I felt heartbroken yesterday because I had a fall out with a person who I honestly had believed was a true friend, but who then (I thought) accused my dementia as being the reason for us not being as close. This then escalated to an argument with my husband, who had sat mutely listening to the discussion between us, not offering me any support at all, not even when it was clear I was right about something. Dementia was used as the excuse for my supposed failure or misjudgment, and I then felt decimated and degraded, and most of all, completely unsupported and unfairly treated. Is it because of having dementia? Is it only my reaction? I have said many times, once you have a diagnosis of dementia, you are ALWAYS wrong. This cold hard fact does not change, speaking out has not made it any better amongst some of my closer family or friends, I am still always wrong. The ignorance of so many is still there, and many people simply refuse to get involved in these conversations, or to talk to me about what it is really like living with dementia. It sits there silently stalking me as an enemy and won’t go away. So am I wrong, am I judging people close to me too harshly? Probably, but I’m not sure how to change that if it is true. My son had accused me recently of giving him books to read in the wrong order, after I had spent absolutely ages trying to get them in the right order for him to read (the characters follow on in each book, so it is important) and yesterday said to me, Hey mum, remember the books I said you’d given me in the wrong order, you were right, and I was wrong! Thank God someone is prepared to let me know I am not always wrong. From a mathematical or scientific perspective, it is not possible to be 100% wrong (or right) all of the time, but it seems most of the time I beat those odds. There are many days that if I didn’t have my blog followers actively getting involved in the harsh reality of my world, I would simply give in to it. I would not have the energy to keep striving to fight this hideous disease, or the energy to try to change the attitudes and treatment of those in aged care settings, or those of us with dementia. So am I reaping what I sow? I do not know, but for sure I will take a damned hard look in the mirror and try to work this and my other questions out.
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Forgot to say-you never know who your true friends are until something bad happens to you-although my grandads have thankfully been true friends all his life-for many merry years before his Alzhiermers. True friends are the ones who are there for you through thick and thin, regardless of distance.
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That is so sad, Kate, and your are fabulous just the way you are, and please don’t worry about mistakes-we all make them💜😢
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💜💜💜
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Kate ……. I can sympathise totally with how you are going ……. I’m really sorry you had to go through it. I went through something similar 14 years ago.
After the diagnosis I was calling people all the time – I wasn’t keeping a record and of course I’d forget that I called XYZ yesterday and call them up today. One friend – who I thought was a good friend – told me to stop calling her ever again because I was calling her too much. With proding from mum I ended up starting a register of phone calls TO and FROM me and I’ve been keeping it every since ….. every year I start up a new page (and it’s really useful since I wouldn’t remember) Your friend may have reacted like that because she doesn’t know what to say …. it might be getting scarey for her to see her friend decline right in front of her so she’s retreating. This is NOT UNCOMMON and you shouldn’t take it personally. Some people use this as their own coping mechanism for thigns that they have trouble facing head on. So don’t take it personally.
And hubby might not have reacted for a few reasons – he might have understood what your friend was saying and just wanted to sit back and let you deal with it. He might have been at a loss for words. also, most men aren’t good with emotional things ….
I’ve suddenly lost all physical energy and mental clarity so I;ll go …. hopefully this will help you. Chin up Kate ……. (easier said than done …..)
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Thank you for your bright ideas, and insights on this and your other message. And rest assured, your email address is safe from public display using the contact page or any other page on my blog (I guess unless it gets hacked??). I like the idea of a message book to record who calls, and who you call; I have previously thought about taking that idea further as I had done for another friend with memory loss by setting up a message book for all visitors to write in, to record when and why they might have visited. To add phone messages to this is a great idea, although perhaps might seem a little like over kill? Not sure yet, but will keep thinking about it. Take care, and spend happy times every day.
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How frustrating. Maybe hubby’s lack of vocal support was because he didn’t think you needed it. That is, he thinks you are capable of standing up for yourself now, just as you always have been. Just an idea. (Pete, if you’re reading, feel free to correct me if I’m off base!)
I love that you are writing about these moments. I saw my Pa get extremely frustrated when he was sick but because of how dementia effected him, soon he had no way to translate his thoughts into words. Whilst your experiences would obviously have their differences, I suspect Pa felt like this often. Your insights are invaluable.
There were some people in my Pa’s life who just didn’t seem to know how to engage with him once his illness progressed to a certain point, but there were lots of incredible people who supported him too. No one likes to be treated like they’re incapable or less of a person.
You’re an incredible woman, Kate, and I take my proverbial hat off to you!
