Pain/Agony

[Gillette]

Hi Chrissie,

You are doing a fantastic job of overseeing your Gran's care, but you MUST take care of yourself. You cannot continue at the level you are doing without it having a serious impact on your own health. You risk having a major mental or physical breakdown. Either of those could make it just about impossible to run round trying to do everything and could take a very long time to recover from. It is easy to overlook caring for oneself but it is so important.

You say that other relations are the 'visiting' kind. Perhaps you could cut back on visiting Gran, if they will be visiting. When you speak to the ward staff about Gran, you could tell them that you have had all the responsibility and done everything for Gran and need a rest. Explain that they can ring you any time and that you will ring them for updates on Gran's condition.

Taking care of yourself doesn't mean that you love your Gran any less, it means that you want to stay well for her, so that you can keep helping her.

[MNDConnect]

Hi Chrissie

I'm glad they they have found out what was causing your Gran so much pain. Hopefully now they'll be able to make her feel a bit better.

The hospital should be able to access a hoist. They may not have one readily available on the ward but it is something that they should be able to get. Especially as their current toileting solutions aren't working.

You certainly don't sound selfish. You are doing an amazing job of caring for your Gran. Caring for anyone is exceptionally difficult and exhausting both physically and mentally. This is made so much harder when you are the sole carer. Make sure that you look after yourself and take some time for yourself. Your health and well-being is just as important as your Gran's.

If there is anything that we can do then please don't hesitate to contact us.

Best Wishes

Rachel
MND Connect Adviser

[Broostine93]

You say that other relations are the 'visiting' kind. Perhaps you could cut back on visiting Gran, if they will be visiting.

I tried that one last week- she had a load of visitors throughout the day and I said 'if I'd have known they were all coming up, I'd have left you to it'. Response I got was 'no, I prefer it when it's you'. Lovely compliment, but totally missed the point. I know a breakdown is coming- I just feel such immense guilt if I leave her because I know she's silently crying out for me, if that makes sense.

[Ellie]

Hi Chrissie,

As Dina said, you need to look after YOU or you won't be any use to anyone It may be a case of 'tough love' for your Gran but you NEED a break...

I go for respite care so my family get a badly needed break from me and they get to recharge their batteries. I notice a positive difference in my husband's mood after the break and it does me the world of good too.

As for your Gran's loo issues, if the hospital hasn't sorted out something today, speak to the PALS people (Patient Liaison Service) in the hospital. As Rachel said, a hoist should definitely be an option. If PALS is useless, phone MND Connect.

I wonder if she sat up, with legs over side of the bed and used a She Wee and some container, would that work?

You're right to worry about a UTI - I'd also be concerned about dehydration and what about her bowels!!

Take care.

Love Ellie.

[Broostine93]

The hospital should be able to access a hoist. They may not have one readily available on the ward but it is something that they should be able to get. Especially as their current toileting solutions aren't working.
If there is anything that we can do then please don't hesitate to contact us.

You would have thought so- they were adamant that they didn't have one in the AMU when we asked for it, though

With regard to your last statement, Gran does have an OT and palliative care team- I've also finally got an appointment with the MND/Palliative psychotherapist which should help at least to stop me unloading all of my stress/upset/issues with my poor fiance.

Thank you for replying!

[MNDConnect]

Hi Chrissie

They may not have a hoist in AMU but they should be able to get one from the hospital stores or from another ward temporarily whilst your Gran is an inpatient. Ellie's suggestion of PALS is a good idea if the ward won't resolve the issue. There should be signs around the ward with PALS contact details or any member of staff should be able to give you the details. They act as a liaison between the hospital and patients/families.

Best Wishes

Rachel
MND Connect Adviser

[Broostine93]

Hi Chrissie,

As Dina said, you need to look after YOU or you won't be any use to anyone It may be a case of 'tough love' for your Gran but you NEED a break...

Last time I tried the tough love approach, Gran screamed at me and threatened to phone the police on me for not leaving the house (this was back just before diagnosis and I was pleading with her to go to A&E as I thought she had a spine issue). I'm terrified she will cut me out completely if I force the issue.

As for your Gran's loo issues, if the hospital hasn't sorted out something today, speak to the PALS people (Patient Liaison Service) in the hospital. As Rachel said, a hoist should definitely be an option. If PALS is useless, phone MND Connect.

I wonder if she sat up, with legs over side of the bed and used a She Wee and some container, would that work?

You're right to worry about a UTI - I'd also be concerned about dehydration and what about her bowels!!

Take care.

Love Ellie.

I never even thought about PALS- so helpful, thank you!

I don't think the over the bed thing would work- Gran either falls backwards if she sits on the edge of a bed or she slips off the edge completely. I hate this disease!!

Bowels are another story- she's apparently constipated (again). I don't know what the plan of action is for that, but it's only been 3 days and her 'normal' is 2 so not quite panicking about that yet.
They had her on a drip of sodium chloride all day yesterday so that's combatting any dehydration, thankfully!

[Broostine93]

Hi Chrissie

They may not have a hoist in AMU but they should be able to get one from the hospital stores or from another ward temporarily whilst your Gran is an inpatient. Ellie's suggestion of PALS is a good idea if the ward won't resolve the issue. There should be signs around the ward with PALS contact details or any member of staff should be able to give you the details. They act as a liaison between the hospital and patients/families.

