Hello, I’m Stacy, nearing 50 this year and full time caring for my 84 year old Mother who has Dementia.
Quick background: Father died of Cancer about 18 years ago, horrible 2 years. Sister of Alcoholism 3 years ago, horrible 28 years! No other family left. I moved in permanently with my Mother over 5 years ago as she was finding it difficult to manage life. But it got worse after Covid and she lost a lot of her ‘’ Brain faculties" as I call them. Last year I left my full time 7 year job to care for her and now stay at home with her 24/7. She has Dementia which is progressing every day. She can still walk, talk and go to the toilet but some days that is about it.
I came to this forum as I am now finding it increasing difficult to try to be a good carer, its breaking my heart to see her in this way and so cold to me and far away and i feel angry when i know i should be better than this, yet I have to give up my life for her…Not that i don’t want to, I made that choice but it gets harder every day to think I made the right one and i feel i should be able to help her more.
It’s making me sick physically, she is also nearly deaf so I have to shout anything for her to hear, which is causing me constant stress as i am a quiet speaker and she thinks i am always nasty to her due to the shouting, yet she refuses to put in her hearing aid. What can I do to calm this situation and make it better for us both?
Much as i love her I also think all the traits in the personality get worse with Dementia!
@Indigoriver hi Stacey. And welcome to the forum. You have come to the right place, and I’m sure you will find as much helpful advice and support as I have. I am 61 and care for my mother who is 88. She doesn’t have dementia, but she has a number of personality disorders including extreme narcissism and oppositional defiance.
I don’t live with her, unlike you, which is just as well because she has moved house five times in the last seven years. She now lives near me, as I moved her here last year. She was very vulnerable and allowing strangers into her house. Large amounts of cash were going missing at the same time!
I too am the only one left to care for Mum. My only sibling, my sister, is in a persistent vegetative state in a care home down in Southampton. Sometimes it’s a blessing being the only one left, because there are no arguments or consultations about decisions. But on the other hand, the weight of being the only one responsible bears down on me. I also have ill health - arthritis and fibromyalgia and Mum is very intolerant of my need to look after myself sometimes.
Where I do identify with you is the sense of resentment and frustration I feel. My mum is now medically non-compliant, refuses to wear her hearing aids or make use of any of the aids I have put in her house to make her life a bit easier. She also refuses to acknowledge how ill she is. (She has a serious heart condition and is in fact a ticking time bomb) I have put in professional carers for us much as I can, but we are now at the maximum Mum can afford.She expects me to pick up the slack and flatly refuses to do the sensible thing, which is to go into a care home so that I can have a break and focus on my own health. last week her carers told me that she had asked them to lie to me about how much pain she was in, because she knows I will dial 999 and get her admitted to hospital.
Is there any support you can call on? Perhaps a chat with your GP would be worthwhile? Can you afford to get any carers in for her, so that you can have a break? I assume that she is now lacking in mental capacity due to her dementia. In that case, you could conceivably Ask for a “best interest “meeting and establish what would be best for you both.
We are all here to support and many of us are in the same or similar positions. It helps to chat things over. I send you strength and my best wishes.
@Indigoriver Hello and welcome from me too.
I am the carer of my much older husband - he is nearly 86. He has not been officially diagnosed with dementia but I am convinced he has frontotemporal dementia. He has other co morbidities too and is medically non compliant.
I totally relate to your frustration. Do you have a local ‘Support for Carers’? They do sometimes have a telephone befriender service - often these volunteers have been carers themselves. Some groups also offer meetings. The isolation with regard to caring is a total nightmare.
My husband is very deaf but refuses to wear hearing aids . He wont take the inhalers properly so I am often up at 2am or 3am because his coughing is not controlled. Frankly I no longer want to go on caring but it is the only way I can keep my home.
Are you able to leave your mother alone safely for short periods? If so try and get out if you can even for a walk or a coffee. I think ultimately you have decide how long you are prepared to put YOUR life ‘on hold’ and maybe if she is starting to need more care than you can give, it is worth thinking of her future needs. No one can care and be ‘on call’ 24/7.
Finally have a look on Roll Call. We are a friendly and varied bunch and we share the ups and downs of our day. Sometimes humor creeps in too. No judgement as we all understand how soul destroying caring especially long term caring can be.
BTW I totally agree that the negative characteristics get magnified with dementia! My husband has always been ‘controlling’ and a bit of an intellectual bully. But now we call him ‘Hitler the Senile Toddler’ because this is how he behaves. It may be the ‘loss of control’ causes issues? No easy answers. I have to disengage to a degree for my mental sanity.
My mum had dementia, which became increasingly difficult as it opened out some of the nastier side of her personality, removing what controls she’d put in place over the years. The deterioration during covid and multiple hospitalisations accelerated to the point where she could no longer cope at home and had to into residential care. The decline accelerated from there and she died a little over a year later during Christmas 2022.
I recognise a lot of your feelings, both from personal experience and from supporting a number of carers in my area. It’s absolutely natural to feel that way - in some ways, I’d be worried if you didn’t.
Welcome to the Forum.
I’ll start with a few practical questions.
What support are you getting?
When did Social Services last give you a Carers Assessmeny, and mum, a Needs Assessment?
When did you last have a holiday?
Does mum own or rent her property?
Have more than £23,000 in savings? Just yes/no.
Does she receive highest Attendance Allowance?
Claiming exemption from Council Tax?
@JayneyT Totally get the weight of being the only one responsible while having health issues of one’s own.
Perhaps you need to instruct the carers to call 999 if your Mum reports being in that much pain. It’s not fair to either of you; her being in so much pain and not receiving the treatment she needs. You for feeling you have to put your own needs last and your health suffering as a result.
@EEG Thank you. Yes, I have agreed with her carers that if she shows any signs of distress they are to phone 999 and then me. No question. I have also made an appointment for us both to go to Mum’s GP on Monday and told the receptionist when I called about the lying and that I couldn’t cope with her and her pain any more. Fingers crossed.
When I popped in yesterday with a certain brand of fruitcake that Mum apparently can’t live without, the carer told me Mum has even stopped her embroidery now because of the pain in her hands. Also there was a cottage pie in the fridge with one spoonful taken out of it, so she is clearly eating less and less now too.