i havent posted in a long time as we have just been trying to manage dads PSP, make the best of life, mum wasnt ready to accept help and i have had a new baby (which had helped bring some much needed smiles). unfortunately dads condition has deteriorated a lot and mum recognised thr need for help. our public health nurse came out yesterday and suggested some home help and possibly a day placement some days as a starter (wont hold breath as services have all been cut in ireland due to funding).
anyway the day service the nurse suggester is primarily set up for people with Alzheimer's and similar dementia. Dad definitely has cognitive changes - speed of processing, clarity of thought, behavioural changes, emtional outbursts, lack of safety awareness and also significant word finding difficulties with his speech and language, but to me he still is very much aware of what is going on around him, the people and events. Maybe its rose tinted glasses on our part and maybe this facility is the most suitable of what is available but Im not sure the nurse fully understood the complexity of PSP symptoms. We are welcome to go view it, and parents said they will try it and see what happens. I would just hope its a good placement that will provide dad with appropriate stimulation and mum some time out. just wondering what others think?
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catherine_h
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Hi again Catherine,. I have just been reading about the Fair Deal in Ireland and how it is to change. Do you know about this? It might be helpful to you assuming they do it!
I was a bit worried about the home you mentioned as it is very much focused on Alzheimer's. I doubt they know much if anything about PSP. I doubt your Dad will feel at home there. However there are another three in Drogheda with 4-5 stars. I really do think you should visit these homes first.
Hope you don't mind my comments but my husband found a lot of elderly women with Alzheimer's where he was. He was really scared of one. Despite me telling the staff there she kept going into his room. Very scary when you can no longer move or shout for help?
So go and inspect the nursing homes I found. They might be more suited to your Dad's care needs?
Congratulations on the birth of your baby by the way. Thank goodness there has been some happiness in your life.
I originally come from Dublin by the way. My aunt lived in a Residential Home for a few years and was very happy there. It was run by the HSE but not sure if they still do that? It would be no use to your Dad however as he sounds like he needs Nursing Care and if he doesn't now he will very soon. Although I looked at both websites I think it would be much better to visit them Catherine.
thanks so much Marie for that info. its actually a day placement for a few hours not full time care. we will definitely visit first, dad said he is ok to try it. i am a bit apprehensive as it is mainly for people suffering from alzheimers but the other option in the cottage hospital is for people able than dad. we'll see gow it goes
Dear Catherine_h, please persuade your Mum to accept all the help she can get. I am a reasonably fit bloke and yet I needed to swallow my pride and push for support and respite where she is currently for 2 weeks. I had a meltdown. Hospicecare provide an excellent daycare once a week. The carers we have are all excellent and provide social interaction for us both. They have almost become part of our family. I wish your Mum and you all the support I can, it may be a long haul.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.
By private mail I am sending you our particular experiences on PSP-RS that we hope you can find useful.
I am not a phisicyan. The information I am sending you through private mail is a compilation of our own experiences and of the people who participate in the PSP chat. The information is made with good will and with the best technical criteria that I could contribute, thinking above all in the guidance and support of the caregivers that, with the exception of the help found in the websites and chats of PSP associations, should be face alone this unknown disease.
I would definitely go and see it and probably give it a try, as your Mum could do with a break and your Dad may just like the change of scenery and company. Mum went to a day centre at the local hospice and really enjoyed it but unfortunately she had her quota of time (these services have high demand so you are only allowed so many sessions in our area) and she really misses it. I have tried to find a private day centre, I have tried social services but I have not been able to find anywhere that can take people who need help with toileting and feeding. The best I could find was a local care home who would send someone to Mum to keep company & maybe do some activity, by the time travel time was taken into account this was working out at about £70 for an hour! I have found the best for company for Mum is to take her for a push in the local park where she can watch the children play in the river and dogs will come up & say hello and she actually feels part of the world.
Hi Catherine, huge congratulations on your baby! This little one will be the most welcome distraction for all of you! Sorry to hear your Dad has declined a lot, mine has too. My mum gets 6 hours a week carers to the house paid for by the local authority. He also has a place for 12 weeks day therapy at a local hospice, he is really enjoying this. It is stimulating for him, seated excersizes, music, massage, group chats and he's getting a massage too! Only 12 week course though so shame it will finish soon.
I agree that my dad also is still very aware of who and what is happening around him. I'd suggest your parents go and try it, it may be good?
Hope your mum gets some help, my mum really needs it, makes life just that bit easier.
that 12 week programme sounds great, it will definitely stimulate him and provide your mum with a rest and knowing hes well cared for.i hope u are doing ok, take care xx
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