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Having an emotional breakdown

Posted: Fri Oct 06, 2017 10:56 pm
by Dawn_17101
Hi, I am a new carer for my 80 year old Father, sadly having suffered lung cancer last year and having one third of his lung removed the cancer has returned and attached itself to his lower spine and we were told recently it is terminal.
I had a job as a teacher in Indonesia and I dashed back as at first everybody thought the worse and didn't think he was going to live long. However 6 weeks down the line and I've just took on the role to be Dads carer. I have very little breaks in this demanding job and feel guilty asking other relatives to chip in and help. I have two sisters who have their families and jobs who try and pop up yo give me a break but it is so overwhelming and I don't think I can do it any longer as I have no life.
I love my Father deeply and want the best for him but he doesn't want to go in a home and some family members are getting angry with me in suggesting it. I also fell in love with a wonderful Dutch man who we both planned to start a new life together in The Netherlands and that has been put on the back burner.
I am carrying such guilt for wanting a life and I broke down crying to my sister today saying I can't do this any longer.
I feel mean and selfish as he is an excellent loving Father and as a daughter I should be looking after my terminally ill Father but I'm so stressed and cry secretly. What can I do?

Re: Having an emotional breakdown

Posted: Sat Oct 07, 2017 7:59 am
by jenny lucas
Dawn hi and welcome to the forum.

Dealing with a terminal diagnosis is incredibly hard - hard emotionally, because love and fear are all intermingled, but also hard in a practical sense because of the 'everyday ongoing demands' it makes.

I get the feeling you are overwhelmed on both levels.

Putting aside the emotional turmoil, let's look at the practicalities.

First off, and I know this sounds grim, but it does have to be faced, and it's important to do so as it will enable you to 'pace' yourself, is this: What is your father's actual prognosis in terms of life expectancy? The term 'terminal' is always somewhat ambiguous in cancer, as it's often used, including by medics (who should know better, but there you are!) as an alternative to 'incurable'. Your father's cancer is 'incurable' and in that respect yes, it is terminal in that it will, in the end, cause his death.

BUT, the big quest ion is 'when'. Some patients diagnosed terminal can last a long time! (I've known one lasting nine years and still going strong - even though ther cancer is incurable, it is being managed, with drugs etc, and she is 'staying alive' so far, though she knows she will die of it at some point.)

So, this is why I think you do need to ask your father's doctors (more on that below) just how long do they think he has? Now, whatever they tell you, they can only go by statistics - ie, that most patients of his age and stage of cancer, and with spinal penetration or whatever, last xxx - they can't say exactly. Some patients do better than the statistics, some do worse. Many die not of the cancer itself, but of 'co-morbidities' - ie, the cancer causes other problems, which then prove lethal. But the doctors should be able to say 'min-max' ie, if he does poorly it could be as little as xxx but I he does well it could be as much as xxxx, and that will be your guidelines.

Once you know that 'min-max' that enables you to see the 'bigger picture' and as I said above, to realise just how you will have to 'pace yourself' (both emotionally and practically, ie, the actual practical impact on your life - eg, if you decide to stay and 'see him out' or join your partner and start the next stage of your life etc etc)(again, more below).

The next big question to get answered is this - what is his current condition, and how will that deteriorate and over what timescale. You don't mention just what your dad's current care needs are - ie, is he bedbound, incontinent, immobile, unable to prepare food for himself, get to the bathroom, etc etc etc - but it's important to understand how those will increase, and, again, sadly but essentially, how 'end stage' will present.

In respect of 'end stage' (the final stage of the disease), is it likely to last a matter of days, or weeks, etc etc. And, perhaps most importantly in practical terms, can it be managed 'at home' (again, more below) or will he need to be in hospital or hospice (you are mentioning 'a home' so are you envisaging a residential care home?)

Once you - AND your siblings! - have a good understanding of all this, then you can begin to plan his 'final care' (ie, the care he needs from now on, through to the end). This is something that will require a family conference - but it also requires input from your father.

Am I right in suspecting that what your father most wants is what, after all, most of us would want for ourselves, ie 'to die at home'? I know I would, and it's very understandable if that is what your father wants.

It may be possible, it may not.

You don't, if I may say, mention any involvement from the GP and/or local hospices. I am assuming he is under the care of his GP for 'daily nursing care' (or will be). Has he still got any hospital treatment (or, indeed, any treatment at all), and is he still being seen by a lung cancer oncologist, or has he been passed to palliative care (because he is terminal and untreatable) already? When did he last see a hospital consultant (whether an oncologist or a palliative care consultant?), and when did his GP last see him?

