Dementia journey

hello. I’m peter and my wife Bridget has been in a care home now since August 2019

She has dementia, doesn’t recognise me as her husband and i’m finding it extremely difficult to come to terms with all i’ve lost. She’s mobile, walks about, generally fit but because of the dementia sees me but soon is distracted. I take flowers, look at her through the window. Covid restrictions allows me nothing so i look and see a woman who was once my darling wife ( she’s 74) who seems content. it’s me left with the memories and how this cruel condition has wrecked our marriage

I’m lonely for her, even though towards the end all she wanted to do was escape the house and i was forced to make care home arrangements. Such an intelligent, bright, forceful woman reduced to a almost childlike personality. The care home is great and i’ve no complaints. At first i wanted her back just to have her company but i know it takes more than me to keep her safe and healthy

I don’t mind admitting that i often cry at the slightest reminder of her or if i see her and i just sit in the homes car park after a visit. I love her so much. It hurts all the time and i lurch from Why us? to Why me? If only this and that and i should have done more. I don’t care for her directly anymore and i miss that caring role ( although it’s nice not being woken up at 2 in the morning). i need to care for her but i can’t so i do all i can by regularly visiting, taking flowers, chocolates, fruit and showing appreciation to the wonderful staff.

Peter

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Hello Peter. my husband died suddenly in October. I am having a bad night tonight feeling very lonely for him and your post made me want to reply.

Your situation sounds like absolute torture. I think you are doing everything you possibly can. I don’t know more you can do and no wonder you have these thoughts as why indeed, it really is so unfair, you are within your rights to feel however you feel.

I hope you can get a peaceful sleep. You’ll need as much strength as possible to survive this awful trauma you are going through. Take care of yourself… i am so sorry this is happening to you both.

Hi Peter - my heart goes out to you. Dementia is such a cruel disease and has such a huge impact on the loved ones trying to cope. Having to see your loved one change and not know you is such a loss and you grieve the loss of the person they were. She is being looked after and it sounds like they are doing a good job and you have done the best for her and continue to do so. I’m sorry nothing I can say will make things better but coming on this site has helped me and just writing about how you’re feeling and being with others that understand helps. I cry most days and its ok to wallow sometimes -we have to be kind to ourselves x

Hello Peter. i feel so sad at the situation you find yourself in. What you are suffering at the moment is known as anticipatory grief. You are doing everything right for her and she will understand that deep down even if she can’t verbalise it to you. Now you must gather your own strength mentally as well as physically so that you can be of most help to Bridget. You will find kind understanding people on here and we are all grieving for what happened to our loved ones whether they are ill like Bridget, whether death was sudden with no goodbyes or whether it was a long or painful illness. The timing is never right. We grieve for what they have lost as well as for our own pain. Keep posting on here however raw your feelings are, and if you need to shed tears you will find them healing. We still talk to our loved ones even when they have died so I’m sure if you talk to Bridget day or night she will receive the love you are sending her.
Sending love to you Peter. xx

Thank you everyone for your replies. It means a lot. I’ll be posting soon again no doubt
Peter

Something else has set me off and i’ve dissolved into tears again. It’s Saturday lunchtime and it’s quiet and i’m alone.

I still acutely believe I drove my Bridget away with my ongoing selfishness and being a self centred person, that i’m convinced that has been my basic personality. Why am i like this and I alway think i’ve been like this and now i’ve lost my Bridget for ever. I’m an only child … does that have any bearing, i don’t know, but i’m not that bad am i? …i just can’t seem to come to terms with anything.

Yes she has dementia but I can’t help thinking that just thinking of myself somehow made matters a lot worse. And now i’m paying the price. Bridget hardly ever felt she came first, always thinking of others, helping out, big family person, but me on the other hand mostly felt for my own wants. It seems that way.

Can this type of thing drive another away? It certainly can in normal relationships but can it magnify and increase the chances of dementia and Bridget’s need to escape the house and me. You see, i just don’t know for sure and not being sure one way or the other makes me very unhappy.

Once again thanks for listening

Peter

Hi Peter
I dont know how long your wife has had dementia or how long you had been taking care of her needs. But you clearly are not selfish in your caring for her at home and now from a short distance when you visit.
A selfish person would not have cared as you have. Your wife stayed with you because she loved you warts and all. None of us are perfect but we do know what love we had or have for our wife/husband and I am sure they know to. If they were in our place I am sure they would have the same thoughts we have. We all have our doubts but we all do the best we can with what we have. Your wife knows your love even if she doesnt always remember.

