WHAT???

Just a moment to rant.........

I received a text asking if I could do something in a couple of weeks and How is my husband and myself.
I answered that I can't make any plans because my husbands health is bad, it is not a secret that he is on hospice and has been for almost two months. I went on to say to this person that we have not head from in almost two weeks that he has not been out of bed four of the last five days and that he can no longer stand and is talking to people that are not here.
The response was "Why didn't you tell me?"
I responded: "Tell you what?"

Should I not have answered the original question with that much information?  Is it up to me to call each and every family member and friend to tell them each and every change in Terry's health?  Should I be on the phone all the time?  Does anyone really want to hear all the details of taking care of someone on hospice?  Does this person not remember how things happen when a loved one is on hospice? 

I took care of my mom on hospice a few years ago with this same hospice company.  I guess I learned a few things and I have had friends and family that have done the same.  Being a caretaker is exhausting, you would think that people would realize this and maybe ask how you are once in a while.  It seems that most, certainly not all, only ask or care about the patient.  I get it and I feel guilty even thinking it but what about me?  Some of my friends and family get it and take care to help me and I so appreciate it. 

It is very hard to be on alert every moment of every day to the needs and wants of your husband that can not take care of himself.  It is hard that everything is your fault - the chair is too hard, the TV went out, the meatloaf is too sweet, the dog is too loud, the toilet is stupid, the wheel chair is too small, the bed is too high/low, it is too dark/light, his glasses aren't right, slippers are too slippery, etc.
I do understand that it is awful to be stuck in a chair or bed when you were used to walking all the time.  I get it that food doesn't taste good when your taste buds are shot.  I get that seats are hard when you have no fat on your body. I get it that when your eye site is almost gone it is hard to see.  I know all of this and I empathize but non of it is my fault!!  I just try to be pleasant and smile but it is not easy!
I love that people come to visit him, it is really good for him to have outside stimulation and to know that people care.  What I don't like is when someone comes, sits in a different room than him, goes in to say hello to him for 5 minutes and then proceeds to tell me how great looks or sounds.  Or better yet give advice on what to feed him or to get him out of bed or any of the other many suggestions when I am doing the absolute best I can.
No one, except for a dear friend that has stayed in the house for weeks at a time, knows how it is to sleep with one ear open EVERY night, to jump every time you hear a noise of any kind, to try to find his favorite foods so he will eat more than a bite or two, or to walk into his room just to make sure he is breathing when he has bee asleep for 14 hours.  how about having the conversation that the doctors do know what is wrong with him and can't fix him.  to have to tell him many times a day that he is dying and it is awful each and every time.  I hear him yell out in the middle of the night and race into his room to have him tell me he didn't say anything or he thinks it is morning at 3 am. 
When he was a little bi stronger we had a 36 hour period where he would be in the living room for fifteen minutes and decide to go back to bed only to come back to the living room twenty minutes later telling me he had not been out of bed for days.  During that 36 hours he fell 7 times, once I had to call EMS to get him off the floor and the last time I called our daughter.  he still tries to get up a lot but is way too weak, God help me but that is better than having him walk around refusing help and then worrying that he will fall and crack his head open or break a hip.
Today he got a sponge bath from an aide and then we went for a walk around the block, him in his chair of course!
Today my daughter is coming over in the morning (it is 12:30 pm) so I can go grocery shopping and get my hair cut.  I may even go to the gym for a work out, I need to exercise my back!!  This will be the first time I am getting out of the house in six days!!! 

Thats it, just needed to complain a bit so I won't dwell on that stupid comment!!  "Why didn't you tell me?"  REALLY???????????????????