I wish I could stop crying ....

Share information, support and advice on all aspects of caring.
I've never been a particularly emotional person, but this dementia thing is so heartbreaking to watch. I had a good bawl last night after I put mum to bed, but this morning still just want to cry, cry and cry. I hate this disease. Why did it have to happen to my mum? She's had a few sudden, severe headaches recently which have coincided with a sudden change in her cognition. There it is, the dementia. I can see it happening right in front of my eyes. To my poor, poor mum. Why? What did she do to deserve this hideous ending to her life? Each night I go to bed and say a prayer that God takes her in the night in her sleep so she doesn't have to suffer this thing any longer.

And then I think about all the other people in the world suffering this illness and those going through what I'm going through and I want to weep for them as well. Why does life have to be so horrid at times?

I've put off calling the counselling people that I have been referred to (I've never needed counselling in my life!), but I think I might just call them tomorrow. Maybe if I can do some of my crying there, then I may do less at home?

Hopefully tomorrow I will feel a bit stronger ...
Sending cyber hugs to you (((Maz)))).

I think having an outlet for your sadness and a chance to express all those negative feelings in a regular counselling session sounds like a good coping strategy.

Although not directly related to the grief you are experiencing over your Mum's dementia, the thread https://www.carersuk.org/forum/support- ... mood-12505 has lots of ideas about how to help you feel more positive and increase your resilience.

We are all here for you too.

Definitely counselling needed, to help you get through this. On my own I'm strong, resilient, but the fan loaded wirh problems has been pointing in my direction for too long, so I'm having more at the moment.

Make it clear that the purpose is to support you caring for mum now. Think of questions like How can I deal with mum when she says/does.......? then write them down, as a starting point.
Hiya Maz,
So sorry you are feeling so bad. Another big hug coming your way. I wonder if those sharp headaches linked to deterioration are 'mini strokes'. I know there's another name, but can't recall what. Maybe that's all part of this horrid, horrid disease? I don't know. I'm lucky in that my Mum's mental deterioration seems to be sheer old age, although it might be called dementia too. Not been diagnosed. She's worse when she's tired in the evening. Sundown Syndrome? I find even that very hard to cope with so I feel for you and your Mum. Close your eyes, hold your arm out. That's me squeezing your hand.
Thanks very much to all who replied. I will have a look at the thread re coping with low mood. There will probably be something there that will help me!

Elaine - thank you for your lovely words of support - made me cry even more!!! I often wonder if mum is having a serious of mini strokes at times (TIAs?) which leads to the added confusion. It's so heartbreaking to witness.

I think I'm going to have a battle on my hands with this counselling lark. Just called to make an appointment, but can't take on as they have not received my referral!! I think I'm being fobbed off actually. Mum's CPN referred me to a counsellor within their team and I had a call from someone and they did a phone assessment. Then they sent me a link to a website for a local voluntary organisation and basically said call them and book an appointment. Now I've done that, they say they don't have my details and need a referral! Not great when someone needs counselling. I've just put a call into the CPN and will tell her I'm not impressed and ask her to get someone to pull their finger out.
Hi Moz,
I feel for you and would definitely say counselling would be a good idea. Just a thought but is there a careers group in your area? Ours has coffee mornings for carers and carees where there are others to talk to who understand where you are coming from.
Could you try your doctor for a counselling referral too?
Take care
Maz1963 wrote:I hate this disease. Why did it have to happen to my mum? She's had a few sudden, severe headaches recently which have coincided with a sudden change in her cognition. There it is, the dementia. I can see it happening right in front of my eyes. To my poor, poor mum. Why? What did she do to deserve this hideous ending to her life? Each night I go to bed and say a prayer that God takes her in the night in her sleep so she doesn't have to suffer this thing any longer.
Hi Maz, you're not alone, I think many of us feel the same way, when watching our elderly parents succumb to dementia, it's such a cruel disease. Sadly, it seems to be getting more common, maybe due to people living longer than they used to (years ago many people died in their 70s, so didn't live long enough to develop the dementia that is so prevalent in people in their 80s).

My father has fairly advanced dementia now, and is in a care home. In his case he probably contributed to it by his years of alcohol abuse (bottle of whisky a day), but that knowledge doesn't make it any easier - if anything it can make it harder to watch his decline, while having thoughts that maybe he'd still be living at home independently, dementia-free, if only the drink hadn't got hold of him. But the blame game only leads to misery and bitterness, so is best avoided. In your mother's case it's understandable that you feel angry that fate has dealt her such a cruel blow, and about the sheer injustice of it all. It really is a very bitter pill to swallow, whether the disease was self inflicted or not, so cry and rant and shout and scream about it if you feel the need (though perhaps not out in public - strangers may not understand ;) ).