Like any dementia journey it’s a bit of a saga. Bridge was first diagnosed back in 2017 but was displaying symptoms earlier than that. So between then and going into a care home in 2019 I had to experience non recognition of me as her husband, aggressive behaviour, no personal hygiene. So in the end I had no choice as I couldn’t cope with it on my own, she needed a team of people to help her.

The home is marvellous thank goodness. It’s just me left with the memories and so many conflicting emotions that impact my day to day life.

Bless you for your kind replies

Peter

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Hello Peter. The guilt you are now feeling about whether you were a good enough husband is one of the natural stages of losing someone - albeit at present to dementia. We all question ourselves when we are alone and have so much time on our hands. It is because we so much want the best for our loved ones so we feel that our best is not good enough.
Have you tried writing down all the good times you’ve had together. It will reinforce that you did have a good life together even if it feels sad to write it down. You can still talk to her anytime because she may even feel the good vibes you are sending.
Try anything just to keep your love alive in your heart. Much love. xx

Just been to the home to see Bridget. She was asleep but they woke her and brought her to the door to see me. Very vague and disoriented today. She’s surrounded by staff all wanting to do stuff. Open the banana, give her the flowers and I know i wouldn’t have stood a chance on my own caring for her now, especially in these dreadful pandemic times.

But oh the sadness of it all. She looks at me with little comprehension and turns and walks away. I feel so sad for her, not because of her care but because us as a strong vibrant couple is no more and it’s lost to us both.

It’s extremely difficult to describe emotions in words sometimes but I try my best. I feel sorry for myself and for her. And I’m also drifting away very very gradually, day by day, from her and the ordinariness, quite simple life we had. She’s a woman I used to know. And feeling like this makes me feel somewhat awkward and a bit of a deserter.
I’m currently in a car park and miserable. Perhaps a silly film later will cheer me upGrinning face with smiling eyes :smile: Peter

@Peter11 there is no way of coping in a heroic way more than what you are doing… Bridget as you knew her does not exist so you are well within your rights to mourn that fact, you are not a deserter because you keep going back despite how painful it must be. If you did not go back to visit her now though no one could hold that against you as she is not her… I am so sorry, it is absolutely awful and there is no way to sugarcoat it…

I hope you can find a film or anything you can to help you relax a little, you need any help you can get because this is too much stress to bear all the time. Self-preservation must kick in and numb you a bit I hope at some point so that you can have a little peace for a few hours, I really hope you get that tonight. It is obvious you love Bridget so much, it would have been obvious to her when she was herself. Take care.

Thank you. I know that she has her world now. Me seeing her for just a few minutes 3 times a week is not going to register in her damaged memory. The home is all she knows now 24/7 and although I’d like her to love me and remember me and want me, well, it’s just me wishing things were different. And if she did have those things she’d miss me and be very unhappy. So I need to accept the reality of it all but it’s impossible and I can’t get round that.

Bless you for your help

Peter

Hi there. I’m so sorry that you now find yourself alone after losing your husband. Words are all we have here to try and get across how we can support each other.

We can’t just sit with someone quietly just being there for them. And if we could perhaps there are no words just a fellow feeling understanding.

Lovingkindness to you

Peter

When will this misery ever stop? I don’t know why but lm in floods of tears right now thinking of the times before Bridget went into the home. I didn’t really appreciate at all the anxiety she was going through. She made me drive to the hospital 4 times looking for her husband and I was so cross and shouted at her. The night before she left here to go to the home i barricaded my bedroom door to stop her coming in at 2 in the morning to plead with me to take her to her parents.

I heard her get up and slowly walk along the landing and then she gently tried my bedroom door handle. I watched it turn and did nothing. I just hoped she’d go back to her bed which she did. I abandoned her when I should have taken her in my arms and tried to comfort her. What sort of man am I? I think of these moments now and I’m ashamed at my behaviour

She so wanted release from all the anxiety and panic dementia brings and I couldn’t do it.

I kept going with her for nearly 4 years of some sort of dementia behaviour. I lived with it and tried my best to fit in around day to day dementia problems. At first it wasn’t too bad, we had some form of good life, we went out, did things, but more and more the dementia impacted in our lives.

