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New To Caring - 25 YO, Juggling Work With Caring - Carers UK Forum

New To Caring - 25 YO, Juggling Work With Caring

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Hello Everyone,

I have no friends to speak of and very little family, so I really just needed to vent to like-minded people who understand what I am going through- apologies in advance for the long post.

I am currently the only carer to my Grandmother. She is 80 this year and has Drop Foot, which causes her severe mobility issues. We are trying to find the cause of the problem in the hope that it can be fixed, but it is an extremely slow process.
In the meantime, we've been able to finally access the OT, who are being helpful in that they're providing some equipment to help my Grandmother get around her house more easily. However, this seems to be the only help we're getting from them.
I am actually the most concerned about both my Grandmother's and my own mental health. I am not strong enough to lift or catch her if she falls, the risk of which increases massively if I try to take her out anywhere in my car (she can't seem to lift her foot high enough to allow her to get into the car, meaning she nearly always falls). This means that she isn't getting out of her house at all- we are both terrified of something happening if we attempt it. Aside from essential hospital appointments, she has not been out of the house in months and it is massively taking its toll on her mental state. The GP has not given any consideration to this whatsoever.
In the last year and a half, my Mum (her daughter), her sister-in-law (to whom she was close) and her brother have passed away, so she is grief-stricken as it is- the disability is just the 'nail in the coffin' so to speak.
I am spending all my free time keeping her company/cleaning her house/going shopping for her/doing other chores for her or researching ways to try and help her (via finding equipment and via something to try and identify the cause of her issue so I can inform doctors). I am juggling this with full-time work. To say it is draining the life out of me is an understatement. I am constantly worried about her and I feel a deep sense of guilt whenever I am not with her because nobody else is available to really go and even spend time with her, let alone actually help her with anything.
She will not consider a paid carer (trust issues) and she certainly wouldn't consider anything like a care home so I feel we are stuck in this horrible limbo-type place. Needless to say, as the months are going on, we are both getting more and more frustrated with the situation and we are very snappy with each other.
I had even phoned an ambulance the last time she had a fall (which is frequent) and, because she hadn't caused any further injury, they didn't take her in to hospital- just checked her over and left. I really am at the end of my tether and don't know where to turn. This is beginning to ruin my relationship with my fiance because I'm simply never at home and, when I am, I have been so busy helping my Gran that I just spend my time at home doing housework or sleeping.
I was just starting to get over the loss of my Mum when my Gran started developing Drop Foot and this has sent me plunging back in to despair because it feels like there is very little support for either of us. During my research, I've found that this condition can be reversed the earlier it is treated and, knowing that we're waiting up to 2 months between hosp appointments at a time, I find infuriating.

Has anyone else been in this kind of situation before?
Hi Chrissie and welcome to the forum.

As has been said on other threads recently, it's really quiet here at the moment.

You are doing an amazing job for your Grandmother and she is very lucky to have your support when you are both grieving the loss of your mum. However, there are a couple of things you should consider. First, no-one has any legal duty of care for another adult. You may protest that of course you want to care for your Grandmother, and that's admirable, but knowing you could give up if it all got too much may just be the get-out clause that will keep you sane.

Second, though it sounds harsh, your Grandmother really is wrong to refuse outside help. She's had 80 years of life; she has no right to use up your youth and your opportunity to have a life with your fiance. A well-worn saying on the forum is Needs Trump Wants!

If you haven't already done so, I'd recommend you get a Needs Assessment for her and a Carer's Assessment for yourself. Then proceed from there depending on her financial situation - there is a lot of information here to help.

Just a final thought, would it be feasible to take her for an outing in a taxi designed for the disabled?

Wishing you all the best.
Hi StarFish,

Thank you for posting a reply- it's really kind of you to take the time to do so.

With regard to being able to stop caring when it gets too much, I think it's in my nature to take care of others and I know that's something I definitely need to work on to ensure that I care for myself before I am even capable of properly taking care of my Grandmother. I do think that I would feel awfully guilty if I stopped doing what I do for her, though. I am hoping she will change her mind about having a daytime carer, but time will tell on that one.

I am so incredibly grateful for your suggestion regarding the disabled taxi- I hadn't even given it a thought before. I am hoping to be able to convince my Gran to let me take her (at least to the hospital) via that method (though, when I mentioned it to her yesterday evening, I was met with a 'no, it's just more cost' (apparently my buying aids for her etc. is a barrier as she has been used to funding herself her entire life, so I'll try and work on that, as well).

Massive thank you :)
There's plenty of different orthotic aids available for "Drop foot". You need to talk to an Occupational Therapist, probably via your Gran's GP.
Hi Ayjay,

The first OT my Gran saw said she was going to get her an AFO for her Drop Foot, but this was about a month ago and nothing has been mentioned on the subject since then.

