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Should I let go?

blackmortimer

Registered User
Jan 2, 2021
93
0
I'm new to this site having joined because my daughter thought it would help me. I wonder if my experiences strike a chord with anyone else.

My wife Margaret started showing symptoms that something was wrong about 6 years ago. It was mainly delusions and slight loss of balance to start with. She had always walked the dog a lot over rough ground without any problem but she began to complaining that the grass in the park was "going up and down". Then a few months later she started having hallucinations - quite extravagant ones such as children dancing in the garden or a fun fair in the neighbour's garden across the road. We thought it might be delirium and eventually got her to see the doctor who suspected an infection e.g. UTI and sent her for a blood test and prescribed antibiotics.

To cut quite a long story short it wasn't an infection and we began to suspect dementia - in particular Lewy Body - which eventually was diagnosed about 2/3 years ago. She was quite a difficult patient, didn't like people coming to the house except family and resisted seeing the nurse or consultant from the local memory clinic for quite a while. All this time I was sole carer since our adult son and daughter both live a distance away and could only visit weekly at best. Eventually we got an official diagnosis of LBD in April 2019 by which time the symptoms had become quite clear - regular hallucinations particularly of small children and non-existent animals, balance problems misjudging distances and a change of personality from a relatively cheerful outgoing person to a miserable suspicious grouch.

Various medications were tried with not much success but I settled down to being a carer knowing that even though I was 80 I was at least reasonably fit and healthy and I suppose like everyone (at least most men!) I thought I was invincible. So I soldiered on getting more and more tired and to be honest more and more bad tempered with the constant demands made on me. I had to do the shopping tend the garden and walk the dog and was constantly complained at because I'd left her to go to Sainsbury's or whatever. Eventually she got worse to the extent of going into rages and lashing out at me. So one Sunday morning in June I snapped, called an ambulance and she taken off to the local general hospital.

She was put into a geriatric ward initially but caused so much trouble that after a few days she was sectioned and taken to the adjoining adult mental health unit which was one of the best things to happen - they were able to look after her properly, for the first time got her to have a scan, sorted out medication and she seemed to settle reasonably well. Because of Covid I wasn't able to see her as often as I wanted but as the time went on the visiting restrictions were relaxed and I went several times a week. Sometimes she was fine, others she refused to see me but the staff were very good and assured me it was the disease and not to take any of it personally.

She was in the unit and had settled down nicely when because of pressure on beds (plus I suppose Covid) they said they couldn't do any more and she would have to move to a suitable nursing home. By this time she was no longer subject to the Section but was under a DOL.
We found a nursing home with their assistance which is reasonably near and she moved there in November last. I haven't been able to see her because of the Covid rules affecting care homes (except once through a window when she didn't seem to recognise me or have any conversation with me) I've tried to speak to her on the phone that they have for residents but to little effect.

d leave contact
She seems to have settled in well and even has a friend that she's made since she's been in the home. My son, who is technologically literate and my daughter (ditto) have had a "Whatsapp" call and say she seems to have settled in but is now living in a world of her own. I have been regularly phoning the home to make sure that's she's OK (she has had a couple of falls one before and one after she moved) and on Saturday they put her on. She seemed to know who I was and made it very clear she didn't want to speak to me and "didn't want me meddling in her life". My son and my daughter assure me that it's just the disease and intellectually I know they're right. But I feel terribly guilty most of the time. I know I couldn't look after her at this stage and because of the DOL they wouldn't let me anyway but I can't get rid of the feeling that somehow "it's all my fault" and perhaps I shouldn't have called that ambulance.

I've rambled on a lot I know and maybe (hopefully even) it's all very familiar to you but the question I have is should I let go and accept that Margaret is in her own world where maybe she's happy and maybe I'm an undesirable reminder of things she doesn't want to think about? Time to back away and let my children take the strain - they're quite happy to do that. Does any of this ring a bell with anyone out there?
 

