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Sometimes I just need to vent....

Suze83

New member
Dec 2, 2021
6
0
Hi, lurked a little in the forum as looking for support.

18 months ago I had to quit nursing as my mother, who has ischemic heart disease and had early onset dementia (its now full blown 😂) and my aunt, who has lived with her for nearly 40 years, had a stroke and ended up with frontal lobe dementia secondary to the cva.

My brother lives 200 miles away. He financially managed their money as we discovered she had run up 27k of debt - couldn't even explain where from by that point! So, we decided to sell her house and they would move in with my husband, me and the children. He relinquished control of the finances to myself and the small amount of equity went towards investing in a larger property.

Having worked in nursing and care homes I know the constraints of provision. I know the well meaning neglect that comes from looking after 42 residents - not to mention the endless relative input when they don't have 24 hr knowledge of mum/gran/dad/grandad and just exactly what they've been like to deal with. So it seemed much more logical for me to look after them.

But wow! Does anyone else who looks after their parents directly - and I don't mean the ones who have carers but actually does the caring 24/7 - ever just want to go arghhh?

For instance, my mother's instance that she has nothing wrong with her but can't work out how to use an advent calendar, make a sandwich, use just small change, is incontinent, forgets who we are and is insistent that chernobyl happened in the 1950s and that given the opportunity my husband would leave me in a heartbeat for her - oh and that surely he grew up in the 1940s and 50s?

Then my aunt, who can't remember anything. Words. Sentences. What she had for breakfast that day. Whether she's eaten. Whether she's hungry. What she likes, what she doesn't like. And she is mostly just angry. So angry. That I'm her jailor. Or I'm a bitch. Or this or that.

My mum is convinced that she could go into town by herself, but she can't remember where she is. Prior to moving in with us, she completely forgot to take her medication. She thought she'd already had it. And then the best bit of that is she frequently just makes up a story either for cover, convenience or confusion!

It's so frustrating. Like another level of frustrating. When I worked in the nursing home, or when I encountered patients on the wards or in a and e, I had so much more patience. Mostly. Even if in my head I was silently screaming.

It's soooo hard. They couldn't handle a care home as the level of care they get at home is akin to a newborn dependency! They have a choice of breakfast, lunch and tea plus snacks. Drinks whenever they want. Television of all kinds, books and magazines (when they can remember how to read or how to use the remote). I try to take them out once a week - although lately I just haven't as my auntie complains it's too cold or pointless and my mum ends up getting lost.

Less than 2 years ago they could provide granny childcare. Now, I do everything....

I do care for them, my brother doesn't see the change necessarily as he only visits 2/3 times a year.

I've put my career on hold to give back the care they provided when I was a helpless newborn. But it is so hard. So very very hard.

Sigh. Anyway, yes, just wanted to rant a bit. See if anyone else, who actually provided the hands on, 24/7 relentless no respite or carers, care of their relatives could relate.

Thanks 🙂
 
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asriela

Registered User
Oct 17, 2021
26
0
@Suze83. I care full time for my mother who is 92 (we are the only 2 people left in our family) and is, I think, quite advanced with vascular dementia - she no longer even likes the TV or music and has to be told how to do everything and I mean everything.

My mother has the same level of incapacity as your mum and aunt and i can assure you I go a lot more than "aarrgh" and you have 2 of them! It is very difficult when they need so much care and yes, they are just like newborns (or at least how I imagine newborns are as I never wanted and never had children myself - the irony of spending all of one's fertile years avoiding having helpless things to care for only to be hit with much worse at 57 when you are tired!) I have problems with the poo and the pee and the challenging personal habits although it is incredible what you can get used to.

The other day my mother presented me with a small bag full of poo which she had removed from the toilet. I now accompany her to each and every visit to the loo - and given the amount of tea and biscuits she consumes, there are loads of visits. I dread a poo visit but I have been told that constipation is even worse!

As far as I am concerned, please vent away and I, for one, will do my best to always reply. The people here are great and very supportive.
 

canary

Registered User
Feb 25, 2014
16,776
0
South coast
I did 24/7 caring for my OH, who is nowhere as bad as either of your mum or aunt and there was onlu one of him. Nevertheless, it brought me to carer burnout. My children read me the riot act, told me that they didnt want to lose me too and arranged carers to come in and help OH was and dress. They have been a godsend. OH wasnt keen on them to start with, but he has got used to them and now quite enjoys having them.

