I’ve looked up ambiguous grief and can identify with most of symptoms. Doesn’t give me a way out though does it? And it never will because our lives are turned upside down and we stumble along, on edge most of the time. I’m getting to the point where I don’t know what it’s like any more to live normally, it’s been so long now including Bridget at home with dementia
( around 2015) and in the care home since August 2019.
Bless you all, Peter
Haven’t got much to add, just lost my dear dad two days ago, advanced Alzheimer’s. Just wanted to send my love, thoughts and prayers as the people on here have been a huge support to me and my lovely dad was also called Peter so this struck a chord.
Take care, I’m still in grieving, stress and adrenaline mode so I’m not much help but I am thinking if you and hoping it all comes good for you x
Peter
I still have dreams about hubby. When he was ill had awful ones. He did actually have delirium when he had the last stroke, before diagnosis of dementia, and was good to me on the phone, sometimes in the middle of the night. He didn’t mean it but at the time I didn’t understand that. He wasn’t an aggressive man, so it was a shock. I’ve had flashbacks about that. Horrible.
Identifying with situations doesn’t give a way out sadly, but I found they helped me to understand my own feelings of despair.
My heart goes out to you.
I hope my telling of my experience is the right thing to do for you?
i’ve realised that i’m missing my cat. He died a week after Bridget went into the home and he was my constant anchor in the dementia storm. Always cuddled up to me and gave me companionship when Bridget couldn’t. Cuddling, oh how i miss that.
I went to home today and i had a moment of imagining that Bridget was beside me in the car as she was when we went out anywhere. The last time that happened we went out from the home to the garden centre in 2019 and then she didn’t want to go back to the home. I felt really bad and sneaky. To be in the car now would feel extremely strange and poignant.
Today she had enough empathy to realise that it was cold outside and wanted me to come into the home into the warm. I said i couldn’t because i had a bad cold.
No one, except those of us who have experienced our love one’s with dementia, losing or have lost someone, can understand the day to day grief. The one i really want to talk with about the grief is Bridget. She would understand and give me comfort.
I’m speaking with my counsellor tomorrow after a two weeks break.
Peter
Spoke my Counselling 4 carers counsellor this morning about all sorts of issues to do with my dementia experience and my loss of Bridget. She suggested one way to try and remove or at least be free of a problem is to label it as a balloon. After much thought, heart searching, and a degree of acceptance, see if you can let the balloon go. I’ll try anything if it gets results.
We agreed, and she insisted I understand, that there never going to be a time when I’m done and dusted with grief over Bridget, just a loosening of emotions. She feels even after 19 months it’s still early days for me.
Yes, that’s very true. I miss my husband all the time, but have made a new life for myself after 14 years. I remember all the fun we had together, and smile. When I go to weddings, I listen to the marriage vows and know I kept them all. Your situation is so, so difficult. I had the best mother in law, but she developed dementia and spent her last year in a home. Sadly my husband’s sister has also died of dementia. There was never a cross word between us. We used to have very regular family get togethers. Has anyone mentioned the “balls in a jar” theory to you? Somehow you need to build a new life for yourself. Do you have any hobbies or interests? Whilst getting together in person is difficult, there is so much on the internet. Make plans for some day trips later in the year. NOT places you went as a couple though. It’s time to make new memories now, to discover the new you. It’s a bit like a toddler learning to walk, you will fall over, but gradually manage things better. What would your wife say to you if she knew how you felt now?
Thank you. It’s very hard trying to imagine what Bridget would say if she was able to realise what I’m going through. I’d like to think she’d be both appalled by level of upset and wanting to comfort me with her love.
To go away, to make new memories seems traitorous at the moment, in as much that I’m so used to doing stuff as a couple. It would feel awkward and really sneaky doing things on my own. Weird or not weird? I don’t know. And I don’t have an idea about building a life for myself even though I know I must. Just doing stuff around the house and garden is enough at the moment. Covid is restricting us all now anyway.
