My Story

Mom started exhibiting the symptoms of PSP probably 5 years ago, frequent unexplained falls, poor eyesight, swallowing problems. She was finally diagnosed with PSP in Sept 2011, after yet another fall and ended up in A&E for the 3rd time that month.

I gave up my flat and returned home after learning the seriousness of the condition, I wanted to do my bit to help out.

Home help was arranged, and she was getting to begin with, 3 half hour visits per day from social services. The falls did not end there though, she was still having falls in between visits resulting in the occasional trips to A&E.

It was the A&E doctor who recommended that we consider placing mom in a care home, after pointing out to me that 'this was her 8th time there with an head injury since her diagnosis, it cant be good for her all these bangs to the head'. I had to agree, and asked for what help he could offer and who to contact.

It all went through pretty quickly, we had help from a company called Care Home Selection who located local vacant rooms and arranged for us to visit.

Mom was placed in a home 2 months later, April 2012, but she hated it there and was forever complaining about the lack of care.

We moved her again in July 2012, hoping a change of environment would suit her.

BIG mistake, mom complained even more and was quite often depressed, saying she wanted to go back to her own home. Her falls did not improve either, still ending up in A&E on occasions because she would not stay seated.

In October, we (the family) decided maybe she would be better off at home, with a personal assistant who could be there to keep a close eye on her.

We started the process of trying to get her back home by contacting her social worker, but after months of indecision, social services eventually said NO, they cannot meet the level of care mom needs unless she remain in a nursing home.

That was the beginning of Feb 2013. We succumbed once more to moms wishes and moved her again, she moved into another home, closer to the family home on 19th Feb.

Its early days I know, but she seems a lot more settled now and seems to be accepting that she needs to be in a Nursing Home, and cannot be as independent as she would like.

As I have said to her, 'you have taken care of everybody for long enough mom, it is time for you to be taken care of'

Tony C

10 Replies

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  • hi tonuy

    it si difficult as i have psp and know thata tspome stage i sahll be like your mum

    but it IS tiem for her to eb looke dafter

    i do hope she settles in the new home

    lol JIll

    :-)

  • Hi Jill thank you for your post, I know that you are going through the terrible disease too and hope that the medication you take will delay the process somewhat. My Mom is on a course of Cocorel Dopa, what medication are you taking?

    As I mentioned in a previous post, I think you are a very brave lady and I admire you immensely. It is great to get an insight of an actual PSP sufferer.

    All the best

    Tony

  • Hi Tony,

    It sounds like you and the family are doing the best you can for your Mum. Like Jill I hope this time she will settle well and you will all be able to enjoy the time you have with her rather than having to spend it sorting things out.

    h

  • Hi H, thank you for your reply.

    Its been just over a week now since mom moved to the new home, she seems happier, so hopefully this is the final move for her.

    The good thing about this new home is that it is a lot closer, so I can visit more frequently.

    Where about are you from H?

    Take care

    Tony

  • Tony, First welcome to this great group of caregivers and people with PSP. You will find this site very valuable. As you know by now this is a terrible disease, PSP. I'm glad you mentioned about not being able to get you mom back home from the care place due to social services. Something to keep in mind before you place your PSP loved on in a care facility. You may not be able to get them back out even if you and they want them back home. Thanks for posting and giving us some insight to your mom and PSP.

    Jimbo

  • Hi Jimbo, thanks for the welcome mate. I actually registered on this site some time ago, but haven't been on the forum for a while.

    Yea, I found out the hard way about social services, I could not believe how difficult and complex the process was. Much more checks and assessments to get Mom back home, than it was to get her into a nursing home in the first place.

    Have you been through something similar?

    Take care Jimbo

    All the best

    Toiny

  • Tony, My wife, Sharyn, has PSP. Diagnosed in 2010. We are going through PSP bit by bit. At the moment she seems to be on a plateau where nothing much is changing, thank God!! We, in the USA, are about to get government health care which sadly isn't graciouis to the elderly. It is what it is and we will all cope with it. I'm not at the point of needing outside assistance at the moment but realize that time will come. I must start looking into the possibilities soon.

    All the best to you, Jimbo

  • Hi Jimbo, sorry to hear about your wife's PSP diagnosis, its good to know though that it seems she is still in her early stages and you are managing her condition.

    As you have probably read on this forum, we have the NHS in the UK, but many of the health professionals are oblivious to PSP and we get very little help in that respect.

    I hope that your government health care (Obama care?) will give the PSP condition more recognition.

    It also annoys me that many sufferers in the UK, PSP or otherwise, need to sell their property they have spent all their working lives building, in order to pay for their care, dont get me started on that :(

    It is something I will need to consider in the near future.

    You and Sharyn (nice name) have a great day

    Take care

    All the best

    Tony

  • Tony, Yes Obamacare. We shall see how it affects us older citizens. We have some retirement resources but I can see that those will be depleated with Sharyn's care as PSP progresses. I don't care if she is comfortable and happy to the end. I will survive on little once she is gone.

    Jimbo

  • hi tony

    no meds at all -tried cocareldopa and amantadine but no difference

    be strong!

    lol JIll

    :-)

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