As I'm always at work when the OT visits, I can't be there to ask on progress and my Gran doesn't like to push anyone for anything- it's very frustrating.

Thank you for the recommendation, though- it's much appreciated.
Chrissie,

I can see the love you have for your grandmother and acknowledge the difficulty in not having much family around. So what I say is not meant to offend/upset anybody. We aren't about that.

It comes from the heart of another that has already lived your life.. I looked after a late-grandparent in their own home and did the work/care shuffle before as well at your age, I'm still a carer today for other family members.

In a time where people struggle to actually receive the help they need (when asked for), I believe your grandmother is displaying selfish behaviour in refusing it, and taking advantage of your selfless nature which is actually often a common trend as we get older.

You may feel strongly about things now, but how about in 5 years down the line.. or 10, 20 even?
What is your contingency for looking after grandmother if something happens to you? Who fills the breach?

You have a kind soul but please do know, its not viable for even a healthy/young person to fulfil a demanding job and do the care thing in the long run without support. Alot of people can't manage it WITH support. Something whether its health or work related always gives.

Theres nothing that says you can't be involved in keeping your grandma safe but nowhere does it say you should give up your life to do it.. you are 25 you need to be able to live for yourself too or before you know it those years are gone

Best wishes
Chrissie_1902 wrote:
Wed Feb 13, 2019 12:47 pm
Hi Ayjay,

The first OT my Gran saw said she was going to get her an AFO for her Drop Foot, but this was about a month ago and nothing has been mentioned on the subject since then.

As I'm always at work when the OT visits, I can't be there to ask on progress and my Gran doesn't like to push anyone for anything- it's very frustrating.
A one month wait is nothing, we took delivery of a new wheelchair last week, the OT at the hospital where my wife was incarcerated from Feb. to May requested a new chair for her last April.

It's also quite possible that your Gran rejected the idea. Have you asked her?

You do have to push for everything, shout and then shout louder if nothing happens. It's not how it ought to be, it's not what most of us want to do, but it's sometimes the only thing that works.
Hi HoneyBadger,

I've been thinking the exact same things you've put in your comment for a couple of months now, so I do totally agree with what you've said. The horrible thing is, I know my Gran would try and do everything on her own if I wasn't the one around to help- that's when the guilt kicks in, personally. I couldn't bear the thought of something happening, knowing I could have been there to prevent it or at least help after it's happened (if that makes sense?)

Ayjay,

I understand that a month seems like a short amount of time, but the Drop Foot is progressing so quickly that a month is everything in terms of mobility difference (i.e. 6 months ago, my Gran could walk, unaided, for maybe half a mile. Now, she can't take a single step without a walking frame). I did ask and she hasn't refused it- she just won't push once she's already asked once kinda thing.

As with the majority of everyone else on this forum, this is really just a safe place to have a vent about everything and I'm so very grateful that there's people here who understand the frustration etc.

I thank you both for your input :)
Chrissie_1902 wrote:
Thu Feb 14, 2019 1:24 pm

Ayjay,

I understand that a month seems like a short amount of time, but the Drop Foot is progressing so quickly that a month is everything in terms of mobility difference (i.e. 6 months ago, my Gran could walk, unaided, for maybe half a mile. Now, she can't take a single step without a walking frame).
This is why you have to shout, and then shout some more.

My wife has MS, three+ years ago she could still walk a mile with just a pair of sticks. After catching Shingles,within three days she couldn't get out of a chair unaided and has never really walked properly since. She spent a couple years shuffling around with a Walking Frame but since a fall last February, nothing works any more.
Chrissie,

Try to think of your role as care ORGANISER rather than provider.

I was a "dutiful daughter" caring for a disabled mum for many years. Only counselling when I as 60+ made me realise that as far as mum was concerned, I still behaved as a "good little girl", never saying "No" to mum. She had trained me from childhood so subtly that I never realised. As the years went on, I was expected to give her more and more of my time, until I felt like a slave. Counselling for me was life changing.

As an adult, the ONLY control anyone has over your own life, is the control you let them have.
You are your own person, no one can tell you what to do, or force you to do it.
You have free choice, but have been manipulated by others for their own ends.

Gran doesn't have a choice of carers or you. It's carers or nothing.
A good grandmother would want to see a grand child to spread her wings and fly, and thrive, and love, and travel, and enjoy everything the world can offer.

A bit more information would help me to help you.

Where are your parents in all this? Do you live with your grandmother?
Does she own, or rent, he home?
Does she have over £23,000 in savings?