I had major surgery in December 2004, it was touch and go whether I would survive. I told my husband that if I didn’t make it, I would want him to find someone else as I knew how lonely he would be on his own. He told me the same applied if he went first. Sadly, he died 18 months later of a heart attack. I pulled through the op, although it took me 3 years to recover, more or less. Having been so determined to get better, I didn’t want to squander the rest of my life. Taking the odd day out would not mean you cared any less for your wife but a little escape from the situation, some self care, would do your body good.
Peter
I understand that you can’t do anything different at the moment. I too felt disloyal thinking of meeting a friend for a catch up, cuppa etc. Then one day, I had an appointment, so my friend met me, when we did go to a coffee shop. I then visited hubby. Realisation hit me. He hadn’t suffered because I took an hour out ( constantly looking at my phone!) Seeing my very understanding friend had helped. So once a month we met up. My husband would have wanted that for me. Eventually we went a little further afield. Then day trips a couple of times. I missed, and still do, days out and holidays with hubby, but sadly realised they were not to be, ever again. It doesn’t mean I’m not allowed to do things for myself. I turn my reasoning round now. Life is to live the best I can, and not just exist. Obviously covid has changed this for the time being.
hi everyone
So, i’m still in bed ( 11.00 am Saturday morning) and really see no point at the moment getting up. I justify this by reasoning that i’m on my miserable own but at least with Bridget safe and sound in her home blissfully unaware of lockdown.
I asked my counsellor on Thursday if i was making too much of my situation, was i going on too much when others are 10 times worse off than me doing what they have to do day on day, and perhaps having the same life as i did when Bridget was at home here prior to her going into here care home? Absolutely not she said, what you and many like you have experienced justifies all the help you can get. I’m experiencing ambiguous grief in that i can’t resolve the unhappiness i feel for all i’ve lost and that gives you reasons to need specialist care through counselling. What’d know!, us people on this dementia journey are special and it’s something i’ve know since the beginning.
And then there’s Covid and all the misery that’s causing and the unnatural way it’s forcing us all to stay behind closed doors for protection.
Is it any wonder we want to curl up in a warm bed and shut the world out. So i fumble through another day knowing that i’m getting through it till the night when i can sleep.
peter❤️
Peter
Your post has more positive vibes! Counselling seems to be helping you. So pleased. You are important too. Having a lie in is good especially as it’s cold out and we are told to stay home as much as possible. No doubt you will up when you feel hungry or in need of tea/ coffee, whatever you drink. Just because we do things for ourselves, does not mean we have any less love for the person we are missing.
As someone who can’t sleep when I’m stressed, maybe the very fact you can settle and be comfortable in bed is a really good sign?
hello Peter
I lost my Mum to Alzheimers just a few weeks ago. i have barely cried since she passed away, maybe it will come later. However, I did cry and cry for months and months when she was deteriorating. i cried in her care home room, in her toilet, in the car, in my house, just everywhere because it was so awful. Anything would set me off and I slept with one ear cocked for the phone. It is completely understandable how you are feeling right now.
My Mum could not have been cared for better by the staff, they were truly amazing and I am pleased you are happy with your wife’s home too. The frequent falls are part and parcel of the illness I’m afraid.
I feel relieved now that Mum does not have to suffer anymore because it wasn’t my Mum lying there in that bed looking vacant and repeating over and over again “I don’t know who I am”.
Can I recommend a book “The Little Girl in the Radiator” by Martin Slevin? It is poignant, moving and sometimes funny and tells the story of his Mum’s dementia journey. You can usually get a copy on Ebay. He had to learn about dementia as he went along like most of us do.
It must be hard for you only being able to see your wife from outside but I am sure if she deteriorates they will class you as an essential visitor and allow you in.
Take care and know you are not alone. X
As this is all anonymous and you don’t know me I’m going to say something that I’m bitterly ashamed of now and can’t put right and just shows how how shallow I am, and I believe, always have been.
I was more concerned sometimes with what my wife looked like and concerned what others might be thinking about her than what she must’ve been experiencing with her deterioration with the dementia. She tried her best, bless her, but I couldn’t see past her appearance. I mean, what is wrong with me? I’m talking this over with my counsellor next week, but I am so ashamed that I needed to offload this now. I feel sometimes that I just don’t deserve the help and support given. In fact what I do deserve is to be thought superficial and weak.
