the end?

[magenta]

Hi everyone

I have read Mandy's thread and am horrified at what I am now facing.

My husband is in hopspital with aspiration pneumonia following a cold. He had a heart attack last Thursday too. Never thought he would survive another one of those.

He has been lucid all day. Talking a little and listening to all that is around him. After my step daughter left he said to me " I am nearly dead" and later ' I am dying.' He shouts alot and he moves alot on the bed. He just does not seem about to die.

The nearest hospital was closed to admissions the day the GP admitted him so my husband was sent 44 miles from home. He was so ill the first night I slept on the ward floor beside his bed and the next 2 nights I slept in a vacated room in the young doctors housing. I am now travelling daily from home. 88miles.

I just can't believe that Doctors are going to withdraw the glucose and kill him.

Is there nothing else?

 

[sallyc]

Hi Magenta. Have you discussed all the options with the doctors? I wasn't sure, from your post, whether that was what your husbands doctors were saying, or whether it is what you fear will happen from reading Mandy's posts. I'm so sorry you're going through this, especially with the travelling. My thoughts are with you.

 

[BeckyJan]

Hello Magenta:

I also feel you should be asking to see the Consultant dealing with your husband. He sounds to be a different medical case to Mandy's Mum.

Also why not speak to the Hospital Social worker or PALS and see if they can help with regard to your travelling problem. Not sure what they can do but its best to let them know.

 

[Skye]

Magenta, the others are right. Don't panic yet. The consultant will give your husband every chance to recover, and they won't withdraw treatment without talking to you first.

If your husband is as lucid as you say, there's every chance he can fight the pneumonia. If not, they'll talk to you. Do ask, it's always better to know.

Love,

 

[Izzy]

Can't add anything. Just thinking of you. Izzy x

 

[DeborahBlythe]

Magenta, I wonder if it would be feasible to move your husband back to a closer hospital, if it has re-opened to admissions? It must be a terrible strain travelling so many miles to see him.

I agree with previous advice. Tell the hospital about your fears. Also, Jan's advice about help from a PALS officer is good. Wishing you and your husband well. Deborah

 

[magenta]

lost

Hi

Not functioning well this morning. Tears.

I did speak to the consultant on Tuesday, and will see her again today.

It is the consultant who said he will probably not recover. It was nicely put but they would not treat another aspiration pnuemonia if he recovered this time but became ill again soon. They would treat if a reasonable time elapsed.

What I am finding so hard is that my husband is very aware of his situation. He is hungry and able to listen and to want to hear what our children are doing. I took our son back to uni on Wed as he is involved in a reaearch project, My husband is asking about him.

I do understand that if my husband can't eat and he would not withstand the surgery to fit a peg, due to heart problems, that he cannot live without food. He just does not seem ready to stop living. He has Lewy body.

I read the marie curie site about the Liverpool path last night. My husband does make noises(that is new) and he says he does not know why and he is moving alot on the bed, but he has done that always. These things they seem to have picked out as indications of nearing death.

I just cannot see how the medics can leave him to starve. 21st july I called the GP as my husband had caught the cold we all had. Antibiotics just to try to protect him. 3rd august he ate well at home. 4th August I called the GP out as I thought my husband's lower legs were an odd colour (but normal now) and he admitted him as he said he was very ill and not likely to live. Nil by mouth since then. The speech therapist has tried twice with food and says he is at high risk

I want to be wth him all the time but have to acknowledge this is taking a toll on me.

I don't want him to die and be left kniwing he starved to death.
magenta

 

[nicoise]

This is very scary for you - especially the fact that he seemed to be coping so well before the latest infection.

Sometimes it is the case that a very severe downturn happens, and that there is no coming back from it - and if you had no warning of the fact that things can get so bad so quickly it is shocking and difficult to cope with.

All I can suggest is that you do your best to be as involved as you can. I don't believe that they can withdraw all treatment (glucose, fluids) without your agreement. That way at least you will know what is happening and feel that you are controlling something if you feel that he has the possibility of recovering. And being with him, you can continue his personal care - again that helps to know there is no question of neglect.

My father died of pneumonia a few years ago. He was admitted to hospital for antibiotic treatment, but unfortunately he was just too weak to respond. Simply, despite agressive treatment, being able to eat and drink, his body was shutting down. There was no more that could be done for him, however much we wanted it. Ultimately he made his own decision to discontinue treatment. It broke our hearts, but we realised that there was nothing we could have done to change that story. He was given the Liverpool Pathway palliative care - and it was very peaceful and the way he wanted it.

