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Dementia’s journey

Old Flopsy

Registered User
Sep 12, 2019
167
0
@Dutchman oh you were not 'failing to look after her'- you, together with the carer, were unable to achieve the impossible.

Be kind to yourself.. The dementia stopped her complying with your requests to co-operate. It wasn't you. It wasn't Bridget. It was this dratted disease.

I am thinking about you.
 

Dutchman

Registered User
May 26, 2017
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73
Devon
Dear @Old Flopsy. Dementia really does turn our world upside down. Now that Bridget has been in the home for 19 months the staff have become her family. I spoke to one particular member of staff today; Bridget’s and one of my favourite carers; and she said Bridget won’t let go of my hand, we love Bridget . I mean, if it wasn’t for the fact that she’s there and I’m here, then I’d be satisfied. But I’m jealous. Pathetic isn’t it.
 

Old Flopsy

Registered User
Sep 12, 2019
167
0
Hi @Dutchman

Perfectly understandable - I would be too!

I hope my OH finds such peace- in fact I can't wait for him to be settled in a care home.

I am just dreading the two weeks isolation he has to do- he just won't understand the reason- covid is beyond him now.

Oh so many worries.
 

update2020

New member
Jan 2, 2020
1
0
Hi Dutchman and Old Flopsy. I used to post on here regularly under another name - but I had all my posts deleted when things got too much. Short version: I cared for my husband for around 12 years at home as he slowly developed early onset dementia. He finally moved into residential care around 21 months ago and has had a tough time being sectioned and treated with antipsychotics. It's been - and is - a very very rough ride. On top of that I've been unable to visit him over the last year until just a couple of weeks ago because of Covid. He is just 64. So I totally understand your mixed feelings. I would still - even now - much rather be with my husband than without him. But he is just so very ill, and it takes a team of exceptionally wonderful people 24/7 to care for him. No individual could do this on their own. It becomes physically impossible, let alone mentally, after a while. The hard thing is knowing when is the right time to make the change and that is when others can help. So I know you will feel guilty and jealous, as Dutchman says. I do too. But we've done the right thing and the care homes and their amazingly wonderful staff look after all of us too.
 

Old Flopsy

Registered User
Sep 12, 2019
167
0
Hi @update2020

What a lovely post - I am in such an emotional mess today it was heartwarming to read 'a team of exceptionally wonderful people 24/7 to care for him' and, 'their amazing wonderful staff look after us too' - oh I do hope so.

I agree we get to a point where ' it can't be done on your own'.

Thankyou
 

Dutchman

Registered User
May 26, 2017
1,044
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73
Devon
Hi everyone. I know it’s late but I’ve been chewing over something today and comments please if you can. It’s delicate and uncomfortable.

Phoned the home this morning and they said that at this moment Bridget is holding onto a carers hand tightly and won’t let go. Now my concern is that she may be holding on for comfort and security because she’s frightened about something and it’s her only way of showing it. She cannot verbalise any concerns. I’d hate to think that something has happened.
How do I approach this when it could all be innocent and just me worrying.
I cannot protect her at a distance and need to trust the home in all things. I don’t want to be suspicious needlessly.

God, it’s so hard when a man can’t look after and protect the one he loves, because that was my job, now taken away.
 

blackmortimer

Registered User
Jan 2, 2021
92
0
Hi everyone. I know it’s late but I’ve been chewing over something today and comments please if you can. It’s delicate and uncomfortable.

Phoned the home this morning and they said that at this moment Bridget is holding onto a carers hand tightly and won’t let go. Now my concern is that she may be holding on for comfort and security because she’s frightened about something and it’s her only way of showing it. She cannot verbalise any concerns. I’d hate to think that something has happened.
How do I approach this when it could all be innocent and just me worrying.
I cannot protect her at a distance and need to trust the home in all things. I don’t want to be suspicious needlessly.

God, it’s so hard when a man can’t look after and protect the one he loves, because that was my job, now taken away.
Hello @Dutchman . I sympathise with your quandary and wish I had the answer. However, it occurs to me, based on my own experience, that it is far more likely that something in Bridget's "inner" world is troubling her - something like a bad dream maybe - rather than anything that's actually happened in the "real" world. But you want to reassure yourself and so would I. The only advice I can give is to say that in similar circumstances I have rung the Manager of the home not about anything specific but just a friendly call for an update on how Bridget's getting on during the course of which you might gently mention your concerns and make a judgement based on their response.
Alternatively, or in addition, is there a GP who visits regularly? If so they might be able to reassure you?
I know exactly how you feel. I had cause to ring Margaret's home yesterday for an update in the course of which it was mentioned that she was being "very challenging" and they were contacting the psychiatrist today to discuss her condition and medication. That sent my mind chasing off down all sorts of rabbit holes. But a good night's sleep has made me realise we've been here before and it's someone else who has to take the responsibility. So I must trust them. Sorry to not have anything better but people in our position have to trust

