PSP Association
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Grieving before the end

Dear All

Would any of you care to share how you are or if you are, grieving before the end for your loved ones?

I think it's perfectly normal to experience different feelings, once you know your loved one has a terminal illness i.e. Angry, upset (continually), drained, continually worrying, the list goes on.......I've been toying with all of these feelings for a seriously long time now

When my Dads journey does end I'll be so relieved for him, I wonder if I'll crack up more then or am I doing my grieving now?

Currently considering another dose of counselling at the hospice, they were amazing a few months ago and I didn't think I'd need to go again......wrong!!

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Amanda, I feel as though I've been grieving for years, but trust me you don't know how grief really feels like until you've actually lost someone you love, make the most of every day you have with them! ....

Hugs....Pat xx

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Thanks Pat! Big hugs back darling x

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I agree with the others - it's normal to grieve before they're gone. It's hard to watch this cruel disease, knowing you lose more and more of the person every day. But, the option of being angry doesn't feel better (to me). My mom was 76, and I have so many friends who lost parents "young," that I fe fortunate I got her this long. And since she was older than many hit with this, I'm also glad she was able to watch her kids marry and meet all 5 of her grandchildren. It's all a matter of perspective and I feel blessed. Until now. Only time will tell how this impacts me (and my 5 & 8 yo sons!).

Finding a balance between grief and appreciation for now seems like a worthy enough goal to strive for to me. Hang in there!

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What a great way of liking at it .. my mum is 76 and yes I've been very lucky as I too have friends who have lost parents when they were younger. Xxx

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Hi Amanda, I remember when my mum was nearing the end having fought Bowel Cancer for 6 years, I was very angry with the doctors for mis diagnosing her condition (treated it as a lazy bowel) over a 2 year period, even though her dad died of it. If they had listened to her, she knew something wasn't right, we might have had more time together. However, I remember when she got so weak and frail, praying on many occasions to God to take her as I couldn't bear seeing her suffer so much. When it did happen I admit I was relieved her battle was over. That as 25 years ago and I still miss her.

I believe we do go through a process of grieving while looking after our loved ones, as we lose a little more of them as time passes. But I know you will come out strong as you have done all along this awful journey. Love and hugs Nanny857 xx

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Amanda I feel George's life has been taken away from him, also myself, we never even thought that one of us would be ill, I look at him and feel so sad. It feels like you a playing a waiting game. I feel very bitter, our retirement has gone, and we can't do anything we planned to do, so many plans, so many things we wanted to do.

I am so sad that he is terminally ill, I don't know if I am grieving? I don't want him to suffer the way he is, coughing and choking, it is the most horrible thing to see, and being so helpless not being able to do anything.

I have gone from being a quiet person, into being the most pushiest person ever, to get what George needs, I don't like myself sometimes, because I was never like that, but you just have to do it, our you get no where.

I suppose I am grieving for George, and for all our plans, for our grandchildren who look horrified when he starts coughing, the tears have all dried up, life is so unfair sometimes. Yvonne xx.

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Agree Yvonne it is so bloody unfair and I understand exactly what your saying! Thank you for sharing ❤️ X

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Yvonne,your words could have come out of my own mouth,word for word.Yet having just lost my husband almost a month ago,I am beginning to forget those hard times and am remembering more and more the good times.Hang in there!Janet

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We can regret what we have been denied at the same time as appreciating what we have had. It isn't greedy to have wanted more.

Big hug, Yvonne xxx

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Yvonne,

I feel the same way. Bitter about our retirement and plans for fun or just to enjoy each other's company.

Yes, I've become the one who calls the doctors or nurses, etc. to get Charles help he needs.

And the coughing, the coughing, the coughing.

I'm grieving yes, every evening when darkness comes I start crying.

Hand in there.

Cuttercat

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Yvonne, I feel exactly the same. Bitter and a fierce protector.

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Thanks nanny857, I suppose, welll actually everyone is different but I get exactly what your saying!! Hugs x

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I felt just like Yvonne! I put all my energy into getting the best for J while he was hospitalised as most of the medical staff did not seem to know what they were dealing with! I seemed to have a better idea of j's condition than they did. I focussed on his wellbeing and care by nursing staff, and with being there every day while he could relate to me.

