Michael died 5 weeks ago. I still can't talk about him without tears. If someone asks how I am, the tears start. Looking at his picture causes tears or just plain thinking.
The hectic times are over. Unlike some others, my phone rings too much or too many text messages. I just want time to catch up, mainly on paperwork which was neglected for 2 years except for essential things. Between the legal matters, insurance issues, financial stuff, I have little to no free time.
I did get a call from hospice reminding me that they have a bereavement group monthly but I can't imagine getting through a mtg without crying the whole time. I want to kick and scream like a spoiled child. I don't want to be a widow!! I want my best friend back, the only person in my life who truly loved me unconditionally. I've heard it before but "who am I now?" I feel so alone yet I don't want to see people. I don't want light conversation. I'm just turning into a miserable person. I haven't been able to connect with you all for awhile as it wouldn't let me connect on the occasions that I had time to try. So far behind on reading posts and I'm sure I've missed much.
I start to 2md guess myself that I didn't do enough for Michael. Maybe if I kept him on the Paleo diet he would have done better. Maybe a different nursing home. Maybe if I kept him home and brought 2 aides in. Maybe if I fought harder. Maybe, maybe, maybe.
Just going to stop, nothing good to say. Is all this that abnormal? So sad. Thanks for listening.
Liz
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Mikey12345
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Hello Liz, just a note to say this is all normal!!! Keep talking to your friends and crying. It is a release of all the emotion you feel. Try and go to the hospice meeting as I think you will find others like you there and at various stages of recovery, and that might help. It will help you get out of the house and make new contacts.
I too remember the pile of paperwork that had been neglected for a long time, and I had no great desire to get on with it!
It is perfectly normal too to wonder if you could have done better for your love! You did your best! And you stayed to the end by his side. Find some peace in the thought that you did everything that you could! Hindsight always makes us think and regret. WE SHOULD NOT AND YOU DID ALL YOU COULD!
Hang in there! It does improve but we are all different in how long it takes.
Thank you Jen. I am not isolated. I am in a 12 step program and have been active in that for 43 years so definitely not without people. I just don't want to go out which is tough to fight. I also started with a therapist about 2 months ago. I will do as you suggest and go to the mtg when it's available. Although I have some friends who lost a loved one, it might be helpful to talk with people who have lost someone more recently.
Part of me feels I have no business responding because I'm not widowed (yet) and aren't going through what you are, but it's so compelling to respond to someone one "knows" and corresponded with through this site (!)
I've read a lot of the responses from our survivors and I've seen them say "beware of the feeling that if you'd only done X, he'd still be with you.." so I'm guessing what you're experiencing is pretty typical. There've also been another couple of members who've shared recently that they just aren't ready to go "out".
I hope you'll love yourself as much as you love Michael, and give yourself a break: you have enough to cope with - please don't doubt yourself and what you gave him all those years.
Hugs to you - I'm glad you're still checking in XXX
Oh Liz feel like Anne I still have George here with me, but you looked after Michael with unconditional love, you have lost that love/best friend, go to the meetings meet people in the same place as yourself, hopefully it will help? Sending you a big hug. Yvonne xxxxx
Hi Liz, When do things start to improve? simple answer, Not Yet!
Everything you are discribing is perfectly normal. Although it sounds as if you could do with a rest. Caring was a very consuming past time, grief is even more so. Give yourself some space to deal with this tiredness and process your feelings. Let those tear flow, you are lucky, I couldn't cry much, enjoy them, wallow in your grief. Lie on your sofa, get some peace in your life. The world will soon grab you again, but it is very much baby steps.
As for the guilt???? FORGET IT!!! You did everything possible for Michael, without you, he would have gone a long time ago. Looking back on our journey, of course I made mistakes, that I wish I could change, but equally, I am enormously proud of how I cared for Steve. It was PSP's fault he was in the state he was, not mine. I did my very best to help him through his journey. There was nothing else I could have done. It is exactly the same for you!
You are right, Widowhood sucks big time. For me, it's a price worth paying, to know that Steve is no longer suffering from this evil disease. It's got me through many a lonely dark night. I hope it will for you as well.
We are all still here for you, so rant and rave away. The group has this huge shoulder for you to cry on and we are holding you very tight.
