Carers only

Looking after a loved one with cancer? This is a safe and supportive place to share your worries and emotions. Please remember when posting that this group is for Carers only.

Terminal cancer with Vascular dementia

Sheel
Posted by

My husband who is 84 has just been diagnosed with lung and abdominal cancer. He does not have capacity and I as his wife have LPA. The family have decided along with advice from Drs that we do not treat.  It is heartbreaking as he is completely unaware and happy in his world.  It is up to us now to look after him.  So unprepared for this.

Smiling though my heart is breaking 
Needing friends
Posted by

Hello, Sheel, sorry to hear this. We are with you as best we can be. I hope that you are getting all the support you need. Lots of love, pam xx

Sheel
Posted by

Hello Pam, Thank you for your reply. We are coping ok as it is early days and family are not close by. They are all informed and as yet support has been by text.  One of my stepsons (there are 4) has just yesterday said he will come and stay for a couple of days to be with his dad and give me a hand if I need it.  It makes a big difference when anyone is willing to do something, anything instead of what can be sometimes a hollow offer of help with no intention of following up.  The dementia is hard enough to deal with, I have no idea how I will manage when the cancer has more impact on his health.  We are just sticking to our routine which he is happy with and of course I am spoiling him with different outings and favourite meals etc. Hugs Sheel x

Smiling though my heart is breaking 
Needing friends
Posted by

Hi Sheel, glad you have an offer of help, but as you say, things may become more difficult. Perhaps it may be a good idea to ask the GP to put you in contact with or refer you for some help. It may be better to try and get things in place now or at least know what is available in your area. Hope I don't sound like I'm preaching but I  was so relieved my partners GP referred him to the palliative care nurse last week. He has been deteriorating steadily and with oncologist meetings only every 3 months, trying to get hold of GPS, who have been good, and the never ending waiting for scans and results it's been exhausting mentally. Sorry to beat about the Bush, but the palliative care nurse was great, she left me her card, had some new suggestions and they even work weekends. Mcmillan are great for support, I hope you can make sure you look after yourself as well. Hope I am not speaking out of turn, I mean we'll., hugs, Pam x

The BODACH
Posted by

Hi 

Hi Sheel

Before I start my response properly can I take this opportunity to welcome you to the club that no one really wants to join but our circumstances bring us here for help and support whilst we are sorry that your journey has brought you to our door we are so glad that you felt you could reach out to us at this time, I think as you've already found we are a really friendly bunch who are very supportive towards each and try and give help and advice based on our own experiences.

You have hit the nail on the head, life does not prepare us for this, there is not a rule book to follow and we end up going round in circles until we tie ourselves up in knots

I've come into this conversation to ask you two questions

  • Have you had a needs assessment

and 

  • Have you had a carers assessment 

These are carried out freely by your local  County council and will examine every aspect of your life to establish the care that both you and husband needs and would like to suggest that you read this information leaflet Understanding care Assessments

 And find out just what you are entitled to, such as do you get Attendance Allowance this is not charity it's not means tested it's a payment to ensure that you husband has the care he needs and depending on the level of care can be one of two levels.

Do you need any special equipment to help you care for your husband and much more and it costs you nothing you nothing except the cost of the initial phone call

Being a carer is not an easy role to fulfill and can be a tremendous strain on the partner doing the caring and as you've probably found out it's tiring its exhausting and you have very little time for yourself.

Some of charities such as AgeUK have volunteers who maybe able to sit with your husband whilst you have some ME time just on your own even to sit in another room with a coffee and a book for an hour, or even let you go to the shops or a doctors appointment without worrying how you husband is.

There is help available to you all we've got to do is find the right level for you and Macmillans and AgeUK are two organisations who can help you source the help and support you need on a daily basis

Please do look at the Needs and Carers assessments as soon as possible which unfortunately will be Tuesday now and start the ball rolling. If  your husband is not at present getting attendance allowance I would suggest you phone them on Tuesday and any benefit paid will start from the date of the phone call, really you have nothing to lose but a lot to gain.

If you need any information let me know if you need them I will send you over the phone numbers and if need be if you let me know your county council I will send you over a link for the Adult Social Care team.

Please keep in touch with me.

Ian

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Sheel
Posted by

Hello Ian, Thank you for your reply with so much information.  My husband has had Attendance Allowance at the lower rate for a few months because of his dementia.  Recently my husband had a CT scan when the cancer in his lung and abdomen were discovered.  

At a recent Dr review appointment I was asked about putting a DNR (Respect) in place which has now been sorted.  Also the Dr has sent (and given me a copy to post also) of form DS1500 which is issued when a patient has a terminal diagnosis expected to be 6 months or less as I understand it.  Huge surprise for me but I would rather know and be prepared.  I gather this form is received by the dept dealing with Attendance Allowance and will fast track my husband to receive the higher rate.  

I have also been given a booklet and advised to get in touch with our local council regarding a Needs and Carers Assessment, I will ring them tomorrow.  Any help would be great.  I am finding it very stressful dealing with all the dementia problems and now highly anxious over what is in store when the cancer starts to affect him more and more. He has a strong painkiller prescribed for when he needs them and I have been told that more efficient meds will be available as and when.  

Thank you again and I will let you know how the assessment works out if I/we qualify.

Sheel

Smiling though my heart is breaking 
Sheel
Posted by

Hello Pam, thank you for your advice. I have responded to Ian’s reply below with details of where we are at and I will look for more help as I think I will be needing it sooner rather than later.

Our GP has mentioned needing palliative care at some point but nothing in place at the moment.  I am sorry your partner is deteriorating steadily.  When we made the decision to not investigate or treat, we didn’t need to meet with the Oncologist so have no idea of course of what stage my husband is at.  I am as you suggested trying to put things in place with the help of our GP who has been wonderful.

Of course you are not speaking out of turn, it is welcome advice as I don’t know where to turn at the moment, I would rather have as much information as I can get.

My husband is fine to leave for a few hours so long as I put everything in place, leave a note, lunch in the fridge, Coffee in a cup as quantities seem alien to him of anything these days.  A whole tube of toothpaste one morning, not sure if he ate it or cleaned the sink with it, he thinks his teeth are plastic (they are not) so no need to clean them.  Oh I could rant on about the weird world of dementia but I am lucky he is loving and caring and not at all aggressive which is a blessing.  I will try and keep up my once a week meet up with a friend who’s husband has Alzheimer’s,  we can have proper long lasting conversations, a few giggles at our partners latest antics and a tear or two when things are going downhill yet again. Hugs, Sheel xx

Smiling though my heart is breaking