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Dementia’s journey

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
I’ve decided to make definite enquiries about selling our caravan. I’ve decided I wouldn’t enjoy it on my own or with anyone else as there’s too many memories.

I feel unusually tired today. Had to go to the hospital for a kidney scan this morning and it’s knocked me out - the drive and the anxiety of a hospital. And I think the overall constant situation with Bridget. Just feel drained of energy.

I’m beginning to feel as though Bridget and me happened in a previous life. Every time I visit ( I will this afternoon) I find a woman who doesn’t know me as her husband and that feeling accumulates every week into a forced distance between us. How can it not? A loving relationship needs equal input and I love her and she sees me as a nice man. I’ll love her and miss her till the day I die. It’s all very sad.
 

Dutchman

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May 26, 2017
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Devon, Totnes
I’m reflecting and it’s deadly. I’m here and Bridget’s left here and living somewhere else. None of this seems real somehow, that it’s happening to someone else - ought to be happening to someone else.

Of course none of us planned for this type of future and I really believed that we’d have so many more years of ordinary life. Then dementia creeps up bit by bit eating away at those plans and I’m left holding the memories.
 

Violet Jane

Registered User
Aug 23, 2021
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It's quite natural that you are drained by the stress of the whole situation with Bridget and by anxiety about a hospital visit. Please look after your health; don't let dementia take that away from you too. On another thread (I can't remember which) there is a discussion about getting rid of things before the PWD dies and your caravan is one of those but I suppose that it's a bit different because it was a joint possession. There's no right answer to the question of when one should get rid of things, and there are practical considerations too in the case of the home having to be sold or let.

In this era of increased life expectancy and improved treatments for many diseases it is understandable that you are bitter about Bridget's dementia which has robbed you of the years that you hoped to have together. It's a sad fact that many people develop dementia in their sixties and seventies when they are otherwise quite fit and healthy and could realistically have expected a decade or more of good or reasonable health. It's also a sad fact that there has been very little progress in the treatments for dementia and none of them is curative or improves brain function by much. This is in contrast to the enormous progress in treating heart disease, strokes and many cancers. I think that there is hope for developing a cure for Alzheimer's Disease, which has a very specific disease process, but I'm less hopeful about the prospects for vascular dementia.
 

blackmortimer

Registered User
Jan 2, 2021
284
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My daughter came to visit me today, visiting Margaret en route, and coincidentally we fell to discussing the question about what one should do about Margaret's quite extensive wardrobe, sadly ho longer required. It arose because my daughter was looking to see if there was a suitable autumn jacket. There was and I readily agreed that she could have because Margaret would have willingly let her - she was very generous with passing anything on to members of the family - but we both agreed that in principle her wardrobe should remain as she left it. As @Dutchman mentioned recently Margaret's clothes, her jewellery cosmetics and so on, even the arrangement of her bedroom are things I couldn't change or dispose of because as long as they're here in some sense so is Margaret. If eventually she dies before me (which sadly is likely) I don't know what I shall do. Probably nothing. The very thought of clearing her stuff out is so awful that the actuality of it is literally unthinkable if that makes sense. I just find myself living one day at a time because looking forward fills me with dread. I was even nervous about not visiting today even though my daughter was going and I shall go tomorrow. According to my daughter I need not have worried because Margaret showed no sign of realising who her daughter was or that I wasn't there. I don't know whether to be glad or sad. Both probably. God bless all of you.
 

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
I went to see Bridget today and she wasn’t relaxed at all. Kept wanting to get up and walk around rather than just sit down and us eat together calmly. In fact it got so irritating that I actually got quite abrupt with her and this shocked me. I thought, try doing this all day at home, just me and her, little help, no respite plus all the rest of the care needed. Impossible and dangerous and selfish.,

I also queried if they were putting the same clothes on her every day as I suspect it’s easier that way.,They assured me they didn’t but I’m not convinced. She doesn’t smell so perhaps I’m wrong. I have to be diplomatic.

I think going later at tea time is
around “sun downing” time and Bridget gets anxious and agitated.
 

Violet Jane

Registered User
Aug 23, 2021
236
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Dutchman and blackmortimer, you visit your wives almost daily. This is not a loaded question but how many visitors do the other residents of the home receive? Perhaps it was because I visited my mother during the week, and only every couple of weeks, but I saw few visitors at my mother's home.
 

Violet Jane

Registered User
Aug 23, 2021
236
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My mother went through a phase of restlessness, wandering unsteadily around the care home and falling repeatedly. It was extremely wearing and I really don't know how the staff coped with it. I was drained after an hour.
 

kindred

Registered User
Apr 8, 2018
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Dutchman and blackmortimer, you visit your wives almost daily. This is not a loaded question but how many visitors do the other residents of the home receive? Perhaps it was because I visited my mother during the week, and only every couple of weeks, but I saw few visitors at my mother's home.
at the nursing home where I volunteer visitors are now coming back so much. wives and husbands usually visit daily, sometimes staying all day. I think when someone is the centre of your universe this is a natural thing to do, although we know it may not be good for us on another level. And that others are concerned and want us to move on or at least have time away. We get through this terrible tragedy as best we can. At best it’s a muddle.
 

blackmortimer

Registered User
Jan 2, 2021
284
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From my experience you're both right, @Violet Jane and @kindred. Until a week or so ago there appeared to be comparatively few visitors at Margaret's nursing home; certainly I was the only one going in daily. Latterly however there seems to have been an increase and it's rare that I'm the only one. I've thought about whether I should step back a little as you imply, @Violet Jane but if I do (like yesterday when our daughter went instead of me) I only fret about whether Margaret might be missing me, whether she's getting enough fluid etc etc so it does me no good. The thing is that while I can never be sure if Margaret even recognises me, I like to think she does at least on some level and that my being there helps keep her going and comforted. I'm quite open to being shot down over this. She may see me as just another carer. However, if there's even a glimmer of a chance that my regular visits help then I must keep on. As you say, @kindred, we get through as best we can and I suppose this is my way.

