We're getting ready for dad to be discharged early next week, but had a new challenge yesterday. My mum had a small heart attack ,and is now on the ward next to my dad. She has suffered with AF for some time now, so is at high risk of heart problems/strokes. It's always brought on by stress too. Now we have the question - what will happen to dad? I'm trying to keep her calm to get her better, but this is all she can think of. I can't see any way around it other than a care home. Feeling devastated. This just isn't what we wanted for him. Which is worse, mum stressing over dad being in a care home, or stressing over looking after him?!!! Although I live around the corner, I can't be there 24/7 as I have to work and I've got two children. Feeling helpless and more than a bit lost today.
New challenges!: We're getting ready for dad... - PSP Association
New challenges!
Oh my gosh what an awful lot of stress for you to deal with. I can only imagine how distressed and upset you are. Devastated probably isn't a strong enough emotion on how your heart is feeling.
Your poor Mum and Dad.
It maybe your Dad goes into a rehab bed for a few weeks until your Mum recovers and can decide whether she can deal with your Dad at home or not as she must also look after her own health and a full care package needed. Circumstances have been taken out of your hands and all of your health need to be taken into account.
Sending you massive hugs. Hope your Mum makes a full recovery. Xx
I suspect your mum is stressing over both. Doesn't want your Dad in a home, but equally, can't look after him properly. Might be worth seeing if you can get your father into a place for respite, until your Mum is fully recovered and then re-assess the situation. With PSP, or even life in general, you never know what tomorrow will bring, don't waste time and energy, thinking in the future. Just get the problems today has thrown at you, which seem to be more than enough, sorted.
Hope your Mum recovers quickly.
Sending big hug and much love.
Lots of love
Anne
Thank you both for your calm voices of reason! I hadn't even thought of respite as a temporary solution. We're just terrified of care homes after the last experience! Had a notification yesterday that our complaint is so serious that the adult safeguarding team are being asked to supervise the home's investigation. The thought of him going back in to a home again is awful, but there really is no choice right now. One day at a time is good advice indeed - right now, I feel it's one breath at a time!! Thank you both x
Totally understandable why you would not want your darling Dad in another home and why so stressed with the whole situation.
What home was it that is suffered neglect in? One in Telford? Maybe contact the PSPA on suitable homes in area.
I know a few PSP sufferes who attend the day until with Mum have gone in for 6 weeks rehab periods at Morris Care in Wellington but don't know what is local your way as in another county area. Maybe the Hospice can advise you of suitable respite beds?
Hospice want a signature from the Palliative care team - which doesn't seem to be forthcoming from the hospital - another issue to take up with them tomorrow!
Never ending banging head against brick wall trying to get things sorted at a time you need everyone to be offering the help
Cannot give any further better advice than that already given. My heart goes out to you. Jx
I'm very sorry to hear this but sadly agree it is now time for a nursing home, the decision has been taken away from you, as it was with my Dad! I know exactly how your feeling!! Thinking of you all x
So sorry this has happened, agree with what the others have said, your mum needs to get herself well again. Sending you a massive hug. Yvonne xxxx
Thank you x
Sasmock
I am so upset for you. Just when you thought you were getting there? Have you looked up Nursing Homes on the Internet and their CQC reports? Please do that as your poor Dad had such a bad experience before. Someone suggested getting advice about ones which have dealt with PSP too. I think that is a very good idea.
Can you reassure your Mum that it is only until she is well again? She is going to struggle though as looking after someone with PSP is physically and emotionally draining. Not exactly what she needs at the moment? On the other hand she will be worried sick about your Dad and not able to ensure he is being looked after? So that won't be good for her? So again a dilemma for you? Could she go into the Nursing Home with your Dad for a while until the doctor is assured both are alright to go home? However you will have to support her as she will end up in hospital with a heart attack or stroke otherwise? I am so very sorry.
Ring the PSP Association for advice and local Nursing Homes that have dealt with PSP in your area. Also check them all out with the CQC online. You can choose your own and if CHC say no just ring the Nursing Home to see if they have EVER had a patient who had been on CHC. If the answer is yes then the CCG HAVE to fund him there!! Check it out on the internet. I wish I had known that when my husband needed a Nursing Home but I found out too late!
Lots of hugs and love to you all.
Marie x
Thanks for your lovely reply, Marie. The irony is that I did check the CQC report for the home where dad has his respite stay, and they assured me that they'd had PSP patients before, and were familiar with it. The CQC report said 'good' for 4 years running, we went and looked around, thought it was fine, but it turned in to a nightmare. I can't see any other way around it now though. Going to talk to the discharge liaison officer at the hospital in the morning and ask if she can get that signature from the palliative care team so the hospice may then accept him for at least a short stay whilst we think of next steps. Good idea about mom going in with him for respite in a home - that's something I didn't think of. Now I just need an extra 24 hours in each day to make all these phone calls, as well as earn an income! I didn't know that about the CHC funding places in a home where they've previously had PSP patients - that could be a useful tip, so thank you SO much for mentioning that.
I'm so grateful for this group! Thanks again
Sarah x
Oh yikes you are one of the millions in the "Oreo" generation....you're the good stuff in between the two cookies! (quite frankly I like the cookies better especially now that they come in vanilla)
Seriously I am so sorry that you are having to take on this decision. Is there a way that both of them could live in a nursing home? Will your mother be able to live independently? Is there a way you can get 24/7 care in the home? What is better to die together or alone?
Perhaps talking with your parents and their doctor will help you with the decision...
God Bless you, sasmock,
AVB
Sarah it is not PSP that means the CCG has to pay for the Nursing home. If they decide PSP is causing problems...and it is for your poor Dad, and now your Mum, they will have to fast track payment of CHC for your Dad.
1. Your doctor needs to get it fast tracked for you.
2. If you see a Nursing Home you like but they refuse to pay for it check with the Nursing Home (a) have they cared for PSP patients before (for your own peace of mind) and (b) if the CCG refuses to pay because it's too expensive check with the Nursing Home have they ever had a CHC patient. If the answer is yes, then the CCG have GOT to pay for him to go there. Hope that makes sense now and good luck with the GP!!
Marie x
Sounds dreadful. Sorry to hear about your situation. Are there any day programs your dad could attend to give your mom a break (assuming at least short term respite stay)? Do you have carers coming in? I know my experiences with formal community carers is variable (quality) and can be a logistical headache (coordinatibg, hoping they cone on time, etc), but...at least she'd get a bit of time to herself. Sending calm and big hugs.
Wow😐
Leaving PSP sufferers on their own
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Does anyone know or experienced an esophagus spasm due to PSP?
