New to the forum and new to caring. I’m Imogen, I’m 23 and I’ve recently started caring for my 90 y/o grandfather who, as well as having Alzheimer’s, uses a catheter, and has a slew of other health conditions including leukaemia and glaucoma. I am finding it hard. I have a great family who I love very much, who I know are very grateful to me for stepping up and taking responsibility, but I find myself lying to them that I’m finding it easier than I actually am. I’m quite germphobic so I really struggle with the physical side of his care. I’m okay with draining the catheter now, but I live in fear of the day that I don’t check it at the right time at night and it leaks, as has happened with my aunt before. He soiled himself the other day and, whilst he dealt with it himself that time, I despair for the day that comes when he won’t be able to do that, as that’s just not something I would be able to bring myself to do.
I’m also finding the interaction side of things difficult. He’s been deteriorating really since I was 16, which is when I started going in to him 2x a week, but up until this year, he’d been really fiercely independent, able to cook for himself, look after himself, go to church/the pub by himself, etc. Now he is incapable of doing all of that and his social ability has gone from already diminished to practically non-existent. I was talking with my aunt last night and she remarked that, even before his diagnosis, he’s never been a good conversationalist, and he never asked you about yourself in any meaningful way, and that really struck me as true.
I get frustrated, but I try my best not to show that to him, as it’s not fair - I worked with children for years and am used to keeping my cool in frustrating situations. But I am growing more frustrated by the day. I feel guilty for leaving him by himself, even though whenever I sit with him, I’m the one putting in all the heavy lifting to maintain a conversation. I love film, but since beginning caring for him, I haven’t watched a single one because I feel like I can’t leave him long enough to sit through one. My aunt tells me it’s important to take time for myself, and I agree, but I can’t quite shake the feeling of guilt whenever I’m sat upstairs reading my book and he’s down there by himself.
Would be great to connect with others who are caring to chat, get some advice and maybe vent a little(!) x
Firstly, be honest with family because the things you are dreading will actually happen.
You need to tell family that they will need a Plan B before it comes to that point because you are unable and not willing to do that kind of care? Without wanting to disrespect your family or cast aspersion on them, don’t be left ‘dumped on’ to do it because they don’t want to do it either.
I find it odd that you are doing the caring and not your aunt when your grandfather has so many health issues, it is a lot to put on you.
I have tried to get across the fact that I really struggle with the physical side of things due to my germphobia, but they sort of brush it off. I think you are right and that I need to be more forthright about it.
My aunts, my uncles and my dad all work. I am in the somewhat unfortunate position of being the only adult in the family who is unemployed. Therefore I suppose it only feels fair that I’m the one to move in and take on the majority of the responsibility. It is hard. It feels like no one really understands or cares how hard it is.
I will have a look at the Alzheimer’s forum, thanks very much for the link. I appreciate you
You do NOT have a “great family”.
No way should you be left to deal with your grandfather.
From what you describe his care needs are so high he NEEDS to be in residential care.
You are being used as a sacrificial lamb!
Thanks for your reply. Yes, I think residential care is probably the answer at this point, even though I know he’d hate it and be really reluctant…
I should have mentioned in my post, I’m the primary carer but the others do put in. My uncle also lives here but he works all day. He will check the catheter bag first thing in the morning and get him up. He also will make his dinner. He also checks the catheter bag before he goes to bed.
My dad, my aunt and my other uncle come in once per week, usually in the evenings, and stop over, so there is someone else to provide interaction, deal with his healthcare, sort the catheter etc. But I am finding it still quite lonely even with someone being here 3/7 days, mainly because they usually only come in the evenings, so I’ve had him all day by myself, anyway.
I don’t mean to make them sound bad. It’s hard for them, too - my dad and my uncles can’t be there during the day because they work manual jobs that can’t be done from home. But it’s just bloody hard.
It’s also frustrating when people say they will support, then don’t. My cousin’s partner text me yesterday to say he would drop in today to see me and spend a couple of hours with my grandpa to give me a break. No sign of him. My cousin text last week to say she’d come over on Sunday to see him and make his dinner. So me and my uncle didn’t make him dinner. She didn’t show up. Had to make him a sandwich for tea FFS.
