What is next?

Hi I'm new to the forum and looking for some help. My mum was diagnosed two years ago after several falls and being told it was possibly Parkinson's and the start of dementia but we were convinced this was not the case! Mum is 87 has trouble with mobility, speech, dry mouth, swallowing, chewing, taste and problems with her vision. Dad at 89 is her main carer and wouldn't have it any other way! As a family we worry what is next, how long can Dad continue dressing her etc. We realise Mum has probably had PSP for perhaps 4 years but managed with the help of Dad to keep aloft of things from us. We have seen a deterioration in the last 2 months and she is saying she has no strength in her legs. I know this is a hard question but what comes next? Would appreciate any advice or guidance as to what is likely to happen. Thanks Howlbeck

14 Replies

  • Welcome to this site. My husband has PSP.

    Have you contacted the PSP Assoc. ? They will send you information.

    This site is a good back up as we are living it. One thing that is clear is that it is a different progress for everyone, with plateaux. But its always downwards, so make the best of now.

    If your dad wants to continue caring then you need the support of carers. Where are you ?

    We have a community team who monitor our needs. GP. Hospice. All offer support.

    Personally we found the Hospice , where Chris goes for 4 hours really good. A break for us both and he enjoys it.

    Let us know how your dad is managing.

    love, Jean x

  • Thanks Jean. We are between Sheffield and Chesterfield. It is hard for Dad although he won't admit it! They have both been in denial thinking Mum will improve but reality is sinking in that there is no miracle cure and she is not going to get better. She had plateaued for about a year but things have taken a downward turn in the last few weeks. Her GP is not interested but the Consultant has been great and has put us in contact with physics, speech therapists, neuro nurse, Parkinson nurse.

    They had careers initially but decided they could cope! I think as a family we might have to try and persuade them to get help.

    Appreciate your reply

    Adeana x

  • Adeana you must persuade your Dad he needs help! I am shocked that at 89 he is expected to care for your Mum. There are people much younger who find they can't cope with it.

    It is so stressful that despite the fact my husband died in February I am still struggling to come to terms with all that has happened. Younger and stronger men than your Dad have been almost brought down by the carers job.

    Please do ensure you get your Dad some help or he might end up dying before your Mum dies!

    Sorry for being so blunt but there is no way he should be doing this at his age. Especially as your Mum is now going downhill too. When it happens it can sometimes be fast and they might well struggle to get help due to a shortage of carers.

    Marie x

  • Thanks Marie. That is one of our worries is that Dad will be worn out and goes first! They are very much a unit and still think we are the children at 63, 60 and 57! We have to read between the lines and through observation that things are going downhill!

    We are due to see the Consultant in August but I am thinking we ought to get an earlier appointment?

    Adeana x

  • Adeana

    Read Georgepa's post. He it totally right about how fast this can move and your Dad will not be able to cope. That happened to my husband. Your Mum needs to be assessed by an OT to see what she needs. However as you are no longer "children" despite what your parents think, you all need to join forces and support your Dad now. He will try to continue because he loves his wife. However he will become ill from stress and potentially this can lead to a breakdown or physical illness. This is a load that needs to be shared.

    Your Mum will think things are fine with your Dad doing the caring but things most certainly are not right. So act asap before you end up in a crisis situation. Your Dad needs to have regular breaks and if you have to drag him out a couple ofvtimes each vweek make sure you do!

    However he needs to have longer respite breaks too. Your Mum could go to the local Hospice preferably. Then someone needs to take him away for that week. This is far from easy as so many of us know. The guilt you feel as a carer is overwhelming at times. So leaving her even at the Hospice will be so difficult for him. He actually needs a lot of love and support right now.

    You all really need to tell him things have to change as not only him but your Mum needs help. You need regular carers coming in. Please don't think that will be enough either. Your parents desperately need their children despite what they might tell you!

    Good luck with this as it sounds as though your Dad is trying to be brave and do it all. I bet there are times he sits down and cries but he will never tell you that because (a) he's a man and (b) his generation tried to do it all and did when they were younger. He is no longer young however.

    Take care of yourself. I don't ever remember anyone of 89 being a carer before but perhaps there was someone before I came onto the site. I joined last October feeling desperate to find help. Sadly my husband died in February.

    Thank goodness for this site because I really don't know what I would have done without the people on here and the advice I got although sadly a lot of it was too late for us. Don't let that happen to your parents.

    Sorry if I sound as though I am lecturing you. I don't mean to but I do know what happened to us and to many others too. I wish someone had told me what to do before we ended up in crisis but I didn't know the site was here until it was almist too late. Good luck with this as I know it won't be easy for you all.

    Marie x

  • I am not 80 but I am eighty . I am full grands on for my husbandhi is ceiling Hoisted and highly dependant .

    I do have carers two x 3 a day and two three hour sits respite ..

    Carers do2hrs a day I do 22 hrs .

    Dad must ask for help if he hasn't already ,

    I didn't want them but knew I had to have them in place in case I became unable

  • I am 80 and manage alone at present. As long as I can move him. I have found a good nursing home where I can leave him for respite. So with that and the hospice I can cope for now.

    I suggest you think ahead for when your dad cannot physically do it but immediately organise breaks for him. The stress of being " on alert " all the time is beyond words.

    One loses sight of oneself.

    love, Jean x

  • Jean you are so right about the stress of being on alert all the time being beyond words. It really is what brings carers to their knees. That and something happening and your loved one goes downhill yet again.

    I don't know how you manage Jean. You are obviously a very strong woman but as you said you lose sense of self. That is so easy to do but so bad for you as you realise.

    Take good care of yourself.

    Marie x

  • Your Dad will definitely need help as the illness can accelerate quite quickly .There can be dramatic changes almost overnight so it is better to be prepared in advance .

    You should be referred to an occupational therapist who will assess her needs and then it depends on your financial situation as to how you pay for your care package ..Depending on how advanced your Mum's condition is you can apply for funding from CHC which basically means theNHS funds your care package .Failing that you can have social care funding which would be means tested .It all gets pretty complicated but get assessed for CHC and do your homewok thoroughly before assessment ..Plenty of advice available on this site and from PSP Assoc.

  • A senior physiotherapist shared this with me - my dad went through all these stages... it's very difficult to read but please do - it's really important... docs.google.com/document/d/...

  • Thank you all for your comments and advice. Me and my sister are going along to a PSPA meeting tomorrow. I think we definitely need to have a heart to heart with Dad.

    Thanks again Adeana x

  • Parkinson's uk have support officers . Where do u live. Google Parkinson's uk support officers for your locality put yr postcode in.

    E mail or ring the support ifgicer they are very good at pointing u to the right place. Good lick

  • May I suggest that you step carefully. I'm sure you will.

    Its really hard realising that you are old and maybe not really coping. So your dad needs to feel supported but not taken over. If you stress your own concern then he can do it for you.

    Sorry for stating the obvious.

    love, Jean x

  • I am eighty still doing everything for my husband hoisting c,easing absolutely everything. Would never manage with the aids.

    I will be kicking and fighting if they take him off me.

    You can be twenty or thirty and unabke to care She is a NUMBER for some

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