Scared...

My Dad as some of you may know is in a nursing home & in the past month he has had two chest infections. This time last year was when the back to back infections started. On average he had one every 5/6 weeks. Im scared it's all starting again. Each time he 'recovers' there's a bit of him that he leaves behind, never really getting back to the man he was. I was warned of this, each one that he survives will have a lasting impact on him. I'm scared. I'm losing my Dad bit by bit.

It also takes longer for him to respond to questions & suggestions (if he responds at all), he's much, much slower. That scares me. He nearly died back in October, I remember thinking 'at least he won't get really bad if he goes now'. He's getting bad now & I'm starting to wish he'd gone then. To save him from any more of this. There's no answers out there I know, but boy does it help to write it down & tell you.

Thanks for listening. X

[doglington]

What are your dad's feelings about this ? Did you discuss how he wanted things to be ?

My husband and I discussed this early on so I knew that the quality of life was what mattered to him. He did not want continual treatment. Its difficult if you don't know his ideas. We reached a stage when we knew his quality of life was very little. But it was his decision.

I'm not meaning this critically. Its difficult if you don't know his views.

As a family we were all united in not wanting more treatment. It seemed normal to me but the doctor said its very unusual for people to be clear about this.

You have been so committed to your dad I know.

Big hug from Jean xx

[Hidden in reply to doglington]

Well he has a DNR & a 'no admission to hospital for treatment' decision but he's always accepted antibiotics for chest infections so that's the way it is. I could ask him again if he wants A.B's next time, that's a tough one isn't it?

[doglington in reply to Hidden]

Its really tough. I was cautious about how I asked as I was afraid of him feeling he must do what he felt I wanted. Its a minefield. You want to be caring and sensitive. No-one wants unnecessary pain.

He was able to indicate " no more "

I feel for you.

love from Jean x

[margh2468 in reply to Hidden]

My hubby seems to be at the same stage as your dear Dad, he has said no admission to hospital for treatment also has said no antibiotics for continual chest infections, however, today when I asked him re the antibiotics, he said yes he wanted them, to me it is only prolonging the inevitable, but it is his choice, the Dr said he was pleased that he chose no hospital admission as that is what he would have advised, however, he would have admitted him if that was what he wanted

[easterncedar]

It is all very hard, and very scary. I do feel for you. Hang on. Love and peace, Ec

[Heady]

You are right, there are no answers. Just lots of peope here, feeling your pain and understand exactly how you feel. That what this site is for, expressing a feeling, knowing we all understand.

Sending big hug and much love

Lots of love

Anne

[Nanny857 in reply to Heady]

Anne, you say it so well. xx

[JMDean]

I'm sorry to hear about this. Those kinds of infections take a lot of energy out of people with the coughing and clearing, not to mention dealing with the underlying infection itself. How's your father worked with a speech therapist on swallowing? It's a pretty common issue in PSP and although it's unlikely to be completely corrected, there may be some things that can be done with the where the food is prepared and presented and how careful he is being positioned during the meal times and even providing oral care after meals. . Again, my first sentiment is I'm sorry you're dealing with one of the scarier issues that comes along with PSP so I don't need to get into "Medical mode" but I did want to put it on your radar in case you haven't pursued that already (or even just pursued it recently as things can change over time). Good luck and I hope your father gets some relief.

[Hidden in reply to JMDean]

Thankyou & yes we've done all that. He's on a softer food diet and sits well, he misses his normal food & complains that it has no texture or definition so I know he won't want it any softer/pureed & that's what the salt team would suggest. He's refused a peg hence his aspiration risk.

It's a no-win situation isn't it. Thanks again. X

[margh2468 in reply to Hidden]

Me again, Leon chose to have a PEG last July 4th, he had it 4 days and got chronic diarrohea, ended up in hospital for 3 weeks, ended up with pneumonia, etc, but the feed has been sorted however he is asking for 1/2 feeds now, it worries me, as he will have absolutely no resistance, he has dropped from 92 kgs, to below 60 now

[Hidden in reply to margh2468]

Oh dear... too sad for words. My dad says he dosent eat his meals but I'm told he has soup if nothing else. I know he misses the food I used to cook for him. I feel so sad for him as food is his last pleasure, when I bake I can no longer take a slice of cake for him. That's why he chose not to have a PEG.

