Hello Henny80

I'm sorry to hear about your Stepdad's diagnosis. It sounds like you've done an amazing job caring for him to this point and it's understandable that as his condition deteriorates that you're feeling overwhelmed by everything. 

It's good to hear that you have input from the district nurses and Macmillan. I'm unsure from your post if you've actually told them how much you're struggling with things. Sometimes a straight out conversation is needed for people to see the whole picture. Do explain the impact that caring for your Stepdad is having on the whole family and how you are struggling to continue juggling everything after 8 months. There should be some assistance available to you although with the current Covid19 situation it may be reduced. 

If you'd like to chat to one of our nurses for some advice you're welcome to call them. They're available on 0808 800 4040, 9am to 5pm. They will be in the office tomorrow, Wednesday 23rd and then back again after the festive period on Tuesday 29th. 

I do hope that you're able to arrange some support. 

Best wishes, 
Jenn
Cancer Chat moderator 

Thanks Jenn, we're still having some trouble, stepdad is now incontinent and the hospital want to release him home with no care in place! It's absolutely ridiculous. 
 

I just feel so sorry for my stepdad, I don't want him to feel like we don't want him here (we really do!!) but I'm at the limit! 
 

Luckily we have a great District Nurse who is keeping me sane and is doing everything she can as well to make sure he gets all the care he needs and deserves instead of me just trying to balance everything. 
 

We'll see what happens over the next few days, hoping and wishing he somehow recovers for a while longer xxx

Thanks Jolamine,

Firstly wow, your dad...what a man! To do that shows how much your parents loved each other. I'm glad that they got the help in the end, it sounds like it made life a lot easier for them...and hopefully gave them time to make more memories together.

We have sort of had the matter taken out of our hands, the hospital are now involved (his constipation got so bad he was taken in). We were advised by our District Nurse to be firm and say we cannot cope with the additional needs that are now there as well as him being bed-bound. So when we said this the complex discharge team became involved. They have been great so far, they discussed our situation with us. In honesty he needs round the clock care at this point, he's not mobile and he's very very poorly as well as double incontinent (they have said a matter of weeks, but they think 4-6 meaning he's too "well" for hospice, but too ill to be effectively cared for here without our kids seeing pretty much everything we don't want them to). 
 

They are going to give us some options, but they have suggested a nursing home. At first I was very resistant to that, but they suggested I look into it more, and I am coming round to the idea a little. Like your mum and dad, I want to be able to spend quality time with my dad (and, in honesty, with my kids and husband too). This virus is wreaking havoc though as it will be harder to see him in any other setting. 
 

Really appreciate your reply and I will also contact our GP to discuss with them...they haven't really been involved so far.

Hope you had a lovely Christmas xxx

Dawn xx

Hi Dawn,

They were a truly devoted couple, who had been married for 80 years. He was 'a one off' - great with family, both young and old and a man who could turn his hand to anything. Sadly, he only lasted 3 months after Mum. He had been complaining of back pain and his GP kept telling him that it was arthritis. Eventually, one of the GPs in the practice referred him to the Day Hospital for assessment. He went in late in the morning and we were told just after lunchtime that he had cancer and, that it was rife throughout his body.  He was given a prognosis of weeks, but only lasted for 5 days after that.

Although things have been taken out of your hands for all the wrong reasons, it is good to hear that something is being done to help you. We still have a relative in a nursing home, but haven't been able to see him indoors since last March. Now that the weather is too cold for garden visits, we can only have window visits. These are difficult as our relative has speech impediments and we are hard of hearing. The other problem is that we are only allowed one visit per week, which has to be arranged by appointment. When we tried to book one for last week we were told that all visiting slots were taken and we couldn't see him before Christmas. We have had to wait until tomorrow to see him. As we are the only people he has in the world, I felt very annoyed about this.

Fortunately, our relative is not at the end of his life, so we are still hopeful that we will see this situation improve. Many of the residents with dementia, however, believe that they have been abandoned by family and friends. If your Dad is going into a home make sure that there is provision for you to visit him on the grounds of his personal state of health. It would be heart-breaking not to be able to be with him at the end, after looking after him so well up to now - this has happened to many people this year.

I don't mean to add more oil onto troubled waters - just wanted you to be aware that this can happen before you commit yourselves. Have a word with the GP first and see if he can offer any other options.

Please keep in touch and let us know what you decide.

Kindest regards,

Jolamine xx