PSP Association
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Crisis time

Mum having 'conversation' with invisible. Now not able to feed herself as ends up on the floor or else where. Doctors say no infections just psp progressing. Dad crying. Went to see nursing homes 1096 per week !! Dad can't afford this unless sells house. Where is quality of life for mum or dad. Mum has dnr but does that include no peg and if so then what happens. Sorry to be so negative but just want to run away.

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Don’t know if you already looked at this site. It may be a place to start.

careinfoscotland.scot/topic...

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Please don't feel you are being too negative. You are in a very hard place right now and we are all sympathetic to that. You can talk to us. That's what we are here for.

If your mother can still swallow, spoon feeding will take her a long way, but it is time consuming and requires patience. Getting help in the home is key if a nursing home isn't an option. A DNR doesn't include PEG, necessarily, so your parents' wishes on that should be made explicit. Some folks here have had good experience with PEG feeding extending a good quality of life for years. My guy stopped being able to swallow, we didn't go for a PEG, and he eventually decided to decline all food and water, and died from that. That is one way that can turn out.

I assume you are in the UK and there may be resources available to you that I don't know about. Here in the US nursing home care generally results in a debt held against any property, but it can't be claimed while the surviving spouse lives in it. I hope you are in the UK!

(Edit: I just looked at your previous post. I see you are in Scotland.)

Hang on. You will get through this. peace, ec

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Feeling so sad for you, many of us know that feeling of wanting to run away, the responsibility is overwhelming at times. If your mum is having difficulty feeding herself, is she also not drinking enough either, just wondering if her confusion is linked to dehydration? I am not surprised your dad is crying, my mum was the same, when the strain of caring for dad took its toll on her as his PSP progressed. I realise you live in Scotland and some of the things that occurred may not be relevant but perhaps if I told you what happened to us there may be very similar systems in place in Scotland, albeit with different titles?

Firstly I must say that we had, fortunately, obtained Lasting Power of Attorney for both Health and Welfare and Financial Affairs some time before dad had any symptoms and I would urge people to consider doing this in good time, as without them all affairs must proceed through the Court of Protection, in England, once capacity is lost.

The DNR as E.C. has already said is separate from the PEG. My dad and mum were advised by the doctors that it was not a good option for him as his swallow was almost the final thing to go and he had poor quality of life. So dad discounted it as an option.

In England if the home is owned 'Tenants in Common' the house cannot be sold to pay the care fees as they only own half of the house and half of the house belongs to their spouse/partner (you can't sell half a house). Unfortunately, changing the Tenancy is not possible at this late stage I don't think, as it would be seen as a deliberate act to avoid the fees. I was advised a house owned 'Jointly' can be taken into consideration when the patient's finances are means tested.

When dad was discharged from hospital in October, following swallowing issues, he had been granted Fast Track CHC, as he had experienced 'a rapid and sustained deterioration' in his condition - this was applied for by the Community Neuro Matron, (who co-ordinated the multi-disciplinary team caring for dad - SALT, OT, Parkinson's Nurse, Hospice etc) and was granted within 24 hours. With this we were able to pay for a part of the fees at a good nursing home, we did however need to pay the creatively titled 'hospitality payment' (Internet, Gym etc.) of about £250 per week.

Once in the home we had a best interests meeting, with the nursing staff and dad's GP to try to establish his care wishes - this was for the Nursing Home records only. We had assistance from the Hospice Nurse to complete an 'Advance Decision Document', which meant that dad was able to decide what he wanted and more importantly what he didn't want - no interventions or hospital admissions, even if his life was at risk. It's tricky when communication skills are deteriorating (dad couldn't talk) but it was do-able, dad got to do things his way with a lot of support and understanding. When the time came, the Hospice also assisted with end of life medication too, which was administered in the nursing home. The Hospice can also arrange for respite care to give you a vital rest.

Our Neuro Matron said to us, that at some stage we would have to consider what was best for dad but also for mum and ourselves and that we had our own health needs to consider. Some have likened this decision to the emergency drill on an aeroplane - fit your own oxygen mask first, only then help others. This may sound callous on first reading but unless you take care of yourself and your dad, you will be unable to help your mum as well as you would both wish.

