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Dementia’s journey

big l

Registered User
Aug 15, 2015
50
I’ve seeked help and had a number of counselling sessions and prior to lockdown was promised 6 more. Everything stopped. The counselling was withdrawn. (Counselling for Carers through the GP)

I’d probably go back to the same counsellor given the opportunity but she’s not working now because of Covid. We built up a good relationship. To start again with someone new is not something I want to do. Done the drugs from the doctor....waste of time. The help I find most accessible is here, on the Forum.

Im interested, where have you found the counselling service, unless it’s private ? I initially went private but it wasn’t carer based and cost £80 a session

Thanks for the comments. Peter
Dear Dutchman, yes the counselling is private ( it's £40.00) but is not an option to stop at the moment, because I feel she is helping keep my head above water. It is an ongoing form of grieving without the 'reassurance' of a burial. What isn't any more is the unbearable part we're grieving for, and tomorrow it will be different but the same. And the next day. So we have to learn to live with it rather than get over it. My counselling is over the phone, not perfect, but better than the pain without it. Do try again to access counselling - even if you will have to go through the sadness, it might, just might, bring some respite? Take care of you - remember - put your oxygen mask on first. You're no use to anyone dead!
 

Dutchman

Registered User
May 26, 2017
817
Devon
i’m lucky in that she will counsel me at her home and is charging 30 a session which i consider a bargain. That’s of course if we get along and make progress. Went for a long walk today to get fitter and it gets rid of time just sitting at home. At least when i come back i can say i’ve accomplished something. Got soaked so i’m looking for a better coat.

i’m going to see Bridget tomorrow and probably will have pangs of all sorts of emotions. I expect it and suppose i have to get on with it. A typical day at the home for Bridget is ....get up, wash, breakfast, maybe an entertainer, dinner, sleep, lots of walk about, supper, bed. This is in contrast to when she was at home here... got up at random time, no washing, breakfast if we’re lucky, sit on sofa all day with daytime Tv, bed. Oh , and lots of random anxiety, fretting, me shouting and not coping.

God bless, Peter
 

Dutchman

Registered User
May 26, 2017
817
Devon
At the moment I am having counselling Dutchman because I couldn't stop going over and over and over (and over) what might, should have been if only we had, he had, I had. I tormented myself and it almost became a 'comfort' to deprive myself, to self harm. My councillor - not immediately of course! introduced me to the idea that I was indulging myself, wallowingfin this blanket of sorrow because it was 'just and fitting'. Self indulgence. No I can't tell you how to STOP, only that if you don't it will destroy you, and you will not be there for Bridget at all. It's a cross between self harm and self indulgence. Hard to come to terms with, but why aren't you seeking help Dutchman? Ask yourself that.
Hello big I

I had quite a good day today one way or another. Walk, bought plant, made a good meal for myself and sorted out my overdue work in the shed.

So far so good, until I just thought (. 5 mins ago) in the quiet of the evening i’d look at recent photos I took of my wife being led outside by staff in the grounds of the home. A close up of her face reveals a lost person, that dementia far away look trying to make sense of the world around her. God it’s so upsetting when i imagine if she’s upset also and anxious. So much i want to comfort her and help her with my love. But i can’t. Not even allowed to hold her hand.

I’m assured by many that she won’t remember my visits and she’s not suffering like me. I hope very much that’s true as i don’t want her upset when i’m not around.

What a awful situation we’re all in. Anyway, i’m off to bed and a release hopefully through sleep

Peter
 

Dutchman

Registered User
May 26, 2017
817
Devon
I use TP very much like a blog so that i can get my thoughts down as they happened so i hope that ok with the rest of my virtual friends out there. It helps to get some clarity and to try and make some sense of it all.

All through my journey with dementia you’ve been there for me so a million thanks for that. Looking back it was early 2017 when i first started here. That first admission that Bridget had dementia and over all the time till now wrestling with all the ups and downs of emotions that we all have. The anticipatory grief that wears away at any peace we could have. Now Covid and lockdown is here we are challenged again when we can’t visit and when we can we can’t touch.

Today i visit again but always, always get upset but i need to go to maintain the fragile lifeline of care i have for Bridget. I’m off afterwards to look at at decent coat for walking, so retail therapy here i come! I’ve plants to plant in my garden which is another type of therapy and (you’ll be ever so proud of me) i’ve tidied up my tool boxes so i can now find stuff.