The GP's surgery should have contacts with local hospice organisations - some hospices provide 'hospice at home' care, and this is wonderful. It will likely be a combination of nurses from the GP with nurses/carers from the hospice, working in tandem. The hospice may be able to provide sitting services as well, just to give you/your siblings 'time off'.

The next big area to address is financial - can your father afford to employ private carers? If he has less than £23,500 in savings and income (but NOT the value of his house)(I've just checked this myself recently in respect of a friend's mother), he should, I understand, be eligible to 'free' visits from care-workers supplied via the council. This may not be a total substitute for what you and your siblings do, but it could be a very real help to you.

Overall, my message is - sit down with your sisters and work out a Care Plan for your father, once you know his prognosis and increasing care needs until the end arrives. That will give you more of a sense of 'control' and less 'helplessness' that is overhwheming you now.

It's going to be a difficult and distressing time, and a great deal will depend on just how long it is going to go on for. one of the first rules of caring is 'what we can do for a while we cannot do long term/indefinitely'.

Finally, are you in touch with Macmillan? They have a LOT of information and guidance as to what is available to support both the patient and the family at this dreadful time.

Kindest wishes to you, Jenny

Re: Having an emotional breakdown

Posted: Sat Oct 07, 2017 10:22 am
by bowlingbun
Hi Dawn, welcome to the forum. I was separated from the love of my life for 18 months, when he was in Australia. I can assure you that if you really love each other, you will be together eventually. We could only correspond by letter once a week, at least you can keep in touch as much as you want.
Did anyone explain to you about the support available to dad? Did you fly home thinking it would be just for a couple of weeks? It's time to take a long hard look about your situation, and dad's and then work out from there what needs to happen now, in the longer term.
As a teacher, try to put on your professional hat and deal with this as a project, keeping as emotionally detatched as possible when dealing with these things. Maybe, like homework, set aside a particular time of the day to deal with them. Have a ring binder with a simple diary record. Have a section for each subject, Draw on your teacher's skills.
I'll start with the touchy subject of money! Can you actually afford to be dad's carer? Did you hand in your notice to your old job? We all have financial obligations, we cannot ignore them.
Then there's dad's money, or lack of it. How much do you actually know about dad's finances? What happens to him from now on, where he goes, if anywhere, who supports him, and how, depends largely on his financial situation. Has he already given Power of Attorney to you for Health and Welfare; and finances? If not, this should be at the top of your list, as the situation can change very rapidly. Is dad claiming Attendance Allowance?
The GP will only be open and honest about prognosis etc. once this is in place.
Do you know anything at all about what is involved in "End of Life" care? If not, I suggest you google "Signs of Dying". There are some very good, gently written articles on the subject.
From this information, is dad staying at home a practical option? Are your prepared to provide personal care?
Other care options are available. Start by asking Social Services for a Needs Assessment, and possibly an Occupational Therapy Assessment for dad, and a Carers Assessment for you.
Google "NHS Continuing Healthcare Checklist Assessment".
Is there a hospice near your dad's home? Be sure to contact them asap if there is. The support they gave my dad, dying from prostate cancer, was brilliant. If not, then find out more about the local nursing homes.
Then the worst subject of all, the final arrangements.
Once you know dad's financial situation, it is time to start thinking about funerals I'm afraid. How much can he afford? Which company will you use? When my mum was dying in a nursing home, I contacted the funeral director I'd used for my husband, and told him what the situation was, and told the nursing home.
I already knew which hymns mum wanted, and who to invite. Do you know where dad's address book is, or his Christmas card list? Who would he like to see before he passes away?
I wrote to everyone on our own Christmas card list when my husband died suddenly, giving details of where and when the service would be, and asked them to contact the funeral director, not me, for details.
If he owns his house, do you know where the deeds are, who his solicitor is?
Has he made a will? Where is it?
It is difficult thinking about and dealing with all these subjects when someone is dying, but far, far easier than to be presented with them later.
I've addressed this to you, but of course involve your sister and other family members as much as possible.

Finally, crying will help release all that emotion about so many things, I cried many times, usually in the evening in private. Come back here whenever you want. Some people criticise me for raising very delicate subjects, sadly it has fallen to me to help make final arrangements for six members of the family in fairly quick succession. I can only tell you how I approached the saddest situations.

Re: Having an emotional breakdown

Posted: Sat Oct 07, 2017 12:01 pm
by bowlingbun
Dawn, apart from the practical stuff I've already mentioned, feel proud for what you can do, not guilty about what you cannot. Dad is lucky to have children at all, even luckier to have them currently close enough to be with him, to know that he is loved. Do you have any old photo albums which you can talk about together, and remember happy things? This is a very precious time for all concerned.