We were both comfortable in each others company, as we had had a quiet and happy few months where i looked after him at home and did not make demands of him that he could no longer do, and we were no longer frustrated and angry with each other.

After the few months of fighting agsinst perceived 'silly decisions' by doctors, watching him continue downhill, waiting for the end that i alone seemed to see, it was a relief. But there is nothing to fill thst void - you have spent 100% of your time caring, fighting, grieving, and now there is nothing, just nothing!

I think that is normal, whether your loved one goes suddenly, quickly, or slowly. I also think there must always also be the self doubt, of whether you could have done something different that might have made a difference anywhere along the course of the illness.

The reaction is the same for everyone - yet different as each experience is personal and individual.

Hold his hand, hug him, kiss him while you can, let him know you will miss him, that you will be all right if he asks. We did not discuss the fear/fact that he was dying. The only indication i had that he understood that he was came from that question 'Will you be all right?'

It is hard afterwards, but you will get through. It just takes time.

Hugs as you deal with this!

Jen xxx

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Thanks Jen, my Dad is always worrying about my mum, bless his heart and she has to reassure him she'll be ok. It's a shit journey to experience x

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Jen,

I'm afraid of the nothing! When you're in it, as I am, I have purpose still.

Cuttercat

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All you say is so so true.One definitely grieves before the end arrives as the disease crushes your lives and everything around it.My hubby had to have a peg a year ago as he couldnt drink or eat anymore,but i feel the suffering is just being prolonged.My head is screwed up with mixed emotions.Keep strong.We carers are amazing remember xxx

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Aww thanks millywigg, none of this is easy is it? Hugs x

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Hello Amanda ,

Yes I'm definitely grieving for my lovely mum despite her still being able to do certain things for herself. I have cried so hard at times and now seem concentrate more on making memories and making her as comfortable as possible. I still feel so sad and angry ... never thought of having counselling as you mentioned .. maybe I should look into it . Mum realises what's happening to her and that I find incredibly hard ..so sad! I can't honestly imagine my life without my best friend !

It's just become part of my life .. the first thing I think of in morning and last at night is my mum and what's next!...

Thinking of you Amanda lots of love to you and your family .

We are all in this together .

God bless

Jude

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Aww thanks Jude, your response made me cry! Ask the hospice if they can arrange counselling for you, honestly, nothing to lose and perhaps a lot to gain! X

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Definitely go for counselling.

love, Jean xx

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I'm so truly feeling like I have already lost my husband,I m at a total loss of living life. But I do manage to keep going. Projects,painting,yard work . My Neigbours think I have lost it

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Bless you dw, at least you manage to keep going, which as we all know and appreciate is bloody hard!!!!! X

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You have earned your medals as well.

We do what we can and more,and there is no one else then you and the other will understand what has been dealt to our love ones and the toll it takes on our mind and body

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Indeed it takes a terrible toll all round!! X

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My mum died in February after a long struggle with PSP. The first signs of it where about 10 years ago. She struggled along at home and then spent the last 4 years in a care home. I am grieving for the loss of my wonderful mum now but I would say that I have been grieving for the last six years. Losing her speech was the first stage of my grief, then through every stage of decline the grief was there. It's so incredibly hard to deal with. I felt a depth of sadness I have never felt before. I can still feel the knots in my stomach as your mind and body try to control to utter grief and suffering you feel. Yes I would say I grieved long before mum died.

We were so anxious about how mum would die and I am so glad to say that she had an incredibly peaceful death, with no pain relief, with her favourite music playing and surrounded by her family. I am so thankful that after such a horrendous struggle she had an amazingly serene death.

My heart goes out to you and I send you love and strength. Go and get more counselling, do whatever you need to get by. You are on a difficult journey so be kind to yourself.

