PSP Association

Support needed

Hi I have signed up to this as need support. My 84 year old mum has PSP and I am finding it very difficult. Over the past 3 weeks there has been a big deteriation. She had another fall and had an impacted bowel. I'm not coping with watching my mum in distress and wasting away. I have recently got two electric stand aids to get her from bed into the lounge and back to bed at night. This is a horrible illness. Just pray she goes to bed and sleeps away to stop her suffering

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We are here!!! You will be able to find the strength. We are here to help. Lay it on us - what do you need? It is horrible. I'm not one of the great speakers on here.... They'll show up and let you know we are going to get you through💗

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It's Ok to pray the prayer ~ I pray it, too ~ I pray my husband will check out early and dodge some of what's on the next page for him ( and selfishly, our family) . I'm tired of missing out on our lives and afraid of the future. And right now, I think I have it easy compared to so many. This group keeps me going - I know I will find what information I need and the assurance I will need when I need it most.

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Not sure what I need - just struggling with losing mum and watching her suffer, its so degrading for her.

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I understand this completely ... I feel the exact same ... so awful watching my beautiful kind mum struggle ... she has just said to me now ..” I just want my life back”

Jude xxx

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Gill please feel free to tell us your Mum's story. At present it is also your story? A lot of us have been where you are. We have survived though although it has been, and even now can be a very hard journey.

How long ago was your Mum diagnosed? Do you have any help? What kind of help? If you are in the UK there is no need for you to buy aids for your Mum as they will be provided for you. Let us know a bit more about your situation. We will help you get through this.

Marie x

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Mum was diagnosed approx 4 years ago. She doesnt know diagnosis apart from parkinism. She was managing to 'walk' with help to the toilet but fell 3 weeks ago. She has no recollection. Since then she has deteriorated. Usually if uti she recovers quickly but has has impacted bowel which is now cleared but seems to be getting worse. Carers are excellent but struggling with transfer's. Still waiting for 2nd stand aid for down stairs which should help. My support is God and friends but just pray she will be taken in sleep. My dad is not coping eother he is losing his wife of 60years

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Gill you need to keep an eye on her bowels. Give her some Lactose. You can get it from her GP. The GP will advise how much and how often but I know people keep an eye on things and adjust the dose themselves.

If she has carers how did she fall? Do they understand about PSP? You need to print out the symptoms from the PSPA site and let them read it. It is very important they understand she needs two carers to help her at all times. I take it she is being double handled? If not she needs to be. One of the things my husband did was plonk himself down on the toilet and the chair! So make sure they know she might do that too?

Have you got a Community Matron? An OT? A Social Worker? Some people have Neuro Nurses but we were never offered one. We did have a Parkinson's nurse who wasn't any good sadly.

Have you been in contact with your Hospice? They will help you even now you know with counselling and advice. They will also help your Dad with counselling. I know men are not great at talking about feelings but maybe you can get him there under some pretext or get some of their leaflets and give him the counselling one to read. You need to tell him how important he us to your Mum.

Your Mum could go there for lunch once a week. It's a break for you and your Dad? My husband didn't want to go but I persuaded him to go for one day to try it. He came back beaming from ear to ear! He even made some friends there. They only let you do this for a fixed amount of time though. Check it with them.

You can ask them about aids too. My husband had one downstairs and one upstairs which they sorted out for me. They also leant us a chair as he started to struggle to sit on the settee. There are all sorts of things they can help with.

Has your Mum been seen by the SALT person for her speech? If not you need to contact him/her. They are based at your local hospital. Your GP should be visiting regularly too.

Maybe your Dad needs an antidepressant? Maybe you do too? I decided not to have any but everyone is different and some people find they help.

Enough of me for now but please contact your local OT and if you don't have one contact the doctor and ask for one. Then the SALT team. Ask them to visit your Mum at home when you are there? Anything else you are confused about or are not getting come back to us?

When your Mum gets very bad she is entitled to CHC funding. In fact she might be entitled to it now. You need your social worker and Community Matron to help with that.

Lots of hugs and you are not alone.

Marie x

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Thank you. The OT i's coming up tuesday to assess for a free wheeler chair which would help. I will ask you about speech therapy. Every morning I wake up hoping a phone call says she's passed. I feel guilty but if she were an animal I would be done for cruelty leaving it to suffer, but my mum has to.

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What is CHC funding?

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CHC funding is NHS Community funding for England and Wales. It's not means tested, but one has to get through a stiffly scored set of criteria.

Download the free tool kit on the right hand side in this link

beaconchc.co.uk/what-is-nhs...

Social Care Funding is means tested and is managed by Social Services. Self referrals accepted.

My mistake was not getting a lot of support in early. I was shattered and exhausted before we got home care in. Please, look after yourself too. Without ou the house of cards will collapse.

Best wishes

Kevin

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I live in Scotland so that's why I hadn't heard of it!

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Yes, Scotland has a different system.

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Gill if you do apply for CHC funding get help with application. The Hospice helped us with Mums and was present at Mums home when the assessors came round to the house. She didn’t qualify for it the first time but did the second time. It means her carers are paid for and if she ends up in a home she will get at least some of it paid for. My Mum has been diagnosed for just over three years but had very early symptoms since 2010. The prayer to find them died in their sleep is u derstandable but I don’t think it happens like that very often worst luck. Love Steph x

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Don't feel bad about your thoughts. I too think this way concerning my brother, he is 67. Absolutely no quality of life, only suffering!! Wouldn't wish this life for anyone, man or beast!! Hang in there best you can and look to this site for valuable insight and support!!!