Thanks Anne. Thanks for your kind words. I really wish I could let go of the guilt but I keep finding the spots where I fell short and then I dwell on them, but you're right, I did the best I could at the time. Caregiving was all consuming and exhausting, but I would love to see him for just a minute more, but certainly not at the expense of his continued suffering. I do feel good that he beat the CBD! It did not win.
It might be a good idea to lie on the sofa as you said. I am not allowing myself to chill out. So difficult but I will try.
Hindsight is a wonderful thing Liz. I still go back, way before I thought PSP came into our lives, I can see its miserable threads winding themselves around Steve. That brings a bit of guilt, as I didn't understand what was happening. All the talk of divorce and so forth! But that has long gone and so must the guilt. I didn't know then, so why on earth should I feel guilty.
Like you, I did try my best, that's all any of us can do. We can't even really control the future, but we can have a say in it. That's where all your energy has to be now. Looking after yourself, finding a way to live your new life. Rest though, has to be the place to start.
All i can offer is a virtual hug. I don't have the cure for grief, but do know you are lucky to have had a husband you loved so deeply and completely. I hope that one day you will be able to see his picture and smile without tears.
Having been through profound grief once before in my life I can tell you it takes time. I had read it took seven years to truly finish mourning. After seven year I can say the pain wasn’t as raw but the sense of loss was still there.
A bereavement group would be a good idea when you feel ready for it. Meanwhile cry as much as you want. Get it out.
As for could you do more? No. This disease has an inevitability to it no matter how much we would like it to be otherwise.
That is so true! He wasn't going to avoid CBD. It was going to take him in the end, when was the question. I could not stop the process and need to remember that.
Seven years!? I'm sure, as you say, it's still there even then. Guess it's the new normal.
My neighbor across the street lost his wife to melanoma 2 years ago. I saw him a few weeks after. He was devastated. Told him the first year is the hardest. Every holiday or meaningful date will be the first without her.
Another neighbor who is also friendly with him couldn’t understand why he was still so upset a month after his wife’s death. Had to explain to him when a much loved person dies the grief isn’t over in a few weeks.
Now it’s two years later. He just spread her ashes on the beach in her favorite resort town in New Jersey. He doesn’t tear up as readily as he did but the pain of loss is still very much there. It has modified some. He did join a bereavement group when he was up to it.
He did related to me someone has recently asked him wasn’t it time to get over it? You may find people asking you that question as well at some point. Grief makes people uncomfortable. Ignore them.
Liz those of us who have lost loved ones know what you are talking about! The what if's could drive you mad!! The truth is you couldn't have done anymore. The dreaded illness was always going to take him from you. I hate it with a passion. All the broken hearts there are because of it, how could anyone not hate it?
You are lucky to be able to cry. I struggled for ages to cry and even now I feel I am not finished grieving. My husband died February 2017.
Someone said it takes 7 years to grieve. I can honestly believe that. Especially after what our loved ones have been through? It is so traumatic for us too, and I think that is part of what causes so much grief. Go to the group at the Hospice as it will help to talk to others who have recently lost loved ones.
You will get there, we all will but you are in the early stages of grief. Be kind to yourself. Spoil yourself if you can. Maybe not yet...but soon.
I know what you mean about being a widow!!! I hate that word with a passion and have never used it so far. Why should I? Maybe I will have to one day but until then I won't use it! So there!! Stomping my feet now! 😁
Liz we are all here for you and many of us are going through the same thing!! Varying degrees I am sure but we feel that way too. Lots of friends on here who understand too?
Marie, I will go to the next bereavement mtg as hard as it will be. I'll give it a chance.
I too haven't used the "W" word except on here on my rant. I did have a choice on a form....am I a Mrs, Miss or Ms. ? Don't know what I am. I think I put Mrs. I still feel like a Mrs.
Misery loves company. I'm sorry for your loss but glad there are people who truly understand.
I still use Mrs and wear my wedding ring and that of my husband. It keeps me close to him. I actually like to be close to him. I don't want to go looking for someone else so why take my rings off?
I have been sharing The World Cup with him!! I am not into football so have no idea what is happening at times. I used to ask him. So I still do although there is no answer. I think he is probably there laughing at me!
Maybe I am slightly mad but that's how I feel. Guilty too just like Heady for the rows we had when I didn't know there was anything wrong with him. As Heady said we didn't know? So that is a hard one to get over but I feel I am getting there with that. So will you. Hold on tight because it's a bumpy ride. We will catch you when you fall.
