Good evening, I have only just found this site and I am lost. My darling Husband has seen 2 Specialists now, the 1st one diagnosed Parkinson Disease and then after more extensive tests the 2nd one thinks he has either CBD or PSP and as there is no medication for these he has started him on Sinemet which is for Parkinson's Disease, it's very early days yet though as he hasn't been on them a week. His movements are very slow, he's had numerous falls and has a mask like face, his speech is sometimes slurred, he forgets words and sometimes can't make himself understood, I have to more or less second guess at times what he's trying to say to me, all his right side is affected more than the left, he can't lift his right foot properly when walking and he shuffles a lot, he can't use his right arm properly, and has a had a few bladder accidents. I am so worried for our future, I am having to give up work now to look after him (he is 71 & I am 62) as he does things like leaving the fridge/freezer door open, door keys left in the door on the outside and I'm frightened of him really hurting himself when he does fall, he's already had 2 black eyes and had to have a brain scan to make sure there was no more damage after banging his head badly. We have also just lost our Girl to Leukaemia in July and he gets very tearful if I speak of her, he also laughs at nothing and did this in the Clinic when seeing the Specialists. I am at a loss at how to help him, there is a Specialist Nurse coming to our home later this month and I have so many questions for her. I am also trying to look after my 85 year old Father who has Dementia and doesn't know who I am anymore, I feel like my whole world has come crashing down and I'm struggling with my own mental health under all the stress, I have physical health issues of my own and see a Consultant every few months so I worry so much in case I'm not well enough to cope with all the caring responsibilities, I was the only bread winner and I'm worried about our Finances if I give up my job, it's all just too much x
Lost: Good evening, I have only just found... - PSP Association
Lost
You came to the right place. Everyone here has a story to tell. Yours is very sad. It is overwhelming to have so many things happen so close together. Everyone here is more than happy to listen to what you have to say. You aren’t alone. We all understand. I know that isn’t much comfort. I can only wish you well.
Thank you Jeff166, I really think I'm going to need this site and I'm so glad I found it, it seems you all support each other which is fantastic, I have been reading some of the posts and I'm very scared of what might happen x
So am I.
It's very scary Jeff, I knew for some time that he wasn't himself but he refused to see anyone and people who hadn't seen him for over a year were shocked at how he had gone down hill
Me too!
Me too. My husband is 61 and was just diagnosed with CBD in August. He also falls a lot. I am also worried about my financial future because i still have two daughters at home. I've been to a lawyer and he's helping me legal things. Do you have any family members that could help with his care so that you could still work?
Keep strong.
Welcome to this wonderful site it is of tremendous help, advise and support as you both go on this journey together. I'm not surprised that you are mental health issues due to the tremendous amount of stress you are enduring. Losing one of your children is unthinkable and to add your father and husbands condition into the mix must be unbareable. I think you are probably in the UK and if so please contact your local hospice, they can offer daycare, counselling and treatments free of charge to give you some time for yourself. I found their counselling service invaluable to help understand your feelings and also help to fill in forms for the various benefits you are entitled to. Keep posting and sharing it is like a family who totally understand what you are going through
Much love
Kate xxx
Thank you so much for your reply Kate, yes, I am in the UK, we can't get any financial help as we have worked hard all our adult lives and have some savings which we will have to use just to live off until they run out, I'm so frightened of what's going to happen to us, I have applied for Attendance Allowance as as far as I can see it's not means tested, we can't get carers allowance as he gets a State Pension, I have applied for a Council Tax reduction as well, if we need to have the house adapted at some point I don't know how we will afford it, it's all a nightmare, he's never been ill, never even been in hospital so all this has come as huge shock, I am trying not to think what the future might hold and trying to take it 1 day at a time xx
I'm so sorry to hear of all the things you are dealing with. I think you should be able to get Carers Allowance as that is for you and not your husband. You will be eligible if YOU don't get a state pension or other benefits.
Kate is right that you should get in touch with your local hospice. In UK they are not just for end of life care and will support you throughout this.
Vicki
Hi again, carers allowance can be paid to you if hubby gets higher rate attendance allowance, very easy to get and they do not count occupational pensions as income!
