Feeling lost

[DPurple]

Hi, I'm new. I have been supporting my Dad for 7 years since my mum passed away.
My dad is complicated as he has various health issues, (Including Diabetes) which have meant he does not have a formal diagnosis.
He has been in and out of hospital and close to death 3 times in the last 4 years. However, following hospital stay last June, Social services placed him in a care home. Lots of assessments. The care home have tried 4 times to have his capacity checked, but he point bank refuses to speak to mind clinic and has enough capacity to know / remember enough, to answer the familiar few questions. And sometimes he does seem to understand and it's like having Dad back. But it's up and down.
The care home are great. He is now safer than he was at home. He has 24hr nurse care.
However, he is now classed as pallative due to heart failure, kidney failure and liver failure. And his refusal to have any further bloodtests or treatment. (This is partially his understanding/processing, but also grief as he just wants to die and be with my mum.)
The care home are meeting his needs and he has been stable for a year.

I know we are so much more fortunate with how my father is affected compared to many others and each story is so different.
But, I feel I'm running out of ways to support or help him. Every appointment/ medical professional takes him at face value. Having to explain his needs over and over, to enable THEM to be safe in treating him as well as him being safe recieving treatment is exhausting. They are responding better slowly but he can be quiet believable initially. And they don't always have the time to wait for him to process.
It's like everyone exknowledges he has dementia, but there is no formal diagnosis, so no support.

I've found info and supported him as best I can. Due to the care needs of my children, I couldn't support him full time

We are now in another hospital situation where he has a bone infection and another active infection , which they are finding hard to locate. They started iv antibiotics and fluids and seemed great with him regards his dementia.
But of course, symptoms could be worse due to infection reaction.

Then several patients were suddenly moved from the ward at 3am and he freaked out. Ripped out his cannula, tore off his hospital bracelet and is now refusing all treatment.
I've calmed him down again, but he will not let them touch him.
So he is high risk of sepsis taking hold.
They are discussing what they want to do.
(Treat/ Not treat) and if sending home again, putting end of lifecare plan in place.
I constantly feel I'm failing him.
He just wants to pass in the care home.

Both LPA was applied for a year ago. LPA P&F came back at the 28 week mark. But LPA H&W went missing, we recieved someone else's, it then got returned due to an error from a witness and had to be redone and sent off again. So we are waiting for it again.

I know there's not really an answer. Think I just needed to vent.
Thank you for listening. Best wishes to all.

 

[Gosling]

Hello @DPurple and welcome to this forum. You will find us very friendly and supportive, and there is a wealth of first hand experience of the various aspects of dementia here.
I am sorry to read about all the difficulties you have been facing with your Dad over the last seven years. It must be so difficult for you, with all the various challenges that have been thrown at you. I am glad you've had a vent, this forum is very good for that!
But please do consider all you have done to support and care for your Dad over the years, with trying to find him the most appropriate care to meet his needs as they have changed. You are absolutely doing your best.

It's even more difficult when there is no formal diagnosis of dementia, but you really have been trying your best with all the health conditions he does have. It does sound now that he is in a poorly state, I would certainly suggest that an end of life plan should be put in place. It's always difficult but in this way you will ensure that he doesn't get any medical interventions that he doesn't want, and it will hopefully make you feel that you are continuing to care and support him at this stage too.

Do keep posting on here... and let us know please how things progress. Take care, and wishing you continued strength.

 

[SherwoodSue]

It must be frustrating for you not to have a diagnosis. I am also wondering really what would be different for you dad if there was a formal diagnosis in place and if everyone agreed your dad lacked capacity? Yes, the medics would be more likely to talk to you rather than ‘take your dad at face value’
He has multi organ failure and an infection which as you say could easily become overwhelming sepsis.
I think you should prepare yourself that dad may get his dearest wish to join your mum.
Did your dad ever complete a RESPECT form in earlier time. Would you or he want CPR if his heart stopped? Are the medics aware of your wishes? It sounds like your dad has hospital acquired delirium. I hope you get him back to the care home where he was settled. This is a difficult time. Thinking of you.