You guys are so helpful. Thank you so much for being here.
I have a question for you. How do you wear his ring? I've been trying to find a way. It's huge and I would rather not alter it yet making it into a necklace or pin would be something I probably wouldn't wear everyday. Just curious what others have done.
Liz I wear mine on my little finger and his on my wedding ring finger. I also wear my Mother's wedding ring as it's quite a slim one to keep G's in place. If I didn't do that his would fall off! I haven't been able to wear mine for years as my fingers got bigger as I got older! I was only 18 and very slim when we married!! So I decided to try mine on my little finger when he died. Wish I had done it sooner. It used to make him cross that I didn't wear it but it really started to hurt so apart from getting it enlarged I didn't have much choice?
My Mother's wedding ring was bigger so more comfortable, although a slimmer type so I used that for many years. When he had to remove his ring a few days before he died I put it on my finger and then kept it in place with my Mother's ring as I said. I did think about putting it on a chain but knew he would prefer me to wear it on my finger. It just felt right too.
My daughter had it for a couple of days in her handbag and when I realised she wasn't going to give it to me I asked her for it! It would have really upset me if she had been wearing it. I think she has been cross with me since! I thought I would give it to her when I died but now I think it would be nice to leave it to my son. Maybe I should let them fight it out themselves? Families eh?
Yes, families can be very challenging. Michael had huge hands so his ring falls off even my thumb! I tried putting a ring on after it to keep it on but that didn't work either. Would really prefer to wear it as a ring but also don't want to alter it. Can't have the best of both worlds. Guess I'll have to speak with a jeweler eventually. Thanks for sharing your experience.
Still very early days for us Liz, I am a bit envious that you can shed tears as mine rarely flow and I would love them to for the emotional relief that tears bring. I am reluctant to leave the house and bump into people who don't know how to respond to my new situation. Many friends pop round, which I love, but equally I want to be alone with my thoughts, grief is an extension of love and takes a lot of processing. I am biding my time and don't want to be hurried into doing things I'm not ready for. I also had a letter from the hospice inviting me to attend a bereavement group, they gave three dates so I may book the last date and cancel if I don't feel I want to attend.
After so long nursing and caring for the man you loved, or constant visits to nursing home is bound to leave a massive hold in your life, I'm still not used to the string of carers, medical bods etc that ruled every day as Ben died at home, and now, Nothing. It's no wonder we don't know what to do with ourselves and can't settle.
Oh my word! You said it perfectly well. That's exactly how I feel. Sometimes I can't stop crying and sometimes I think I must be made of stone. I,too, love to have family around and on other hand, wish they would go away. Nothing makes any sense. Today was a holiday and there were 20 family members here for a picnic. Michael and I used to have picnics on July 4th for 100 friends. All those memories came back today without him here.
Some people believe their loved one comes back in another form to visit them. Our grandkids think that Pop Pop drops pennies for them to find, and they do. A friend believes her late husband visits in the form of a beautiful cardinal that was never there before. Me? Well, just so happens that a pair of Turkey buzzards were born in our barn. As they grew, they learned to fly and would acknowledge Michael as they came out of the barn. He would talk to them and they really seemed to recognize him. Well, I believe instead of pennies from Pop Pop, I get a vulture!! Instead of the two of them flying overhead today, there was a single one flying over the backyard as everyone was out there. Possible? Who knows. I like to believe he was watching over us. That was sad.
"Grief is an extension of love". I guess that's true which makes it ok. We had such a special relationship, it will take a long time to feel half normal again. Can't imagine.
Thank you Kate, for taking the time to write. We must be in the same place.
Cardinal or Turkey Buzzard, what does it matter if it seems to be a sign of their presence. You did make me smile with your description I think that I would more likely be landed with the Vulture rather than than the Cardinal. I feed the birds and have a regular blackbird call waiting to be fed, maybe that's Bens way of reminding me his presence is still around. I used to think he was like a baby bird when I fed him, opening his mouth waiting for the next morsels. Miss him.
See my response before. I'm having trouble crying as well and am surprised but I still ache like hell and am just starting this journey. Can't relax and walk around in circles trying to escape. So hard.
