I used to be able to cope with anything life threw at me but since my husband Frank has had PSP ( diagnosed 2007 ) I've turned into a snivelling wreck most of the time. I love him so much but am so nasty to him when he won't do as I ask or won't eat or anything really. I know it's not his fault but I now cry openly in front of him....with anger & frustration. He deserves so much more than I am giving. I try to do my best but I don't think it's good enough. PSP has turned me into a horrible person & I don't like that person.
Our GP asked me a while ago if I thought I was depressed...I completely denied it but now I'm not so sure. The thought of antidepressants fills me with horror but if they can change me back to a loving wife & nicer person, maybe I should give them a try.
Does anyone have an opinion on this ?
Take care everyone & although I'm finding it very hard, try to keep smiling.
Love Hazel B xx
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hazelb
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i feeel for you ,as apsp sufferer, you as a carer to Frank have an impossible job!
an anti depressant would help - i have taken differnt ones on and off for the last 35 years and finding an appropiriete one is not difficullt as there are so many around now that do lift the mood wihtin a few weeks and make it easier to cope
do you have bad anxietyas well?
u do need to see your gp or even a aconsultant to deal wiht this probelm now.
I have been on anti anxiety tablets for a couple of months now,as I was beginning not to cope,it was all so overwhelming and I was so tired,not sleeping.It is a very lonely place ,looking after someone with PSP and relentless,extremely frustrating. It eats away at what you felt about that person,too. Give them a try,you have nothing to loose, I am a very strong coping person and never wanted to go on anything, but I was becoming ill myself, then I cant look after my husband.You dont have to be on them forever, just to get you back on an even keel.It is a very difficult and depressing illness,as you loose the person you love, long long before they are really gone.
I think you should give them a try, they are not like ages ago when they were addictive, there is a range that the Dr. will look at for you, takes a couple of weeks to get into your system, but i am so sure you will see a difference.
Absolutely!!! Give them a try. My Dad got to the end of his tether and finally admitted he was depressed when he woke up at 2 a.m. one night crying his eyes out for no good reason he could think of. He went to the GP and saw the practice nurse who did a depression screen on him. On a scale of 0-9 he scored 9!!! He is on Citalopram now and is a changed person. I hadn't really realised how low he'd got until I had my old Dad back!!! At first he had a couple of weeks of slightly unpleasant side effects and was tempted to stop taking them but after talking to our PSP nurse we persuaded him to continue for at least 2 weeks, at which time the side effects magically disappeared and now Dad freely admitts that he feels SO much better. He is now able to laugh and joke with Mum and tease her a bit, which is something he always used to do. Even Mum seems happier and responds to the teasing.
You've nothing to lose by giving them a try and, in my opinion everything to gain!!
DEFINITELY. I can't say this enough. I always used to be of the 'fresh air and exercise' approach to combatting depression and was really anti taking any form of medication. I went to my GP in desperation a year or so ago, and she put me on Citalopram. I haven't looked back. They make me feel normal for the first time in years, I'm not on the verge of tears at the slightest thing, and I'm much more able to cope with Mum's emotional swings and frequent bouts of frustration and despair.
On a related note - my Mum is on them too now. She was stubbornly against it for the longest time, and after trying one that disagreed with her, we've now found one that works and she too is far less inclined to cry at the drop of a hat. A side benefit is that it seems to have cleared up her night-time incontinence, too (I know that low doses of anti-depressants are sometimes given to help bedwetting, so I'm sure that's what's doing it for her).
Thank you all so much for your replies....I know it's hard to find time to go online so I really appreciate that you took the time to read & reply.
Citalopram seems to be the one you find best. How long & how many did you have to try before finding the one that works & how long have you been on them ? I'm still very wary but PROMISE I will have a word with our GP.
As for the Davunetide trial....Frank has been on it for just over 4wks now but nothing significant to report. His limbs especially arms actually seem to be stiffer so am waiting to hear from his SPRINT team about possible physio. We've had a difficult morning so far...I had to help the Carer ( not his regular one ) to get him up this morning. Mind you she is 6mths pregnant!!!!!!!!!!
Last night I even had a shot of Brandy before I went to bed....that's how bad I was !!!!!
Citalopram was the first one Dad tried. From talking to nurse friends and doing a bit of background reading it seems to be one that produces less side effects. Dad had hot sweats and a slight feeling of "muzzy headednss" for 2 weeks when he started taking them but that all stopped after 2 weeks.
I take 125 mg. of ametriptyline and 100 mg. of trazodone before bed to help me sleep. I think they help because I wake up at the usual time of 6:00. They may help you too. It's worth a try anyway.
