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Dementia’s journey

canary

Registered User
Feb 25, 2014
12,616
South coast
Oh, Peter - you thought you had got Bridget back again, didnt you? You have yearned so much for it and dared to believe that she was back, only to have dementia spit in your face.
Treasure these moments when Bridget is back, even if its only for a few minutes.

PS - I have often found that saying "no" to my OH was like a red rag to a bull. Try saying "yes, we will go another day" (start the sentence with "yes" and dont specify which day) when it happens again.
 

Moggymad

Registered User
May 12, 2017
500
PS - I have often found that saying "no" to my OH was like a red rag to a bull. Try saying "yes, we will go another day" (start the sentence with "yes" and dont specify which day) when it happens again.[/QUOTE]

This does work. I remembered reading Canary's advice on this previously & so I tried it with my mum when she was yelling at the top of her voice about going home. I said yes ok I'll take you home but let's have our tea first. She stopped & looked at me like she was trying to work out if I had really said what she heard. After tea all was forgotten.
 

Dutchman

Registered User
May 26, 2017
674
Devon
Peter, I see this such a lot. When husbands, wives, children, take their loved ones out there is so often a transition time when goodbyes are about to be said and their beloved family member turns on them. Please believe me that this bad mood does not often last for long and staff are able to steer it to happier times. But of course I understand the effect on you. And as you say, the constant anxiety and stress. There is not always a shoulder to cry on, I experienced this for several years until Keith went into the nursing home where the staff were miracles of love and care for families as well as the residents.
Much strength to you in the job you have to do. It's one of the toughest in the world.
And as to avoiding love so not to get hurt, at the moment, I feel I would in the future. I could never go through all that again
warmest,
Geraldin


Geraldine thanks so much for your considerate reply. I was told last night that you’re unhappy because you tried to do a nice thing that had unhappy consequences. How true.
I’m not visiting today and giving Bridget a chance to restore her calmness if possible.

the staff are very understanding and kind so I’m lucky in that respect.

my mind is a mess because she acted fairly normally at the cafe (no dementia type activity) and I’m confused. No one gets better with dementia so of course I’m pleased she was a bit like my old Bridget and then it reverts back to dementia anxiety back at the home. No wonder I get so upset. You’re replies are such a comfort to me. Peterxx
 

Dutchman

Registered User
May 26, 2017
674
Devon
Peter, I see this such a lot. When husbands, wives, children, take their loved ones out there is so often a transition time when goodbyes are about to be said and their beloved family member turns on them. Please believe me that this bad mood does not often last for long and staff are able to steer it to happier times. But of course I understand the effect on you. And as you say, the constant anxiety and stress. There is not always a shoulder to cry on, I experienced this for several years until Keith went into the nursing home where the staff were miracles of love and care for families as well as the residents.
Much strength to you in the job you have to do. It's one of the toughest in the world.
And as to avoiding love so not to get hurt, at the moment, I feel I would in the future. I could never go through all that again
warmest, Geraldine

I didn’t go to the home yesterday. I just can’t shift the feeling that Bridget is locked away in the home and maybe depressed because she wants to get outside. My attempt to do a nice thing taking her to the cafe rebounded on me and I’m still upset about that.
If only I could come to terms with this awful situation and settle my mind on Bridget being looked after better than I ever could. I also worry( I’m a worrier) that because Bridget isn’t seeing me as much lm losing her. Bless you all in this dementia crazy world
 

kindred

Registered User
Apr 8, 2018
2,428
I didn’t go to the home yesterday. I just can’t shift the feeling that Bridget is locked away in the home and maybe depressed because she wants to get outside. My attempt to do a nice thing taking her to the cafe rebounded on me and I’m still upset about that.
If only I could come to terms with this awful situation and settle my mind on Bridget being looked after better than I ever could. I also worry( I’m a worrier) that because Bridget isn’t seeing me as much lm losing her. Bless you all in this dementia crazy world
I know, I think it's all but impossible to settle our minds in this situation. Your love and care for beloved Bridget shines through, Peter, and she must have had a brilliant married life with you. Anything we settle on feels like some sort of pale compensation. I have never known anything as hard as this either. with warmest wishes, Geraldinex
 

Dutchman

Registered User
May 26, 2017
674
Devon
I know, I think it's all but impossible to settle our minds in this situation. Your love and care for beloved Bridget shines through, Peter, and she must have had a brilliant married life with you. Anything we settle on feels like some sort of pale compensation. I have never known anything as hard as this either. with warmest wishes, Geraldinex
Went to the home tonight but she refused to let me change her into Pj’s so I didn’t stay that long. I’ll go again tomorrow and try again.

Wouldn’t it be good to wake one morning and accept the situation, never blame yourself, be content that she’s well looked after and for one precious moment be happier. It’s only really this time of night that I’m more settled because it’s the end of another day and I know we’re both nearly going to bed and she can sleep and I really hope and pray that she can escape her dementia for a short while.
 

