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Dementia’s journey

jenniferjean

Registered User
Apr 2, 2016
760
Basingstoke, Hampshire
Feeling better creeps up on you,small things rather than anything dramatic.My life will never be the same but this is where I am.
This is so true @Dutchman, what @notsogooddtr says. I lost my only son to cancer three years ago and I've never know pain and loss like it. It's true, my life will never be the same. You say you want to feel different NOW, but it won't happen. You know you wouldn't be able to cope, you admit it. So she's in the best place and you need to leave it to the experts to get her to cope with where she is. Stop hurting yourself.
 

notsogooddtr

Registered User
Jul 2, 2011
942
This is so true @Dutchman, what @notsogooddtr says. I lost my only son to cancer three years ago and I've never know pain and loss like it. It's true, my life will never be the same. You say you want to feel different NOW, but it won't happen. You know you wouldn't be able to cope, you admit it. So she's in the best place and you need to leave it to the experts to get her to cope with where she is. Stop hurting yourself.[/QUOTE
This is so true @Dutchman, what @notsogooddtr says. I lost my only son to cancer three years ago and I've never know pain and loss like it. It's true, my life will never be the same. You say you want to feel different NOW, but it won't happen. You know you wouldn't be able to cope, you admit it. So she's in the best place and you need to leave it to the experts to get her to cope with where she is. Stop hurting yourself.
Much sympathy jenniferjean
 

LadyA

Registered User
Oct 19, 2009
13,631
Ireland
Ah, @Dutchman , I do feel for you. When caring for our loved ones has been all we did, for so many years, it's so very hard to hand over control of their care to others. It can leave us, not only bereft, but also feeling like we've lost our raison d'etre. During our caring years, all other interests and considerations have gradually had to be put aside, as dementia devours not just our loved one, but a large chunk of our lives too.

Coming out of that feeling of loss and grief is never going to be quick or easy. Four years on from my husband's death (and five years on from when he had to move to full time care), there are still times when that feeling of being bereft, of losing everything, still hits. But, not as often. I'm still inclined to be solitary, and not good at group socialising, or idle chit chat. But slowly, life has turned good again. I'll always miss my husband, of course. But other things have moved in to try and fill the void, and I've actively let them in. Family, a close friend or two.

I know it sounds easy to say it. But things won't always be so raw. Really, truly, they won't.
 

Dutchman

Registered User
May 26, 2017
781
Devon
Ah, @Dutchman , I do feel for you. When caring for our loved ones has been all we did, for so many years, it's so very hard to hand over control of their care to others. It can leave us, not only bereft, but also feeling like we've lost our raison d'etre. During our caring years, all other interests and considerations have gradually had to be put aside, as dementia devours not just our loved one, but a large chunk of our lives too.

Coming out of that feeling of loss and grief is never going to be quick or easy. Four years on from my husband's death (and five years on from when he had to move to full time care), there are still times when that feeling of being bereft, of losing everything, still hits. But, not as often. I'm still inclined to be solitary, and not good at group socialising, or idle chit chat. But slowly, life has turned good again. I'll always miss my husband, of course. But other things have moved in to try and fill the void, and I've actively let them in. Family, a close friend or two.

I know it sounds easy to say it. But things won't always be so raw. Really, truly, they won't.
I do hope you’re right because right now, being on my own, my wife being cared for and not able to comfort me, I find myself in the most miserable place in my whole life. I hold on to that promise that things will eventually get better otherwise nervous breakdown here we come.

I cry and cry to the room that I want my wife back to comfort me but of course it’s a fantasy. My wife hasn’t been able to comfort me for a long time. Dementia stopped all that. So I’m told my job now is to look after myself but I have little inclination to do that. So I’m loosing weight (no appetite), no interests apart from the odd book and no interest in our house either.

The only bright spot today was a visit to our local United Free church ( I’m not a Christian and it was suggested by a friend) and it was packed with happy family people and the music was joyful. The only thing that spoilt it for me was that a couple were renewing their vows and it was too much to see a happy couple, very in love, when I’ve lost my love. ( i know, I’m that miserable) I left but returned later for a cup of tea.
 

jugglingmum

Registered User
Jan 5, 2014
5,871
Chester
The only bright spot today was a visit to our local United Free church ( I’m not a Christian and it was suggested by a friend) and it was packed with happy family people and the music was joyful. The only thing that spoilt it for me was that a couple were renewing their vows and it was too much to see a happy couple, very in love, when I’ve lost my love. ( i know, I’m that miserable) I left but returned later for a cup of tea.

