I keep wondering what is normal. I've been in this weeping thing- that out of the blue I'll be walking along in a store shopping and suddenly get hit with a wave of grief. Pain will fill my horizons and tears come to my eyes and weeping has to be held back and it is as if the earth just opened up in the middle of the grocery store or somebody just changed the channel with everyone around walking about not noticing the end of the world; and I wonder "am I normal?" The grief returns unexpectedly..but Bob is alive..but he is gone.but I am not a widow..but not really and not always..sometimes Bob's humor comes back and his face relaxes and he looks like his old self, and that hurts because I remember. And then he is gone again..replaced by someone who is hard to like. And I wonder is this normal, am I OK? Am I still here? Am I totally alone now? Who will keep me calm, who will tell me I'm okay?, who will give me assurance and talk with me and make me laugh at myself..who will share the jokes about the infuriating doctors and the system, who can joke with me about the insurance bureaucracy,? Who will assure me that what I am feeling is normal? Bob always was the one with a firm grip on reality and a wonderful ability to not worry about things you have no control over. So many things I miss. Like, am I normal? and why is that so important?
Jill
Costa Rica
Written by
zjillian
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Dear Jill how I wish that I could help. There is no normal. There is this disease that has come in and robbed you and Bob, held you both hostage, changed everything around without permission. Don't let it win! hold on to Your Love. Don't let anyone or anything else tell you you can't!
Oh Jill, you are normal.If you didn't feel waves of grief you would be strange.I was brushing my teeth the other morning and my Mum looked out of the mirror and told me to stop grizzling wash your face and get and do something useful. That really is mad!Px
You are NORMAL and very brave. Thinking of you with love Flicka xxxx
Dear Jill, I cried when I read your words. I am still crying as I type this. It's normal, just an expression of grief triggered by your own which is also normal. I believe you are grieving for your loss of the Bob your lover and friend just as I grieved for my stricken Roisin while she too was alive. I would be reading to her, David Copperfield springs to mind, and something in her frozen expression as she listened would set me off; once, while she could still write, Roisin scrawled "don't waste your time on me"; and I bawled. Is that normal? Of course it is. The sudden and occasional realization that your life and Bob's are shattered by this ghastly disease will continue to try to undermine your courage and resolution but you will overcome it, every time, and in time the pieces will form a new mosaic, even while Bob is still with you. I once suggested on this site it might help to enlarge some old photographs to remind you of what you both looked like in healthier, happier times - when you could communicate and share a joke.
You will still be hit by your sense of loss but the memories these photos evoke should make you smile. Mine still do, even if they reduce me to a tearful wreck!
Hi Jill, Everything you said could have been written by me. Yes I do a lot of weeping especially when I see everyone around me getting on with their normal life. I feel so sad I have not got a husband or I am not a widow. At times it gets unbearable and very hard to deal with. Then I look at my husband and fill up with guilt. At this stage he is totally in his own world nothing excites or saddens him. Liam was always the one who took care of everything. Now I look at a stranger, and sometimes find it very hard, until I remember the person he use to be. Jill at this moment I am crying for you and all the other carers who feel like this. I hate what this disease has done to us all. Please take care of yourself.
You are normal dear Jill. I used to think of my tears as a little of the horror seeping out. But I found that it made a little space for some of the "benefits" if I let it. The closeness I shared with my mum, the occasional kindness of strangers, the discovery that whilst sometimes I was pushed to my limit, I was equal to the task. Your burden is heavy, but it is not for ever. But the knowledge that you did the best you could, will warm you forever more.
so true former carer. My mum suffered for three years after her strike and was in a nursing home. it certainly helped me after she passed away knowing I had done all I could and more . it also made it easier for me to let go even though I think of her everyday and wish I could speak to her especially now I am in much the same position with John
barnacle . I am in the middle of reading the Lynda Bellingham biography which my daughter bought me for Christams . I asked John if he would like me to read it o him . I do a few pages at a time it's all h can cope with and me losing my voice . I find it tiring . at least it is something we are doing together but I have to keep asking him if he is still listening .
