There is this wonderful site by Ann Napoletan, who was a carer for her mother with Dementia. The site is packed full of information on the disease. Who can help, support for carers, support for those with the disease; what is Alzheimer’s with signposts to tests to check yourself.
One thing that struck me when I was browsing through it was that I need to address the fact that I have a reluctance to ‘acknowledge’ the trauma of caring for someone with dementia.
This is a tough thing for me to write about because I risk not meeting expectations, and of being too honest with my thoughts.
At first I thought it was a simple case of me feeling somehow angry that they spoke so loudly about the trauma of being a carer, (which I was told was my own coping mechanism), but then that made me feel really guilty. Inside my head is a chamber holding contradicting thoughts each trying to have their say; caring vs living with the disease. Too much ‘shouting’ does not allow me to sort out the mess of emotions that make me feel the way I do about it. It would be so easy to simply shut down without processing any of it and become the ‘patient with the disease’ mindless, and accepting of the confusion, blocking any meaningful process of mental activity, blocking out the effect of my disease will have on my family and friends.
What I feel when I read about the torment suffered by carers is: irritation and anger:
Question: Why?
Answer: How dare they shout about a disease which they don’t have. They can get support from their own groups, because they are competent enough to seek them out and have their moan/talk about their guilt of moaning/loss of life outside of caring etc. They are not facing a slow lingering death with confusion but with the knowledge of being aware of it happening.
Comment: Is that fair of me? OF COURSE IT’S NOT in fact it is a hideous thing for me to say.
Independence is something most of us fight hard for. Meeting friends outside of the home, choosing our own actions; what to wear, what to say, who to say it to. What this disease does is end all of that but slowly and with the knowledge it is being lost. Fighting hard to keep it can delay it but not stop it. Being aware that you are the cause of your loved one’s change to their lifestyle can bring on the most heart wrenching guilt – sorry I never meant this to happen forgive me. Watching someone you love battling with; trying to come to terms this change, with their future as a carer, again causes guilt.
This is still selfish of me to write this because look..somehow I have still not acknowledged the pain of being a carer. The life you wanted to lead has been diverted to a different path and certainly not one thats easy or pleasant to walk. You want to run away from it, because you know once you take that first step in acknowledging the journey you are about to begin, your life will never be the same.
See, I have done it again – spoken for you without addressing your pain. Someday you will speak for me, guessing what it is I need to say.
What I am trying to say is that, I am scared to read your pain about how emotionally draining it is caring for loved ones, I want to empathise, but struggle to because it is too painful for me to think that I may cause that one day. I would never willingly cause anyone so much suffering but it seems I will. So, if I seem self centred I apologise but right now I cannot cope mentally with how I am going to change your life, the loss you may feel of a loved one or the lost promise of your own active future.
But, I recognise that this is my coping strategy, please forgive me.
Of course I can’t leave it like that because I will also acknowledge that there will be bright times when I say something that will make you laugh that I will be able to join in with that. Times when our love will shine through and be comforting. Times when both of us will feel the best we can that day.
Handbagwarrior; verbal ramblings 
I want to reassure you that it’s not you (causing your Carer/Partner/Husband pain).
That’s really important for you to understand.
It’s the Alzheimers Disease that is emotionally draining, not you. Carers care, because they love and care for you. At times they may find it a wee bit restricting being a Carer, but I can assure you that ultimately, that is ‘normal’ for anyone having restrictions in life…… any kind of restrictions. I see Carers taking on that role because they genuinely want to help you. Deep down they understand that it’s not your fault you acquired this deteriorating health condition.
They may get a little tired of being constantly ‘on watch’ down the track. But having friends or family who can step in and give the Carer a respite is helpful.
I follow a wonderful blog filled with quotes and reassuring affirmations of Living Mindfully and other (mainly) Buddhist Words of Wisdom.
If you can cope with following this Blog, I feel you will find it very positive and uplifting. If you’re not interested in following the blog, you might like to bookmark it for the occasional glance or another time when you are able to read some of the posts. I might add I have read the (rare) post which is meaningless to me on this site, but there you go, not everyone likes EVERY Blogger’s posts.
http://mindfulbalance.org
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Oh Vicki you always know the right things to say 🙂 thank you. I have looked at the mindful balance post. Indeed there are some very insightful and reassuring quotes there. I shall dip be dipping into it sometime.
