Better off dead

[gypsywoman1947]

What is the best response to my husbands frequent outbursts that he's fed up with this illness and he'd be better off dead. It leaves me depressed to the point where I can hardly function. I can no longer think of anything uplifting to say. I almost feel the same way some days. Love to all , I know one of you will come up with something useful.

[Yvonneandgeorge]

Gypsy woman George says I am going to die soon, and I just say to him, what about me, and what about the children and grandchildren, he seems to perk up a bit, he says he worries about me if anything happens to him, I say, don't even think about leaving me you have years left, it is so sad, because if I had this illness I would feel the same, look what it does to us, and we are the careers!!!!

It is so hard to hear that and sad too, really don't know how to deal with it, so sad, after working hard all there life's to end up with this horrible illness. Give him a big hug, and just tell him you love him. Yvonne xxxxxx

[jzygirl]

Hi gypsy not sure how to answer this one. But shortly after diognoses a lot of psp people go through a stage like that but a bit of positive thinking will go a long way. We had a short spell of the woe is me but i told him if that is going to be his attitude he can go elsewhere. We had a few heart to hearts and now he grabs life with both hands and lives it best that he can.

Janexx

[Hidden]

This is so hard and unfair for all of us. Two days ago my husband asked me how much worse he was going to get. I told him the truth because I believe that is what I would want. But I also told him we will just do the best we can do, letting him know we are in it together. He was quiet the rest of the evening but seemed better the next day. Except that he is in the middle of one of the downhill slides right now.

There is just not much more you can do besides letting them know you love them and are there for them.

[cabbagecottage]

last night as I was getting John into bed after hoisting him out of his chair onto the commode and off again to get in the bed . he came out with .,I don't deserve you ,

I told him he has earned all I do for him and that we the same team we have always been . WEHave Parkinsons !!

[Kathie48]

When Bill gets low I just hug him and talk about all the wonderful things that we have done together and tell him how much I love him and how he is my soulmate and kiss him. Which is fine if I am cheerful but not so easy if I am down too! that is why the most important thing is to look after yourself as much as you can and keep as cheerful as humanly possible.

Good luck. I will be thinking of you .

Love Kathie

[Lieve]

What can you say? I'm sure my dad thinks it when he looks at everything he had, everything he was able to do - and now there is so little left. He doesn't complain at all to my mum and me, but I sometimes catch him talking to a visiting friend, that it's hard to adapt, to accept and it makes me feel so sad, I get all choked up - but trying to keep a happy energetic mood going for him (to balance my mum's negativity and selfish moods), helping him with whatever he can still do.

You can only look at every happy moment, the little things that still ARE, and hang on to those... so hard. And then if you go through downs, it's only normal.

Having lived in the US for ten years, getting therapy is a normal thing if you feel you can't cope - here it's hardly ever refunded by health insurance. Even the nursing home we visited said they didn't provide it as part of their normal service, it would be an external service at extra charge. Not that it helps the situation, but sometimes it's good to talk to someone outside the situation and get some gentle advise.

Big hug to you GypsyWoman - and all the PSP sufferers (includes carers!)

Lieve xxx

[myjual]

I feel like this a lot of days especially after two falls yesterday using the emergency button for one but I no matter how often I. Ask it seems God has other plans I just wait for him to share them with me love to you all you are doing a great job xx

[Amilazy]

Hi gypsywoman I agree with jmhk it is a terrible question with no answer other than truth and love with of course children and grandchildren as an encouragement to fight PSP. The journey is a hard one for both it can be eased with laughter and hugs but there are times when it is just a hard slog.

Tim

[Heady]

Hi Gypsywoman, sorry don't know what to say. Thankfully, not had to answer this question. S to full of apathy to care! (One good symptom!)

I think the only thing you can do, is what the others are saying, just tell him you love him. Then, if convenient, take him out somewhere. A ride in the car, a great past time, as he hasn't got to do anything! Out for lunch, coffee, anything that you know he will enjoy.

Lots of love

Heady

[Doglinton]

Hello, gypsywoman, Was he always a bit negative or is it new. Is it a recent change, which may be temporary ?

C doesn't say this, although he sometimes says he thinks it may be today. But in a calm, accepting, way.

I would say I understand what you are saying and why and then share memories and look at the good things he can still enjoy. At present there are many of these for us but I do dread there being a time when I can see no value in going on. I don't know how I will deal with that.

When anyone asks him he always is only concerned about the effect on me.

It is a terrible situation for an energetic, enthusiastic man to end up in.

