Don't know how much more i can take

New diagnosis and before diagnosis
1

I had to come on here to write as i feel like im at breaking point.

I will try to keep this short.

I’m undiagnosed ms, i suppose could say waiting for a 2nd attack for diagnosis (very frightened, scared i won’t have a normal life etc etc).

My mum & dad have been broken up since i was 7, im now 31 (female).

My dad has been diagnosed with altzimers only 68 but before he was diagnosed he was with a lady friend. She has pretty much lived with him before and after this diagnosis (about 3 years) but she does have her own home which she also tries to look after. My dad has got worse & cannot do anything for himself. I see my dad once a week and me and this lady friend cook a dinner and catch up. The situation has been getting harder for her so me and my sister have been trying to arrange for a carer to live with him and the lady friend of his to stay with him 3 times a week and the carer the rest. Anyway the lady friends family want her out of the situation altogether and she is now leaving tomorrrow morning…

Me and my sister are now trying to arrange urgent care to live in his home, going to cost £1600 a week. The care can’t come in until Sunday afternoon and she is leaving tomorrow morning. Me and my sister have to be with my dad when she just vanishes. It is going to be hell, he understands that she is going etc. I’m going to have to get my boyfriend to stay with my dad from 12 noon until 4pm on sunday when this care arrives, i can’t stay with him as this is breaking my heart. My dad is completely mobile and able bodied, he can eat move etc etc, but his mind and memory has gone, he doesnt even know how to make a cup of tea anymore.

On top of this my boyfriend got a call from his dad this morning that his grandad has died and my cat of 18 years old had to be put down yesterday, she had a fit.

I honestly don’t know how much more i can take.

I’m on here to vent, you don’t have to reply, i just need to let it all out.

As well as having this deep sorrow for my dad, i’m actually thinking because of all of this and his lady friend just getting up and leaving that he would be best if he wasn’t here anymore.

And at the same time as all of this i’m thinking is this all going to happen to me.

I’m scared.

2

Hi Anon

There really isn’t much I can say to help you but just wanted to let you know that you are welcome to rant. Someone out here has listened and really feels for you. Just remember though that stress could well bring on another attack so make sure you look after yourself too and get enough rest.

Hope things improve for you.

Min

3

I am sorry that you are having such a horrible time. It sounds as if you and your sister are doing exactly what you need to - getting live-in care installed and working as soon as possible - so you get things in a stable orbit for a bit and have time and thinking space to think through longer term issues. So well done, and I hope that you all manage to get through this difficult weekend and establish some sort of safe-feeling normality for your father and slightly calmer waters for you. Hang on in there - it won’t always be as bloody awful as this.

Alison

x

4

Why are you having to pay so much for his care? Have you contacted Social Services and is your dad getting all the benefits he’s entitled to? The chance of someone with MS needing 24/7 care is tiny. The chance of someone with MS having equivalent cognitive problems to your dad is tiny. Don’t let fear of something that almost certainly won’t happen stop you from enjoying what you have. Times are tough right now - you have a lot to deal with - there is NO reason that things won’t get better. Karen x

5

Hi, I just want to to let you know that I am reading your post and thinking of you too.

You are in a very tricky situation.

I reckon your dad`s lady friend couldnt have thought much about him, if her family talked her in to leaving him so easily. he is better off without her.

You and your sister are lovely to care for your dad so much.

With so much sadness going on around you, you are bound to feel worried.

keep venting here and we will do our best to support you.

bless you.

luv Pollx

6

Hi Anon,

What an awful situation you are in, I feel very deeply for you. Your dad’s lady friend dosen’t sound like a friend at all so he’s better off without her. He has two caring daughters and that means a heck of a lot. I am sorry to hear of your boyfriends grandad and the loss of your cat. But taking that all into consideration you must also think of yourself and lead your life. Karen has also brought up the subject of the cost of care, surely Social Services can provide it a heck of a lot cheaper, it may be worth giving them a call.

As Poll has said vent on here anytime you feel the need, we will do our best to support you. Take care of yourself.

Janet

x

7

Thank you for all your support, it makes it easier having such kind words. The care is through social services but because he has over a certain amount of money he has to pay for it himself & also because this has had to be arranged urgently that’s why it’s costing £1600 for the first week. After that its £900 a week. Me & my sister are going to have to look at other care providers. We meet the carer at 4pm tomorrow then his lady friend is gone. She was telling me today that it had got to the point where she was going to leave anyway probably at the end of June to give me & my sister enough time to arranges care but because of a massive argument my sister had with her a few days ago that tipped her over the edge. I really like my dads lady friend but my sister hasn’t, she’s always been jealous of my dads women he’s had in his life since him & my mum broke up. This is bearing in mind my sister is 10 years older than me but acts like a child. I’m really annoyed now because his lady friend old me she would have stayed until the end of June but because of my sister she’s not, so now I’m holding this against my sister it of course I’m not going to tell her this because she will explode. It was so sad today because my dad hasn’t got a clue she’s going tomorrow & he was out in his garden with my boyfriend blowing kisses through the window at me & his friend. My dad has always kept his money a secret from me & my sister & has been very tight with it. Now me & her are having to take his bank card without him knowing and hi jacking his account for hundreds & thousands I feel so lousy. My poor dad didn’t own his own business work his socks off to be spent like this, it’s so cruel.