Shedrech

Volunteer Moderator
Dec 15, 2012
10,088
0
Yorkshire
hello @blackmortimer
a warm selcome to DTP

you, your wife and children have had a tough few years, which have taken their toll

it's not your fault that sadly your wife's dementia made life together so challenging ... she needed for you to call the ambulance, by doing that you found the way to get her the help she needed

sadly your wife is in her world and it's not possible to be there with her ... it's not that you're an unwanted reminder it's that the dementia has robbed her of the memories of your life together, and so robbed you of sharing those ... and it's not that she doesn't want to think of you, it's that her brain has been damaged so her ability to think is compromised

you are grieving the loss of your wife as she is no longer with you physically or, so very sadly, mentally and emotionally ... that's so tough after so many years together

maybe you do need some time to breathe .... it's good that your children are being supportive of you both and you clearly trust and respect them ... that's a wonderful reflection on you and your wife

best wishes to all of you
 

canary

Registered User
Feb 25, 2014
14,939
0
South coast
I am so sorry to hear about your wife.

Please be assured, though, that there was nothing that you could have done to prevent your wife reaching this stage. As Shedrech says, she is in her own little bubble because she has lost the memories of your time together and its not that she doesnt want to think about it - its because she is not able to anymore.

If you hadnt called that ambulance she would probably be in a worse state, because where she is she is getting proper medication and is being cared for round the clock, and you would probably have become ill, so please get rid of that guilt.

Making contact with someone living in a care home is extremely difficult at the moment and lots of people are finding it stressful. Once visiting in person becomes possible again you may find that there is still a connection there between you and your wife.
 

blackmortimer

Registered User
Jan 2, 2021
93
0
Thank you for your kind words. It helps. I know I shouldn't feel guilty and, as I'm regularly reminded , guilt is a form of self pity. So I shall take comfort in your words and agree that Margaret is in a place where she can be looked after far better than I could. Thanks again
 

blackmortimer

Registered User
Jan 2, 2021
93
0
hello @blackmortimer
a warm selcome to DTP

you, your wife and children have had a tough few years, which have taken their toll

it's not your fault that sadly your wife's dementia made life together so challenging ... she needed for you to call the ambulance, by doing that you found the way to get her the help she needed

sadly your wife is in her world and it's not possible to be there with her ... it's not that you're an unwanted reminder it's that the dementia has robbed her of the memories of your life together, and so robbed you of sharing those ... and it's not that she doesn't want to think of you, it's that her brain has been damaged so her ability to think is compromised

you are grieving the loss of your wife as she is no longer with you physically or, so very sadly, mentally and emotionally ... that's so tough after so many years together

maybe you do need some time to breathe .... it's good that your children are being supportive of you both and you clearly trust and respect them ... that's a wonderful reflection on you and your wife

best wishes to all of you

hello @blackmortimer
a warm selcome to DTP

you, your wife and children have had a tough few years, which have taken their toll

it's not your fault that sadly your wife's dementia made life together so challenging ... she needed for you to call the ambulance, by doing that you found the way to get her the help she needed

sadly your wife is in her world and it's not possible to be there with her ... it's not that you're an unwanted reminder it's that the dementia has robbed her of the memories of your life together, and so robbed you of sharing those ... and it's not that she doesn't want to think of you, it's that her brain has been damaged so her ability to think is compromised

you are grieving the loss of your wife as she is no longer with you physically or, so very sadly, mentally and emotionally ... that's so tough after so many years together

maybe you do need some time to breathe .... it's good that your children are being supportive of you both and you clearly trust and respect them ... that's a wonderful reflection on you and your wife

best wishes to all of you
Thank you for your reply. It was very helpful. There was something of an irony or perhaps piquant coincidence in your quotation from T.S.Eliot. Margaret was very fond of his work having studied it in some depth at college and one of my fondest memories of better times is when we visited East Coker, where he is buried, many years ago during a holiday in Devon. So thank you for that reminder of sunnier times.
 

