Want to end it all

Well I obviously did something wrong as my post did t appear as I wrote it so I will try again

My son 45 had a massive stroke in Dec 2015 he was on life support and we were told he would not survive or would be severely disabled.  Well he did survive although he had right side paralysis, he also had heart disease and a defibrillator inserted.  He spent 8 months in hospital and rehab and eventually went home with a carer for four hours a day.  He has been going along quite well and can get around with a gopher using just his left hand, he has also been able to walk but dragging his right leg.

things took a turn about 4 weeks ago when he started slurring his words took him to hospital but he refused treatment so was sent home, he gradually started to improve and was ok but not back to his normal self.  Then two weeks later he suddenly went downhill again and was unsteady on his feet and very hard to understand as speech was garbled, took to hospital again and he agreed to have tests done ct scan was done and he was admitted.  Week later we found out it wasn’t a stroke but he has Vascular Dementia, Atherosclerosis compounded by the fact he has had strokes on both sides of the brain and it has been a fast decline, he is unable to feed himself is incontinent and unable to walk or stand.  He has said he wants it all to be over and he is a bad person that deserves to die. As a family we are devastated and don’t know where to turn, I have spoken to the hospital social worker because they keep saying he is not even trying to do any physio or speech therapy.  What can I do? I spend at least five hours a day with him seven days a week and have done so for last two years but it’s not enough, I constantly tell him how much I love him, I am so lost I don’t want him to die but I also realise that day is coming but I don’t want him to die before his time.  He has an Advanced Care Directive in place to let him die in peace with his family and no intensive treatment.  Can anyone tell me where do I go from here and how can I help him       thanks Sally

Hi Sally

I’m so sorry your son is so unwell. He has had a very hard road, and I can feel the toll it has taken on him, and on you and your family. I am so sorry.

It is good that you are in contact with the hospital social worker. It sounds like the treating team are fully aware of how he is feeling and I hope they are keeping you informed about his treatment and care.

It would be good to connect with the hospital’s pastoral care worker too. Pastoral care workers provide emotional and spiritual support, and can be a great help as you spend your days with your son in the hospital.

You ask how you can help your son, and the first thing I would say is that your love and support is helping him beyond measure. Sometimes that’s all we can give, and we might not feel like it is enough, but it is.

Your son sounds like he worked hard to recover after his stroke, and it sounds like you were with him every step of the way. I cannot imagine what it is like now to see him in such poor health, and such distress. The only advice I would give you is to make sure that you take time to look after yourself too. As much as you can, try to rest, eat well and to sleep. Make sure to remember how tired you are too – don’t drive if you’re not up to it, and let other obligations slide where you can. If people offer to help, consider taking their help with things like meals, driving and company.

If you would like to talk things through, StrokeLine’s health professionals are here 9am to 5pm Eastern Standard Time Monday to Friday. Call us on 1800 787 653.

The lovely people at Lifeline are available too if you need a listening ear at any time, including in the middle of the night. Lifeline’s number is 13 11 14.

With kind regards, Jude, StrokeLine