Psp: Thank you all. I am a nurse and... - PSP Association

PSP Association
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Psp

Nat08
Nat08

Thank you all. I am a nurse and although im struggling nobody will care for dad like i can. I too look into his eyes and my heart melts. Its the constant grabbing he must hold on to something be it me or walls anything . This is a cruel disease. He cant sleep in a hospital bed as he throws him self off. He has to sleep on a mattress on the floor with crash mats for his own safety. All night rolling about pulling out catheter ....omg permanently washing sheets and dad im just so tired x he is well into the disease but eats so much lol x swallowing ok at moment how much worse can this disease get he has good upper strength but can no longer walk x

11 Replies
oldestnewest

Hi Nat

I missed your first post, but I have read it now.

Yes, no-one can look after a loved one as well as a caring close relative. And, with your professional skills, even more so.

I found a big difference between my job in the NHS and caring for my wife. I was on the pointy stick end of Community Mental Health Services. Though it was tough, every day I went home (sometimes in the early hours of the following day and I was not a shift worker) and the next morning I would get up, drink tea and make a short list of 'must do's' before setting off to work to start the day. Totally manageable.

Then came PSP. The emotional impact was massive. I found my functioning markedly diminished. It was very painful watching my wife deteriorate and the caring did not stop at the end of the day. I became exhausted, but still the care cannot stop - obviously. Getting carers in was a life saver for both of us. And, yes there were some dreadful agencies and carers with attitude and little care, but so too there were some superb carers.

We both know that it takes three nurses plus to cover twenty-four hour care and your Dad has full on needs as well.

Your love and committent do you proud.

Wishing you the best.

Kevin

Nat08
Nat08 in reply to Kevin_1

Thank you just having a bad day as i am tired x is ur wifestill alive ? I just need to know how much more of a deterioration am i going to see...has full capacity but can not talk or walk now with out me holding him up

Kevin_1
Kevin_1 in reply to Nat08

Hi Nat

Yes, I know the bad day thing. Miserable!

She is in a nursing home now. She can't talk and is mostly bed bound. Sometimes she's strong enough to be hoisted into a large wheeled comfy char and spend time in the garden of day room. She doesn't quite have capacity as she sometimes makes decisions which are so what she does not need. She is still very aware of the world around her and the people around her too.

She has lot an immense amount of weight despite being on a high cal. diet. BMI now 13 or 14. That is fairly common for PSP. She showed first symptoms about eight years ago.

As you know: Everyone is a little different depending on the parts of the brain affected.

Best to you

Kevin

Welcome back Kevin.

Hug.

Luis

Good to be back :)

Hugs to you Luis

Have you discussed with his doctor the poor sleeping? There may be something they can give to help him sleep better and not be so agitated. A good appetite and no swallowing issues is a big plus.

Ron

Yes I hear you it’s the most horrible desease I’ve ever seen in my whole life

Why can’t anyone help there’s so much ignorance out there we are just left alone to deal with it no one knows it’s like no one wants to know hey !

Yes no one can care like a loved one can but you must also look after yourself. You can't pour from an empty cup.

These disease are beyond cruel and heartbreaking. They are traumatic for all concerned.

Do you have any aids to help with mobility issues? Might be time to get an assessment done. The PSP association can point you in the right direction if you don't have direct contacts already set up.

Hugs x

Hi, yes nobody can look after your Dad like you can. We all agree with that! But as a nurse, you must remember, you are the most important person in his care. Therefore your needs have GOT to be top priority! The last thing your father needs is for you to collapse. As Kevin has said, it takes 3 nurses to cover a 24 hour period. In lots of dealings with him, in a hospital etc., it would take two people to handle him. If you want to carry on looking after him, you MUST get help. Sorry if this sounds a bit harsh, but my husband died 2 1/2 years ago and I still bear the scars and guilt of feeling exactly the same as you. I crashed, thankfully, my family stepped in, I was sent away for a few days and my daughter had to take time off work to look after Steve. It was extremely traumatic for both Steve and me. Neither of us ever really recovered from that. Please don't let happen to you.

Sending big hug and much love

Lots of love

Anne

You definitely need as much outside help as possible in order that you can continue to care for your dad. Ben had drop rails on his hospital bed which were fitted after he fell out of bed a couple of times and I had to call the ambulance to get him up. I'm sure there are meds to deal with his agitation, Ben didn't really get agitated unless he had a UTI. Do you get anyone to sit with him during the day to give you a break and are the hospice involved at all, they were a tremendous help for us. I really feel for you Nat, it's a tough job caring for somebody with a PSP or other related diseases, cry out for help, practical and emotional, you both deserve it.

Sending live

Kate xxx

Thank you everyone. Today i have to attend a funeral and my dad is going to respite day centre for the day ..well 3.30 but ive never looked so forward to going to a funeral...my first break in 10 weeks. This costs 40 for the day...i have little money so i think ill have to claim carers allowance in future but does this affect my dads benefits? Definately need help...he will be assessed for 2 weeks respite on tuesday ....i need a holiday xx

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