• All threads and posts regarding Coronavirus COVID-19 can be found in our area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Dementia’s journey

Dutchman

Registered User
May 26, 2017
1,827
0
74
Devon, Totnes
“Not everyone is like you dad” I understand that and wouldn’t have expected my husbands daughters to have done personal care in that way because I know he would have been mortified at the idea.
However in his last two weeks , when the carers were not here, myself and my sister and brother in law did wash and change him and everything else he needed.
Bottom wiping seems to come naturally when you truly love someone as you do Bridget.
Try not to think too badly of others. The love that you have and I had for my lovely husband is very special.
I read all your posts and I really wish for you to find peace with your situation.
It really is the only way to cope with life. And yes I agree about the weekends.
My husband died only 10 days ago and I have just had the worse weekend of my life but today I’m a lot better and coping with things again.xx
I’m so sorry that you’ve lost your husband @CAL Y. I cannot begin to imagine what heartache you’re going through.
❤️Peter
 

CAL Y

Registered User
Jul 17, 2021
363
0
I’m so sorry that you’ve lost your husband @CAL Y. I cannot begin to imagine what heartache you’re going through.
❤️Peter
Thank you Peter. Obviously, I am absolutely devastated at the loss of the man who has been my life for the last 30 years but in some ways it was a blessing that he was diagnosed with cancer about 6 weeks ago and the end came very quickly and i was able to care for him at home whilst he still knew who I was.
Also, there were some lucid moments when he knew that he was dying and we were able to say our goodbyes.
Under the circumstances, I consider it very fortunate that he and myself didn’t have to suffer in the way that you and all the others on this forum are still suffering.
I send you my good wishes and hope that you find the strength to come to terms with your ongoing journey with your beloved Bridget.
Take care.xx
Carole.💕
 

Dutchman

Registered User
May 26, 2017
1,827
0
74
Devon, Totnes
Hello Carole @CAL Y . On occasion I ask myself if it would be better if Bridget slipped away peacefully. Sure she’s looked after and seems to be happy but dementia has changed her from a dynamic articulate woman, capable of so much, to a shadow of her former self.

Is that so heartless of me ? I don’t know. I want this and then I don’t want to loss her as I suspect I’d be inconsolable and devastated. Can’t win.
 

canary

Registered User
Feb 25, 2014
18,897
0
South coast
Is that so heartless of me ? I don’t know. I want this and then I don’t want to loss her as I suspect I’d be inconsolable and devastated. Can’t win.
No thats not heartless, I think we all feel like that at times
As carers of someone with dementia we are pulled both ways - we want them to pass away and end their (and our) suffering, but we also dont want to lose them.
 

kindred

Registered User
Apr 8, 2018
2,843
0
No thats not heartless, I think we all feel like that at times
As carers of someone with dementia we are pulled both ways - we want them to pass away and end their (and our) suffering, but we also dont want to lose them.
I have been Keith’s carer and now I have lost him. Both are agonising but it is a different journey, only made bearable by friends family and forums like this.
 

Dutchman

Registered User
May 26, 2017
1,827
0
74
Devon, Totnes
What would I do without this Forum?

Here I can say what I really think and feel. For over 4 year’s you’ve all been my companions on my Dementia journey. I don’t always get it right but then again that the nature of the dementia beast.

With my posts I hope I’ve been able to just express feelings we all have at one time or other. I suspect I’ve a long way to go yet as each day throws up fresh and not so fresh emotions.
 

Picture

Registered User
Nov 14, 2021
24
0
I don’t think anyone who hasn’t been through it gets it. Not really. People can feel empathy, but it’s not the same as someone else knowing exactly what you mean. I always gel quickly with people who’ve been carers for a relative with dementia. It’s a club no one wants to join, but builds such strong bonds.
 

Picture

Registered User
Nov 14, 2021
24
0
@Dutchman i agree it’s good to have an outlet for those thoughts and feelings. I’m just sorry you have to have them at all. I hope you’ve had a better day today
 

Dutchman

Registered User
May 26, 2017
1,827
0
74
Devon, Totnes
Well, this hasn’t happened for a long time - lying awake in the early hours of the morning thinking about Bridget. And crying.