Sleep is a blessing as it gets rid of several hours, although i often dream of Bridget as she was pre dementia and we’re an ordinary couple doing ordinary stuff. That can be very upsetting but it can include her talking to me which is conversation i haven’t had for years.

Bye for now. Bless you all. Peter xx
 

big l

Registered User
Aug 15, 2015
50
I use TP very much like a blog so that i can get my thoughts down as they happened so i hope that ok with the rest of my virtual friends out there. It helps to get some clarity and to try and make some sense of it all.

All through my journey with dementia you’ve been there for me so a million thanks for that. Looking back it was early 2017 when i first started here. That first admission that Bridget had dementia and over all the time till now wrestling with all the ups and downs of emotions that we all have. The anticipatory grief that wears away at any peace we could have. Now Covid and lockdown is here we are challenged again when we can’t visit and when we can we can’t touch.

Today i visit again but always, always get upset but i need to go to maintain the fragile lifeline of care i have for Bridget. I’m off afterwards to look at at decent coat for walking, so retail therapy here i come! I’ve plants to plant in my garden which is another type of therapy and (you’ll be ever so proud of me) i’ve tidied up my tool boxes so i can now find stuff.

Sleep is a blessing as it gets rid of several hours, although i often dream of Bridget as she was pre dementia and we’re an ordinary couple doing ordinary stuff. That can be very upsetting but it can include her talking to me which is conversation i haven’t had for years.

Bye for now. Bless you all. Peter xx
How very strange 'comfort' is. I've tidied cupboards and I too love my garden. In fact I love it beyond and above for the sanctuary (and sanity!) it brings. My husband is at home, but this husband looks like, but just isn't, my husband any more. He's my pod - my name for 'patient', which seems cold and detached (don't ask!) I too grieve recover, move on, go under, then... it's a rollercoaster of emotions, so hang on in there get your waterproof coat on and walk in the rain - very therapeutic! Take care.
 

Dutchman

Registered User
May 26, 2017
817
Devon
Here’s my thoughts for the day.

Went to see Bridge this morning and after her taking the flowers, chocolates and bananas she said to the staff “ he’s a nice man “ which is all i can really hope for. I’ve booked in a half an hour session next monday but that only means i get a more relaxed time sitting in a constructed cubicle for max 5 mins. Bridge get distracted quickly.

I know this is stuff i’ve said before but there’s another opportunity i’ve realised is here to bring on guilty feelings. This time i’ve managed to not fill my day with upset about Bridget, i’ve forgotten a little about her, she’s been in the background, but when i realise this has happened i’ve physically lurched emotionally and had to stop and get my breath back.

I feel guilty that i can get through the day not drained of energy due to heartbreak. I feel i need that pain to somehow to connect with her and the awfulness of dementia. Does this make sense?

Im at my daughters this weekend so that’ll be a distraction. Last time i was there (January this year ) i was a bit of a mess so hopefully this time i’ll be better company.

Peter
 

Dutchman

Registered User
May 26, 2017
817
Devon
Well i’m here at my daughters being looked after. They’ve gone to bed and left me to my own devices and it’s quiet. I’m looking at the pictures i’ve taken of Bridget and ache for her recognition and love. There’s one i took last week where she’s holding out her hand, smiling at me, wanting to take the flowers i’ve brought. It’s so easy to think she’s pleased to see her Peter, her husband, but i know it’s not true. This dementia and lockdown are wicked, aren’t they?

I can’t wait till Monday to see her which is my “booked time” so i’ll visit on the way home tomorrow.

I’ve said it, we’ve all said it, that what we really want is our loved ones back before dementia struck and it’s this longing that upsets us so.

bless you all , Peter
 

Lirene

Registered User
Sep 15, 2019
211
Hello Peter,
The pure hell of night, our thoughts, our demons rearing their ugly heads. All alone with our minds in turmoil. Calm your mind Peter, slow down your thought process and relax in the absolute silence. Breathe deeply and slowly. Let the blackness of the night heal and comfort you. You are not alone Peter, the Lord is with you and he gives you a tomorrow.
My prayers for you and everyone xx
 

Wifenotcarer

Registered User
Mar 11, 2018
319
Central Scotland
I don't know if this will be of any comfort to you but I felt compelled to share my thoughts with you because we started our similar journeys at the same time - You with Bridget and me with Ian. Yesterday we said our final goodbyes at Ian's funeral. Ian's struggle (and mine) is finally over- He and I are finally at peace. BUT........
In the last few days in hospital, we were allowed unlimited visiting, day and night. I was able to hold his hands, smooth his brow, wet his lips and tell him how much he was loved. He was unable to speak but one time when Daughter came in he looked at her and said her name clearly, so we knew that deep down he recognised us.
The preparations for the funeral involved hours of looking at photographs to choose some for the order of service and listening to all of his own recorded music to choose 3 pieces for the service. This was not a sad task but meant we reviewed his life from childhood to old age and saw that it was a good one.

