Coping with blindness

[buckden]

My mother is in her mid seventies and was this week almost totally blinded because of undiagnosed GCA.

What makes my mothers case so upsetting is the fact she is a fiercy independent widow. she is very active, fit and healthy and works tirelessly for the charitable good of others primarily voluntary care for disabled and the aged. Her hobbies are cross stitch and needlecraft and a love of gardening.

I would really appreciate hearing from anyone who has been in a similar situation and and share what we as family carers can expect and advice to help her regain a quality of life.

[2watsons]

So sorry to hear about your Mother,i due to GCA I,Lost sight in one eye six months ago i am in late seventy,s ,still having problems coming to terms with it as i am sure your Mother is ,it is a fear of mine each day will this one work .I found THE RNIB very helpfull .

Good wishes

[DorsetLady PMRGCAuk volunteer]

Buckden, sorry to hear about yet another case of undiagnosed GCA, there seems to be too many of us around. I lost the sight in one eye in April this year, and was diagnosed by the local hospital A&E dept. Unfortunately, I didn't find RNIB particularly helpful, they didn't have much knowledge of GCA, nor have much advice on coping with one eye, but they seem much more organised if you have complete sight loss. You must register your mother as blind with her local council social services as they should be able to give some assistance. You don't mention what dose of steroids your mother is on, but if it's high, then they may cause many side effects including mood swings which can be very upsetting for both patient and family (I speak from experience), but as the doses decrease they do lessen. Good luck to you all.

[2watsons]

Hi DORSET LADY, from Noreen ,how are you coping with one eye ? i have some good days ,then next worry as thing sight is not as good ,always improves through day and my eyes water sometimes ,looks like my hair is getting thinner as on Methtrexate .and of course steroids 10 mg reduce in a month.

Things are improving ,,have more good days .It was quite a shock when it happened ,,am surprised how long it is taking me to come to terms with it and feel more like my old self .

WELL SOME OF MY OLD SELF .

Take care advice .

[vickiland]

My mother is nearly 82 yrs old and was just diagnosed with GCA per temporal biopsy 6 wks ago. Mother lost one eye and with in 3 days even in the hospital on high dose IV Prednisone lost the other eye. Now my mother is completely blind. She also has always been very independent and is a widow and has lived alone for 17 yrs. Her life before blindness was Computer genealogy to which she did day and night, needlepoint and crocheting baby blankets. Now our family is at a loss as to what we can help mom learn to do using her hands and not her eyes. It has been so sad and really a nightmare for us all. Mom has been so depressed and cries a lot. She is on 60 mgs prednisone per day. We see tons of specialists. But now since she is on her 6th week of waking up in the DARKNESS we simply don't know what to do to get her involved so she does not think her life is over. We have hired 2 ladies that live full time with mom and take care of her. They are more like her companions now. We first came home with 24/7 nurses since mom was so distressed over this plus it caused her to also get colitis 2 times now and end up in the hospital 4 times since JAN. Mom has never wanted anyone to live with her BUT she is scared now and can't live alone. There are so many changes in our lives. It just breaks my heart that she can't see my face or her beautiful lawn and flowers in the Springtime this year. But we keep praying for our miracle. If anyone has any suggestions of how to help mom find things with her hands she can do I would love to hear them. She is not a joiner of groups and we wanted to make sure she could live in her own home. One last thing mom seems to get disoriented sometimes after the steroids. She has short term memory loss and sometimes talks out of her head. Then she is back to normal. Is this the GCA or the high dose steroids. Our DRS keep telling us her MRI's are fine that it is the meds that make her that way????