I Don't Know...

[Laurence]

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.

 

[garnuft]

I don't know either, Laurence but I do know Brenda is lucky to be loved by you and each night you spend together is another step along the winding path you share.

I think you will know the answer to your question if you are able to finally answer it, until then you soldier on.

I fear your 'soul' will be crushed whatever the outcome but making the right choices for the right reasons will protect you from guilt too onerous to bear.

Love is a many splendored thing and while you may not feel it, you ARE splendid.

Best wishes to you and your Brenda. x

 

[Laurence]

Thanks Garnuft - you are very kind.

 

[Benrese]

Hi Laurence,

I actually had an audible and very deep sigh after reading "you". Gosh, it feels like a very big mountain to climb, doesn't it?

To be honest, though-it sounds to me like you are slowly and very thoughtfully coming to the truth. Yours and Brenda's truth.

You've done a stellar job with what you two have been handed. If Brenda is still "in there", then she knows you already and there is nothing you need to explain to her. Yes, you promised to take care of each other, to look after each other. But what shape that takes as these days move on, can mean many things.

I think if you keep on asking the questions and chipping your way through, you will find the answer, glimmering ever so slightly at the bottom of all those deep feelings of love and loyalty.

Sometimes we have to let go to a degree, to best love our dear ones.

Sounds like you and Brenda had a lovely time together. This is just a new chapter.

Do take care,

 

[grannyannie]

I don't know

When my Darling Mum in Law developed Vascular Dementia and Alzheimer's we kept her at home as long as we possibly could. Even when she no longer recognised it despite living there for over 60 years.
But in the end it was best for her to go into a home, we started off with respite care during the day so she got used to the staff and other ladies.
When she needed to go in full time she was settled and contented , we could visit when ever we liked.
Mums condition was complicated by cancer which took her in the end , but even then the home owner sat up all night holding her hand.
We realise we were so fortunate finding a family run home and if my Hubby needs to go in the future I would want him to go there.
I think it is one of the hardest decisions we have to make but isn't finding somewhere that's best for her be " looking after her " ? it doesn't mean you love her any less, in fact love radiates from your post
Take care

 

[gamleman]

Love and prayer

I have read many items on Talking Point and have never responded, it was enough to know that i was not on my own with certain things. Yours is the big question Laurence, and one on which I have been dwelling for a while, although I think that I am not as far on the journey as your self. Like you i had no intention of placing my wife in a home, but now that she does not know me most of the time, the thought does enter my head, but I think that although she does not know my name etc, she knows at some level that she loves me and that I love her. She is happy at home, I am the one with the problem. Trying to cope with the frustrations of looking after someone wrecked by Alzheimer's Disease is the most difficult part of my life up until now. I do not have any answers. Like you I accept that this illness is shortening my life. I intend to go on for as long as I possibly can unless or until I become too stressed or too ill to cope.I pray every day for help and guidance. I try and tell myself that I need to look at things differently, react differently, deal with things differently. I am always behind the curve, the disease is ahead of me. I think that i have a handle on things, then it all changes again. But she deserves my love and my care, she has done no wrong. She still likes to be cuddled and hugged. I do need time and space to try and regenerate my energies, but I never get enough. From your comment your love shines through. I do not think that my post is of much help to you, except to let you know that you are not on your own. You will know when you can not take things any more or when, as you say, she would be better off in a good care home when you could spend quality time with her. But what is quality time when dealing with dementia? Is there such a thing? The whole illness is horrendous. We end up playing God with the life of someone we love. I just think of the love which we share and which binds us together. She is frigthened and needs me. I

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.

 

[truth24]

Having, unfortunately been in your positions, I can confirm as will other TPers, that it is the most difficult decision of your life. I too had determined to keep my OH with me to the bitter end as had most of us. It was only with the persuasion of my family and the SS that I had to admit that I could no longer give him the care he needed, even with the help of outside agencies. My loved one became doubly incontinent and enjoyed playing with his faeces. I became particularly adept at tracing his hidden gifts. However with this came the aversion to personal care and every day became a battleground with me trying to get him into the bathroom to wash/shower, dress him, etc, and the same at night to change his disposables and get PJs on. Consequently I became his worst enemy and he refused to talk to me other than aggressively, shutting himself away in a bedroom. Crunch time came when he lashed out at the carers sent in by SS to assist me in these tasks, and the decision was made.

In all honesty, I think he was very miserable for probably the first 3 months, at least with me as he ignored me on most of my visits and the guilt monster became almost too hard to bear. HOWEVER the change in him recently has been quite amazing. He seems contented and happy, is now usually pleased to see me and has returned to holding my hand when we have a little walk around, accepting a kiss and even sometimes a cuddle. He is well cared for, well fed and treated with great affection by his carers. They too have problems with his personal care but are trained to handle them in teams of 2 or even 3 sometimes, so how did I manage by myself! I still miss his presence and would love to have him home. The guilt has lessened somewhat but I now accept that he is better with caring professionals than spending time with me getting increasingly more unhappy and isolated.

Apologies for the long post. It is just an attempt to explain why and at what stage my decision was made.

With very best wishes to you all in this difficult situation.

