have been a lifeline for us, keeping my OH safe and entertained while I use the time for myself. One thing is for sure, you can't go on like this.

Have you had any input from the Alzheimer's Society, Age UK or the Carers Centre? They can help you with any assessments and forms and also act as an advocate, dealing with the authorities for you. Please don't feel guilty, you have to look after yourself.

In the meantime and for some immediate help, read this article on compassionate communication: http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

I'm sure fizzie will be along soon to give you some phone numbers as well.

 

[Sarah4uk]

I can't help you on 'practical' matters, but I'm 34, looking after my grandparents with dementia, and I'm with you, it's damn difficult!!
Support is here.
Is he "self funding"?


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[Sarah4uk]

Oh beate's reply, personally I've had a carers assessment, but my la doesn't seem to mention any allowed restbite weeks..


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[Beate]

Oh beate's reply, personally I've had a carers assessment, but my la doesn't seem to mention any allowed restbite weeks..

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Every borough does things differently but generally speaking, if you don't ask you don't get.

 

[Shedrech]

Hi Cazb85
Welcome to TP - sorry you needed to find the forum but so glad you have as there's lots of information, experience and sympathy here

You and your poor dad can't carry on like this. Beate has wise words for you.
Your dad needs constant supervision, it seems to me - so adding in some more visits to his home isn't really going to give you the break you need, nor the peace of mind to function at work
Please go back to SS/Adult Services on Monday and make it clear that you are in no position to give him the amount of support he needs - say that he is a vulnerable adult and at risk - that you need an immediate respite placement for him - and that you will be looking to find a care home

I truly don't say this lightly - I honestly can't believe that your dad would want you to jeopardise your job and health to take on his care - you are far too young to set aside your life - you need to be his daughter, visit him and supervise his care, while others take on the day to day support he requires

as for finding a care home - yes, the expensive hotel style look wonderful - there will, though, be ones which appear more homely, less flashy, but where the staff are caring, supportive and well trained to look after your dad - check on your LA's website and on the CQC website
http://www.cqc.org.uk/content/care-homes
and visit a few - if your dad is self funding, the choice is up to you

You will, I'm sure, do what is best for you both, whatever you choose that to be - but contact SS straight away to get more help, please.

 

[Quilty]

Hello, im in the same boat. Not an only child but only one involved in mums life. While organusing respite she ended up 999 in hospital and never came home. She is self funding and im getting the houae renovated for a tenant. Unless cists go up considerable we wont need to sell the house.

I picked the care home based on word of mouth and feeling if caring. Its a bit shabby but staff are living and caring. Thats more important than fancy place. Keep posting as you have a great network here. Mum improved massively in care. Shes happier than she has been in years. More confused each week tho. Dementia marches onward. Deep breath and tackle one problem at a time. Respite then care? Your dad will be self funding so you get to decide which feels **** but is better than social services doing it. Do you have power of attorney fir finance and welfare? You will need authority.

 

[mrs mcgonnagal]

Hello, these replies are all good advice, your dad is how my mam became over this last year, its very distressing. Take the advice of the good people on here, because they understand and will give you different points of view and you don't feel quite so alone. I started with respite care 2 or 3 times, and eventually my mam stayed because I was on my own too, and it is hard beyond words. Best wishes to you and I hope you find help as soon as possible.
I would just like to add, the care home I found is not flashy, but small and very well run, the staff are amazing and my mam has improved beyond what I ever would have expected. Confused, but much less distressed. They have had a great time partying over Christmas, and she joins in everything going on. It's hard, but I couldn't give her all that on my own, no one can.

 

[Cazb85]

Thanks everyone. I am pleased that you have thought the same as what I am thinking.

I just can't believe how quick it is all happening to me. I am finding it hard to draw breath!

Dad is on higher rate attendance allowance but yes he will be self funding I think. Saying this our LA I don't think are charging me full rate for his home care. At the care home I visited they have a financial advisor that visits and they said to pick his brain which i might do!

Unfortunately our social services for our borough are rubbish and unless I phone them in tears and at breaking point I don't get anywhere. I want to be able to choose a care home out of borough and say 'yes that's the one' then tell them. Especially as I have visited one here and it was dreadful. My paramedic friend then said she wouldn't advise any in this area!!!! I have a couple more I want to see in Essex and will compare them. The hotel type one I saw was just amazing. i did say 'can I come here and stay with you instead as the respite!!!' Just wish I was wealthy and could afford it. The small ones might be good too but you don't hear about these ones as much.

Thanks for the help. I don't think anyone understands dementia until you are living with someone through it!