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This is a really thought provoking post which has given me much to mull over. I had never considered the person with dementia feeling guilty about a) having the illness and b) about needing care. As a carer (for my dad) I felt guilty for not being there for him sooner, for sometimes being impatient – maybe we are programmed to feel guilt whatever we do in life? When my mum had cancer she felt guilty – not so much at having the illness but whenever she read of other people with cancer jumping out of planes or climbing mountains to raise funds she felt guilt at not being able to do these things.
Now I’m wondering dad he felt guilty about needing care. But, maybe guilt is gender-based and only women are programmed to experience it at the drop of a hat. Sometimes, in the earlier stages when he was aware of what was happening he used to complain it wasn’t fair that other people, much older than him, had “retained all their faculties”. Becasue he had mostly vascular dementia he soon seemed to forget – but maybe he didn’t and was not able to articulate what he felt?
I fully understand you not wanting to hear from carers about what a tough time they are having when they don’t have to experience the illness for themselves. I think you are entitled to feel angry and bitter at their moaning.
I will have to go away and think about this more. I’m aware that my comment is muddled and not saying quite what I want to say.
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Your comment is very interesting Mary, thank you for sharing with me. I really believe that we all do the best we can in circumstances we wish were different, and that is ‘good-enough’. I realise that being a carer for someone with dementia is soul-destroying. Another person wrote (I can’t remember who wrote it, sorry) It is not one person who has dementia, it is the whole family who live with it. Guilt is a wasted emotions….(I had forgotten that one!)
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You write beautifully about this difficult topic. Let me try and share my views from a carer’s perspective.
I don’t know if my mother feels guilty about needing care. But she says “Thank you” at every opportunity.
Thank you (for my medicine).
Thank you (for taking me out).
Thank you (for helping me dress).
She simply accepts the help and thanks us for it. And I accept her thanks.
That’s just the way things are. Someone needs caring, and someone provides.
So please don’t feel guilty when you need more assistance. Accept the gifts of caring as they are proffered. It makes us carers feel good too.
Remember carers have to learn to deal with their own emotional issues and blogging helps them clarify their own feelings. You’re sensitive to their expressions of pain, but you are not responsible for how they feel.
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I take solace in your words, thank you. Does guilt go with being grateful I wonder? Now you have me thinking – I love the positive in the word/sound/meaning of grateful. This is what I love about people we connect with through our blogs. You have given me something really positive to replace my guilt feelings. I will try anyway. 🙂
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❤ thank you
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Thank you for reblogging my post, means a lot to me that it may be of use to read. 🙂
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Thank you for writing on this topic. It makes the rest of us think about our perspective. Alzheimer’s is a terrible disease and we all have no chiice but to react to it as best we can. We, the carers, and those we care for. God bless you.
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Nicely said, thank you 🙂
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When I was caring for my mother I would often look into her eyes and see anguish because things were changing and neither of us could do a thing about it. I knew she was in there somewhere I just didn’t know what she was capable of comprehending. In time I learned to not say some things around her as if she was totally competent. I would only say nice things and not express my frustrations.
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It is a terrible disease which we are still learning about. I think that she would have appreciated your kindness to her. When communication is no longer possible it is hard to know how much conversation can be ‘processed’ meaningfully. I hope when my time comes someone will say nice things to me as well. 🙂
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Thank you for your kind words. I do know she loved chocolate till almost the end and I gave it to her every chance I got. I pray that you get those kind words and actions now and onward.
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Reblogged this on Going Gentle Into That Good Night and commented:
This is an excellent post…many of the things that I talk about in with regard to how we as caregivers respond to our loved ones in “You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” are beautifully and eloquently stated here by someone who has Alzheimer’s Disease.
You know, for me, one of the greatest blessings in my life was the opportunity to be the caregiver for my mom. I got frustrated, at times, before I realized what was wrong, but the frustration was not with my mom, but with me because I didn’t know how to make things better for her.
But I didn’t take that frustration out on my mom. Instead, it provoked me to be even more protective, more gentle, more kind, more caring, and more loving toward her. Intuitively, I knew she was scared and because I knew how fear manifested itself with her, I did my best to make sure that she knew that she was safe and comfortable and that I would never leave her.
I also made sure that her dignity and independence (one of the chapters I cover in-depth in this book) were kept intact (independence was only modified when safety was an issue, but even then I was very careful to let Mom have as much as she could handle) to the end of her life.
The way I looked at caregiving was that I was fulfilling the circle of life for my mom. She did the same things for me when I could do nothing for myself, when I was helpless, completely dependent, kept her up all hours of the night, and was finicky and fussy. She didn’t leave me. She didn’t complain. She didn’t walk away. She did everything she could to show me love, care, and comfort.
