What's best for mum without upsetting dad.

[Minniemuffin]

My mum was wrongly diagnosed with Parkinson's 6 yrs ago and last December the neurologist said it was more likely to be p.s.p. Dad has gone from being a man who was waited on hand and foot to being a full time carer for mum, he has done an absoulutly fantastic job and I am so so proud of him but as mum has got worse he is really struggling to cope although will not admit it. Myself and my sis inlaw try to help as much as we can but are now both finding it increasingly difficult to manage mum, she has no mobility now, finds swallowing difficult and her speech is as good as gone, it is breaking my heart to see them both suffering in their own different ways. We have arranged for social services to come to the house this Thursday to assess mum and discuss care plans etc, I want to go and have a talk with my dad before hand but he is such a proud man and I know he will think that we think he's not looking after mum properly, which is not the case, we just want the best for both of them, has anyone had to have a conversation like this, where do I start ?? Mm.x

[Patriciapmr]

Hi,

Before I say anything else I want you to know that you have done the best possible thing by joining this site, you will get lots of support from really lovely people who understand what you are going through and won't ever judge you.

I am a full time carer for my husband who was diagnosed with PSP last year after also being misdiagnosed with Parkinson's Disease, this is apparently very common in most PSP sufferers as the early symptoms are very similar.

I also struggled to come to terms with the fact that I needed help, I couldn't possibly manage on my own, I felt all the usual feelings of guilt and was really uncomfortable in the beginning of having to accept help.

It must be even worse for a man as they have always been the strong protector and having to admit they need help must be really difficult!

Sit your Dad down and try to explain to him that he needs to keep strong and healthy to be able to look after your Mum and in order to do that he must accept all the help that is available. In the end it will be best for both your Mum and Dad's wellbeing, if he overdoes it and ends up ill himself where would your Mum be?

It's a difficult one I know, we all want to cope on our own and do our best for our partner but sometimes it's just not possible and we have to accept help or we wouldn't be doing ourselves or the sufferer any favours!

Good luck with talking to your Dad, perhaps show him some of the posts on this site and he may understand better?

Sending you love and best wishes....Pat

[Hidden in reply to Patriciapmr]

That was wonderful advice, Pat! And very well put.

[Minniemuffin in reply to Patriciapmr]

Thanks for the advice Pat, you are right this is a fantastic site, just wish I had found it earlier. I am going to see dad tomorrow and will be taking my I pad with me as I think it will be good for dad to read the views and thoughts of all you amazing people who care for their partners he will see then that it's not admitting defeat if he takes a little help. Xx.mm

[Patriciapmr in reply to Minniemuffin]

How did it go today with your Dad? xx

[Minniemuffin in reply to Patriciapmr]

Hi Pat, a bit hard going but he's still adement he can cope with mum at home, however he has agreed to 2 days a week for mum at a local day care centre as long as she enjoys it and is happy to go .we had a lovely o.t come out to assess mums needs and she is sorting out a shower chair, commode on wheels etc, so I think we're getting there...slowly !!!!xx

[Patriciapmr in reply to Minniemuffin]

Good to hear, it will take your Dad some adjusting to but it will help them both in the end!

Pat....xx

[Hidden]

MM, sorry for your situation. Pat just gave you the best advice possible. Definitely speak to your dad beforehand. Best wishes.

Jeannie

[Minniemuffin in reply to Hidden]

Thank you Jeanie. X

[jillannf6]

YES MM PLEASE ACCEPT ALL THE HELP THA TIS GOING FOR FREE!

REGARDLESS OF THEIR INCOEM THEY ARE ENTITLED TO OT /SPEECH THERAPY/CONTINENCE ADVICE/ PHYSIO/SOCIAL SERVICES ETCETC I GOT ALL THESE WHEN FIRST DXD 4 AND HALF YEARS AGO AND THEY HAVE BEEN V GOOD )ALTHO I DO HAVE OT RE=REFER MUYSELF EACH TIME) AN D A SOCIAL WORKER IS NTO "ASSIGNED"TO YOU ANY MORE - THE SERVICE IS TOO STRETCHED

BUT YOU SHOUDL ALSO BE ABLE OT GET OSEM BENEFITS FOR YOUR MOTHER - IT HAS ALL CHANGED RECENTLY AND THE SOCIAL OWRKER SHOUDL BE ABLE TO TELL YOU WHAT IS WHAT WIHT THAT TOO

SO GOOD LUCK AND KEEP TALKING TO YOUR DAD

LOL JILL

PSP PERSON IN HTE UK

[Minniemuffin in reply to jillannf6]

Thank you Jillann. X

[Amilazy]

Hi minniemuffin

I am in your dad's position my wife has no independent mobility, swallow gone so fed by stomach tube (PEG), no speech other than uncoordinated moans. My sons live over 100 miles away but help as much as they can. I was totally independent of helpers until Margaret broke her arm in a fall 9 months ago. That unleashed the NHS, carers came in twice a day to dress and undress, district nurses daily to check on her, GP started visiting, unheard of before, and social services OT came and organised for adaptations to assist in M's care. I had no choice and felt almost pushed out but a nurse sat me down with my sons and explained that the care provision was to help me and keep me fit to continue doing most of Margaret's care. The carers etc still occasionally makes me feel guilty but I now realise how right the nurse was. Your dad is doing a great job but he needs to look after himself so he can look after your mum for as long as possible. Do it in a planned way now rather than the way it started for us which was very stressful to both of us.

