Condition getting worse, fast

[Redjune1]

I really don’t know what to do. My husband has deteriorated in the last week, he’s had two falls and I wasn’t able to get him up, he’s struggling to get in and out of bed now and again I struggle to help him, he’s confused and is wetting himself a lot. I just don’t know how I can cope with him as he gets worse, I literally have to help him with everything but he is a foot taller than me and is 17 stone. I don’t know where to turn. What happens when you can no longer look after someone at home? We certainly haven’t got enough money to pay for a care home.

[Kasenda]

Dear Redjune, please get in touch with the adult social services and get a financial assessment by them. You will only have to contribute if your husband income is over a certain amount. This is to get help at home or a nursing home. You must look after yourself too. I have learned the hard way trying to keep my husband at home as long as possible and this year I have had to admit defeat as it’s affected my health badly. He is now in the Nursing home and I visit him daily and it works well for us both as he is also being looked after well. All the best to you.

[Redjune1 in reply to Kasenda]

Thank you Kasenda.

[AnneandChris]

Hello there

Firstly I'm sorry to read that you both are having to deal with this horrid disease.

Secondly, this all sounds so familiar. I too was a foot shorter than my darling husband. I had to call out paramedics on many occasions after falls where Chris had either incurred blood injuries or I couldn't get him up. Something not so feasible now with the service so hard pushed. My OT supplied me with a Manger ELK which allowed me to get him up unassisted.

If you haven't already had one ask your GP for OT and physios to come out to assess your husband. They will then supply any equipment needed to make life easier. This included additional handrails for the bed, then a hospital bed when needed, commode chair, Sara Steady to assist with standing up. etc. etc. Wheelchairs can also be supplied.

With regard to incontinence, the District Nurses, who used to come in to dress wounds, prescribed the use of a Conveen which was invaluable. This is an external catheter and the trick, particularly with a tall man, is to get ones with a longer tube which reduces the risk of it pulling off.

As far as funding is concerned the GP and or District Nurses can help by applying for CHC funding from the NHS. This is not means tested and is available to patients with life limiting conditions. It can be a bit of a post code lottery, but if you don't apply too early, your application should be accepted. This is then used to fund carers at home or in a nursing home.

Whilst your husband is still able to talk, please discuss with him and your GP what he wants to happen. I know this sounds daunting, but it really does help as various documents can be prepared like an Advance Notice.

We were fortunate, Chris wanted to stay at home and as we downsized to a bungalow, this was possible. We were blessed to have a wonderful GP, super District Nurses and a team of lovely carers.

I do hope this will help you. Please do not forget to look after yourself, you need to keep fit and well. Keep on keeping on, it's a tough journey.

Sending huge hugs

Anne

[WifeLilyRose]

I totally agree with everything Anne writes. You must get your husband’s needs assessed and get all the help you can get. For example, are you getting a carer’s allowance and your husband, attendance allowance? The local carers’ support group helped me here. And the PSP Association are at the end of a telephone, giving great advice.

Your husband’s GP should be actively supporting both of you and I found the palliative care team from our local hospice were wonderful. My husband was at home right up until the day before he died ( he died very peacefully in the hospice which was the best thing for me. I could just be there for him right up until the end, as his wife. ) Together with my daughter, I had to fight to get CHC Funding, which was fast tracked. We had to find out all about it ourselves, like a lot of other things, on the PSP journey but it’s made us both strong and very aware that we were my husband’s advocates. We applied for Power of Attorney over a year before Paul died and the hospice outreach nurse helped us to have the difficult conversation about where he wanted to die, DNR, refusing a PEG etc and we drew up an advanced care plan with him while he was still able to speak and did everything we could to carry out his wishes. He never really lost cognition until the last week of his life, which is the very cruel part of PSP.

I realise that I’ve written a lot but I do hope it is helpful. I very much want to be able to help other carers through this totally exhausting, desperately sad journey as I now work my way through the grieving process. Sending support and best wishes to you. You MUST look after your own health. Susanne x

[Redjune1 in reply to WifeLilyRose]

My husband has got attendance allowance but that’s the only thing we qualify for. I’ve got lasting power of attorney too. I also get help from the carers support service who are brilliant.

What is CHC funding? I don’t know if I’ve heard of that.

[WifeLilyRose in reply to Redjune1]

I would speak to the PSPA and the carers’ support service if I was you. It is very much a postcode lottery, I think. The condition has to be terminal ( and progressive, I think ) and is reviewed after 3 months, assuming the patient will have then died, I guess. Lots of info online. Good luck.

[AJK2001]

I agree with Anne & Susanne, get your GP on board and ask for OT assessment to enable you to get aids to make life easier. And have those difficult conversations, it horrible but makes things much easier later.

There are 2 levels of Attendance Allowance, is your husband getting the higher one? Have you looked at getting your council tax reduced? If there are two adults in a home and one is mentally impaired (which your husband is with PSP) you can get a 25% reduction. Age UK are really helpful in helping you apply for allowances and remember when filling in forms it's the worse days you think about.

Do you have any help? Even getting carers in a couple of times a week to help your husband with a shower would give you a little break.

My Mum lived in sheltered housing with an on site manager 24/7 . I visited every day and she had carers 4 times a day. She was able to stay at home until the end. A care home is not inevitable.

It can feel like hard work to find out about what you are entitled to and get things in place, but it's worth plugging away at it.



[ErinKH]

We are in the United States. My mom is in a nursing home (we had to get her on Medicaid) due to safety issues at home and a lack of in home nursing. A few months ago, we had her evaluated for hospice. It has helped so much with her cares as the nursing home is also short staffed. A CNA and a RN visit her 3 times a week. Hospice also provides a mental health therapist, music therapy and spiritual therapy. If hospice is available where you leave, please reach out. They work with you in your home as well.

[easterncedar]

Hello, Redjune. I see you’re in the UK, so I have no practical advice for you. I am sorry. Hospice here in Maine was very helpful to us when things began to become impossible.

I hope you can find help. You must be exhausted. You might look into having a catheter, permanent or not, to deal with the incontinence, if pads and diapers aren’t enough.

good luck and better times, ec

[littlin]

Hi Redjune, firstly I am so sorry to hear about your LO & how much you are struggling. It is such a resounding story & everyone here will completely understand.

You have been given some great advice from everyone & it is very daunting & hard trying to sort everything out but really needs to be done.

I am very lucky as we have a wonderful Specialist Neuro nurse & her team are wonderful in supporting us. Our doctor is not great neither our DN as they do not unstand CBD.

You need to contact your Social Services & hopefully you will get assigned a Social Worker & an OT.. They will do a financial assessment on your husband. Apply for Attendance Allowance & Council Tax rebate.

Try & get all your things in order such as LPA & your husbands wishes as this will help give you some peace of mind. If you have family or a good friend get them to help you. My friends have been invaluable.

Lastly I completely understand the height difference my husband is 5ft 10 & I'm 4ft 9. Keep going you are doing a wonderful job!

sending love & hugs