End of life medication?

[PDDJED]

My father is in final stages of PSP, has been in bed for months including being on oxygen most of the time. He is currently running a temperature and had a strange lapse into limp unconsciousness. His temperature has since returned to normal but it seems odd and the GP says probably best not to send him to hospital as it might finish him off to be moved. There are no signs of a urinary tract infection and his lungs are fairly clear although he has limited capacity. I wondered if anyone else got to this stage and what doctors advised? I am wondering if we shouldn’t give him extra painkillers? He is on paracetamol. He wanted to die at home so we are happy that he is at home but just worried we may not be doing the right thing for him.

[Kevin_1]

Hi

I am so sorry to here your news. It must be hard for all of you.

My Liz is in a nursing home. The staff are exceptionally clued up and trained in end of life care.

They have often said that when someone nears end of life the move to a hospital can be the last straw for them.

In addition, going to hospital will increase his exposure to COVID - 19.

If you think he might be in pain you might consider having him assessed by and Palliative / End of life nurse. Personally I would want an end of life nurse sitting in the background anyway. They can be a godsend in the closing days.

Again I am sorry you are facing all of this.

Wishing you both the best that might be.

Warmly

Kevin

[PDDJED in reply to Kevin_1]

Thanks Kevin, we do have a nurse but he seems to be less experienced in actual end of life care!!! Not sure if anyone else is available and it’s such a difficult time to get anyone. Hopefully he will be ok and us just fighting a minor illness. Or it might be the PSP progressing?

[Kevin_1 in reply to PDDJED]

Do keep us updated.

I expect others here, who are more experienced with this stage than I, will chime in.

Wishing you the best.

Kevin

[PDDJED in reply to Kevin_1]

So kind of you thanks so much. I don’t know what I would do if I hadn’t read all the chats on this forum. So many tips from everyone and similar experiences...

[Kevin_1 in reply to PDDJED]

Same for us. Those that went before us were lifelines of info and advice. And the support is second to none.

We all get each other trough as best we can.

[journeyofjoy in reply to PDDJED]

I just read that you are in the UK so my original reply to you may not be as helpful. Hopefully someone else can weigh in with suggestions.

[Hidden]

Larry was in end stage when he went to in house hospice care. He had nothing wrong with him other than his body had come to an end. It couldn’t go on. The hospice people gave him Ativan, morphine and Haldol to easy his death. I had thought he was going to be coming home. This was suppose to be respite care for me. In hindsight I know this was the best of a bad situation with me really not knowing what to do. We had both done the best we could. I hope your father is given the drugs to make dying easier for him and you.

[kenh1]

Our hospital has a Palliative care team who are closely linked with a local hospice. Everything went so smoothly and painlessly that I was interviewed for the last months PSPA magazine. Sounds like your health authority are not up to speed on end of life care. If you have a local hospice it might be worthwhile getting your GP to refer you to them. They can help people who wish to die at home. Wishing you well and a peaceful and painless ending.

Ken.

[PDDJED]

Thanks so much Ken

[PDDJED]

And thank you Jeff as well. We will try and get more help on this I think.

[journeyofjoy]

These symptoms - fever, temporary lapse into semi consciousness, no signs of UTI - for my husband, these were last stage symptoms. If you haven't already, I would phone Hospice now so you have someone on board. I'm not sure what their procedures are with the Coronavirus but they should be able to help you. At least they should deliver you oxygen and a "comfort pack." The comfort pack contains meds. You should have these items in the house in case you need them. You can do a lot for your father on your own with advice from a nurse over the phone if they aren't able to do regular visits.

I am not a medical expert by any means. I'm just going on my experience taking care of my husband and seeing him through to the end. I encourage you to call now. Sometimes things move very quickly.

Please forgive me if I gave you too much blunt information but I feel strongly that you should get Hospice on board. If you are outside the U.S., maybe someone else on this site can recommend the equivalent of Hospice.

All the best to you.

[AnneandChris]

Hello there

I agree with Joy.

Having been through this in December. One route for you could be to get your community nurses involved. Our GP and community nurses looked after Chris at home. Some time ago I had essential meds delivered and then a nurse arrived with a box of kit, so everything they needed was here. I only had to phone the nurses control centre and they came.

As Chris deteriorated he had a syringe driver fitted and the nurses administered a small dose of morphine plus another drug glycopyrolate to dry up secretions, about a week before he died. I could phone any time and they would come out to see him. They and our wonderful GP saw us through and he died peacefully at home, where he wanted to be.