Best Wishes

Rachel
MND Connect Adviser

Thank you, Rachel! I will definitely be heading to PALs if the issue hasn't been sorted by the time I get to the hospital later

[Terry]

Hi Christine,

You are between a rock and hard place. Life is hard enough with Mnd if you accept all the equipment and communication devices but if you don't then you end up not being able to communicate or use them.

It's good that everyone is aware that she has not been for three days as longer could be a problem.

I hope that she appreciates what you're doing for her, even inside if she doesn't show it.

Love Terry

[Gillette]

I tried that one last week- she had a load of visitors throughout the day and I said 'if I'd have known they were all coming up, I'd have left you to it'. Response I got was 'no, I prefer it when it's you'. Lovely compliment, but totally missed the point. I know a breakdown is coming- I just feel such immense guilt if I leave her because I know she's silently crying out for me, if that makes sense.

Hi Chrissie,
It makes sense but I think you need to remember that you are the one who has done so much for your Gran. It's understandable that she likes to see you BUT would she want you to have major health problems because of the amount you do? I don't think so. I'm not exaggerating about the health problems: I have had both major mental and major physical health problems because of my previous caring roles. Please try to put the guilt you feel aside so that you can take time out to care for yourself.

Last time I tried the tough love approach, Gran screamed at me and threatened to phone the police on me for not leaving the house (this was back just before diagnosis and I was pleading with her to go to A&E as I thought she had a spine issue). I'm terrified she will cut me out completely if I force the issue.

I would suggest that you don't tell her that you won't be visiting - that should avoid the histrionics. Alternatively, you could ring the ward late in the day/evening and make up a story about something stopping you getting in to visit that day. Don't actually ring your Gran because that would give her the opportunity to use emotional blackmail again.

[Broostine93]

Hi Terry,

I think she does and that's kind of the problem- the role reversal has been really hard for her to take. The guilt she feels about asking me for so much help makes her lash out when she realises that it's all getting too much for me. I think she's got an internal battle where she feels she needs me, but she doesn't want to rely on anyone. I can certainly see it from her point of view, but one of us is going to lose out on what we really need (either that or lose our rags with each other in the form of a blowout!)

Hi Gillette,

I know that's where I'm headed- been really struggling with the mental issues for a while now (I'm ashamed to say that I have a couple of drinks most nights just so that I can switch off to get some sleep- I'm someone who was vehemently against drinking after Mum passed from chronic alcoholism so it does worry me that I'm turning to it for 'help'). The physical issues, I'm sure will come later. Is there any kind of sensitive way I can put these things to Gran without her feeling guilty? I am very much struggling with how to word these kinds of things.

[Gillette]

Hi Gillette,

I know that's where I'm headed- been really struggling with the mental issues for a while now (I'm ashamed to say that I have a couple of drinks most nights just so that I can switch off to get some sleep- I'm someone who was vehemently against drinking after Mum passed from chronic alcoholism so it does worry me that I'm turning to it for 'help'). The physical issues, I'm sure will come later. Is there any kind of sensitive way I can put these things to Gran without her feeling guilty? I am very much struggling with how to word these kinds of things.

Oh, Chrissie, your situation makes me feel so sad for you. I really don't know if talking to your Gran would help. That gives her the chance to vent at you, which is likely to make you feel even more guilty. If you don't visit one day, would your fiancé go with you the next day to support you if your Gran starts shouting at you? I think you would really benefit from knowing you have someone on your side.

[Ellie]

Oh, Chrissie, your situation makes me feel so sad for you. I really don't know if talking to your Gran would help. That gives her the chance to vent at you, which is likely to make you feel even more guilty. If you don't visit one day, would your fiancé go with you the next day to support you if your Gran starts shouting at you? I think you would really benefit from knowing you have someone on your side.

I couldn't agree more Dina.

My heart breaks for you Chrissie.

Love Ellie.

[Kayleigh]

Hi Chrissie,

I think it's essential that you have time off for a holiday and more time to rest and relax. For your own well-being, things can't go on as they are - perhaps tell the rest of your Gran's family that it's no longer feasible for you to visit her every day and also you will be having a holiday soon. Hopefully they will take on some responsibility for visiting your Gran - perhaps there could be a visiting rota, so your Gran knows that there will be someone visiting her on most days, even if it can't always be you.

Even if other family members don't want to visit her regularly, some time off for you might be something that needs to be put to your Gran as already arranged, rather than something that is up for debate.

You shouldn't feel guilty for needing some essential quality time for yourself. Obviously you love your Gran very much, but, for your own health and well-being, there needs to be a balance with how you spend your time when you are not at work -,and it would be unfair of your Gran to expect you to devote the majority of your spare time to her.

I hope your Gran feels better very soon and things get much better for you as well.

Love Kayleigh x

[Deb]

Oh Chrissie, what a heartbreaking situation,

I am sure that your Gran knows how much you love her and inside, she appreciates all you do. I can only echo what others have said about having a proper break and a rest. You would really be doing it for your Gran because you wont be able to help her if you are poorly and it's hard to make any decisions if you're exhausted.

Thinking of you and sending hugs,
Love Debbie x