Lirene

Registered User
Sep 15, 2019
184
Bless you, I just wish I could flick a switch and my mind and thoughts would be turned off. Prayers xx
 

Dutchman

Registered User
May 26, 2017
674
Devon
Bless you, I just wish I could flick a switch and my mind and thoughts would be turned off. Prayers xx
I’ve never really had that to do with religion although I skirted around Buddhism for a while. Thing is, my local free church have taken me in unconditionally as a community member of my town (Totnes) and I have their support and understanding for as long as I want it.

It certainly takes the edge off of coming back to an empty house but it can’t replace my Bridget’s company. Funny thing is that when she was at home towards the end she wasn’t any company at all. This situation really does mess with your emotions.
 

Dutchman

Registered User
May 26, 2017
674
Devon
I’ve never really had that to do with religion although I skirted around Buddhism for a while. Thing is, my local free church have taken me in unconditionally as a community member of my town (Totnes) and I have their support and understanding for as long as I want it.

It certainly takes the edge off of coming back to an empty house but it can’t replace my Bridget’s company. Funny thing is that when she was at home towards the end she wasn’t any company at all. This situation really does mess with your emotions.
why do I do this to myself? Thought I’d cheer myself up by going for a pub meal. Full of Christmas cheer so I’m finishing and finding some quiet time.
Everyone I talk to ( a dementia nurse this morning) says the emotions I’m going through are normal ( be strange if you didn’t) and placing Bridget in the home was correct for both our sakes. If only I could be truly convinced and not constantly judge myself as selfish and self centred.
I made the decision on my own to take her from the house to the care home and I constantly question my motives. Could have done more, was it just for my own benefit? I live now in a house full of our decisions even down to the colour of the carpet, a carpet she’ll never walk on again.

does the loneliness and heartbreak never end? I’m still in bed at 11.00 this morning seeing no point to the day.

sorry to go on a bit but I had to get my feelings out there to those who really understand and have the same feelings

bless you all, Peter
 

Dutchman

Registered User
May 26, 2017
674
Devon
I know, I think it's all but impossible to settle our minds in this situation. Your love and care for beloved Bridget shines through, Peter, and she must have had a brilliant married life with you. Anything we settle on feels like some sort of pale compensation. I have never known anything as hard as this either. with warmest wishes, Geraldinex
I know, I think it's all but impossible to settle our minds in this situation. Your love and care for beloved Bridget shines through, Peter, and she must have had a brilliant married life with you. Anything we settle on feels like some sort of pale compensation. I have never known anything as hard as this either. with warmest wishes, Geraldinex
 

Dutchman

Registered User
May 26, 2017
674
Devon
Oh Geraldine, how well you know this awful journey we’re on. I do find comfort in posting and I wish I could do more in helping others in their agony over the dementia situation. I’m constantly reminded that it’s not long since Bridget went in and don’t agonise over it too much.

bless you for your constant support. Peter
 

Pete1

Registered User
Jul 16, 2019
768
I made the decision on my own to take her from the house to the care home and I constantly question my motives. Could have done more, was it just for my own benefit?
Hi @Dutchman, I am so sorry that you still find yourself in the wilderness, you didn't make the decision lightly and from what I can read from your posts it was done out of love for your wife, it wouldn't have been possible for you to manage safely with her increasing needs. I know nothing can change the way you feel inside, and it is heartbreaking for us to think of the life we once have with the our loved one before their inevitable decline, but you have to somehow think of those as cherished memories and not with melancholy and sadness - that may seem impossible at the moment but over time that can happen. Xmas can be a very difficult time where you can feel as though you are on the outside looking in, please try and stay strong and do what you feel able not what you think you should. All the best, take care of yourself.
 

kindred

Registered User
Apr 8, 2018
2,428
Oh Geraldine, how well you know this awful journey we’re on. I do find comfort in posting and I wish I could do more in helping others in their agony over the dementia situation. I’m constantly reminded that it’s not long since Bridget went in and don’t agonise over it too much.

bless you for your constant support. Peter
Peter, it weighs so heavily on you that you took the decision and you took Bridget into the home. It would weigh a tiny bit less if someone had been with you to make that decision. You had to do the toughest thing in the world on your own. That is too hard for any of us and it is bound to weigh on you, make you wonder whether it was the right thing. I believe it was, most certainly. You could not have gone on as things were. I used to wonder if I could bring Keith home, with nursing care, so he could die in the home he loved. But I didn't do it, I knew it was beyond my powers.
Decisions in this dementia business are just awful and we can feel we are inhumane. You are the most humane of people, tested beyond it. It is bound to mess with your mind and emotions.
warmest, Geraldinex
 

Philbo

Registered User
Feb 28, 2017
821
Kent
Hi again @Dutchman

Our paths are very similar, though different.

My lovely wife has been in a nursing home since the end of September. She is only 69 (next month) and our journey has taken 6+ years so far (sorry if you read my posts previously - job to keep a tally).

Although I thought it had been tough getting this far and that no longer having to physically care for her any longer would be something of a relief (which in many ways, it is), I am missing her dreadfully.