I used to read to my husband before he stopped understanding language. It was very close, keep it up even if he is not listening. I'm not sure that part matters. There are so few things to share.
Jill...you are ok indeed ,at times when I hook up Madeline,s feeding tube, without any advance feelings I go through the very same rush of terribly sad feelings ,often songs also trigger a flood of memories,other times for no apparent reason other than the constant sadness of seeing Madeline like this one has to release some pain ,l
tears seem to always be close to the surface.Jill nothing is NORMAL when looking at this illness,hang-in,just think of how things would be if you were not there,Rollie
Absolutely normal. I feel close to tears all the time. It is just constant grieving, whilst managing the situation. Always facing the suffering of my husband and scared of what next. What will happen if I go under. Will I survive and do I want to. A big hug. Jean
Thank you....I understand and it really does help to know others are experiencing what I experience. I too worry about what would happen if I couldn't do this anymore. There are no options just keeping on. Big hug received.
I hope this can make sense to everyone I was looking after a gentleman in a nursing home (late stage parkinsons) his wife said to me. "I feel like a widow without a funeral takeing place.. yet I am a wife without a husband. .. a mistress without a lover. .a friend without friends"
At the time I was in my twenties so I couldn't work out what she ment and untill now I didn't understand those words but they seem very apt now.
we are all grieving before the final chapter because we are aware of what is on the last page. Janexx
Dear Jill, I am still being hit by waves of tears. Every so often the dam overflows and I can't stop them. You are normal. Sometimes it's hard to believe but you are. My husband has just been diagnosed with PSP so we are still reeling from the shock but have decided to take 1 day at a time. That is very hard to do but at this point Les is not seriously affected. He can no longer work or drive but that is not so important. Financially it is as we are totally broke courtesy of the DWP having a 26 week waiting list. I think the tears are going to come much more for me, I am not ashamed of crying in public - It shows that we are normal.
Thank you for the response. When Bob was first really clearly ill I cried at night. He didn't get upset, he never really understood his future or compared himself to his parents who both had neurological diseases (Alzheimer's and PSP). It from the start was the knowledge of how bad things were that first separated us. we used to share everything and now I had to carry this grief alone and that in itself felt like a betrayal.
Dear Jill, I had got to a point, before Les' diagnosis, of thinking "did I really want to stay with him when he was so horrible, after 39 years of marriage I virtually hated him". It was so hard when I realised he was ill. This is a man who never moaned about anything to do with his health and never got man flu. I just feel an incredible sense of guilt. I have told him how I felt and he understands (I think). Anyway the guilt has now eased and the tears flow regularly. I try not to in front of our family (our son 37 and daughter 30). We also have 3 beautiful grandchildren that Les was rejecting and acting as though he didn't care for them. The youngest is 2 and a half and the others are 11 and 9. This is a vile illness. I don't know how it is affecting his brain and the grandchildren certainly don't. The youngest, Lakota, puts her hand behind his knee when he is going to walk anywhere and says "be careful pa". He has realised that at times he is absolutely horrid and realised (I think) what it is doing to me. I don't hate him anymore now that I sort of understand that it is more of a chemical imbalance in his brain.
We don't know what is to come as have never experienced anything like this. I know what you means by carrying the grief alone, I guess I have done that for a while, until recently. I was trying to be strong for the family and the dam burst and I decided I am no longer going to hide my tears from anyone. This is a horrible thing to deal with, but in some way tears are cleansing. I was told by a support working that tears shed through stress are different to those say if you were watching a sad film. She told me how but it doesn't matter. It's a form of release and we need it.