Re: Having an emotional breakdown

Posted: Sat Oct 07, 2017 1:31 pm
by Dawn_17101
Thank you so much for your responses its nice to hear sound and excellent advice from people who are in the same situation or who are able to give advice. I did ask the doctor when he has was in hospital about his life expectancy and I got the feedback of it could be months or even years.
Due to pressure sores he is visited every two days by district nurses and due to being under palliative care he is also seen by St Barnabas hospice once a week. He was last seen by his GP over two weeks ago as he had a chest infection.
He can dress himself somewhat and have a strip wash as he is unable to gave showers due to the dressing on the bedsores and he wouldn't be able to step into the bath where the shower is anyhow. I do all the house cleaning, shopping, cooking and assist him washing his hair etc.
He does have a life line fitted with a button on his wrist due to Hus inability to stand for long periods of time and his weakness on his feet.
He is getting attendance allowance and receiving the highest bracket. I am still waiting to hear if I can be awarded carers allowance and income support.

Re: Having an emotional breakdown

Posted: Sun Oct 08, 2017 10:04 am
by jenny lucas
Hmm, the issue of life expectancy is the heart of the problem that you face, I fear. If, say, the doctors are saying ' six months at the most', then, as BB says, you could, relatively reasonably, put your own life 'on hold', keep your new partner 'on the back burner' so to speak (managing, I hope, with regular visits by him to you, and even you to him, but effectively, half a year of a 'distance relationship'), until you have, I'm afraid 'seen your grandfather out', and then you can pick up again on your own life, knowing you gave those precious months to your grandfather.

BUT, it if is a matter possibly of 'years' then that is a MUCH more complicated scenario. In a way, you are between the devil and the deep blue sea. You could decide, OK, so if it truly could be 'years' (eg, two, maybe three?) then I would say that it is 'too long' for you to put your own life on hold as you are doing now, AND to take on the full time care of an elderly man with care needs that are substantial already (even if those needs are 'housekeeping' ones predominantly at the moment), that will only increase massively as end-stage arrives.

BUT, of course, you could make the decision to 'bow out' of doing all that you are doing now - and then he takes a sudden turn for the worse, and end stage arrives in months, not years at all, and then you may fear being lacerated with guilt that you 'bunked off' so to speak!

BUT, again, I think that that latter risk is worth taking. Yes, you might feel you made the wrong decision to reclaim your own life (ie, more than you have now), only for your grandfather to die in months 'after all', but the timing of his death is neither your responsibility nor is it accurately prognosable. Just as cancer hit 'out of the blue' with no particular likelihood, so you can't really 'wait endlessly' on the offchance that it will become immediately lethal in the short term.

I think this is my saying, in a rather long winded way, sorry (!), that given that there is a real possibility that the current situation could be more or less the same in, say, this time next year, then I do think that a family conference is necessary to discuss just how your grandfather can now best be looked after for whatever time he turns out to have left.

That would enable you to pick up your own life again, but, perhaps, be 'on standby' so that if, say, your g/father's health suddenly deterioriates and it DOES become a matter of weeks or a month or two, then you could take up your day to day caring role again to 'see him out'???

I would say, though, that now is the time to think through alternatives to you living with him, looking after him daily, devoting your entire life to him, and putting your own life totally on hold. (One of the lesser discussed but still very real aspects of 'elder caring' as I found myself in the months I tried to look after my 90 y.o MIL with increasing dementia, all on my own, in my own home, was just how BORING it becomes! Their lives are very 'limited' and their interests not likely to be ours (!), and it does mean WE have to live as a very old person ourselves!! :( )

What's the situation with your new man? Do you think there is any chance that he could relocate to the UK for the remainder of your grandfather's life? Could you both settle near enough to your g/father to provide some care (eg, weekends), in a rota fashion that 'shares' your grandfather between you, your siblings AND professional carers? If that sort of 'hybrid' set up would work, that might keep going for a while?

I do understand why your g.father does not want to go into a residential care home, but sometimes for the elderly and infirm it has to come to that. One of the mantras we use on this forum, is to remember that, in the end, it is not what either you, or your grandfather may WANT, it is what he by then NEEDS. It is sad, but true.....