Keep asking questions of the medics - but sometimes they cannot make the miracle happen - but sometimes it does....

Best wishes

 

[BeckyJan]

Hello Magenta:
I can understand your tears and dreadful fears. Sadly a few of TP members have witnessed aspiration pneumonia and the problems for treatment.

My husband chokes over food so I know I could be following the same sort of journey.

I wish I could find words of comfort. I do urge you to speak to the SW within the hospital. He/she may be able to offer some support; alternatively could you discuss your fears with your own GP. For different reasons I spoke to my husband's GP this week to clear my head over an issue and he certainly helped me.

 

[Skye]

Dear Magenta

Just sending you a big hug. This must be so hard for you.

My John hadn't spoken beyond yes and no for two years, was immobile and slept most of the time, but it was still a shock, because he was only beginning to have swallowing difficulties, and was still eating normal food. He didn't understand what was happening to him, and the distress in his eyes was hard to bear.

But Magenta, if it should come to that, don't think of it as starving to death. The bodily functions would be shutting down, and would not be able to process food. Certainly your husband would not feel starving, his body knows what it needs, and just now that is not food. What he needs is you to be there for him, giving him all the comfort you possibly can. I know you're doing that already. This is much harder for you than it is for him.

I can tell you desperately want your husband to recover, and that's natural. Even on his last day, I was willing John to take one more breath. But perhaps he's just had enough? I don't know, but I'm thinking of you.

Love,

 

[Tarika]

Dear Magenta,
My mum was in hospital with aspiration pneumonia and I faced the same questions you are now asking. My fear was that they would not see her as having any hope of recovery.
The consultant was very honest and did not think she could survive. She had a second bout of pneumonia and another stroke.

However, they did not withdraw any treatment and kept trying to improve her outlook. She was on a drip with glucose for four weeks and during most of that time she was awake and recognised us.
Sadly she passed away a fortnight ago but I was very grateful to the consultant for his honesty. I think that if they were to consider withdrawing medication they would have to have your consent and you are entitled to say no to that. It's so heartbreaking and I was very clear that I could not take that decision as mum was such a fighter.
As it turned out I didn't have to but I would still have refused to have everything withdrawn.

My thoughts are with you.

Love Tarika

 

[florence43]

Dear Magenta,

What a sad situation, and I'm so sorry you're having to travel so far to be with your husband. That must add to the exhaustion and strain.

I simply wanted to say I'm thinking of you and willing you some strength. Tackle the situation head on and say to the consultant everything you've told us, in the same words, and I'm sure you will be reassured.

I really wish that for you. Sounds like your hubby's a fighter.

Do take care,

love,

 

[magenta]

waiting

Hi

I have seen the consultant this morning. They are going to try feeding again this morning. The consultant was thinking of another aspiration event soon but we have challenged this by saying how lucid he is and that he is joining in conversations. The consultant then said she would see about trying tube feeding. I said I wanted him to be at home and then the consultant lightened up and said that could be started.

I am going to phone my husbands CPN as I think she will organise stuff to the house faster.

I just hope as I really don't think he is at the end. He really looks tooo well. He is off oxygen and breathing well by himself this morning.

Thank you all for the care and thoughts you give such a marvellous support.

I know he cannot have long to live.

Magenta

 

[BeckyJan]

Thanks for letting us know.

I do hope you get your husband home with lots of support. You have done well to be persistent at such a distressing time.

Its lovely that your husband is lucid and join in conversations.

Thoughts are with you.

 

[florence43]

Hi Magenta,

That sounds more positive. You sound more positive. I hope you and your husband get your wishes. Often, the doctors can only look at what it looks like "on paper" and the strength and passion you and your husband have for more time together is something they can't take into account. It can make such a difference for now, can't it, no matter how the long-term looks. Let us know how the feeding goes today.

I'm sending love to you and your husband and hope everything turns out the way you want.

Take care,

 

[Izzy]

That really is such positive news. I hope things continue in this way for you. Izzy x

 

[Skye]

Brilliant news that your husband is off oxygen and breathing normally. I hope he continues to improve, and is soon home with you.

 

[sad nell]

thanks for keeping us updated, so glad its better news, lets hope for a calm and comfortable weekend for your husband . take care love pam