Progression

[Blitzford72]

My mum got diagnosed with PSP just last October,but that took 18 months .She is now in a residential home ,but I fell so guilty I couldn't keep her at home 😞

The PSP has progressed so quickly

Her slight is problematic,falling alot,her speech has become very bad over the last month .

Thankfully her swalling doesn't seem to be a problem .

She now has an ulcer on her leg and just been diagnosed with heart failure.i know she is coming up to 87 and had a good life .I just fell so helpless and sad ,sorry for this post ,but I know there are a lot of you out there going through this and just need some love 😥x

[Kelmisty]

Even if it’s the right thing you feel guilty, even if you can’t do it or cope. You’re keeping your Mum safe and somewhere that hopefully can help you be with her and spend quality time with her.

[Blitzford72 in reply to Kelmisty]

Thank you ,but it's not really qualify time with her ,she has a very bad ulcer on her leg and that seems to be all we talk about 😞 x

[Kelmisty in reply to Blitzford72]

Yup unfortunately sounds about right, my Mums 70 and her illness is all we talk about, but quality time is not what you’d determine normal, but it’s time with my Mum.

[messier]

I feel for you. You are in a very similar situation to me a few years ago. My mum had to move into a nursing home at a similar age because she was on her own and it was impossible for us to provide the level of care she needed. She was at a similar stage where she could not stand even holding on without falling. After that initial progression she then deteriorated gradually over four years. She had CBD and gradually lost any ability to move anything. I had big issues with the nursing home which are well documented in my posts! Others have had much better experiences with care homes so I hope you have a good place. I have just signed up with PSPA as a trainer for care homes so if you think it would be useful for the home to have training let me know - we can provide it online.

[Sun-flowerwearer in reply to messier]

Wow Messier

I am really heartened to hear you have been signed up as a PSPA trainer in care homes .. that’s a brilliant thing to do for everyone. Spreading the word. Thank you x

[DALLY123 in reply to messier]

This is an amazing thing you have done! My dad's care home had not heard of PSP before and no matter how much me and my family tried to educate them, it was always a 'we know best' attitude from them. Even in those last days. Months before my dad passed, my sister told the care home about the training that PSP provide but the manager did not want to know. We will be speaking to the care home again soon as this is so so important and can help the next family. We were very disappointed at the managers attitude and lack of want to learn about PSP. (I will say however that the majority of carers were lovely and we did feel my dad was looked after well).

[Blitzford72 in reply to messier]

Thank you ,I would be very interested in this ,as the residential home mum is in ,I don't think they really understand,so that would be so helpful ,mum said yesterday she got told off for slumping in the chair ?,that's what happens with PSP suffers,I will ask the home about it and get back to you xx

[messier in reply to Blitzford72]

I know what you mean. Mum used to tell me about all sorts of things that she got told off for by the carers! If you contact PSPA they will organise it.

[DALLY123]

I am so sorry you and your mum are going through this. I know it's easy to say and much harder to actually achieve, but please try to stop the guilt. This is the best decision for your mum and you. XxMy dad went into a care home at the age of 68, due to the progression of PSP. We could not meet his needs at home. It was extremely difficult and emotional but also it was the best decision for our dad. His progression got worse over the next couple of years but we knew he was looked after there. (That didn't make it any easier leaving each time)

We as a family will definitely be returning to the care home to try and get them to take on the PSP training that the charity provides, as knowledge of the actual disease and how it affects patients and progresses was ... Well there wasn't any knowledge about it.

I know the helpless feeling all to well. Just know you have done the best for you mum and she is being cared for xx

[Blitzford72 in reply to DALLY123]

Thank you for your support and kind words x

[Blitzford72 in reply to DALLY123]

Thank you ,for your kind words ,it breaks my heart to see my mum like this , its bad she has now started not being able to see because of the flashing lights ,I hate this disease xx

[DALLY123 in reply to Blitzford72]

It is truly horrible, for the people diagnosed and for those of us who love them. No one suffers the same symptoms or in the same order. I found it so helpful reading other people's journeys with this disease but also realised my dad's journey was his own and you just don't know what that next step/phase will be. You are almost just always waiting for the 'what next'. I really do send you and your mum my best wishes xx

[Runner333]

Sending you ❤️. It seems that the progression of psp is different for everyone so the care for our loved ones will be different. I am sure you are doing your best! One day at a time.

[Blitzford72 in reply to Runner333]

Thank you I try my best for my mum xx