I know how hard long term caring can be. In 16 years the longest time my son was away from me was Monday afternoon to Friday morning. Never ever a weekend off, despite many pleas. My health was ruined forever. Don’t let this happen to you. Your family has to concentrate on the care grandad NEEDS, 24/7 care so someone is around all the time to help him.
Are the family concerned about the cos of residential care?
It depends mainly on answers to the following questions.
Does grandad own or rent his home?
Have over £23,000 in savings (Yes/No).
Claim Attendance Allowance?
Claim exemption from Council Tax?
Imogen the Talking Point Forum is very good. There will be many others in a similar position.
I can do understand the issues the physical side of caring causes as I do struggle with the incontinence pads that my husband uses. I also struggle with the dirty gowns although the pads are a godsend. But I know I could not deal with a catheter. Dementia is progressive so it will sadly get worse.
You have every right to a life and a job so please think about residential care for your grandfather. Could you start looking for a job? Maybe a training course? My library has a Job Club once a week and I would love to go to that but find it hard to leave my husband alone. Please look at your options as you are way too young to be forced into the prime caring role even with some family support.
You dropped into this by default of not having a job, what would they have done if you did have a job?
If you weren’t living with him I would have suggested a political sickbed leave of 3 - 4 days to throw them into crisis and realise the actuality of the care and have some reality.
They don’t work weekends/have days off.
When is your weekend/days off?
A break for a couple of hours is not a full carefree 24 hours to yourself or a weekend of carefree life.
Yes it is reasonable that while you are out of work you muck in as a family member to help out but to be left with your grandfather virtually 24/7 is taking you for granted, without wanting to disrespect your family, they aren’t seeing it from your angle, they just want to the best for him.
Brushing it off when you talk about your germphobia means they don’t have a Plan B, no alternatives so the blinkers go on and the head goes in the sand. It is possible that their heads are in the sand to how your grandad really is.
The support is for you, not meaning to be against your family. You will find that people can be fickle, will make offers then go off the idea later or can’t be bothered when it comes to it or have something better to do, others make offers just to look good offering by being seen to be offering. These are things you learn as you go through life.
There will be a point that he will need residential care if that isn’t already.
Imogen are you getting carers allowance?
If your grandad is getting attendance allowance, which he should be, you can claim carers allowance if you are not already.
If you are not receiving this then apply for it because it is very important because they also pay your national insurance and will do backdated credits for about 3 months I think, if it is longer than that you can try to appeal to them for it.
These credits show in your Gvt pension account and if you have gaps of unpaid NI then it affects your pension pay, you have up to 3 years to pay any arrears if you have gaps after which the chance is gone.
If your grandad hasn’t had a care needs assessment done by social services he needs to have one done and you need a carers needs assessment doing with them.
You might find an online discussion with an Admiral Nurse helpful
I am a great advocate of a carer going away for a few days, so that the family realise just how much is involved.
We all have a cut off point when caring is beyond us.
I knew that I never wanted to be involved with wiping mum’s bum etc.
I may be old fashioned (at 70) but I think it’s entirely inappropriate for a grand daughter to be providing such personal care for her grandfather!!
I understand that everyone else is working and can’t do the care most of the time.
They might just help now and then, but surely that still leaves you entirely responsible, on average, for at least 20 hours a day?
Has grandad had a Needs Assessment from Social Services?
Have you asked Social Services for a Carers Assessment?
You are perfectly entitled to ask Social Services to arrange for paid carers to come to the house to get grandad up, washed, dressed etc. in the morning, prepare his meals, and prepare him for bed.
Be very clear, that YOU HAVE A CHOICE about what you do and don’t do for grand dad.
It’s NOT up to anyone else, including grandad, to tell you what to do.
You have a right to say “No, I’m not doing this any more”.
You might be able to get charity sitters to come in once a week from a few different sources.
Just put in your region and area in the boxes in this link to find your local care support to contact them for help in the area.
For example contacts for ‘sitters’ charity sitters that will sit with your grandad for 2-3 hours a week so you can do things or go out, they won’t do any medical care or bag emptying etc, they will keep him company and maybe make him a drink.
Thanks Helena, I’ve taken a look at the forum and will sign up to it soon.
It’s really difficult, isn’t it The social/mental side is one thing but the physical side is something else altogether. I really can’t stand to do it and it’s making me resent him, which is something I never wanted.
