This is what my 4-year old daughter told me today about my father-in-law with CBD who lives with us. I’m worry that on the effort to help him we’re affecting her 
I wonder if anybody else have a similar situation. We’re struggling to define the time to decide for a caring home for him instead of family life.
I'm afraid that's a question only you can answer, everyone is different, everyone's situation is different. My Mum stayed at home until the end. It was what she wanted and with plenty of support from carers it was possible. Do you have carers to support you? One thing to consider is when carers visit you at home they spend all their time with the person they are caring for, so they get much more one to one attention than if in a home.
Thanks for the answer and the insight of the on-to-one attention.We have carers on weekdays for 45’ in the morning to help him in the mornings.
During the day he doses a lot in the sofa, so we have doubts of hiring someone full time because of that.
Perhaps we could increase to have some help at night too before going yo the big change if a care home.
We gradually increased Mum's visits to cover morning, lunch time, dinner/tea time and bed time and I would spend the afternoons with her. She lived in sheltered housing in her own apartment with a falls alarm. There are different types of alarms & pressure mats that you can get - ask for an OT assessment, they can be set so they would tell you if he got out of bed, or if he got out of bed & didn't get back in within a certain length of time, etc etc.
Mum wasn't incontinent but like your father-in-law would fall if she got up to go to the bathroom, so she compromised and wore pads - it didn't always work, sometimes she would get up because she thought at that moment in time she could walk to the toilet herself but generally & especially as her mobility decreased and she had rails fitted to the bed, she stayed put.
Thanks! Very insightful
Hi. I endorse all that AJK says. My husband stayed at home with carers coming in but it has to be your decision. Certainly if you do not have carers helping you then your family life will be affected. What your daughter says is just how a child sees it and accepts it. My grand daughter adored her Grandad even when he could communicate with her less and she always brought a smile to his face. She would pull up his commode and sit on it next to his chair and natter away to him. It was precious. On a funny note when I got offered a 16 year old Staffie to foster, as her master had died, my daughter said 'Can you really manage a 16 year old, incontinent pup?' Without a hesitation my grand daughter replied 'Well Grandpa was incontinent and she manged that and still loved him' ! 🤣
I wonder if the carers that you had were full time or there were specific times.Reading you I’m considering to increase carers tule to the night, to help him to get ready to bed… perhaps that will alíame that.
My father-in-law is not incontinent yet but he is falling during the night when he tries to go to the bathroom and it is very stressful as he doesn’t call us to help him
Perhaps we need to consider night nappies and some way to convince him that he doesn’t need to leave the bed until being assisted.
Is it common that they get very stubborn or stick with a thought without a logic way of thinking around? We’re struggling with his non-selfsafe decisions he makes
At least in our case, it is common that the person gets very stubborn and illogical. I struggle with it every day and my wife's stubborness got her into the emergency room last week. Tough disease.
OOOUUCCH that’s a high level of stubbornness that I hope we won’t reach!
Hi. We started off with just carers morning, then added some sits so I could get out, and then we added evenings. I did consider a full time carer but then he was my husband not my parent or parent in law and we could still spend some quality time together which we could enjoy even if we were not doing a lot. Sometimes when he was being very stubborn for me he would be as sweet as pie with the carers, which could get under my skin, but which was good for him and meant that his co-operation was useful for them. From what I understand about progressive neurological conditions it is the fact that making 'new' memories becomes harder and harder so it is not really being stubborn but that they remember what they could do, not what they can no longer do. Understanding that made it easier for me to cope with things instead of thinking that he was just being bloody minded and not listening to my 'logical' suggestions. You could certainly try pads [suggestion don't call them nappies in front of him] but he may not be able take on board that he does not have to get out of bed. Hope this helps. Love to you and your family AliBee x
EXTREMELY useful insight!! It really makes sense for so many things we’re going through!Thank you ever so much for sharing!
I have a daughter who is 14 watch me take care of a loved one. So her level of understanding why I'm taking care of my loved one is still hard as she needs her mommy too. And this disease takes away so much time as far as our family time. My loved ones wishes are to stay home to the end. Finding the balance between taking care of my loved one, family time and owing a cleaning business is very complicated. So we did get more help yo free up some of my time definitely helped. And you would want to see how much it cost staying home with help vs a home. Compassion is what the world needs more of so that's the bigger picture I am teaching my daughter through this journey. But you will know what best fits your situation. This disease is the worst I've ever seen...best wishes to you and your family.
Thank you ever so much for sharing your story.Yes, it is very draining for us all… and we’re very sorry for him to be in this situation, he feels embarrassed about himself a lot
That is so insightful of your very young daughter to recognize the challenge that your family is facing and that people are worth it. Having our children see us deal with situations that are hard, that require dedication, sustained effort, and sacrifice, in order to live out our values and priorities, is setting a good example for them.
Whether to keep a loved one at home or elsewhere is something many of us are continuously reassessing, balancing all sorts of factors. We might have an idea of what we think we can deal with, a time limit, etc, but that threshold changes all the time.
It’s a challenging one to know or decide. In our home, my children (late teens) have learned patience and compassion in seeing how their grandad is loved and respected through his care. It’s not been easy. Dad wanted to be at home so we provide all the care for him at home too. My children are part of that care, as it does become unavoidable for them to help out in providing care support. We don’t leave Dad on his own at all, so occasionally they have grandad-sat him!
Thanks for sharing ❤️
This is not really a question but an observation which I think illustrates quite clearly the fallibility of our caring sharing "care 
Hello everyone, i I wonder if any of you can recommend a care home for my husband ?
Chc when is the right time to apply?
The 'legal limit' of Social Care - A letter to Social Services.
One daughter is in Scotland for the semester. My other daughter is taking a trip to California in March. I'm stuck at home with PSP...grrrr.