And that she deserved from me when the time came that the roles were reversed.
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Thank you. You are truly a beautiful person to have loved your mother till the end with so much selfless care. It has brought a tear to my eye reading your comment.
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An individual’s response to trying situations is neither right nor wrong. It just is and is unique to the individual. No one can judge that uniqueness, not even the person who wears that uniqueness. Certainly the carer, and the one cared for, experience on-the-job training. We do the best we can with what we’ve been given.
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Thanks for your comment. Forgive me if I have not read your comment correctly… I agree, everyone does the best they can and because we (people with dementia, and people without) are unique each way to be together is different. However, I do believe there is a need to people without dementia to understand what it is, so that things can be better for both. So much better when instead of someone with dementia gets frustrated and angry because the person with them cannot understand they may simply be in pain, or thirsty but cannot communicate that. Everyone can build on what they have been given to get a more comfortable life between them.
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It looks like we’re on the same page. Each of us can learn from each other. When we listen to what is said – or not said as the case may be – we can be a more effective support for each other. Blessings to you.
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So many have commented on this post, perhaps because you touch the beating heart of the great secret–that whether the person coming to terms with the diagnosis and the symptoms of Alzheimer’s or the person thrust unprepared into the role of caregiver, we all feel such mixed emotions of guilt, anger, generosity, fear, love, empathy, and loss of control over our futures….Your capacity to articulate and your self-awareness are amazing–and raise in me another embarrassing emotion–a kind of jealousy as in “why can’t my husband be like her?”. Of course the answer is obvious: “because he is like him.” Your entry reminds me to keep in mind what he must be going through
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I read this with great interest Alice, what does make us different? I lived alone with my daughter for 27 years until marrying again in 2011 and up until that time I did everything myself and never learnt to rely on anyone, only having my daughter to worry about. My expectations of my husband is less, I still try and rely on myself. He never speaks of this disease, ever, and probably would not want to talk about how he copes with it or not. I think this makes a difference to how I am.
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Thank you for writing this. My mom has Alzheimer’s, and as you say, I have no idea what she is going through. I did a lot of reading and research and try to always be “in the moment” with her. You have given me a new perspective on things.
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It is never easy to understand this disease Erica, you are very caring to have done so much reading and research. It may help to look at some videos made by people with dementia – http://www.dementiamentors.com . There is so much information about what it is like to live with dementia it helps me a lot. The latest videos are the 4 sign language ones to help with communication.
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That is so true. Thank you for sharing these videos. You are a very courageous person.
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It is so wonderful to read a coherent and clear voice on this – I do understand that no one would ever want to be in a position that they cause pain to others, but struggle with MIL’s selfishness and obliviousness towards us and the efforts we go to, even though logically I know I am holding her to a far higher standard than she is now capable of ever reaching… Still don’t know whether she knows on some level, or is totally unaware – either way, those few times she does express gratitude are golden to me…
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I cannot imagine how hard it must be for you. I do know that some dementia’s change behaviour beyond recognition, but if it was there to begin with then it is part of their personality. I do hope that she really does appreciate your care. Take those precious moments and hold on to them. 🙂
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One of the most important qualities anyone can display is honesty. I always look forward to reading your thoughts because you are so honest. Thank you for that.
When Mum was diagnosed almost six years ago, I knew that the hardest time for her would, in some ways, be the weeks, months perhaps years when she was aware of what was going to happen. For a long time now, it’s been hard to gauge her awareness. She seems very accepting of her life as it is now and for that I’m very thankful. At times, when she seems to reject a present I’ve bought her, or falls asleep when I’m with her, I can’t help but feel sad and maybe frustrated. But that sadness and frustration is never directed at her. As “Going Gentle into that Good Night” says, we do for parents what they did for us when we were unable to do it for ourselves.
I’m grateful for what Mum and I still have together – the laughter and the singing, the times when we hold hands and don’t need words.
You will never cause anyone suffering – dementia will.
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Thank you. You Mum sounds quite content with how her life is. My own mother is at the end of her journey in a home with Vascular Dementia (I live too far away to visit) and my father tells me she no longer complains, accepting the wonderful care she gets from the home. She still has lucid times so he knows she is aware of her demise. Having been a ‘grumbly’ sort of person, this is the best I have ever known her!
You sound like you and your mother have a loving close relationship which I admire.
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Thank you so much for mentioning my blog in your post. I have read your posts and am inspired by what you write. You yourself have a wonderful honesty to your words that I identify with. 🙂
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