Chicken boarders

[alih]

I thought this would be a good place to start. My dad is bedridden with terminal prostate cancer. He has various medical needs which mean he can't be left on his own for more than a couple if hours at a time. My mum has been his sole carer, with the odd visit from the district nurse and help morning and night for about 10 minutes from social services carers.

 

She has been in hospital for a week and will be for another week having an op on her foot which may result in amputation either of toes or below the knee.

 

It all sounds rather melodramatic and I don't mean to. The 3 of us offspring have been muddling through with family and friends' support this week but I work full time and all 3 of us have young families of our own.

 

I am worried about my sister who is taking on the role of carer slowly but surely and wonder what experience you sensible lot have had, if any, of this sort of situation. Mum won't be out of hospital for a while and when she is she will of course not be able to do very much for a while.

 

We are in touch with various care agencies and charities but it all seems rather piecemeal and I would be grateful for any advice about who to contact to get practical help - cooking, ironing etc along with a bit of medical know-how.

 

Many thanks in advance

[chicken bark]

There must be lots of people out there who find themselves in your situation. I am sorry that I can't be any help.

I just wanted to say that my Mum ended up being the sole carer for her husband - he had a form of Alzheimers. The care he ended up with was very piecemeal, inconsistent, inadequate, degrading etc.

 

The good news is that you should be in a better situation as there are more cancer charities out there and they have much more comprehensive care. My Mum also ended up looking after an elderly Aunt with cancer and she had a lot of support from Macmillan nurses.

 

The biggest problem is getting either social services or the NHS to take responsibility. Both can pass the buck.

 

I really hope that you get some proper help for your parents.

 

My heart goes out to all carers out there - they are usually family members and deserve more recognition.

[Tutti Frutti]

I am so sorry to read about your parents. It will take its toll on all of you so be sure to take good care of yourself - it's easy to forget when it becomes so all-consuming.

 

Can you contact MacMillan and Marie Curie? My Mum's Macmillan nurse was an absolute star and got Social Services involved, arranged the home help to attend and also set up the right benefits for my sister, who gradually became my Mum's carer. She was also the key to getting my Mum a place in the local Hospice. It was lovely - so serene and calm and with total compassion and understanding.

 

I wonder if your Dad could get some help through them so that you don't have to spread yourselves so thinly with looking after your Mum as well?

 

The one thing I found very, very difficult (on top of all the obvious) was being further away than my sister, feeling out at a limb, feeling guilty at my sister taking on so much, and we all felt... sad that our Mother-daughter relationship was consumed by this awful illness and our relationship with our Mum became patient-carer

 

If you can avoid falling into that pitfall - so having the district nurse doing as much as possible - then you'll be able to protect the parent-child relationship so you can have good memories, not all bad...

 

I hope I haven't waffled too much. I really do sympathise, it's such a difficult time... {{{HUGS}}}

[Seagazer]

I'm so sorry alih, it must be such a difficult time for you and your family. I don't have any experience of this but was going to suggest contacting Macmillans/Marie Curie as Tutti Frutti has suggested. Age Concern (think they may have changed their name?) might be able to give some advice and help too.

 

There must be people at the hospital that can help to get things organised as well for your parents, have they helped or suggested anything at all?

 

Don't forget to take care of yourself too at this time.

[sadietoo]

I am so sorry to hear your plight. I am an only child and currently my Dad (a widower who will be 80 in June) has been diagnosed with Myeloma a form of cancer, I too work full time. I know this sounds kind of heartless, but I have made it quite clear to the powers that be that whilst I can help with the shopping and outings, I am not available for day to day care Although we live relatively near him, I work about 20 miles away. In the experience of my friends, the problem is the more the family step in and do, the more Social Services are slopey shouldered about the whole thing.. If you stand back a bit, they take up the slack.

 

As I understand it Social Services are required to do an assessment of needs for people in your parents situation, and so they should be your first port of call. I believe you have to be quite insistent about this, but I was fortunate that Dad's assessment was completed whilst he was in hospital receiving his first lot of Chemo. He has someone coming in in the mornings to help him wash and dress, and (supposedly !) someone doing the same thing in reverse in the evenings...we are currently battling that one, (tbc) Age Concern should be able to at least tell you what your rights are. Your Dad and Mum will be expected to pay a contribution towards their Personal care and this is based on their income and savings. Any Nursing Care is provided free of charge.

 

I assume they are receiving Attendance Allowance which will help with some of the costs. If they don't already have Careline then they can have it and I think I am right that Social Services will pay for it (fortunately my Dad is in a flat which has a warden and is wired with alarms already )

 

Dad still cooks for himself, preferring to do that (he has a micro-combi oven on the worksurface so it's the right height for him) but as well as good old Meals on Wheels there are other services out there who deliver a hot meal to elderly people at lunch time, and perhaps offer a wider choice (for a price).

