I keep thinking about me before this illness to my husband and me now..what is the "meaning" of this? If there is one. Have I changed? What have I learned? A powerful experience has powerful consequences; like being in a war. Life before and life after. I know that I am a better person now than before. I've learned a bit of humility and acceptance. I've experienced a level of pain that I had always been afraid of before. I've learned what love is and the limits of love; I've learned that I can be stronger than I ever thought I could be; I've learned about true friends (not necessarily the people I thought of as friends); I've learned to enjoy moments without always planning for a goal or a future. And I have also in some strange way have developed the ability to wait, watch, be patient, alert, and open without blindly charging ahead frightened and depressed when I face the unknown.
Sunday thinking....
Jill
Costa Rica
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zjillian
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Wow Jill -I only hope I can learn from you -at the moment I just feel so angry most of the time that this illness has robbed me of my lovely wife and the happiness I hoped we would have in the latter years of our lives together.Perhaps its the initial shock and I shall come to terms with things and see life in a new light . I really value what you have written and it has given me a lot to think about -thanks .Georgepa
Georgepa I can relate to what you are saying about the anger. Hopefully you will get thru that stage ok. I did go thru a stage where I was so angry about the situation and when I realised that it did neither of us any good I tried to get rid of it (very hard). I do still get angry moments but I try to get out of sight of Brian and explode.
I still rebel against each new symptom and every time theres a decline in his health.
Before I see to Brian in the mornings I stand on my doorstep take a few deep breaths and say good morning world not sure it helps but it can't hurt. Take care Janexx
Hi Georgepa, how many times did we say, "when we retire we, we will.......". My husband was diagnosed in his early 60s. I used to think my travelling sons didn't think enough about the future but now I encourage them to do what they want now, not wait. I do hope the anger subsides and Before winter sets in, you can enjoy lots more beautiful walks.
Oh yes the anger...Sometimes I think of it as jet fuel..and blast out into the world, cleaning cleaning cleaning the house. Maybe that's always been a woman thing but in the past of have used my anger to overcome my fear. With fist raised "I will never stop never give up" and as my father said when his Parkinson's was finally bringing him down "Surrender is not an option".
Hi Jill, I am also thinking a lot along the same lines as you although I have yet to reach similar profound conclusions. I have become much more practical after a lifetime of leaving anything involving tools to Chris. I am now a dab hand with a screw driver although have avoided power tools so far - innate clumsiness has to be respected. Worst thing about the PSP as far as I'm concerned is that it has made Chris very withdrawn so he no longer takes part in conversation and I would love to discuss things like this with him. And as you are in Costa Rica and I am in Turkey I am also wondering if our mutual benign climate, good food and affordable health care leaves us with time enough to ponder such things. When I read posts on here from PSP sufferers and their carers in UK I do wonder how they cope with all the form filling and NHS/Social Services involvement, not to mention the appalling weather. Anyway enough of this as it is time to get C up and give him breakfast. We had a grey rainy day here yesterday but the sun is shining again this morning and the garden is very green and fresh. Bliss.
How exotic..Turkey! The stuff of dreams. Yes the climate is so important. We moved here 7 years ago when I was taking care of my father and my husband and another winter in Massachusetts was unthinkable. The move was terrifying, but it was impossible to keep living in the USA, no help, no money, bad weather, isolation because everyone else was working to pay bills and get out of debt. Everyone thought we were crazy to move but it was the best thing I ever did and still marvel that I had the courage to make this move.
We live in a small Costa Rican farming town in the mountains above a small city. Our neighbors are all Costa RIcans and we are more involved with Costa RIcan then the Expat community which is strange and inbred. We have slowed way down and are learning how to live from the Costa Ricans. That life is life and it is good then bad then good and you ride the wave with dignity and forbearance.
