What Now?

[Broostine93]

Chrissie, you do so much for your Gran. Far more than should ever be expected of you. Having a loved one in a care home can be so difficult as they are always short of staff and rush to get things done. Emptying a commode is, however something that the staff should be on the ball with. It's basic care that if they help a resident with a commode that they should go back soon after to empty the commode and not just leave it.

The care home should be linked to a GP surgery and the GP would usually visit regularly. It might be worth speaking to them about your Gran's medication so that it can be reviewed. Is there anything in particular that makes your Gran anxious?

Rachel

Hi Rachel,

The GP only visits when the nurses ring them to say that Gran has a chest infection. They haven't been in touch with her regularly from the start, stating that they're only really to be contacted for 'general' issues, but all MND-related issues should be directed towards the palliative team.
Things that make her anxious are:
- staff 'routine' running late because she worries they will not toilet/change her into her night-clothes before the night staff come on shift (night staff are agency and always changing- Gran has informed me that they don't know how to use the hoist properly with her specific needs/pain issues). She won't let me talk to the manager about this so the 'cycle' continues.
- comfort issues. If it takes more than 1 try to get her pillows or legs in the right position, she starts shaking/crying/making moaning sounds, despite my attempts to say 'it doesn't matter how many tries it takes- we will get there in the end'
- speech issues. If I can't understand her, she gets so frustrated that she hits her head with her fists and starts crying.

[Broostine93]

Hi Chrissie

I apologise for jumping in on this thread but, having read through it, I am very concerned about your wellbeing. I really do understand that you want the best for your Gran *but* you must be kind to yourself and that means doing things to take care of yourself.

The way things are going you could very easily crack under the strain. If that happens, it could have a negative effect on the rest of your life. I know that sounds melodramatic but it’s true. And, believe me, no- one would choose to live like that.

Please, please take care of yourself

Hi Gillette,

Think I've already cracked- been running on empty since about June! I am trying to look after myself, as best I can, under the circumstances. I can't begin to count the amount of times I have spoken to Gran to tell her I am exhausted (mainly emotionally) from all of this, but she actually guilts me into carrying on this way. She cries at me if ever I say I'm not able to come at 'my usual time' for whatever reason (or similar type of issue).
I'm yet to find a solution to the problem that means she gets the care/support she needs and I get the break that I need at the same time.

[Gillette]

Hi Gillette,

Think I've already cracked- been running on empty since about June! I am trying to look after myself, as best I can, under the circumstances. I can't begin to count the amount of times I have spoken to Gran to tell her I am exhausted (mainly emotionally) from all of this, but she actually guilts me into carrying on this way. She cries at me if ever I say I'm not able to come at 'my usual time' for whatever reason (or similar type of issue).
I'm yet to find a solution to the problem that means she gets the care/support she needs and I get the break that I need at the same time.

Broostine, you may have cracked but I am talking about a complete breakdown, which is where you are headed. If your Gran won’t give you a break you really must just take one: decide you’re not going to see her one day, ring the Home to pass on a message and do something else, for a change.

Yes, it seems selfish but your Gran is being selfish by making you feel guilty, despite the huge amount you do for her. You can’t keep on doing all you do - for your Gran, work, partner, yourself and others - your mind and body can’t keep it up.

You’ve told us about the failings of the Home but you should not have to do things that they should be doing. I think you need to be quite forceful with your Gran and the Home. Things have to change or your Gran should be moved, for her own and your wellbeing. You simply cannot and should not need to fill in the gaps in your Gran’s care.

Is your partner willing and/or able to support you in this?

[Broostine93]

Broostine, you may have cracked but I am talking about a complete breakdown, which is where you are headed. If your Gran won’t give you a break you really must just take one: decide you’re not going to see her one day, ring the Home to pass on a message and do something else, for a change.

Yes, it seems selfish but your Gran is being selfish by making you feel guilty, despite the huge amount you do for her. You can’t keep on doing all you do - for your Gran, work, partner, yourself and others - your mind and body can’t keep it up.

You’ve told us about the failings of the Home but you should not have to do things that they should be doing. I think you need to be quite forceful with your Gran and the Home. Things have to change or your Gran should be moved, for her own and your wellbeing. You simply cannot and should not need to fill in the gaps in your Gran’s care.

Is your partner willing and/or able to support you in this?