I'm so glad you did this.

I think all of us have difficulty with different things, so nothing wrong with going outside whilst the vows were renewed. We all have things that touch us and upset us. It is part of being human.

Hopefully you've now found something to do on a Sunday, and maybe now think of something to do on one another day as a regular thing.

If you read could you go to the library, just to get out of the house and a change of scene, it'll help distract your brain for a bit and slowly your brain will learn this pattern if that makes sense.
 

Dutchman

Registered User
May 26, 2017
781
Devon
I saw my wife at the home this morning. She was looking extremely tired and withdrawn but with enough energy to wander and try the doors to escape. I don’t think I’m ever going to lose the feeling that she wants to come back here so the guilt and all the emotions remain.

Tried to figure out from her where her idea of home is but she couldn’t describe it. I have to believe it’s not back here because that would be even more upsetting.

She appears as if a light has gone out in her personality and it’s very sad to see her so humbled. I didn’t stay long so I’m going back tomorrow. Had a funny turn this morning, couldn’t stop fidgeting and moving about and got myself to the doctor who has given me beta blockers to slow me down. Never thought I’d need to take this many pills.
 

Philbo

Registered User
Feb 28, 2017
834
Kent
Hi @Dutchman

I am so sorry that you are feeling so low and I share many of your emotions, having moved my wife into a nursing home just a week ago.

Our journey is different in many aspects, as caring for her at home these last 6 years has been helped by the fact that for most of this time, she has been in her own happy little world. Sure, I have been through the whole gambit of issues and suffered a roller-coaster of emotions along the way.

It all sadly came to a head at the beginning of August, when she took a turn for the worst near the end of a 2 week respite stay (whilst I holidayed with the kids and grandchildren). She was hospitalised with a UTI for a week, which seemed to knock the dementia on alarmingly and has become virtually immobile.

She was then assessed as requiring permanent residential care in a nursing home, which is where she has been since last Wednesday. I don't have the issue you are faced with, as my wife seems to be happy and is easy for the staff to deal with.

What I do empathise with is the feeling that I have somehow abandoned her (though I know I haven't) and that terrible awful feeling of sadness and emptiness, leaving her after a visit and getting back to an empty house.

I was able to develop a sort of support network in the early stages of our journey, by adopting a local pub. I have never been a big drinker and my wife was never that keen on pubs but as her awareness declined, I was able to get her to start going to one in our town. The friends we made there have been great, right up to just before she went in for respite. They are now proving invaluable in helping me cope (sort of) during this difficult time.

Of course, this may not be your cup of tea (or glass of beer:rolleyes:) but I would urge you to find something to provide some kind of physical or emotional support? Something like Men In Sheds (search online for Men in sheds) may be something to consider or anything else that involves getting back out there socialising to whatever extent you feel able to do. I have struggled this last week to motivate myself to get out but personally, I have found that it helps.

Keep your chin up and keep posting.
Kind regards
Phil
 

Beanie01

Registered User
Dec 4, 2017
18
Hello @Dutchman , I have to admit I’m a little worried about you and I’m glad you can use this forum as a source of support. As well as the pills, your GP should be able to give you contact details of free counselling in your area, there may be a waiting time, but there may also be free courses you can book yourself on like dealing with stress or introduction to cognitive behavioural therapies. It would depend on your NHS area. There is a helpline for men who are struggling with things (not specifically dementia caring, but specifically for men) called calm (campaign against living miserably) and they are open from 5pm until midnight every day. It may also be worth speaking to the admiral nurse helpline to see if they have any tips for helping you feel more positive after your visits with your wife. I truly hope you start to feel better soon. Sending hugs x
 

katydid

Registered User
Oct 23, 2018
58
I was so looking forward to seeing my wife at the home and now it’s done I’m consumed by fresh emotions. To actually be there today, to be where potentially this could be the rest of her life fills me with dread. I know they take great care of her but our home is here filled with all the memories and she’s now stuck in one room. Me here, my wife there. So again my imaginings of feeling better when I saw my wife again turn out to be so wrong in reality. I am so tired by all this.