Do you have a blue badge and as your husband progresses you should get CHC funding which covers all care costs and respite. The hospice can advise on this. You should also get motorbility payment if he has problems walking, transferring without help. It's seems to being in the know as things aren't offered on a plate, this site is great for advice on what and how to apply for benefits you are entitled to.
Kate xxx
I have a Blue Badge for myself Katie as I have mobility problems too due to disc degeneration, can we still get CHC funding if we have some savings, he is too old for me to apply for PIP for the mobility part which would have hopefully led to the Motorbility as he is over 65, he has stopped driving now so I have to do all the driving to appointments etc. The specialist wants to see him again in April to see how he's coping with the PD meds, I am going to ask the specialist nurse about any help we may be able to access when she comes to our home later this month x
CHC funding is not means tested, you have to meet a stringent criteria and I understand that many have great difficulty in being awarded the NHS funding. It should be equal across the board but seems that's not the case. Ben was awarded the funding first time even though East Sussex supposed to be a tricky area to secure funding. Maybe we would have got it earlier in hindsight. Speak to you local hospice as they have to submit assessments of the level of dependency your husband is at. They obviously need to know him an the first place. Our Parkinson's Nurse and SALT (speech and language therapist) were invaluable as they gave extra evidence to support the claim. It's a bit of a minefield but worth the pereverence as they have a duty of care to the patient and carer to ensure they at being being looked after properly
Hope that helps
Love kate xxx
You sound like you have a lot of stuff going on and I have no advise. I am glad you have found this site where at the very least others will understand.
Hi lianeyash, so sad to read your post but I hope you will get the support and advice to help you on this site, I think we have all been in a state of shock when this has happened to our loved ones and one of the places I found that you can get help from is Age UK, they will help you to complete paperwork to apply for any financial assistance you may qualify for. As you say Attendance Allowance is not means tested, nor is CHC, they can also provide Home Helps for cleaning etc. All carers are entitled to a carers assessment for support for you to enable you to continue in your role as carer, you can be registered at your GP as a carer too which will alert them to your possible increased needs. You can apply for reduced council tax due to mental imparement. A blue badge is a must and also contact your local Social Services they will send an OT to assess your home for things such as grab handles, extra stair rails, adaptations to outside doorsteps and handrails, all of which were totally free to my dad and not means tested (he was in a similar situation to you). Bathroom conversions etc can also be carried out, even Home extensions and through floor lifts, wheelchairs etc., depending on your needs and home suitability. We were also advised to put his name on the housing list for adapted housing (also not means tested and is needs based) and he would go to the top of the list. As it turned out matters were taken out of our hands, as he deteriorated rapidly and has spent a month in hospital and is now in a nursing home funded by CHC, for which he was fast tracked, together with a top up from us, as the home we chose had higher fees than the CHC covered but others we viewed would have been completely funded by the CHC payment. This leads to my most important advice which is to ensure that affairs and wishes are legally in order as a great deal of time can be consumed navigating officialdom and that is time and energy needed for more important caring. My dad’s ability to write and speak deteriorated at an alarming rate so this must be done before effective communication is lost. We were lucky in the end, our specialist Neuro Matron was very helpful in securing CHC funding. Also contact the PSPA and try to attend a meeting in your locality to help you meet others in a similar situation for face to face support. There are many on this site who have much more detailed advice than I regarding such things as CHC and will do their best to help you. Please don’t despair we are all here to help and support each other through the PSP maze. JR61 x
Good advice here. I would certainly suggest you contact your local hospice. It varies but for us it meant Chris went there one day a week for 5 hours. It saved my life. They also had him in for respite a few times. Plus they offer counselling and support.
Keep in with this site. Even if we can't make things better it really helps to know we really do understand.
I remember how frightening it was when we first heard the diagnosis.
love from Jean x
thank you Jean, does our GP have to refer him to the local Hospice or do I just go to them and ask for help?
Our GP referred us, initially for counselling. I think you could ring them yourself and ask.
Our hospice was just so full of caring.
thank you Jean, will give them a call x
Lainey a lot of what you posted yells PSP. However you will soon have va diagnosis. He shouldn't be left alone so you have done the right thing giving up your job to care for him. However you also need counselling! You can get this FREE and a lot quicker at your local Hospice. I have read some of the advice you have been given and most of it is exactly right. However to the best of my knowledge you won't get carers allowance if you are claiming your state pension.
