Does living alone rid me of the guilt?

The guilt that comes with a diagnosis of dementia reared it’s ugly head again last week. I sat with 2 male playmates, both married, one living with dementia, one the carer for his wife.

They were talking about their situation if the carer had to go into hospital. The person living with dementia felt huge guilt as his wife was due to go in for an operation but was worried about how her husband would cope, who would care for him? She was considering cancelling the operation as they could find no support services to help. The playmate believed he could cope but knew he may forget to do things and was trying to reassure his wife but the over arching emotion was one of immense guilt at having to put his wife through that thought process when she had enough on her plate with an operation…..

The other, the carer, had never thought of the situation where he would have to go into hospital…..who would take care of his wife? She needed support and wouldn’t cope on her own for a long period. Once again, the tears welled up, the immense fear, the stress of a simple thought.

It’s often been said that carers ‘suffer’ and people with dementia try and  ‘live’. There comes a time when we (people with dementia)  become oblivious to the situation around us. It’s then that the hardest times must inevitably be for those caring. At least, before we ‘go over the edge’ into someone reliant on others, we can talk to our loved ones, comfort where we can. But when we’re no longer capable of seeing the situation in all it’s glory, the emotional stress is in the sole ownership of those who care.

So what about people like me who live alone? Well I still have guilt, the guilt of impinging on my daughters lives unnecessarily. Of having to rely on them to do some things for me when I know how busy they are. I try not to ask as I want them to live their lives.I’ve always told them, I don’t want them to be my ‘carer’, I want them to remain my daughter at all times…..should I still be around when I ‘need care’, then I’ll allow others to do that… reluctantly.

But I don’t have the guilt, of being with someone I married, someone I hoped to share my life with into old age, of them seeing me deteriorate, of becoming reliant on their existence….I see that as an advantage of living alone. I can repeat things to myself all day long and not annoy me. I can sit in silence if I want to without feeling guilty about not engaging in conversation. I can get things wrong in my own home and have no one worry about what I’ve done………I don’t have that guilt…

One story sticks in my mind. Of being sat with a couple somewhere. The husband had dementia. The wife was saying how she would never see her grandchildren again as they now lived in America. It was ‘his fault’. The guilt on the mans face as he lowered his head in shame, was tragic and still stays with me.

Sadly we have no control over dementia. We can do everything we can to slow the deterioration, as I hope I’m doing by doing all I do, but the guilt that dementia brings is the cruelest guilt as there’s nothing we can do about it.

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

29 thoughts on “Does living alone rid me of the guilt?

  1. Wendy, you have summed this up perfectly. The “guilt” issues are there on all sides. My mum would worry about me and how much I was doing for her so she could continue to live in her own home. I worried constantly about my mum and the “what ifs”. What if I’m poorly, what will we do if things deteriorate for mum and I can’t manage. My husband, my daughter and son worried about me and did all they could to help. The consolation is it’s a measure of how much we love each other and simply wouldn’t want to be the folks that don’t care xx

    Liked by 1 person

  2. My husband was diagnosed with dementia at the age of 58 and I have had to give up work to care for him however I know that if our situations were reversed he would do exactly the same for me and I would hope that I would never, ever make him feel guilty about the things we can no longer do. In fact when my son and grandson come to stay so that I can have a night away we make it into a ‘boys weekend’ so that it’s something to look forward to rather than him feeling it’s a chore for them. I don’t always get things right in my care for him but it’s the one thing I try my absolute hardest to achieve, to make him feel he’s not a burden.

    Liked by 5 people

  3. Human beings are sometimes so strange. Maybe we should feel guilty if we have done something wrong, but not for something that is completely out of our control. I think that goes for all of us, but more especially for someone with a condition they never asked for, and there are many such conditions. Probably that wife was frustrated. But for her husband to feel guilt is so sad.
    Wendy I do think you are helping to spread the word about how to live with dementia, and you must have reached and informed many people since your diagnosis. (I tell lots of people about you and recommend your book.) I’m sure you have helped many people.

