I can cope with the with the poor memory, the sundowning, the repetition,need for routine, sleeplessness, the moods but not being able to share lifes joys...Yet again been up all night because he is anxious about a family occasion... All I want to do is make my daughter a 40th birthday cake and take it to her to share a birthday tea with my grandchildren. As always he doesn't want to go anywhere, but now he doesn't want me to go...sat here so angry and upset, its been like this to long....attending occasions on my own...its sucked the joy out of life, my children are hurting and upset for me..where do I put this anger and grief? He has been saying He wants to die,he doesn't know what to do, he is spoiling things for me...I am trying to reassure him and hold myself together, love lies pouring out of my mouth, its okay, we don't have to go, while inside I'm screaming but I want to go....my daughter needs me to .... i need to see her and my grandchildren..have a nice time....he is asleep now why I try and calm down and have a rant on here. How have others coped, do we just give up!
You never give up because you care. But dealing with dementia in a loved one sets certain parameters which if you choose to ignore, will come back to bite you with a vengeance -- unless you do not care. But it is clear that you do care and that
nobody needs to inform you of what that entails. Already you have taken on board all the salient features of this unremitting disease and simply ask to spend a moment of time with your daughter and the grandchildren.
Totally reasonable and understandable. Therein lies the perpetual problem. Dementia, alas, is the antithesis of all that and as it resides in the body of the one you care for and love, makes it virtually impossible to address without that frustration, that stifled anger, that 'inner scream' welling up inside of you .... all of which can, unfortunately be markedly picked up by the one you care for, even if you are not aware of it. A kind of vicious circle confronts you and that is not good for you nor the one you care for.
And you need to see your own daughter and take that cake! This means we look to ways and means. Are there other family members? Has daycare been considered? Do the family members realize what you have to contend with in actual fact or do you, like so many of us, soldier on and don't ever contemplate unburdening your woes on anyone else, least of all family?! What would normally entail just a moment of planning and preparation (the birthday visit) now becomes virtually a non-runner because the implications seem to overwhelm everything about it. Dementia sets priorities whether we like it or not. In the daycare centre, there are folk with dementia who come in to allow that moment of 'respite' for their carer. A few hours of activities, chatting, tea and biscuits, maybe a film or whatever, just in order to give THEM a change, but most certainly to allow their carer 'time out'. But then you need to enjoy a degree of cooperation, as many folk with dementia are so withdrawn to such an extent that they refuse to leave the house come what may. So perhaps a Carer to visit the house for a given period, whilst one goes shopping, or maybe visit a daughter? Whilst it often seems simply a hopeless scenario, it need not be so and it is so important that the Carer looks after themselves, else slowly fall victim to fatigue, depression and eventual inability to cope.
Social isolation seems to be an integral part of dementia as it enters mid to latter stages and it varies in that regard. We have to accept that the disease is the culprit and NOT the person. We have to accept that unless we change, the dementia most certainly will not - not ever. That change will affect our lives if we are willing to be the Carer and that we also accept, else leave it to another and get on with your own life (won't happen).
And yes, day to day, whilst something of a cliche, is nevertheless a prudent credo to adopt. Each and every case is different. My own direct experience with Alzheimer's and vascular dementia mirrors your own in so many ways. But I do not have a family. I have siblings. But unless 'family' spend time in your shoes and that means more than a few hours,
they cannot understand at all what you are dealing with, let alone how you feel inside. And of course you do not wish to engage them with that, because it has to be a commitment to have any meaning and that will simply not happen.
I hope that you are able to arrange that 'birthday' date, by hook or by crook.
With warmest wishes.