You need to get your power of attorney into place asap for both health and finance as your husband will need you to make decisions on his behalf and do this sooner rather than later. You need to talk to him about a DNR and if he wants one or not. You also need to ask him if he gets to a stage where he can no longer eat does he want a PEG. This is something some people agree to but others don't. My husband didn't want one. Do it in a what if something happened to us conversation. It's easier if you include your feelings about what you would want to happen to you. At least that's how I dealt with it and my husband accepted us talking about those issues. If I had just focused on him I think he would have become very scared.
This is not an easy thing to face and you are also grieving for your daughter and your Mother. She might be alive but she is not the person you knew? Sadly the same thing is happening to your husband.
One good thing is you found this site! The people on here are so kind and as they have been or still are carers understand exactly what you will face. Or at least some of the things. No two people are the same so it's hard to say what will happen to your husband. It is also hard to know how long he might live.
My heart goes out to you but just remember we are all here for you. There is lots of information on here! Enough for now! If you want to know anything at all just ask. Search some old posts and you will see we have talked about just about everything. Don't worry you will come through this. There are lots of people who will help you and a lot of free help too.
My husband had Leukaemia too but got very expensive drugs on the NHS which worked! Sadly he then got PSP and MSA another neurodegenerative disease!
Lots of love to you and a great big hug!
Marie x
Hello and welcome to a group no one wants to belong to, again I have written this way to many times. Unfortunately you are describing most of our loved ones first diagnoses.wealth of information here.
Ask away
Dee in BC
I am so sorry you have gone through SO much. I only have PSP to worry about, and that is overwhelming. I can’t imagine dealing with a recent loss and an ill father too. There are people on this site who are very knowledgeable and helpful .
So sorry to hear of your situation, keeping you and your husband in prayer. I too am new to this site. I stumbled upon it while searching for info myself for a loved one. Keep your chin up, and research on your own as much as you can, sometimes we the family, and patients, have more time than the doctors to find relevant information to share.
Already you have been given lots of helpful information which proves this site is an excellent source of help. Very sorry you have to join us but a warm welcome to you. Jxx
Welcome to the site, what can I say, it has all been said, people on this site have been my lifeline. Yvonne x
Hi
I think we all started this journey in a similar fashion. The early days are encapsulated in a haze of emotion,fear,and panic.
Like you i had to give up work to care , you will hit the ground running particularly with the all your other commitments.
Your gp controls most of the refferals to other agencies, so first job make a double appt and get in the system, i have always found the hospice the most reliable, always delivering what they say they will.
Friends will come and go, their loss , true ones will stick with you, long journey my lovely but you eventually become accepting to a degree which i find helps me cope.
Julie x
Hi and welcome to the site i was just like you, so frightened. Then i found this group i check everyday for different advise from people going through exactly the same as me caring for my husband.
the site has been great for me making me understand CBD.
speak soon x
A huge thank you to all who have replied to me, you have given me a lot of advice which I need to read through thoroughly and I have a lot of questions for the specialist nurse who is coming to our home later this month, I will check this site daily as I don't feel so alone now, thanks again to you all xxxx
Hi, welcome to the best web site of all time. Being in here saved my life and made my husbands journey with PSP a lot less scary. Everyone has given you very sound advice. Contacting the local Hospice is a MUST. They are not for the dying, they help people with life limiting diseases, LIVE! Plus they will look after you as well.
The one thing I would like to get across to you, is concentrate on what your husband can do, not what he can't. Accept all the help you can, demand more, when needed. This isn't something just one person cope with, on their own.
I am very sorry to hear about your daughter, the hospice should offer counselling, for your husband as well yourself.
You are not alone anymore. You have just inherited a huge welcoming family, we have a combined huge shoulder for you to cry on. We all share the good, the bad and the ugly. Nobody will judge you, all too busy feeling actually the same. We won't be able to take away your pain, but we do completely understand what you are going through, offer advice, when needed, most of all, listen to the ranting and raving, that you will need to do.
Sending big hug and much love.