Hazara8

Registered User
Apr 6, 2015
616
0
Thank you for your kind words. It helps. I know I shouldn't feel guilty and, as I'm regularly reminded , guilt is a form of self pity. So I shall take comfort in your words and agree that Margaret is in a place where she can be looked after far better than I could. Thanks again
Your words will chime with numerous others who have walked this precarious path with dementia in a loved one. There are two fundamental points which can alleviate the all so familiar " guilt " which colours your thinking and is often relentless in one's relationship to the Care that has been given so willingly and also not at all easily. These are: the disease. Dementia . Its profound influence on behaviour remains not only incurable but still a mystery. We can scan and apply state of the art investigation, especially post mortem, to discover what might have been the central causation of that behaviour. But it is in the day to day relationship where we communicate with the " actuality " of a dementia as it presents in a loved one. So the disease must be seen for what it is - an interloper which claims all the characteristics of the one you know intimately and changes them. This neither you nor most certainly the one living with that disease can help whatsoever. Fact. The other fundamental point rests with the " guilt " of a 'cry for help ' i.e. respite, Care Home, assisted care etc., When Care becomes nigh on impossible due to either the sheer workload or the continuous aggression or non cooperation of a loved one, which culminates in an " emergency ", then you have no choice but to call the ambulance before things become seriously out of control. This you do not want at all because it is frankly simply dreadful to undergo. Thus, you have no choice? The nagging battle between " best interests " for a loved one and one's personal needs in respect of a relationship and how it is so cruelly compromised by dementia, embraces the ' guilt ' factor along with the real unavoidable fact that you cannot go beyond what is possible. Fact.
When the Covid nightmare abates enough to allow proper and uninhibited visits to Care Homes , you can go armed with certain 'realities ' in mind which provide perspective and perception in relation to what you will find in behaviour and overall response from a loved one. A hard and very challenging prospect is this. But the person one has known for such a long time and who cannot in any way be held responsible for the disease which ravages their mind, remains within, albeit hidden and so often seemingly absent to the longing eye. But if you bypass the disease as an imposter in all its guises and remain as one with the loved one within, whilst certainly challenging, it nevertheless is honest and affords a degree of genuine solace because even dementia cannot touch the love which is wordless, but is seen in the simple holding of a hand and the conjoining of eyes, the window of the soul.
 

DennyD

Registered User
Dec 6, 2016
186
0
Porthcawl, South Wales
But if you bypass the disease as an imposter in all its guises and remain as one with the loved one within, whilst certainly challenging, it nevertheless is honest and affords a degree of genuine solace because even dementia cannot touch the love which is wordless, but is seen in the simple holding of a hand and the conjoining of eyes, the window of the soul.
Just want to say I think you are giving a great insight and one I will take with me when visiting my loved one on Wednesday.
 

Hazara8

Registered User
Apr 6, 2015
616
0
Just want to say I think you are giving a great insight and one I will take with me when visiting my loved one on Wednesday.
That is very kind. Unlike so many diseases and illnessnes dementia renders the application of both clinical or therapeutic means often redundant. But we can address that dilemma in a way which requires no specialised knowledge. That is what l have found. In that respect it is a blessing. One can sit down beside a resident and listen. Listen with all one's heart, despite the incoherent rambling or the paranoia or the delusionary expressions. You never question any of that because it is a "reality" for the loved one and NOT an illusion. You move with it and then, if and when there is an opportunity, you nurture even a glimpse of recognition. With cognition we are hungry for comfort and our capacity enables recognition when it is given. Dementia clouds and confuses cognition. But in nearly all cases in my own observation, touch and carefully chosen words can bring about 'communication'. Often no words are required, just being there is enough. When you visit on Wednesday the one you know probably better than anyone, the humanity which governs compassion will not deny the dementia intruder, instead know it to be what it is - even when it purports to be the real person. Because the real person is all that matters and in the holding of a hand ( if permitted) you communicate with that person in a way which dementia can never do, nor ever deny.
 