 

[Shedrech]

Hi again Cazb85
this is such a helpful site, isn't it - so post anytime you have a concern

Just a thought - I can't see that you've mentioned this - have you Power of Attorney for your dad? Both for Finance and Health & Welfare? These will give you the authority to make choices on your dad's behalf and make sure that your right to be consulted is acknowledged.

you've a busy time ahead of you, but sorting out your dad's care will be worth all the hard work

all the best

 

[theunknown]

Caz, I don't think there's any way you can carry on with what you're coping with without your physical and mental health suffering. As someone else said above, I have no practical advice to offer, but you definitely need to think about yourself and how things are affecting you. It does sound as if your mum would benefit from full-time care, and you don't seem to be in a position where you can do that yourself. It's a horrible position to be in, but you're going to run yourself ragged carrying on as you are. All the best x

 

[Pickles53]

I want to be able to choose a care home out of borough and say 'yes that's the one' then tell them. Especially as I have visited one here and it was dreadful.t!

If your mum will be self-funding you don't need to involve SS at all. Choose the care home you want and just make the arrangements with the home. I had one meeting with SS in my mum's local area early on. As I was informed she didn't meet the threshold for them to organise a care package (this was before the new care act came in) I didn't waste my time contacting them again. I moved my mum after a fall from which she didn't recover very well, using a wheelchair-accessible taxi.

Frankly having read a lot of posts on here since doing it myself was a lot less hassle than others have experienced dealing with SS. I did have a financial EPOA (the predecessor of LPA) but no H&W LPA. Nobody questioned my decision-making at any time.

 

[copsham]

Hello Caz85
It is such a difficult time, making the decision and then actually doing it. But if you manage to find a good home it is such a blessing. It is interesting how your role changes but you very much remain responsible in a positive way. Building up a good relationship with staff and working together is very rewarding. They do the hard slog of the day to day care with you visiting, remaining fully involved in decsion making.

It was the best decision I made. I thought I would be able to struggle on until my mother passed away. She was so fragile it looked like it would be soon. In the event it is three years and she is going stong (physically). She enjoys her hotel like nursing home even if she cant remember where her ensuite bathroom is.

I wish you well in mamaging the whole process.

 

[Witzend]

If your mum will be self-funding you don't need to involve SS at all. Choose the care home you want and just make the arrangements with the home. I had one meeting with SS in my mum's local area early on. As I was informed she didn't meet the threshold for them to organise a care package (this was before the new care act came in) I didn't waste my time contacting them again. I moved my mum after a fall from which she didn't recover very well, using a wheelchair-accessible taxi.

Frankly having read a lot of posts on here since doing it myself was a lot less hassle than others have experienced dealing with SS. I did have a financial EPOA (the predecessor of LPA) but no H&W LPA. Nobody questioned my decision-making at any time.

I agree - we have been through this twice without involving SS at all, except that I think there was a very brief, tick-box 'chat' with my mother, but only after all the arrangements had been made. We found the care homes ourselves - I won't pretend it was quick or simple finding the right ones, but I don't think anybody else could have known better what felt right for either of them.

BTW, I have visited so many care homes over the years, and I would say please don't be over-influenced by five star looks, or very smart decor - it is not necessarily indicative of good care, and on at least one occasion I came away feeling that it was there more to impress the relatives who were choosing, than for the residents. Personally I would opt for cosy and homely, with a good feel and kind, cheerful looking staff, and would visit more than once, at different times of day.

 

[mrs mcgonnagal]

You have been in my mind, and I hope you are managing alright x

 

[DMac]

Caz, I note a few facts from your first post: 1. your age 2. that you have a demanding job 3. your dad's rapid decline over the past few months.

I hope your employers are sympathetic to you? I wonder if you have raised your issues with them - assuming you would feel comfortable doing this? Any good company should be doing its utmost to support employees going through experiences like you are right now. It would be a travesty, for you and for them, to lose you at this stage of your career. I hope they can be supportive towards you, even a counsellor to help you think through your options would be helpful. Good luck. xx

 

[Cazb85]

Thanks everyone.

Luckily I have some fab friends and one of them suggested POA a while back before a diagnosis was even on the cards so that has just gone through for both financial and medical.

I don't know if I mentioned it but I have Crohn's disease and am awaiting an operation to rectify a secondary issue with my hips so this is why I do need to secure good respite as soon as. My consultant is aware of the problem and he has suggested I speak with the IBD counsellor as I am quite emotional about it all.

My boss who I am the PA is aware of the situation and has been good as he can be. He is letting me go to appointments etc. I think I need to take some of my holiday to go look at care places.

So much to do as well as make sure dad is safe and well. Doesn't help that I just had a call to say the evening carer can't come as she has been assaulted and is at the police station. Bless her she is lovely (and the only decent carer they have) so I hope she is ok.

 

[Sarah4uk]

Every borough does things differently but generally speaking, if you don't ask you don't get.

They just keep throwing the "self funding" stick at us...


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[2jays]

They just keep throwing the "self funding" stick at us...


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So you cry. Sob and perhaps, if you can manage it, wail.....

Agree with them that yes self funding but tell them, that doesn't mean it's also self finding. They have a duty of care to help you find the answers you need.

I did all of the above, with my wailing I was hoping for an Oscar...... Didn't get it, but I did get a bit more sympathy.

Sorry. Not read any of this thread, but picked up on your comment about self funding.....

Shall now read this thread and hopefully have some answers if no answers I have plenty of squishy hugs xxxxx


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