It has been a rough and confusing day around here today. It seems that with every passing day Lucy sinks deeper into the world of dementia.
Today she can not find her way around the house anymore. She is also seeing people and things that are just not there. I have to follow her whenever she gets up because she is so unsteady that her chance of falling is great. She will also get into things and do inappropriate things if i don't keep an eye on her. Today as she was starting to undress at about five o'clock, when I asked her what to she was doing she got very angry with me. She is frustrated I am sure, but it is rough when she takes it out on me.
I am trying very hard not to get "caregiver burnout", but some days it is extremely difficult to maintain a positive attitude, especially on those days like today when she becomes hostile toward me. The Chaplain from Hospice was by today and spent about half an hour talking with her. She was very confused at the time, and so the Chaplain got to witness her as she saw people that weren't there and asked inappropriate questions. It makes me feel a bit better when someone besides me sees this behavior. I guess because I feel it is difficult for anyone to understand how bad things have become unless they experience it themselves.
I have been a Registered Nurse since 1973 and much of that time was spent with seniors, many of whom had dementia. I have tried to help caregivers with their difficulties for so many years, but I don't really think I understood until now just how difficult being a full time caregiver can become. Hour after hour sharing space with a person who is no longer in touch with reality, and that can be hostile at times is terribly difficult to say the least. I have a whole new understanding of dementia now.
I am blessed to be able to afford night staff from midnight until eight am, which allows me to get uninterrupted sleep. Before I hired them I was up every two to four hours every night. It was an impossible situation.
II have called in Hospice at this point. They have been quite a help. I say this to share the information on when to contact Hospice. They no longer have the "6 month" rule. They do take long term patients now. The requirements are different for the different diseases, but Dementia is considered one of them and it is an acceptable diagnosis now for assistance. If you find yourself in the "caregiver" position for a demented person, do not hesitate to contact Hospice to see if you qualify for assistance. Don't find yourself in a "burnout" position before you attempt to get help.
Remember, in order to be a good caregiver you must also take care of yourself!