Can anyone offer me advice on how to do my bit when I live a long way away from my mum?

I live 200 miles away from my mum who is suffering from this horrible disease. I have a school age family and work, so visits to her are limited and infrequent unfortunately. My dad is her main carer but my two sisters are local and they are amazing with the amount of care and support they give both my parents. None of them make me feel like I am not doing my best but I wondered if there was anything else I could do. There must be relatives out there who are in the same situation who could give me some guidance. I try to ring her at least twice a week but her speech is becoming a problem now and I can't always understand her. She understands me though and I don't want to treat her like an idiot by just making "hmmm" noises! I am in my early fifties and thought I could cope with most things but this reduces me to tears because I know the contact will get less and less. Oh and by the way - did I say that my dad's deaf and won't wear his hearing aid? This means that I can't even have a proper conversation with him either so that he could pass news on to her. Does this sound selfish of me? I hope not.

11 Replies

  • \hi swifry

    is your mum computer literate?

    i have just got a webcam as my cousin has problems hearing/ understandnig me and we can see each other face to face as it were

    take care and keep smiling

    love jill

  • Hi Swifty,

    It's very hard to provide the level of support you will want from a distance and I am not in a dissimilar position and my brother is 9hour flight away. My father is quite advanced now so I think the best thing you can do is to use the Internet is research what help you can give for the symptoms of PSP. My sister in law finds ways to help by coming up with ideas for addressing every day issues....I don't know how advanced your mum is but the ideas will help with her quality of life and support for your father.

    The other thing is to keep talking to them via tel, the Internet or whatever...this helps. I'm sure if you asked your sisters how you could help, they would come up with some thoughts...

  • I hear your heart and know it is very hard. Blessing to you. Have you thought of doing recordings and sending them ..once a week or twice. Just share what your family is doing...activities...what your days are like..and your love and concern. a little means a lot. You could even read a favorite book on a tape to her. Or sing some songs..have the kids participate as well. Just hearing your voices would bring her comfort. If there is resources having someone go to the house and do a pedicure/ shampoo's or cleaning the house would perhaps help the rest of the siblings.

  • Hi Swifty,

    It must be very difficult for you to be so far away.

    I know this may sound "old fashioned" but perhaps you could write to your Mum regularly? My Mum can no longer talk on the phone or use the computer but she loves to get letters or postcards from her grand-children, which Dad reads to her. The post-cards are especially popular as she can see the pictures and they also "brighten up" the place as Dad sticks them up on the wall. I'm sure ringing your sisters regularly will also help them to feel your support even if it is not "practical" help.

    I don't think you sound "selfish" at all

    Take care

    love Kathy x

  • A huge thank you to Jillannf6, Parul, Edytheanne and Kathy for your advice and kind words. Great suggestions and I feel a bit silly for not thinking about writing postcards, webcam etc. My sisters will also be pleased to know about the response I have received. Once again thank you for sharing your ideas and support.

    love Jane x

  • Hi i am the same as you i live over 70 miles away from Mum who suffers with PSP ,I have primary aged school children and also work ! In the earlier stages when Mum still had her speech we could keep in contact via the phone and a Weekly visit but when Mum lost her speech I found in increasingly hard to be a big part of Mums Life. But I send her letters the children send art work photos and letters. I am lucky like you too have a very supportive brother who lives local to Mums nursing home. Its very hard in many ways to live with PSP even harder on the love ones. If Mum still has strong eye sight try the web cam .

    Good luck and keep strong xx

  • Mum's eyesight is very poor but bright pictures drawn by the kids would be ok I think. Thank you for your advice and suggestions. xxx

  • This doesn't sound selfish at all to me. I also have a hard time feeling like I'm not pulling my wieght, but me sisters and brother are all childless, and my kids are 6, 2, and 6 monthes. I try to order a hot meal from a resturant in my parents area about once a week or so, I use online menues and the credit card.I also email lots of photoes and updates. My mom has a hard time getting out between work and caring for my Dad, so I order things I know they need, and have them shiped to them.

    Take care, your family is very proud of you I'm sure, this disease just freys nerves.


  • I love the idea of ordering food although mum has a PEG now, it would make my dad and sisters feel good. As we know, the carers need a great deal of support too. Thank you too for your help and support. x

  • Send her pictures of you and the kids, I'm sure she'd love that. She could have them at the side of her bed xx

  • Thanks for your comment Hannah. I already send photos as much as possible and have copied holiday photos onto a memory stick so that when I go down for Christmas I can show her via a laptop. Everyone who has replied to my post has been very helpful and I am extremely grateful to you all. x

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