blackmortimer

Registered User
Jan 2, 2021
93
0
Your words will chime with numerous others who have walked this precarious path with dementia in a loved one. There are two fundamental points which can alleviate the all so familiar " guilt " which colours your thinking and is often relentless in one's relationship to the Care that has been given so willingly and also not at all easily. These are: the disease. Dementia . Its profound influence on behaviour remains not only incurable but still a mystery. We can scan and apply state of the art investigation, especially post mortem, to discover what might have been the central causation of that behaviour. But it is in the day to day relationship where we communicate with the " actuality " of a dementia as it presents in a loved one. So the disease must be seen for what it is - an interloper which claims all the characteristics of the one you know intimately and changes them. This neither you nor most certainly the one living with that disease can help whatsoever. Fact. The other fundamental point rests with the " guilt " of a 'cry for help ' i.e. respite, Care Home, assisted care etc., When Care becomes nigh on impossible due to either the sheer workload or the continuous aggression or non cooperation of a loved one, which culminates in an " emergency ", then you have no choice but to call the ambulance before things become seriously out of control. This you do not want at all because it is frankly simply dreadful to undergo. Thus, you have no choice? The nagging battle between " best interests " for a loved one and one's personal needs in respect of a relationship and how it is so cruelly compromised by dementia, embraces the ' guilt ' factor along with the real unavoidable fact that you cannot go beyond what is possible. Fact.
When the Covid nightmare abates enough to allow proper and uninhibited visits to Care Homes , you can go armed with certain 'realities ' in mind which provide perspective and perception in relation to what you will find in behaviour and overall response from a loved one. A hard and very challenging prospect is this. But the person one has known for such a long time and who cannot in any way be held responsible for the disease which ravages their mind, remains within, albeit hidden and so often seemingly absent to the longing eye. But if you bypass the disease as an imposter in all its guises and remain as one with the loved one within, whilst certainly challenging, it nevertheless is honest and affords a degree of genuine solace because even dementia cannot touch the love which is wordless, but is seen in the simple holding of a hand and the conjoining of eyes, the window of the soul.
 

blackmortimer

Registered User
Jan 2, 2021
93
0
Thanks for articulating so elegantly much of what I feel. You echo things I tell myself time and time again every day. I think the trouble is that, as with bereavement, one goes through stages such as disbelief, refusing to accept etc but unlike bereavement which is final dementia isn't. The loved one is literally still there, circumstances changing even if in a decline and false hopes can so easily be raised. Early on I think I must have believed that somehow, magically, the hospital would sort it all out and Margaret would come back if not cured then at least somehow "better". I busied myself doing all the tasks about the house I hadn't had time for when I was caring full time, made sure everything was just as she left it. Then as the months went by I gradually came to accept that wasn't going to happen but as Covid had set in by then and I couldn't do much other than keep the house and garden tidy and walk the dog another period of unreality set in. Also the period of settling her in at the nursing home, dealing with the office work of it all , sorting out things to take for her room even though I couldn't visit in the sense of seeing her all this kept me feeling useful and in a way connected. Now, even though the end of Covid is in sight and I've had my first vaccination dose I feel somehow suddenly redundant and from my recent attempt at telephone communication an unwanted intruder in Margaret's "new life". It's, I suppose, a bit like finding oneself the unwilling victim of a divorce!

Anyway, my son tried to speak to M on the phone today only to be rebuffed before he even spoke on the grounds that "she didn't want to speak to anybody"! So it's not just me; it's more like she's now in a world where I can't go and one in which I can only hope she's happy. Because that's all I want - Margaret to be happy.
 

canary

Registered User
Feb 25, 2014
14,939
0
South coast
It may be that its the phone itself thats the problem @blackmortimer .
When mum first moved into her care home I could talk to her on the phone, but very quickly she started forgetting that it was me on the other end - she would tell me " oh <canary> has been to see me" and tell me what we had been doing or often just didnt want to talk. Yet when I visited in person her face would light up as soon as she saw me.