Looking after an elderly person is scary exhausting and at times infuriating (before his diagnosis he wasn't receiving any care, and I was trying to do what I could).I can't tell you how much piece of mind it has brought me to know that Dad has someone helping him in the mornings.

And the upside is that when I see him at the weekends I am not so exhausted and resentful of the additional burden his care would place on me that we have a lovely time together, (mostly !)

 

oh and then of course there is the guilt..Ok everyone join in now..the mantra goes.."I am doing everything I can for my Dad to make his life more comfortable and enjoyable"

 

Good luck...sending hugs

[alih]

My goodness thank yo for your quick and caring responses.

 

The district nurse is great as is the Macmillan nurse but Macmillan have effectively said that they really don't organise peripheral care or full-on care until the patient is much closer to death.

 

I have though of Marie Curie and Sue Ryder apparently do a good job, and am so grateful for your suggestions.

 

Mum had already sorted out the attendance allowance etc .

 

I am also so glad and relieved to hear about those of you who work. I feel dreadfully guilty that I can't do as much as my sister but I'm afraid I too am quite determined not to be sucked into that guilt/resentment cycle or trying to bust a gut to provide care when in reality my 4 children are my priority and I literally do not have the time to step in on a regular basis.

 

I am very worried about my sister and although we are extremely close there is already friction as she is convinced we can all just muddle along and that when mum comes home she will be ok. It is partly denial of what is a very grim situation but it doesn't help get things sorted.

 

I have been told about being careful not to let social services think we can cope as they will let us! But both my parents and my sister are sending them that message. And as she is not at work she is the point of contact and has been very good at phoning round etc. so I can't criticise or complain.

 

I think I will speak to Marie Cure, Age UK and Sue Ryder and see what they can do. I believe it will be better for everyone if there is a formal care system in place and we can visit, help etc without feeling tied.

 

Anyway sorry to witter on. I am usually very robust and matter-of-fact about these things but I am not sure of how best to approach it all with either my parents or my sis who will undoubtedly feel I am treading on her toes. She has already said she won't go on holiday as she doesn't want to abandon them. Whereas I am taking my kids away for 2 days and am not going to give up on that break unless there is a real crisis.

 

Sorry this has become a mini-confessional. I much appreciate all your support and advice. Thank you.

[Space Chick]

I do sympathise, I am sole carer for my Grandfather who lives alone a few miles from me, and I work full time and travel between 50 - 200 miles a day depending where I am. It is exhausting, and I have recently got social services involved. (He had a fall on the weekend and I found him collapsed on the living room floor, he's now in hospital)

 

But it has taken time for 1. Him to realise he needs more help than I can give him (I would love to do more, but its so hard when you work full time, I can't be there 24/7) and 2. For there to be an "event" serious enough for social services to consider him.

 

I have my appointment with them tomorrow..... wish me luck

[poachedegg]

Sorry, can't offer any advice, just wanted to say that I hope you find the help and support that you and your family so obviously need........and lots of virtual hugs as and when you need them.

 

Good luck tomorrow Space Chick.

[Olly]

I sympathise, it's a few years since I went through this with my parents who are now both dead, but there's some good advice above. Social Services should be involved - apart from anything else, they must not discharge your mum from hospital until they have assessed the situation at home and determined how her needs can be met.

 

It is a very trying time, and sorry to say that you will have to push and push for things; Age Concern/Help the Aged are very helpful and produce some brilliant advice leaflets. Sometimes you do have to be very hard, though, and say 'no, I can't look after him/her' to ensure that they get the help they need - if you start doing it, you'll find you have taken it on for good.

 

It's so hard when one family member is closer geographically than others - perhaps there are things you can do (like phoning Social Services, etc) that could be done from a distance. The important thing is to all keep talking about things - but don't let your guilt, or your worry about your sister's feelings, get in the way of what's best for your mum and dad.

 

DON'T feel guilty about the way things are - if your own children were in this situation, would you want them to give up their own lives to look after you? I bet you wouldn't. Your life, livelihood, home and family are important to you, and carrying on with work and family things doesn't mean you don't care about your mum and dad - it means you're trying to maintain a healthy balance. I hope you can find the help you need - push, shove, shout, scream and complain till you get what your mum and dad need.

[Tutti Frutti]

It's so hard when one family member is closer geographically than others - perhaps there are things you can do (like phoning Social Services, etc) that could be done from a distance.

 

So true. I'd forgotten that I took on the "phone/fax" everyone including GP to get the wheels in motion. I did what I could to help.

 

don't let your guilt, or your worry about your sister's feelings, get in the way of what's best for your mum and dad.

