It's just so hard

Chinoise

Registered User
Jan 10, 2017
11
0
I asked my GP for counselling because I knew I needed someone to talk to who understands... so far (3 months later ) I've had two sessions, but I think this forum may be more what I need; To talk to people who understand - and to people my age (early forties) who are seeing their parents change in ways so difficult and strange and scary. I don't like my mum anymore because she's not who she used to be.
We argue all the time.
She loses things.
I cry a lot. I'm supposed to be preparing for a job interview but I can't concentrate because a) I've lost the job description [things are always disappearing in this house] and b) I'm upset because she just came into the bathroom and used the detergent bowl you put in the washing machine as a glass to rinse her mouth as there is no glass by the sink. And she thinks it's ok, and "why didn't I do this, and why did I do that" blah blah blah.. it's like she argues for the sake of it and it doesn't make sense. I know I need to understand she is in a scary difficult place herself, but I can't cope with it.

She went away for Christmas holidays and I was left in her house - I cleaned it, kept it tidy etc. She came back this morning. I had anxious nigthmares preceding her return and now I'm in tears. The mess and chaos is returning and I can't handle it.

I know I need to get a job and move out ( I left my job and home in another County to help out - her husband also has Alzehimers and is in a care home now) and that is now my plan, even though I'm worried about her living on her own. I don't think she can look after herself but she doesn't want to live in retirement living.

What a long rant.
I don't want to be her carer. As I say I don't even seem to like her anymore. How bad is that!

Now maybe I can try and focus on my job interview preparation.
How do other people my age get on?
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Chinoise, welcome to TP. I'm sorry to hear about your situation and that you had to find your way here. I've found a lot of support, advice, and information here on TP and hope you will as well.

I won't see my early 40s again, but my age is forty-something! My mother has Alzheimer's and is 74. Will I do, as a peer? ;)

Before anyone gives you specific advice, may I just ask, please, if you are in the UK? This is relevant for getting you advice about support, a carers assessment, attendance allowance for your mum, PoA, et cetera; it's not meant to be nosy.

If you do live in the UK, then here is a fact: you do not have the burden of care, the state does. You cannot be forced, to be a carer for your mum. Also, there is some help available. I'm not saying it is easy, but it is possible.

I have to move on, but didn't want to read and run. Others will reply, I'm sure.

In the meantime, there is a lot of good information about dementia on the UK Alzheimer's Society website. You might find some of it helpful, as what you describe is all common with dementia. You don't mention a diagnosis, so I'm wondering if your mum has one yet?

Have a look round their website; this might get you started: https://www.alzheimers.org.uk/Caring_for_someone_with_dementia/

Some counsellors/therapists are better than others. I hope you get some help from yours. I wonder if a support group might be helpful for you; I rely on both TP and my real life support groups. It's very empowering to be in a roomful of people who really understand what you're talking about. Planet Dementia is so isolating, much of the time. Age UK or the Alzheimer's Society might be able to help you find a support group, carers' cafe, et cetera, or others here might know how to put you in touch with your local resources.

I will be honest with you: I don't like my mother, either, and I hate what the disease has done/is doing to her, and to me. I don't think there is anything wrong with feeling that way, or admitting it. It's just the way it is. Not how we want it to be, certainly, but just the way things are right now.

Very best wishes to you.
 

Stripeysox

Registered User
Oct 18, 2016
23
0
I'm afraid I'm out of your age range, but can relate so much to your post.
Things are changing so quickly with my mum (95), every week she seems to be getting worse and worse. Fixations on things and just a loop of saying the same unbelievable ridiculous stories, starting again as soon as the story finishes. Aggression and violent outbursts all the time. Short term memory of zero.
All this makes me not like her any more too. I get a feeling of dread every time I drive to her house, before we were really, really close. I've never admitted that before until I saw it in your post, not even to myself. I don't know how to deal with this, I don't suppose any of us do but we just have to learn on the job.
Good luck with your interview!
 

Lavender45

Registered User
Jun 7, 2015
1,607
0
Liverpool
I'm older than you, 47 in fact, but I can relate to a lot of what you said.

I'm at a stage where mum needs a nursing home because of her aggressive behaviour. I've found caring 24/7 totally exhausting. I have up work and friends and with hindsight a bit too much. I hope everything goes well with your interview. I think you are doing the right thing. There has to be a balance between your caring role and you as an individual. I forgot that somewhere along the way.

Definitely pursue things for yourself, a job, hobbies, friends etc and try to get a network of carers in place to support your mum. It's most certainly where I went wrong. X
 

Earthgirl72

Registered User
Feb 2, 2016
135
0
I'm 44, and care for my Dad, 76 with vascular dementia. I don't live with him, I'm a few minutes up the road.