[laila123]

i asked my husband what he wanted he said he wants to goand i let him it is so hard for them to suffer this great illnes my prayers with you

[Katiebow]

If only there was a simple answer to all of the issues that PSP raises. Ben hasn't had a full blown chest infection but many UTI's he has a DNR and no admission to hospital but I take such great care in feeding and watering (getting him to drink enough is difficult) he doesn't want to be here but I can't stop trying to keep him nourished and hydrated although I know this keeps him well. (Well as he can be!) Proffessor Leigh commented that the more you care for them the longer they live and I know it's true. He has been given various high calorie protein powders and pots and they are vile. I've chosen not to give them because he hates them and now he only has the food he enjoys. He also should have fully puréed food but sometimes I chop if with a hand chopper as small as I can, provided there is lots a thick sauce he can manage things with pasta, noodles or sticky rice that has a little texture. I know it's a risk but if he enjoys it that's fine with me. He does have choking fits but he has those with either puréed or finely chopped. It's a nightmare to have to makethese kind of choices. I just know that I don't want him to have to prolong his existence, trapped in his own body with very little pleasure in his life. I hope that you are able to come to some decision over this terrible dilemma.

Sending much love

Kate

[Hidden in reply to Katiebow]

Thanks for this. When I was my Dad's carer I did the same with his food even though we knew he should be on nearly pureed foods but because on paper he's supposed to be on pureed foods, the staff at the home have to follow this. Never easy.

Thanks again, Kate xx

[doglington in reply to Katiebow]

Thats how I was with Chris.

Then it suddenly became clear that the quality of life was about nil when he no longer enjoyed food, could hear, speak or see very little, was unable to even turn over. It was difficult to do but he made it clear it was what he wanted.

Lots of love, Jean xx

[Katiebow in reply to doglington]

I feel that connection with Ben, I sense when h wants of doesn't want things even if he can't express it, I hope I'm getting it right!

Lots of love

Kate xxx

[doglington in reply to Katiebow]

I'm sure you are, Kate.

Our GP was quite overwhelmed feeling the connection. He was sure Chris did well for so long because of it.

Believe in it, Kate

love, Jean xxxx

[Heady in reply to Katiebow]

Steve was on a fully pureed food diet. But at the end the only thing he could eat was Muller Rice Puddings and Cheese and Onion Crisps. Of course I knew giving him crisps was dangerous, but I knew if he was going to lose his life to any sort of food, he would have chosen his crisps! They rated over and above white wine, which he had given up. Everything in life, we have choices, unfortunately as carers we get put in the situation of making our loved ones, for them. We can only pray, with knowledge and understanding, that we make the right ones. I am pretty sure I did and I am sure you know as well Kate.

Sending big hug and much love

Lots of love

Anne

[Katiebow in reply to Heady]

When I let him have this highly chopped food I think please don't choke on this, I don't want to be held responsible for any terrible consequences. On the other hand I think at least he was enjoying something in this life of very few pleasures.

Love Kate xxx

[doglington in reply to Katiebow]

I remember that dilemma - thinking that if I keep him absolutely safe he would have no quality of life. The responsibility of caring is so stressful.

Big hug, Kate from Jean x

[Katiebow in reply to doglington]

Certainly is Jean, sometimes you just have to go with your heart. xxx

[Kevin_1]

Hi LookingAfterDad

There's nothing I can add to the other replies excepting that we too will face that inevitable letting go and I know it will be heart wrenching.

Yes, writing here is a great solace for me, even when there are no easy answers.

My heart goes out to you both.

Warmly

Kevin

[raincitygirl]

So gruelling...so hard...so exhausting... At least for a few final months, weeks, or days you have him alive to feel your hugs. When it is all over, you will appreciate even this minimal bit of life between the two of you. God bless.

Anne G.

[setauket]

Try to get your father into hospice. They will focus on keeping him comfortable. You will need support during the end stages of this disease. Also remember a patient can exit hospice at any time.