The differences between working in a nursing home and looking after a relative in your own home are
1 - you dont have any emotional baggage when you are looking after someone in a nursing home
2- you have the back-up of colleagues in a nursing home, but in your own home there is only you
3 - in a nursing home you have set shifts and you know that, however tiring the day is, the shift will end and you can go home, put your feet up and relax, but when you are with someone with dementia 24/7 you are on constant high alert and cannot relax even for a second
4 - if you are having broken nights (and most of us do) then you are tired before the day even starts and that makes us crabby and irritable - which the person with dementia picks up and mirrors.
5 - there is just no escape

What you are trying to do is just not sustainable in the long term. We all need respite and help with the load. Caring for someone with dementia is unlike anything else - working in a hospital or residential home is no preparation for 24/7 caring. What is stopping you getting in extra help, carers etc?
 

Suze83

New member
Dec 2, 2021
6
0
@Suze83. I care full time for my mother who is 92 (we are the only 2 people left in our family) and is, I think, quite advanced with vascular dementia - she no longer even likes the TV or music and has to be told how to do everything and I mean everything.

My mother has the same level of incapacity as your mum and aunt and i can assure you I go a lot more than "aarrgh" and you have 2 of them! It is very difficult when they need so much care and yes, they are just like newborns (or at least how I imagine newborns are as I never wanted and never had children myself - the irony of spending all of one's fertile years avoiding having helpless things to care for only to be hit with much worse at 57 when you are tired!) I have problems with the poo and the pee and the challenging personal habits although it is incredible what you can get used to.

The other day my mother presented me with a small bag full of poo which she had removed from the toilet. I now accompany her to each and every visit to the loo - and given the amount of tea and biscuits she consumes, there are loads of visits. I dread a poo visit but I have been told that constipation is even worse!

As far as I am concerned, please vent away and I, for one, will do my best to always reply. The people here are great and very supportive.
Completely understand where you're coming from, I had a menopausal baby too so this is not how I pictured my forties going and my husband is 59 next year - yeah, pretty certain he didn't plan any of this bit either 😂

It is amazing what you get used to, and I know, from my working life, it will get more emotionally wrenching as they progress. But yeah! Where do they even put so much tea and biscuits?! I don't think I could eat as much food as they manage to consume - mind you, they do forget pretty much in the next breath.

It is hard, but at least I know in my heart I'm doing the best I can. Which I'm sure you're doing too. And, we're none of us alone in doing it. So same goes for you, feel free to vent if you want to, I can completely empathise and sometimes it's just the little things that set us off 😊
 

Duggies-girl

Registered User
Sep 6, 2017
3,008
0
I cared for my dad for a couple of years full time. By which I mean twice a day every day, breakfast, dinner, medications, appointments, shopping, lunches and many other extras like cleaning, gardening, washing, sorting out his finances and I am sure the list goes on. I obviously had to stop working then as it took all my time and I was driving around like a mad thing but I did get to go home most nights.

Then dad became ill and had three weeks in hospital, huge decline and 24/7 care required from me. Dad had cancer as well as alzheimers (double whammy) The cancer was easy to deal with other than the last two weeks before he died but the alzheimers, well you know all about that. Dad did not know that I was living with him, his short-term memory was so shot that if I left the room for one minute he would think that I had just turned up 'Hello I didn't hear you come in but nice to see you' I found that difficult.

Dad was fully continent so no pee or poo problems right until the end so I was lucky there. Dad was also very easy going, easy to look after, witty and pleasant to be with but days and weeks with only the odd bit of respite wore me down. I don't know how I did it other than I knew that dad was dying and it would eventually end but it was the hardest thing I have ever done.
The boredom of watching the endless repetitive TV the umpteen 1000 piece jigsaw puzzles along with being totally isolated from everything and everyone else was wearing to put it mildly. Frustrating does not begin to describe it. That coupled with the constant fear of some uncontrollable event like a fall or another illness is mind crippling. Nobody knows until they have done it.

