Hello all!
I am a caregiver to a delightful young lady (51) who resides in a nursing home in the DFW area. She was dx'd with Marfan Syndrome while in High School; which, BTW, lead to her mother finally getting properly dx'd with the same thing! As her body degenerated from that she continued to live her life as best she could... had a career, friends, animals and a great social life! Then few years ago she was told she has OPCA and she quickly lost a lot of the abilities that most take for granted at that age... her eyesight worsened, hearing lost, memory, muscles, UTIs (she has permanent cath)... you all know the drill. She now languishes in a bed with 24/7 caregivers at hand... in a nursing home and on hospice. She has at least one anyerism that she has opted not to fix as it would extend her life... a fate she doesn't want. I have become friends with her POA and best friend and try to keep her up to date on this lovely lady's daily life. The friend visits her every week... at least once and she also has many other good friends who come often to see her. In some ways, she is a very lucky lady and, obviously, in others... not so much.
I tell you about her because I have come to care for her a lot; I am her advocate, and a vocal one and seek info and insight to what is happening with her. I have read some on OPCA but I guess I would like to hear from others who actually know what she is going through and how she feels. She is most times highly medicated with opiates and can get very incoherent and combative and just down right irritable.. who could really blame her? I can usually tell whether she has had just too much meds and that is making her 'out of it'.. talking nonsense, hallucinating etc... or if it's the disease. She has so little control over anything in her life anymore that she likes to try to control us caregivers.. even if it's not in her best interest, so we have to be compassionate, patient, strong and, most of all... diligent. Please tell me things about this disease that I can't learn in a text book and/or things that will help her remaining days be as good as they can be. 'They' say she can't last much longer but 'they' have been saying that for a long while. Those that truly love her want her suffering to end and especially before her insurance and funds deplete so that her level of care can stay as high as it is now. I just lost one of my dearest friends to cancer, so I know how they feel and the level of love it takes to feel that unselfish. If she still could get in her chair and go out of that little room once in a while.. but she will never be there again and her life has shrunk to almost nothing now. Thanks for listening... or reading and thanks in advance for any insights. I can still get a smile out of her once in a while and that has come to mean everything.