Love, Eliza xxx
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Hello darling friend, thank you for your insights and love. Yes, I am sure your Pa was extremely frustrated, and unbelievably sad some friends could not cope once his illness progressed. But, as you say, there were still lots of incredible people who did support him, as there are for me. Your letter to him would have been one of the most wonderful things he would have ever received, not just in old age, but in his whole life. Much love, and keep up the great blogging. Love, Kate xx
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The fact that you are heartbroken about the arguement with your friend seems the most important thing, not who was right or wrong. So tell your friend that you are heartbroken, put differences to one side for the moment.
With the diferences, I would write it up, under different headings to try to tease out the critical aspect. What was the subject of the difference, what is your recollection of what was said, ie your recollection of the facts; how did you interprete that; how did you feel about it; what did you expect the outcome to be, as opposed to what actually occurred.
This type of assesment is never easy, and dementia may make it impossible.
Perhaps if you know in advance of having an important conversation, you need to have a portable recorder? Maybe you could use it all the time, wiping out the vast majority as you go as the usual normality of mundane life!
Kate – mundane life- no I must be thinking of someone else! 🙂
Paul
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Paul, yours is such a wise reply. Thank you once again. The idea to just let my friend know I feel heartbroken is truly beautiful; the idea to critically assess and review was already underway last night. And I agree, to have known in advance would have been a good thing, but it was an unexpected visit, at a time when I am already tired at the end of the day, and had a terrible toothache following some dental work. As you would know, sometimes these things just happen. I am sure the universe decided it needed to happen, and now is waiting for me to grow a bit more because of the experience! I’ve also en toying with the idea of a portable recorder, or some kind of ‘chip’ that will allow me to recall conversations, and a heading to the security shop next week! It is a bit challenging to others to turn on a recorder I have found. Anyway, all the best and back to my mundane life! Kate
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I’m glad you refer to “the universe” and not “God”. But I’m going to get into another beliefs argument here and it’s not the place.
And what’s this about reaping what you sow? Nobody deserves to reap dementia and all the pain related to it, no matter what they’ve sown.
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Hi there. Well, sometimes I refer to the Universe, and sometimes God. But you see, I believe it is the same as football, same God (or Universal belief in something spiritual) and just a different Club! But no more about that now, as I have a whole blog brewing on just that topic!! And as far as your comment about nobody deserving dementia, no matter what they have sown, my words here will never be able to thank you enough. It is only the tears of relief that have sprung forth that would truly show you how much YOUR words have meant, right this very minute. Thank you from the bottom of my heart. KS xx
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Just because you cant remember things and you may have changed because of the dementia, one thing I know for sure is the ability to remember the smallest details that us as carers or family dont even register. My husband(EOD) can remember the slight details and often tells me things which I doubt to be true. But to my amazement he is 100% correct and i have no hesitation to apologise profusely. In my frustration I often refer to these moments as him being ‘anal’ but I think that as dementia robs him of things that I feel are important he is a mine field of knowledge of all things that I feel are small and irrelevant. I think the hardest things for family and carers to realise that our loved ones have changed due to the disease and not to compare how ‘they used to be’ but accept them for ‘how they are now’. That is the hardest thing for ME to remember!!No one likes change but when it is thrust upon us we kick and struggle. My doctor always tells me that I must not take any behavour my husband displays towards me as ‘personal’, I try but it is not easy my emotions get in the way.
I am so sorry for your pain in this situation you must have felt so defenceless and alone when you had no one to support you. Thank you for your courage and openess in starting your blog. It is an excellent way of understanding dementia from your side.
Just take one day at a time because really today is all we have. Yesterday has gone and can not be changed and tomorrow who knows!!!!
Kindest regards dear Kate
Sue
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Hi Sue, thank you for your lovely words from a carers perspective. I do know it is very hard on those around me who love me to cope with what is happening, both at the emotional level and the physical one. I also know they are trying to the best of their ability. As I say in one of my articles, the changes brought on by dementia are relentless! My reply now to that comment is that everyone is changing, all the time, not just those of us with dementia. I am starting to notice that the changes of the ones with dementia are the only ones ever talked about negatively (in organisations, the literature, etc., not here on my blog), whereas the changes imposed on the carers is carefully considered. I am trying desperately to put something in writing about it, from the perspective of someone with dementia. As you say, one day at a time. Best wishes, Kate
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I hate it when my husband doesn’t think I’m right 100% of the time (which is usually at the worst times), I can’t imagine what it would be like to have the added variable of dimentia involved in his thinking.
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