Journey through this one day at a time

[Mtorres9235]

Husband is rounding 11 years with CBD. Lots of blessings and hard times with being his caretaker. Need to find lots of caring people to help, otherwise impossible to deal with. Loads of prayers and support to those who have this and are trapped in their bodies and also those who care for them. With love and faith we perservere

[daffodil48]

I am soooo sorry. and 11 years OMG!!! My hubby is only 3-4 years in with PSP. You have come to the right place for support and advice and to vent. Everyone understands. xxxxxx

[Yvonneandgeorge in reply to daffodil48]

Must be very hard for you, my husband has psp diagnosed in 2014, hard day and evening, banging his bed rails since 7.30 until 10.15 hard evening sorry to say I lost it xxxx feeling bad now xxx

[Heady in reply to Yvonneandgeorge]

Come on Yvonne, we have discussed this enough! Two people suffer from PSP, one has the symptoms the other has to deal with them! Neither are responsible for their actions. I understand you feeling bad, but you can't help your response any more than George can help his frustrations. Instead of feeling guilty, be proud of yourself to be caring and looking after your husband as well as you are doing.

Sending big hug and much love

Lots of love

Anne

[Yvonneandgeorge in reply to Heady]

Oh Anne thank you after last night what a horrible night George so agitated, pulling me and getting upset, I lost it big time last night, he said he wants a divorce, spoke to the night district nurse crying it was so hard last night, he started again at 3 o’clock banging the bed for a while, this morning he didn’t want to go to the centre, he wanted the phone and telephone book to ring the centre, it would of be a miracle for him to do that, he went in the end been a treat full day. Just chilling out today xxxx

[JantheNana]

I am a widow now for just over a year.My husband passed away from PSP in July last year. I am trying hard to remember the good years with him (51 of them} instead of the bad ones,only 2. Sometimes I am successful,sometimes not. When I dwell on those bad years I begin to feel sorry for myself and resentful that our golden years turned out to be as they were. It makes me feel robbed. So I hope as time goes on I can remember those good times more and more and the bad times fade away. Blessings to you!

[doglington in reply to JantheNana]

Same here, Jan. Chris died last October.

I know how it feels. It was such a hard time during those years.

For the last few weeks I have begun to remember the earlier days and have found it really painful. Its as if now I am grieving the loss of the golden years you describe.

I am aware that we were lucky to have more time together than some on this site but that doesn't actually help.

A supportive hug from Jean xx

[raincitygirl]

Dear Mtorres,

Gracious - That is a long time for CBD!. I lost my husband to cbd this past July, but after only 5 years (but who knows when it really started??)

If you wish to share more about his diagnosis and when it all started etc, please do. I'm still very curious about this disease no one knows anything about!

Do you have enough support now?

Take care, we are here for you xxx

Anne G.

[Mtorres9235 in reply to raincitygirl]

This disease is very rare and hardly anything is known. Our path started many years ago when he started to lose control of his hands and feeding himself. We spent two years prior to his diagnosis going from one doctor to another and emergency room visits when the tremors were going on. We almost lost himbecause of malnutrition about 5 years ago and at that time we were given the option of a feeding tube. He wanted it and it saved his life. He put weight back on and recovered but the disease continues to be relentless. He loves music and so we love listening to music and being with his family. We are blessed in that we have three children who take turns helping on the weekends. Recently he has been super tired and so I will support this lovely man as long as he wants to continue to fight. When the time comes I hope he continues on his faith journey. He has such deep faith that we both believe in the 23 rd psalm” Yea, though I walk through the valley of the shadow of death, I will fear no evil; For You are with me;;Your rod and Your staff, they comfort me.” This is what comforts us. Is it hard? Yes, it has been 10 years since the diagnosis and we still help him walk a couple of times a day. I think this also is crucial. We have tried many drugs but they make him a zombie. So we control his tremors with Keppra 3 times a day. Thanks for your support. Not looking forward to losing him but want him to be free of this entrapment.

[raincitygirl in reply to Mtorres9235]

Dear Mtorres, I totally understand the emotional dilemma of caring for a loved one trapped in degeneration: you want him to be free of it - and naturally, yourself free of the difficulty and worry - but since there is no (yet) cure, the only release is death! It is a brutal thing, because how can you wish for that? You don't! Yet, you go through this emotional cycle... I certainly sympathize from a deep experienced place!

You sound like you have a really good handle on things: I believe you're right about keeping him mobile: I don't know if it delays the end, but I truly believe it can keep them closer to a "normal" life right up to the end. I know that hasn't been some people's experience, and for that I'm truly heartbroken - but long may it last for you two!

Hugs XXX Anne G.

[Mtorres9235]

Thanks but of course I have been through many ups and downs. I feel most sorry for my daughter who has stayed at home( and works full time) to support us emotionally. I want her to move away to have her own life away from this and at the same time I love her support. I am so glad we have found a pace program who sends out loving, caring CNA’s who make all the difference. It is still a hard job but one with such opportunity for spiritual growth and wisdom when you have found enough help that you can take time for yourself as well. But it has taken us 5-6 years to find that balance and it is still in flux.