Hi I’m new here.
I am currently caring for my 76 year old father who has Dementia and end stage prostate cancer.
As he is sole carer for my 9 year old half sister I have moved in with them both to look after both of them.
So um yeah it’s complicated and hard work. My father has refused to allow for carers even though he has been assessed as needing them twice.
So it has fallen to me. And my mother who divorced him 24 years ago and she also is unwell with stage 4 kidney cancer. She comes here to take over to allow me to be able to go to work. As I have to still work fulltime due to having my own house still to pay for.
I am also trying to go through the process of applying for a special guardianship order for my sister.
So yeah thats my situation. And its hard very hard.
I don’t know how much longer either myself or my mother can sustain this. In part as my mother id due to go into hospital herself for surgery on 27th Dec.
Scared doesn’t begin to describe the way i am feeling about my life at the moment.
I feel like I am limbo. And i feel like i have been picked up out of my life and plonked in someone elses. As the way I came to be here was very unpleasant and complicated too. I basically came here one day to visit for an hour and haven’t been able to go home since!
My life has spun on its head. I had got to the stage in my own life where having brought up my own 3 children single handed, the youngest are 23 (twins) and I was just getting some freedom. Lol
An alien concept now …freedom I mean.
Hi Suzanne,
I’m very sorry to hear of your situation. As I am sure others with more experience than me will be along to explain, the answer is that your father NEEDS carers even if he does not WANT them. Above all, you and your mother need help or he will have no help from either of you if you collapse from the effort, and indeed if your mother is recovering from an operation. If he has end-stage prostate cancer, can a hospice help - it doesn’t necessarily mean he has to be admitted. As someone said on another thread this evening to another member: the choice is not between you and carers, but it is between you plus carers, or full-time care in a home.
How did you come to be kept there if you just went to visit? You certainly need a care assessment for your father, and one which does not factor you in as living there.
This needs to be done urgently - unfortunately this time of year is one when all care is under a strain from holidays.
Hi Suzanne
I know that catapulted feeling only too well, and my catapult situation was over 30 years ago! I still remember it too well. I left my home after a late night emergency telephone call and didn’t return for 7 months. I went wearing odd socks in haste. It took a long time to fully get over, but get over it I did,a nd so will you.
First thing to do is tell yourself that Dad and your roles have reversed, you are now the Parent, and he has put you in that role by refusing carers, but as the Child now, he cannot refuse. He has a choice, carers and you, or only carers/residential care. You as the Parent are now the care manager, not the 24/7 sole care giver. There is too much going on for you to spread yourself over all the demands, and the only way is to enlist outside help. It’s good Mum is doing some, but you need more.
dad is probably in total denial about his situation but, as its terminal (if I read end stage right) you need to instigate the “difficult conversations” of which the most urgent must be the future care of the 9 year old, finances and legalities. Everything else need ‘subcontracting’.
Have you tried his local hospice for advice? They are used to the “difficult conversations” and may be able some kind of help at home - our local one has a brilliant “hospice at home scheme”
Also has anyone any idea how long he may have? I only ask because most of us can cope short term, but no one can do 24/7 for months on end.
Is some form of residential care an option for him? Is the 9 year old going to live with you? My gut feel is that you concentrate on her. Sadly his life is near the end but hers is still ahead and that’s where the effort needs be.
Sorry if this is all questions and ‘shoulds’. You do have a complex situation.
What do you see as your biggest problem? What 2 or 3 things would really make a difference?
kr, and (((hugs)))
MrsA
Hi Suzanne,
Are you getting any help from Social Services for the child involved?
Do you have a home of your own to go back to?
Does dad own his home?
The answers to these questions are VITAL ASAP!
(I’ll be back later, appointments soon).
I’ve had a kidney removed. You CANNOT nurse mum afterwards. She MUST either have carers to do everything for her for a few weeks, or go into a nursing home or rehab hospital. I was home after just 5 days but my husband was here to look after me. I described myself as a “delicate flower” for months. Could sit on the settee, potter round the house, chat to my business customers, but could do nothing that involved any strength. (Tell her to get support to take gentle walks, really helpful to reduce the swelling and make her feel better. She will be bent double when trying to walk, like neandearthal man! but will soon straighten up. With the support of my husband, I walked 2 miles 2 weeks after surgery! A keen walker, I could walk 10 miles again 9 months later.
Where is the child’s other parent?
Dad is clearly burying his head in the sand. Is he receiving Attendance Allowance (mum too?) Have you investigated which funeral director you will use? Do this in advance, so much easier than doing it in a crisis.
Has he given you Power of Attorney?
Hi Suzanne.
A potential kinship carer ?
For what it’s worth , the main tread on kinship caring … some of the postings and links thereon thereon may be of assistance :
More information on kinship caring ?
Just yell … and I’ll do some digging.
Special Guardianships perhaps ?
