Before my husband was diagnosed with PSP last year, the family noticed a gradual unexplained decline in him. In some diseases, diagnosis can lead to a cure but we all know that this is not the case with PSP, we are told the condition can only be "managed". The day to day reality of this is that our carers roll can become a heavy burden, oh there is lots of "help" out there, but once you've filled in one form, you've filled them all in and in the end you give up and get on with it.
However, what I would love to know is, can anti-depressants really help - either my husband or myself, who prescribes them? because the quality of both our lives are going down rapidly.
dorothy
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dorothy-thompson
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Sorry you are struggling. I'm sure all of us who read this understand 'exactly' how you feel. It is not easy and sadly it gets more difficult as the illness progresses. Like you, I struggle with the caring role most days. I dare not think how much more difficult it will become. There is no escape but there is "help" out there. However, at the end of the day it is down to us and nobody 'knows' unless they have experienced this. "I" know. I care for my husband who also has PSP.
I became so "down" some months ago and couldn't focus on anything other than how difficult both our lives have become. Both daughters were aware of the struggle but are unable to give any practical help as one lives in Canada and the other in Wales (we are based in the Midlands). It got so bad that I was persuaded to see my doctor who suggested anti-depressants. Reluctantly I agreed to give them a try and I have to say, the result has been good. It takes a while for them to kick-in but one day I suddenly realised that although the struggle was still there, I was dealing more positively with the day to day care. I frequently tell myself that the burden is the illness and not my husband and I know he hates the way this horrid illness has affected both our lives.
My advice would be to go and chat to your GP. He/she may suggest some counselling and/or medication. I had counselling too and it does help....honestl! Let's just say, if you had a broken leg you would get help, so what is different about having a broken heart, and that's what we carers are suffering. A broken heart caused by having to watch our loved ones suffer despite all our best efforts to care for them.
I hope you will give consideration to going to see your doctor. After all, as you say, as carers we need every bit of help we can get, and if it comes in the form of a tablet, you go for it. I'm sure you will feel the benefit.
Take care...........you are not alone, although I know there are days when it feels as if nobody else understands..........but "I" do and so do others who use this site.
Thanks SuzieQ. Whenever I blog, I immediately feel guilty of my negative comments but there is always someone, like you, who brings me out of it. Luckily for the first time ever, I do have a sympathic GP and I will make that appointment.
Please let me know how you get on. I hope whatever advice you receive from your GP it is right for you. At least you seem to be thinking a little more positively now. Good luck to you and your hubby.
SuzieQ - always good advice and friendly reassurance from you, I did the same as you and the anti depressants do help, the GP keeps his eye on me, and will listen when i want to talk.
I agree with Dorothy. We had lots of visits from people and forms to fill in but the bottom line was that I had to do it all myself. I like you, bought a three wheeled walker so that we could go for walks by the river which was a great comfort to both of us. I felt that the psychological strain of this illness was far worse than the physical efforts I had to make every day to look after my husband. We not only lose our husband but also our best friend to this disease. I take comfort in the fact that I was always there for him and two days before he died while I was helping him with his food he said,
"Thank you and thank you for everything that you are doing for me".
Your words make me cry. I am still crying. We do lose our best friend, lover and husband before they truly pass on. It is a huge burden to care for our loved ones, but we do it because of our love and we do it the very best that we can. My husband got into a very bad mess the other day with urine and feces, and I got angry and yelled at him and then I just sat down by his chair and sobbed literally like a baby as I felt so upset for losing my temper. He put his hand on my head and said, "Honey don't be so hard on yourself" He can barely speak but he was able to say this to me audibly and clearly. He just wanted to comfort me and to let me know that he appreciates me. I took his hand in mine and I kissed it, and cried some more and I thought to myself what am I going to do when I lose this lovely person. I am sorry that you lost your husband. How have you been? I am afraid that when the time comes I will just die. How do you make it through your days? I am so glad that he was able to speak to you before he died.
I feel so much for you. I too have tried to get help and paperwork and insurance can take so long. As caregiver you struggle to help your husband everyday and then find that you have another fulltime job just filling out forms and making phone calls. The tasks can be draining and hopelessness can sink in. Perhaps you can speak to your physician and he can help you with depression before it starts to really drag you down. Do you have people that you can talk to about the illness? Do you get any time for yourself? Please take care of yourself sweet Dorothy. I know it can be difficult to do so, but ask family and friends for help. Let them know that you need respite. Someone will come to your aid. When I had finally got to my wits end I told my family that my gravestone will say "if only someone had helped", and instantly my sister stepped in to help us and brought other family members in to help us too. I know my words sound drastic and somewhat comical, but that is exactly how I felt. If I did not get help that I would die. I am reaching out to everyone now. This site helps immensely! I will say extra prayers for you, and may God bless you.
Thank you Judy and thank you to everyone. I have to confess though that words like "husband, lover and friend" - I just can't relate to them. Ours has always been a difficult marriage and with the best will in the world I want to be there for my husband because we're all human beings and everyone deserves to be cared for when it comes down to it but I find myself resenting him more and more for something he cannot help and does not derserve. I will try to be better and will go to my GP for help.
I am so sorry to hear your words. You are doing everything for him and your husband is so very lucky to have you . I had a wonderful career that I would readily put 80 hours a week towards, and I gave it up for this job. This job is more difficult than my paying job ever was! PSP steals your husband's life but it steals your life too. Even though I have loved my husband for 31 years, I too find myself resenting him for all of the mess we go through both day and night. I try to remind myself that it is the PSP and not David that is causing this. You are a precious saint to be giving your husband the wonderful gift of care giver. Not many people would do it. I have found this out from many people since I left my life to care for Dave 24/7. Like my husband has said to me, "Don't be so hard on yourself". You can't do it alone and eventually the help will come. I find it most helpful when I can get away. I will pray that someone will reach out to you and you to them. God bless you sweetie. Keep strong and hold onto any hope that you have.
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Hello from Indiana, USA
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