24/7 Carer - it’s hard!

New to Carers Connect
1

Hi All,

I find myself ashamedly struggling with a recent escalation in caring duties. My mum moved into a retirement flat round the corner from us around 8 years ago and settled well, despite multiple falls, two episodes of cancer, random TIA’s and a myriad of medical emergencies. (We know a lot of the local paramedic crew now :joy:)

Since the start of this year she has been in and out of hospital several times for various neurological emergencies which culminated in a sub dural brain haemorrhage which developed into an emergency and was operated on at a regional specialist centre. She is 90 this year. She survived the operation but has lost all confidence, strength and parts of her memory. She also suffers from incontinence. We decided she should move in here with us to see how well she recovers. It is looking extremely unlikely she will be able to go back to her own home now.

We are settled into the routine now and I feel trapped. I am the only driver in the house, since my husband had a stroke and subsequent seizure a couple years ago. I also work from home but it is becoming a juggle to keep her happy, safe, entertained, keep up to date with work and keep myself sane!! I collapsed at home with labrynthitis due to stress a couple months ago. Am still suffering after effects :roll_eyes: My husband is asking for us to have a holiday but I have no idea who could look after mum… she is adamant she is not going into a home/ respite … the guilt is overwhelming.

Sorry for long post… can’t really offload much on my kids… they help when they can but they are all working full time and i don’t feel it’s fair to dump my troubles on them… I guess I’m doing ok but right now I’m struggling with being a 24/7 carer.

Are any of you in a similar boat? Thanks for listening… I feel better writing it down and sending it to the ether! :pray::smiley:

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It is NOT mum’s choice whether to go into a home,.

it is YOUR choice, and that of your husband’s whether or not to continue caring for mum. It is not HER home, it is YOURS.
Either she goes back to HER OWN HOME, OR SHE GOES INTO RESIDENTIAL CARE.

Staying with you is NOT an option now, after your collapse. She is going to need more and more care until she dies.

I would suggest that your husband steps in and says that you have both tried your best but IT IS NOT WORKING. Of course, she won’t see any of this, as a very elderly person she is entirely “self focussed”. It’s nothing personal against you, but a trait of the elderly in general.

Mum is now paying the price for a very long life, this is not YOUR fault.

Does mum own, or rent where she was living? Who is looking after it at the moment??

3

Hi Angela
It’s quite obvious that YOU cannot carry on doing everything. So , as well as the residential Home option, you could look into getting paid carers to come in regularly, or day centres for Mum to go to, or adopt a more multigenerational family approach. Who says Mum is solely your problem? Probably only you.!
It’s very different caring for someone for a short while as they recover, and a very different kettle of fish for long term 24/7 where the outlook is just more deterioration and medical issues. It just cannot be done by one person alone. So the choice is yours as to how to spread the load.
One tenet we repeat often on here is every time you hear yourself saying or thinking the"guilt" word, change is to “sad” as that is what is , just sad. You are not guilty that Mums age has got her into this situation, you have not caused her medical conditions, it’s just sad that shes very old (I have one of 96) and that great age brings a need for greater care and help.That level of care requires a team of people, either family or paid for, or a combination
You must put her NEEDS and your NEEDS before her WANTS.

How all this is funded depends on her financial situation. Btw, the hospital should not have discharged her without a care package in place. They probably spotted a dutiful, complaint daughter and cut corners. Time to start standing up for yourself, and for hubby and for Mum.

Kr
MrsA

4

A different perspective. As a child and grandchild of people who had the same attitude as you I felt rather excluded and unwanted, not an important part of the family. Objectively it’s simply not true that the younger generations don’t have the time, willingness or opportunity to help. They are generally younger, fitter and healthier and more able to help but can be excluded by well intentioned older generations.

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We lived midway between both sets of parents. Each told doctors, hospitals, social workers that they didn’t need any care as we would do it. We dealt with bowel cancer, prostate cancer, strokes, heart attacks, joint replacements, heart failures, thrombosis, multiple admissions, visiting major hospitals for stays lasting months, as well as caring for our son with LD and running a business. My husband DIED and I developed a life threatening problem. My consultant told me 25 years without a holiday didn’t do me any favours. In helping others too much I lost my chance to realise all my own dreams.

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Thank you very much for taking the time to reply all of you!

I guess I have got myself here by default. I chose a career in nursing and midwifery when I left school and I have spent my life looking after everyone else’s parents and others so now when it matters most I would love to give her as happy and full a life as I can.

Your suggestion regarding day centres is a good one. She goes once a week to the one I was running as a volunteer before my circumstances changed so she has good friends there and enjoys it. She also attends a lunch club once a week for an hour or two.

The thing is, on her return from these social encounters she has tales upon tales of this one and that one who have had bad experiences with their carer or who had a terrible time in respite at this or that home…I know this to be true as I volunteered at both of these clubs and heard the conversations over many years… it is inevitable when you fear your independence is slipping away, but it takes a while to talk her up when she comes home. Of course, on paper, having people around all day to quash the loneliness and fearful thoughts and have someone to call when you need something plus activities laid on sounds like a fab life! It’s a shame there are so many sad stories on the outside. But it is true. without her own personal experience, she won’t know for sure - tho I suspect she will find as many things wrong as she can to punish me. But maybe we need to bite the bullet and give it a try??

