Leaving PSP sufferers on their own

This is a strange question but we have now got continuting care for my Mum who is being cared for at home by my Dad who has 1 hr assistance 5 days a week to get Mum up and dressed and then a few longer sessions - if he is playing golf or going to Church. Dad feels it is Ok to leave Mum on her own for up to 1 hour to pop out to the super market or to go to a meeting but I don't. I have been called out from work to Mum by lifeline a few times and once in the evening - which is challenging as I'm a single Mum to 2 young children! Dad never seems to have his mobile on durring these emergencies and Mum has told me that she is scared on her own (speech is a problem for her) Dad does not want to change his ways and as we have CC now I can't really understand why. I know caring is really hard emotionally and physically and he must have time to himself but I am finding the current situation really stressful! If anyone has any ideas - if I'm over reacting or on how to change the situation I would be really grateful!

Saz

15 Replies

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  • dorothy-thompson

    Hi Saz16

    This is a difficult one, on the one hand 1 hour a day of continuing care seems a bit mean, I get 5 hours a week of ordinary care for my husband paid for by my local social services, so whats the big deal about continuing care and why is it apparently so difficult to get?

    On the other hand, I don't think your mum should be left on her own if she feels scared, there is always the danger of something unfortunate happening. It is a difficult call for your dad if he is the sole carer, he has a life thats true but however hard it is, and from my own experience of caring for my husband for the past two years it is very hard, your mum is the priority. The medical profession is powerless as they do not klnow what to do and are even less interested. But either you or your father should ask for more help from your local social services, your mum deserves it.

    And no you are not over reacting, remember, the mark of a decent society is how they treat the elderly and ill, stand up for your mum's rights

    Take care and good luck

    dorothy-thompson

  • Thank you for your kind and wise words dorothy x

  • Hi Saz,

    It is a very difficult situation - one which I have had some experience of ...... My Mum wasn't coping too well with my step-dad's condition (he had PSP) and she needed a break - both were 70yrs old - but she was stubborn and didn't want to appear weak and admit help was definitely needed.

    Sadly my Mum got cancer and had no choice but to accept my decision to get in extra help - we too had CHC funding and they provided funds for full-time care. We had to resort to a nursing home for my step-dad as my Mum was terminally ill and only given 6 months. It turned out to be the best option (although heartbreaking) - it meant we all had quality time - I had been looking after both of them at home previously.

    Maybe you could suggest to your Dad that he gets extra help in, explain your Mum is scared and also explain the potential dangers .... ie falling, choking, etc - sorry to sound a harsh but they are real dangers.

    Your Dad is probably struggling to cope and needs the rest (just as my Mum did), he is probably worried what people might think if he hands over the care to others. He is no doubt a very proud man, as that generation are ...... but tell him it's not about being weak, it's about quality of life - not just your Mum's but his too and it would also give you peace of mind knowing that he can recharge his batteries and your Mum is in safe hands.

    It may be worth contacting your local Hospice and McMillian Nurses who can also offer an occasional hour or two regular sitting. Also try a Day Care centre - these work out much cheaper than one to one care, and it will also give your Mum something else to look forward too.

    I hope some of what I have said makes sense and helps you in some way. Good luck with everything.

    Take care,

    Tree Hugger x

  • Thank you so much Tree hugger - your journey with your parents illnesses has been particularly challenging thank you for your wise and helpful advice! x

  • well hat more can i say after reading the last two replies just good luck and best wishes dont let it get you down its a hard road for all concerned chin up keep smiling psp sufferer peter jones queensland australia

  • Big smiles and a virtual hug for you too Peter!

