Desperate

[Ruth1921]

My husband, with PSP, has twice today said he wishes he was dead. This is so difficulty and I'm at such a loss as to know what to say to him. This hopeless feelings pervades everything whatever I try to do to keep him cheerful. It's just awful.

[Kevin_1]

Hi Desperate

I can imagine his views are, for some, expected given the illness.

However he may be suferring from a clinical depression if those thoughts are so persistant. The depression might be a reaction to knowing that he has PSP and a failure to adjust to that, or for example, it might actually be a symptom of the PSP.

I would strongly sugest you get his permission to talk to his GP.

Remember PSP usually involves impulsive behaviour. Someone who does not want to live might be a risk to themselves.

Modern anti depressants can be very effective.

I do wish you well with this it must be hard to bear.

Warmly

Kevin

[Ruth1921 in reply to Kevin_1]

It is so very difficult. B has been on antidepressants but they have done nothing. He's also on ropinirole and amantadine but nothing is helping him. I think this is part of the way he is feeling - nothing works so life is not worthwhile or bearable. I've tried to take him out in the car - we live in a beautiful part of the country by the sea and the New Forest - but he just sits with his sunglasses on and nods off. I'm just in despair as to what I can do for him.

[Kevin_1 in reply to Ruth1921]

Hi Ruth1921

I understand.

My Liz became frightenned of her ending and so we talked about her fears, expectations and beliefs. It helped a little that I have some therapy training, but what I did was simple. We just talked and I asked simple questions, what is it you are frightenned of, what do you think might happen at the end. Anything to to help her clarify her thoughts. I also read pieces on Humanism, she is instinctively Humanist.

I don't know his beliefs, or his concerns, so there is no advice I can offer excepting that you might ask the GP for counselling or better still a referral to your local hospice. Most hospices have counsellors who are very skilled in this area and PSP should not be a bar to this sort of support.

I expect you have thought of all of these things. So I am just reaching out to say I know it's tough and perhaps you might bolster your own support?

Warmly

Kevin

[Dianajeanann]

I am going through the same thing. Antidepressants aren't helping. I understand how he feels, and I would feel the same way in his shoes. He says that the only reason he won't do anything is that he doesn't want me to be alone. His attitude towards me is always sweet and loving no matter how badly he is feeling.

[SewBears in reply to Dianajeanann]

My hubby is going through the same thing as Dianajeanann. I tell him that I will be okay when his time comes. This seems to put him at ease but it’s still very sad indeed.

[lindaD_]

my husband used to say that too ,i wouldjust tell him that i didnt want him dead ,and not to say it in front of the grandchildren, which he would do straight away. when he died my daughter said to me were we being selfish because dad didnt want to be like .i just didnt want him to give up and i didnt know how to cope if i had to do it again dont know what i would do ,so very hard.thinking of you xx

[LuisRodicioRodicio]

Hi Ruth1921!

I agree with Kevin´s experiences and suggestions.

The PSP manifests itself in a similar but different way in each patient.

Our experiences are:

This March marks the 7th anniversary since my wife presented the first specific PSP-RS symptom.

For more than 4 years and as directed by a psychiatrist, she is taking a "Sertraline 50" pill every morning (with the breakfast) with good results in general and without side effects. Sertraline 50 takes a while to show its effects.

For more than 4 years and at dinner one pill of Lorazepan 1 mg was administered with good results.

For some time ago, before giving dinner and with the approval of the doctor we give a dose of 6 mg of CBDOil (LOVE CBD-Entourage) with good results regarding anxiety and appetite.

Hoping to be useful. Hugs and luck.

Luis

[Melhukin]

This is so sad. Stay strong.

I know my dad would rather be dead than to suffer anymore. X

[HilsandR]

Oh Ruth, those were the exact comments from my husband that always had me running to the bathroom and sobbing into a towel so he couldn't hear me. I always felt it was just his cry for help in a desperately intolerable situation and after it was said he'd not mention it again until the next time. Just another nasty that PSP threw into the mixing pot, probably due to the apathy that comes with these diseases. I never once felt that he would try to take his own life, it was just those desperate words that upset me and my inability to make him better. You live in a beautiful part of the country; just keep taking him out and don't expect a reaction or get upset about his lack of response. The better days are coming, go and sit by the sea, nothing more calming than listening to the ocean and even with his eyes closed he will hear the waves. I remember a walk I did with my husband in the Isabella Plantation in Richmond Park. He was in his wheelchair, eyes mainly shut, but the birds were in full song and the rhodondendrons and azaleas were in full bloom - it was a sight to behold. Later that day he told me he had loved the day - I was gobsmacked because he rarely strung two words together - proof to me though that he was still taking things in. Surround yourselves with friends and family, just keep doing what you are doing. It may seem a thankless task but I know from experience that they are still in there and have not lost the ability to get some joy out of the smallest things. Keep your chin up. HilsandRx

[Khartt]

I'm so sorry you are having to go through this. My husband was the same, especially early on when we were still searching for a diagnosis . He would tell me (AND the doctors) all the time he was "going to have a hunting accident". He was totally apathetic and did not want to be around anyone. After testing (the second time) with a neuropsychologist , he offered to meet with us /him for a few sessions. Even though he was already on an anti-depressant, his team of doctors all agreed on adding a second. It took a little while for it to take effect but the mood improved and the talks of suicide stopped. He takes Wellbutrin and Effexor. That was 2-3 years ago. I believe the depression goes hand in hand with this whole process! It's a scarey, mean, cruel, illusive disease!

