New To Caring - 25 YO, Juggling Work With Caring

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 :slight_smile:

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.

.

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 :slight_smile:

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?

I wholeheartedly agree with Honey Badger’s post. The truth is Gran CAN’T do everything on her own any more. If she needs help to be safe that CAN’T all come from you. She has had her life, you haven’t. You can’t sacrifice yourself for her. She is going to have to accept outside help exactly because you need the reassurance that she is OK, to stop you feeling bad and guilty if something were to happen.

I can relate. My Mum (78 with Alzheimers) HATES having help in. 18 months on she still moans about it every time I see her, but I let it roll off. I know she is safe and well cared for and am able to get on with my own life. Doens’t mean I do anything. I just worked out what I COULD manage to do with my commitments of my own family and work and what I couldn’t do had to fall to someone else. I was on my knees at one point and it just couldn’t go on. It sounds as though you are at that point too.

Someone on here said this to me once, so I am passing it forward. Stop feeling guilty about what you can’t do, but feel proud of all that you do. Replace guilt with the word sadness. I am not guilty that gran is unwell and not as able as she was I am sad about these things, but not guilty because it is not my fault.

You take care. xxx

Hi Bowlingbun,

You are quite right RE the control aspect- I have tried to take a little bit more time for myself this week and it’s made a difference in my overall feeling towards the situation (mainly because I’ve had some decent-ish sleep!)

Answers to your questions below:

Where are your parents in all this?
My Mum died August 2017 (Gran’s daughter). My Dad is juggling work with caring for 2 young children and also taking his Dad to hosp/docs appointments following a heart attack + cancer diagnosis + bowel issues. I can’t ask anything from him (especially considering he hasn’t had anything to do with my Gran since divorcing my Mum 20+ years ago).

Do you live with your grandmother?
No, I live 5 minutes away from her.

Does she own, or rent, he home?
She rents via the council.

Does she have over £23,000 in savings?
Nowhere near that- she lives off state pension.

Hi Sally,

Your comment really resonated with me- I’m going to think of what you have said every time I start to feel like this is all getting on top of me. It really helps so thank you! :slight_smile:

Hi Chrissie,

In some ways, you are in a good position. Now you need to start thinking of organising Gran a bit better.

If Gran rents her property and has under £23,000 in savings, then if Social Services felt she NEEDED support (as opposed to wants) then they would pay for some or all of that support.
If gran is disabled, then she should be claiming Attendance Allowance, and might

I’m pleased that you have your own place, as some family members here have found themselves homeless when a council claims back a property when someone dies.

On the other hand, in some ways you live too close, just becaue you live nearby doesn’t mean you are always available!
Once you feel more in control of your own life, the time that you CHOOSE to spend with gran will be so much nicer.

For example, if you do housework for her, would it be nicer for both of you if she had someone else to do the housework so that you had “quality time” with her instead? Maybe take her out for a drive or a coffee in a garden centre instead?

How often do you visit? Do you have one weekend day to yourself?

Hi,

Would the OT be able to advise her RE Attendance Allowance etc. It seems that she doesn’t listen to me about things she’s entitled to or anything like that until a doctor/person of authority tells her the exact same thing (annoyingly!)

I really wish I could take her out on drives and things like that, but I can’t lift her. It’s a combination of her gaining quite a bit of weight (understandably, due to her reduced mobility) and me being pretty weak. Several times, when I first tried taking her out for things like this, she fell when trying to get in/out of my car (as she can’t put weight on one of her legs at all and it sort of buckled under her). My other half had to lift her back up both times because I wasn’t strong enough (both physically and emotionally, if I’m honest). I am now petrified to take her anywhere as I don’t feel ‘qualified’ to do so- this is massively affecting her mental health as she’s just not going out of the house at all now (except when absolutely essential, like hosp visits).

I visit most evenings after work and I’ve recently started going round one day of the weekend to do ‘bigger’ household chores for her, as I gather that her emotional state of mind isn’t being helped by her watching her house become dirty/chores mounting up.

I do always have one weekend day to myself, thankfully- I must admit, recently, the ‘free’ day has been the day to catch up on my own household chores that I’ve neglected throughout the week due to looking after Gran/her house. Just seems to be a life consisting of work, housework, eat, sleep, repeat!

Sorry btw- that turned into a much bigger rant than I originally intended!

Chrissie,

I couldn’t take my mum out towards the end of her life, for similar reasons, such a pity as she used to enjoy going out for a drive.

Has Gran done a Power of Atttorney for you?
If she doesn’t like the idea, would she agree to you applying for Attendance Allowance on her behalf? If that’s a possibility, then Google “DWP Appointee”. You manage her benefits claims then. The money would need to go into a separate account in YOUR name, but you can then transfer into into one of her accounts if she is still OK with money?

My mum found it much easier for me to deal with her money management.

Once she’s getting AA she would then be entitled to additional disability benefits I expect, then you could say “that money is so that you can afford some help with cleaning…” A win, win situation.

Hi,

No, nothing like that. I don’t think she’d go for that and I wouldn’t feel comfortable in that position- she’s still sound of mind and actually manages money better than I do. I will put forward the idea of Disability Allowance or something similar and see what she says. We’ve briefly discussed it a few months back, but this was when we thought we were going to get a quick diagnosis (and possibly a quick surgical fix to the problem) so she said she didn’t want to claim anything until she knew what she was dealing with (i.e. if it’s a permanent condition), which I completely understand.

Thank you for all of your helpful advice! :slight_smile:

I’m fairly certain the rules say that someone has to have had the disability for six months in order to claim.

I had a bad car accident that mucked up both knees. After 6 months I got DLA until I’d had two knee replacements, so it doesn’t have to be totally permanent.

A lot of money is at stake, claim asap and they will say if she can’t have it. Ring up and ask for a claim form, as long as it’s returned in about a month, it will be backdated to the day you rang - there will be a “return by…date” on the form unless it’s changed.

See if there is a local Help the Aged advisor to help fill in the form, or a disability advice service. They are there to help.

Defintiely speak to Help the Aged (I think they re Age UK now, but not sure). They were really helpful and someone who can tell her what she is entitled to if she won’t listen to you. If you can get the AA, that could definiltey pay for a cleaner, which would take the burden off a bit. It was through the cleaner that we were able to get Mum to accept other help slowly.