You may be entitled to a Carers Assessment, to establish whether there are any services to which you are entitled, to support you and your dad in your roles as Carers, together with Attendance Allowances for both your dad and your mum, if you are looking after them both - which is not means tested in England. There may also be Carers Allowance. Age UK are excellent in advising and helping with paperwork - they will even come to your home to do this. You can register with your GP as a Carer, to alert them that you may have increased needs and you may also apply for a reduction in Council Tax, on your mum's behalf, from your Local Authority for a mental impairment such as PSP.

I would tell your GP etc that you are experiencing a crisis situation and request urgent advice and assistance from either your Social Worker or the Scottish equivalent of the English Community Neuro Matron to apply for any financial assistance your mum qualifies for and don't give up, words to remember when you are requesting assistance is that PSP is complex, unpredictable and progressive. I was told that CHC is judged on the 'nursing requirements' not social care and also that the needs must be judged as if the patient has no one to assist them with their care. I wish you all the best and hope that our experience will be of some help to you, thinking of you. Ruth x

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Beautiful and helpful, Ruth. I imagine many folks will find your reply valuable. Really well done. Ec

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Many thanks EC I really hope so, it’s pretty stark advice but forewarned is forearmed in my book and we would do a great disservice by glossing over the hard, unpalatable bits. I have been very fortunate that I have had my husband, whose own father died several years ago to guide me through the admin side and I cannot thank him enough, he has helped me to do the best I can do for both my parents, hopefully our experience will help others too. Ruth x

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Can you recommend a source for this financial information ? I keep putting it off. I've heard of people divorcing and spending his money - I've heard they can't get my own money . ---- I would have to sell our lot up north!?!?!! I would only be allowed what I needed to feed myself from Soc. Sec. Who knows the scoop?

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I may start a post!?!

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ageuk.org.uk/information-ad...

This is also a very important link. Ruth x

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Yes, why not make the question an open one? Specify that you are in the US, though. And have you talked to Social security?

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I got advice from an attorney specializing in elder law. She said I could keep something like $140, 000 ( I forget exactly), plus our house if we married. Since I was trying to protect his home for his kids, plus my house for myself, I decided we shouldn't get married. I regret that now, since I was able to keep him home after all and we never incurred any debt for nursing home care.

I think you should be able to get advice from the state agency on aging.

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ageuk.org.uk/information-ad...

This is a good place to start. This website has sections on various issues which you may find useful. They were very helpful when we contacted them, they even sent an advisor to fill in the forms to apply for attendance allowance etc. Your local council should have contact details for the Carer’s Centre in your area where you can speak to someone regarding an assessment and also how to apply for a reduction in Council Tax. A financial advisor or a solicitor would be able to assist with more complex issues to avoid making costly mistakes. Good luck. Ruth x

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On the advice of two different solicitors both specialising in estate planning we changed our ownership to tenants in common last July . I was assured this can be done at late stage of illness as long as husband could make a mark on the papers . He just about managed a mark !!! The powers that be can only touch his half. Apparently , so I'm told this is the only way once illness is diagnosed that one can protect any assets at all. I was also advised to separate our joint bank account.

I'm hoping I was advised correctly !!

GW xx

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Yes GW, it is very important for information and advice to be given in ample time to enable patients to make informed decisions regarding their health care and financial affairs. PSP can be very unpredictable and using the law and regulations may be the only way to ensure our loved ones wishes are fulfilled before they lose the ability to speak for themselves effectively. 🤞all is well for you both. Ruth x

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As soon as diagnosed you need to agree on your wishes about " end of life "

The hospice talked this through. So we discussed PEG and DNR at an early stage. He made an " end of life " plan with the hospice. This was so useful at the end stages when Chris could no longer communicate.

Also POA . In fact it was never used but needs to be done.

Talk about funerals and endings if you can. Do things you want to do whilst you can. Record the loved one.

Jean x

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Thanks, EC🙂

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