I can sooooooooooo relate to your husband's attitude with the grandchildren. Our helper, Juan, lives with us and his children, 6, 11, 15 stay with us on the weekends. They are wonderful children, very well behaved and very loving towards Bob. But Bob, really hates them and ignores them completely. The little one brings Bob candy and is always watching out for him. For my Bob it is jealousy more than anything. He cannot share my attention with anyone. My father lived with us for 3 years after my mother died. He had last stage Parkinson's Disease and Bob treated him terribly. I know now it was his illness but it made everything harder and made it harder for me to be loving and patient. It made me not want to take care of Bob. I felt he didn't deserve good treatment..but of course I take care of him and love him. His dislike of the children is hard to watch and I know it confuses them.
It is so hard when Les is horrid to our grandchildren. The older 2 are confused but understand. The baby doesn't she just knows that grandpa irritates her and she doesn't know how to respond when he thinks he is playing with her by grabbing her arm as she goes past. I definitely think you are right with the jealousy. Les has always been like this even with our own children. My son and his wife are expecting twins in June this year and I can't look forward to it so much. I can on good days but on others I just think more little ones for Les to irritate the life of. Whoever is responsible for giving us this cross to bear needs serious help. This is so completely alien to me. Still we laughed the other night when Les almost put his face in the cat food on the kitchen floor as he helped me to mop up the water he had spilled. I have been so cross with him. Before his diagnosis I lost my temper when he sat in the cat litter tray - I just couldn't believe anyone could be so stupid. On another occasion I heard a crash in the dining room and went in to see Les sitting in a box. I lost my temper again. I went back to watch Coronation Street and when he didn't come through I went back to him still sitting in the box. I asked what he was doing and he said he couldn't get out. I pulled him out in exasperation. Little did I know these were all indications of PSP. We do laugh at the silly things he has done. Our cats no longer have a litter tray downstairs as Les broke it. It was a luxury for them as we have to go upstairs, now they do too.
I hope it's normal. I cried on the way into work today. I cry standing in the line at the grocery store watching people going about their life. I cry when I think of my children and what this is doing to them. I cry when I think of the things B and I used to do together, when I look at old pictures, when I'm just sitting by myself, when B tells me he can't remember what I look like after I leave for work, when I think of my life without him... So I hope this is all perfectly normal, because one of us needs to keep our lives going.
I so understand the loneliness, the feeling of emptiness, and helplessness. I want to scream DO SOMEHTING! at our doctor, knowing nothing can be done to fix this. Addressing the symptoms is just a band-aid. I make myself each day to find something happy. Some days it's a real stretch, other days it comes easier. This seems to help me. I hope you can find something each day that will bring a smile, even if just a tiny one, to that day. We're all in this together.
Hi Jill, don't think I can add to anything the others have said! Of course you are normal, what is NOT normal about crying because of the condition of your loved one. What is NOT normal about being frightened about what is happening. What is NOT normal about being angry, fed-up, frustrated, because of what PSP as done to us and our loved ones.
We all miss our guys and resent what is happening to them, but some things would have happened anyway. We all change as we get older, some "age" better than others, so who knows what our husbands/wives/ mothers & fathers would be like without PSP, would we not be missing another bit that old age as taken, but PSP as left? Who knows!!!
Jill, you sound as if you need a break, try and get some well earned rest if you can, even if it's just half hour, somewhere where you can have a really good cry, without having to worry! Promise, you will feel tons better afterwards!!!
Thank you for your words. I've been thinking that my husband's life is going a different way then mine now. That before I met him he had his own different and separate life and so did I and now he was going a different way without me. We are aging differently. His family suffers from neurological diseases. My family lives forever and then just decide to die because they are no longer having any fun. Mom, 94, Dad 99...They had each other a long long time. The me without Bob is an unreal picture as yet without a plot. The me with sick Bob is not the nicest chapter in our long marriage...