I’ve been looking for jobs for a while. I sent off a lot of applications a week or two ago, but haven’t done any since as this last week has been really busy/difficult, different problems every day. Thanks for your kind response x
I know. I suppose they would have continued to muddle along without anyone being there which, whilst caring for him is hard, feels cruel. Well it’s funny you say that because I’ve actually been unwell this week - 3 guesses as to how I became unwell when his nibs never covers his mouth when he coughs… - and had to get to bed yesterday afternoon. I thought that might inspire someone to come over, but no…
I agree with you. They want the best for him and I’m certainly not able to give it to him. I’ve felt so ill and rundown these last few days that I’ve felt wicked leaving him whilst I’m in bed, or not chatting with him like I usually do, simply because I don’t have the energy.
I think their heads are definitely in the sand. They don’t like to face how bad it actually is. I am hearing what you are all saying and will have to broach the topic of residential care with my aunt soon. I understand why none of them want to come over. It’s horrible, and hard, and he’s not very pleasant, a lot of the time. But they can’t just ignore it.
I’m not getting carers allowance, no, so I will have to sign up. I don’t know if he’s getting attendance allowance, but looking into it, I’m sure he must be - I will check with my aunt.
I’m certain he has had a care needs assessment done because we do have a free carer who comes in at the moment. He is nice but to be honest not terribly helpful. I’m able to empty the catheter bag myself, and as he doesn’t come often (sometimes only 1x a day) I have to do it anyway otherwise it would get full. The only other things he can do is put cream on his legs or do his eyedrops, and sometimes he doesn’t even do that unless I prompt him…
Thank you, I will look into booking an appointment to chat with an Admiral Nurse as that does seem helpful.x
Well I’m glad you say this because I am actually going to go away next week to stay with friends. I’ve told all of them, so they know. It really cannot come quick enough. I’m not sure how they’re going to muddle along without me here.
There’s no way I will be able to do that And I don’t think he would want me doing it anyway, or even let me…
Yes 20 hours sounds about right Because I have to get up in the night to check and empty the catheter bag, which I hate doing because I have no idea what I’m about to walk in on when he’s asleep… My uncle is coming to stay tonight for example but he won’t get here til 8ish, and he will leave tomorrow morning at 6 for work. So I don’t have to get up throughout the night at least but by that point he’s winding down for the day, he’ll only be awake for another 2-3 hours by the time my uncle is here.
I think he has had a needs assessment, because we have the carer paid for by the social who comes in. But he doesn’t do a great deal that I don’t already do. I haven’t had a carers assessment but I will look into it.
See, that’s what I need. I need someone who can come and get him up, dress him!!! - and get him in the shower and into clean clothes, and the same in the evenings. Those are easily two of the most important things that would help me right now, but the carer that we have who is provided by the social doesn’t come in the mornings, because he has other clients. He’s never done an early morning once. But I feel like if someone could come in every morning and evening to do the dressing and the washing, it would take such a load off my back.
Thanks Breezey, I will look into this - he doesn’t mind strangers too much, I think it’s more he just doesn’t understand who they are…so that’s definitely an option.
To be honest I am frustrated that the church aren’t doing more. He’s gone multiple times a week for the past 60 years, donated countless sums of money and done hours and hours of service to support them. Yet they haven’t called or visited once. My uncle had to call the priest to ask him to visit today, which he did, an hour and a half later than he said he would be…
From what you have said this afternoon, you need to ask for an URGENT Carers Assessment as grandad’s needs have hugely increased and you CANNOT continue to care for him unless more help is provided. Say that you think residential care is going to be inevitable soon, and that should send their alarm bells ringing as they might have to fund it!
From what you have said about donations to the church, is dad comfortably off?
Are the family paying you anything for the care you are providing??
I was just about to post as Bowlingbun has - do get a review on your grandads care needs because that is not enough and doesn’t give him any care that he needs.
Ask your church - vicar? priest? pardon me for not knowing, to come and pay a visit to him.
See if that will get some help and support going.
You need to sort carers allowance urgently so you can get your back pay of carers allowance and your NI credits paid. If this is not sorted and the social workers are saying he has to go into a home ask them to support you in getting your back credits for NI.