I also recognise what you say about wandering, @Dutchman. Margaret used to be like that and had several falls. There are a couple of other residents who wander incessantly and would drive me mad if I had to care for them. I can understand why you get irritated when Bridget does this. Although Margaret is now bed-bound I sometimes find myself slipping back into "carer mode" when I'm trying to get her to eat or drink and irritation begins to mount when she spills something or makes a mess I have to clean up. I remind myself that this is exactly why she has to be in a nursing home. If I'm irritated by something so small how ever would I cope with all the other tasks? Answer, I couldn't. As you say, @Dutchman impossible dangerous and selfish. So we have to accept the situation and handle it as best we can. For me it's daily visiting; for someone else it might be weekly or even monthly. We just do what we have to, I think. God bless all of you.
 

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
Hi
From my experience you're both right, @Violet Jane and @kindred. Until a week or so ago there appeared to be comparatively few visitors at Margaret's nursing home; certainly I was the only one going in daily. Latterly however there seems to have been an increase and it's rare that I'm the only one. I've thought about whether I should step back a little as you imply, @Violet Jane but if I do (like yesterday when our daughter went instead of me) I only fret about whether Margaret might be missing me, whether she's getting enough fluid etc etc so it does me no good. The thing is that while I can never be sure if Margaret even recognises me, I like to think she does at least on some level and that my being there helps keep her going and comforted. I'm quite open to being shot down over this. She may see me as just another carer. However, if there's even a glimmer of a chance that my regular visits help then I must keep on. As you say, @kindred, we get through as best we can and I suppose this is my way.

I also recognise what you say about wandering, @Dutchman. Margaret used to be like that and had several falls. There are a couple of other residents who wander incessantly and would drive me mad if I had to care for them. I can understand why you get irritated when Bridget does this. Although Margaret is now bed-bound I sometimes find myself slipping back into "carer mode" when I'm trying to get her to eat or drink and irritation begins to mount when she spills something or makes a mess I have to clean up. I remind myself that this is exactly why she has to be in a nursing home. If I'm irritated by something so small how ever would I cope with all the other tasks? Answer, I couldn't. As you say, @Dutchman impossible dangerous and selfish. So we have to accept the situation and handle it as best we can. For me it's daily visiting; for someone else it might be weekly or even monthly. We just do what we have to, I think. God bless all of you.
@blackmortimer . So glad you see why I get irritated. But, of course, in our hearts we say to ourselves” why should I get irritated as she’s suffering from this disease and has no control and I could be understanding more, etc, etc.”, but I’m only a bloke trying to do my best in difficult circumstances.

I’m taking some more clothes in today and checking the changing of clothes while im there. Flying visit as I’m in tomorrow and Sunday ( volunteering). God bless.,I pray for all our people here and hope you all find some peace in your day
 

Old Flopsy

Registered User
Sep 12, 2019
266
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Hi @Dutchman @blackmortimer and all of you. I have just been to the home to visit OH and saw an ambulance parked outside with the doors open. I thought the carers must be dealing with a crisis so rather than ring the bell I went into the shop next door. I came out to find the ambulance doors closed so I rang the bell to be admitted to the home- the carer came to the door and pointed to the ambulance- she rushed past me and banged on the ambulance door- then told me OH is inside! He had pulled his catheter out in the night and was bleeding uncontrollably so they had been told by the district nurse to dial 999. I had thought that as OH is on palliative care the ambulance couldn't be for him, but they can take him to hospital if it is a treatable problem. At least I got to see him and although he had been uncommunicative with the ambulanceman I did get him to speak and he knew who I was. So I am in shock and waiting for news. We lurch from one crisis to the next.
 

kindred

Registered User
Apr 8, 2018
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Hi @Dutchman @blackmortimer and all of you. I have just been to the home to visit OH and saw an ambulance parked outside with the doors open. I thought the carers must be dealing with a crisis so rather than ring the bell I went into the shop next door. I came out to find the ambulance doors closed so I rang the bell to be admitted to the home- the carer came to the door and pointed to the ambulance- she rushed past me and banged on the ambulance door- then told me OH is inside! He had pulled his catheter out in the night and was bleeding uncontrollably so they had been told by the district nurse to dial 999. I had thought that as OH is on palliative care the ambulance couldn't be for him, but they can take him to hospital if it is a treatable problem. At least I got to see him and although he had been uncommunicative with the ambulanceman I did get him to speak and he knew who I was. So I am in shock and waiting for news. We lurch from one crisis to the next.
My dear what a shock, what a shock, as you say, lurch from one crisis to another. All thoughts and sympathy. Of course you are in shock. gxxx
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
What a shock. Sorry that you’re going through this. We need folks like us now understanding and being there for you. Keep us updated please❤️
 

Old Flopsy

Registered User
Sep 12, 2019
266
0
Hi all- thankyou for your support. I have just had a phone call- OH is being discharged and will be on his way back to the home soon. Phew- another crisis survived.
 

blackmortimer

Registered User
Jan 2, 2021
284
0
Just read your posts, @Old Flopsy. Glad to hear things seem better. I know well that sinking feeling when there's an ambulance parked outside the home. Even though it's unlikely you always think it's your loved one that's involved. Another example of the roller coaster of dementia! Hope you can get a good night's sleep. God bless
 

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