I don't know if it is possible to do this while your loved one is still alive but lost to you. I do know that the love still remains in their heart and yours. You know that you loved and were loved and that love will last forever.
 

Grahamstown

Registered User
Jan 12, 2018
1,722
80
East of England
Dear @Wifenotcarer my deepest sympathy to you and fellow feeling as I lost my dear husband in February and I am finally not tearing up at the most trivial things. I know that he loved me to the end even though he was so poorly. It was the way he looked at me and there is something of this the way Bridget looks at Peter. Deep inside there are still small connections being made, faint but there.
 

Dutchman

Registered User
May 26, 2017
817
Devon
I don't know if this will be of any comfort to you but I felt compelled to share my thoughts with you because we started our similar journeys at the same time - You with Bridget and me with Ian. Yesterday we said our final goodbyes at Ian's funeral. Ian's struggle (and mine) is finally over- He and I are finally at peace. BUT........
In the last few days in hospital, we were allowed unlimited visiting, day and night. I was able to hold his hands, smooth his brow, wet his lips and tell him how much he was loved. He was unable to speak but one time when Daughter came in he looked at her and said her name clearly, so we knew that deep down he recognised us.
The preparations for the funeral involved hours of looking at photographs to choose some for the order of service and listening to all of his own recorded music to choose 3 pieces for the service. This was not a sad task but meant we reviewed his life from childhood to old age and saw that it was a good one.

I don't know if it is possible to do this while your loved one is still alive but lost to you. I do know that the love still remains in their heart and yours. You know that you loved and were loved and that love will last forever.
i’m so so sorry that Ian has passed away but im also glad that you have said that you feel peace. Love that is strong is probably the last thing to go, and although i’m no expert i’d like to think that’s true. I want to say more but i’ll leave it for this evening and message you all tomorrow.

Bless you, Peter
l
 

Pepp3r

Registered User
May 22, 2020
52
Im not sure how to put this as it feels like I'm intruding , but I read and follow your stories and find the strength and inspiration to keep going . Even when your own sadness is palpable you all find the time to reach out to others. I wanted to let you know how much it helps .
 

Dutchman

Registered User
May 26, 2017
817
Devon
I’d just like to say that tomorrow i’m going back to counselling to help with the remaking issues i find so upsetting. Let’s hope the counsellor and me can get somewhere with making sense of this dementia journey.

I sometimes think that the most beneficial counselling has been all you out there on TP. What would i have done and made it this far without you.? I had a 4 hour trip on a rain soaked motorway this afternoon so i had plenty of time for all my upsetting emotions to go round and round in my head. Sometimes they are so crystal clear and organised and at other times jumbled up, overlapping and messed up. Perhaps we feel better when we accept things in our hearts.

Goodnight,
Peter
 

Dutchman

Registered User
May 26, 2017
817
Devon
Am i selfish or what? I feel that compared to others and what they’re going through that i should be able to shoulder my emotions better. Some you guys have it really tough and i feel such sympathy and the care you give to the day to day upsets and dementia related problems.

When my wife was going through all the dementia behaviour i sometimes coped but often as not i didn’t do well. I feel i’ve always been a fairly selfish person and the last few years of living with Bridget brought my selfishness into focus. I could have been so much more compassionate and kind. I now think i was mean in the way i treated her sometimes wanting time to myself, not actively engaging with her when she couldn’t converse, just really not going that extra mile to be more with her as a loving husband should have been.

Perhaps it’s easier with hindsight to make judgements about how i handed things ( or not) at the time. Or it makes me see things more clearly when i couldn’t then.