Jill, your post really moved me, as it so accurately reflects what so many of us carers feel and go through. You are absolutely normal. The awful thing about PSP is that you grieve for your spouse/loved one throughout the disease and while he is still with you. I grieve for so many things since my husband fell ill with PSP - my life, our lives together, his life, everything that we thought we would have (and should have had!) but which sadly are no longer to be. Sadly there's little to be said that will give you any comfort, just know that your husband is still in there somewhere, that he loves you and appreciates everything you do for him. Hugsxx
I just reread your post and it really got in. When you said that my husband "is still in there somewhere, that he loves you and appreciates everything you do for him" really struck me and I gave a big sigh and relaxed. Thank you,
I keep wanting to know all of you. I keep wanting to get us all in one room together and then the force of that many would make us so strong we could share the funny times and know we are all sane and will survive this and that we will continue to have lives. How wonderful that would be,
Jill I fill up all the time - I fill up when my wife doesn't remember me - I fill up when I find three and a half pairs of socks in the washing machine - I fill up when I struggle to get my wife up off the floor for the umpteenth time - I fill up when I look at the mountain of ironing waiting to be done - I fill up when someone says "George you look tired " - I fill up when someone says "Veronica's looking better !" - I fill up when I've put the cat in the fridge and the sausages in the cat tray - I fill up when I have put my wife to bed and it's quiet and there is still a long time alone before bed - I fill up when I think what on earth am I going to cook for supper tonight tomorrow night the day after tomorrow next week next month oh God its endless - I fill up when my daughter goes home after visiting and I think I am back on my own - I fill up when I think how our son rarely bothers to phone to see how we are doing but I also laugh . I laugh when my wife farts loudly every time I get her out of her chair - I laugh when I demolish with the wheelchair the tower of toilet rolls left in my path in the local supermarket -I laugh when I realise I have put my wife's trousers on back to front ( she doesn't! ) - I laugh when I talk to my grandchildren on the phone - I laugh when I pour orange juice into my coffee instead of milk - I laugh when I put deep heat cream on my toothbrush instead of toothpaste ( actually I didn't come to think of if it -I yelled a lot ) . But amidst it all there still can be laughter perhaps it's just a bit harder to find - just keep looking . Love Georgepa
Oh my goodness, what wonderful folk you all are, please forgive me for not being active here, I do come and read and always promise myself I will respond , but it has been so hard with the house move, we are living surrounded with boxes and bags and yes, I cry very often, I can so relate to all of you, it is just so hard, we have now family near but, once they have gone then it hits how really alone we are in this, love to you all xxx
Don't worry about writing back..just keep reading. Use whatever time you have to take a long bubble bath, or read a book, or eat ice cream in front of TV.....
Hi Nanonthenet, I'll second what Jill has written! Just knowing you are there, getting the comfort this site brings to us all, is enough. Post when you can, so we know you are OK!!!
Dear Jill, are any of us normal. I think we are. We are dealing with something most people never will. Now I have become involved with this forum I am finding a little comfort just knowing I am not alone and nor are you. It is more difficult to believe when the tears come. But when they decide to stop we now have a place to talk to people. My heart goes out to you I know the despair you are feeling. Take care baileyboo
The comments today are just how I have been feeling this last week. Just yesterday I went to the doctor and we talked about how John was feeling and I started crying. I explained to him him, the hardest part about this is not caring for John , as he is really is very patient , but is the loss of companionship and someone to talk with and the loss of someone who thought about me instead of me always having to be the strong one.It is like but being alone but having to care for someones every need.I try to remind myself how good our marriage has been and that he still loves me although he doesn't seem to be interested in the things around him. We have a 9 year old grandaughter and she always comes and gives grandad a kiss and he enjoys that.So yes, it is very hard but what doesn't kill you makes you stronger. I think I will be able to handle most things after this. I just try to remember that I love him and he loves me. It is so helpful to know others are coping with this rotten disease too. Kathleen
Thank you for your words. At least your doctor lets you cry...mine just looked at me sternly and said "Do you think Jesus had fun on the cross?"...Now what could I say to that?????
I know...but it is sooooooooooo extreme it should be published somewhere. I should have known we were in trouble by the giant crucifix on his wall. I think neurologists are a strange group. Not very cuddly.
