alan60

I’ve just read one of the most touching posts. it was from Alan60. His mum sadly passed away. She had Alzheimers. The love and dedication absolutely shone through.
Not like me at all. My mum also has Alzheimers. There are some days I shake with fear inside as I wonder what dreadfully hurtful comments she’ll say to me today, how volatile she will be and I’ll cower at the torrent of bad language and blasphemy she uses. I’ll collapse emotionally as she won’t let me help her but insists I run myself ragged after my middle-aged capable brother. The list goes on. I’m scared as I can see her fading but I’m also scared she’ll pass away “in bad feeling”. I live with mum and I’m around the most so mum focuses her animosity on me alone so no one can see how bad she really is. but I’m one of three siblings trying to carry things alone and I’m breaking down.
I should be alan60. I should be more caring, patient and dedicated but I’m struggling to be anything like him. It doesn’t help to know these things can be common in Alzheimers. I’m out of my depth. I’ve been snappy with Mum and I am often in tears.
I’m sorry to ramble on but alan60’'s lovely post about how much he did for his precious mum ha’s really made me ponder things and I can see I’m falling so short compared to his standards.
To alan60 I’d like to say I hope life is so, so kind to you in future times. Your lovely mum was so lucky to have such a dedicated son.

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Hi Tina, yes, it was a lovely post by @alan60 called “Struggling to cope with my Mum’s passing”, and I had to comment when I read it as he dedicated his life to looking after his mum. She was so lucky to have him.

Please don’t be too harsh on yourself, looking after someone with Alzheimers can be very challenging, and you have had your own grief and depression to cope with, I hope there is someone to support you and you are not having to do this all on your own, because you need help too. Are there any charities who help people looking after someone with Alzheimers thah have helped you?

Hi Tina. Try not to be too hard on yourself, Everyone’s circumstances are different, and it’s not wise to compare your own life with someone else’s. My wife had dementia at the end and it was very trying. But in Alzheimer’s the person is never themselves. They hurt and are angry with themselves, but because of the nature of the complaint they can never see reason.
It is my belief that my wife left me some time before she died. She was just not there any more.
Hurtful remarks are not just meant for you but the world in general. You just happen to be the closest. You are not ‘falling short’. You are doing your best amongst the most awful circumstances anyone can find themselves in. I found agreeing with my wife when she came out with imaginings was the best way. It’s a mistake I made at first trying to reason with her because I thought she was just being difficult.
We all cope in our own way. You are flogging yourself with guilt when it’s so unnecessary.
I can only imagine the pain you must be in. It’s so so difficult.
Please take care of yourself. Give as much love as possible.
Our thoughts are with you, and come back and talk when you feel the need. Bless you. John.

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thank you so much Abdullah. your kindness is appreciated. sometimes I’m just so utterly overwhelmed. my mum not only has AD but has had debilitating OCD for the last 40 years and this makes everything worse. I did use to post on the Alzheimers UK site - but some of the things posted scared me witless so I stopped. thanks again for your kindness.

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thank you for replying to my post Jonathan. I’ve learned one thing and that is you can’t discuss or bargain with AD or Dementia - the disease always wins. What is so hard is the jekyll and Hyde personality. it was really kind of you to give me your thoughts.

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Hi Tina, I have a little experience, but a very little experience of your situation, and only through friends, not directly. My reason for posting is to express my admiration for your patience. You have quite rightly expressed your admiration for Alan60 but you cannot make a direct comparison to yourself because your situations are different.
Alzheimers is a very cruel disease especially for the carers. Jonathon has said some wise words which I’m sure you appreciate.
Take care, AL x

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Hi Tina, it is so sad to read your mum also has OCD. It is a terrible illness, and it is annoying when people say things like “I am OCD because I like to keep my kitchen clean”, makes me want to scream because it just patronises what real sufferers have to go through. It is understandable why you stopped posting there, have you contacted the charity Dementia Carers Count, maybe they have some advice to help you cope a bit better?

Hello AL2020. Thankyou for replying with your kind words. You are very right I do appreciate Jonathon’s comments and yours and everyone’s. I think I’m struggling more as mum has taken totally against me and is so nice with my two siblings. I know that happens in AD but it’s difficult to experience. Warmest regards to you. I’m sorry as well about your wife. May is not that long since. I hope you are bearing up. Keep well.