Leaving her there and then coming home to the house is awful. If I doze off in the evening watching TV (the red wine helps), for a split second when I wake, I think she is still here! Silly things on the TV make me tearful and I miss having someone to chat to (even though she lost this ability a long time ago).

As you may have read, I proactively built a social "safety blanket" at the start of our journey, mainly centred around a lovely local pub.:D The friends we made there have been marvellous and are now there for me. BUT:rolleyes: - it's hard being there by myself now, largely amongst couples. Then of course, we all go home...............

It is brilliant that you are finding some solace with the church group - small steps but you will get there. The good folk on TP are here to support you too.

Kind regards
Phil
 

northumbrian_k

Registered User
Mar 2, 2017
1,018
Newcastle
If one is human then these doubts, thoughts and moments of anguish will continue to appear. 7 months on from my wife's admission to residential care I feel that I have got my life on track - with the help of friends from the cycling and greyhound communities and some close family members - but I can still have moments of unexpected emotion. It can be as simple as telling my dog that I love him or seeing or hearing something that I can no longer discuss with my wife. As for her, she is more settled now that her medication has been tweaked but seems to fall asleep when I visit. One of the staff said today that this is perhaps because my wife derives comfort from me being there. It was nice of her to say that and is something to cling on to. She is safe, well looked after and appears to be almost content. I have done my best for her but that doesn't mean I don't wonder if I acted too quickly as we face our first Christmas apart.
 

Lirene

Registered User
Sep 15, 2019
184
Christmas, birth of Christ, season of cheer, ‘goodwill to all men’ etc,. although not a happy time for everyone and my heart goes out to you Peter. I have come to realise this is our hell - on earth and we can only do our best to try and cope with each situation that befalls us.
As we try to cope, as hard as it is, the Lord carries us and, I believe, helps in giving us the inner strength to get through a minute an hour, a day at a time. If inner strength was not given everyone would just give up and no one would be there at their loved ones hour of need. As much as you don’t think you are, you are being given that inner strength to carry on each day because you know in your heart Bridget needs you. You have to be there Peter, loving, caring and sharing your thoughts and feelings with Bridget who you will love forever. Hell may never be over but in time it will ease and you will learn to live with it. I hope you can find relative calm and peace from your Church community to give your mind and body chance to heal itself. Prayers xx
 

Dutchman

Registered User
May 26, 2017
674
Devon
I’ve just left the home and got back to our house.

I’m a mess. As soon as I went into the home they me told she wasn’t well, very weak because she’s just not eating. I tried her with some banana and biscuits but she just wouldn’t open her mouth and kept drifting off to sleep. No amount of talk from me made a difference.

I’m so afraid that if carry’s on then we’re getting near the end and I pleaded with her ‘please don’t leave me, I love you so much’. But none of this she understands. I really don’t know what else to do and if I had the courage I’d end it all because she wouldn’t understand that either, only my daughter would miss me and she has her husband to comfort her.

This is the price I’m paying because when she was here at home I was selfish, just thinking of myself, getting angry, intolerant, wanting the dementia behaviour to stop.

My constant thought is that I caused all this and if I’d made more effort at home she would have been happier, not stuck in this old people’s home which I really believe she is so unhappy in that she’s refusing food to quicken her end. I couldn’t even stay at the home 30 minutes while she was like this, it’s too upsetting. And there I go again, being selfish and not considerate enough to stay longer.

I’m not sure where I go from here. I’m in a dark room crying for the hopelessness of it all.

Bless you all for reading my unhappiness.
Peter
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,525
Nottinghamshire
Could you let your daughter know how low you feel? Maybe she can help you to cope with these darkest days. I know I would've wanted to help my dad in anyway I could and if she can get you through the difficult Xmas period it will be another battle won.

I found it difficult, as a daughter, to know what to do for the best and I'm sure I sometimes offered the wrong platitudes. It's no one's fault that your poor wife is so ill. You can only do your best. I doubt she is refusing food on purpose because she's in the home.
 

Grahamstown

Registered User
Jan 12, 2018
1,683
80
East of England
One thing you said @Dutchman about your wife not eating because of unhappiness and to hasten her end I believe is absolutely incorrect. My husband is much the same as your wife, he is gradually starving himself to death and reluctant to eat and has now shrunk to 15 kgs less than he was only 18 months ago. I tried m to tell him that he was losing too much weight, starving, and he said oh dear I must eat more but he can no more do that than fly. He doesn’t know what he is doing to himself and I truly believe that neither does your wife. He is at home still and I can’t get him to eat anything much at all. In fact the dietician has told me to stop worrying about it because it’s the disease and so has the doctor. Such knowing behaviour is simply beyond a person with this disease. This is no consolation in your grief but I don’t think that her starving is voluntary and that is one charge against yourself that you can dismiss. The rest of your dreadful feelings are entirely understandable. I have had some dark times too as I have to watch my dearest man in this state, sleeping all the time, weaker and weaker and fading away. But we have to keep going for them whether at home or care home. My best to you in your struggles.