I know you cant visit in person at the moment, but it looks like you soon will be able. See what happens then. If nothing else, you will be able to keep an eye on things, check her clothes and toiletries and see if she needs any more, get to know the staff and generally feel more part of it all
 

Helly68

Registered User
Mar 12, 2018
780
0
@blackmortimer - I am responding as I see some parallels in your experience and that of my parents. My mother had Bipolar Disorder and then mixed dementia. After her dementia diagnosis she stayed at home with my father for about four years, before she went for some day care at a care home that she then became a permanent resident at. It was very important for my father that we made this transition, he had been her carer during sectioning due to Bipolar and then caring for her with dementia, and he had reached the end of what he could do. I said to him that I would oversee her transfer to the care home and I continued to visit regularly until Covid. He visited initially and then stopped. I think they both found the visits hard and my father has a fear of institutions. Not surprising since both myself and my mother spent long periods in hospital.
We agreed that he would stop visiting, and that I would continue and we would not judge each other but just accept this. I think it worked, as well as things do in the later stages of dementia. Mummy never asked where he was and he did visit occasionally, but did not feel compelled.
Dementia changes people dramatically. Mummy formed very close bonds with the care staff and we were lucky in that her home were very good. My parents had always had a difficult relationship, with a lot of challenges, and dementia was only going to make things worse.
Try to take comfort from her being safe in her own world. Guilt is an awful thing, but we can only try and find the least worst options with this awful disease.
 

blackmortimer

Registered User
Jan 2, 2021
93
0
Thank you for that message, Canary. Your father was obviously very much in the same place that I am now. I can relate to the idea that one needs permission to disengage so to speak. As it seems that as from 8th March when visiting is allowed again only one person is going to be allowed and also have to be "designated" I have tenatatively suggested that my son and daughter agree between them that that person be one of them and they seem open to that. My experience of visiting during M's stay in hospital suggests that that might be better for my mental health. As I live relatively near to the nursing home, once travel is allowed again the one visiting can come to see me in the same trip which would be a great blessing. Thanks for your insight. You've helped lift the fog which always seems to descend when I start thinking of these things
 

blackmortimer

Registered User
Jan 2, 2021
93
0
Thank you for that message, Canary. Your father was obviously very much in the same place that I am now. I can relate to the idea that one needs permission to disengage so to speak. As it seems that as from 8th March when visiting is allowed again only one person is going to be allowed and also have to be "designated" I have tenatatively suggested that my son and daughter agree between them that that person be one of them and they seem open to that. My experience of visiting during M's stay in hospital suggests that that might be better for my mental health. As I live relatively near to the nursing home, once travel is allowed again the one visiting can come to see me in the same trip which would be a great blessing. Thanks for your insight. You've helped lift the fog which always seems to descend when I start thinking of the
Thank you for that message, Canary. Your father was obviously very much in the same place that I am now. I can relate to the idea that one needs permission to disengage so to speak. As it seems that as from 8th March when visiting is allowed again only one person is going to be allowed and also have to be "designated" I have tenatatively suggested that my son and daughter agree between them that that person be one of them and they seem open to that. My experience of visiting during M's stay in hospital suggests that that might be better for my mental health. As I live relatively near to the nursing home, once travel is allowed again the one visiting can come to see me in the same trip which would be a great blessing. Thanks for your insight. You've helped lift the fog which always seems to descend when I start thinking of these things
 

blackmortimer

Registered User
Jan 2, 2021
93
0
I apologise for calling you by the wrong name, Helly68. I'm not as technologically proficient as I should be!!
 

blackmortimer

Registered User
Jan 2, 2021
93
0
It may be that its the phone itself thats the problem @blackmortimer .
When mum first moved into her care home I could talk to her on the phone, but very quickly she started forgetting that it was me on the other end - she would tell me " oh <canary> has been to see me" and tell me what we had been doing or often just didnt want to talk. Yet when I visited in person her face would light up as soon as she saw me.