Hi Mikey, your sadness and desolation truly touched me and I have yet to face this horror with my wife of 46 years but it will not be long now. The best advice I had when I couldn't control my emotions after her diagnosis was to speak with my GP. I ignored this and continued to break down in tears in some pretty strange and public places! Eventually I had to go but being a bloke I downplayed my symptoms. She saw right through this and presribed a mild non addictive anti depressant. Within 3 days I could talk about Mary's condition without tears. Talking is important and will help us in the long term. I feel for you. Rob
Hi Rob, I too took a low dose of antidepressants when Ben was diagnosed and it helped to dull the pain and make me able to cope with our new situation, it helped me keep strong. I am no longer taking them as I don't want to dull the pain, I feel I need to face it head on in order to work through my bereavement. It's funny how we all have to deal with things in our own way.
Thanks Rob. I can relate! Dr prescribed Ativan which I try to not take. Don't like to feel drugged. Other drugs would effect my heart issues. Intellectually I can talk about the disease and Michael but let my emotional well being be questioned and I lose it. Guess we all go through this.
Those sensations that you go through are called "duel" and vary from one person to another. These negative sensations are taking their true dimension offering over time a more positive, more real facet of a rich past coexistence.
What a great luck to have lived with a person "love you unconditionally". That has been a great gift to thank and enjoy in the memory that cry about it.
The duel is the great moment for family and friends as a basic "leit motiv". It will be necessary to balance the emptiness and loneliness that are installed with the freedom that comes back. It is time for almost forgotten illusions and desires to take again. Cultural groups, NGOs, travel groups, .....
The bereavement group will surely bring comfort and other people's experiences from which you can learn as we learn from other caregivers in this chat. Crying is very good and very human activity.
I haven’t been able to have a good cry over G’s death (nearly 8 months ago). I feel them building up and couple may escape but then I seem to banish them - too afraid of opening the flood gates!
I went to one bereavement group at the hospice, but it wasn’t for me. I still have counselling at the hospice which I find more beneficial.
Someone told me after G died that I should accept any invitations that I was offered to go out. I did and put myself through incredible stress and ended up being very unwell with flu and a chest infection over Christmas and New Year. I have since slowed down a bit, but am still busy and wonder how on earth I managed to care for G and her needs.
I have decided that this year is for me, I am having a complete body service. I have had my eyes lasered to stop me getting glaucoma, had a hysterectomy 4 weeks ago, and am now tacking my poxy neck and hoping that something can be done to ease the immense pain. I have also completed a course on counselling at college, and am signed up to the next one in September. I often find myself well out of my comfort zone. I seem to think constantly of G. I have felt the guilt of thinking (and knowing) I could have done more for G, especially on her last day, but then hindsight is a wonderful thing isnt it?!
I hated PSP and everything it robbed G of, but I also look at it as a very steep learning curve. I learnt a lot about PSP, but also about myself. Things I thought I would never be able to do I did. I wish that G hadn’t suffered so much. I miss her so much. I miss having someone special to share things with. Friends have been brilliant but they are not G. I so want to discuss things with her, for instance her probate, that I still haven’t started. Her pension - as her pension provider is messing me around. Things I thought we had “tied” up but find we hadn’t. But one thing I am glad about, is that since G died she wont be suffering any more. It was a minor miracle that she lasted as long as she did, although I find myself thinking that it should have taken her sooner, if only to stop her suffering earlier.
So as to when will things get easier, I have no idea. Sometimes I think the days are getting harder instead of easier. Have told myself that I have to start being kind to myself. So am trying to put a positive spin on the experience, as I said earlier I am going to be continue my studies in counselling with the hope that I can give something back, so the PSP experience can only help with that.
At the moment I take one day at a time, one hour at a time or even one minute at a time. I have written a few letters to G which has helped even know she will never read them, I think it is important to have some release.
Sorry this has turned out to be a bit of a diatribe, but I wanted to let you know that you are not alone with your feelings.
Nice to hear you are doing things for yourself! It is so difficult when we think we covered all of the bases and find something incomplete! How frustrating! I'm going to take a lesson from your experience and not say yes to everything I'm asked to.
