I don't know...
Many years ago, when my dear wife, Brenda, was initially diagnosed with Alzheimer's, a small, dark and brooding cloud appeared on the horizon. It has doggedly remained ever since, sometimes closer, sometimes further away but always present and always threatening.
I very quickly realised its composition - a single, persistent question: 'Should Brenda be in a home?'
Put starkly and in black & white like that it may seem to many readers to be quite a harsh and unfeeling question and I can understand why people might feel like that. The reality is that I am quite a practical and pragmatic person and know that, unless circumstances change dramatically, it is a question that will inevitably demand an answer - possibly in extremely dark circumstances and perhaps with a heart-wrenching urgency.
Should Brenda be in a home? I don't know.
By God's good grace it is many years since we received Brenda's diagnosis and, consequently, I have had a long time to consider the question. More importantly, I have come to realise that the answer depends on two further questions.
But before I go into that, I need to say that I have been deeply in love with Brenda since I first met her in 1977. It hardly needs saying that my prime aim is to personally take care of her for as long as I can. That is the foundation on which every decision about the future is made and is an immovable rock.
So what are those two questions? The first is relatively simple - am I physically capable of actually looking after her? In many ways that is the simpler of the two questions because it doesn't depend on grey areas such as opinions. Furthermore, the answer depends on me alone. Do I have the physical, mental and emotional capability to carry on taking care of Brenda at home? When we married we promised to look after each other "come no matter what"*(I paraphrase!) and I'm determined to see that commitment through to the end. Thankfully, we already have a huge band of amazing friends, helpers and supporters - both paid and voluntary - but all displaying a level of love and care for us that is truly humbling. I am sure each and every one of them has their own opinion and concerns about my well-being, but the bottom line (and I have shared this with a few people) is that my aim is to look after Brenda myself as long as I can and, if I can survive her by long enough to get our affairs in order, then I shall be happy. Now that doesn't mean that I don't want to live on after Brenda finally departs this vale of tears - I would love to be able to stick around and enjoy what remains of my life as much as I can - but I need to make sure that Brenda has been as happy as I can possibly make her before we part and, to put it bluntly, if my life-expectancy suffers then so be it.
The second is a bit more difficult and, although I am perfectly willing to listen to and carefully consider the thoughts of family, friends and helpers, the ultimate decision remains mine but will be a pure judgement call with the inherent possibilities of getting it amazingly right and soul-crushingly wrong.
This is the one I struggle with because it it the one that could, potentially, lead to me arranging for Brenda to go into care at relatively short notice.
Should Brenda be in a home? I don't know.
Part of me says that she must be happier here with me but there is an irksome voice that says "Well, actually, she doesn't know who you are for at least a major part of the time and you are spending a significant amount of time each day managing very mundane things like washing, dressing, feeding and toileting and doing them in a way that a home - a good home with caring, experienced staff - could actually manage better, leaving you to spend more quality time with her".
I have to admit that it is a persuasive argument.
I can easily imagine a scenario where I would go into see Brenda every day to chat or help with meals or maybe even take her out for trips and visits to places and friends and, because the overwhelming stresses of the day-to-day caring have been removed from my shoulders, those times could be really enjoyable for us both.
On the other hand, nobody (even me) knows what is actually going on inside Brenda's head. All I see and experience is the shadow of her former self who is often grumpy, disconnected from the world and those around her and resentful of what she perceives as interfering pains in the neck. But what if, beneath that shell, is the girl I fell in love with but who can no longer communicate her thoughts and emotions? How would 'that' person react to being transplanted to a home and cared for by - initially at least - complete strangers who never knew the vibrant lady she once was.
Should Brenda be in a home? I don't know.
When I have contemplated the question in the past, trying to at least get a handle on how I would make the decision if or when the time came, I always concluded that the critical piece of the puzzle would be whether Brenda knew who I was. The logic is that the quality of the care provided then becomes more important than who actually provides it ie whether it is me or a professional carer.
Of course, the final aspect is how I might feel as the one making that decision to place her in a home. No amount of carefully thought out and logical decision-making will, I am sure, stop me from being wracked with guilt, no matter how unfounded and baseless it may be. If things go well, I'm pretty sure that little voice will say it is just a matter of time and, if they go badly - for whatever reason - there will be the inevitable "told you so". Time alone will heal that wound but, in the meantime, I am left with one lingering question...
Should Brenda be in a home? I don't know. I honestly don't know.