Sent from my GT-N5110

 

[pamann]

Hello truth24
Having read Laurence's post, l am in his position, l feel a will carry on until the end but know l will be unable to do that, having just read your post! That would be the time for me to consider putting my hubby into a CH. l have learnt alot from you and others on this wonderful forum, many thanks ♡♡♡

 

[Jinx]

My OH is not as far along this journey, he still knows me and for the most part copes with his own personal care with prompting. However, as you say the question cloud is there and I was discussing this with a retired doctor friend not long ago. She turned it round and said would the man I married, if he knew what was happening to him, want me to care for him and, if the shoe were on the other foot, would I want him to give up everything to care for me. The answer to the first is 'I don't know' we never had that conversation but emphatically the answer to the second from me would be "put me in a home". The 'contented dementia' book suggests that dementia sufferers are better looked after in care with others in a similar position.

It must be the hardest decision we have to make and, whilst in the wee small hours when all I want is sleep and OH is on his rambles round the house, the prospect of permanent care seems attractive by the time the bright light of day has dawned the idea recedes back into the cloud on the horizon and we get on with another day.

Sorry another reply that doesn't really help with your own decision, but I do feel for you and all the mental turmoil you are going through.


Sent from my iPad using Talking Point

 

[Laurence]

Thanks everyone for your very caring replies. You are all absolutely right in the things you say - there is no 'right' or 'wrong' answer, just the best answer we can go with at the time. My best wishes and prayers are with everyone in this position.

 

[Scarlett123]

Thanks everyone for your very caring replies. You are all absolutely right in the things you say - there is no 'right' or 'wrong' answer, just the best answer we can go with at the time. My best wishes and prayers are with everyone in this position.

I coped as best as I could for over a decade, but there came a forked road in my life, and I took the Respite Care path, followed by Permanent Care. John was there for 7 months, but there is no hard and fast rule to all this. He might have been there for 7 years.

I've written in the past that when I took my marriage vows, nearly 50 years ago, I too said "in sickness and in health", but the "sickness" bit had me imagining myself with a cool flannel to apply to the (slightly) fevered brow of my beloved.

I certainly wasn't thinking of double incontinence, violence and conversation made up of gobbledygoop with someone who didn't know me. It's a hard, hard decision to make, for which there is no easy answer, or a definitive one, but I hope that if and when you meet your crossroads, that you'll think what your lovely Brenda would want you to do for the best and that this will help you.

TP has proved to be my salvation, both when I was a carer and since John died, and I hope that you too find comfort in the replies, even if you don't find the answers.

 

[Lilac Blossom]

It's true, there is no "right" or "wrong" answer - the way I see it, the decision is made not by us but by this awful dementia/alzheimers which takes over and steals everything that is precious from us and our loved ones.

I care for hubby at home but recognise that we are very close to that crossroad.

Discovering TP has already helped me - I wish I come here sooner.

 

[Laurence]

Thanks Scarlett123

 

[Laurence]

Thanks Lilacblossom

 

[WIFE]

Laurence - with you all the way as you come to the hardest decision any of us with loved ones in care have had to make. The decision was taken out of my hands by the medical profession and although I would have only wanted my dear boy home with me, knew that he would be having the right care in the Nursing Home. Still broke my heart but we soldiered through ten months of daily visits and making the best of it until the final outcome.

I am holding your hand tight - you must follow your heart and instinct for your wife when you finally make the decision one way or the other. Do not listen to those who condemn, criticise, or try to influence you. We here on TP who have experienced the agonies know better. Take care of YOURSELF as well. Thinking of you WIFE

 

[Laurence]

Thank you WIFE. I appreciate your kind words.

 

[suzc5hg90]

Laurence, There are some things I can relate to in your post. The question which I keep coming back to is What is going on in their head?

We have different scenarios. In my case it's my Aunt who we're trying to help.
Everything sort of snowballed when my Uncle passed away three months ago. My Aunt continued to live in the flat for another three weeks. We started to realise that she could not live on her own. She used to be a very independent person but she had changed. There was a blank expression that I had not seen before. She was losing her medicine/money and becoming panicky/anxious. I became more concerned when she said that people were coming into the flat at night and taking things. Eventually she phoned the police and said she was trapped in her office. She was in hospital through all of December.

In mid January my Aunt went into a care home. She has settled in very well and enjoys the company of the other residents and staff. She no longer has to worry about cooking her meals, where her medicines are, washing her clothes and paying her bills. I don't think that she really knows where she is to be honest, but the main thing is that she is content and safe. Even though she is confused I know that she would tell us if she wasn't happy there. She has her own room with a television and bathroom which gives her that bit more independence that she needs.

I hope that my words can help.

 

[Laurence]

Thanks suzc5hg90. It is always useful to hear other people's experiences. Thanks.

 

[suzc5hg90]

Hi Laurence, Hope that you gain something from the support on here.
My Aunt's friend is struggling to look after her husband who has Alzheimer's and they are both in their late 80's. They have been married for just over 60 years. She tries to look after him, mostly by herself and can only leave him for very short amounts of time.
It helps to know that there are others out there who are going through a similar experience. Best wishes suz

 

[Laurence]

Once again - thank you everyone.


Sent from my iPad using Talking Point