So please talk to your GP and get the support you need. Keep on keeping on

Anne

[bikershel]

Sounds similar to my dad. We had a palliative care nurse and gp support him in a care home. He had morphine if he exhibited pain, but in the last 3 days he had none. He also had something to clear the mucus in his throat (when needed), plus one dose of medicine to calm him. The last few days he had no medicine, just lots of love and music. Sending you best wishes xm

[Katiebow]

Ben died peacefully at home as he wished, I was terrified he was be in pain but couldn't voice, his body was very contorted and stiff. He had a syringe driver fitted with low dose morphine and other helpful drugs to ensure a peaceful and painfree end. The driver was only in for a day before he died as he was already very near to the end of his life. Hope that helps

Sending love

Kate xxx

[Abrecheisen53 in reply to Katiebow]

Katie,

We are also nearing the end as well. John is in home hospice. Please excuse my ignorance but what is a syringe driver? We have morphine and a syringe, but have never heard the term syringe driver.

Thank you, Alice

[Katiebow in reply to Abrecheisen53]

It's basically a device that is set up by the health professional to systematically administer the drugs to keep the patient as comfortable as possible at the end of life. The health professional comes in every day to refill the driver which, in Ben's case was fed into his abdomen through a tube, with a cocktail of different drugs to eleven pain, nausea, anxiety etc. Hope that makes it clear.

Kate xxx

[Abrecheisen53 in reply to Katiebow]

Yes, thank you!!

[Yvonneandgeorge]

George has a syringe driver, I was using the suction machine on him, we made him comfortable sat with him, holding his hand, every one was coming in, the District nurses were amazing. It was a very sad time, but he was better off at home, he wanted to stay home. I would avoid the hospital. Sending you massive hugs. Yvonne xxxx

[PDDJED]

Thanks so much for all your replies. So helpful at this important stage which we want to be just right for him. Hope you are all staying safe.

[Megabrew88]

So sorry to hear that you are going through this difficult time in an unprecedented moment in our history.

May I suggest you enrol the help of your local hospice to help you with end of life care.

The hospice helped me facilitate everything from medications and GP, Rapid response team and DNurse visits in the last week that my B was ill.

Just a note though, although the medicines (pain killers) were delivered and made available they would not administer it unless the patient is in obvious pain. My B wasn’t apparently in pain, just laboured breathing albeit rhythmically.

So I just kept watch of my B, prayed and talked to him and comforted (and reassured him that it’s ok to let go and that I’ll be ok) constantly as he went through the last days of his life.

You may want to take this time to say what has to be said and have a closure with your Dad. I found that it gave me a lot of strength, peace and lightness, that I was able to let go of my B with no regrets, knowing that I have done everything I could for him without holding back and I had a proper closure with him in his last days.

Love and light,

Mx

[AJK2001]

My Mum died at home as she wanted. There was no point in her going to hospital, they couldn't have done anything for her and it would have been a frightening experience for her. Instead she stayed at home, end of life drugs were prescribed a couple of weeks before, so ready if & when needed. They were administered for her final 36 hours. Her breathing changed over that time but she was not in distress or pain and passed in her own home looked after by people who she knew and loved her. I call that a result with this awful condition and hope that your Dad is able to pass in a similar way. Thinking of you. xxx

[Jackie1968]

Hi

So sorry to hear that your at this stage.

My mum passed from PSP on the 10th march.

Mum never showed any signs of being in pain or distress.

We discussed end of life meds with her doctors and care home staff.

The doctor was fairly confident that she wouldn’t need them and would gently slip away that was actually the case .

But it was agreed that all the meds were in place and to hand if she was to need them .

Thinking of you at this sad time

Jackie

[Nanny857]

I'm so sorry your dad is at this stage. I would ask your GP to refer your dad for hospice care at home. They will ensure he will not be in any pain or discomfort. In the meantime you can hold his hand, tell him how special he is to you, reminese of favourite times together. It will be a sad but special time to have together.

Thinking of you, Nanny857xx

[Sarah1972]

Now could be the time to contact your dr and ask for a syringe driver. My mum had this and was a godsend. It delivers pain relief over a period of time. Nurses come in each day to reload and increase or decrease. It will keep your dad pain free and relaxed as much as possible. My thoughts are with you at such a difficult time. Take comfort that you are with him and he is not alone. Xx