  • thanks sas 16 just what i needed a smile and a hug and a virtual hug at that \\\\\ a smile makes a hell of a differance in fact i think we should have 1 day a year for a national smile day anyway take care just do your best and nobody can ask anymore of you peter jones queensland australia psp sufferer

  • I only have one other thing to say as everyone else has covered it all, Please spend a little more time with your dad, the reason i ask is Stress? he could be doing things without realizing, have depression or even mild dementia himself, so it's worth keeping an eye on him just in case. Yes do everything possible to get extra help, people get ignored if they don't ask! in fact you ask for them both., your dads health is suffering even if no one can see it? good luck and keep your chin up :)

  • Thanks mummy bear - we do see Mum and Dad around 3 times a week - they both love to see the boys and the feeling is mutual! I agree that keeping an eye on him is important - he just doesn't want to take the help and the advice - I end up feeling a bit powerless - still hopefully the plan for a bit of respite might help us all xx

  • Thank you for your answers and support I it so good to 'talk' to other people affected by PSP and it has been really helpful to share - we (the boys and I) see Mum and Dad at least 3 times a week and I speak to Dad most days so I do try and keep an eye on him - as we have full CC he could have care in 24hours a day fully funded it's just that he doesn't want to - I have discussed it with him (having a couple of hours in the pm for example each day) so many times over a long period I think he is just bolcking the issue out - because as you all so rightly say he doen't want to admit he can't cope on his own - they have been married for over 50 years so I do understand how difficult it must be for him to admit he needs more help and Mum needs more secruity! The hospice have been really helpful with end of life planning and Mum is adamant she did not want to go into a nursing home for anything other than respite and never wanted to see a hospital again - perhaps I can persuade them to have some respite care (which is also funded I think!) for 2 weeks and then have a new plan for when she comes out!!! XX

  • hi were looking after dad and there is 5 of us but sometinmes throughout the day he has to be left alone, due to our differnt work and family comitments. dads 71, we put in for care and he got refused because they feel he has got a family. so itsn a no win situation, we do our best for dad but the OT says he cant be alone, yet in the next breath says we cant have any xtra help, so what do you do the answer is the best you can and thats all you can don take care x

  • Thank you kades xx I hope some of the info on here is helpful for you too - we found the key to unlocking financial support was the local Hospice and Parkinson nurse - although poor Mum was in the final stages by then - good luck xx

  • Hi Saz.

    I had Continuing Care for my Mom too, so she decided to stay at her home and have carers for 4 hours a day. I filled in with a few hours too. BUT she was at home on her own at night (I would stay over once a week but lived a distance away and couldn't stay over any longer). She was fine on her own. We did have problems occasionally with the TV - if she accidentally put the volume up - and if the PEG feed jammed (an alarm went off) but she was insistent she didn't want to go into a home, hospice or hospital and she wanted to stay at home to die.

    We also had two district nurse visits a day and her next door neighbour who was a close friend to her came over daily for a chat for an hour till I got there.

    It was far easier for us to do this after the stage had passed where Mom was mobile. She would try going up or downstairs and fall. After that stage when she was in bed all the time it was easier.

    We were only allowed 4 hours of care a day even with Continuing Care and the social services were on to us to have her put in a home but Mom didn't want that at all and I respected that but as an only child it was difficult for me, living a distance away, I lost two jobs through having to rush over to Mom's house, and finally got a part-time job and spent the rest of the time with her.

    The TV was Mom's big help and we had her a huge plasma TV on her wall which she watched avidly - even the rubbish stuff she would never have watched when she was well !

    Jane

    x

  • Thank you Jane

    It was so kind of you to share your expereince - it is so tough trying to juggle work and help Dad in caring for Mum and look after the kids it can get a little stressful!!

    We are getting much more care for Mum now and the lady that helps get her up in the morning is fabulous at getting Dad to deal with difficult issues and will call the district nurse if needed - he can say no to me but not to her!

    As you say now Mum has so little strength she is pretty much immoble but can still manage to launch herself off the chair (more of a slither!) and the comode given half the chance!

    I am more reconciled to the situation now having shared it with the online community and PSP helpline - they got the hospice involved which lead to us getting more care in for Mum durring the day - Mum wants to stay at home so we can only do our best and be content with that!

    Mum loves the TV too - mainly escape to the country - also music and talking books.

    Thank you again and take care

    Saz xx

  • There is a grant you can file for that pays up to a $1000.00 for me to have someone come in a watch after bev when I have something to do like shoping or just need some time to my self it is called Elvirita Lewis Respite Program the phone number is 775-358-2322 they will send you an aplication to fill out hope this helps

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