God bless,
 

Dutchman

Registered User
May 26, 2017
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73
Devon
Thank you so much @blackmortimer for that reassurance. I’m off to the home soon and hope to have chat with staff. You’re probably right that I’m unnecessarily worrying but, hey, that’s my job with too much time to ponder

I hope they can sort Margaret’s meds out satisfactorily and that you too get some positive reassurance from the home. I have to trust 100% the home as you do. So many things we can’t control anymore 😡

God bless, peter
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,353
0
High Peak
Just my opinion, Peter, but I'd guess that Bridget felt comforted when the carer first took her hand. Perhaps it made her feel safe - people with dementia often feel a generalised anxiety because the parts of the brain that would normally reassure us are broken. e.g. looking around and seeing familiar faces/surroundings. Without those reassurances to keep us grounded, life must be constantly confusing. But whereas that might be a nightmare scenario for someone without dementia, it isn't the same for those who have it because their perceptions are altered too and they no longer have the logic/understanding to react as we would. In other words her fear and axiety may be far less than you think, not specific but much more of a generalised thing.

And it seems that holding the carer's hand relieves much of Bridget's anxiety. The carers continue to tell you she is happy and that they love her. But I understand your 'jealousy' that she takes comfort from someone other than you...
 

Dutchman

Registered User
May 26, 2017
1,044
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73
Devon
Thank you so much @Jaded'n'faded and @blackmortimer for your helpful and comforting comments.

I visited the home yesterday and Bridget was asleep so I said not to wake her. I asked for a senior member of staff to talk outside so i could find out about Bridget and I was thankfully reassured. It’s so much easier and productive when you can talk in person, even with masks on. I came away feeling better. I think it is good, however, that the staff are aware that I take the trouble to go deeper into Bridget’s welfare at the home ( I’m the only husband who visits).

Thanks once again
Peter
 

blackmortimer

Registered User
Jan 2, 2021
92
0
Thank you so much @Jaded'n'faded and @blackmortimer for your helpful and comforting comments.

I visited the home yesterday and Bridget was asleep so I said not to wake her. I asked for a senior member of staff to talk outside so i could find out about Bridget and I was thankfully reassured. It’s so much easier and productive when you can talk in person, even with masks on. I came away feeling better. I think it is good, however, that the staff are aware that I take the trouble to go deeper into Bridget’s welfare at the home ( I’m the only husband who visits).

Thanks once again
Peter
So relieved to hear, Peter. I think you've taken the right course and am sure you've nothing to worry about.

I'm waiting to hear from the nursing home that they've made contact with the psychiatrist. My son rang yesterday and spoke to Margaret. All he got from her was that "she knew who he was and that he had killed her dog"! This is an old trope (the dog is fit and well needless to say!) and hopefully will help the psychiatrist find some better meds,
Here's hoping, anyway.

Keep up the good work, Peter. God bless,
 

big l

Registered User
Aug 15, 2015
71
0
Hi Dutchman and Old Flopsy. I used to post on here regularly under another name - but I had all my posts deleted when things got too much. Short version: I cared for my husband for around 12 years at home as he slowly developed early onset dementia. He finally moved into residential care around 21 months ago and has had a tough time being sectioned and treated with antipsychotics. It's been - and is - a very very rough ride. On top of that I've been unable to visit him over the last year until just a couple of weeks ago because of Covid. He is just 64. So I totally understand your mixed feelings. I would still - even now - much rather be with my husband than without him. But he is just so very ill, and it takes a team of exceptionally wonderful people 24/7 to care for him. No individual could do this on their own. It becomes physically impossible, let alone mentally, after a while. The hard thing is knowing when is the right time to make the change and that is when others can help. So I know you will feel guilty and jealous, as Dutchman says. I do too. But we've done the right thing and the care homes and their amazingly wonderful staff look after all of us too.
Thank you. Your honesty, though hard, is a comfort in a strange way.
 

blackmortimer

Registered User
Jan 2, 2021
92
0
Thank you. Your honesty, though hard, is a comfort in a strange way.
Following on from my post yesterday, this afternoon I had a call from the home to say that Margaret had been running a temperature and they had done a test which showed she had an UTI so they had called the GP who had prescribed antibiotics which she had already stated on. I was very comforted that they had been so quick to act (if she'd been at home getting even to speak to the GP would have been quite a rigmarole) and equally quick to update. It explains to some extent her recent difficult behaviour and reassures me that she's in very good hands.

I think that, in light of my experience, people should be more positive about the upside of moving one's loved one into a suitable care or nursing home. I was terribly guilt stricken (sometimes still am but it's diminishing) but ws probably thinking of myself too much and of Margaret's best interests too little.