Many years ago, when my dear wife, Brenda, was initially diagnosed with Alzheimer's, a small, dark and brooding cloud appeared on the horizon. It has doggedly remained ever since, sometimes closer, sometimes further away but always present and always threatening.
I very quickly realised its composition - a single, persistent question: 'Should Brenda be in a home?'
Put starkly and in black & white like that it may seem to many readers to be quite a harsh and unfeeling question and I can understand why people might feel like that. The reality is that I am quite a practical and pragmatic person and know that, unless circumstances change dramatically, it is a question that will inevitably demand an answer - possibly in extremely dark circumstances and perhaps with a heart-wrenching urgency.
Should Brenda be in a home? I don't know.
By God's good grace it is many years since we received Brenda's diagnosis and, consequently, I have had a long time to consider the question. More importantly, I have come to realise that the answer depends on two further questions.
But before I go into that, I need to say that I have been deeply in love with Brenda since I first met her in 1977. It hardly needs saying that my prime aim is to personally take care of her for as long as I can. That is the foundation on which every decision about the future is made and is an immovable rock.
So what are those two questions? The first is relatively simple - am I physically capable of actually looking after her? In many ways that is the simpler of the two questions because it doesn't depend on grey areas such as opinions. Furthermore, the answer depends on me alone. Do I have the physical, mental and emotional capability to carry on taking care of Brenda at home? When we married we promised to look after each other "come no matter what"*(I paraphrase!) and I'm determined to see that commitment through to the end. Thankfully, we already have a huge band of amazing friends, helpers and supporters - both paid and voluntary - but all displaying a level of love and care for us that is truly humbling. I am sure each and every one of them has their own opinion and concerns about my well-being, but the bottom line (and I have shared this with a few people) is that my aim is to look after Brenda myself as long as I can and, if I can survive her by long enough to get our affairs in order, then I shall be happy. Now that doesn't mean that I don't want to live on after Brenda finally departs this vale of tears - I would love to be able to stick around and enjoy what remains of my life as much as I can - but I need to make sure that Brenda has been as happy as I can possibly make her before we part and, to put it bluntly, if my life-expectancy suffers then so be it.
The second is a bit more difficult and, although I am perfectly willing to listen to and carefully consider the thoughts of family, friends and helpers, the ultimate decision remains mine but will be a pure judgement call with the inherent possibilities of getting it amazingly right and soul-crushingly wrong.
This is the one I struggle with because it it the one that could, potentially, lead to me arranging for Brenda to go into care at relatively short notice.
Should Brenda be in a home? I don't know.
Part of me says that she must be happier here with me but there is an irksome voice that says "Well, actually, she doesn't know who you are for at least a major part of the time and you are spending a significant amount of time each day managing very mundane things like washing, dressing, feeding and toileting and doing them in a way that a home - a good home with caring, experienced staff - could actually manage better, leaving you to spend more quality time with her".
I have to admit that it is a persuasive argument.
I can easily imagine a scenario where I would go into see Brenda every day to chat or help with meals or maybe even take her out for trips and visits to places and friends and, because the overwhelming stresses of the day-to-day caring have been removed from my shoulders, those times could be really enjoyable for us both.
On the other hand, nobody (even me) knows what is actually going on inside Brenda's head. All I see and experience is the shadow of her former self who is often grumpy, disconnected from the world and those around her and resentful of what she perceives as interfering pains in the neck. But what if, beneath that shell, is the girl I fell in love with but who can no longer communicate her thoughts and emotions? How would 'that' person react to being transplanted to a home and cared for by - initially at least - complete strangers who never knew the vibrant lady she once was.
Should Brenda be in a home? I don't know.
When I have contemplated the question in the past, trying to at least get a handle on how I would make the decision if or when the time came, I always concluded that the critical piece of the puzzle would be whether Brenda knew who I was. The logic is that the quality of the care provided then becomes more important than who actually provides it ie whether it is me or a professional carer.
Of course, the final aspect is how I might feel as the one making that decision to place her in a home. No amount of carefully thought out and logical decision-making will, I am sure, stop me from being wracked with guilt, no matter how unfounded and baseless it may be. If things go well, I'm pretty sure that little voice will say it is just a matter of time and, if they go badly - for whatever reason - there will be the inevitable "told you so". Time alone will heal that wound but, in the meantime, I am left with one lingering question...
Should Brenda be in a home? I don't know. I honestly don't know.