repeated chest infections

[Girvangal]

hello all.

Mum can no longer speak along with zero mobility, dystonia and failing eyesight.

she had a chest infection 2 weeks ago for which the care home gave her a course of antibiotics. Almost as soon as they were finished she has gotten another infection. I think she must be aspirating food or liquid although she still seems able to swallow.

She is getting very distressed as the antibiotics are making her incontinent and gets upset at having to wear big pads. I know she is absolutely hating this. It is a struggle to watch her try to communicate her wishes now.

Is a care home duty bound to just keep giving her antibiotics? At this stage in her hellish PSP journey it seems to be to be just prolonging the agony.

the hospice nurse told me a few weeks ago that when her swallow became a real issue they would step in….. is this the time? I’m weeping writing this as I know what I would be asking but I also know that my wee mum would not be wanting to prolong this agony either….

[Harshacceptance]

I hear you and understand the horrific challenges, I'm there with my poor dad ... you just don't know what to do for the best or what happens next, my dads quality of life and dignity was taken away 18 months ago ... how much more can they take 😢

You don't mention whether you have a palliative care team engaged? in our situation its my expectation that they in agreement with Dads wider clinical team (DN, GP etc) agree to move into end of life care. The consultant visits my parents on a monthly basis, it's not nice as Dad is still fully aware and in a similar situation to your mum.

Has a conversation been had with the palliative team whether to change her medications etc dad is now struggling to swallow pills, some can be injected others not, we have eol medication in the house as and when it is required.

The care home / carers will follow the instructions of the medical team

I pick the phone up to the palliative team on a regular basis so I can have an open and direct conversation without my parents being there as it is a crappy, horrid yet necessary conversation.

All the very best 🙏

[Girvangal in reply to Harshacceptance]

Thankyou for your reply. Yes, I have been in touch with hospice team, so I guess I will be guided by them.

Like you I just hate seeing my once, intelligent, creative, hard working mum reduced to sitting in a chair all day with complete loss of independence and dignity….

All the very best to you also.🩷

[REOC]

hi Girvangal, yes I agree re getting support from palliative care. We also have the end of life meds in the house for mum. They were given when they suspected a chest infection (it wasn’t) but the antibiotics wiped her out so much we had a discussion about not giving them next time. Mum agreed that she wouldn’t want them but we weren’t sure if she was just repeating our words back to us, which she does a lot. We were advised that the palliative care team or the gp can make the decision on our behalf, what the best course of action is at any one time. Can you get a signal from your mum as to whether she wants the antibiotics or not?

[Girvangal in reply to REOC]

Thankyou for your reply. I think I will try to have this discussion with mum. She can only tap out a yes or no though.

She has a DNR already in place and said she didn’t want a peg fitted, so I’m fairly certain what she would want.

It’s the guilt of not wanting to feel that you are ‘wishing her away’ but knowing in your heart that this way of life is just torture for her. She is getting so agitated now with lack of communication.

All the very best to your mum .

🩷

[Pinkcamelia]

Sending you a hug. As I know it is so difficult emotionally trying to do the right thing for your mum. My husband had several water and chest infections last year. Neurologist told us another could wipe him out. This condition is awful.

Whatever decision you make after guidance is only out of love for your mom. 💜

[Girvangal in reply to Pinkcamelia]

Thankyou . It means a lot to hear from others in exactly the same nightmare 🩷

[MRSYafffle]

Sending lots of love your way. I was in yhe same situation with my mum, basically the care home said that if she showed any improvement they had to try them again.

A discussion may be needed about end of life care and is there a plan in place as there should be.

Again sending you all lots of love, I know how heartbreaking this journey is xx

[Girvangal in reply to MRSYafffle]

Thankyou for your kind and supportive message. Yes… I understand the fact that the care home wants to do this. I just struggle with the fact that , ultimately, it is never really going to improve mum’s quality of life.

