New to this area of TP

Kriss

Registered User
May 20, 2004
513
0
Shropshire
Hi everyone, I had forgotten my login details from an age ago (yes I did stop and wonder if it was happening to me!) so while I was waiting for an email to get me back online I spent some time just scrolling through existing threads and shedding lots of tears for and with you all. I'm back on TP but have never been to the End Of Life Care part of the forums before with my Dad or my Aunt both of who suffered other medical issues that caused a rapid decline at the end.

Mum on the other hand at 90 years old checks out pretty highly on the physical scale, the only meds she has taken regularly in past few years have been a daily aspirin and simvastatin. She has vascular dementia and has been on the slippery slope for about 4 years now. In short she's had a few episodes of chest issues over the last 18 months (always come out as just upper respiratory with no real underlying infections). But each one has flattened her - literally. 2 weeks ago she shut down completely - unresponsive apart from pain, ended up in ambulance, off to A&E and eventually onto a respiratory ward. She was on intravenous fluids and strong antibiotics but remained out of it for over 48 hours. Doc filled in the DNR form and as I came away I felt he had prepared me for the worst. The next morning I had a call from the ward to say she was up in a chair and ready to come home!?!?!?!

When delivered home by ambulance the next day I was greeted with "It's Christine!" - something I never thought I would hear again. We had a couple of good (well normal) days which meant getting her up, dressed, onto her frame, walking 5m, sitting in chair watching tv/sleeping, being fed/sometimes some finger food, and the reverse at night. However after 2 days it was another day in bed, then up for one then another in bed etc. This week we had tears, asking for her Mum, fought when we tried to help her from chair to standing, and has now been in bed for 4 days pretty much out of it again. I had a good chat with her GP yesterday and she arranged for District Nurse to come out - more to ease my concerns I think as nurse didn't see the point as there was nothing she felt they could do!

From reading some of your experiences I can see there is no answer to the "How Long" question, but I am feeling very lost and in need of any notes to compare where we are at as you are willing to share. I haven't left the house since she came home but maybe I do need to try and be as normal as possible. I am so lucky that we have Mum at home (past experiences had us several years ago consciously set up these living arrangements just in case), and I have husband and son to help and a very good friend who calls twice a day to help with Mums personal care. I am also self employed working 90% from home though I will need to get back to the routine of a day elsewhere on a regular basis soon.

Mum appears to be in the late stages now and keeping her comfortable is our priority but given her otherwise strong constitution - good heart, blood pressure etc - could we be looking at months/years as opposed to the days/hours we thought we had a few weeks ago?
 

Gwendy1

Registered User
Feb 9, 2016
413
0
Glasgow
Hi Kriss. As you've already said, the who knows?/how long?question is without an answer. My dad was put on end of life/ late stage in January. He has bad days,..and worse than bad days-physically and mentally. But.. He appears to be medically 'comfortable'! It's an unpredictable journey, I think. Xx


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