Best wishes

Kath

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Aww thanks Kath, I so appreciate your response! Huge hugs x

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Of course you are grieving now. You have lost your Dad as he was, you have the fear of what is happening now and what is to come. Not a pretty mixture. I would definitely go back to the counselling. I had a lot in the middle of Steve's journey and the Hospice were giving me counselling at the end. I know it helped. I am sure I processed the anger before he died, as for the rest...... Still struggling, although I know I am moving forward. I rarely see the PSP Steve now, just how he use to be, that hurts big style.

Every thing you are feeling is totally normal Amanda, so will be the relief at the end, but please don't worry about that now, just concentrate on today and give your Dad a big kiss and a cuddle, while you can.

Lots of love

Anne

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Aww thanks Anne, wise words as always!!!!!! X

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Dear Anne, you have answered one of my fears..........mum is still hanging on with us. She has an identical twin sister who I am very close with. We talk a lot and I've confided in her that I can't remember mum prior to psp and that my fear is I never will. But I think/hope that once she passes gradually the happy memories of the loving mum I've had will shine through and the psp mum will fade.

Much love, Michele xxx

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That's strange Michele, because I can't remember my dad before Psp either, it's just like Psp has blocked those memories for me....I wonder if I will remember one day....x

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The brain is a wonderful machine, in protecting us from things we don't need to think about. Steve's PSP noticeable symptoms started with a stroke. So he went from a fit, health, get up and go man, to someone with apathy and barely talked, over night. I never once missed the old Steve, never even thought about. Yet now, seven years later, I can only see the bouncy, non stop chatterer, the that was my husband. It may take time, like it has with me, but you will remember your Mum as she was before PSP.

Lots of love

Anne

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Hi, I agree with everything everybody has said. That and more. Billy was ill for 10 years. The last 5 of which I cared for his needs, as he slowly declined. I often looked at him, and tried to imagine life without him. I couldn't. So yes, I grieved while he still lived. But I kept strong for him, and fought for what he needed. I believe he kept strong for me too. He couldn't tell me, he too lost his speech.

He's been gone almost 8 months now, and to be honest , I'm lost. The days are long, and I long to feel his arms around me. The loving side of things was one of the things I grieved for while he was still here, and I'm not just talking about sex. At least I could cuddle him.i miss those cuddles. I wake in the morning and make a plan for the day. I have to, because otherwise, there is nothing. I have too much time on my hands. I've redone the garden, decorated almost all of the house. Only one bedroom, and the hall to do. But what am I going to do when they're done? And there's a long winter ahead.

Yes I'm able to do many things I couldn't. My time is no longer restricted. I've been home 3 times already this year, and am going again next week. The family time has become mega important. But nothing makes up for the fact that Billy is not here. He's not going to be here when I come in the door, he's not going to come in the door at the end of the day. And I miss him being here, sick or not.

Us carers do an amazing job, mainly because we love the person we care for. . Yes it's frustrating, when you have a bad day, and it's heartbreaking watching the person you love living half a life, or no life. Life itself may be physically easier when they go, but it's not easier. Billy should be here with me. And you're loved one should be with you.

So make the most of the time you have. Laugh, when it's funny. Cry when it's sad. Enjoy the time you have, while you have it. Grief is still there after. Just a different kind of grief.

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Thank you Beverley for your very personal and honest feelings x

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I am

Grieving for

My mum too for the last six months

I feel as I can't help it and I feel so sad to see her deteriorate especially her speech

I just hope

She does not suffer

We have to keep going for the sake

Of the rest of the family

Wishing you strenfth

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Bless you, big hugs x

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My mum has been diagnosed with cbd shes been sufferin and tryin to get on way everyday tasks shes indenial but i see her goin down hill its heart breakin watchin a strong women she once was struggle and unable to care for herself we were all thinkin before diagnoses this can be fixed but unfortunately theres no cure my emotions are up and down i worry about her everyday shes my best friend i relied on mum for so much i hate everything at min why is this happenin to our beautiful wee mum x

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Bless you Mickyd38 it's absolutely heartbreaking x

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Hi Amanda, I felt I had gone through the grieving process last year, G was as becoming more and more detached and she kept saying if I can just live to such and such date......