🩷

[David750]

Hi Girvangirl, my wife had PSP, fortunately with no aspirations, due to my detailed attention to the nature of the food I fed her from slow cooked stews as cooked through to double liquidising them and seperating feeding times to avoud swallowing fatigue. I am in Ayr Scotland. We had the Hospice palliative care nurse visit but they could not accommodate due to covid lock down. Before then it was agreed my wife end her life in the Hospice. (We had the District Nurses Palliative Care Team)

From your explanations I would be making arrangements for her to go in now. IF you are in this locality they can take your Mum into Cumnock as the new build in Ayr will not be ready until atleast April. It is a known fact, bar some rare exceptions, that any one with this condition going into hopital or a carehome deteriorates. Hospices are different. All my very best wishes. 🙏

[Girvangal in reply to David750]

Thankyou David. Am I correct in thinking we have met? I did a fundraiser for PSPwith Troon Coastal Rowing Club?

[David750 in reply to Girvangal]

Ah yes indeed - joined the dots - I always wondered how your Mum was getting on. Do you wish me to ring you again? I shall not be offended with a no.

[Girvangal in reply to David750]

Thankyou for your kind offer David. I am coping at the moment. I had a long chat on Sunday with a woman who lost her mum to PSP a few years ago and that helped.

I wouldn’t want mum to go to Cumnock at this time as it’s too out of the way for her friends to visit. She has such a loyal wee band of friends who visit weekly.

I am seeing a nurse from the hospice tomorrow who I hope can bring her insight to mum’s situation.

[David750 in reply to Girvangal]

I fully understand A...., distance and close friends are so important. I am so pleased you have a lady who has had such experience to talk things through with and the hospice nurse is to meet you. All my very best wishes 🙏

[David750 in reply to Girvangal]

Hi Girvangal, I've been thinking - the lady you have been able to talk to. If she is in this county and having the knowledge of caring for these conditions, she may like to consider volunteering for the PSP Association. They're looking for link volunteers like me. It would be of great benefit to have a lady volunteer in this county. I have always felt more comfortable about woman to woman and man to man in terms of support.

[Girvangal in reply to David750]

I couldn’t say. I don’t know her very well at all. She is a friend of a friend…. Her mum died over 14 years ago, so I’m thinking she might have looked into that before now.

[David750 in reply to Girvangal]

Link volunteers are a recent venture so she may not be aware. Anyway I appreciate it was a long time ago.

[Kelmisty]

I’ve not got to this stage yet with my Mum and I think I will feel the same as you describe.

Mums carehome is very experienced in end of life care, I would like to think they can guide you but also ask the hospice or palliative care team if they can offer guidance?

All I can say, is keep strong - no matter how you may feel your heart is breaking. Xxx

[Girvangal in reply to Kelmisty]

Thankyou!! I have contacted hospice team and am awaiting a reply. I will also have this discussion with care home too.

Mostly I do keep strong….. but sometimes it can all get overwhelming.

My gorgeous mum taught me well though, after my dad died15 years ago she used to say- if we were getting teary talking about him-“ right!! We can cry for 5 mins then we snap out of it and do something to distract ourselves!!”

🩷

[Kelmisty in reply to Girvangal]

It’s the balance of not wanting Mum to suffer vs the not wanting to lose Mum. Xx

[Dosco]

My wife, who died recently, had similar issues in the final stages. One of the terrible things about PSP is loss of ability to swallow, and as you've pointed out, leads to aspiration to infection and pneumonia. A time came when she could no longer swallow food and she had bouts of chest infections. At this time, we stopped eating and gave a hydration drip. Soon, however, this too came to an end. Three days before she died, I was feeding her chips of ice for her thirst. She drifted into sleep and had a peaceful death and was rid of this accursed disease. My advice is to have her surrounded by loving family. She will be able to hear them and know she is not alone as she makes her final journey.

[Girvangal in reply to Dosco]

Thankyou for your reply. It’s very comforting to know that , on this site, people really do understand what you’re going through!!!

Yesterday a nurse was trying to tell me that she didn’t think mum’s chest infections were caused by aspirating….. even though I pointed out that I had been reading so much about this advanced stage of PSP and it’s common symptoms.