I went to see her yesterday at tea time and because it was just me and her in the sun room I opened my heart to her. I know she doesn’t understand or remember very little but, after all, she was my closest person and we talked about anything. So I talked and cried and questioned. But she just smiles and tries desperately to get the words out which won’t come out. The few words she’s has are relevant ( not meaningless sentences like some residents). And I feel so sad for her struggling to communicate. Actually I don’t know which is worse - a strong vocabulary but rambling unrelatedly or very few words that mean something.

And then, in the midst of this, another resident comes up behind me, arm over my shoulder, wanting my undivided attention, asking random questions. I unfortunately snapped and told her to please go sit down. Unkind perhaps but at that moment I’d had enough.

So I’m thinking all this now of how much Bridget’s has lost and how much I’ve lost. Oh, and my Covid booster has made me ache all over.

So is it natural to unload to Bridget the way I did and maybe understood when I’ve been annoyed by another resident’s need to want my attention? ( she does it to everyone by the way)
 

kindred

Registered User
Apr 8, 2018
2,843
0
Well, this hasn’t happened for a long time - lying awake in the early hours of the morning thinking about Bridget. And crying.

I went to see her yesterday at tea time and because it was just me and her in the sun room I opened my heart to her. I know she doesn’t understand or remember very little but, after all, she was my closest person and we talked about anything. So I talked and cried and questioned. But she just smiles and tries desperately to get the words out which won’t come out. The few words she’s has are relevant ( not meaningless sentences like some residents). And I feel so sad for her struggling to communicate. Actually I don’t know which is worse - a strong vocabulary but rambling unrelatedly or very few words that mean something.

And then, in the midst of this, another resident comes up behind me, arm over my shoulder, wanting my undivided attention, asking random questions. I unfortunately snapped and told her to please go sit down. Unkind perhaps but at that moment I’d had enough.

So I’m thinking all this now of how much Bridget’s has lost and how much I’ve lost. Oh, and my Covid booster has made me ache all over.

So is it natural to unload to Bridget the way I did and maybe understood when I’ve been annoyed by another resident’s need to want my attention? ( she does it to everyone by the way)
Peter I so understand. I know and often our grief with the demands of other residents is just too much. Please don’t worry about that. the jab will make you feel pretty low for a while too. All thoughts and sympathy. With love Kindtrd
 

Picture

Registered User
Nov 14, 2021
24
0
I understand too. It’s not an easy environment at the home. My mum’s in a lovely home, but I always feel like things could ‘kick off’ at any time. have been so difficult to unburden yourself and feel so vulnerable then to be interrupted like that.
 

Dutchman

Registered User
May 26, 2017
1,827
0
74
Devon, Totnes
Thanks @kindred and @Picture. I’ve been watching the Ed Balls documentary about caring in the community ( iplayer) and we see a man looking after his wife at home who has dementia. I’ll never put her into care he says.

But this lady is compliant and if Bridget had been the same who knows, perhaps she too could have stayed at home for longer. This lady allows a wash, change of clothes being fed, no escaping the house. Just wait till that all changes!
 

Picture

Registered User
Nov 14, 2021
24
0
Yes we too promised mum she would never go in a home. The promise was genuine and served its purpose at the time, I think it brought mum some comfort. But it was an impossible promise to keep. You don’t know what you’re signing up for. It’s hard enough seeing our loved ones in this position without caring as well. The reality is I couldn’t have cared for mum at home. And she has better care now than I could ever have given her.
I never know whether to watch anything about dementia on the tv. Even the most gritty dramas or documentaries never capture the full horror. Why is that I wonder?
 

lollyc

Registered User
Sep 9, 2020
801
0
Thanks @kindred and @Picture. I’ve been watching the Ed Balls documentary about caring in the community ( iplayer) and we see a man looking after his wife at home who has dementia. I’ll never put her into care he says.

But this lady is compliant and if Bridget had been the same who knows, perhaps she too could have stayed at home for longer. This lady allows a wash, change of clothes being fed, no escaping the house. Just wait till that all changes!
The dementia road is strewn with broken promises - mostly the "I promise I'll never put you in a home".
We say these things, because at the time we really, honestly believe it; because we can't imagine a situation where that would ever happen to us:; and because we believe that our PWD will be different, not like those "others" .
But, the dementia tide continues to inexorably rise, and often we can no longer hold it back.
 

