A New Carer!

[Catherine_15042]

Hi! I am not yet a carer but may be about to be one very soon. I wonder if anyone can offer me their opinion or advice please?

My father is not blind but has poor vision. He is also quite deaf and trips over easily. He also has COPD so can't walk too far without being breathless. He has been managed ok with my Mum as she has helped him and looked out for him until recently.
Sadly she had a fall and ended up for 4 weeks in a hospital 2 months ago and is now in a hospice and is not expected to come home again.

My Father came to stay with me for the first 2 weeks and we thought that was going to be the 'crisis' time with Mum and then it would all get sorted out and eventually they would both be back at home but with some support in place.

My father didn't get on too well living in my home as he found the stairs difficult to climb and I don't have a downstairs toilet. So he has now been living with my sister.
Unfortunately she doesn't have a big house but her and her husband and daughter have managed until now.
The problem coming up is that my nephew will soon return from University for the Summer holidays and he will want his room back that my Dad currently occupies. Dad is also a lot of work for my sister as she works full time. Myself and my daughter have helped when we can but I don't have a car and I am also a widow and live on my own so I not have immediate back up support.

We have talked to Dad and he says that he should go back to his own home and we get to him as often as we can but his home is not near by. It's in the same town but right across the city from where myself and my sister live. I am trying to find sheltered accommodation for him but that's taking some time.

I am worried about him being back home on his own and I know that I cannot be there every day. He has expressed concern at being in his own at night!

I am about to talk to his GP and trying to get a social worker but other than that, I am at my wits end knowing what's the best to do!

I have already been a carer as I nursed my husband at home before he died from cancer a few years ago so I am also very anxious about taking on a carers role again. I live alone and don't have a car so worry about being isolated and stuck in an emergency.

I would be really grateful for any help or advice anyone could offer to me!
Thanks.

[caravanj]

Hello Catherine & welcome to the forum,

A difficult situation but please ensure, from the outset & with no get-out clauses, that your sister shares the caring responsibilites with you from day one.

There far too many examples on this forum of carers with siblings who don't give any practical help but are only too willing to stick their noses in when it comes to their Mum or Dad's finances.

[bowlingbun]

Hi Catherine,
What is dad's home like? Does he own it, or is it rented. Privately, or council? There are a range of options to consider, but they depend on answers to the above.

[MumWhoCares]

Hi Catherine,

I've no practical advice for you (others on here will have a much better idea of what you can and can't get help with ) but wanted to say welcome and I hope things get sorted out for you relatively quickly.

[Catherine_15042]

Thank you MumWhoCares, bowlingbun and caravanj!
Thank you for the welcome.
My Dad lives in a council house and has done so for 30 years. I'm trying to get hold of a SW to see what he would be entitled to but proving difficult at the moment. I also have a telephone consultation with Dad's GP.
Communication with my sister has broken down! She has had my Dad stay at her house over the last few weeks but I have a huge chunk if taking him back and forth to see Mum by taxi. I am also chasing up his house move and his social care and his health appointments. She has now said that from week after next, myself and my daughter have got to sort things out as she's had enough. I understand this but Dad has 2 daughters and we both have to so the best we can. My sister also has a husband and a car which is more support than I have. My daughter helps when she can but she has a husband who works away in the week and two young children and a school run to manage. I am also under investigation for skin cancer so quite stressed for my own health. I was broken into the week before last and have had to deal with the upset of that as well. I ended up in hospital for a day and a night because my blood pressure went through the roof!
I know I'm moaning but I worry for my Dad and can't take his care on completely on my own. Something will turn up I'm sure but it's very difficult at the moment.
Thanks for listening to me!

[bowlingbun]

Under the circumstances, the best thing for dad would be to either move to a smaller council property, ideally sheltered, or to move into residential care. He is not your responsibility, or your sister's. He is responsible for himself, and if he can't manage, then it is up to Social Services to sort things out. YOU CANNOT BE FORCED TO CARE. It is sad but true, Social Services tell relatives that they have to care, that nothing else is available etc., but when push comes to shove, there will be something. Even temporary residence in a care home while they sort out a proper package of care for dad in his home. You and your sister must be united in saying to Social Services that you cannot care for dad. You must both write to them, send it Special Delivery. Usually, I'd say send a copy to your local councillor, but it's election time so this might not work as well as usual. As you have recently been in hospital, do you have any evidence you could enclose with your letter? I've been through a similar situation, and it's very difficult, but your own health must come first.

[Catherine_15042]

Thank you bowlingbun!
I am trying to get him into council sheltered accommodation but I suppose these things don't happen overnight !
I thought about writing to the local councillor but as you say their minds will be on electioneering now!
I will have had notes written up while I was in hospital and my GP could help with that as well I suppose.
My youngest daughter said to me that even though we feel very sad for Dad, we can help him best we can but he must decide his own circumstances as well. So from what you say as well, she was right in her thinking.
I think my sister is using emotional blackmail about saying Dad has to go home with or without a care package in place, to force me to pick up all the pieces.
I can't and I won't but we will do the best we can!
Thank you for your support and advice. It's a lonely task trying to help elderly parents!

[bowlingbun]

Social Services will be able to put more pressure on housing than you on your own. I've assumed that they've already done a "needs assessment" and a "Carers Assessment" for you and your sister? If they haven't, stress it's URGENT, vital that it's done this week. COPD is a gradual downward slope as a rule, so it might be worth considering whether it's better for him to move from his own home, to sheltered housing, to a care home, or whether it's better in the long run to move to a home. Obviously, it's his decision, not yours, however many of us here have found that as our parents get older, a certain amount of role reversal takes place, and we end up "parenting" our own parents! Tell your sister what we have said here, that she can't be forced to care, but neither can you. You need to stand firm, together.

[Catherine_15042]

Thanks bowlingbun,
A needs assessment has been done for Dad but not for either myself or my sister. I'll get on to it this week.
It really has been good getting this advice and support.
It might make my sister feel less stressed as well.
Thank you !

[jenny lucas]

Hi - it seems clear that neither you nor your sister can cope with having your dad with you to look after him full time, whether that is by splitting him timewise between the two of you, or one of you taking on all the caring.

As others are saying, it seems the time has come for him to be in a care home, or sheltered accommodation suitable to his needs (and yes, his future needs....) (with deteriorating vision and health, only 'one move' may be the kindest, ie, even if he doesn't need full Care Home care quite yet, at some point he will). Please do remember though, that just because he lives in a Care Home (or similar), doesn't mean he can never come to stay with you and your sister! My MIl in a care home came regularly to me once a week, sometimes twice, for a 'sleepover', and that worked pretty well. Because I didn't have to look after her the rest of the week, when she did come over I was very focussed on her, and went into what I call my 'cossetting mode' - which of course I could only do BECAUSE I didn't have to do it all the time! You may find similar with your dad, that once you don't have the day to day 'grinding' care, your time with him is much more enjoyable and stress free, and you can make the most of family time with him, and him with his daughters and grand-children.

Just a thought finally - given his deteriorating vision, would getting in touch with the RNIB for advice and possibly support, be a good idea? They would know what he can/can't do, and what kind of living arrangements would suit him best.

KR, Jenny