I don't "do" emotion, quite happy for others to cry, but not myself. I have been going to counselling for over two years, started as once a month, now I go every two weeks. It is the only place that I feel "safe" and on occasion the tears have flowed.

I've been told I am now going through "anticipatory grief". I know the end is close, in fact I have been told it is very unlikely that G will be here at the end of the year. G has expressed from the start that she doesn't want to know anything about this evil disease, but I do think she is realising that things are not good. A couple of weeks ago she told me she was scared of passing away, and scared about what will happen to me.

I have been battling the NHS since the beginning of the year, my main battle has been with CHC, having been referred for Fast Track. The application wasn't accepted until mid July! G couldn't understand why I was getting so cross, and I think it's not the done thing to say "you've only got a few months to live" she knows that extra care will be given once the money finally comes through, and this has upset her greatly, she doesn't want someone here all the time, but knows that I cannot cope physically (I have a deteriorating cervical spine, I should wear my neck brace all the time but it's not that comfortable when I am trying to care for G).

We are very lucky to have a fantastic GP and consultant which has been very helpful. The GP and Counsellor have warned me that I won't know what has hit me when G dies (that's cheered me up no end). People ask me what I will do when she does, how on earth am I supposed to know until the time comes.

The hardest thing I have found with PSP is that it has robbed G practically of all speech. Her eyes have always been expressive, and I see her fear in them. I don't have a faith, but what G (and others that have/had PSP) is going through is just cruel, an animal wouldn't be allowed to go through this suffering.

Although it will hurt to lose G, it hurts more to see her suffering in this way

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Thanks gadgetgeek, your response I can tell, is right from the heart and I agree with everything you've said x

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So touched by your honest description of your feelings. I'm in a very similar place. It is indeed torture all round.

Big hug from Jean xx

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Yes,definitely I grieved for Don before his death a month ago.I would watch him with tears running down my face(he could not see them because his eyes were closed most of the time toward the end although he could still walk,talk,and eat).Mostly I guess I was grieving for the life I thought we should have and wondering how we got dealt the hand we did.Just try to cherish every moment you have with your Dad and encourage your Mom to do likewise.

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Bless you, thanks Janet. ❤️ X

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PSP is a long journey slowly robbing us of our loved ones. The grief is part of this journey, the loss but by bit of the person we loved. I. see a counsellor monthly - I feel I can say things to her and not be judged. I try really hard to celebrate and hold onto the odd glimpse of my old husband and live as calmly as poss with his PSP replacement. But every now and then grief hits out of the blue. I was buying him a birthday card recently and found myself sobbing in the card shop. I felt fine when I walked in and a soggy wreck as I left minus the card!! The thought will this be his last birthday was overwhelming.

Take all the support you can get, it helps to talk.

Love Tippy

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Thanks Tippy

Agree it's a bloody long journey x

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Oh Tippy, that is so sad! I have to try to think only for the moment, to stop myself from becoming a soggy wet wreck! X

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I cry all the time when I talk about how Chris is.

I see dealing with loss as like peeling an onion. We take off one layer. There is another one. We can't do it quickly because each layer must be faced.

I can't bear being out and seeing couples being as we were. So that is hard. Then I am coping with how Chris is and making the best of what we have.

After he dies I will then have to face the reality.

No short cuts, I'm afraid.

Knowing all this doesn't make it any easier.

Chris wanted reassurance from all our friends and family that they would be there for me after he has died.

love, Jean xx

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My councillor explained to me hat it was anticipatory grief that we go through, knowing that you loved one is slowly slipping away from you and there is nothing you can do, hopeless situation for the sufferer and carer. I so hate this disease robbing you both of any kind of future.

K xx

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Thats true but we are also daily grieving the loss of bits of them as they were every day. Even things like- I now have to do everything which was shared, he brought me a morning cup of tea - he always went to the bar to order drinks. Thousands of small losses.

xxx

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Jean I was talking to someone today, I said to him, people think that because we have the help to take care of George, my life is easier, but it is not, I have to worry about everything, the bank account, the bills, the car, the house, the garden, if something goes wrong in the house, it is down to me, George would look after 75% of those things, I feel like I am worrying about everything, so bloody unfair PSP is. Yvonne x

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So true

xxx

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Jean glad it's not just me who feels like this, people don't realise how hard it is. Hugs to you Yvonne xxxx

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Hugs back !!!

xxx

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It’s been like that for my mother. She’s in her 80s and having to do every little job around the house on top of looking after my father is such hard work. Family & friends help out, but she’s the one having to deal with it on the spot.

