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macular degeneration - Carers UK Forum

macular degeneration

For issues related to specific conditions and disabilities.
Hi any tips on helping care for someone who is losing their sight
Hi Nicola, welcome to the forum. I'm afraid I don't know much about macular degeneration, I'm sure there will be someone along who has dealt with sight loss. I see your nan has mobility problems, I'm afraid this is very common in the "very elderly" a term applied to those over 85. My mum has passed away recently, she had mobility problems due to a rare spinal condition. First she used sticks, then a Zimmer, then a wheelchair. There are various aids and adaptations which can help caring. Mum had carers 3 times a day as her condition worsened. The best thing was her bath seat, a special rise and fall seat which meant that even when mum could only just stand, she could still have her daily bath. I hope you are getting help so that you can still have a social life.
Hi and welcome.

My mum had MD for several years and my dad was developing it. Both sadly now passed away.

Mum joined the local association for the blind when she was diagnosed in her 80s, and went to a meeting each week. They did all kinds of crafts and games that she wouldn't have thought of trying herself. They even had an Easter bonnet parade and competition! She'd bring home the bits she'd made to show us - just like we used to do when we'd made things at school! :D

Mum had been a keen reader, knitter and was always doing jigsaw puzzles so losing her sight meant giving up a lot. The association helped her to adapt and suggested equipment that would help. They may have come into the house to suggest ideas for equipment too as she had various bits and pieces like red buttons on the washing machine and cooker to help identify how far to turn the knobs. It was also good for her to get out and be with others who understood. Through them she linked up with audio newspapers and books and use the local library for these too which gave her another purposeful trip out each week with my dad. She got games like dominoes and cards made for the blind and Connect Four was great with its distinctive colours.

Mum was ex army and we discovered she could join St Dunstans too. They taught Dad how to put Mum's food on the plate in the same layout each time so she would know what was there. They also showed him how to guide her by the elbow...but they much preferred holding hands! :D

The things Mum missed most she told me was seeing colours in nature and our faces. It made me realise how much we take for granted.

Suggest you check out the local association for the blind and see what they do in her area.
Jx
Thankyou for the advice , my nana was a very active lady until her hip replacement two years ago during which she had a heart attack and a stroke in theatre . She was in icu for 7 weeks so never got the correct physio required so has no muscle tone in her hip , we mainly use a wheelchair but she can get around her flat using a walker, I spend every day with her from 9 till 3 and 7 till 8 , we weredoing great till she started losing her sight now im worried and dont know how to help her x
Hi Nicola,
When (if ever) did nan have a "Needs Assessment" from Social Services? Have they done a "Carers Assessment" for you? Many services are not advertised, so the only way to find out everything available is to contact SS. Is there a local Carers Group or Carers Worker in your area? It would be worth making contact. Unfortunately, every area operates slightly differently, so it's impossible to be more specific. Think about asking SSD to cover the evening hour, which would mean you had far more time to enjoy yourself and live a life of your own. This isn't selfish, just a recognition that nan won't last forever, and you don't want to end up with no friends when your caring role is over. I just wish I'd followed this advice myself!!!
My MIL had macular degeneration too, and my experience was very similar to Jugglers.
In my area there is an organisation called 4sight http://www.4sight.org.uk/ I realise that it is not nationwide, but there is probably something similar in your area. They too came to MILs home and put red dots on her washing machine and microwave (she had stopped cooking by then and only used the Wiltshire Farm foods) and put fluorescent strips on the kettle handle and fridge door so she could see where they were. They loaned her a bright reading lamp to help her with reading. Even though she had already bought a magnifier it did help.
They also had various social events, but MIL didnt want to go to them.
Bowling bun - in response to your advice we have had none of these things and nana has no help from anyone but me , I gaveup my work as a chef to help nana 2 yrs ago and have never had nor asked for help or advice since , not that I would change it I love being there for my nana , its only now she is using her sight that I feel like I need some assistance and guid just dont know who to ask
Many of us find that we can care OK for many months or even years, then something happens which leads to asking for help. So first step, contact Social Services. They will come out and see what nan needs. Your carer's assessment should be done separately, away from nan so you can speak your mind, and if you get emotional, nan doesn't need to know. I suggest that you ask for an urgent assessment, or you will wait forever. Don't let them send you a self completion form for the Carers Assessment, insist on a face to face meeting.