Mums diagnosis confirmed

lyn

Registered User
Mar 7, 2004
25
surrey
Worse diagnosis confirmed

Hi, I hope all you caring carers are well. Mum is still in hospital. I saw her today, she looked absolutely awful. From a few days ago the weight has dropped off her, I don't think anyone watches to see what she eats.
It was confirmed today that she has inoperable cancer, bowel, liver & lungs. They have given her less than a year. I'm so upset. They want to send her home. She lives alone, how can they possibly send her home to an empty house when she doesn't know what day it is. Shes become doubly incontinent & the hospital said the SS will means test her savings and her property(she owns a big house) to fund her care. Shes soooo confused, I'd rather she was looked after at home where her surroundings are familiar to her rather than go into a home as I know she will fret herself to death. I dont know which way to turn, she seems to be unimportant to the hospital now they can't cure her. The Macmillan nurses have been mentioned. Do we have to let the SS means test mum? would we be able to fund her care at home without the SS getting involved. So far they haven't had anything to do with her. Any thoughts/help would be much appreciated. Lyn
 
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Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
Dear Lynne, it may be, that if your Mum is terminally ill with cancer, that you can get the care paid for by the NHS. The discharge team at the hospital should be able to get an assessment done if this is the case. I don't know if they will, but it's worth asking about. I can't find a fact sheet about it, but I know it does exist for someone with a terminal illness like cancer. AD is not counted though which is so unfair. Love She. XX
 

suem

Registered User
Jul 1, 2005
61
Worcestershire
So sorry to hear of your awful dilemma.You may find Macmillian nurses a great help in a difficult situation.Assume all your mothers capital is tied up in the house.Would it be feasible to do some equity release to free some money to fund your own care at home.You would have control of the cash.If SS are involved they may force the sale of the house if mother is taken into care and no one else has a claim in the house.
Speak to citizens advice they should be able to help
 

Sandy

Registered User
Mar 23, 2005
6,847
Hi Lyn,

Sheila's quite right, there is a fact sheet on NHS Continuing Care, I referred to it in a post last week:

http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?p=18124#post18124

I know that you've had to take on a lot in the past few weeks. Don't feel that you've been rushed into anything.

If your mother has been assigned a good social worker, they can help you look at all the care options and you can still retain the level of control that you want.

Care at home is possible, but it may mean that you have to be quite forceful in stating your case. Also, it takes considerable on-the-spot management to coordinate 24 hour care and medical support.

So many of the posts on TP echo your sentiment that a general hospital ward is not the best place to treat people with dementia.

Based on our family's experience of looking at care homes with nursing that care for people with dementia, I have to say that there are some very good places out there that have the specialist skills to nurse people with AD to the end of a terminal illness. I had to shed some of my pre-conceptions about care homes to see that these examples of great support and compassion were really out there.

Take care,

Sandy
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
Hi Sandy, knew there was one, just couldn't seem to find it. Thanks so much for pointing Lynn to it, lets hope it helps. Love She. XX :)
 

lyn

Registered User
Mar 7, 2004
25
surrey
Thanks to all who left messages. The information suggested was very useful. I spoke to a cancer care nurse today who was concerned with mum having chemo we agreed it was out of the question, mum is so frail would have no idea what was going on and it wouldnt benefit her at all. I made it clear that mum wants to come home and end her days in familiar surroundings, she said that this was possible. I also mentioned that I do not want the SS involved, that I would deal privately with mums health care but she seemed to think that mum would qualify for continuing NHS care at home. Well that has got me in a spin, I've been told so many different things, Im just waiting now to see what happens next. Firstly though I must get mum out of the hospital as quickly as possible, she has wasted away. Wish me luck, Ive got both barrels loaded & Im not going to take any prisoners! Mum is coming home to be cared for and thats that. Lyn
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
Brilliant Lynn. Now, the continuing care. This will be done by a team of carers to suit you and your Mums needs. They will arrange with you the help that is needed. This can be night and day, what ever. My Mum had it for the last few weeks of her life. I had her home to die, same as you want. The carers were from an agency but paid for by NHS like I said. They came in to wash Mum, change bed etc and to give me time to go to shops etc. We also had night sitters. At first this was just a couple of nights, but as the weeks went on, they arranged more. None of it was paid for by Mum as she was then terminal. Before, when she had "just" dementia, she had paid for everything (grrrr). You go for it Lynn, the carers who looked after Mum with me were lovely, if there are any you don't get on with, say you don't want them again. They will send someone else. (I only had one like that). My Mum had what she wanted, she died at home, surrounded by love. So can yours. Thinking of you, keep us posted won't you, lotsaluv, She. XX
 

