I'm new to the forum

Hi I’m Gill and I’m new to the forum. I have been caring for my husband for almost 5 years since he was knocked down by a car. He had previously had a couple of strokes and bowel cancer and was an acholic. However he was still able to get around but since the accident he has suffered with bad he seizures and dementia. Two months ago he was admitted to a nursing home as the neurologist had recommended that he needed 24 hour care with 2 carers to support him moving. He is now unable to feed himself and mostly refusing food and drink together with his medication. I visit him nearly every day, sometimes he knows I’m there but often there is seizure activity and then he will sleep for long periods.
Its not too bad for me but for my two adult children it is sooo hard.

Hi Gill,

I’m really sorry to hear of your situation.
Holiday times like this, traditionally when families have get togethers, it seems so much harder. (I’m widowed).

Is funding for the nursing home all sorted out?

Can I ask how old you, your husband, and children are?
What aspect of dad’s situation do your children find most difficult?
Are they aware that dad is going down a slippery slope towards dying?

I would strongly recommend Googling “Signs of Dying”, because you will find lots of information written by people from the hospice movement. These explain why a patient doesn’t want to eat or drink. They will not die because they have not eaten or drunk enough, they CANNOT eat or drink much because the body is very ill, and the body organs know how much they can, or cannot, cope with.

Are you prepared for your own future?
When did you last get away for a few days?

Hello Gill and welcome,
It’s a very hard time, when you realise someone you are close to probably has not much longer to live. I have dealt with the death of both my parents and remembering the stress and panic about making decisions in the aftermath of my Dad’s death, and, not being able to do any more for my Mum than I was already doing, visiting etc, I decided that what I could do for her was to plan ahead. I contacted a ‘funeral directors’, gave them her details and her location, planned her favourite hymns and poems etc for her funeral (on paper) and chose clothes for her last journey. Even planned what small things could go into her casket.
This meant that when the time came, a phone call produced the funeral people, the interview with the church went smoothly and I was in a much calmer state than if I had had to arrange everything in a hurry while being upset and mourning. I had an extra problem too as she was buried a long journey away from where her funeral service was held. All sorted before hand.
Depending on how old your children are would it help them to help you with such planning? You might feel that it is too upsetting or almost like ‘wishing him gone’ to plan like this but believe me it does really help when the time comes. It’s not disrespectful to think through what he would want to make sure you get it right.
Wishing you comfort in this hard time.

I agree completely with Elaine, the more you do now the easier it will be, once you accept the inevitability of the situation. I’ve lost too many people now, all four of our parents, then husband, then brother.

It is much easier planning things in advance than end up with an emergency situation. Father in law refused to give the dementia home his ex directory phone number, refused to consider what funeral director to use, even after mum in law had a stroke and lost consciousness for a week. He gave the home our phone number instead! One day we’d been on a lovely family day out. The answerphone was flashing, usually something to do with our business.
Instead it was the care home. “Your mum has died. What do you want us to do with the body?” Yes, just as blunt as that!!

When my mum, the last of the six, was very ill, I was about to go on holiday, utterly exhausted after emptying her hoarder’s house. The GP ordered me to go whatever happened. I contacted the funeral director we’d used before, and explained the situation.

I also thought about what mum would want her funeral to be like, what music she wanted (I knew already) and who should attend. So much easier.
Death is an inevitable fact of life, as a parent I think we owe it to our children to help them understand that. That people live on in our hearts, we will always remember them. My youngest son has severe learning difficulties, so when he asked “Is grandad going to die?” I explained that the doctors were doing everything they could to make him better, but he was old and his body was very tired.

Thanks so much to both of you for your advice. I’m finding it so difficult as his condition seems to vary so much day to day, which makes it impossible for me to accept that he wont be home again. However I do take onboard what you are saying about preparing for the worst. He has lost so much weight ,cannot feed himself and often refuses medication but suddenly he will pick up the jug and drink> Its so confusing! G