Re: Having an emotional breakdown

Posted: Sun Oct 08, 2017 10:16 am
by bowlingbun
If it could be years, then you were misled from the start! Who did this?!
How you approach things now depends largely on how well you and dad get on, can you chat about anything, or does he clam up? Is he aware of the sacrifice you have made of your own life, or did he just assume you would come running? Does HE know about his possible life expectancy?
The bath issues is easily sorted, by asking the Occupational Therapist to arrange a "rise and fall" bath seat. My very disabled mum had one, and so could continue her usual bath every day for many years.
From the list of jobs you've given, if you go back to work, then he mainly needs help with domestic tasks. If he has over £23,000 in savings Social Services would expect him to pay the full cost of the domestic help, otherwise they would fund part of it.
Have you discussed the Power of Attorney issue with him?
Have you discussed his financial situation with him?

Re: Having an emotional breakdown

Posted: Mon Oct 09, 2017 7:41 am
by Dawn_17101
Thank you again for the advice, I've called for a family meeting today with my other siblings and my Father and I'm going to read from a lot of your suggestions as to what we ALL should be doing etc. Hopefully this horrible situation can be dealt with as it should. I am prepared to stay until January which is basically devoting 5 months to my Father and if need be after that I can come back for a few weeks as and when needed, I am now thinking my want for a new life to begin isn't selfish.

Re: Having an emotional breakdown

Posted: Mon Oct 09, 2017 8:28 am
by bowlingbun
Hi Dawn,
That sounds like things are now moving in the right direction. Setting a target of January (presumably the start of the new school year in Indonesia?) is a good idea. It will mean that you can all try and make this Christmas extra special.

At the meeting, I wouldn't say anything about "coming back for a few weeks if needed". You've done your bit. If the others are married with families, then that should give you even more right to go back to the man you love so you too, in time, can be married and have what they already have.

Dad's main care needs to be arranged independently of all family members.
Carers to come in as needed to help him get up, dressed, breakfast, lunch, and tea/bed. You all need to think about being care managers, not care providers. That's what I did for my mum. There will always be lots of things which carers cannot do. Go to the bank, buy clothes, find shoes, etc. etc. As dad goes downhill jobs like this will inevitably increase.

The biggest issue will be where and how dad lives from now on.

Dad does NOT have a choice of staying home with family carers because that is too much of an imposition on everyone else.

The choice is between
staying home with outside carers, or
moving into residential care (it must be a home which offers social care and nursing care, so he will never have to move again).

Dad needs to accept that if he has very high care needs (especially a syringe morphine driver at the end) then you cannot promise that he can die in his own home.

Perhaps one of the other relatives (delegate, you are doing enough already) can make enquiries about local nursing homes, by looking at the Care Quality Commission website, visiting those nearest to dad's home first?

Good luck with the meeting, let us know how it goes.

Re: Having an emotional breakdown

Posted: Mon Oct 09, 2017 10:08 am
by jenny lucas
Yes, I agree this is definitely looking up and I think it's the right next step to take.

I would add, however, that it would be useful I think to talk directly to the hospice, and see what 'end of life' options may be there - for example, it could be that IF, say, your grandfather managers at home with other family plus professional carers, but at end stage needs more intensive care, and (sadly, sometimes, intensive pain relief), that a hospice could be the best place for him. If the hospice is 'in patient' why not visit while you are still in the UK to see it and 'check it out'? Most people say hospices are very peaceful, serene and supportive places, which because of their specialism are far better for end of life than an 'ordinary hospital' or even perhaps a care/nursing home??

I would also ask about hospice-at-home care. We had this for my husband (also cancer alas), and it was wonderful. It enabled, ie, with the help of daily nurses (split between hospice nurses and GP nurses)(they work in tandem usually), for my husband to be at home with his family, and that made SUCH a difference, so I do urge it as an option if it's at all possible.

I would also simply say that whilst indeed you will have more than 'done your bit' by January, personally I'd be on 'standby' for end stage, 'just in case' - are you actually returning to Indonesia, or will you be able to base yourself in the Netherlands? It would be great if it would the latter, as it makes returning home for 'visits' far less of an issue.

DO make the very most of your grandfather now, while you have him. I also urge family to get as much 'family history' gathered as possible. Get out boxes of old photos and go through them with him, and make up a family tree, and 'collect memories' and so on. I think this is invaluable not only for you, and your siblings, but for your grandfather too as he 'comes full circle' and makes sense of his long life, and is able to 'hand it on' to you, his grandchildren. Surely it will make him 'easier' about leaving this life when that time comes.

Wishing you all the best, and I'm sure your grandfather will also be happier knowing that you are now, as BB says, finding your own life partner, and 'settling down' for your own future, to do your bit in carrying the family into the next generation -

Kindest wishes at a very emotional time (and rightly so) - Jenny