 

[Palerider]

Hi, I'm new. I have been supporting my Dad for 7 years since my mum passed away.
My dad is complicated as he has various health issues, (Including Diabetes) which have meant he does not have a formal diagnosis.
He has been in and out of hospital and close to death 3 times in the last 4 years. However, following hospital stay last June, Social services placed him in a care home. Lots of assessments. The care home have tried 4 times to have his capacity checked, but he point bank refuses to speak to mind clinic and has enough capacity to know / remember enough, to answer the familiar few questions. And sometimes he does seem to understand and it's like having Dad back. But it's up and down.
The care home are great. He is now safer than he was at home. He has 24hr nurse care.
However, he is now classed as pallative due to heart failure, kidney failure and liver failure. And his refusal to have any further bloodtests or treatment. (This is partially his understanding/processing, but also grief as he just wants to die and be with my mum.)
The care home are meeting his needs and he has been stable for a year.

I know we are so much more fortunate with how my father is affected compared to many others and each story is so different.
But, I feel I'm running out of ways to support or help him. Every appointment/ medical professional takes him at face value. Having to explain his needs over and over, to enable THEM to be safe in treating him as well as him being safe recieving treatment is exhausting. They are responding better slowly but he can be quiet believable initially. And they don't always have the time to wait for him to process.
It's like everyone exknowledges he has dementia, but there is no formal diagnosis, so no support.

I've found info and supported him as best I can. Due to the care needs of my children, I couldn't support him full time

We are now in another hospital situation where he has a bone infection and another active infection , which they are finding hard to locate. They started iv antibiotics and fluids and seemed great with him regards his dementia.
But of course, symptoms could be worse due to infection reaction.

Then several patients were suddenly moved from the ward at 3am and he freaked out. Ripped out his cannula, tore off his hospital bracelet and is now refusing all treatment.
I've calmed him down again, but he will not let them touch him.
So he is high risk of sepsis taking hold.
They are discussing what they want to do.
(Treat/ Not treat) and if sending home again, putting end of lifecare plan in place.
I constantly feel I'm failing him.
He just wants to pass in the care home.

Both LPA was applied for a year ago. LPA P&F came back at the 28 week mark. But LPA H&W went missing, we recieved someone else's, it then got returned due to an error from a witness and had to be redone and sent off again. So we are waiting for it again.

I know there's not really an answer. Think I just needed to vent.
Thank you for listening. Best wishes to all.

I find the whole dementia thing quite strange, I live with it and have cared for my mum with dementia, but I also work in healthcare and I find my colleagues difficult when it comes to dementia -they are quite dismissive once someone is labelled with dementia and I find them asking me about my mum quite pointless because they just don't get it. Some of us do live in both camps, it's just pot luck in who sees you and your dad sadly.

In the end I found the best way was to just go with my mum at the time. We did attend hospital a number of times, but it proved fruitless in the end as my mum just couldn't tolerate it and made her more distressed than anything so the decision was made not to go down the road of aggressive treatment and accept this is part and parcel of dealing with a person who has dementia, which in itself has an end stage. There are some things you just can't do even as LPA and that is control someone with dementia, all you can realistically do is weigh up everything and on that basis decide the best approach.

 

[TraceyK]

Hi @DPurple, I'm new too & have found this forum so helpful. My advice would be to ask your dad's GP to do a respect form. It was such a weight off my mind when mum had one, her GP has also arranged for 'gold standard' palliative care in the community. What this means in effect is that in the event of an illness with 'reversible causes' such as a chest infection, she would receive treatment such as antibiotics at home but if she deteriorated further then she would receive palliative drugs to keep her comfortable at home & ease her passing, rather than be taken into hospital to die in a strange distressing place. No resuscitation, at any stage. It sounds as if this would be what your dad may want, & that he has the capacity to understand & agree to this.