Goodness me Abdulla you say the same as me about the OCD. I get so irate as at one time it became almost “trendy” to be a “little bit OCD”. It demeans the illness for all the sufferers of this draining condition. Mum has the “harm to others” element of OCD where she won’t even eat something if she thinks something bad will happen to someone. I don’t think I actually expressed my condolences for your own loss, I am sorry you have suffered a loss and other life difficulties. I remember reading your emotive posts. Thankyou or replying and do take care.

Hello again Jonathan. I’m so sorry about the loss you’ve gone through yourself. As you’ve replied to me in the past on other threads I’m hoping I expressed condolences back then but thought it appropriate just to say it again. Thanks so much for your responses.

Tina please don’t beat yourself up it sounds like your situation is very different to Alan’s. I don’t know much about Alzheimer’s but it seems it presents itself in very different ways. And it sounds like your mums condition is manifesting itself in a different way to Alans mum. It must be very very hard to see her act one way to you and another to your siblings. Even though it’s the disease causing it I can’t imagine how it must make you feel when you are the brunt of it. Are you able to get any outside support. My mum had health anxiety OCD. Where she was convinced she had cancer and would check her self constantly for signs of cancer. Sadly in the end she did get cancer. But her fear of it stopped her from getting early treatment or going for smears/mammograms etc Mind you the drs completely mis diagnosed her but I think if she hadn’t that phobia of cancer she would still be here now.

Mental illness is an awful disease.

Yes. Jooles. OCD (Obsessive Compulsory Disorder), for those who don’t know. I am not being patronising, but everything has to be put into an anagram these days. Half of them I have not got round to understanding yet. :roll_eyes:
Cancerphobia is a real disease and can result in about the worse form of OCD. So many are afraid of going for a diagnosis or treatment. Seeing if the door is locked over and over is a very mild form of OCD. At the other end of the scale it can be debilitating and very upsetting for the patient and those around them. It will always seem odd to someone who has never had it or has no experience of it. ‘Don’t be silly’, ‘Pull yourself together’ are frequent useless and harmful remarks. OCD, when it begins to really disrupt life, needs specialised treatment. Counselling can often help. Health anxiety OCD is a particularly bad form of this problem. The slightest twinge is sure to be cancer! Unless food is prepared by yourself it is always suspect. Since my retirement I am still disturbed by the lack of any understanding about mental illness. People will give you an ‘organ recital’ endlessly about their physical pains, but as soon as you talk about mental illness they clam up. It’s because it can’t be seen, and is unknown and frightens them. If untreated, because most who suffer will not admit they have a problem, it can go on for years. What is sanity? Even that can change from person to person.
Take care all. John.

So sorry to hear your mum has and @Jooles45’s mum had OCD, I have a very close family member who has been unable to work for two decades because of OCD, it really is an awful illness. Jooles and @AL2020 and @Jonathan123 are correct, you cannot compare your situation to Alan’s, he did a great job, he should be admired, how lucky his mum was, but so is yours, you’re doing what you can, please be kind to yourself.

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John I wouldn’t wish it on my worst enemy what mental illness can do to someone. Having witnessed it and also come out the other end of it myself. Sadly my mum was too phobic of anything medical related to ever get help. Bless her heart she has found peace now.

Tina hope you are ok. How is your mum today. Does she have good days?

Hi. Jooles. It’s not my mother I lost but my wife. It’s ok. I get confused often on here and finish up writing to the wrong person. Take care. John.

John I think I was asking Tina how her mum was. But replied to you :rofl::rofl::rofl:. Confused.com. Oh gawd. I’m having an off day. X

thank you for replying to me about my mum jooles. it was very kind of you. im so sorry about your mum. that’s a very cruel outcome. I can’t imagine what it must feel like to know the Dr’s misdiagnosed her. I lost my husband in 2016 and I knew their were NHS failure’s and it does hurt a lot. I’m sorry that happened to you jooles. take care and thanks again for replying to me.

thanks Abdullah. I hope you have a peaceful Sunday. kindest wishes.

Hi. Jooles. An off day!! Tell me about it. I am often doing things and saying to myself ‘now why did I do that’? The fact is we have not totally got round to clear thinking, if we ever will. No worries. John.

your post was really interesting Jonathan 'm often maddened at how celebrities “water down” OCD with their “I’m a little bit OCD”. I remember reading the book “OVERCOMING OCD” and thought goodness me, these are things mum thinks. it was astounding how many twists and turns this OCD takes as jooles has talked about with her mum as well. I suppose I’ve enabled mum’s OCD for many years by repeating a certain phrase she’d have to hear to allay her fears of something “bad” happening. I suppose it’s like anything else isnt it in that you only know it if you’ve experienced it. ignorance is bliss as the saying goes. take care.