Hi all. I really need some help and advice please, and sorry for the post being so long…
A little bit of background for everyone
I’m currently caring for my elderly parents, both in their mid eighties. I’ve taken a year unpaid from work on carer’s leave, moved in with them and left my husband and four cats back home 20 minutes away.
My father has probable dementia, never formally diagnosed due to covid restrictions although a brain scan showed ‘abnormalities’. The doctors surgery frailty team nurse did an informal impromptu test at home and told me she’s sure he has it.
My mother has erratic type 1 diabetes and trigeminal neuralgia. She is buckling under the stress of how my father is, and I have watched her rapidly decline over the last few weeks, resulting in high strong doses of antibiotics and a brief hospital stay.
Their doctor’s surgery is brilliant, especially as I have been in contacted about both their physical ailments a lot over the last few months. But there never seems to have been a time when I have been able to chat about how my father is or how he is behaving, especially towards me.
I have read and read so much about dementia and how people are and how a carer can cope and manage but the reality is rapidly becoming a nightmare for me. It’s only been five months and I’m already tearful, reactionary (shouty sometimes or snappy), resentful to my father for stressing my mother and on it goes. All joy or laughter has gone, and I am ashamed writing this.
Tonight a minor situation where we’ve had to push apart my parents single beds to make a gap escalated in to my father shouting I was interfering all the time, my mother crying and me also shouting and telling my father I’d had enough and was calling the doctor in the morning. Strangely enough the beds were separated yesterday and all was fine (same room but two foot gap) but to ight it wasn’t. We’ve needed to do this because my mother has been so ill but my father literally sleeps almost on top of her until she is almost out of the bed! She actually slept better last night due to the space in her bed. I totally get the dementia person’s fear, misunderstanding and all, but tonight I think I reached breaking point as I was absolutely no use in the carers role. I am horrified that I appear unable to cope in a role I promised my parents a few years ago I would do. I know the covid situation hasn’t helped as I feel very isolated.
How can I do the caring better, sort myself out and be that help to my parents I was in the first few months? Because I wasn’t how I am now and never felt it was difficult. What’s changed? I just feel like a child and want to throw my Teddy out of the pram in frustration. Please tell me other people feel the same sometimes?
Carla
Dementia is a cruel disease, and however much you want to help, sadly there is nothing you can do to halt it’s progression. In it’s later stages, it is simply impossible for one person to care for a dementia sufferer, and you are trying to care for two parents!!
Dad will soon need a team of carers to care for him, residential care is almost inevitable.
Are they both claiming Attendance Allowance?
Did you know that someone with “severe mental impairment” is exempt from Council Tax. Fairly easy to claim.
Have you been in touch with Social Services asking for a Needs Assessment for them, and a Carers Assessment for you?
Is the house streamlined as much as possible, or is your role not just carer but cook, cleaner, and gardener too?? Is there a dishwasher, a tumble dryer, a walk in shower?
I can’t believe I accidentally lost my reply! This is ‘take two’.
Thank you for your reply. Both my parents get carers allowance and I get the carers support payment (forgot what it’s called sorry). I didn’t know about the Council Tax though so I’ll look in to it. I’ve decided to telephone the doctors tomorrow and ask about getting a proper diagnosis or help as I can’t carry on like this. I can see the fear in my father’s manner when he is shouting and it breaks my heart, but I’m not helping either of them by my reaction. My own surgery knows I’m a carer so maybe I need to get in touch with them too? It’s getting the time!
We had an assessment last December and could open a hospital with all the equipment we were given and the stair lift we bought…none of which my father will use! I’ve read about making a house dementia friendly too but I think my mother and I are trying to pretend it’s not too bad. It is though, if I’m honest. I wish my father would let me help him personally but he won’t and my mother is just becoming more frail as I watch. She is now snappy and also getting angry at my father but I think it’s because she is exhausted, scared and unwell herself. This evening was really the final straw and it’s not a nice environment for any of us right now. I really appreciate your advice and words because you’ve made me realise we’ve been trying to match up to everyone who keeps saying how wonderful we are caring for my father. I keep getting told I’m wonderful for caring for my parents and it really isn’t a problem actually, though the situation wasn’t going to be quite like this when we planned it a few years ago. The covid situation really hasn’t helped either.
Writing this all done is helping too. Genuinely I cannot thank you enough for replying.
Hi Carla welcome to the forum
My husband had strokes and vascular dementia. Many years ago when all was well and happy, we promised each other that we would care for each other, and not allow a residential home. Sadly it was a promise I could not keep. His consultant strongly advised a nursing home was for his own safety and needs. Mine too. Needs, not wants are more important, and promise’s that can’t be met very sadly happen. This happens in many families, and for the right reasons. Please try not to feel guilty.Hard as it is.
As Bowlingbun states, assessments are needed, for yourself and your parents.
Such kind words. I did burst in to tears reading them though. I have no idea why. Probably guilt in spite of you sayi g don’t feel that way. All this has made me really think hard about my future, and my husband’s. Ive told my husband I don’t want our children to look after us if we need it when we are older (I’m 61). I couldn’t do that to them! I think I see the situation I’m in and tell myself my father’s not so bad, but that’s on a good day. On a bad day the situation is a nightmare. I hope I do phone the doctor tomorrow and not put it off again (another ‘guilt’ as I feel I’m being annoying contacting them so much). I will make a determined effort to read the advice given by you and bowling bun in the morning to remind me!
Thank you