Anyway, i really don’t expect any comments as i’ve probably been down this road before. Just getting my concerns out there
 

Lirene

Registered User
Sep 15, 2019
211
Peter. Bless you, we all have concerns, regrets and certainly there are times when any one of us loses our patience, are selfish and downright horrid and at times regretfully cruel. We all dwell on the things we have done, and wish with all our heart that we could turn back the clock, start over and then we would have all the patience, unselfish attitude, kindness itself and be absolutely altruistic. Definitely do things differently! However, even if all this were possible we would not have a hope in hell. After 24 hour caring, answering the same question 40 odd times, cleaning and changing umpteen times, trying persuasion, asking, shouting, screaming, pleading, calming and even entertaining etc we are expected to just carry on regardless, robotic, carrying out each task, devoid of thought just overwhelming exhaustion, no point in us, no friendship to speak of anymore, no discussion, no laughter, no loving and certainly no marriage, nothing as it was or will be again - just caring, just waiting for one smile, one kind word - please, thanks - but nothing just emptiness.
No one is a born carer. we are all human with every fault you can name and more. No one asked us, taught us. sent us to Uni to learn how to care for someone who has forgotten how to care for themselves never mind others - none of which is their fault or ours, just the luck of the draw. fate, destiny, genes, DNA or even ‘ it’s written in the book of our life the Lord has’.
Absolutely not ? maybe, possibly no one knows but we can only do our best. carry on, cope with little or no help whilst trying to protect ourselves from the hurt, permanent anxiety, and stress whilst always trying to hold our innermost feelings and emotions in the background sometimes for years and all these feelings have to come to the forefront, we cannot and certainly should not bottle them up Peter, each one of us have regrets and feelings of guilt we are human it’s evolved in every one of us, if only - I would have, could have, should have, definitely would 100% no question - but we would not and we have to learn to live with the - I did my very best, my utmost, tried my hardest, everything I could, would have given my life for. The mental strain on a carer is one of the most misunderstood aspects ever, and it is totally understandable that you feel as you do but you must accept it and recognise that it normal to feel this way. However, please don’t ever think these feelings are unique to you, as they are certainly not, everyone feels the same, just some find it easier to cope with them but believe me everyone’s feelings surface from time to time. There is nothing actually wrong with you Peter this is part of a massive massive change in your whole way of life, your hopes and dreams have been crushed but you must believe that you will get through this and come out the other side, different and changed but still the same Peter.
I often think this is our hell, on earth, and who is to say Bridget has not escaped this hell and gone forward into a better world.
My prayers for you and everyone xx
 

Wifenotcarer

Registered User
Mar 11, 2018
319
Central Scotland
Well said Lirene. I often think of the old saying about putting your own gas mask on first so that you are then able to help others. I am sure this is true when caring for someone with dementia. Whether your gas mask is a solo walk in the rain, an outburst of temper or weeping, or sharing your angst here on Talking Point is irrelevant, we have to let off steam before we burst. One of the few saving graces of Dementia is that all is quickly forgotten by the PWD. While the Carer is agonising over something unkind they have said or done, it has gone from their loved one's memory in a flash[/QUOTE]
 
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Dutchman

Registered User
May 26, 2017
817
Devon
Thank you both for your timely comments and the energy you have given to supporting me. That, of course goes to everyone else.

Acceptance, that for me is the key. To accept my and Bridget’s situation and then be gentle with my emotions would be a great thing. I believe now that whatever i do to get through the day is ok. I mean, after all, as you‘re pointing out, what has happened to us carers is probably the biggest thing in our lives and we can become devastated by it.

Thanks once again and i send out my love to you all

Peter
 

Dutchman

Registered User
May 26, 2017
817
Devon
Not that there’s any chance of this happening but Bridget was always the passenger in our car and pre Covid we went for a drive from the home to a local garden centre.
This may sound silly but for her to get into our car, get strapped in, sit next to me, drive off would be almost like nothing has happened, just another day out. The transition from like she is now to just getting in the car would be immense, a reminder of what was the ordinary over the way dementia has changed our lives and the way she is in the home.

I think of things like this all the time and it can knock me sideways. We crave normality, and although it can never be, things to be as they were.
 

Dutchman

Registered User
May 26, 2017
817
Devon
I suppose this is the natural way of things as I’m now finding a settling in of what will be will be. I can’t keep fighting all the upset of the loneliness, the vacancy of Bridget’s look when she sees me, the memory flashbacks that give me guilt and what ifs, and the hole in my life where I now do what we did together on my own. It’s so exhausting and I’m inclined to give myself a break more often.

Today I’m seeing Bridget, which always upsets me, but I feel I ought to go and there’s a slot booked for tomorrow. Someone once said that there are no ought’s or should’s in this dementia world but my feelings take over and I feel that responsibility to care even if it’s extremely limited.
God bless
Peter