Fearing the end is not far

[Careenh]

I am sitting here with my beloved mum on a balcony in Tenerife having spent a week away with them in the sun. Today I go home but they are here a few more days. My mum has changed so much in the last couple of weeks. Every small amount of liquid/food results in desperate choking. I find it so distressing. She wants to sleep alot more now but when awake seems very disorientated and not really with it. The classic PSP upward gaze ever present. Whilst we have been away I know there has been a care plan meeting at the hospice she attends so it will be interesting to hear their plans. The rapid decline is quite scary and I know she is distressed. I wish she would no longer suffer this vile disease but at the same time I can't lose her...not yet..

God bless you all who are dealing with this living nightmare. Xxx

[Karynleitner]

I am so sorry. PSP is such an awful disease. It is beyond heartbreaking to see those we love suffer, especially when they are silent and can’t tell us what they’re feeling. Yet, just knowing they are with us is comforting. The thought of the loss and grief is incomprehensible. I keep thinking there must be an answer somewhere . The truth seems to be that with PSP there is no good coming.

May you be blessed with many more happy days with your mum and filled will strength when she is taken from you. God bless .

[AngelineAmy]

Careenh, from what you described my mum sounds more advance in her decline. These days her eyes are closed most of the time unless if I ask her to open them for which she manages briefly. Her limbs are stiff and her hands are closed into fists. Her arms have become tightly held against her. Her neck and back are very stiff and seems to hurt if we try to ease her stiffened neck. I find that massaging her feet especially her soles with essential oil like eucalyptus or frankincence appear to ease her discomfort. At this stage we have to do all we can to bring some comfort to our mums. It is sad and scary to think of what is next. We placed our mum in a private extended care hospital soon as she started rapidly deteriorating with choking on food and drink, and acute UTI when she was unable to pass urine normally as it got to a point when she unable to PU for up to 12 hours. Bowel movement became a 3 to 4 day event with suppository. She also lost her ability to speak as soon as she lost her ability to swallow. We are torn up inside and feel so helpless as we watch our mum eaten from the inside by this awful PSP. She has been in hospital care for 13 months now since February 2017. Her diagnosis was in 2013. It has been almost 6 years now since DX. Spend as much time as you can with her. Hold her and tell her you love her. That is what I do when I see my mum. I whisper prayers in her ear to pray with her. I massage her gently with body lotion hoping to ease her discomfort.

Hugs

Angeline

[Satt2015]

Saying a lil prayer for you all x

[raincitygirl]

Sending you a hug Careen..No matter what disease your mum suffers, it is a heart breaking time to watch with them through to the end. I remember it. Hugs to you.

Anne G.

[Kevin_1]

And bless you too Careenh

We are just a little behind you on our path.

Yes, living in a world shaped by PSP is grim.

Thinking of you all at this time and wishing your Mum the best of it all.

Warmly

Kevin

xx