    Liked by 1 person

  4. Again Wendy you express so clearly the problems encountered by those living with dementia. Your empathy is remarkable and a very important message to those of us outside the situation. Xxx

    Liked by 1 person

  5. Wendy,
    Without doubt you are the bravest person I’ve ever heard of! I’m convinced you were put on this earth to support, encourage and help the millions touched by dementia. Thank you SO much for today’s blog and for all you are doing. It helps us enormously and is making life more understandable for many.
    In your darkest, foggiest days, hold onto the fact that you are propping up the rest of us!
    Thank you, Brave Heart!

    Liked by 2 people

  6. You are so honest with your reflections wendy getting to the heart of the difficulties facing everyone who has to deal and live with dementia.
    There is no sugar coating but you make me want to be better at supporting people and thinking of ways we can work together to improve quality of life. Thank you.

    Liked by 3 people

  7. Thank Wendy, I follow your blog, am inspired by your thoughts. And then reading today’s blog my initial reaction is “ SPOT ON”. Had to tell you. Have a good night xx

    Liked by 1 person

  8. Guilt seems to follow dementia around. Living alone, like you, gives me a level of freedom from guilt, as I don’t impinge on the life of a partner, however, my guilt sits around my daughter and three grandsons. The boys all have autism and I have always supported my daughter to care for them. I have been clear that my daughter must never try to take me on, in addition to the boys, but the axe hanging over our heads, as I decline is that it gets harder and harder for me to support her and the children and there will come a time, when I will not be able to help at all. I pretend to myself that I will be able to keep going until they leave school, but at 8, 10 and 13 in reality, it is not likely and the guilt is dreadful!!!!

    Liked by 1 person

  9. Maybe that’s why marriage vows include the words, “for better, for worse … in sickness and in health … to love and to cherish, till death do us part”. Perhaps in our time with an abundance of opportunities we have become too focused on personal fulfilment so as to forget what happiness there is in expressing loyalty and kindness with dignity in the family setting, however unequal the load may become in terms of shouldering or transferring responsibility.
    Yes there is frustration, sadness, anger and guilt as you say, and the full gamut of emotions to face and deal with and this is challenging for everyone but there is also tenderness and sublime moments to be had if we don’t lose sight of what is truly valid and weighty and intrinsically good in life, Why should we presume that this has to stop because a loved one becomes ill or think only in terms of our burdening others and impinging on their lives? Life is not a picnic and neither can we protect our loved ones from situations that touch their lives and when it does do we not become better people for facing it and doing our best to help? It’s hard but we have to let others have their chance to express love and not imagine it must only become a chore for them. Allowing others to do for us may be a very difficult thing to come to terms with but in doing so is that not a life lesson too?
    Sorry if I’ve expressed myself clumsily here but I do feel strongly there are no bail out clauses for family and friends when the going gets rough and I would not want to pushed out either in the mistaken view that it will be better had I not be made to endure what is coming. The carer has the right to care too. The principle of,’ in sickness and in health’ is surely one of the highest among us that binds us together in the life experience. None of us are perfect so as never to feel overwhelmed at times but we get renewed from day to day and we can carry on I think.

    Liked by 1 person

  10. Thank you for sharing your world. It helps me as a carer for my mother who is 86 and has dementia. I’m guessing she’s in the latter part of stage 5. I appreciate your insights and have picked up a few tips from your writings! 🙂

    Liked by 1 person

  11. O Wendy, please don’t feel racked with guilt unnecessarily about the amount of time and effort your daughters put in to support you!
    I cared for both my parents in their old age and infirmity, and loved to do so. We had good days and bad days, days when patience and tolerance were required, for sure. But… we also had very happy moments, times of reminiscing, and so much laughter,humour and love.
    Once, I took my dear mother out for a walk, and she kept slipping out of her shoes. When we looked down, she was wearing my fathers shoes! We laughed so much, Mums false teeth fell out! 🙂 When she could no longer articulate her affection, she held my hand-I could have sat there for ever!
    So many lovely memories, which I would not have had if I’d not cared for them.
    Don’t deny your daughters the opportunity of loving you in which ever way they can, if that’s what you all want, and certainly don’t feel guilty!

    Liked by 1 person

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