My husband entered a Nursing Home at a crisis point when I badly hurt my already damaged back.
It was impossible for me to care for him any longer, really before I hurt myself. I am a nurse, and I have never given up on a patient in 40 years of caring.
Why can’t I do it now? Oh I know, I am 71, he is heavy, and completely non comprehending at times, immobile incontinent etc.
I really understand the feelings in this thread, my husband there, me here, what is that supposed to be?
He doesn’t communicate very well so he is as alone as I am.Thoughts of bringing him Home continue to come
If I bought a lift ? If I move to a bungalow? All things that I know will not make it possible or right for either of us. This disease has stolen both our lives I am angry
 

Dutchman

Registered User
May 26, 2017
781
Devon
My husband entered a Nursing Home at a crisis point when I badly hurt my already damaged back.
It was impossible for me to care for him any longer, really before I hurt myself. I am a nurse, and I have never given up on a patient in 40 years of caring.
Why can’t I do it now? Oh I know, I am 71, he is heavy, and completely non comprehending at times, immobile incontinent etc.
I really understand the feelings in this thread, my husband there, me here, what is that supposed to be?
He doesn’t communicate very well so he is as alone as I am.Thoughts of bringing him Home continue to come
If I bought a lift ? If I move to a bungalow? All things that I know will not make it possible or right for either of us. This disease has stolen both our lives I am angry
I fight with this question all the time. If I brought her home, if if if if? She looked quite well today but completely just in the moment and anxious. Like yours she doesn’t communicate well but often say I want to go home but I don’t think it’s our house. I really really hope not. Anyway it’s a dangerous chance I’d be taking if I couldn’t cope at home ...what then? Believe me the temptation is unbelievably strong. But i rely on the thought that the home staff are keeping her clean, she eats well and sleeps well, it’s me who suffering more with loneliness
 

kindred

Registered User
Apr 8, 2018
2,495
I fight with this question all the time. If I brought her home, if if if if? She looked quite well today but completely just in the moment and anxious. Like yours she doesn’t communicate well but often say I want to go home but I don’t think it’s our house. I really really hope not. Anyway it’s a dangerous chance I’d be taking if I couldn’t cope at home ...what then? Believe me the temptation is unbelievably strong. But i rely on the thought that the home staff are keeping her clean, she eats well and sleeps well, it’s me who suffering more with loneliness
I know, I really do but as you say it is you, suffering more with loneliness. I got through this partly by establishing a fairly rigid framework, visit the home, come home and post, read the newspaper for a hour etc. It helped me to feel not so adrift. All my sympathy, you don't really have a mind that is free enough to address the loneliness, but a framework might help.
Warmest wishes, Kindred
 

Dutchman

Registered User
May 26, 2017
781
Devon
I know, I really do but as you say it is you, suffering more with loneliness. I got through this partly by establishing a fairly rigid framework, visit the home, come home and post, read the newspaper for a hour etc. It helped me to feel not so adrift. All my sympathy, you don't really have a mind that is free enough to address the loneliness, but a framework might help.
Warmest wishes, Kindred
You’re right that a framework would help. Tomorrow night I’m going out but the day is empty. Doctor in the morning for a renewal of sleeping pills. I tried last night to go without but I just lay awake and gave up. I might prune some bushes back as I’ve neglected the garden over the past weeks.

The thing is that when my wife was here with her dementia I did nothing anyway, just had her around, just sitting there. It’s the physical presence of her I miss and the job of carer. At the time I didn’t want it, couldn’t wait to get rid of it. Now the house hasn’t got a couple just me.
 

Dutchman

Registered User
May 26, 2017
781
Devon
I feel for you @Dutchman.

I`ve been in something similar to your situation. We are all individuals and this form of separation affects each of us in a different way.

All I can say is there is no way out.

Our families may be one step removed from our spouses but they are grieving too and the decline of both parents instead of one could be the biggest tragedy of all.
I’m looking at yet another film to fill up the evening because I can’t go to bed at 7.30, well I could but that’s a long time till I pop the sleeping tablets which wake my at 4.30 in the morning.