Lulu

Registered User
Nov 28, 2004
391
hello Lyn. Do you have Marie Curie nurses in your area? I'm sure you would them them very helpful when your Mum comes home. You should be able to arrange something through your surgery/district nurses. Hope this helps you.
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
Lyn
just too say how I admire you for wanting Mum back home and care for her yourself,with help.
I hope all goes well for you
Warm wishes
Norman
 

lyn

Registered User
Mar 7, 2004
25
surrey
Dear ALL, thank you for your support. We have a meeting Wed to discuss mums care. They want to move her to some sort of home - EMI something or other, for Altzheimers and palliative care for her cancer invasion. Sis & I are not happy as weve seen/heard such horror stories of people not getting the care they need. Ive made it clear that the SS are not to be involved & we are prepared to go private if we cant agree where she should go. Sis has realised that she cant possibly cope with mums illness, Peter Pan took more of her marbles this week & shes almost delerious with confusion. Her cancer will need special care too but would they do all that at home. Ive been in touch with Marie Curie nurses, they are not too far from us, mum will need referring. Ive had her referred to St Raphael's Hospice but as they dont know how long shes got I think its just a place for 8 weeks or so. We just dont know what time we have. We are going to ask if they can support Sis & me 24/7 if needed but somehow I have my doubts. Will keep you posted. Lyn
 

Sandy

Registered User
Mar 23, 2005
6,847
Hi Lyn,

You have so much on your plate - so many variables to consider.

If you feel that your mother is being "pushed" into a particular type of care home and you want to know all of the local options, you might want to look at the Commission for Social Care Inspection's web site. They are responsible for inspecting and reporting on a variety of social care services - including care homes, nursing agencies and domiciliary care agenicies (the latter two might be relevant if you want to employ carers/nurses directly - although I don't know how this would apply with NHS-funded continuing care?).

http://www.csci.org.uk/registeredservicesdirectory/RSSearchCategories.asp?Action=SearchCats&Type=CRH

If it is ever relevant, you can do an advanced search using the CSCI web site for care homes with nursing staff which are designed for patients with dimentia and which can provide care for terminal illnesses. In some ways, such a place could have elements of hospice care, whilst being tailored for people with dementia and not having the time limits of a hospice. You can also read inspection reports online.

Take care,

Sandy
 

lyn

Registered User
Mar 7, 2004
25
surrey
Dear All, the meeting Wednesday was very stressful, they now give mum 3 months, suddenly whittled down from a year or so! We have been told that this entitles her to continuing NHS care. She has stopped eating and drinks a spoonful a day so they've put her back on a drip and they can't see it being removed in the foreseeable future. Antibiotics for a bladder infection have picked her up a bit but she sleeps a lot of the time & when awake seems very depressed. She also has a very spiteful tongue & accuses us of dumping her because we want to do away with her (her words). She doesn't believe she is in hospital. She thinks shes in a home, bless. We promised her we would never put her in a home. Poor mum. She has also said that all the time she is there she won't eat. She seems more "with it" than she's been for a while, I'm not sure if that's her condition (AD) or not. Sis & I ignore her spitefullness but it does hurt. She talks about going shopping with us & having a coffee. I'm not sure if that's ever going to be possible now, but we make plans nevertheless. It just breaks my heart. The Dr has told her she is terminally ill but she doesn't retain it (a blessing I guess) so we talk about her getting better & coming home. We talk 'in code' now with the Dr who is very caring. I pray for mum's sake that her torment doesn't go on for too long. Although I've asked what to expect with her Cancer invasion, I've no idea how it will progress or present itself. I just don't want her to be in any pain.
Speak again soon, Lyn
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
Dear Lyn, totally agree with you, felt the same, just don't want them to be in pain and suffer. Sounds like things are being sorted to give your Mum the care she will need though which is good, even if it does mean that the illness is terminal, this sadly, we cannot change. With good care, and you making sure everything is done and pain always controlled, she should be able to be free from any suffering in the days to come. This will be a very hard emotional time for you, but when you look back, having seen it through to the end, you will know in your heart that she had everything you could give her and love around her. God bless, lotsaluv and a hug, She. XX