You should definitely talk to your GP about the possibility that you have depression and the treatment choices. Drug treatments can be very effective as can talking therapys. Becoming a full time carer can be one of the most stessful things you can do. You need also to talk to your GP about respite care to ensure you have a break from caring.
FIRSTLY..you are going through such a hard time at the moment, please please please do not blame yourself for how you are feeling. It takes a lot of strength and bravery to care for your husband and everyone around you will know what an amazing job you are doing. It is only natural for you to get frustrated, as I'm sure your husband will feel sometimes.
I had a bad time with it all recently and was a snivelling wreck too! What I would advise is to tell your doctor everything. Even if you think it's silly, like I had to tell him that I cried when I tried to put something in my bag and it wouldn't fit. I have been taking 20mg of Fluoxetine for over 6 weeks now and just recently I have felt their effect. As daunting as it sounds I would definitely try anti-depressants, and the way I see it is it wouldn't do any harm taking them with everything that's going on-something as a backup.
I hope this helps, you can private message me if you want to
Although totally against taking them initially we managed to persuade both my mother (the carer) & father (CBD sufferer) to speak with their GP about taking anti depressants.
I wouldn't say we saw immediate effects but gradually my mother was slightly less tearful & found she was able to be a bit more open about the struggles she was facing.
As for my father - he had slipped into such an awful place, they seemed to have a huge impact - making him appear less mournful.Teh grandchildren got 'the old grandpa' back for a little while.
It is now nearly 6 months since my father died & my mother is still taking the tablets (ametriptyline- I think) to help her through.
Please dont feel guilty; you know you are doing the very best you can. We all know what a pig of an illness PSP is. There were times looking back, when I gladly wanted to 'throttle' my husband. I even felt one day like pushing him down the stairs. Yes, truly I did. On that occasion, how on earth I stopped myself, I will never know. I just felt as though I couldn't cope any longer. He seemed so ungrateful and would never do as I asked ( or perhaps, as I demanded... ) I would yell and scream at him and then cry my eyes out afterwards for being so horrible and hateful to him, this man I had loved so much for 36 years. It happened so many times when he was about halfway through his illness. (His being cantankerous; and even violent at times, turned out to be just another one of the stages he went through and thank goodness it didn't last).
You get tired, worried and exhausted and even though you are trying your hardest they never seem to cooperate do they. It's no wonder you are feeling totally at your wits end. I am sure so many of us have been there - remember you are not alone. The air would be blue in our house at times as we both yelled and screamed at each other. (Something we had never, ever done before PSP struck). I can chuckle a little now, but at the time I felt so desperate. Do ask your GP if he or she could prescribe something for you. Many of us have been in your position and sometimes a mild anti-depressant is all that's needed.
I note your husband has carers so that's good but perhaps you could increase their visits or maybe have an overnight carer one night per week to allow you to try and sleep? Crossroads for Carers are an excellent organisation who can lend a hand.
Eventually though, my husband went into a residential care centre for neurological diseases in Nottinghamshire, which was fantastic - for both of us. He loved it there and when I visited thereafter, there was no more stress. I was no longer tired and worn out and we both looked forward to my visits. I took over his care for three or four hours each time, three times per week and we had 'quality time' together which I will never forget.
My doctor was offering me antidepressants for about 4 years before I finally agreed to try them. I have been happy with the first one he tried. I feel normal- not spaced, or wooly, or sick- just like myself. I also use anti anxiety medication as and when I need it- when my tum clenches and I start breathing too quickly!- but only then.
Hi everyone....well I've done it. I went to the Dr on Wed, cried almost as soon as I sat down & said I'd changed my mind. After talking to her for a while she prescribed 20mg Fluoxetine x 1 daily. She also talked to me about respite care but I'm not sure how to broach the subject to Frank. She then said she will visit us at home in a couple of weeks to talk to us both. Before I left I had to complete a Depression questionnaire but don't know what my score was. I've told Frank I'm on these tablets but didn't get much of a response. No surprise there !!!!!
When we approached respite care with Dad, we told him what the doctor had said, that we need a break for a week or two. I know respite care sounds horrific but the people are lovely & we have had no complaints for the 6 weeks (in total) Dad had been in.
Yes you need to try the antidepressants. I could not make it with out . This is a horrible sickness without a good ending. My husband has been really angry lately and hard to deal with. Hope you get some help. God Bless
Hazel, it’s so difficult but people out there will help if only you voice your thoughts. You really must first talk to your GP. One of the best medicines is Put nice memories, phrases and photos of your loved ones*: Fill your fridge, your computer, your desk, your room, YOUR LIFE of beautiful memories.Try this it helps knowing there are great moments in life and they come unexpectedly!
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I don't know where to start.
When/how do you tell someone that PSP is terminal?
How do you know that your are doing enough?