That said, I know exactly how you feel. I do resent so much that caring brings - as much as I hate to admit that. I constantly feel like

a) a bad daughter, for never feeling that I do enough, for resenting the time I do spend, for not liking the person my dad is becoming, for knowing it can only get worse..
b) a bad wife, I'm constantly distracted, don't particularly feel like doing much at weekends, have no energy, can't be bothered / too tired to do our house etc, while I maintain dad's to a much better standard lol
c) a bad mother.. for much the same reasons as above.

I want to have a job, I'd like to put my hard earned qualifications to use, I'd like to relax...

but - he's my dad, and that means I'm in it for the long haul. I just have to keep telling myself that it is the disease, not him, that makes him the way he is. It's not easy, and I know that it will worsen over time, but - for now at least - I'm managing, and I'm keeping dad where he wants to be, as independent as he possibly can be, for as long as possible.
When the time comes that I can no longer cope, well - I guess we'll cross that bridge when we come to it.
 

Chemmy

Registered User
Nov 7, 2011
7,589
0
Yorkshire
but - for now at least - I'm managing, and I'm keeping dad where he wants to be, as independent as he possibly can be, for as long as possible.

As someone who has been through the 'I don't like my parent' phase - and in my case it was a phase, as the aggression did pass as she deteriorated further - I just want you to know that you are all certainly not alone in feeling that way, and hopefully admitting it in some way will lessen the guilt.

However, I was struck by your words, Earthgirl72, that I've quoted above.

You say you're keeping him where he wants to be; but perhaps consider this - would he still be saying this if he was genuinely able to understand the toll it's taking on you and your family.

My mum would have said, pre-dementia, of course not, and I would say that now to my children.

Just something to consider perhaps :)
 

Earthgirl72

Registered User
Feb 2, 2016
135
0
Thank you Chemmy. I know what you're saying. I'm lucky, at the moment my dad is fairly ok. He doesn't need any personal care as yet, just help with the rest. I have said all along, that when he does need personal care with dressing and bathing etc, that will be when we need to look at outside help.

I just feel that although I am his carer - I am his daughter first and foremost, I know that he wouldn't be comfortable with it either, so I don't feel too awful on that front.

It's a bit of a hard one really though. My old dad - well, he'd be horrified at how things are going, and yes, he'd not want any of this. New dad - doesn't want carers, doesn't want to end up being fed, so he does at least have some inkling of what potentially is going to happen. He'd rather die than that - as he told me as I was overtaking on the A30 so it was quite memorable. My quandary is finding a middle ground. I respect his wishes re: being fed, etc, but I'd not be able to step back if he wasn't capable.

Sorry I realise I have gone a bit rambly, but it does help to get the thoughts out of my head and onto paper as it were.
 

Princess t

Registered User
Mar 15, 2016
184
0
I feel the same. But having said that, my mom now has four carers a day and from seeing mom nearly every day I now see her twice a week as my sisters are making more of an effort. I am. Starting to feel more normal and not so stressed. Things do change some times better some times worse. I can't believe how I feel about my mom as she was everything to me. So I've stepped back and concentrating on my lovely family . I do feel guilty and I do love her, I just don't like her!
 

saskia

Registered User
Aug 10, 2015
124
0
North Essex
Hi chinoise & everyone else

hate reading & not replying when i know EXACTLy waht you are all experiancing

in fact -have just had the phone slammed down on me again by mum - who today hates me & my brother with a vengeance...

She received the letter from the DVLA revoking her licence & for this we get the blame ''how can i do this to her'' '' i am evil'' ''how did she produce something as wicked as me '' and so on & on..........

i know its the illness & if i can pass on anything - just remember that. Its the illness, there's not a lot you can do whilst they are in that 'loop' and in time - it will pass (we had 6 weeks of being accused of killing her dog - he was put to sleep & she was there!)

i takre it day by day now and have become quite hardened by it all.

I work FT, my husband is looking for a new job - whilst running around for my mum & god help us in the next few days / weesk as she won't be driving -so will be calling me more than the once an hour she does at the moment!

Its an awful awful disease, wwouldn't wish this on my worst enemy, let alone my mum, who i love with all my heart - but really don't like at times.

Sas

ps i am 44!!!
 

Chinoise

Registered User
Jan 10, 2017
11
0
I'm afraid I'm out of your age range, but can relate so much to your post.
Things are changing so quickly with my mum (95), every week she seems to be getting worse and worse. Fixations on things and just a loop of saying the same unbelievable ridiculous stories, starting again as soon as the story finishes. Aggression and violent outbursts all the time. Short term memory of zero.
All this makes me not like her any more too. I get a feeling of dread every time I drive to her house, before we were really, really close. I've never admitted that before until I saw it in your post, not even to myself. I don't know how to deal with this, I don't suppose any of us do but we just have to learn on the job.
Good luck with your interview!

