Hi there All - my first post on this dg

[Flowerpot]

Hi All

Well i feel very selfish making this post as you all seem to have so much love to give , but I am really struggling. My Mum has recently been diagnosed with ALS / bulbar onset and is shortly to move into a lovely nursing home very near to me and my elder sister. For the past 6 months we have been caring for her ourselves, watching her degenerate without diagnosis. We have had calls from her day and night , interrupting working patterns and family life but we have always rushed to attend to her.

She is the most wonderful Mum to me , as she started out as my godmother then adopted me when my parents died ( she and my late Dad were their best friends )

Anyway , about 7 weeks ago she was admitted to a rehab centre as she was unable to get herself out of bed , walk etc and my sister and I thought we might get a bit of respite from daily visits , only to find it is the opposite as Mum gets terribly upset if we don't visit every day.

Since her diaganosis last week I have realised that our input and support will only increase and , I am ashamed to say , I feel very angry that my children / partner are getting so little of my time after work and then visiting Mum. I am also feeling resentful that I don't have much time for me.

has anyone else felt like this , as I am horrified these feelings have surfaced when Mum is so vulnerable and I just want to be giving and loving without these awful feelings

Thanks for reading

Flowerpot

[CindyM]

Yes, Flowerpot- people have felt like this ever since ther have been too many family members needing a piece of our time and energy. I am sure our CALS will check in with advice. Everybody has been in your shoes one time or another! Cindy

[linray]

Whatever you are feeling, do not beat up yourself. This is a very hard road. My husband was diagnosed with ALS 3/08 and although I try to always be "up" for him, there are times when I am so angry that this is happening to us. I think all the time about how am I going to be able to help him, how can I cope with this. This is my first "post" but I have been reading everyone else's for a couple of months. It is so helpful to hear how everyone else is feeling. Although I know we must look ahead and be prepared, most of the time I get through by only thinking of today and maybe up to next week.

We caregivers need to support each other as well as our loved ones.

[califsand]

Hi there,

I've been in your shoes. When my Dad first moved to a care facility I visited twice a day for up to 3 hours at a time. Then I changed it to once per day and after a while I started to alternate days with my brother. At first he was afraid to be there but as he adjusted and realized that they cared about him and would make sure his needs are met, he became less anxious about me missing a day. You should discuss an every other day alternation with your sister so that way she gets to see one of you each day but you each get a little bit more time with your families and to live your lives. She's just scared. It took months before my father stopped having the nurses call me for every little thing, I know he was afraid to be abandoned, just as she probably fears. If you can cut your visits in half and slowly shorten them as well, that may give you more room to breathe and more room for her to adjust to her new surroundings as well.

On the days that I don't go (lately I got pretty much daily but that's because he has gotten so much sicker) I do call him and leave him a message. He cannot talk but I pay for him to have his own phone line and answering machine so we can all call him and talk to him. Some family lives far away and this gives them a way to let him know they are thinking about him. Maybe something like that would help her out...

Talk to your sister and see what she thinks about taking turns. If you decide to do that then you would need to tell your mum that you won't abandon her and that you are trying to find a way to be there for everyone, and making sure you have time to mother your children.

Take care!