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It is so very hard,but God will be with you helping you through this. My husband just pasted away Dec. 28. Hospice was here and helped with the pain. Filled with a lot of mixed feelings now.

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Welcome to our site. You have just found a whole new family you didn't know existed. We all know how you feel and wish we had the answers. Unfortunately, as you are well aware, nobody does.

We will support you. Tell us your story, your worries, or just cry on our shoulders. Some will be able to advise you on what happens where you walk your dog. The rest of us will listen to your concerns, dry your tears. Nobody judges, all too busy feeling exactly the same.

PSP, is an evil disease. It affects the whole family. You will cope, mainly because there is no other choice. The very fact, that you have found this site, shows you are not going to go down, without a fight.

So, head up, smile and take one day at a time.

Sending big hug and much love

Lots of love

Anne

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Psp is the most horrible illness going, the journey has been really hard, without these lovely people on here, I don’t know what I would of done, would like to thank you all for being there xxxx

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Hi,

It is a very cruel disease.

I find that I am very strong when I’m visiting my dad at his nursing home.

However, the only time I cry is when I read the comments on this post as then I realise how cruel and real the disease it. I think I shut it all away when I’m with my dad.

The other day my dad was sat with a wet paper towel over his eyes, I had been told by the staff the optician had seen him that morning and said his left eye was blurred. When I tried to get any communication from him he said his eye “burned” so I had to change the words to “sting” or “blurred”.

He said “sting”.

I told the staff and they said they’d sort out his eye drops.

Thank goodness that I called to visit him that day. I wonder how many other words they don’t hear him say.

X

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Hi Gill!

So far PSP is a disease without pharmacological treatment yet. The only thing you can do is counteract the symptoms.

Bearing in mind that Parkinsonian patients become significantly more fatigued (parallel to disease progression) for the same activities than those not sick, then they requires more frequent rest periods.

Palliative medication against depression and insomnia. In our case right now: 1/2 Sertraline-50 at breakfast; 1/2 Sertraline-50 to lunch time; 1 Lorazepan-1mg one hour before dinner. Of course all these drugs were prescribed by a physician.

Recently she pay close attention after dinner to a light TV show. Surprisingly this activity has significantly improved her relaxation and rest at night.

She have had some episodes of constipation that have been corrected by applying an intensive Mediterranean diet based in fruits and vegetables, abundant liquids and helped by the drug "Duphalac" (an oral osmotic laxative).

Drops of artificial tears to the eyes or physiological serum upon request (more often as the disease progresses). If you have problems applying the drops "Optrex spray" is an alternative.

Reproducing the phrase of Anne-Heady (active participant in PSP-HealthUnlocked):

"Never forget to get plenty of rest, ask for help and most of all "ditch the guilt!"

I hope and I wish these notes are useful.

Luis

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Hi Gill,

It's a good thing you've found us! You aren't walking this difficult path, we are all right here with you.

Marie and Luis have given you some great practical advice and there is a lot more to be found on this site. But I think maybe you might need some emotional support and tips too?

The PSP journey is a bit of a marathon, I'm afraid. It takes years and it's important that you try and find some coping mechanisms to get you through. Try and take some time out for yourself. Easier said than done, I know, and there's also often guilt about being away, even for a few hours and 'having fun' but it's so important to look after yourself too, so you can be there for your Mom. I found meditation was helpful for me. I downloaded an app on my phone (there are loads out there), and the 10 minutes or so I would use it for every say would help calm my frazzled nerves and help me find that little extra bit of strength to carry on. Are you and your Dad talking to anyone? I didn't see a psychologist although it was recommended. But my cousin is a doctor and she was great support. And when we found a palliative care specialist towards the end, it was very helpful being able to talk to her.

Good luck! You and your family are in a very tough situation. But you will get through it, as have many of us. We're all here for you.

Hugs

Sharon

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Welcome to the site no one really wants to join but a site that is a life saver for carers. So much love and support here and of course wonderful advice from experts those who have walked this path.

Love Tippy

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Thank you and yes receiving great support

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Hi Gill - I am sorry to read your post. I feel exactly the same as you- it is so desperate to watch the person you love suffer such a horrific time. We are a good 9/10 years in and it still continues. I don’t really know what words will help so sending you love and strength xx

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It's a scary journey with no happy ending.

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The happy ending is knowing that we have each done the best for the one we love and that their suffering is over. Its not much, the journey is damned tough, but do-able, but it is so worthwhile when afterwards we look back with our hearts.

Warmly

Kevin

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Gill,

Welcome to this awesome site.

Not much I can add here that hasn't already been said by some of the bright lights on here. I am a newbie as well. Joined 6 months ago, when my wife was first DXd with PSP. I have gotten a tremendous amount of support and information from the folks on this sight. Some medical and some personal. All of it is appreciated. I hate to think that you have not had this sight for 4 years. It has helped me and my family a lot.

Warm Regards,

Dick

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My Mum is 75 also has PSP and this site is a massive help. Knowing you are not alone feeling upset , angry, exhausted etc etc. It is a difficult disease to navigate but help is available. We have found the local Hospice a huge help with so many things relating to this disease from carers support to respite care to palliative care plans and a help with applying for CHC funding and getting appliances to help with Mum’s care. You are not alone however isolated and desperate you may feel at times.

Regards

Steph x

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