I was forceful back in September whereby I outright told my Gran I would not be visiting 2 days per week (something I've stuck to and something I'm guessing is the reason I've not already hit 'full-on breakdown'). My 'plot' for doing this was to encourage her to start asking the staff to do the things she asks me to do. Instead, it kind of backfired because she made me ask her sister to go up on the days I wasn't going to be there instead. In fairness, she is going, but she isn't staying to do many of the things I normally do.
I don't really know who to talk to about the staff issues- I've not even seen the Manager (not even floating around the home) since 3 days before Gran moved there back in June. This is why I have previously reached out to the palliative team- they saw Gran and offered to speak to the manager/complain and Gran told them not to. They listened and the matters went no further.

My partner used to come and visit with me once a week, but he doesn't participate in helping to do any of the 'care' duties and, lately, he's either been ill or he's had work issues which have meant he's not been able to visit with me. I think he feels as helpless as I do, but in a different way. He listens to my 'venting' nearly every day about the situation, but he can't really do anything about it so he can't offer any advice, other than to completely cut-off. I don't think my emotions will let me do that, though.

[MNDConnect]

It sounds as though having a communication board may help things as it will make communication much easier for your Gran which will hopefully help with her frustration at being understood. If the speech and language therapist doesn't come through with the communication board then please do contact us. It's not acceptable that anyone is left without an effective way to communicate.

Is the care home aware of how anxious and distressed your Gran becomes? Whilst they can't spend lots of time with her, it is their duty of care to look after her and ensure that she is comfortable and not distressed.

Dina is right and you do need to take care of yourself. It won't do you or your Gran any good if you become exhausted and ill. It sounds harsh but sometimes you do have to say no. Don't let your Gran guilt you in to things. It's easier said than done but maybe try being firm with her. It sounds as though your Gran's main way of communicating effectively is with emotions so a communication aid may also help with this and she'll be able to tell you rather than cry and show you how she feels.

It might be worth speaking to the palliative care team about your Gran and asking them to review her medication if the GP isn't very helpful.

You're doing a wonderful job, Chrissie but it isn't up to you to take on the burden of fixing all of these things all by yourself. Please do feel free to give us a call on 0808 802 6262. There are things we might be able to help with and sometimes even just talking to someone and having a good chat about the issues can be helpful.

Rachel

[Ellie]

Chrissie,

Book a weekend away for you and the chap, doesn't have to be far nor expensive.

Tell your Gran you're at breaking point and need time out and will be into see her on xxxday at xxx time. When the tears and emotions start, say goodbye, give her a hug and go.

I understand her anxieties, truly I do, but you simply cannot, nor must not, destroy yourself.

Be brave, sweet girl!!!

Love Ellie xx

[nunhead_man]

Good afternoon Chrissie,

I am with Ellie all the way.

You are very brave and sweet and I can only wish I will have somebody like you to look after me when I get to the stage that your grandmother is in.

Noted about who suggested you take some pills and of course if those help please do not let me stop you taking them.

Also, I noted the missed the point about your Gran being a technophobe - being a digital tourist rather than a digital native myself, I often find people around me getting frustrated with me.

[Broostine93]

Hi Guys,

Rachel RE the distress- I think the carers see some of the distress, but I think they put it down to her age, rather than the condition (not surprising, seeing as they've never seen anyone with the condition before).
I had my therapy session today and I shed some tears myself for the first time in front of her today.
My therapist has very kindly said she will speak to the palliative team about my concerns and she has also said she will ask the MND nurse to come and speak to me about 'what happens next' when speech & full paralysis take complete hold (which shouldn't be long). She understood that I need to be informed so that I can stop rolling through the 'what ifs' in my head all the time and just being scared of not knowing anything, really. (She herself said she's not seen anyone go through this without a PEG before, so she couldn't tell me what happens herself at the point where food/liquid is no longer an option). Hopefully the nurse will be able to put my mind at rest a little.
She's also going to let them know that Gran is at the stage where she's constantly uncomfortable and they are going to try and persuade her to accept medication for this.
As much as I'd love a weekend away, I'd not be able to muster the courage to go, let alone 'enjoy myself and forget' if I were to tear myself away- I'd feel too guilty. In all honesty, I think we're edging towards the final couple of months (imagine if now's the time I finally decide to step back when it's getting to the hardest point for Gran- I'd not be able to live with myself 'afterwards'). So sorry for constantly venting at all of you lovely people all the time- you really are the only ones who 'get it'.

[Gillette]

Chrissie, I am so glad that your therapist is taking some constructive steps to help you and your Gran.

Absolutely no need to apologise for venting. We are all here because of MND - we seek help, information and support and we do what we can to help others. I have certainly done my share of venting!