 

One of the things we did was arrange a family meeting. Mum and us kids all together, talking openly about it. Mum had a home help but hated it and wanted to cancel her, despite all our hard work and effort to get it all arranged Sister wanted to volunteer. Brother and I warned that we'd be unable to be as involved - he works too but lives locally, I work and live miles away. We discussed all the pros and cons. In the end we agreed a plan. As time wore on, my sister's offer of every other morning became ALL DAY every day. I'll ask my sister now what she thinks, whether she thinks she did the right thing. I think at the time she was desperate to help but, towards the end, the Mother-Daughter relationship fizzled away. My Mum even once introduced her to someone as her carer and that really hurt my sister. I became the odd-jobber - when I came down to visit her, she'd have a list of things for me to do ranging from gardening to replacing tiles on the kitchen floor We never did the simple things like sit down for a chat over a cup of tea. Christmas, Mother's Day - all those last, special days when we should have been making treasured memories were lost to the whirlwind of caring for someone with terminal Cancer.

 

It got really, really hard as her illness took hold and affected her marbles. Looking back, I lost my Mum 18 months before she died - maybe even years before.

 

Sorry to waffle and off-load, but if it helps you avoid the pitfalls by hearing from someone who's come out of the other side, then some good has come of it.

 

I have my appointment with them tomorrow..... wish me luck

 

Space Chick, my Mum had Multiple Myeloma. Good luck for today

[alih]

Tutti Frutti that sounds really tough. It is exactly what I fear for my sister. We all live the same (very close) distance from my folks but she is the only one who does not go out to work.

 

I have suggested to both siblings that we have a meeting after the weekend when we know when mum is coming home to dicsuss between the 3 of us what our feelings and thoughts are so we all know where we are coming from.

 

I have left messages with Age UK and Sue Ryder.

 

And I had a frank talk with my sis today about not letting social services think she was available and not to commit to anything regular as it would eventually creep into her being a carer full-time. I have asked her to promise me she will tell them none of us are available to do regular care but I have no idea whether she will. My wise husband tells me that if she chooses to adopt the role it is up to her and it is not for me to boss her into any other mode. He is right of course.

 

I also try and speak to both my parents as though they are adults whereas the natural tendency for the others is to protect them and hide things that might upset them. My sis told me off the other day for telling my dad that my mum had problems with both legs not one and would need more surgery I have talked to my dad about where mum might live after he dies and he agrees she would be better in a one floor place.

 

Anyway, it's a long process. Thanks again for all your input which is veru helpful.

[Olly]

You know your parents best, and know what they will cope with - my sister too had a 'let's pretend everything is ok' approach, whereas I knew my mother would want to know exactly how ill she was and what was happening. Some people might prefer not to hear the truth, but certainly for us we felt a full and frank approach was best, and I am so glad we took that view. If your dad doesn't know what is happening, then you are denying him the chance to make decisions - if he's too ill to cope with that, then you'll make that judgement, but I think you are right to keep him informed.

[Chunkin]

I am a carer and I just wanted to add that it's not all bad. So, as your husband wisely says, if your sister does choose to take on this role you shouldn't feel guilty.

 

Although I sometimes wish I could return to my career, the reality was very long hours and time away from my family. It is undoubtedly physically and mentally tough being there for someone else 24 hours a day but if I hadn't taken this on my son would not have the life he now enjoys and I certainly wouldn't have my chickens, dogs and garden! Different stresses, different rewards, but whatever we do we cannot avoid them completely.

 

In my experience, once you have done your research to know what your rights are, both as a carer and as a disabled person (and charities or support groups may be better for a quick answer than social services), then it is just a question of persistence and dogged determination, and this is certainly something you can do to support both your sister and your parents as it is sometimes far too tempting to give up.

 

Every so often you will come across a wonderful person, either a medical professional or someone from social services, who will go over and above the call of duty to find answers and solutions, and these people should be treasured. I hope you find one very soon!

 

Sorry if this is a bit waffly, but I hope it helps a bit.

 

Very best wishes to you all.

 

Carol

[scarlettohara]

The only good thing about being registered as a full-time carer is that you wil get Carers Allowance which then entitles you to more help/benefits. Social services are a must - there are lots of grants available , not least respite, but you need their help. I was a carer for my ex-husband and it is hard work - make sure you get everything you are entitled to.

[Space Chick]

Just thought I'd update that initially Grandad is getting some support from Age Concern, as it was felt he didn't need nursing care. They are doing an initial 6 weeks and will review.

 

I will keep you posted, but looking positive so far

[Plum]

Red Cross often do a short term service to support people with domestic activities. Intermediate Care teams will also put in short term support to get over a crisis. Really Social Services should respond and provide a package while your mum is incapacitated after all you have all been saving a lot of money by supporting the family.

[alih]

Well it seems Mum will be home on Monday but "Ooops, word censored!"ody has yet been to assess at home which I gather will be happening soon (poss today). But I agree having spoken to very lovely and helpful people at the charities I have rung that social services should be doing most of it. At least it has been made clear that I can get additional help very quickly from place like Sue Ryder and Age UK. Thanks guys. Will share the experience as it all helps to get a picture.