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???????????????????

September 12, 2018

Another month has gone by, this has been quite a month of highs and lows.
A couple of days after my last post Terry was put back into the hospital with a bad infection - ecoli in the blood stream.  He was so very weak and his hemoglobin was down again.  I don't think I mentioned it previously but in the past couple of months he had 6 blood transfusions!!!  We made 7 trips to the ER because of pain in his penis and blood clots clogging up the catheter.
On that Friday, August 17 (I think) we had six doctors come into the hospital room and they talked to Terry and I about having him go on hospice.  He told the doctors YES!  He said he "Just wanted this over with."  I recorded the conversation to have our children hear it.  It was a difficult discussion but the bottom line was that there is nothing they can do to cure his cancer so it seems to be best to stop poking and prodding him and just let him live out the rest of his life with as much comfort as possible.
We came home that afternoon with antibiotics but got a call to come back because the infection was so bad.  We stayed at home with TJ and Amy for about an hour before heading back to the hospital.  They kept him while they worked to determine the type of ecoli so they knew the best antibiotic to use.  Life has become a blur, I don't remember if he was in the hospital for the next week or if we came home that Sunday.  In any case our friend, Rick, came from Westfield on Saturday and he and I went to the hospital to see Terry at 10:00 that night.  We said we would bring him a milk shake the next day.  He called me the next morning and said they were releasing him and to bring his milkshake.  He no longer needs to watch his diet!
We brought him home and the kids came to visit, we all had some Prosecco and toasted to Terry.
The first couple of days home were very busy with Angela Hospice people and deliveries of medical supplies.  We were very grateful to have Rick with us.  He provided comedic relief and household help.  Lori also came and stayed a few days, it took all three of us to get things settled and to deal with all of the new routines.
That Saturday the Hospice had a small service for Terry to thank him for his military service.  He got a framed certificate hat pins and a nice handmade blanket.  Several neighbors and family came to the service.  We have had many neighbors come by for visits and lots of phone calls and messages.  It is very nice to have so many people that care.
Last night he fell three times during the night.  I had to call EMS one time because I just could not get him up!  This is very hard!!  There are moments when I think I just can't do this anymore.  Rick went home a couple of weeks ago but is heading back here on Saturday.  I hope I can hang on that long!  I know I can call the kids but I really want them to enjoy the time they have with their dad and not have to take care of the nitty gritty.  Plus it seems the middle of the night is the worst and they need to be in their own homes so they can sleep.  This is hard enough on them without sleepless nights.
I hate that they are dealing with losing their father especially on the heels of losing their grandpa and the added stress of Cheri's handling of the will. 
When he came home from the hospital I opted for him to keep his own bed.  After his falls last night I decided to get the hospital bed.  I hope they will be able to deliver it today, I got the one with a full side rail so hopefully that will keep him in bed.  He has been up and down all day today, he is too weak to actually walk or get up on his own so I have to listen for the walker and run into his room to help him.  I get him out to the living room and 15 to 20 minutes later he has had enough and wants to go back to bed.  not long after that he wants to get back up!!  I think I may have to put the small air mattress on the floor in his room and sleep in there at night.
Did I mention he is CRABBY????
Yeah!!  I just got a call that the hospital bed is on its way!!  As soon as Angie finishes his bath I have to take down his bed!! 

Cancer

August 14, 2018

I don't even know where to start.

In April I had to take Terry to the emergency room where they did a ct scan and determined that he needed to go to another hospital so that he could be seen by a urologist the next day.  He did see the urologist and they went in to do a procedure to scrape his bladder, they found a large old tumor and it was removed.  At that time the urologist told me that he knew it was cancer but did not know if it had gone into the muscle of the bladder but he felt that it had.  He said right then that the only treatment that he could recommend was to do nothing due to Terry's Lewy Body Dementia. once the pathology report came back he said it was in the muscle and the lymph nodes.  At this point he suggested removing the bladder, prostate and kidney's and have Terry live on dialysis.  This was not an option we could live with..

I then took him to the VA hospital to see his primary care doctor.  From there we went to the urology department and they suggested taking the bladder and prostate and a part of the colon to attach to the kidney and then the urine would flow directly into a bag.  This sounded like major surgery, which it is - ranked right up there with open heart surgery!  I was told that only 50% of healthy people that have it survive, the surgery was scheduled.  I talked to lots of people, both medical and non medical and no one thought that would be a good option for Terry.