Jill I do hope you can truly gain comfort from the wonderfully overwhelming response you have had from your post. Every single person here on the site understands exactly how you feel and cares deeply about you. I am thinking of you and wish you strength, love Nicky x
Hugs from ireland. You are not alone we are not alone, despite the loneliness that surrounds us. We have this group. My car is where I cry. Soft silent tears for my mum who ids disappearing in from of me. Then I get out of the car put on my happy face and face the world x
Hugs right back at you from Costa Rica...I've been crying walking on the street. I have a huge pair of sunglasses that are almost black like a mask and no one can see me. What a horrible way to lose someone dear.
Jill
I so relate to what your saying, Im not even sure what to say to make things better.
Takr care
((((((Hugs)))))
Deidre
I so relate to what your saying, Im not even sure what to say to make things better.
Just your response makes it better. Knowing that others are experiencing the same things really does help. Today it is all foggy and cold in Costa Rica...but no snow. So there is always something positive. Last night I had a spider the size of a small pony in the kitchen...the good news it was not poisonous. I wonder what they eat and if it expects breakfast??? That was one of Bob's jobs..kill the spiders.
Fortunately, that has always been my job. Both grandmother and mother had huge phobias about spiders, so the only way to get any sleep was catch the little so and so's. When in South Africa, we do get the Rain spiders come in, they are huge, have to use the pool net to catch them, as S has developed a thing about all creepy crawlies!
Reading all the replies to your post, hope you realise how NORMAL you are!!!!!!!!!!
Do you know there is actually a psychiatric diagnosis called "pathological normalcy". I guess they think you can be too normal and your insurance company will have to pay so that you can develop an abnormal behavior.
Sounds like some depression setting in..You are under a lot of stress,and you are carrying a great load..You are missing your best friend forever,and that has to be very sad..I am diagnosed Bi-polar,and this causes what is known as severe mood swings..!! At times I feel like I am wonder woman,but when I'm down,I feel like a bounced check..Depression is very disturbing at this point...Even on 4 different kinds of Blood pressure medicine,they couldn't control it.Between the mood swings,and the back pain,it was at times 275/210 220!!..Dr finally asked me what I thought might work..My Daddy had some issues when he was alive,but they didn't know about this disorder then,and they just called it depression..With it,he also had ,chest pain ,that felt like a heart attack, but it was called ,angina!..He had a triple by pass in 1981,so knowing it wasn't his heart,they said it was depression..Same thing,3 or 4 Blood pressure medications,and nothing worked..They finally started him on a small 0.5 mg zanex..morning,and late afternoon daily,plus,a sleeping pill at night,for sleep apnea! I have it also..Well that worked,,He went down to one Blood pressure pill per day,and his zanex,and he was good to go..! So,I told my Dr this story,he tried it on me,and it worked..I take the 0.5 mg morning,and if I think I need the late afternoon pill ,I take it..If not,I just take that one pill,and BP stays right at 125/70 I don't like pills,but this was a have to case,or maybe a stroke out!!.This works very well.If I am feeling ok,I don't take it.Some day's ,I don't take any,some day's ,it only takes one for the day,some day's I need both ..I can tell if I need to take it,because I start breathing shallow,feeling very down,sweating,then panic set's in,then a full panic attack..I got that all together now,and have been doing very well..Long story short,if you"re feeling ok,Bob is at himself,and the day is going well,don't take it..If the day is not so good,take it as soon as you know..Also,some of Bob's medicine,would be the best,just a little,is all u need.But that,would be up to you..I know it is like magic ,for me...Well ,let me know,what you think,but don't suffer..You are no good to either you're self ,or Bob,if you are in the dumps...Take care kiddo,I'm here if you need me...God Bless you and God Bless Bob.....Carol
Thanks Carol, I will try your suggestions. Also walking is really good for me but I need someone to stay with my Bob. Today is Saturday and maybe we'll go for a drive or something different. Bob is good in the car. Like a baby.
I'm just sitting for a moment by the computer imagining everyone of you and it feels great to know you are all there and we are all together in this. Love to you all,
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CBD - Is this the end?
life seems so empty
Mourning for someone who is still alive...
Another step down