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I am also trying to go through the process of applying for a special guardianship order for my sister. >
Thank you for the replies. To answer a few questions…
My father is in denial, we do have a palliative team involved, including a social worker.
They have pointed out to me that “people have the right to make poor decisions about their own care”
He has been assessed for capacity recently ( in order to make a will) and deemed to still retain capacity to make decisions for himself.
The extent of the palliative teams involvement is a once fortnightly visit or therabouts as atm he doesn’t require nursing assistance. He has been into a hospice twice in recent months for 2 nights at a time for blood transfusions. He does get confused is barely eating and I feel the end is imminent for him.
I have also had some counselling provided by the palliative team as has my little sister.
I have also contacted a support worker in regards to my sister. Her mother is incapable of looking after her and so I am in the process of trying to purchase my fathers house to stay here and bring my sister up here. There is a small amount of mortgage outstanding on the property. And my father has some outstanding debts so I am trying to borrow enough to pay this off secured against the house in my name.
He is being selfish and unreasonable but is obviously scared and anxious and doesn’t appear to grasp the effect his choices are having on anyone around him.
My mother has already had her kidney removed some years ago but it had spread to her bones prior to diagnosis so it is incurable and her opertaion is to get her stoma possibly reversed as the chemo meds have perforated her bowel after years of taking them.
I do have the a social worker assigned to me from child services who has had the case notes for a number of weeks and he needs to assess my suitability for the special guardianship order…but as yet he is unhelpful and has not taken any action other tham telling me I need to prove I can financially afford to bring up my sister then refuses to see me outside of my working hours meaning I will have to take even more unpaid time off work for this assessment if he ever bothers to arrange it.
So he is jeopardising my employment with his attitude as my employers are reaching the end of their patience with me and I am about to be disciplined for absences. Lol
So yeah it’s a huge goddamned mess.
I agree that my priority has to be my sister but currently I have no legal rights to remove her from this toxic environment…but apparently my being here is her “safeguarding”
And Mrs A
The things that would make a difference…
Some certainty of the future for my sister. As the unstable situation regarding guardianship is weighing heavily and
my father accepting carers, if only to give my mother a break.
And a reliable affordable childminder!
It’s a wretched situation all round - and definitely ‘complicated’. It got complicated the minute a man your father’s age had a child by a woman who is now incapable and unsuitable to take any care of her own child…boy, what a mess!
But there we go, life IS complicated for a lot of people ,and you, it seems are caught in the crossfire.
Whatever went wrong with your mother’s relationship with your father, I think you have to see your priorites as:
(1) Your sister (and of course you see this as your main priority, which it is, and all would agree on that)
(2) Yourself - as you are the BEST chance this little girl has of having ANY kind of ‘decent childhood’ (ie, with you are her ‘surrogate mother’. That’s why I put you ‘second’ in the priority list. You are important FOR your little sister.
(3) Your mum. Like it not, your poor mum IS ‘terminal’ and therefore her longevity is a question of ‘time only’. That said, hopefully she can manage to keep going for a good while - terminal patients are, as you probably already know, living for longer than ever now, courtesy of new drugs and new treatment. (I’m curious that she was on ‘chemo’ - this isn’t usual for standard kidney cancer - was it ‘bladder or transitional’ cancer, rather than actual ‘kidney’? Kidney cancer is usually treated by a nephrectomy and then either the ‘old fashioned’ immunotherapy (eg, IL2) or, more recently, the latest targeted drugs such as Sutent and various others of a similar nature, and most recently the new immunotherapy drugs (can’t remember their names, they are anti-PD1 drugs). When it’s in the bones then it’s a question of strengthening the bones as much as possible I believe. But, overall, longevity for terminal kidney cancer patients is ‘on the up’ so I hope that is the case with her as well. (If it’s transitional or bladder then I have no idea, or the rarer forms of renal cancer either).
(4) Your dad. He is not only the oldest but also the ‘illest’ and so, sadly or not, has to be at the end of your priority listing.
Does your little sister have any kind of ‘legal advocate’ for HERSELF? Others here know more about the rights of a ‘dependent’ but she herself should surely have more ‘power’ to say what SHE wants, and to have HER interests put foremost. I find it ‘weird’ (to put it mildly!) that the SW is querying whether you can afford to raise her yourself, given that the alternative - unless there are some other relatives as candidate for her guardianship! - would be to put her into care, which costs the government a FORTUNE (pus usually results in very screwed up wretched children, sigh). Have you considered fostering, by the way? You would, I believe, be paid to look after her, unlike if you adopted her?
It’s very sad she is losing her dad, but hopefully she will grow up thinking of him more as a grandfather because of the huge age disparity. Are there any other relatives on her mother’s side at all, and could they be part of the solution, or just more of the problem, like her own incapable mother??