Your experience matches mine in many ways - though this is in regard to my sister’s unexpected death a year and a half ago (Mom with CBD is still here, but that loss is on the forefront). I didn’t want to see or be with any friends - I didn’t like this new “me”. I wasn’t the same person that was the foundation of past relationships (I couldn’t bear to hear their happy news and I hated the role of them feeling like they needed to sympathize with me - even if they genuinely wanted to do so. Everything felt so unbalanced in the give and take of friendships - and ultimately I hated myself for having these feelings - on top of already hosting many uncomfortable feelings.)
I thought beinging with friends who had recently gone through a loss would be better - we each had the same deficit (sorry for lack of better word) that we were bringing to the table . That only marginally worked for me as it felt like double the grief/problems to some extent - and it must have been the same for them because we eventually stopped meeting up and I haven’t heard back from them in quite awhile. It’s like the grief shared between us was just so overwhelming. I cried several times when out to lunch with well meaning friends trying to reach out to me and engage me in somewhat normal activities - even as long as 6 months post passing. This only embarrassed me (especially when neighboring tables turned to see what the problem was - probably disconcerting for their lunch dates as well) and I eventually declined invitations. I just wanted to bring my old happy funny self to the table, I wanted to contribute to my friendships, to the greater society in this way - and I just couldn’t at the time. I felt I had lost “me” as much as my sister. As far as “when”? - I have days now with glimpse of old times, but I think at this point I’m thinking it will never be like it was - I’ve lost all the people with whom I shared a common history from my childhood to young adulthood -I didn’t expect that (I’m in my 50’s). So at this point, it feels more like my axis shifted and I’m getting used to a different world. This probably doesn’t help you much other than to say - me too.
I can relate to the feelings in losing my husband. I am miserable and want mostly to be alone, however, I am grateful that others have happiness and encourage them to appreciate what they do have. How quickly it can be lost. Thanks for writing.
Liz I cannot add much to what others have said here.They are all so spot on.I lost my beloved soulmate nearly one year ago,July 12,2017. We would have been married 53 yrs. My best advice to you is to take one day at a time- just as you had to do as a caregiver for him. We got good at that didn’t we?
Now,after 11 months,I don’t tear up as often but still think of him many times daily.My “visits” from him are a train whistle- we both always found the sound of a train comforting and now when I hear the train I think he is listening with me.
As for getting out and doing things I found it very hard at first especially going to places we had been to together.It is getting easier though.I guess I am beginning to accept the new me.
There is so much more that could be said but I will stop for now.I pray daily for those who have recently lost loved ones and will keep you in my prayers and thoughts.
I can't cry! I do sometimes but I stop midstream. I haven't "gotten there yet." I hope I do, they say it is necessary. I'm still angry and in shock. It's much worse than I thought it would be. All alone in the house for days on end and interment upcoming. Then it will be final.
I also don't let myself really cry as it feels that it would open the floodgates and I'd never stop. But I weep at the drop of a hat - wet eyes a lot of the time still !
I've always been fine on my own but it feels different now. So isolating.
I feel I'm too old and tired to do much. Not ready to pick up life.
I know what you mean about being used to being alone, Ben traveled with his job and I spent a lot of time on my own but knew that he was coming home after a few days away. Very different scenario to actually properly being alone, sad and lonely place to be Jean and I despise it. I also hate the word widow or deceased, sends shivers down me.
I'm just like all 3 of you! I, too. abort the tears when they start but from that point on, they continue to leak for a time. Very uncomfortable for all that are around including me. Went to the dentist today. Poor guy asked me how my husband was doing! Wasn't good. If I just let it happen, I don't think it would stop.
I've been living alone for 10 months now yet he died only 5 weeks ago. When he was in the nursing facilities, I believed he would be back home so thought all was temporary and therefore acceptable. It's just beginning to feel like this is the new normal, the beginning of the rest of my life.
I've been getting forms this week where I've been identified as the "W" word rather than Mrs. I do not like it! And I don't like forms coming through with"deceased" after his name. They both seem so offensive but I have to accept them as facts which doesn't mean I won't avoid them if at all possible!
I'm so sorry you are going through these experiences as well. A place no one wants to be, but so helpful to not be alone going through this. You are all just great!
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XXX
The day started 3 hours ago
Does anyone with PSP get dizziness when looking down?
Does your loved one try to get up when they can’t walk?
A new start I suppose 
This made me so happy! + DIET DOES MATTER!