Terry ended up in the hospital for more than two weeks, we made many trips to the ER and then they said he was too weak to have that surgery, taking the decision out of my hands (Thank God).  They decided to do another scraping of the bladder to stop the awful clots that kept forming and stopping his catheter from working and draining his hemoglobin. He has had four blood transfusions since this all started!

The day of that surgery we showed up and they got him ready then decided that the surgery was not in the best interest of his Lewy Body since the anesthesia can be harmful to his already compromised brain.  It was decided that he would have Palliative radiation to "keep him comfortable".

It was almost three weeks later that he entered the Community Living Center to receive the radiation, he was to have 13 treatments.  Day two he ended up getting two units of blood thus extending his time of radiation.  The radiation did stop the blood clots in the catheter after only one treatment!!  He stayed in the CLC unit for two weeks which allowed me to go to NY to work the two weekends he was there.

On Friday of last week I brought him home after his radiation treatment.  

He was able to go to our daughters house for a party on Saturday but fell in the bathroom which resulted in him cutting his hand and bleeding a lot.  

The blood clots returned with a vengencce on Sunday and the nightmare has begun again! 

More later - I have to take him back for his last radiation treatment of this go around and we see the urology team today.

July 10, 2018 -
Another year plus has gone by since my last post. 
I have read  little of the past posts and it is inconceivable to me that so much time has gone by and yet nothing about our day to day life has changed much.  Terry continues to watch tv - game shows day in and day out and doze in and out.  He seems quite content with this and sees no reason to change.  Our conversations are much the same, I talk and am ignored, I guess that I should be used to it and for the most part I am but I keep hoping for some kind of reaction.
In January Terry's father passed away and that was very hard on him.  He has not shown much empathy for anything in a very long time but his father's death hit him.  It seemed to just put him into more of a funk.  His sister Lori calls him a lot and tries to get him to talk but he doesn't have much to say.  His sister Cheri has been in charge of Dad's estate and she has been a nightmare to deal with.  Her desire to be the executor of the estate has become a dictator and she has hurt everyone with her actions.  Pure evil and her dismissal of Terry has hurt me deeply, he may not be a conversationalist but he does still have feelings and thoughts. 
In April we were in NY when he experienced issues with urinating.  I took him to the emergency room where they determined he needed to be seen by a urologist so he was sent to St Vincents in Erie, PA where they removed a large cancerous tumor from his bladder.  We returned to MI and he has been treated at VA in Ann Arbor.  There was talk of removing the bladder and prostate, taking a piece of the bowel and attaching it to his kidneys to have his urine empty into a bag but it was determined that he is too weak for that major surgery.  His cancer is incurable.  He was then scheduled to have his bladder scraped but the doctors have determined that the anesthesia could do more damage to his brain than the surgery would help the cancer.  He is supposed to start Palliative Radiation at VA in the near future.  The plan is for him to be in a facility for five weeks for this treatment.
I have my job in NY and this is the busiest season for my area.  I went out there to work for ten days while Lori (Terry's sister) stayed with him (he could have gone but  she wanted to help me, God Bless her, and have some bonding time with her brother).  Apparently Lori had to ask for help a couple of times and this was MY FAULT!!  See the lovely note I received in a text while I was working in NY.
Along with this kind note I have seen facebook comments directed at me other judgmental things.
Not one phone call or visit from the author of the note!!  Four days since I got this!!
Well, we are ALL dying!  I must do my job so I can keep it, if I survive after Terry I will have to have my income and my sanity.  I work daily to retain my sanity. Some days are easier than others. 
I have feared since the first diagnosis that one day my life would come to a screeching halt and I believe that day has come. I now clean up shit several times a day, laundry, etc.  Lori fears for my safety, it is really nice to have someone that actually knows first hand how very hard it is to be a care taker.  The very best part was when he allowed his bitch of a sister come to visit him in our home after I said no.  That will not happen if I am here, I will not allow it and I don't think she has that much nerve. 
The loneliest is the worst, it is very hard to be alone but not really alone.  Not sure if that makes sense but it does to me.  I pray I can keep my sanity.