All in all, thank HEAVENS’ the little girl has YOU - you do sound THE most capable and ‘sane’ of them all, and I very much hope that before TOO long you will have the legal guardianship and the emotional and practical raising of this little girl. It’s great that her ‘stepmother’ (your mum) is well disposed towards her. She, presumably, can be as a ‘step-gran’ perhaps???
Wishing you as best as possible in a very, very wretched and sad situation …
Yes Jenny. My sister is my priority here
And you are right to point out that the Kidney cancer treatment was nephrectomy followed by Sutent and then pazopinib (.? Spelling of that one ) seeing as they poisoned her and left her with a perforated bowel they are just as harmful as chemo and can be but far less effective, as they slow the progress only and don’t stop it.
There are no suitable relatives on the mothers side as the maternal grandmother is elderly and has schizophrenia herself.
You are quite right that my father was not thinking straight having a child at 67 with someone half his age who had obvious issues herself. But shes here now. So i’m trying to focus on how best to help her and give her a decent chance at a “normal” life as so far she is aware its not the norm to have a parent that age.
So far the hurdles seem insurmountable but i am still clinging onto the hope that it will all get better at some point. Unfortunately that point is probably the death of my father. Sad to say.
I’m glad your mum was able to have the targeted therapy - don’t feel ‘too bad’ about them not ‘curing’ your mum. There IS no cure for secondary cancer - it is ONLY a question of keeping patients alive, and the cancer ‘down’…but not ‘out’. Only early stage cancer is ever curable (as yet). Secondary cancer (when it has spread to eg bones etc) is always considered ‘terminal’…
I’m sorry to hear the targeted drugs caused such dreadful ‘side effects’…
I do hope things ‘sort themselves out’ eventually (ie, before TOO long) and you can get confirmed guardianship of your little sister. Sorry her maternal relatives are all ‘useless’ in that respect. She is lucky you are on the scene - otherwise her prospects would be grim indeed, poor child.
I hope you can look forward to a time when, maybe even next year, all this is ‘over’ in that your father is no more, and your sister is settled with you…and hopefully your mum has ‘stabilised’ as well??
Thank you for the kind words and suggestions to all who replied.
It is comforting to know that there are people who have had similar experiences and whilst the circumstances are different from one case to the next, I am sure the range of emotions are pretty similar. Mine flip between resentment, fear, hopelessness, empathy, sympathy, worry and abject terror! Not to mention the emotional and physical exhaustion.
Thank you x
Why are you trying to buy the house? Who will inherit it under the terms of the will?
Suzanne, if you think dad is near the end, then Google “Signs of Dying”. I did this when my mum was in a nursing home, going downhill fast. You will find good articles written by people who have worked in hospices.
Realistically, if that is the case, it’s too late to buy the house.
When I was snowed under, I found it helped to write down everything that was bothering me, and put it in order - easier on the computer. Then shuffle it into priority order.
Sorting out who is going to manage dad’s funeral arrangements should be top of your “to do” list right now. Who will you use? Who needs to know? What music? I know it’s hard, but even harder just after a death.
You need someone to support you. Under the Care Act, you and your sister are both entitled to an advocate. Ask Social Services to arrange this urgently for you. I have one now, and so does my disabled son, it really helps to go to meetings with Social Services with someone else on your side, not theirs!
I don’t know much about the legalities of caring for a child that is not your own, however, I Googled “Kinship Carers” and apparently there are allowances available up to £179 a week! I didn’t have time to read everything.
Can I ask what sort of work you do, and could you go part time? Your employer has a duty to make “reasonable adjustments” for you as you are caring for someone with a disability, “Disabled by Association”.
You are under so much pressure at the moment, the more you fell in control, the easier it will be (at one time I had five relatives at the same time all entitled to highest disability benefits).
Counselling helped me set my priorities. Son with LD came first. Mum could speak up for herself, he couldn’t. Your parents are nearing the end of their lives, but can speak for themselves. Your must focus most on the innocent victim of all this, your sister. Make this clear to both parents, they won’t like it, but you simply can’t be all things to everyone. If they refuse carers, then you cannot fill in that gap. Their choice, but also their responsibility to live with the consequences.
Come back here whenever you want, there is a long journey ahead, and next year is going to be tough. Many of us her have lost at least one parent, feel free to ask whatever you like.
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I don’t know much about the legalities of caring for a child that is not your own, however, I Googled “Kinship Carers” and apparently there are allowances available up to £179 a week! I didn’t have time to read everything.
The link to the KINSHIP CARERS thread posted earlier … one of the links off of that will provide some insight as to what is available for a potential kinship carer … different ball game when compared with a family carer.
Also , another link to the whole issue of " Guardianship " … which is a specialised field , normally beyond the understanding of front line social workers on most manors.
For kinship carers , knowing that they ARE a kinship carer is half the problem !
That " Problem " is one of the reasons why I started the main thread in the first place !!!