Jill
CR
Hi Jill, I am also thinking a lot along the same lines as you although I have yet to reach similar profound conclusions. I have become much more practical after a lifetime of leaving anything involving tools to Chris. I am now a dab hand with a screw driver although have avoided power tools so far - innate clumsiness has to be respected. Worst thing about the PSP as far as I'm concerned is that it has made Chris very withdrawn so he no longer takes part in conversation and I would love to discuss things like this with him. And as you are in Costa Rica and I am in Turkey I am also wondering if our mutual benign climate, good food and affordable health care leaves us with time enough to ponder such things. When I read posts on here from PSP sufferers and their carers in UK I do wonder how they cope with all the form filling and NHS/Social Services involvement, not to mention the appalling weather. Anyway enough of this as it is time to get C up and give him breakfast. We had a grey rainy day here yesterday but the sun is shining again this morning and the garden is very green and fresh. Bliss.
Hi Jill, yes, like you, I have changed! I hope it's for the better. As Pattz says in her reply, I now can do loads of things I wouldn't have dreamed of doing before. Some even work!!!
I think I am a lot stronger and ten times more thick skinned, although, that worn a bit thin this week, there only so many times you can be told to "run away and play" in good old fashioned Anglo Saxon and not get upset!
Georgepa, don't worry, this will all come naturally to you. When I first joined this site, I was very impressed with the way people were coping, now I realise, we are all coping in our own way. We all have good days and we definetly ALL have bad days, when we are so angry and bitter with life! You just learn to direct that anger to actually achieving something. Getting the washing, ironing, gardening, etc.etc.etc done. Or better still, fighting the powers at be, to actually giving you some help, rather than keep offering it!!! So fed up with professionals that say, call me if you need any help! When I ask what help they can give me, well ...................!!!
you are great to have put into words what all of us are thinking!1
i fully see where you are coming fm but georgepa you need ot see that it could be a lot worse: your wife could have died suddenly ( the cat is typgin for em at he moment and wants his breakfast)
i do not know what the others think but i have been so relieved sisnce dxd tha ti hav e condition with a name and am not making things up
but it si difficult to accept the many falls a day i know that and so distressing for my partner when i do fall an hurt myself and my speaking is getting worse and worse so it is only a matter of time b4 he cannot understand me at all , nor anyone else for that matter
so i am having a bi g party 4 my 69th next february rather than waiting until my 70th when i may be in a much worse state than i am in now (and the £ raised rather than presses will go to PSP)
positive thinking or desperate thinking?
i do nto know the answer but am try gin to be a beacon for this PSP and am singing in the HYMNATHON on wednesday19 november 4 the choir funds and for PSP too, despite having to eb in a wheelchair to do it!
and i am os glad that the choir has chosen OUR charity to support
Hi Jill, i'ts so good to see you so positive on a Monday morning and long may you be so. It would be great if someone could film you all singing in the choir and post it on Utube. I really want to see and hear you. If they do, please let me know. If I lived nearer I'd come and see the performance.
The falls are an impossible part of this illness. I was really at the end of my rope when Bob was falling and falling and falling. I really didn't know what to do. I needed to have a strong person around to get him up since it was way too hard and dangerous for me and my aging back. And the wheelchair was impossible to use on the sidewalks (not really sidewalks although they do have curb ramps) of Costa Rica which are holes and stones and cracks and bumps. You are brave to sing in a choir. I did once and really just moved my mouth along with the words because I never knew what sound would come out and didn't like the surprises.