She has her own flat - it doesn’t have a warden, tho she does have Careline installed. I am taking her back there today for a couple of hours to see how she does.

My children jump in whenever they can… my youngest took over my role in visiting her every day in hospital when she had her brain surgery as I was on strict bed rest myself at the time. In fact she helped for so long she fell behind with her uni work and now she is up long into the night trying to make her final deadline next week. My kids understand very well how much work is involved in 24/7 care. They went through the same with my husband when he had a brain haemorrhage a couple years ago… 3 weeks in itu … every day we were told he could die… he didn’t but over many months of rehab and beyond we have had to make many adjustments - life is very different now.
We are a very close family and they always help where they can. I am sorry you had the experience of feeling shut out, @nhshater

It is true, we live once as an adult and twice as a child. Has anyone any experience of Crossroads?

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Crossroads ?

Now within the Carers Trust ambit ?

https://carers.org/press-release/crossroads-care-40-years-and-beyond

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In 2012, Crossroads Care and the Princess Royal Trust for Carers, another charity working with carers, decided to merge and became Carers Trust, which is now the largest charity for carers.

Today Carers Trust works with a series of Network Partners, which is comprised of the services from both Crossroads Care and The Princess Royal Trust for Carers. They form a unique network of 116 independent carers centres, 55 Crossroads Care schemes and 99 young carers services. Their objective is to provide information, advice and practical support for all carers across the UK.

Nationwide … mixed reviews ( Try Trust Pilot / CQC for individual centres ) like any organisation with many centres …
good for the few that can afford them.

( We had one rep on the forum a little while ago … offering respite services … at a price ! )

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You talk about “making mum happy” and I think that is where you may be going wrong.

My mum was housebound for many years, with severe arthritis and a host of other problems. Dad was a scientist and worked away from home a lot, when he was away, I did anything mum wanted/needed. My youngest son was brain damaged at birth, but I was still expected to do an awful lot. As mum got older, he needs increased drastically, until she died a few years ago, at the age of 87.

Despite many horrible experiences, widowed at 54, life threatening illness, car accident that left me disabled for years, I would say that I have a happy, positive outlook on life. I always have plans for the future, and try not to dwell on the past.

Counselling made me realise that it was NOT my job to make mum happy, ultimately we are all responsible for our own happiness. Looking back, it is difficult to remember anything that made mum happy apart from the plants in her garden. She took photos of her flowers, but none of me or my sons!!

Counselling helped me set my priorities clearly. My son had to come first, because he couldn’t speak up for himself, mum could. Mum didn’t like that one bit, but she had to accept it.

Counselling also taught me that I should be proud of what I could do, not constantly guilty for what I couldn’t.
I also had a right to a life of my own, to do my own thing.

I would suggest that you viewed your role with mum as care MANAGER not provider. She needs to move out of your place, so look after your husband is enough for you. You can support mum by phone, make sure carers do what they should do, take her out in the car for a trip.

Don’t worry about the day centre “Moanfest”. We would all love to have eternal youth, but we cannot give this to our loved ones.

Once you accept your own limitations, and firmly set your priorities, making sure there is time allocated just for you as well as husband and mum, life will be so much easier.

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Angela,

I didn’t intend my comments as any sort of criticism of you, merely to let you know that children want to be involved so you would not try to exclude them by good intentions, which is what I understood, wrongly as it turns out, from your initial post.

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Hi Angela
Why “talk her up” when she comes home?
Any marketing person will tell you that more people complain than say they are happy or pleased by a product or service.
I have noticed with my own mother (who used to be the soul of discretion and politeness) get progressively more moany, complaining and critical. So much so she can be very embrassing -like a toddler e.g “that lady is soooo fat” in a loud voice in said person’s hearing. :blush:
Ditto my 92 year old neighbour. I caught her having a right bitch fest at a coffee morning the other day and when i said thats not like you, she said “ive held my tongue all these years and am enjoying the freedom to say what I like now”.
Talk of homes, care and funerals is what makes many an elderly persons day.
Sounds like Mum knows which of your buttons to press to get your attention and your guilt going.
Rather than listening and spending time talking her up, try shutting the conversation off and moving off to something else. Repeat daily for a few weeks to get out of the habit.

The perfect care home does not exist, neither does the perfect sweet natured, healthy, outward looking very aged person. Settle for ‘good enough’ and you will both feel so much better

Kr
MrsA

11

Anyone would struggle with doing anything 24/7, let alone caring. I manage to cope with 21/7 though.

Those three hours of being away from home in the afternoon are a complete relief from the relentlessness of it all. You ought to try it. Don’t even try working out next week’s menu or shopping list, just switch off and forget everything that’s back at home. That’s what I do.

I usually get out in the New Forest, with my camera if it’s sunny, I photograph butterflies and dragonflies mostly, or anything else creepy crawly if it’ll hold still for long enough.It’s engrossing enough that I can forget everything else, it keeps me sane, (or as sane as I’ll ever be). If it’s raining, I’ll probably still go, but I might just sit in the car, take in the view and read a book, usually Sci-Fi or Fantasy, they can both just take you away elsewhere.

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Aw, thank you everyone for taking the time to comment! Yes, I agree, a year of counselling really helped me too…and getting out for a little while works wonders, especially in this glorious weather!

I’ll come back to you soon and let you know how it all pans out. Thanks everyone for being such lovely people xx