Hi Stripeysox. Apologies for not replying sooner, I only just saw I had replies!
I didn't get the job. I'm still trying but I'm not 100% myself dealing with all this so I'm not sure how it will pan out. It is hard isnt it? and very lonely. This TP is great for seeing we are not alone, but in the daily world it does feel tough.
 

PianoMike

Registered User
Mar 18, 2017
31
0
Hull
I'm 40

I get depressed because I'm healthy and should be living my life. I live with Dad and am financially sound, so could be enjoying myself. I feel 40 is still an age to be living your own life. I won't go as far as to say I don't like Dad anymore, but it's hard seeing the aggression. I've lost the person I knew.

Doing this young also means you might be more able than those of much later years, meaning you may have more energy, which means you take on more than you need to (that's my situation) I feel like a life support machine for my Dad. I feel If I give up he will die.

It's true to say though that they wouldn't want us doing this if they knew what was going on and what it does to the carer. I think it's a hard decision.

It's not wrong to not want to do it because it just gets harder and harder. Eventually it will consume your life I feel, but I only have my experience to relate to.

Best Wishes with a hard decision
 

Sarraf1958

Registered User
Apr 16, 2017
1
0
It's so hard

I'm 60 myself and have recently started caring for my dad whose 85. Yes it is hard. He constantly forgets and repeats the same questions over and over again like asking the date and time. He's living with the family but I'm the main carer day and night. He gets up to go to the bathroom 3 times a night and forgets his bedroom. He's up at 6 coz it's light and he can't tell the time. Sometimes he just doesn't trust me and it is hard. It's even harder coz we never had a good relationship when he was younger too- no ones fault I guess just life!
It's not going to get any easier and I'm scared it might happen to me coz there are similarities. So I think I have to do the best I can but you do need to have your own time
 

velocity

Registered User
Feb 18, 2013
176
0
North Notts
Its just so hard

All I can say through the tears is 'me too' I have just found my Mum a Care Home and I miss her terribly, the pain is terrible but I realised I really was not meeting all her needs. I was exhausted.
I have asked for counselling but given a website to use, I understand its probably quicker and effective but I didn't wish to put my personal feelings and thoughts online. I will go back to the GP again.
I hate this disease.
 

Careforme

Registered User
Apr 15, 2014
53
0
I was 29 when mum first took Alzheimer's. I am now nearly 36 and my mum just recently passed away two weeks ago.

It's the hardest thing I have ever had to cope with in my life ever from start to finish and I was with mum all the time. I have seen everything possible happen and I just wish it never ever happened. It breaks my heart.

You are only human and you are allowed to feel all emotions and it is very difficult at times to keep your cool. I have no idea at times where I got the strength from to carry on but I was doing it for my mum and dad and a duty as their daughter.

I had counselling for a year and half and I was in hospital myself and now I will be going into bereavement counselling hopefully.

Please never keep all your emotions to yourself it just eats away. At times when my mum was being nice I would need go away have a cry and the times when mum hated me I would need walk away for five mins and have a cry too.

It is the hardest thing to do and watch your parents whom you love deteriorate.

You have to stay strong I have no idea how when you feel at your weakest.


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Heylowe

Registered User
Mar 15, 2015
51
0
I'm 47 and my dad has Alzheimer's - guilt is my biggest feeling! Guilt that going round 3 or 4 times isn't enough (he has a healthy wife & carers) but nothing ever feels as if we're quite doing enough for him.

Guilt for not being his carer. Guilt for what will happen in the future.

It's the hardest, saddest thing I've ever known & I never realized just how cruel the illness is. My dad is at the stage where he knows he's ill still but can't understand why he can't feed himself properly, dress himself properly.

The best thing you can do is talk about it and this forum is brilliant. Someone always knows exactly what you're going through. The support is fab.


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Grannie G

Volunteer Moderator
Apr 3, 2006
81,447
0
Kent
Hello everyone

I`m not your generation but I have cared for my mother in the past as well as for my husband .

I just want to say to those who feel they are not doing enough, you will never be able do enough so please get rid of the guilt.

Caring for someone with dementia is so difficult and so complex , I doubt any one person can meet all the needs.

When I was caring for my mother I was in full time employment. There was no way I could reduce my hours so the best I could do was attend to her evenings and weekends and , because she only lived a stone`s throw away, check on her before work.

I arranged day care for her , it was available then, I`m not sure if it is these days, but I did everything I could to make sure she was safe. One thing I could not do was make sure she was happy.

All I can suggest is you think how you would advise someone else in your position. You can care for parents without giving up everything in your lives. You only get one chance to live and there can be compromises where you take some responsibility but not all responsibility.