Lots of love
Anne
Anne, thank you so much for your kind words, I'm so glad I found this site, I don't feel so alone now, I am heeding all the brilliant advice I have had so far, my Husband is my world and I am totally devastated about all this but as I say, I no longer feel totally alone, thanks again xxx
I am so very sorry to hear of your situation. My husband has PSP, and his issues are on the left side of his body. I am struggling to keep a level of normalcy and still provide the care my husband needs. I don't get to post here often as my husband is with me constantly, but I read the daily posts and am comforted to know I am not alone in facing an uncertain future. The people here are the best. Lean on them.
thank you Baytalon, I am going to look at this site everyday as I'm so glad I've found it, I don't feel so alone now xx
My husband was first diagnosed as Parkinson's disease and later as PSP. His left side has been very weak. Your experience with the disease is similar to mine. My husband's nose started running about an year ago, no allergy issues. Must be the PSP effect, his eyes are also exrtremely sensitive to light, cannot watch fast moving tv shows etc.
Of course you two have gone thru a lot losing a child, and caring for an aging parent... My heart goes out for you. You are under tremendous stress. It is only natural that you feel like you are losing yourself.
This site is wonderful, lot of good advise has been given. If possible see if you can a support group in your area. I have heard that such meetings help the care givers. Keep you in my prayers.
Has anybody here with CBD or PSP experienced a constant runny nose, my Hubby has had a constant runny nose for at least 6 months now, he hasn't had a cold or anything like that, I just wonder if it's all part of his condition? x
This is pretty common in PD and PSP I understand. My husband has phases of a dripping nose but it's me that goes through the boxes of tissues as I have year-round allergies!
Hi, Laineyash, and welcome. So sorry to issue the welcome, but since you need support, we are glad you are here. As others have said, you will learn so much on this site, and will find it a place to express your fears, anxieties, and even your successes as you learn new ways to assist in caring for your husband.
Like you, my husband has a drippy nose, and also a mouth full of saliva all the time. The nose dripping is worse at meal times, for some reason. Just goes with the lovely disease, I suppose, and is the least of our worries, isn’t it? Take care of YOU each moment you are able to do so, and advocate for your darling at all Dr appointments, etc. He is depending on you, and with God’s help, you will be strong!
Sending big hugs,
Ann
Love and hugs laineyash. We are beginning this journey too, it is scary, but I find it just a little less lonely knowing there is this community here. Make a list of all the things you want to ask the specialist nurse when she visits and she will be able to help you sort out benefits too, or tell you who on the team will.
You should be able to claim Carers Allowance from what you've said, once your husband is in receipt of attendance allowance at either the middle or higher rate - full details are here on the official governent site. gov.uk/carers-allowance/eli....
Look after yourself too, you've been through a lot already.
Greggles, thank you for your replies, I went on one of the Government calculators and it said because my Hubby gets a State Pension we are entitled to Carers Allowance but won't actually be paid it as he gets a SP, I am hoping I can get Carers Credit where my N.I. contributions are paid as they will go towards my SP in 4 years time, I can only apply for this though if Hubby gets Attendance Allowance (which I'm waiting to hear if he can have it). It's all a minefield and more stress we could do without x
Yes, it is hassle one can do without. The Carers Credit is pretty straightforward though once your husband gets AA and as you rightly say protects your SP entitlement so is more valuable than it may appear in the immediate scheme of things.
I read with interest the posts here that mention carers allowance in the UK. Does anyone know if such a things exists in the USA?
Hello and welcome to this site. You should have a Parkinson's Nurse if you are in the UK. She should be able to advise you. You need to get in touch with Social Services and ask for a Carers Assessment. Also contact your GP, tell them your worries and ask them for advice on what support is available.
Feel free to ask, to moan, to rant, here, whatever it takes to keep you sane. Sending a big hug. Rx
Hubby has had another fall this evening, luckily, I managed to help him up myself as there is nobody to help, he seems to keep forgetting the bottom step on the stairs, I have to be with him constantly when he wants to go up or down from the bathroom, has anyone else experienced this?
Falling is always a problem. Finding ways to get him up become increasingly tricky !!! It isn't helped by the impulsiveness that goes with it. You will find you always need to be alert.
xx
thank you doglington x
Can I just ask, my hubby's urine is a very dark orange, is this normally related to CBD or could it be something else that I need to see his GP about? Thank you in advance x
Could be a urine infection. See GP as behaviour can change with a urine infection.
love, Jean x
Thank you Jean, he doesn't seem to be ill as in infection and his behaviour hasn't changed but I think I will call the GP just to check it out xx
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