God bless,
 

Dutchman

Registered User
May 26, 2017
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73
Devon
Oh that call from the home @blackmortimer I’m so glad that Margaret’s UTI has been diagnosed so quickly. Bridget had some because she wasn’t washing herself satisfactorily. You wouldn’t believe the palaver I had trying to get a wee sample from her when she was here at home. I’d make an awful nurse

I saw my darling today and once again I’m impressed by the care they take. Another visitor praised the home as well. But, I’m never too far from being upset and I do the best I can to lessen the pain. Today I slept on the sofa at dinner time to get rid of an hour or so. I get tired with worry and grief. Anything to get me through the day.

Peter
 

Dutchman

Registered User
May 26, 2017
1,044
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73
Devon
Hello everyone. Nothing extraordinary to say today but some feelings I’d like to unload. With me it’s a lack of control when I can’t even help Bridget with her care. All I can do is visit with flowers, fruit, a nice card with loving words and stand there looking at a woman I used to know now decimated by bloody dementia. I feel so helpless.

And grief catches me out at the most unexpected moment when I seem to have short periods of calm. Anything can do it; a picture, crockery, a plant; in fact anything we shared together. I move stuff and feel guilty. I change stuff and feel guilty. It’s almost like one day she’ll come home ( fairytale) and complain” why did you do that?”.

Losing Bridget to dementia and losing her being here with me has been the worse thing in my whole life. I used to think other periods in my life were bad but this cannot compare. Some have said to me that now she longer knows you as her husband, even as Peter, why do you still feel such love for her. Love doesn’t stop just like that. Real love is unconditional .

God bless , Peter
 

Old Flopsy

Registered User
Sep 12, 2019
167
0
Hi Dutchman- how I feel your pain.

I am dreading my first Easter alone in this house surrounded by everything I shared with OH.

I am heading to the care home shortly to take clothes, pictures, photos etc to make him feel 'at home' but it feels like I am clearing out after someone has died.

Obviously I won't see him- I don't want to yet as I know he will think I am taking him home which I cannot do- no matter how much I think I could cope, in reality I can't.

How useless am I.

It is so distressing.
 

blackmortimer

Registered User
Jan 2, 2021
92
0
Hello everyone. Nothing extraordinary to say today but some feelings I’d like to unload. With me it’s a lack of control when I can’t even help Bridget with her care. All I can do is visit with flowers, fruit, a nice card with loving words and stand there looking at a woman I used to know now decimated by bloody dementia. I feel so helpless.

And grief catches me out at the most unexpected moment when I seem to have short periods of calm. Anything can do it; a picture, crockery, a plant; in fact anything we shared together. I move stuff and feel guilty. I change stuff and feel guilty. It’s almost like one day she’ll come home ( fairytale) and complain” why did you do that?”.

Losing Bridget to dementia and losing her being here with me has been the worse thing in my whole life. I used to think other periods in my life were bad but this cannot compare. Some have said to me that now she longer knows you as her husband, even as Peter, why do you still feel such love for her. Love doesn’t stop just like that. Real love is unconditional .
Hi Dutchman- how I feel your pain.

I am dreading my first Easter alone in this house surrounded by everything I shared with OH.

I am heading to the care home shortly to take clothes, pictures, photos etc to make him feel 'at home' but it feels like I am clearing out after someone has died.

Obviously I won't see him- I don't want to yet as I know he will think I am taking him home which I cannot do- no matter how much I think I could cope, in reality I can't.

How useless am I.

It is so distressing.
You're not useless @Old Flopsy , never think that. You're being useful in a different way. I remember the shock of Margaret suddenly being transferred to the nursing home from hospital. I had to gather together photos and ornaments and what she calls her "trinkets" and take them to the home. Fortunately it was in the lull between lockdowns and my son came up to help. Without him I would have been hopeless. But later when I was back on my own I replaced all the things I had taken with other similar things, made sure there were photos to replace the ones from her bedroom, even found another tin full of "trinkets" to put back onto her dressing table - as a result I could feel she was still here and it gave me something to busy myself with. Of course it my not work for everyone, but it has helped me these last months.




God bless , Peter
 

blackmortimer

Registered User
Jan 2, 2021
92
0
I think I may have "broken the internet" with my last post! It was intended as a reply to @Old Flopsy but somehow got sandwiched between her post and one from @Dutchman. I hope you will understand. I also wanted to reach out to @Dutchman as it happens, so perhaps it will make some kind of "cybersense" after all. Your words about love are spot on, Peter, and bring to mind Shakespeare's sonnet starting something like "Let me not to the marriage of true minds admit impediment" and then goes on "Love is not love that alters when it alteration finds". It was something that Margaret used to quote and never a day goes by when I don't realise just how much it hits the mark.

Easter will be hard. It's always, I find, a bitter-sweet time and this year probably more bitter than sweet. But I shall get myself some fish for Good Friday, the sort Margaret particularly likes and try and remember the time before dementia struck its cruel blow.

God bless