Feeling lost

My mum was diagnosed with psp a year ago but in the last 2 months I have lost more of her each day her memory and movement is almost non existant and gets worse daily to the point today she was in the wc and asked how to go for a wee. I am her full time carer which I feel I am failing at as I cant make her better and repeating the instructions of how to turn around to sit down or use the toilet is frustrating. I am feeling lost coping with this horrible disease I do not know where to turn to.

12 Replies

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  • You sound as though your are hitting the wall which all of us carers hit on a regular basis. Do not beat yourself up try to do a little of something for yourself.even if it is only a coffee and biscuit.

    Has the GP organised any help for your mum such as OT (occupational therapy) physiotherapist, referred her to the speech therapist service. If not get her GP to do a home visit and explain the situation concerning lose of cognitive effects i.e. not being able to work out how to do things such as the loo are all usual effects of PSP. You need to get time off get your mum's GP to refer your mum for assessment for daycare at a local hospice or local authority social service.

    That is another thought has your mum been referred to your local government adult services, they will be able to assist you.

    Read some of Kevin1's posts concerning starting the CHC funding request for your mum. She has a progressive terminal condition so is eligible. If not already in receipt of benefits such as PIP if your mum under65 or Attendance allowance if older. Once she has this you can claim Carers allowance get help from CAB or local authority welfare rights section.

    PSP is a horrible condition that does not get better you are in for some bad times but this site is where you have friends who have been there and can offer help or a virtual shoulder to cry on.

    Best wishes Tim

  • Thank you for your kind words Tim . We have got some things sorted Attendance allowance and carers allowance and been referred to OT but not for speech therapy and she has been for assessment at local hospice where they did a CHC questionaire and we are not eligible as yet . My mum is 75 and set on her ways so doesn't like the idea of outside carers or daycare and I feel guilty if I try to push the idea .

    I have booked mum in to see the GP on Wednesday so will try and talk to him re cognitive loss .

    Thank you for your reply

    Sophie

  • Sounds as though you have the basics in place, but keep pushing the CHC, especially if her care needs are increasing. If you have not arranged Powers of Attorney it should be arranged while she can still be understood a POA can be put in place early and let lie until needed. Get both types finance needed during middle stage of PSP while health and care one is for later stages.

    Your mum is normal in not accepting the loss of functionality that PSP robs. She may not want carers but she needs to understand that you cannot do everything and she is no longer to care for herself all the time.

    You will feel guilty in pushing your mums care needs it is natural but if you don't you will breakdown and the care needs will be forced on her. It happened to me when my wife had a bad fall and badly broke her arm, the District Nurse visited to check on her arm sling and blew the whistle and within a day we had carers 4 times a day and DN daily visits, it was a shock not only to M but also to me. I had no idea how tired I had got.

    If you haven't already try getting in contact with PSPA they can provide information and a support worker to visit you and your mum to help you both. Also the group meetings can be good social contact..

    Good luck Tim

  • I really feel for you Sophie,

    I know exactly what you mean when you say you're loosing a bit more of your mum each day ! I too feel this and it literally breaks me. Please get the ball rolling with help . Lovely people on this site have pointed me in the right direction of what to do also and this week I have touched base with mums Dr who is organising assessment for CHC . I believe we have to fight for this but I know you'll agree .. Our loved ones are worth fighting for again and again! And I would do anything to help mum. You are not on your own .. I'm sending you huge hugs and loving vibes . 🙏❤️

  • Yes! My husband as well said he could not remember how to go ! Well I am glad you have turned here though most of us have seemingly have an answer....we all feel like you Sophiejo! I just read Amilazy's post and I agree with everything he said....thoug im here in the US foollowing the procedures of CHC will help you and your mum ....do not go it alone...! You should be able to qualify for everything though it does sound like you folks really have to work for it...So don't stop telling people what you need....Speaking of beseeching others to your mums need, I want to implore upon you the need to ask God for strength and guidance. Like I said dont go it alone. You must take care of yourself both physically and emotionally and spiritually...I will leave you with some verses that are meant to provide comfort

    AVB

    Wait on the Lord: be of good courage, and he shall strengthen thine heart: wait I say, on the Lord. Psalm 27:14

    Come unto me all ye that labor and are heavy laden, and I will give you rest. Matthew 11:28

  • Thank you

  • You have come to right place. You can express your fears and frustrations and doubts. We all have them .Do not feel that you are failing because you can not make her better. Your being there is the most amazing gift a person can give. We all get burned out an question ourselves at times when we loose patience. Prayers for both of you and hugs.

  • Thank you for your kind words

  • Hello.

    I agree that it is really wearing to have to continually give a running commentary on what is happening but we all have to do it. Seeing the deterioration is heartbreaking. What really wears you without realising, as Tim says, is the tiredness and lack of personal space. You can do something about that.

    Good luck,

    love, Jean x

  • Thank you Jean for your kind words - I am tired and have no personal space ( it's hard even to get a 5 minute shower in peace ) at all I feel tied to the house with mum and panic and feel guilty for leaving her even when I have to go and pick my children up from school and nursery . I need to get better at asking for help but it's not something I'm used to .

    Sophie

  • PSP definitely causes incontinent issues, for both men and women. For my wife, she could rarely go on her own on the toilet, but would go without knowing it in her pull-ups. A urologist taught me how to catheterize her, in order to empty her bladder on the toilet. I would usually do it somewhere between 5 and 7 times a day. Once you do it a few times, it's like riding a bike. Felt like I could do it with my eyes closed and one hand tied behind my back. (I never did really try doing that).

    Hang in there! I hate to say it, but it only gets worse. God bless you!

    Ketchupman

  • Thank you

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