I don't think this is any help to you at all but I understand.

love, Jean

[gypsywoman1947]

Thank you all for your replies , it's just a great help to have friends on here who understand . My husband never used to be so negative , the illness has changed so many things. He does not accept that there is no cure , his latest remark today is "they just won't spend the money " yesterday after another bout of shouting and ranting that the neurologist is talking through his backside and doesn't know a thing and I might as well be dead , it went on and on , I'm afraid no amount of soft talk changed him and I banged out through the door to the local cafe, where I had a coffee and Hugh lump of coffee cake. On my return 30 mins later he was as fine as could be , pleasant , cooperative , easy to talk to . Oh well we are all in it together, different problems to contend with but all in the same boat. Best wishes to you all. X

[Hidden]

hi their i know sometimes i feel like that but just think of this old saying you have nothing to die for but everything to live. most of us have medical problems and yes they do get us down but i thing i will say is this he isn't a lone in the world of ours there are plenty of people with illnesses and some might be worse of than us so just ask him to think if there is anybody that worse than him i wonder what they would say take care hope this helps bigalan

[abirke]

He is depressed. A common (?) symptom of PSP. The best way to help you is to get him to the docs for some antidepressants. You both might could use it for a while. don't be too discouraged. We are all going through soemthing. B told me of his sadness with PSP and the loss of his eyesight....He told me he was stupid. It killed me.....Our mates were never stupid or would have ever thought of thinking that they were better of dead....It's the disease! Our mates were strong and intelligent and funny and concerned........now they are good to walk across the room or swallow without spewing it all over....God!!!!! You are not alone, sister in psp, you are not alone!

AVB

Be of good courage, and he shall strengthen your hear, all you that hope in the Lord

Psalm 31:24

[Julieandrog]

hi gypsy woman

hard hard times, have you contacted the local hospice? ours have arranged for a volunteer to visit rog weekly they play cards for a couple of hours or just chat. just an idea they also do day hospitals which are great, your gp should be able to refer you.

julie x

[Robbo1]

You poor thing. This may, or may not work for you, but when I am down, I think of the good things that we have and of how things could be much worse, (no washer, no NHS, no free prescriptions, or friendly e-mails etc.).

When I was down, my daughter told me not to beat myself up, but to think of how much more it means to our loved ones that they are cared for by us rather than than strangers, even if we do fall short of our self-imposed high standards now and again. They may not say so, but we know that if they were not so ill, surely they would be able to express how grateful they really are.

Sending warm, good wishes.x

[gypsywoman1947]

I know , you are so right, usually I deal with it ok but we are having to move to a bungalow cause of this illness and could get no help with adaptions, and it's a build up of house moving stress that has lowered my mood ! 13 weeks of untold stress, finally moving this next week , so that will be one stress less and it should be a little easier for us . My husband has had bed in lounge for ages , be glad to get some normality back. Thank you for your input. X

[Robbo1]

Sorry I haven't replied before now. Things have been hectic. I hope you are settled into your new bungalow. I have been looking for one for some time. We are now both downstairs, as my husband has had a couple of choking attacks in bed and I felt I should be nearer, in case he needed help. It's crazy to maintain and clean a reasonable sized house and both be sleeping in a downstairs room!

Goodness, you have done really well to grasp the nettle and move! I think it must have been overwhelming. I hope you had plenty of help. Best wishes in your new home. Rx

[gypsywoman1947 in reply to Robbo1]

Hello Robbo, Well we have moved and we are in , been in about 2 weeks . It has truly been horrendous but better now than later. I de junked and packed completely on my own I don't think the family had any idea what it was like , but they helped once we were in the bungalow. The first week my husband was totally disorientated, he manages to stagger around holding onto things. He would come out the bathroom and try and get into a cupboard and he still hasn't found the kitchen on first attempt. His falls were more frequent but this second week has been better. From my point of view it has been worth it as I have less fetching and carrying and we don't have to struggle with the stairs for a weekly shower. Less housework and less gardening. I think the family were right , they mentioned the rooms we could no longer enjoy , many a night I used to spend more time on the sofa in the lounge than in a bed. I am glad I have done it , but it's not for the faint hearted I have shed many tears at leaving our family home but I know it was right to move under the circumstances . I wish you both good luck in the bungalow hunting , I had to hunt on my own as husband was not fit to come with me but he likes it.Its not easy finding one , in our town there were very few available in our price range.

[Robbo1]

So glad you are settled. My husband falls less now as he is in a wheelchair. He had a knee operation that went wrong, which was a blessing in disguise as he had already broken his spine in a fall., split his head open twice and fallen downstairs before having the chair. You know how awful it is to see someone you care for having these ghastly things happen to them. I noted his falls for a period and there were so many, it was crazy. Broken furniture, torn curtains, I can now deal with. It's losing the person you married that is heartbreaking. I think we carers are in a state of grieving for what is lost most of the time.

You have been so strong, moving, with all the other problems in your life. Best wishes. Robbo1. XX

PS If you need respite, contact the Royal Voluntary Service. They give me 2 hours a week to go shopping,( or whatever I want to do). The lady who comes is lovely, she and my husband play Scrabble and both enjoy it. X