I've read your other posts and see that things began to get stressful last November when your mother was admitted to hospital. It seems you were considering moving her into a care home at that point, but then changed your mind and accepted a home care package. From what you're saying now, do you think a care home may now be a better option, for both of you?
Shewolf - I agree. It's got to be the age factor (mum will be 90 in May). My father died at 74 of cancer (started in bowel and quickly spread - he was gone in a matter of months). It was hideous watching the cancer eat away at him and it was hideous watching him take his last breath, but because it was relatively quick, I felt he didn't suffer for too long and was allowed to pass to some eternal rest fairly quickly. It's the uncertainty and the timescale of dementia that I find so very, very hard to accept. A good friend of mine (who is actually visiting us right now) went through this with her father - exactly the same, Vascular Dementia. His illness lasted about 6 years so she saw the journey from before dementia to his death. She showed me a photograph last night of him just before he died. Poor, poor man, he looked like a tiny, frail child, his face was wasted, red, his eyes were closed. Soon after it was taken he passed away. She told me it was a release, she was relieved, he wasn't suffering any more.

I just CANNOT get my head around the fact that my mum may go through exactly the same journey. I just cannot bear the thought of her looking like that. I can't. It's too hideous. Of course seeing dad's decline due to the cancer wasn't easy, but we knew it wouldn't last for years, unlike this dementia 'thing'. I hate it! Yes, dad looked awful towards the end, but he looked awful for a matter of months, not years. How on earth am I going to be able to cope with seeing my mother go through years and years of this hideousness? I'm calling on every reserve I have to try to accept this, including my faith, but so far it's not working.

I just want my mum to go to sleep one evening and not wake up. I want this to happen before this cruel disease puts her through the 'dementia process'. I know that's a terrible thing to say, but that's how I feel.

At the moment I am looking after mum at home, with the help of a carer coming in. That's another thing I'm struggling with - handing her over to a care home where I won't be in control of her care. That's another story - I know one day I might HAVE to do this, but I know I just won't be able to. I can't.

And the worse thing is that there is no answer to this. No solution. No painkiller to make it better. Nothing I can put into my mind that makes any of it feel any better. I don't won't it to beat me. I won't let it. Sadly though, one day it will, I'm sure.
Maz, do do do remember that what YOU feel about your mum's declining mental state isn't what SHE feels! I know that some dementia sufferers may be 'semi-aware' of what is going on (which must be scary), and some do get very agitated and angry - I do hope that isn't so with your mother of course. But for many, many dementia patients their mental state is very 'calm'. This was so with my SIL's mother, who took two years to go from a vibrant, hardworking fully mentally alert person to an inert, barely conscious person who died very shortly after reaching that level. But in the years she had dementia she was not personally distressed, she sort of 'drifted' through it. The same is happening to my MIL. She isn't agitated, she isn't angry, she is almost reverting to a child-like state. There are things she doesn't want to do (eg, go out when it's cold - I tried to take her for a walk in the sunny garden but she shivered and went back in!).

So although it's awful to witness, do hang on to the thought that for THEM it isn't (so it seems) dreadful to go through. I feel that both my SIL's mum and my own MIL are 'fading', they're like a photograph that is losing its colour, becoming washed out. Yes, its desperately sad to see their minds 'dying' in front of one's eyes, but for them, personally, in a way they are protected from understanding that they are dying. That 'knowledge of their own impending death' is something that cancer patients are not spared. Your dad had to face it, and so did my husband - that's not something I would willingly put another human being through. In a way, dementia protects the person from the realisation that it is slowly killing them.....

Just a word on care homes, my MIL is in a LOVELY care home. The staff cosset her and jolly her and are so kind. It really is like a very nice 'country hotel' with lovely views over lovely gardens, and entertainment every day, and nice meals together, just like in a hotel. So if the point comes when your mum does NEED residential care, please don't think it will be horrible! It need not be at all, if the care home itself is the right one.

Wishing you well at such a sad sad time, Jenny
Jenny - yes I know, I should appreciate the fact that mum is unaware that she is ill (and I am thankful for that). I think, to be honest, I am still in denial about her having dementia as it happened so suddenly. I'm better than I was, but still reeling from it all. She had a terrible time when it was first triggered - nightmares, delusions, paranoia. She turned into someone else. She was so, so scared of everything. Thank God all of that has stopped and she is now actually a bit more like her old self, but with memory impairment and a bit of confusion. I do hope she remains calm. Whilst she is, I can cope with her at home (with carers) and of course it's emotionally 'easier' (for me) than dealing with her past behaviours.

I will try to focus more on how she is feeling (and she certainly seems fairly happy and calm at the moment). That should help me accept this, in time.

The unknown timescale of it all haunts me though. How much of my life is going to be eaten up by the fact she now has this disease? I could be retiring in a couple of years (early!) and having the time of my life, travelling and enjoying myself. But now all of that's on hold. I just pray that when it's all over, I will still have some health and sanity left to enjoy the rest of my life. Hopefully I will.