Jill...I love your thoughts,many caregivers over the years have asked how I can possibly do this....it,s with God,s help and my love for a person who needs me...Rollie
Wow Jill, you have described my thoughts so well. I also think about how our lives have developed to where we are now. 30 years ago I started cleaning in a care home to give me a break from my 3 young sons. After 2 weeks I was asked if I'd cook for 40 instead and very soon after that, if I'd work a couple of nights a week as a carer. I remember one night, after changing yet another wet bed thinking, how did I get here and why? Years later I cared for my mum with Altzheimers, then my dad and now my husband. My early training and experiences prepared me for now. When I had to find a care home for my mum when she was 89 and 14 years into Altzheimers, I asked my boss for time off work, adding at the end of the email request, I have no desire to be a full time carer. I remember that statement every day. We have a friend at our church who has sever cerebral palsy. He is in a wheelchair, has a PEG and convene and is very difficult to understand. We often sat with him and I'd help him with his jumper if he was too hot, empty his convene bag, take his collection money out of his bag and wheel him up to communion etc. My husband couldn't speak to him apart from saying hello. He said it was too hard to understand him and he was embarrassed when he had to keep asking Michael to repeat things. He would make sure I sat in the middle so he didn't have to sit next to him. My dear husband was so sociable and was on the welcome team for 17 years but could not relate to Micheal. Now, when we go to church, I look at them both in their wheelchairs, Micheal awake, smiling, trying too communicate and Colin sitting with his head on his chest, eyes closed and not communicating and noticing those who have known him for years but avoiding him through embarrassment, fear etc.
I think there has been a plan to our lives, difficult to understand the cruelty sometimes but the pieces all fitting together like a jigsaw, some pieces missing but I suppose it will be completed at the end.
when I look back it seems to make so much sense. All of the bad things always led to good things and made sense. I have rethought so many things in my life looking back from the vantage point of 68 years. I see my parents so differently, the coincidences, the "luck".
When we first moved to CR my father lived with us. He was in his late 90'S and in end stage Parkinson's. Bob was truly terrible to him. He hated his infirmity was jealous of the attention I gave my dad, and tormented him in subtle and not too subtle ways. And now he is worse than my father ever was. I feel that he doesn't deserve the care he is getting now since he was so uncaring for my father. I think it was Bob's PSP that was behind the bad behavior but the irony does not escape me.
I too have always been a care-giver from my first job as a nurse's aide at 18, to my last job before our move as a caregiver to cancer patients. I would like to stop this and find another way of being in the world. I am very tired and wonder how I entered this path and maybe there is another job opening I can apply for.
I think that is one of the big questions and as far as I know nobody has given it a satisfactory answer and there are lots of answer given. But suffering there is and some is off the scale and no matter how hard I try it is impossible to avoid.
Thank you for your reply groovychick...I thought I was the only one who was still using "groovy". But it really says it..good words should be adopted and cared for.
Jill, Thanks for this very insightful posting. Great the way you describe our experiences. We can all relate to your post. The range of emotions that we experience in dealing with PSP are some that others will never face or know. It's like a private club with unique hazing to enter and recurring costly dues collected to belong. The club has many benefits that we receive like emotions that others never get to feel. Love, patience, long suffering, humility, how to serve, how to appreciate, and so much more. Although we never forget what we've learned at some point we pay one devastating exit cost. We are, and always will be unique. HUGS, Jimbo
Hello, Jill, We were in Costa Rica a year ago, just after my husband being diagnosed. I wish we were there this year!! Its still a struggle to accept what is happening. I have learned to be proactive in getting help, but to tackle things myself. But mainly I grieve to see the change in my husband and cannot see any positive for him. He is brave and loving and stoical but I knew all that anyway. This disease is really testing our relationship and I am not such a nice person as I'd always hoped. I never wanted to be a carer. It doesn't use my strengths ! The blessing is that Chris was diagnosed at 80 and we had lots of travelling in our retirement. Loads of shared memories. Spending money on home now. Its hard. Jean
Oh Jean, you've said it for me! I'm also very sorry to find I'm not as nice a person as I'd always hoped. It's hard to face up to it, especially since my guy is also brave and loving and stoical. Last week was a really rough week for me, and he got the brunt of it, and now I'm so sad that I added to his burden. He deserves only the best, but what he has is me, and it's rather too late for him to go chasing after someone better. On we go. All the best to you, Easterncedar
I know. I had a cold last week so had no reserves. Chris felt bad and wanted to support me but couldn't physically help and I am so aware that I have to be there. There is no plan B. The stress makes me anxious and then the reserves are depleted. He feels bad. I feel bad. I feel ashamed of behaving in a way that increases his feelings of failure for not being able to care for me. I am tired and overwrought. [the house is upside down as we have builders in to adapt for his future needs] I feel overwhelmed and resentful at having to organise everything. He feels bad again. Its a merry-go-round. Thank goodness I am generally healthy.
