I must work full time. My husband is both disabled and on hospice care. He is frequently irritable, understandably. We have no family here. He is 65 and on Medicare. It is me, myself, and I caring for him. My brother is here until June 24th, when he will return to the Seattle area, and I will once again be on my own. We qualify for exactly nothing because of my job. I have 6 vacation days left this year. As he weakens, especially once my brother is gone, he will be alone all day, and I am gone 12 hours per day. That scares me. In the night if he needs someone, it is me, so my sleep is frequently interrupted, and as it is, even when not interrupted, I sleep with one ear open, so to speak, so I am beyond tired most of the time. I am not doing anything well. I am exhausted and do not know where to turn. Yes, he has a social worker assigned, but as we don't qualify for any assistance, her hands are tied. My work performance is suffering, and at home I have little time to do anything but dishes and laundry. I garden out of necessity, but it is also my peaceful place that is also my therapy for keeping my sanity. I don't know what to do. He is weakening, but he is fighting with all that is in him to live. Our daughter lives here (Chicago, IL), but she is a single mom with two children, a job, a mortgage and an AirB&B. She helps as much as she possibly can, given her own living circumstances.
Lots of times when I hear things like what cccquilter is going through it puts me through a whole range of emotions.
Frustration.... that it is so difficult to get the help that is wanted and needed.
Anger.... that we have to force or are forced to do things like divorcing a person so that they qualify for aid, or impoverishing someone or at least spending down a good portion of savings or penalizing one spouse that has saved, particularly if they entered into the marriage later in life.
Sad ..that in a great country like ours there is sometimes no option but for a working spouse to quit their job in order to stay home to care for a family member. That often results in loss of self by way of removing socialization at a time when it is needed, loss of income and that may result in loss of home, or at least the possibility of having to go on some sort of welfare. Assistance with food, housing, utilities....
While Utopia does not exist there is no reason for ..
Children to go to bed or to school hungry
For our elder to go to bed hungry
For ill people to not get help that is needed
For families of people that need 24/7 care to go through additional stress when it comes to trying to find ways to get the help that is needed.
My list could go on but enough for now....
Stepping down off my soapbox now.....
Best wishes you really need respite or you are going to crash
Maybe I missed this in the previous posts, but doesn't hospice offer you some respite time, cc? In your situation I would definitely take it!
Just a tip, say that you are in crisis mode and that you can not handle the situation.
As I understand it, not all hospices have this service to relieve the family and it's only for a limited amount of shifts, but it is something.
Check to see if your hospice offers "crisis care" shifts.