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Yes!!! Thousands of small losses😕

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🙏💛

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Katie,

that really nails it down. It is grief at what we are going to lose, but also, anger and frustration at our utter powerlessness to stop the progression of this horrible disease.

All I can do right now is try to give my wife and family some good times and great memories while we can still travel. It's not much in the face of this disease, but it guarantees time with our children and grands, and that is what truly makes my wife happy.

Dick

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I am laying in bed only a few hours sleep last night, I felt so tired before I went to bed, but now I feel like no sleep will come, surviving on s fee hours sleep every day, feel so tired, but no sleep coming my way yet xxxxx

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The sleep deprivation is a killer Yvonne x

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🙏💛

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I had grief though I did not know it, when B was diagnosed....I was angry at him .....Then things that he used to do made me cry///like certain songs that he used to lead at church. Then I got head long into keeping him safe and comfortable and denied myself.....then by the time he died I was prepared but still not ready...and I started all over. But I think I am ok....all of the feelings of shock and remorse seem to be where they need to be and they come out usually when I talk about him and a thing he would do......I miss him but like he and I have always felt, this world is not our final home....

I encourage you to continue grief management with hospice counselor .

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Thanks abirke x

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Dear abirke we also believe we are going to a better place Praise God.

But I wish it would be over soon 💛🙏

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I understand. I don't believe in promoting death, but I would be ok leaving this world...right now....

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Oh Andrea, I know exactly how you feel.BUT we can't let PSP have any more victims, to this evil disease. We owe it to our loved ones to fight and carry on living in their memory.

Sending big hug and much love

Lots of love

Anne

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Don't worry I'm not going anywhere, Anne!!! Especially today....Just got my eyes dilated.....driving back from drs was quite a blurry adventure!

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I've done that before. Great fun, I don't think!

Lots of love

Anne

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I don’t know if I can say how I’m grieving, but I am. That my father is fading; that I can’t have a conversation with him; that he can’t do all the little jobs he always did for everyone; that we don’t hear his dry humour piping up; that my mother has to start feeling and acting like a single person, though she isn’t yet.

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Dear Bolts. I feel the same as you. I think in a while I will go for grieving counseling. I have been loosing my Barry slowly over the past 5 years

He is no longer the man I knew. Other than his humor,smile and twinkle in his eyes 💛🙏

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Dear Amanda, I was only trying to explain this to my friend the other day. I said it's such a hard hard situation to be in as mum hasn't passed yet but the person I am help care for is not my mum as I knew her before psp ravaged her. So I feel I've lost my mum already in one respect but I can't mourn her because her body is still going. How are we supposed to cope with this wretched situation. Poor mum can't move, talk and is barely able to swallow yet still she continues to exist in this shell of a body that holds her together. I totally totally understand and sympathise with you my dear friend.

God bless you, much love Michele xxx

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So true. Jean xx

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Bless you and your dear mum Michele! Thankfully this is an amazing place where sadly everyone does understand x

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💛🙏

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Just the way I feel about Ben, I don't want to pity him but I do as he is so helpless. He used to be such a busy man with loads of energy, how can this deterioration be so quick and destructive to both of our lives and that of our children and grandchildren.