I know you cant visit in person at the moment, but it looks like you soon will be able. See what happens then. If nothing else, you will be able to keep an eye on things, check her clothes and toiletries and see if she needs any more, get to know the staff and generally feel more part of it all
You could well be right. She does seem to blur the distinction between me on the telephone and me in person. I've been able to get to know staff by way of regular phone calls and a couple of trips to the home at the beginning to take stuff. I'm thinking that as we have to designate one only person to visit as from 8th March I will let that person be one of the children. I know that they are keen to see the nursing home for themselves (so far impossible) and to satisfy themselves that their mother is in good hands (I'm fairly confident she is). That way I can avoid the distress and embarrassment of being told to ".........off" whilst at the same time being able to rely on designated son or daughter to keep me updated. Thanks for your postings - they make it seem more manageable.
 

Weasell

Registered User
Oct 21, 2019
1,282
0
My top two tips.
Tip 1, Just read a few posts that other people have put on the forum every day.

We all suffer from guilt. Guilt they are in a home, guilt they are not in a home. I don’t own enough ink to write the whole menu of guilt options that we have when being involved with the care of someone with dementia.

Reading about the experiences of others most definitely helps, and more importantly you learn. Depending on what happens in the future your children may need some wise words to keep them going ? Those that are the flavour of the month don’t always remain favourites?

We can imagine what your caring history was like and I think it sounds like you did remarkably well. I don’t think I would have lasted as long as you.

Tip 2, ( I won’t confess how long it took me to learn this one because it is embarrassing)
Put the @ symbol before the name you are mentioning.
So if you put @wea you will see flash up a list of people with that start to their name, and you will see @Weasell you just put your finger on it, then it puts it in your post and turns it light blue.
The advantage to doing this is it sends an alert to tell the person you mentioned them, which is nice.
 

blackmortimer

Registered User
Jan 2, 2021
93
0
My top two tips.
Tip 1, Just read a few posts that other people have put on the forum every day.

We all suffer from guilt. Guilt they are in a home, guilt they are not in a home. I don’t own enough ink to write the whole menu of guilt options that we have when being involved with the care of someone with dementia.

Reading about the experiences of others most definitely helps, and more importantly you learn. Depending on what happens in the future your children may need some wise words to keep them going ? Those that are the flavour of the month don’t always remain favourites?

We can imagine what your caring history was like and I think it sounds like you did remarkably well. I don’t think I would have lasted as long as you.

Tip 2, ( I won’t confess how long it took me to learn this one because it is embarrassing)
Put the @ symbol before the name you are mentioning.
So if you put @wea you will see flash up a list of people with that start to their name, and you will see @Weasell you just put your finger on it, then it puts it in your post and turns it light blue.
The advantage to doing this is it sends an alert to tell the person you mentioned them, which is nice.
@Weasell . Thanks for the tips. Number one I have already adopted. Number 2 is something I never knew and, being something of a dinosaur, probably never would without your prompt. I had always wondered what the significance of the @ sign was!!. Again many thanks.
 

jennifer1967

Registered User
Mar 15, 2020
3,229
0
Southampton
My top two tips.
Tip 1, Just read a few posts that other people have put on the forum every day.

We all suffer from guilt. Guilt they are in a home, guilt they are not in a home. I don’t own enough ink to write the whole menu of guilt options that we have when being involved with the care of someone with dementia.

Reading about the experiences of others most definitely helps, and more importantly you learn. Depending on what happens in the future your children may need some wise words to keep them going ? Those that are the flavour of the month don’t always remain favourites?

We can imagine what your caring history was like and I think it sounds like you did remarkably well. I don’t think I would have lasted as long as you.

Tip 2, ( I won’t confess how long it took me to learn this one because it is embarrassing)
Put the @ symbol before the name you are mentioning.
So if you put @wea you will see flash up a list of people with that start to their name, and you will see @Weasell you just put your finger on it, then it puts it in your post and turns it light blue.
The advantage to doing this is it sends an alert to tell the person you mentioned them, which is nice.
ive learnt how to do that today as well @Weasell. tried for so long