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PSP Association
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Emotional suport

I used to think that stress was something that other people had until I began caring for Mary. The simple thought about a future without her would have me in tears and I was disgusted with myself for be unable to control my emotions. A typical male response I am told. In the end, after a meltdown caused by something simple like Mary emptying a cup of coffee down herself just before I was due to take her to the Hospice Day Care centre. After a private, and emotional, counselling session with the Day Centre nurse I was persuaded to go to my GP and seek help.

My GP prescribed a daily dose of 20mg Citalopram which has had a profound effect and I am now able, under normal circumstances, to have an adult conversation with the health care professionals as well as friends without bursting into tears. I should have sought help earlier because my emotional state must have affected the care I was able to give. All seems better now. Rob

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Don't be hard on yourself. Being a carer for my dad was probably the hardest thing emotionally and physically I've ever done. Last fall I was really getting exhausted trying to juggle dad's and my family's needs/wants so after many discussions, including the doctors, it was decided the best course for everyone was a nursing home.

We do what we can and just hope it's enough.

Ron

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Hi Rob

I've been there too.

I think many of us have.

Caring can be both emotionally and physically exhausting and the result is as you describe.

We all have different limits for different things. It is just how we are.

I reached my limits with Liz last winter. Her behaviour was such that I could no longer manage even with carers coming in. She inevitably had to go into a nursing home. I felt such a failure at the time. Then the Nursing Home upped its fees because they could not cope with normal staffing. We carers do an incredible job and it takes its toll.

I hope you get a good respite - We all need that.

Warmly

Kevin

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The physical and emotional stress takes its toll. Crying is a good release. Glad the medication helped.

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Thank you

Rob

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Bless you Rob! Keep talking to us too, we all completely understand! You men do tend to keep stuff to yourselves, don’t ya?! Well don’t! A problem shared and all that....hugs x

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Well done Bob. Admitting you need help, takes some serious guts. Unfortunately we all have to crash before reaching that point. The more we all tell our stories on here, hopefully anybody new, will get the message and not reach breaking point. You are right, your caring skills would not have been up to scratch, before. Hopefully, now you can look after your wife, in the way she deserves and that it includes practical help as well as emotional support.

Lesson guys, if you are not functioning at 100%, your loved one WILL SUFFER. You MUST accept, you need help, nobody can do this alone. Not even Superman/woman!!!

Lots of love

Anne

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Brilliant reply Anne!!

All, please take note, Heady is 110% bang on correct!! X

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Yes Rob we have all been there, a good cry is good for all of us. Anne is so right xxxxx

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Well done Rob: I applaud you for your openness and sharing your caregiver experience and its emotional impact. I think men may have a tougher time, sometimes because society teaches them to "stuff it down". Your post will stand as a great example to others who search now :-)

Hugs and support XXX

Anne G.

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Thank you and everyone else, it's certainly been an experience worth sharing. If it helps other men to swallow their pride I was a Marine for 27 years so even Marines can cry! Rob

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That's saying something!

You have everything you need to make it through this Rob: emotional intelligence, practicality, strength, love...

...and you have us :-)

XXX

Anne G.

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Dear Rob

A brave man indeed. Caring for a spouse/parent with PSP is emotionally exhausting and no one can do this alone. We all have to find what works for us as individuals. I see a counsellor every 3 weeks and ditch all my guilt and rant at her which I find helpful- might be worth thinking about too. I. cane to the decision to seek help after a neighbour found me crying in the supermarket - overwhelmed by the choice of carrots I think it was!!!

Take care of yourself

Love Tippy

Xx

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Many thanks. R

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I spent a long time with a Counsellor as well. I know it helped. Having that safe place to rant and cry in. Got rid of most of my anger.

Lots of love

Anne

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Rob, it's also thoughtful of you to share just what helped, not just that you went to the GP, but what he prescribed.

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Rob,

I am where you were before you spoke with your GP. You describe a situation that is all to familiar to me. Your post has spurred me to do the same. Thahnk you friend. I need help also

It is like the story about how to boil a frog. You put him in cold water and slowly bring it to a boil. He will continue to sit in the water. If you however drop him in boiling water he will jump out. I was in cold water 6 years ago. This awful disease has slowly taken away the life of the woman I love. It has impacted not only my wife and I, but also our family and friends.

You are definitely not alone,

Bobby

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Bobby I know how you feel and you have my sympathy. I quickly realised something was very wrong when I found myself sobbing in public places and whilst driving. The smallest things set me off. The travel brochure through the door, the plans and promises made. Stress and tears were for lesser men! Realisation was what saved me and I would strongly recommend seeking help before it's too late. Rob

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Thanks for sharing this Donna I can only offer my support and sympathy. Fortunately Mary has remained kind, loving and compliant (wrong word but I couldn't think of another). The lack of sleep is an issue but even when we have cover I don't sleep soundly. Rob

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Hugs to you Donna. I sympathize so much with the exhaustion!!

I also understand the need to take an emotional step back from your spouse: he has a right to his anger for his circumstances but you need to not "lose yourself" in him or the disease - ypu have to maintain "you" however that happens.

Hang in there and get that sleep!!

XXX

Anne G.

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Thank you Anne

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I, too, found counseling invaluable. When my husband (of 56 yrs) lost the desire/ability to participate in decisions affecting our lives three years ago, I turned to a family counselor who has been enormously helpful. Taking care of someone with PSP is not something you can do alone. She has helped me make decisions such as whether I should keep or sell our RV which we weren't able to use anymore. I sold it even though it made me cry because it was the right thing to do. I'm now in the process of selling our "dream" home that we built at the lake 15 yrs ago so that I can be closer to services for myself and closer to my husband's care home to make visiting him easier. I think I need to see her again!

If you're caring for someone with PSP use whatever resources that are available to make it doable whether it's citalopram a.k.a. Celexa, hospice or counseling. This is no job to do alone.

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Many thanks for your advice. I have been offered counselling but, as with all to do with our health service I would join a queue and I don't think my wife will survive much longer so I will focus on her for the time being. Rob

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Dear Racin,

Could I just reach out digitally, hold your hand and grieve with you for a moment?? I/we were RV'ers too! I LOVED the gypsy travel life, and one of the great trials of caring for hubby at home is the confinement, the small circumference of our life now :-(

I usually cite 2013 as the start of symptoms for hubby's CBD, but my sisters say "No way - it was 2012" when he abruptly stopped RVing and I had to sell the RV as (I didn't know why at the time-) he just couldn't seem to do it..... They knew how much I loved RVing and thought only something really strange would have brought G to stop it and stop that life we enjoyed.

Nice to chat with a fellow RVer here :-)

Anne G.

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Dear Rain a.k.a. Anne, They say it takes one to know one. I always felt as at home in the RV as I do in our home. If I'm not too old and decrepit when this is all over, I'm 77 now, I think I will probably buy another small RV that I can easily handle because I don't think I'm done exploring. Maybe I'll take you with me! One can dream.

Pat

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A widowmobile!! No kidding...Before Hubby got ill I used to joke that when he passed (he's 13 yrs older than me) I was going to get a RoadTrek or one of those Mercedes Sprinter vans and hightail it ;-)

Count me in!

Anne

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Rob,

It is good to hear the citalopram works. Ruth has been on antidepressants for a couple of years now but I have thought I would never need them myself. But as time passes the stress is slowly building like Bobby's boiling frog analogy. And clearly I cannot afford to fall apart (or become a full-time alcoholic rather than a part-time one as now!).

Richard

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Hi Richard, they are not addictive and you can go on and off them as you need but take a couple of days to begin working. I too continue to enjoy my medicinal Scotch! Rob

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