Love Kate xx

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Satt2015, I believe I have been grieving the last two years since he can not walk or stand. Also my husband has quite living he wouldn't go out side in his wheel chair or sit in another part of the house he doesn't play game like cards he obsesses over going to the bathroom which is a potty chair. That's about all we talk about. He is not interested about politics or any thing more. God Bless you😎😘💐Jenny

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Aww Jenny it's simply heartbreaking, hugs x

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This is one of the most heart wrenching diseases Ihave ever seen

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Satt2015 - I think I'm probably in the same space as you, my father has had psp for several years now and much of who he was (witty, active, convivial) has gone. So I grieve for those. And I grieve because he is suffering and there's nothing that can be done to stop it. I think like many, I busy myself with being practical and trying to find solutions to care, and trying to give my mum a break, etc. But grief does sneak up. What I find helps is to talk with friends and family about how he was, just to remember him how he was. And also, in a completely non morbid way (promise) I mediate on him dying, in a sense to prepare myself, and also because it gives perspective on the bad days that it is inevitable and it gives me a bit more stretch. Remember you're not alone, how ever lonely it feels xxxx

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Bless you yertie, I think your definitely in the same place as me!!! X

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Me too 🙏💛

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This disease is so horrible. It's like a rollercoaster

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Agee ! 💛🙏

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My wife was diagnosed recently. She is only 52, but is, we believe, about 3 years into the disease path. We have 4 children - 2 adults and 2 teenagers, and two grandsons. You better believe I am grieving. I still can't get my head around it. And I have become addicted to this site. I am afraid for my wife, afraid for myself, and afraid for my children. My youngest is just starting high school, and she is so attached to her Moms. I truly do not know how I can ever step into her role. I feel so inadequate. I lost my Mom to cancer 10 years ago, when I was in my early 40s. That was devastating...so how horrible will it be for a young girl to watch her Mother deteriorate in front of her as she works her way through high school?

My wife has been an absolute trooper through this entire thing. She is so much stronger than me. When her DX changed from Parkinsons to PSP, I cried and she comforted me. She is the heart of our family.

Me...I am a bag of nerves. I can't sleep, and stay up all night reading all of your stories and any medicall info I can find (Thank you all). But I am a mess, and I know I need to get it together. I just hope the shock wears off soon.

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Aww bless your heart! Your wife is so young, so saddening to read! Your children sadly will adjust, but admittedly it's going to be a tough journey!! Do you receive any help from anyone, i.e. Hospice? Sending you huge hugs x

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Dear D, your feelings were. Just what I felt on dx and I couldn't stop myself using any way to find out more about PSP and half scared myself to death. I now don't research for more info and rely on this site to guide me through. I am more accepting of the inevitable progress of this awful disease but don't have that terrible burden of raising teenage children and young parents/grandchildren and helping them to come to terms with watching their mother/ grandmother deteriorate. Are you and your children having any counselling, I found it so beneficial to talk openly, knowing everything was confidential, it was a great relief to unburden and admit to the dark thoughts I was having.

Sending much love and support

Kate xx

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Hi Dickwin, welcome to this site, that unfortunately, you find yourself needing. We are all carers, ex in my case, or sufferers of PSP. It's good that you say you are addicted to this site. You will need the support only a fellow Carer can give. We all rant and rave, kick and scream, nobody judges, all too busy feeling exactly the same. No doubt a lot of stories have frightened you silly! But I hope you have found some peace in others and had a golly good giggle at many of the tales of woe.

Yes, this is a life limiting disease and it changes everything. But each day is another with your loved one. Please try and stop worrying about the future, concentrate on today. Make the most of every second your wife can still do things. My husband and I travelled regularly to South Africa from the UK, until quite late into his journey. I have some very precious memories from this time.

My main message to you is, live each day as it comes, don't worry about tomorrow, today will have enough challanges. Concentrate on the things your wife can do, not what PSP has taken away and very important, accept every bit of help offered, demand help, from those who can provide assistance. I would strongly advise counselling for both you and your children. Last but not least, don't be a stranger on here. I would never have made it to the end, caring for my husband at home, if it wasn't for the good folk on this site.

Sending a big hug and much love

Lots of love

Anne

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💛🙏

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💛🙏 we are here for you

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Yes for definite. How can you not grieve for the person inmy case my Mum transitioning from a vibrant person who was out enjoying life to the husk I see before me who is now totally dependent n care for everything. I too will feel relief when it is over for her. The Hospice has been amazing. Grieving is different for everyone. I still feel angry tbh x

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Bless you, angry is a huge part of how we all feel x

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