If they offer respite care (time out for your dad), take it, I had a real guilt trip (see my post in May and Nana's reply) only 5 days but I recharged my batteries and Margaret is looking forward to returning in mid July.

Best wishes and hope your dad understands. Tim

[Minniemuffin in reply to Amilazy]

Thanks Tim, I am going to show your message to dad tomorrow. X

[Amilazy in reply to Minniemuffin]

No snags please show all the messages, it was difficult to accept that I was not superman and that I needed help. But one bit of light relief from the nurse who sat me down to explain the situation she said "superman cannot be all that good as he wears his underpants outside his pants". I now accept anything that they offer as it does help. I agree with opope enquire about getting assessed for NHS Continuing Care, it is financially very useful. Best wishes Tim

[Minniemuffin in reply to Amilazy]

Thanks. X

[Opope]

Well put Patricia.

Minnimuffin

I, like you went through the same thing. My mum was diagnosed with vascular dementia about 4years ago after having a number of unexplained falls and losing partial use of her left hand and leg. It was brought about by mini strokes. My mum started to deteriorate over the years and it was always put down to the Dementia.

Dad became mums main carer and like your dad was doing an amazing job. But we started noticing he wasnt caring for himself properly and it was getting harder and harder for him as mums mobility worsened.

We got help from the social services ie we moved mum downstairs and we were provided with a hospital bed, grab rails, a raising chair etc Carers were brought in aswell.

Dad felt so uncomfortable with the carers as he's a very private man but we insisted it was best for them both.

In December mum took ill and was rushed into hospital with pneumonia. Her swallowing had declined and this is how she contracted pnuemonia. By now mum could barely speak and was completely immobile. She was in hospital for 10 weeks and it was there that she was seen by a nuerologist who specialised in PSP and she was finally diagnosed. She was at the latter stages of the illness.

We were fortunate to have an amazing social worker who pushed the hospital to assess mum for NHS continued care. This is not means tested so if you qualify for it all care is free. Luckily mum qualified for full NHS care. Mum came home for 2weeks but our consultant advised a nursing home. She went to the most amazing nursing home it was a home from home and mum was looked after and received everything she needed. Mum sadly passed away on 19th April with us all at her bedside.

Minnimuffin

I tell you my story not to worry you or sadden you but to emphasis a few things.

your mum and dad need all the help you can get. Sit with your dad and explain he wont be able to do it without help he's not Superman and it will get harder and harder. Tell him he needs looking after as well and if he isnt 100% he cant help your mum.

ask about NHS continued care

I don't know if your parents live in a house, if they do then please think about the future and your mums mobility which may worsen. Think about adaptions you can make ie a stairlift or moving mum and dad downstairs. My parents live in east london and the social services adaption team were extremely helpful.

The one thing I'm glad I dud when mum was diagnosed was to find this site. It and the people on it are amazing.

Good luck and I hope this has helped

Opope

[Minniemuffin in reply to Opope]

Firstly can I say sorry for your loss and secondly how lovely it is that you are still on site offering your help and advice to others. Reading your reply has been very helpful. Thank you.mmx

[Heady]

Hi Minniemuffin, lovely name by the way! I agree with everything that has been said. I think one of the points you have to get through to your father. If he wants to look after your Mum at home, then there is NO CHOICE he has to accept help, in what ever form that comes in.

Lots have mentioned Superman, well I think this evil disease would bring even him to his knees, like it has the rest of us!

We all fight this battle, "we know what's best for our loved ones," ,"how can anybody look after them as well as us." It's all b£&@&£@&t, none of us can, but each and everyone of us, has to get to breaking point before we let help in. Your Dad is the same, let's hope you get to him before he actually breaks.

Best of luck with your talk. Please, please put your Dad in touch with this site and stay on it yourself. It is the greatest thing on the Internet. We all support each other, we rant, rave, scream, cry and laugh at lot. We share the good and the bad, mostly we are an ear to listen to someone in need, that ACTUALLY knows and understands how tough life is, when someone you love has PSP

Lots of love

Heady

[Minniemuffin in reply to Heady]

Do you know what, I could sit and cry and wish I had found this site sooner !! So much has gone around in my head, am I doing the right thing, should I just let dad get on with it, will he hate me for interfering, it's just sometimes looking from the outside in you see the whole picture, with all the help and advice given from people on this site that are fighting the same battle makes me realise that I need to stand my ground and make dad see that he needs all the help he can get. Thank you so much. X minniemuffin.

[shellwol in reply to Minniemuffin]

What a lovely group and yes,i too wish you had found it sooner!

I'm Minniemuffins sister in law and looking forward to reading through all your comments. xx