Now she stoically gets on with her life in the home. You know what, she’s never cried once throughout all of this, never cried over her dementia condition, never cried when she couldn’t escape the house and never cried because she’s now in the care home.

Again thanks for listening. Peter

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Hi Peter, You are putting yourself through hell at the moment with all the looking backward. If you are honest with yourself you will realise that you were becoming worn out with all the confusion that was going on. You were also frustrated that you couldn’t get into Bridget’s mind to help her. You were both on completely different levels. It is natural to think we could or should have done more. It is part of the grieving process and now we have got more time to think and dissect those moment we often come up with the wrong answers and conclusions.
Bridget is happy where she is and you are happy that you are visiting and playing your part. You are still a couple albeit in different roles in the marriage. Please don’t feel bad about anything you have done or not done. We all do what we think is right at the time. It would be wonderful if we could see our future and then play it backwards. It would give us all the answers and we could act accordingly, but sadly life isn’t like that. If you have a faith of any sort then hang on to that, but most of all try to be good to yourself. Love and light, Jean.x

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I bet you are all sick and tired of me coming in here day after day unloading one emotion after another. But it’s all I’ve got when I’m only speaking to a counsellor once a week for an hour when she’s really needed whenever I feel like I do now.

I went out today to do some shopping and found when I returned I had stupidly left the front door open. My first thought was that someone had got in. Then my brain went straight into fantasy mode and I believed that Bridget was back, that all was ok and she was sitting on the settee and she’d say hello. It’s so cruel the way the mind plays such tricks.

Then I phoned the home just to be a little nearer to her. She’s ok they said, just having a cup of tea. It’s so miserable being like this , missing her so, forgetting so easily what it was like when the dementia behaviour was so bad.

She stopped recognising me as Peter her husband back in early 2019. Told me to stop touching “his clothes “, went looking in sheds, rooms and streets for “him”. To be rejected as her husband and as her love was terrible.
Now I see her 3/4 times a week but what if I stopped going? I doubt she would remember and I doubt if she would ask after me. But I still go because I can’t do otherwise even though it breaks my heart each time I see her.

Peter

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Hello Peter, Slow your mind down a bit if you can, otherwise you will get totally overwhelmed. You are trying so hard to come to terms with all Bridget’s problems as well as your own. Just do manageable chunks at a time. Bridget does not appear to be suffering as much as you are so you can be thankful for that. You are of sound mind and can look after yourself so be grateful for that too. What I am trying to say is that however bad life feels at the moment it could be so much worse. You are coping and you understand the dementia situation very well. Deep down Bridget loves you which is why she doesn’t want you touching ‘his’ things because they are so precious to her. Accept that she is still Bridget and that your love is still there between you. Nothing can take that away. The years may play cruel tricks on us Peter, but the love can NEVER be lost or removed. It will stand for all eternity so please try to take comfort in that.
Love and light…x

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Hello Peter,

I have drafted several replies to you recently but feel they are totally inadequate. However, I have a very similar story to yours and the lovely Bridget’s. I don’t have a happy ending or enough words that could bring you peace, at this time.

Just know that what we have had to do for the person we love more than anything else in the world, is the most heart wrenching thing and takes great courage and strength to firstly put the wheels in motion and then go through with it. Don’t look ahead, keep in the day, hour or moment. She is your wife and your beloved. Nothing or nobody can change that. Take heart, keep yourself well, you owe it to her.

Please get in touch to chat and let me know how your day is going.

Kind regards, :rainbow: x

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Two things happen today. At 11.30 I have a zoom meeting with my counsellor. I’m very fortunate that I got back onto her list after meetings stopped back in March 2020. We go over most of the stuff I post on here. I try and collect my thoughts and write down what I want to discuss. It’s strange because part of me doesn’t feel I deserve such attention because others are going through much worse than me. I’ve explained this to her but she feels I’m as deserving as the next person.

I’m also going to see Bridget this afternoon and I always, always feel apprehensive as soon as I get in the car to go. Will she be attentive, say something that pulls my heart strings. Will I come away happy or sad?

So all in all a bit of a emotional day.

Peter

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Hi Peter,

Thinking of you this morning as you prepare for your session.

Your visit can only be as good as circumstances allow. Unfortunately, you are unable to foresee any issues. I always felt emotionally challenged during each daily visit but reluctant to leave his side.

Take care and stay safe.

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