new and worried about my nan

[persil11]

this post is about my nan and my mum, we have been dealing with my nan and her dementia for a few years now and im worried about my mum, after a long battle with the hospital and doctors and social services who didnt want to know or sim to care if im honest we have got my nan in to a care home which was so upsetting for us all but really took its toll on my mum , my nan went down hill very fast when she moved in lost a lot weight, started wetting herself and so on and is now just a shell of the woman that i have the most wonderful memorys off, she sits in a chair all the time and sims to be losing the will to go on , she no longer knows who we are and doesnt talk its "jibberish" at best she got very ill at christmas to the point where we all said our goodbyes but it turned out she wasnt quite ready to leave us all but my mum has been my worry since she took the whole thing very badly she admitted to me that a small part of her wished she had of gone and she is so guilty for thinking that , my mum is a only child and we lost my grandfather when i was quite young so my nan is the all my mum has left, she often says she dosent know if she did the right thing putting her in the home and she let her down by not being able to look after her , but my nan at christmas made us see we are very much on borrowed time , i just think it is gonna hit my mum very hard , we have had little help over the years no-one has every really spoken to my mum about anything,she is dealing with it all at the moment by not stopping, she is sleeping less and less , and i worry about her and how is going to deal with it, she will fuss over me and husband with our children , my brother is still at home and will run around after him and she is also my dads full time carer who is dealing with a mental illness himself and she works full time i see as she is trying to run away from it all if she dont stop she wont have to think about it , we have some issues over the level of care my nan is getting and when we speak to the home about it we get brushed off and social services just pass us back over to the home again , which i think is adding to my mums worries also,i want to help my mum and try and take some more of the load off her , but have no idea what or where to start
i also want to know that what time my nan has left is comfortable and that she getting the right level of care
im sorry if i have gone on here and dont make much sense i have so many thought and worries and questions , any advise we would be grateful for

 

[Nell]

Dear Persil,

What a very difficult situation you are in. Your concern for your Nan, your worry for your Mum - and trying to manage your own life as well. No-one can give you answers, I'm afraid, but many here have had similar experiences and we can all offer support.

First, no-one can tell you how long your Nan has to go. It is a mystery that none of us has an answer for. Sometimes people survive despite the most incredible odds, and others go very quickly.

Secondly, please tell your Mum that her feelings about wishing for your Nan's end are VERY normal. I think everyone has these feelings. It is not because she doesn't love her mother, it is because she hates to see her beloved mother suffer. Also, dementia is a "sentence" for the Carers as well as for the sufferer. In some ways, the Carer's sentence is the hardest, because the Carers can understand what is happening whereas the sufferers cannot.

In truth, if your Nan could go back to being the person she used to be (which sadly cannot happen), your Mum would not be wishing for her end. Tell her (your Mum) that this is the way to know that she is wanting to see the end of dementia, not the end for your Nan. I sometimes wish the end was near for my dearest mother (who is a long way from being as far gone as your Nan), because I HATE to see her very slow but defnite decline. But if I could have her (Mum) back the way she used to be, I'd do it in a heart beat.

Thirdly, altho' it seems your Nan went down hill fast in the Home, it could have happened like that too if she was still at home with your Mum. We tend to see the decline more clearly once the person with dementia is no longer in their usual surroundings. It may or may not be because she went into the Home, but the truth is, she only went to the Home when it was no longer POSSIBLE to care for her at home. Remind your Mum that this is because of the nature of this awful disease, and not because she didn't love her Mum "enough".

Fourthly, re: the Home. I can only suggest you keep on making a fuss! Sadly, most of us on TP have discovered that you need to be a "squeaky wheel" (as in "The squeaky wheel gets the most oil") when dealing with any kind of authorities. Wherever possible (and I know you too must be leading a busy life), try to be with your Mum as support when she complains. If possible, you could offer to make phone calls for her, etc. to lighten her load a little.

I'm sure others on TP will have better suggestions for getting help with the Home situation. I'm in Australia, so don't know much about UK systems.

Lastly, your Mum herself. She sounds a lot like me in some ways! When I'm very upset, worried, etc. I throw myself into things to "escape" my feelings. This leads to over-work, exhaustion, not taking care of myself, etc. etc. As time goes on, I become more and more depressed, less and less capable of managing the things I need to take care of - and feeling like I'm on a treadmill and cannot get off.

I know that NO-ONE but your Mum herself can fix this. But there are some things that work for me, that might help her too. Perhaps you could talk to her about these things and see how she feels about it all . . . ?? Only you and your Mum will know if any of these could be useful for your Mum.

1) WORK - is it possible to take part time work? If your Dad is unwell, could your Mum get a Carer's pension?

2) NAN - it may be time to plan for a "break" from your Nan. She is no longer at a stage where she will realise she hasn't seen your Mum for a while, and perhaps yor Mum needs a "holiday" from worrying about her / caring for her. Is it possible for your Mum to plan a two week break (one week isn't long enough) and could you reassure her you will visit Nan during that time to keep up family contact????

3) HOLIDAY - what your Mum really needs IMHO is a holiday. It doesn't have to be for a long period (2 weeks would do, altho' longer would be better) and she could just stay home and REST! Perhaps her doctor could give her sick leave due to stress. It certainly sounds as if she would be eligible for it!

4) HEALTH - your Mum is probably not taking as good care of herself as she could, due to stress. If you can, try to get her to see that if she keeps up the way she is, she will get really ill - and then where will everyone be?? Encourage her to rest, eat properly and take a walk each day - during her 2 week break! (It would be very hard to start taking care of herself on top of everything she is already doing. If she takes a break, she may be able to start a new healthier regime.)

Persil, your Mum is SO lucky to have you and I'm sure she realises this. My suggestions are based on what works for me, so it may be that you will realise they do not apply, or cannot work, for your Mum. Here on TP we give suggestions based on what we have personally found helpful, but we KNOW it won't work for everyone.

I hope you can find some ways to help your Mum to keep coping with her load. Remember to take care of yourself too! Every best wish to both of you.

 

[Grannie G]

Hello Persil.

I really can`t add anything to Nell`s reply to you, but I just hope you will see this as an example of the support you can get from TP members.

I hope it helped you.

Love xx

 

[Margaret W]

Hello Persil

Nell has said it all, and very well, and I agree with everything she has said. Please tell your mum that what she is feeling is the same as we all feel, we sometimes have no choice, but making the choice is caring in itself.

I, too, have issues with the home. See if you can help your mum to sort them out, usually a sit-down chat with the manager for half an hour can solve a lot, so make an appointment and tell her or him what your worries are. Don't be afraid of saying things which you think are minor - I noticed mum's clothes going missing and I thought it was minor, the manager was absolutely appalled and they miraculously appeared the following day.

I agree with Nell, if you could just make a couple of phone calls for your mum, it would help. I know my heart sinks every time I get a letter from the DWP, and it takes me a week to summon up the strength to reply to it, and often it only needs a five minute chat (thought sometimes much longer!), and if someone could just make that phone call for me, it would really help.

Your mum is lucky to have you. My daughters live miles away, and they are always offering to help but being so far away they can't.

Do your best Persil, I am sure you will.

Love

Margaret

 

[clarethebear]

Hi Persil

Welcome to TP.

All I can do is echo what has already been said, I feel Nell has pretty much said it all.

The only other thing I think I would add is please post whenever you feel the need to about anything you wish to talk about, even if it is just to get things off your chest. Here at TP people will help you as much as they can.

Take Care.
Clare