I feel as if I’m constantly having a moan on the forum about my miserable position here on my own. But I’m not brave, have little in the way of mental resources to face this and at times feel so bad that it really frightens me. And it’s a vicious circle because the fright disables you and stops any motivation to do something about the loneliness. I just see the future stretching on into a lonely void. I can’t see it any other way.

Sorry, I’m voicing my thoughts. It’s one way I can release the tension and you all understand and that helps.
 

Dutchman

Registered User
May 26, 2017
781
Devon
Damn it, I’ve got the horrible pains in my arms again brought on by stress. I looked at a picture of my wife I took this morning in the home and it’s upset me. Her look so vacant and unhappy. What’s wrong with me? I knew it would upset me and I still looked at the picture.

I’m hoping the Prozac will kick in sooner rather than later (2 weeks now) but when it does I wonder what I will feel like? I’m so down at the moment that the only direction has to be up.
 

Dutchman

Registered User
May 26, 2017
781
Devon
I just come off the phone to an organisation called CALM campaign against living miserably. No help, just referred me to Silverline and didn’t empathise with my feeling at all. Don’t expect much from them!!
 

Marnie63

Registered User
Dec 26, 2015
1,631
Hampshire
Just saw your post. Would it help to give The Samaritans a call right now, just for someone to offload to? I called them during one of my darker moments when looking after my mum. They didn't solve my problems, but it really helped just to pick up the phone and talk at someone.
 

Wifenotcarer

Registered User
Mar 11, 2018
313
Central Scotland
Just saw your post. Would it help to give The Samaritans a call right now, just for someone to offload to? I called them during one of my darker moments when looking after my mum. They didn't solve my problems, but it really helped just to pick up the phone and talk at someone.
I too phoned the Samaritans when I was at my wits end. Spoke for ages to a man with a lovely calm and soothing voice. He offered no solutions nor advice of the "you should just...." variety, just the reassurance that there was someone there willing to listen for as long as or as often as I needed to talk. I found the experience very calming and it helped me to sort out my own thoughts and priorities.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,827
Kent
Yes please phone the Samaritas @Dutchman, whenever you need. Its what they're there for.

They can`t solve your problems but they do listen. I was told they can also offer local help and even home visits if necessary so please ask about this if you do phone the.

Phone 116 123
 

Dutchman

Registered User
May 26, 2017
781
Devon
Went to the doctor today and he’s going arrange an ECG for me and a blood test. Just to make sure I suppose. I phoned the Samaritans and unloaded a bit but everyone just keeps saying it’s still early days. You’ve got to give yourself time to adjust. All well and good but every day is such a struggle to get through.

Been for a walk and I got hit by the guilt monster again. In her last days here my wife wanted to desperately leave the house. I’m thinking that I somehow forced her away by not doing what she wanted like going to bed at 16.00 with her, by being in the same bedroom even if she was still in all her clothes and hadn’t washed for weeks, just indulging her behaviour more and being more supportive and kind.

I just nagged her and criticised her and asked her all the time to have a wash, to changed her clothes, wash hair. She just neglected herself and it was too much for me to cope with. Even if I’d been super supportive I’m told something would have happened eventually to decide on a care home.

It’s too late now of course. I’ll never know now one way or the other. An Admiral Nurse suggested that given time and when I have more confidence I might try bringing her back here to the house from the home for an hour or so. Really!!

Suppose I did and this is what she wanted all along and I couldn’t get her back in the car and she gets really upset and it destroys all the work the home has done. I’d collapse with the stress of it all. It’s bad enough now trying to keep my emotions in check.
I just so tired all the time. Spent 20 mins pruning and I’m out of breath.
 
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northumbrian_k

Registered User
Mar 2, 2017
1,041
Newcastle
"An Admiral Nurse suggested that given time and when I have more confidence I might try bringing her back here to the house from the home for an hour or so"

Well that is spectacularly bad advice @Dutchman. Imagine if you did, it would redouble the feelings that you have now and would just undo any progress that might have been made in ensuring that she is not only well looked after but beginning to settle. Don't say that you are not brave. To have got this far you must be. You are having a very difficult time but as the days pass you will find that you focus less on the negatives and begin to develop a role and life for yourself. It will still involve being a carer but it may also give you time for some pleasure too.