We are now in the mid-later stages and he enjoys family and friends visiting and getting out for rides and ice cream. My thoughts and prayers to you.

Karen

[Zibo]

Dear Ruth,

my mum has started to say the same. It's nearly two years since my father died, and PSP and grief are such a difficult combination. She must be totally broken inside. I would feel the same if I was her. She was such an active woman, full of life and totally independent.

They must be so tired to be totally dependent on others and have no control over their life anymore. Prognosis doesn't help either.

I loved some of the comments above. My only suggestion is to ensure you do take care of yourself. That you do take time to see friends, to go and do somethign creative or that gives you some shades of joy in these difficult times. I feel the pain much more if I give my all to my mum.

Sometimes just giving them the empathy to say, in response of their death wish, how much they wish they could stop this agony, how hard it is. To meet them in that place of despair with empathy first, before perhaps moving them into our wishes for them.

Sending a e-hug and deep empathy.

[Ruth1921]

Thank you so much everyone for your kind and thoughtful words. Isn’t it wonderful that so many people are there to e-help and e-empathise? I don’t quite know what I would do without sharing some of the worst moments with others, especially those like all of you who understanding. Love to everyone.

[Katiebow]

Ben never talked about taking his own life but said that he welcomed death and therefore we did nothing that would prolong his life. He refused fitting of a PEG and made an advanced Care Plan stating no hospitalisation for aspiration or UTI's. Basically he just wanted to be kept free of pain as a comfortable as possible and his wishes were upheld. I know he didn't relish life and all that psp was doing to his mind and body. He had been on antidepressants some time before diagnosis as thought the apathy was due to him having some sort of breakdown, in hindsight I now know that was the disease taking grip.

Ben was initially reluctant to talk about the disease and the effect it was having on him and me, I coaxed it out of him to discuss his thoughts, usually when outside and sitting side by side as it felt more comfortable that way. By doing this I was able to really know what he was feeling and it helped me enormously when caring for him. He wasn't a man to really share his feelings so I had to take the gently gently approach.

Wishing you both well and hope that you can find some sort of solution to this horrible problem.

Sending love

Kate xx

[Ruth1921 in reply to Katiebow]

Thank you, Katiebow. You've summed up our situation in one! How amazing that you've had just that experience too, which shows that, although unique, there are many similarities with other's conditions. I know B will not want his life prolonged in any way and although he says he wants to die, I don't think he means it in a suicidal way. I just think he's really tired of living with the apathy and tiredness which is just not part of his 'normal' personality and character. Just lying around all day must be so frustrating never mind not being able to think clearly about anything any more. B needs help showering, shaving and dressing but I don't think he actually likes having someone do it for him - I can see the sheer frustration in that situation. Without the voice to express his thoughts, the frustration is doubled. I'll keep trying to talk to him gently, as you suggest. Warmest wishes.

[doglington in reply to Ruth1921]

Chris was the same.

Don't expect too much from yourself. It's normal to shout when you are exhausted and worried and doing a job you never sought. I had a mantra - saying to Chris that I knew it was PSP we were both hating.

As long as you can love and laugh as well !!

Love Jean xx

[Aprilfool20]

Hi Ruth, l have CBD ,cousin of PSP, and felt just like this until my GP started me on Sertraline 50. It took a few weeks to kick in but it has helped me to live each day and not stress about what is on the horizon. I am also now getting counselling. So I’m now determined to enjoy what “normal “ time I have left. I also sleep much better,so maybe worth a try?lots of hugs to you,Jayne

[Richard33 in reply to Aprilfool20]

Jayne,

My Ruth is also on Sertraline 50mg and it seems to be helping. I think the hospice will give her counselling when she wants it. just taking each day at a time...

Richard x

[raincitygirl in reply to Aprilfool20]

Always good to hear from you Jayne - Thank you! You sound remarkably grounded and "ok" . Good on you!

XX. Anne G.

[Aprilfool20 in reply to raincitygirl]

Nice to hear from you Anne! Feel much more motivated since I’ve got depression under control. It won’t change the inevitable but it means I can cope better day to day. I’m still helping with the research at Cambridge , though it’s a very slow process. Here’s hoping there’s a breakthrough in the( near?) future. Jayne xx

,

[raincitygirl]

Dear Ruth,

I had the same experience with hubby. I can't add much to the excellent advice here; I would tell hubby: "I love you, I would do anything to take this away from you if I could, but I want you in my life and I'd rather have our limited life than be without you - but I understand how you feel"

It's so unfair..... Hang in there!!. XXX

Anne G.