First post. Coping (or not)

[Red19]

My mum doesn't have a diagnosis yet but dementia is looking likely and I thought this the most appropriate place.
Brief history. Mum had an episode of delirium last year that resolved in around 10 days. 8 weeks ago, she experienced the same following an op and stay in HDU. It has not resolved and a diagnosis of dementia seems likely, although we are still in the process of that.
I'm struggling to cope with the sudden change in my mum and what it will mean for us all. She's currently in a nursing home having rehab but will come home soon with maximum care. Prior to this she was living independently and driving, managing het own affairs and long term health condition. Now, she's often very confused, she hallucinates, she can be agitated and paranoid, emotional, has moments of insight where she's very distressed about what's happening and at others thinks she's still at work (78 and many years retired). We have since found from other relatives that she's had odd episodes since last year that support the dementia theory.
I'm struggling badly with this sudden change. I work almost full time and have 4 children aged 9-15 and have had to take time off sick ad I was so anxious and distressed by it all. I went back this week but had to be sent home today as I became so upset. In terrified of losing my job and so frustrated that I'm not coping. I want my old life back! I'm so unhappy and miserable and know this will only get harder when she comes home.
Please, someone tell me how to come to terms with this. Within a few weeks my mum has almost become a stranger and my own life has changed and I don't know what to do. I'm used to being someone who can cope with anything. I need my job, I need to be able to care for my family, and I need to not feel so tearful and unhappy. I can't comprehend how my life has changed in a few short weeks.

 

[LadyA]

Hello @Red19 and welcome.

I'm sure the sudden change in your mum has been a tremendous shock to you. It sounds like you have a full and busy life without taking on any more.

You've said it yourself: you need your job and you need to be able to take care of your family. In order to do that, you need to ensure the care for your mum is put in place before she is discharged, and that Social Services understand that you are not part of the Care package! You can take just as much care of your mum by making sure care is in place. It doesn't have to be you doing the hands on stuff!

For the moment, try and do the practical things: get POA if you can. Apply for Attendance Allowance, and Council Tax discount for your mum. And try not to worry too much, although that's easier said than done I know!

 

[Bunpoots]

Hi,
You mention other relatives have noticed changes in your mum. Do they live near her? Do you?

Once she's home with a care package you may find that things settle into place. As you say, you need to keep working and look after your children. This should be your first priority. I know it's very hard to step back from a loved one and entrust their care to others but if you worry yourself into the ground you'll be no use to your mum or your children.

As Lady A says, Sort out practical support (are any other relatives willing to help?) and things will seem less daunting. Only do what you know you can carry on doing long term. Social services have a "duty of care" you don't. You have to look after yourself and your children too.

There's a wealth of experience on this site so keep posting and reading. I know it makes me feel better to know that people understand.

 

[Red19]

Hello @Red19 and welcome.

I'm sure the sudden change in your mum has been a tremendous shock to you. It sounds like you have a full and busy life without taking on any more.

You've said it yourself: you need your job and you need to be able to take care of your family. In order to do that, you need to ensure the care for your mum is put in place before she is discharged, and that Social Services understand that you are not part of the Care package! You can take just as much care of your mum by making sure care is in place. It doesn't have to be you doing the hands on stuff!

For the moment, try and do the practical things: get POA if you can. Apply for Attendance Allowance, and Council Tax discount for your mum. And try not to worry too much, although that's easier said than done I know!

 

[Red19]

Thank you for your replies.

Yes, it's been a horrible shock. I find the visits so distressing, I literally never know what I'll find and it's just painful seeing her like this. I feel sick all the way to the home and come home drained. I just don't know how to feel better about this, I'm just so unhappy.
The care will be in place but the practical arrangements seem overwhelming right now, I'm finding it all so difficult because of how I'm feeling.
I have a sister and we are sharing the load but she is also naturally very upset by it all and I feel for her and our kids too.
My uncle's are being very supportive but they are 81 and 74 so I can't ask them to do much. They have offered and are visiting regularly, which is enough for me tbh, just knowing they care about her helps.
I just wish I could stop being so emotional as it's disrupting my working life and I really don't want that. I'm grieving I suppose. I'm also very worried for her safety as she is wandering a lit in the home, especially at night. She's also a big falls risk and on warfarin which is scary.
Thank you and I'll keep reading xxx

 

[LadyA]

@Red19 Yes, of course you are grieving. Quite rightly so. The "mum" that's always been there has been, to an extent, lost to you and you and your children have lost your future with her. Not only have you to deal with that, you also have to deal with the official stuff of getting care in place, doctors, tests, etc. Dementia has been described as an illness where we lose our loved ones three times: first, lose them (to an extent) to the illness's.. Then, we lose them again when ey go into full time care. And finally, we lose them to death. Each of these losses can leave us feeling bereft, and each loss must be grieved.