Well, mum has been with us now for nearly four months. She has vascular dementia which was made worse by my dad’s sudden death in March.
She came to live with my husband and I in our little 2 bedroomed house with only 1 bathroom.
Over the last few weeks Mum has stabilised a lot. She sundowns every day and is quite demanding and gets upset if things are not done exactly when she wants them done.
The problem, I think, is not her, it’s me.
I am struggling to come to terms with her dementia and struggle to feel any emotion. I find it hard to be affectionate toward her as I have trouble separating my ‘real’ mum with the one who has dementia. The one who is selfish and nasty. Don’t get me wrong, I am loving and kind, I just don’t feel it inside.
My life has turned upside down. I no longer work. I’m with her all the time. My husband and I have no privacy. She hates to see us together and gets upset if we talk to each other.
All of her feelings I can understand. She has lost her husband and has had to move in with us. She feels she has no freedom. She wants to live alone. She wants to live back where she came from but it’s 4 hours drive away so is not practical, plus she can’t live alone. I do try to explain but she sees me in a negative light. She is so nice and gracious to my husband but irritated and grumpy with me. It hurts.
I do everything I can to make her life happy and comfortable but she is not happy.
I suggested going to a day centre but she doesn’t want to. She has no interest in doing anything. When I suggest something or try to get her to do something with me she will say “I don’t feel like it”.
Every day I promise myself I will try harder but each day I fail. It is making me feel so depressed.
I feel for her, I really do but I’m struggling with this stranger in my house.
She wants to live in a care home but doesn’t like the ones she can afford (with social funding). I’m not sure she even realises how it will be in a care home. She used to live in a warden assisted flat with my dad and I’m sure that’s what she thinks of as a care home.
All this is making me feel rubbish as a person. I ought to be affectionate. I ought to be able to understand. Even after reading books about it I still struggle.
I ought to get a grip on this but don’t seem able to do so.
Sorry for the rambling post. Thanks in advance to any who answer and thanks to those who have answered in the past.
There is a yawning chasm between caring for a loved one at home and caring within the context of a Care Home. Added to this, every single case is different. We are all different. We have our own likes, dislikes and histories and in 'normal' life even these can bring about friction. Dementia brings with it an enormous challenge, especially when one is caring either one-to-one at home, or indeed in concord with a spouse or partner at home, because when any brain is compromised with a dementia, let us say, vascular, the whole reference to what is seemingly 'normal' for us as a whole, changes and changes significantly. But then, not all the time? A difficult experience with a loved one at home which errs on despair, might be perceived outside that domain (home) by a friend or observer as a fantasy, simply due to the fact that the behaviour of that loved one is more or less 'normal', pleasant, devoid of any semblance of what took place an hour or so before. This I know to be quite true, because I lived with it. The 'changes' in my late mother were many and varied, and at times deeply unsettling. Paranoia was there, as was agitation, hallucination, incontinence, alarm and abject fear. As was tenderness, utter despair and distress, fear, anxiety, humour, long periods of nothingness, much sleep and at times, lucidity. All of this and more subject to a diseased brain, in which the billions of neurons are no longer behaving in the way they once did. Therefore the resultant behaviours are not only at times bewildering to us, but have real meaning for the one living with dementia, even although we might find them antagonistic, unkind, awkward or plain nasty, it is 'communication'. So this 'capacity' which one takes for granted - question and answer, what is on our dinner plate, being able to say "yes" or "no" directly and with intent, or tell the time of day, know where we are or where indeed we might be later on, and so on and so forth - all of that and more changes and changes in quite often very subtle ways, in as much as an aggressive response or even a certain 'dark' look, might be taken as read, literally - which is a mistake, on our part.
And one can study (as I have done) papers, research programmes, many, many factual accounts from across the globe, numerous forums, high-level discourses into the working of the brain and the mind-boggling functions of the cerebellum or the hippocampus (usually the primary area of attack in Alzheimer's) - all of which is both fascinating and highly significant in gaining perspective on this remarkable tool housed inside our skull - but none of this will enable a smooth or easy ride when it comes to actual CARE. You are at the working face of dementia and it has many faces, which can be confusing and devious. But the one who wears that mask is at the mercy of the disease and not the instigator of it. This is why one has to 'enter' that world with all its demands on your energy and patience,
because a dementia person cannot escape their extraordinary world. And this, for many, requires a person-centred approach which runs to 24 hour days, if one is to address the disease with empathy and compassion combined. Of course you have also to take good care of yourself, but that can become something of a luxury, unless you acquire help. And what if the said loved one refuses 'help'? Do you insist? Argue the point? Knowing that dementia will always win an argument? If you can -- and this is my own story. Each person will take their own journey through dementia and that is set in stone -- try to see everything in terms of the dementia, as an intruder who occupies the one you love and know, subjecting the loved one to all the trials and tribulations which this disease entails. Whatever it throws at you (sometimes literally) see as 'the disease' and NOT the loved one. The tantrum and the 'nasty' response, again, the disease and NOT the loved one. Then, perhaps, slowly, one's overall approach becomes a 'positive' thing, not prone to angst, irritation, anger, frustration and so on. It is worth a try?
And you are of course NOT "rubbish" as a person. On the contrary, you are caring for your mother and quite clearly wishing to achieve that care in the very best way you feel able. The world of care in dementia is not like any other, because you are living with that 'stranger', who is in fact not a stranger at all, but your own mother, inhabited by a stranger we term 'dementia'. And if and when you can approach daycare, or the Care Home question, without too much anxiety, but maybe a 'transition' via respite, then all to the good. This only you can judge, because you know your own mother better than anyone else.
With warm wishes.
Well, mum has been with us now for nearly four months. She has vascular dementia which was made worse by my dad’s sudden death in March.
She came to live with my husband and I in our little 2 bedroomed house with only 1 bathroom.
Over the last few weeks Mum has stabilised a lot. She sundowns every day and is quite demanding and gets upset if things are not done exactly when she wants them done.
The problem, I think, is not her, it’s me.
I am struggling to come to terms with her dementia and struggle to feel any emotion. I find it hard to be affectionate toward her as I have trouble separating my ‘real’ mum with the one who has dementia. The one who is selfish and nasty. Don’t get me wrong, I am loving and kind, I just don’t feel it inside.
My life has turned upside down. I no longer work. I’m with her all the time. My husband and I have no privacy. She hates to see us together and gets upset if we talk to each other.
All of her feelings I can understand. She has lost her husband and has had to move in with us. She feels she has no freedom. She wants to live alone. She wants to live back where she came from but it’s 4 hours drive away so is not practical, plus she can’t live alone. I do try to explain but she sees me in a negative light. She is so nice and gracious to my husband but irritated and grumpy with me. It hurts.
I do everything I can to make her life happy and comfortable but she is not happy.
I suggested going to a day centre but she doesn’t want to. She has no interest in doing anything. When I suggest something or try to get her to do something with me she will say “I don’t feel like it”.
Every day I promise myself I will try harder but each day I fail. It is making me feel so depressed.
I feel for her, I really do but I’m struggling with this stranger in my house.
She wants to live in a care home but doesn’t like the ones she can afford (with social funding). I’m not sure she even realises how it will be in a care home. She used to live in a warden assisted flat with my dad and I’m sure that’s what she thinks of as a care home.
All this is making me feel rubbish as a person. I ought to be affectionate. I ought to be able to understand. Even after reading books about it I still struggle.
I ought to get a grip on this but don’t seem able to do so.
Sorry for the rambling post. Thanks in advance to any who answer and thanks to those who have answered in the past.
