dear Dorothy Thompson I have psp, and my husband has to do everything I find it very ,very hard to talk and my husband does not

[MOMBCD1]

understand what I am trying to say it is very hard and verytiring,

[dorothy-thompson]

Dear Mombcdi

[dorothy-thompson]

Dear Mombcdi

I do feel for you, this is a terrible thing that we are all going through, my heart goes out to you, I know what you and your husband are going through. How do you communicate with each other?

We had our first assessment today for NHS continuing funding but was told that my husband would probably not qualify because he did not meet with the requirements.

From the questions that were asked and the responses given, my conclusion is that to receive the funding, the person would either have to be completely comatose or a danger to themselves or anyone around them - yes he is and that anyone is me!

Ho Hum

Dorothy thompson

[Hidden in reply to dorothy-thompson]

It is a battle but you have to keep reapplying as by the time they come back he will have progressed and they then have 'evidence'. Keep all your own evidence as I suggested before. Keep a diary and record his sadness/anger/and violent responses, things he can no longer do, differences with speech/swallowing, coughing fits etc.annotated photos of pressure sores, bruises. As you say it has to be bad with no quality of life or exhibiting dangerous/depressed behaviour but you know you can contest what they want to write on the assessment sheets? Because we had the same people twice they could see the deterioration and they were positively encouraging me to project the worst side of things on the second visit I suspect they have to look as if they have tried to save the govnt money by making more than one report /visit. But they have to present their findings to a panel and they do need the evidence. I gave them a descriptor of PSP symptoms and highlighted all those that mum already had. It only left danger and depression off because she was bed bound then . Prior to that she had been a big danger to herself as she kept falling as soon as people left her for a minute.They were keen to have that as part of the assessment. .As I said mum was granted hers when literally all hope was fading and due to paperwork errors we actually didn't get it until the week after mum passed. But it was £8,000 so not to be sniffed at and it did refund what we had spent on nursing home fees in the meantime. Don't let them get away with not paying what you are entitled to.Don't give up.xx

[dorothy-thompson in reply to Hidden]

hi Daughterno1

I don't intend to give and if I have to, will re-apply. But there is now a complication in the mix, my eldest son is very much against his dad going into a nursing home, for all the reasons that he reads and hears about the neglect of some people in homes. Of course this is always at the back of my mind as well but the strain on me is becoming intolerable. My son is very good and very hands on with his dad when he can be and I would not want any rift with my son, but it's my life as well and I have been the "carer" for a very long time in my marriage. I want some "me" time, I hope this does not sound selfish.

Thank you for your support

Dorothy thompson

[Hidden in reply to dorothy-thompson]

It is not at all selfish.Our loved ones in their right mind would understand and I found that mum and I had a better relationship once she did not have to have me doing all her personal things. Obviously being my mother and not my spouse meant it felt wrong for her to have me doing it, especially given that she was from a different age.I still fed mum and took her out and made sure everything was done just right but it was an excellent home and I knew they would give mum the right care if I wasn't there.My sister would do the odd thing if I asked her to but it was not enough and I couldn't do it all by myself in the end.Your son would not want to lose you too. Sometimes men are the worst ones for accepting the inevitable and think that keeping 'normality' will stave off health changes. Have you tried sitting him down and telling him how it is affecting you and is there anyone that could act as a caring intermediate to make him aware of the pressure and stress. He probably doesn't really know the half of what you are doing. You probably don't even realise how much has crept onto the jobs list everyday and I know that even a shower can take an hour and more with military planning. I was washing mum's bedding and changing it everyday, cleaning carpets daily, having to chase up carers who called in between me going in and trying to work to pay my mortgage.I had ready meals being delivered and all sorts of paperwork issues going on, medical people to chase up, GP visits, hospital appointments, without the mounting and almost daily paramedic visits for mum's falls when she was left for a short time.I would have gladly had mum at home but I would still have needed help each day for showering etc and someone at night so I could sleep. I had to think of my marriage -it was literally on hold while mum was so ill as I spent all my hours when not working at mums! My husband was a saint in this time, never complaining and cooking all our meals. He just couldn't have done the nursing side of it, neither could my sister. Regarding homes your son may be better if he could visit one or two as things have changed a lot in the last few years. For one thing they have a type of care OfSTED, called CQC (Care Quality Commission) which inspects and reports on care homes and hospitals which you can look at online and question them about when you visit.My sister and I visited together so that I would not be blamed for the choice but also as 2 heads are better than one.Then I got mum round to have a look and she stayed for tea. Then she stayed for a week and loved it as they made such a fuss of her. So when she needed to go in full time only a month later she was far more willing than I would have expected. She still came back to my house or to restaurants for meals sometimes and we still went to the shops etc. But I didn't have the gruelling task of getting her ready beforehand and being exhausted before we went! I do hope things work out for you. I remember the sheer exhaustion and feel for you. Take care and stay in touch.xxx