I agree with @canary it is too much for one person and you need to get some help in,
 

spandit

Registered User
Feb 11, 2020
340
0
But wow! Does anyone else who looks after their parents directly - and I don't mean the ones who have carers but actually does the caring 24/7 - ever just want to go arghhh?
<joke alert>
No. Never. You are an awful person... :D
</joke>

We have a team of carers and I still want to go arghhh on a daily basis. I don't know how you could cope with the 24/7 demands - I don't think you should have to. Your parents didn't produce you as insurance against being in a home, they wanted to raise you so you could go into the world and be your own person.

Rant away, but please book some respite care before you destroy yourself.
 

lollyc

Registered User
Sep 9, 2020
673
0
Yep, identify with all this.
Only yesterday I told my mother she was the child I'd never had, and never wanted!
There are so many 'aarghs' everyday, but my current bugbear is eating like a toddler - food on fingers, clothes, table,floor (thank God for the hoovering dogs). Sometimes it's the little things that wind you up the most.
@Suze83 , one of the most annoying things is being told by nurse/ carer/doctor etc., that they understand, because they've dealt with dementia. As you are finding, nothing prepares you for the reality of doing this 24/7!
 

jennifer1967

Registered User
Mar 15, 2020
7,938
0
Southampton
it is a whole different ball game from being a paid carer looking after those with dementia in a care home to unpaid carer on your own. at least when you are paid carer, you can go home, handover responsibility to the next shift, talk to other adults you are on shift with. if they need you in the night, theres a nightshift that is paid to be awake in the night and can sleep when they get home. im not at the stage to need carers but it feels that you are judging carers that do have carers going in or have PWD in a carehome. some have their own health problems caused by working in care. either way, its hard and there is also the emotional investment that is not the same in carehomes.
 

asriela

Registered User
Oct 17, 2021
26
0
This is what is so great about this forum - there are always people who understand and can make you smile and feel better. Thank you all so much.
 

DreamsAreReal

Registered User
Oct 17, 2015
216
0
@Suze83 I think it’s incredible that you’ve done this for 18 months and for two people with dementia, not just one! I’m not a 24/7 carer now but have my pwd 24/7 for a fortnight, over the xmas holidays and once for 2 months when she broke a leg. That was bad enough, but 18 months?! I couldn’t do that. I think you’re amazing. Rant all you like on here, I hope it helps a little! 💐
 

Suze83

New member
Dec 2, 2021
6
0
Thank you, this has really helped. Honestly.
I haven't tried to judge those with carers in by the way, I completely understand the logistics of this and the economics and also the mental health burden of it haha! I am in a lucky position to be able to not have paid employment at the moment due to the pwd.
I know it isn't all bad, there are little highlights ( I was teaching them how to play cards. Again. It was hilarious and a little sad too, but they were really happy to. Even when mum hid a hand of cards and demanded a new hand - I could see them on the table but she still insisted. So played cards with 45 instead of 52 at one point!)
My husband is a really great support though too, he's a nurse as well so we bounce off each other well.
Thank you again though. I know where to turn for a little bit of relief now I can hear people in the same boat.
🙂
 

CharlotteScr

New member
Dec 1, 2021
4
0
Huge respect to you @Suze83 i can see this coming down the track for my family so it's helpful to me to read your experiences. Love your story about cards- my Mum recently really enjoyed sticker books with my sister (like the 'Sticker Dolly Dressing' ones)- they each took a book and worked through it together. Mum's sticking was not as accurate ;) but she got some satisfaction from doing it. Sadly seems like she has lost the concentration for that now. She also enjoys 'matching pairs' games on a tablet/ipad.
 

Suze83

New member
Dec 2, 2021
6
0
Huge respect to you @Suze83 i can see this coming down the track for my family so it's helpful to me to read your experiences. Love your story about cards- my Mum recently really enjoyed sticker books with my sister (like the 'Sticker Dolly Dressing' ones)- they each took a book and worked through it together. Mum's sticking was not as accurate ;) but she got some satisfaction from doing it. Sadly seems like she has lost the concentration for that now. She also enjoys 'matching pairs' games on a tablet/ipad.
Every day is so different with them. I hope all goes well for you with her in the future.