GUILT

[PAT0]

My ex husband (we separated after 43 years -amicably) suffers with PSP. I have been his carer for the past two years but he is now in a residential home. He appears to have settled and I know that he is in a safer place as his falls had increased and his eyesight is so poor he is virtually blind. Unfortunately it is me that is not coping if I don't visit every day or take him out I feel terribly guilty, I just cannot bear the thought that he is in his room 24/7 with just the tv and his radio (which he often presses the wrong button and then is unable to listen) Friends and family are very supportive and say I should make time for myself. Unfortunately I feel that not all the staff at the home are aware of PSP even though I have printed material from the PSP site and passed to them. I think I would feel much happier if I was sure that they understood the effects this awful illness has on the patient.

[jennifer-nind]

Hi Pat

Dont feel guilty you are doing your very best and dont beat yourself up. Have you joined the PSP Association, they are a great source of information and if you contact the Nurse Specialist for your area she may be able to make an appointment to visit the care home and give the staff some training on PSP.

Jenni

[judy1962]

Dear Pat,

I know what you mean about the guilt. I feel guilty if I leave my husband with someone for the day. Try to remember that you are trying to do the very best for him. You are still healthy and you need to remain that way. You visit him and he is not even your husband and you should be commended for doing so. Just let him know that you care about him and talk to him. He can listen even if he cant respond.

My heart goes out to you and I hope that you have someone to talk to for support. Does he have any family members? Can they take turns visiting him? Take care of yourself and God bless you.

Judy

[jillannf6]

hu pat

i am divorced from my husband after 33 years of marriage but we are friends now.

\i have PSP and i think the "reckless" natuure was comign on prior to our separation.

i am muoch happier living onmy own and he helps me out when he is around

love jil

ps we did not have children which i think is a blessing as they doi tno cope easily wiht the decline with this psp

[PAT0]

thank you all for your comments which do help, I am a member of the PSP Assoc. which has taught me so much and I am organizing a concert in Skipton in October to raise money for research. My thoughts are with you all

Patx

[kay1]

I suppose one day we will be free of the guilt feeling. several falls and injuring both of us he is now in care home, special bed, speech therapist, and physio arranged to see him, i am torn between seeing him get on so well and the guilt of leaving him when i come home. He asked yesterday when would he be "released", how do i answer that????

[PAT0]

Kay , how do you answer a question like that? I don't know which is worse I often cannot understand what my ex husband is saying especially when he rings me on the telephone, his speech therapist is going to try some new ways of communication this week, it must be so frustrating for him not to make himself understood but he is remarkably patient. My other concern is that he is very aware of his coughing and some of the residents have made comments at meal times so that he now feels he would prefer to eat in his own room which would then mean know one is present when he is eating!

[Hidden]

Hi Judy

I answered your note to me yesterday but it doesn't seem to have gone through.

Perhaps I clicked on the wrong thing.

Sorry about that.

Lina