Dutchman

Registered User
May 26, 2017
1,827
0
74
Devon, Totnes
Hello everyone. It’s Saturday morning and I’ve no enthusiasm for the day. I’ll see Bridget later and I always dread going. I settle when I’m there but it’s the anticipation of the visit that makes me anxious.

Strange, but when we were together pre dementia, jobs around the house got done eventually. I suppose being together was more important and each other was our interest. Now I’ve decorated some rooms, shifted stuff, generally tidied but, I think it’s to keep busy. The sad thing is that it’s only for me and Bridget won’t enjoy our house anymore

I often imagine her coming back into the house, walking up the path, going into the kitchen, front room, sitting on her sofa and saying “ you’ve kept it nice, it’s so good to be home”. I’d fuss over her, make her a cup of tea, talk about the future, have her back to fill my empty life. I know this is just fantasy but 30 years of companionship and then nothing leaves a void that is impossible to fill.

Going to get up in a minute ( 9 o’clock) and face the day.
God bless you all, Peter
 

Bun

Registered User
Oct 2, 2021
57
0
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.
 

Bun

Registered User
Oct 2, 2021
57
0
It is 💓 breaking for u. I can relate and sympathies to your situation. My husband went into care 9months ago, after 38 years of marriage, and 12 years being his sole career, no support, ( it's a long story) it's not a easy journey being apart from your loved one. Bless you, take care of yourself.
 

Dutchman

Registered User
May 26, 2017
1,827
0
74
Devon, Totnes
Hello all. I’ll try to reach as many friends as I can @blackmortimer @kindred @Pusskins @Bun @lollyc @Picture @Grannie G @canary @CAL Y and those I’ve missed - sorry.

Whatever you’re going through today, by now I’ve some idea of your emotions and feelings and can only share in the grief and sadness you have.
I’ve realise now that no matter how much we reach out to others ( friends, counsellors, Samaritans, doctors, Forum friends even, family ) we are on our own once we close the house door and sit quietly on the sofa. But things would be a hundred times worse without all this help and I hope I have helped in a small way with whatever I’ve posted.

Yesterday I visited Bridget and sat with her over lunch and helped her feed. I always always get emotional when I tell her I love her and as I rested my head on her arm she lent forward and kissed me on my head. Like saying “there, it’s ok, I’m ok I love you too”. Of course I’m probably reading too much into this little show of affection but I grab at anything I can. My mind fools me into thinking I want more but, of course, it’s impossible and anyway I don’t want her to have lasting feelings and miss me when I’m not there. It’s an awful situation. You want and you don’t want.

It’s Sunday - a dreadful day for me as it has miserable memories of dementia behaviour. I’m off to church later and then a concert in the afternoon. I having an operation soon which means isolation ( covid) and I won’t be able to see Bridget for a week. Going to be tough 😩
Bless you all. Peter
 

Dutchman

Registered User
May 26, 2017
1,827
0
74
Devon, Totnes
Hello all. I’ll try to reach as many friends as I can @blackmortimer @kindred @Pusskins @Bun @lollyc @Picture @Grannie G @canary @CAL Y and those I’ve missed - sorry.

Whatever you’re going through today, by now I’ve some idea of your emotions and feelings and can only share in the grief and sadness you have.
I’ve realise now that no matter how much we reach out to others ( friends, counsellors, Samaritans, doctors, Forum friends even, family ) we are on our own once we close the house door and sit quietly on the sofa. But things would be a hundred times worse without all this help and I hope I have helped in a small way with whatever I’ve posted.

Yesterday I visited Bridget and sat with her over lunch and helped her feed. I always always get emotional when I tell her I love her and as I rested my head on her arm she lent forward and kissed me on my head. Like saying “there, it’s ok, I’m ok I love you too”. Of course I’m probably reading too much into this little show of affection but I grab at anything I can. My mind fools me into thinking I want more but, of course, it’s impossible and anyway I don’t want her to have lasting feelings and miss me when I’m not there. It’s an awful situation. You want and you don’t want.

It’s Sunday - a dreadful day for me as it has miserable memories of dementia behaviour. I’m off to church later and then a concert in the afternoon. I’m having an operation (hernia) soon ( after Christmas) which means isolation ( covid) and I won’t be able to see Bridget for a week. Going to be tough 😩
Bless you all.
 

Members online

Forum statistics

Threads
125,618
Messages
1,840,114
Members
76,560
Latest member
Aga Queen