Where to start ?

Hi my mum who is 75yrs old was diagnosed with psp just over a year ago but I think looking back she has had the symptoms for a number of years. Since diagnosis gp and neuro have said get care package in place before you hit crisis point well we didn't and at the beginning of August she declined dramatically where I had to physically push her up the stairs to get her to bed ( where she stayed for 2weeks ) she would eat sparingly , Incontinence or frequency of needing to wee became more of an issue ( up 7 times during the night and still the odd wet bed ) and I didn't know where to turn. I am her full time carer and I live with mum with my 2 children aged 3 & 9 it was a nightmare. I rang social services and once I had been directed to the correct team we have had visits from ot who are looking at putting a ramp and grab rails at the front door to the drive so I can get mum in and out of the house easier and the DN have arranaged hospital type bed with pressure mattress etc and luckily mum had been referred to our local hospice Loros for pain management and when I called to say she couldn't make the appointment and explained the dramatic downturn in her they managed to admit her for an assessment. As soon as she got there she changed and could walk with a frame and eat etc all of which she couldn't do at home ? While in the hospice she was assessed for CHC but we were not eligible. She has been home now for just over 4 weeks and things are settled a little apart from the bed wetting but we have had nothing from anyone i.e. No contact from hospice , DN or anyone is this normal ? How did you arrange a carer ( we have to pay for our own as mum has savings ) I do not know where to start with it all and how to get my mum to agree to having a carer . How often can our loved ones go into hospice for respite ? I have LPA but not the medical how do I get this ? Mum has already said to our GP she wants a DNR in place and I have this at home does this need to be with anyone else ?

I have lots of other questions and don't know what to do next .

Sophiejo

9 Replies

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  • All I can say is that you will get through this...you keep fighting for her needs....Kevin 1 is a great resource for forms and laws(?) I am in US so cannot help you with that stuff....Let me tell you for whatever reason , my husband especially in the beginning was able to perk up and show his best side that he never showed for me...Articulation, answering questions in a prompt manner, even walking....It was like he was just doing this to me!!! but then I red on here other carers experiencing the same thing with their loved ones!!!! Let me just help you with some ideas: You probably already have these in line but...

    Get several sets of sheets

    theres wonderful pads you put on bed that can absorb leakage and be thrown away though I also have one that can be washed and reused.

    Make sure everything that she could get hurt on is removed....Make sure kids toys are out of the way...Make it a habit of the kids to put it back...even the three year tell them why it is important so they feel like they are helping grandma not get hurt

    She is 75 has issues of age already against her....Her bladder may just need a catheter...fight for the assessment in this area.

    Stimulate her physically by massages if she is in bed...make sure she is off the same spot to prevent bed sores.....exercise her legs , bend knees back and forth if she can sit, get a ...pedal machine...it is only 40 to 50 American dollars so not expensive but it will help circulation etc.

    If you have time or better yet have 9 year old have read time with grandma....books their age are just as stimulating as more age appropriate ....your grandchild reading to you? its like candy!!! Sweet and wonderful!

    In essence , make sure mum is safe and comfortable with some stimulation from exercise and grandkids

    Now for you !

    Fight for CHC...NHS again im just an american so don't know this stuff...I do know we had to fight for B, my husbands stuff....

    Take time for your own self.....not an easy task with babies and old people...get help...if you go to church do not be afraid to ask for some help!!!! We got a beautiful 36 foot ramp...... (12M + or - ) .from a church who engaged teenagers in area missions...took them about 4 to 6 weeks? but they had a blast and it is a wonderful blessing....

    Take walks with just yuor kids spend time with them I know you do...but some times you can get so bogged down and depressed and angry without meaning it...we have all been there!!! ie, set PSP somewhere on a shelf and just take time for you and your kids...no PSP allowed!

    If you are a praying person, then do it ....you have lots on the table to worry about ,,,,don't think you have to do it alone....God is with you when you call upon Him....and with that I will leave you with a few verses from the book I get soooo much comfort from...God bless and welcome to this family, We are hear for you!

    AVB

    The Lord is my rock, and my fortress, and my deliverer; My God my strength, in whom I will trust ; my buckler, and my the horn of my salvation, and my high tower. Psalm 18:2

    Come unto me all ye that labour and are heavy laden. and I will give you rest. Galatians 6:9

  • Sorry it was so long...I just noticed I have written once before a greeting letter.....I'm glad you came back.....keep fighting the good fight

    AVB

  • No not too long it's all good advice xx

  • :)

  • Oh dear Sophie jo, 2 children and your dear mum. You must be worn out. You have to keep badgering your GP to refer you for different services and assessments. It sounds like you will need a chair lift very soon if you don't already have one, unless your mum can sleep downstairs. Get pads from the incontinence people, but keep using the word distressing, medics seem to love it and respond well to it. Stupid really. Go back to Whoever did your LPA and ask them to get the whole thing for you. It makes life easier and you can then fight your mother's corner with confidence, and quietly but firmly take no nonsense. It's hard if you're not that kind of person but PSP will soon change your attitude to everything. Good luck

  • Thank you for your advice and kind words - yes I am worn out but I will have to put my big girl pants on and start to get a grip on what's what !

    Thanks again

    Sophiexx

  • Sorry to hear of the downturn but PSP is like that. Read Kevin1 posts on CHC your mum is entitled appeal and use the worst days not 'normal' ones.

    Good luck you need help before PSP overwhelms you and harms your children.

    Tim

  • It seems to vary according to where you live.

    For me the first call I make is to the neurological team and the matron then arranges for appropriate help. Have you seen an incontinence nurse ? Ours is good. Next I would call G.P. I also have contact with hospice.

    Our hospice offer a weekly session and Chris has respite stay every 6 months for a week.

    Generally I have learned that if something you have expected doesn't happen then you have to chase it. Be clear what you want or expect.

    Be prepared to be insistent.

    Good luck, love, Jean x

  • Thank you for taking the time to write

    I spoke to the GP last week and he referred mum to the Incontinence team and the community matron but as yet I haven't heard anything . If I haven't heard by Tuesday next week I'll call the GP to find out what's going on.

    The other trouble I have is getting mum to agree to careers or hospice some days she is open to it and others if I so much as mention it I pay for it in the change of mood and she refuses to drink / eat etc :(

    I spoke with jules at the PSPA helpline yesterday for the first time and it's great to know there is support out there other than family

    Thank you again for your kind words and advice

    Sophiexx

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