Sorry for going on. We manage well really but its tiring !
I am full of admiration for those on this site who are further along the road.
I think that I labor under the delusion that this is some TV show or Movie and I'm supposed to be so cheerful and loving like a TV movie nurse. Or even a hospital nurse is a bad model for us, they get paid and they also work 8 hr shifts and go home and get days off and sick leave and maybe even retirement pensions and at least one good party a year.
I also see no positive for my husband. He is in a private hell state and is miserable, angry, and confused all the time. His dependency feels so panic driven...The not being a nice person should not be focused on. I get furious with Bob and am too old to be stronger when he frustrates me. But that also passes. As he passes from stage to stage he gets easier to be with. For him the progression has made it easier although at the same time worse. The memories now are bitter sweet and feel more like grieving than pleasant reminders of a good life. My continual fear is that I will forget the man he was as the man he is, is not so easy to love.
I feel the same. The man I grieve at losing is very little like the man I care for in some ways. I don't want to lose the memory of the strong, energetic, enthusiastic man. He is more dependant and that is very difficult for us both. Jean
I think the worse part is to feel that this is really how he always felt and I just didn't notice or wouldn't admit it. That is a powerful feeling that I can't escape. Was he always so selfish and demanding? Was he also so mean? Was he always so lazy and unhappy and I wouldn't focus on it? The present feel so real and it is so hard to hold on to the fact that it is the disease that is doing this and that he is helpless to control his behavior.
I think everyone has a mean bit ,which we hide with varying degrees of success, but P.S.P. releases the inhibitions. So my husband is more of a selfish child. What I find more difficult is where the nice bit goes . The balance is all wrong now. We have been married 51 years so I have plenty of certain memories but sometimes its hard to hold them. I will remember tomorrow . Jean
Thanks for saying that! I have wondered, too, whether I imagined his virtues, and it's oddly cheering to know I am not alone in that thought. I really do know there is a great and wonderful fellow in there who has gotten a bad break, and it is not the first he has had. I am trying to be a good turn for hIm. Love to everyone here. Easterncedar
Just a little time out would be wonderful, wouldn't it? I am wondering, just now, whether this epidemic of emotional distress that seems to be all over this site lately might not be in part caused by the loss of sunshine, seasonal affective disorder, or whatever it's called. I spent today outside doing chores in what sunlight we have and I do feel better, but that may just be the satisfaction of getting things done. I couldn't coax him out, unfortunately. Anyway, I do wish you some peace and rest, Jill. Hang on! Love, Easterncedar
You know, I think that the actual sunshine is not want makes the seasonal depression thing. Because even here with more sunshine (although I don't get in it much) I get the November blues...maybe it holidays.
I saw this post this morning, I like to check in, with intentions of answering but, events take over my chance to reply. We had a nice weekend and it felt sort of normal, Today, well as the song goes....what a difference a day makes... It seems today, everything is my fault, I do understand how hubby feels but its so hard taking the brunt of things, we are in the middle of a house move and I know he feels helpless watching me do everything, today several journeys to the recycling, phone calls to here there and everywhere, and more packing , yes, I was feeling very sorry for myself, but on the way home from the recycling I passed the most heartbreaking scene, a child was involved in an accident outside the school, This to me just made me realise that there cannot be any worse than that to happen. When I got home I couldn't stop the tears, We have had a full and happy life, its been cut short and I know difficult times ahead but it helps me to deal with it thinking that there is so much worse suffering in this world. I will still be feeling sorry for myself I know xx
I think it is just fine to feel sorry for yourself. I think it is a real feeling. Basically it's another way of saying that you feel bad and envy couples who are still healthy. It doesn't mean you then sit at home everyday weeping and wailing "why me? what have I done to deserve this punishment?".