8

It is probably high on your to-do list already, but just in case it isn’t: you and your sister do need urgently to get the finances on a formal footing, i.e. with you having Power of Attorney over your Dad’s affairs.

I do think you need to take legal advice soon on this, not least to protect yourself and your sister - you are both potentially in a very vulnerable position if you are using your Dad’s money without formal authority to do so, even though you are doing it in his interests and because you simply have to. Seriously, these things can turn into a horrible mess, and you don’t want that. Bear in mind that what you are doing is technically fraudulent, as far as the bank is concerned, regardless of the circumstances, and that is not a good place for you and your sister to be. That is why you need to set things straight legally.

These things are far easier to do while the person granting Power of Attorney still has mental capacity to do this and, if your Dad does not, the matter is both more complicated and more urgent. I know there are a million things for you to do at the moment, but please make this a priority. His social worker should know all about this kind of problem, so it might well be worth a chat with him/her, both for advice and to have it on the record that you are takign steps to get the money on a formal footing, but what you need most is a solicitor. In the meantime, do make sure from day 1 that you and your sister keep a joint and complete record of every penny of his money that you spend, and keep all receipts.

I am so sorry that you have all this to deal with. I am keeping my fingers crossed for you that things settle down soon. It sounds like you are doing a fantastic job keeping everything afloat , and with less help than you might have hoped for!

Alison

x

9

Hi Anon

You’ve got such a lot on your plate right now, no wonder you felt the need to vent. Sometimes life does seem very unfair and it hands us more than we think we can cope with.

I hope once the carers are in place, things will become a little bit easier with your dad’s situation. At least you will know he is being looked after 24/7, it’s such a shame that he has to pay so much for this but he will be blissfully unaware of this.

Alzheimer’s is a very cruel disease and I can understand your distress at watching your dad go through this but as Karen said there is nothing to say that you will go through the same thing. You are not diagnosed at present and you may well not even have MS but if you are diagnosed in the future you are very unlikely to have the same problems as your dad. Many of us with MS still work (many full-time), enjoy an active social life, hobbies, etc etc.

Please look after yourself through this difficult period and keep coming on here to rant when you need to, we all need an outlet when life deals out cr@p.

Tracey x

10

My sisters going to get an appointment with his bank manager, I think you can get some sort of legal right. Power of attorney was discussed a long time ago but he was having none of it. His lady friend was advising him about making a will but he would have none of that either. Ive started to make a list of money we’ve taken out so far.

11

Hello, I am sorry for what you are going through. I just wanted to say that my mother in law has Alzheimer’s and my husband has just completed becoming a Deputy for his mothers affairs. Power of attorney can only be obtained when the person is of sound mind and it wasn’t discussed with her before the disease took over. I found out about the Deputy from the Court of Protection. My husband can now handle all her finances on her behalf. I hope this is helpful as I know just how hard this all is. Sam x

12

Hi there! My heart really does go out to you! Such a lot to take in all at the same time. Hopefully, fingers crossed, if you are undiagnosed, then a second episode may not happen and hopefully it will turn out to be something less life changing as MS. Please take some consolation in the fact that it was probably a difficult decision for your dads friend to walk away. I am sure she cared deeply, but, unlike you, she did not have a lifetime tie, like yourself, and as you can see they do become a very different and even difficult person to be around. It is better for her to walk away, than to end up staying and hating him. He is very lucky to have such wonderful daughters! I agree with Karen that your first port of call should be the social services dept. I know that when an individual has a considerable sum of money, and care costs, has to be taken out of the savings first. It does seem so unfair, however, when and if his funds do run out, the state will have to take over such costs, although by this time he may need around the clock care in a place which is more conducive to his needs 24/7. You are doing all you can by loving and caring for him, but unfortunately, you are going through a grieving process too. Losing the personality, rather than the person. People do not always know how to handle it because there is no physical loss as such, but it is still a huge loss to you both. That and having to face another loss of a friendship that has been nurtured over a period of time with your dads friend. I suggest you get yourself down to the GP first thing tomorrow, explain your situation and try and get some counseling put in place for you to be able to offload, rant, vent, cry, whatever you need to do. It’s hard to be supportive, when you are in need of support too. There are people out there to help you, please use them to get through this difficult time in your life. Lots of hugs