Now I’m feeling this it’s now something else that torments me. I don’t need forgiveness for that would shame me more, just to be noted by us carers.
Peter
Peter,
I see nothing wrong with that thought. Just shows you are human.
I was concerned about my mum’s appearance too. I think because dementia strips away the sufferer’s dignity. I did not want her dignity stripped away any more than it had to; it was something which one could control. I also knew that mum pre-dementia would have been horrified if she looked scruffy or unkempt.
Personally, I would mention it to the counsellor as it is a safe place and non-judgemental, as I hope is this Forum.
Take care, Anne
Hubby was a very smart man. Wouldn’t dream of going out without cleaning his shoes brushing his clothes down etc. Before diagnosis, I too almost panicked at his lack of what I considered pride. Esp as he said often his appearance was down to me looking after him! I thought people would blame me. I understand where you are coming from Peter. Please don’t beat yourself up. Nothing wrong with your thoughts. Your honesty is, and will be valued by others in similar positions.
In the rawness of the moment I want to share how I’m feeling. Just come away from a visit to Bridget and had to park up as I can’t go home just yet as I’m too upset.
I went with flowers and they had to find her as she was walking around. I stood at the inner door and she was brought to the half glass of the door to see me.
She smiled warmly at me me. She’d had her hair washed and she looked lovely and I told her she looked beautiful. She then said “you need to come in” in such a way that I think she realises I can’t. She then walked off. All told 5 mins of restricted contact. The business of the home continues around her.
Like so many of us this is agony and the knife is turned every time we go. No wonder we get anxious when we decide to visit. Covid has quite rightly taken centre stage but when we’ve lost our love ones support it’s doubly hard.
I so want her in my arms again but I think she would react alarmed as she doesn’t know that closeness of me anymore. I can’t have what desperately want and this separation is a killer.
peter
Peter,
Each time I walked down a long driveway to see my husband in the nursing home,and even the numerous time he was hospitalised, my stomach and heart would lurch with anxiety. Then paint a smile on my face. Often sat on one of the benches outside when leaving to compose myself. I don’t drive, so often it was public transport home.
It’s heartbreaking, and I know many of us long for a cuddle.
Thinking of you.
Peter, I think we all understand how you feel and you, are in a way, grieving.
I filled my Mum’s room with photos of her as a child, as a young and beautiful woman, as a Mum and as a grandmother and greatgrandmother. If a new member of staff started I would make a point of showing them what she was like and kind of reminding them that the very old lady in front of them was once a very vibrant and lovely woman.
I know you can’t do that personally right now but could you photocopy some nice photos and put them in an album for your wife and staff to look at together?
Hi everyone. Let me first say that i’m dreadfully aware that i’m not the best at helping others through their torment in that i’m not following any post directly as you follow mine. For this i’m sorry but on the odd occasion if I can help i’ll try.
I suppose it goes without saying that to lead a solitary life after a number of years together seems not only strange but not normal. I often imagine Bridget sitting on the sofa, us just being a couple, the most normal thing in the world you could say. I guess it’s the stillness and quiet of the house that’s so palpable. I’m beginning to forget what it was like with her being here and how we led our lives before dementia . But trying to remember upsets me even more because that can never be again.
Shes in a home that i’m pleased with. If she wasn’t we’d be having a different conversation.
Sometimes when i see her there are moments of clarity that fool my brain into thinking that she’s ok and when i can finally enter the home we can communicate again. But, once again, i’m continually grasping at something that her dementia is going to be take away. And if I totally rely on my life being one of grasping for some sort of meaningful relationship with Bridget then what chance do i have of having some form of life away from her which i’m forced to have. It’s an agonising position to be in.
Anyway, i’m going on a bit here. I’ve said before that what i write is to get it “off my chest” so feel free to reply or not.
I’m mindful of you being alone right now, like me, and i send my love to you.
Peter