[NannaB in reply to dorothy-thompson]

Hi Dorothy, Please excuse me butting into your conversation with Daughterno 1 but I think I know how you feel. When my husband was first diagnosed in 2010, he said, "You won't put me in a home will you?" My reply was that I would do all I can to keep him at home but if I ever got to the stage when I couldn't cope, I'd reconsider what was best for both of us. I've also had a lot of caring experience. Apart from 3 children, who I loved caring for, I also helped dad care for my mum for 15 years with Alzheimers. They were both 89 before I managed to get her into a home as I was sometimes driving the 5 minutes to their home to clean her up after "accidents" early in the morning before going to work. Dad didn't want her dirty while waiting for the carer to arrive. He thought he was coping but it was me keeping things going. Mum died when she was 90 and dad still says would still be alive if he was looking after her. He will be 96 in October and after a fall broke his hip and he refused to go to the cottage hospital for 2 weeks, he is now housebound as I can't push 2 wheelchairs at once. I take my husband to see him most days but it's exhausting. I deal with all his bills, insurance renewals, repairs, carers queries, appointments etc, etc. Only yesterday he said he felt like crying as he is lonely but, "Don't suggest I go into a home as it will kill me like it did your mother". I don't think you sound selfish (although I thought I did until I read your post). I don't want to be too old before I can do what I want as much as I love my family and feel blessed to have them.

Sorry for the moan, a bit tired. Had to call the ambulance at 3.15 am as Colin had slid gently to the floor from bed and I couldn't get him up.

Keep smiling.

Nanna B

[MOMBCD1]

dear Dorothy Thompson

9am not a caregiver so, I do not know what it is like to have to take care of someone 24 hours a day 7 days 0f the week and I think it is very hard on anybody who takes it on I think it is too hard on my husband. he is 65 years old and I feel like I should be doing things for him instead of the other way around. I used to do transcription of charts for a doctor now I can still type for the time being but only with one finger it is very hard for me to type .but back to the topic I got carried away it is my husband who does everything I used to do. he says I used to do everything for everyone now it is his turn. but I don't feel that way. I cannot walk he still walks me everywhere I cannot talk and he cannot hear too well so that makes communication very difficult i cannot write very well either and I used to sing in the choir at church I cannot do that either. I am just useless.

Barbara daughtry

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[shasha in reply to MOMBCD1]

DEAR MOMBCD .

PLEASE DONT FEEL LIKE YOU ARE A BURDON - I AM THE SAME AS YOU CANNOT WALK OR TALK MUCH ANYMORE AND MY HUSBAND IS A SAINT - HE SAYS THE SAME AS YOUR HUSBAND AND IT IS TRUE ABIUT YIU BEING THE ONE WHO NEEDS THE CARING FOR NOW ......I KNOW HOW USELESS YOU FEEL BUT PLEASE DONT AS YOU HAVE OBVIOULY BEEN A WONDERFUL PERSON AND A CARER TOO - ARE YOU DEPRESSED ? IF SO IT MIGHT BE WORTH HAVING A WORD WITH YOUR DR ... TAKE CARE AND KEEP TYPING WITH ONE FINGER !!!

[shasha]

MY HUSBAND IS 77 AND HE LOOKS AFTER A HUGE HOUSE AND GARDEN AND POOL TOO - SO THINK HOW GUILTY I FEEL ,

[MOMBCD1]

dear shasha I feel like my husband is vey good to me he keeps me clean and neat he makes sure I an dressed when we have company over and he makes sure I have enough to eat always. I feel like I am in another world like this is not really happening. I am so miserable I don't know what to do

Barbara daughtry

[e-mail]

[MOMBCD1]

dear Dorothy Thompson

thank you for responding. I have a lot to say to you but I don't know if I can type that long but I will try. I am trying to communicate with my husband. but he is hard of hearing and I am very hard to understand. I get tired too. I di not know what I will do when I cannot write any more I will have no way to reach him any more I knew this would happen I am too tired to type anymore.

Barbara daughtry

[e-mail]