Today I feel sorry for myself...loud and clear to anyone who cares to listen and yes I know some people have horrific suffering and loss to contend with and I hope they also feel sorry for themselves. I am opposed to "happy face" and there must be a justification that allows us to also feel sad and wish things were different, especially on those really bad hateful days when you are trying hard to remember that you once loved this person who has changed in all the wrong ways. Today I feel sorry for all of us, myself included as well as the people we care for.
I had one of those days feeling sorry for my lot and very tearful.I then looked at my wonderful husband locked into this cruel PSP and felt very guilty.I cannot imagine how it feels to have been a vibrant intelligent person now bewilderd and confused unable to communicate .am I being selfish to thank God he is still with me? Xx
I had one of those days feeling sorry for my lot and very tearful.I then looked at my wonderful husband locked into this cruel PSP and felt very guilty.I cannot imagine how it feels to have been a vibrant intelligent person now bewilderd and confused unable to communicate .am I being selfish to thank God he is still with me? Xx
My husband has split me into two people. There is in his mind this horrible woman and this wonderful super woman. It is just like little little children do.
The difficulty I find with the dementia /loss of memory is that almost every day my poor wife has to face the same problems and future all over again from new . It is so difficult for her to get a handle on it as every day is almost like the first day. She seems perpetually puzzled about her predicament and I can't solve it for her .Georgepa
I tell my Bob to just let it go...And try to deflect him by giving him Ice cream..the only thing that makes him happy. And also "life is absurd..nothing matters hun.....
i have PSP and can relate to your negative feelings about the person u once knew 0i am accused of being lazy by my partner who i have only known six years and not a lot b4 the PSP was dxd
so he rants at me but dos not want to hear of my falling over as it upset s him a nd unless there are any cuts and bruises he cannot relate 2 it at all-in ignorance is bliss ?
so i wonder if we will make it to the end of the road 4 me -i have already looked at a nursing home nearby 4 myself when the time comes and it shall be thus i guess.
i never thought i would die at ho,me anyway and do not expect that 2 happen btu it would be better if he could let me be myself a bit more and laugh at things rather than my crying so much
i do nto htink i have dementia as uyet e )(aged 68 )and do not hope to hav sit in any real sense = apart fm finding difficulty with Left and Right - an early sign i gather=-in the mornings as i fall when turning to the right but not the left
There is a lot of grey matter o t go b4 that sets in
so i have ramble da lot an d must now sort out the shopping order which comes tomorrow del by someone different each time
You are good to explain this to me this morning. I know he is not happy with me alot of the time and I need to remember that too. That we are a couple and it is hard hard times for both of us. Suggestion: If you can remember to do it, picture the movement before your make it. That was something I learn about Parkinson's with my Dad and it seems to apply to my husband as well. it seems that old learn movement no longer works automatically but it you picture the movement (different part of the brain) and then move it is supposed to work. The problem is to slow way down to catch yourself before you move. Good Luck and one more thing. With you partner maybe you could continue the relationship once you move to a nursing home, especially if you talk it out. Some people cannot handle this but can be kind and remember their old role if they don't need to be the caregiver. At least that's what the nursing home people tell people.
I feel that slowly down is the best thing I can do for myself. I wonder why I am moving so fast. There is no deadline, no reason to be so efficient in such a hurry. But it is hard. I think from the early days it was always hurry up and finish your work or your homework or let's get going..My husband's family were the extreme example of a factory perfect faster than the speed of light efficiency team of perfection. And he's still trying to be productively busy busy busy all the time. Nice if we could all take time to smell the roses. Old spiritual song: "Slow me down Lord, I'm a going to fast. I can't count my blessings if I hurry on past." My song for today.
My guy said to me when we were travelling overseas last year: "You're going to have to slow down quite a bit to keep up with me." I though that was very wise! He thought he was being literal.
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So What's in you Toilet, Or is this the way it looked Yesterday?
What do you all think is happening
What have you found is the hardest thing to deal with when caring for someone with/ living with PSP?
How many years did you have symptoms for before you where diagnosed with psp please
You Can Never Love Enough
