MIL had not passed any urine from Monday until Thursday (today). Yesterday hospice and the Dr. said that her kidneys were failing and the end was near. Today, they say that they were premature since she urinated. They've got a catheter in her (which I disagreed with). Could this be the culprit? If it is her kidneys, which could be if her lungs are filling up with fluid, how long can she go without passing urine? Her brother just passed away 2 months ago with Kidney failure, pneumonia related ALZ.
I am sorry that your MIL is in end stage. If her kidney is failing, it could be the end stage although she can still urinate for now.
Usually if it is not due to severe stage, it may be urinal blockage or bladder issue that prevents her from urinating. A catheter makes her uncomfortable but it is part of hospice. Some memory units don't have feeding tube service, but they always can do the catheter. It is really up to her and the family to decide if she needs it.
If it is temporary, I think it is OK, but if it is permanent, you need to find out about her health directive and the family's wish on this one. It is not up to other people to decide for her catheter. My late FIL had the catheter for 1 month due to prostate enlargement and he didn't need the catheter in the end because it was under control afterwards without any catheter.
My husband says that once hospice is in place, they get to make the decisions. I honestly think the family has some choices. The catheter has been in for 2 months. Hospice said that her kidneys are failing due to blood test results and then they said maybe not. There's always a different story between the nursing, family etc that it's hard to keep up. I think this is definitely a wake up call for the family to get things ready but they still won't. As if doing something would precipitate her passing. Oh well.
Mitsy, both of my parents were on Hospice and I was consulted on each decision that was made. Many times they would explain the situation and options, then asking me what I wanted to do. Yes, the family does have choices. Hospice does have rules that they follow. There are treatments and test that they do not cover. But even then you have the choice to follow Hospice recommendation or go in another direction.
Sometimes it is difficult to tell exactly what is happening. The lack of urine is a crisis situation. It can be caused by a long list of reasons. It could be from dehydration, medication, urinary tract blockage, kidney failure.. and more. They may think they know the cause. Then with other symptoms and test decide it is something different. Unless all family members are getting the same explanations from Hospice, there can be the added complication of information being misunderstood or repeated incorrectly.
I do understand your last statement. There are some that accept the inevitable and want to be prepared when the end comes. There are others that do not want to accept what is coming and would rather wish (no matter how unrealistic) that the inevitable will not happen. Getting things ready will NOT change the outcome one way or the other.
What I will say is that getting plans in order can make it easier for all. Those in denial will be in distress afterwards. It will be even harder to make those final plans. When Dad died in March 2010, nothing had been done. It was 5 days of confusion as we tried to write the obituary (leaving out things we wanted in it), picking out clothes, finding a casket (availability became a problem), and finding the pall bearers we wanted. There was a lot of conflict as to what to do. Decisions were not easy to make in that time of stress. When Mom died New Years Eve, her obituary had already been written and only the date needed to be inserted. We already knew which newspapers we wanted the obituary in. The clothes, casket (preordered), pall bearers, and other details had already been decided on. It was very simple to just put the plan into action. In the days following Mom's death, there were no big decisions to make and no conflict. I sent out a request for the obit to be written. It took two request but one sister finally stepped up. It was then sent to everybody via e-mail for approval. A few corrections were made and it was done! That actually got the ball rolling. I then sent out a selection of four outfits and ask which one. After one answered, the other two chimed in so they would not be left out. My sister actually handled the casket selection next. It seemed that once the ball was rolling it just finished the journey. So rather than just saying... we need plans... ask somebody to do something specific and go from there
My recommendation is for every family to do this when entering the later stages of dementia. The sooner the better. It's not wishing for the end but being prepared when the end comes.
It is quite natural that some families don't prepare like that literally. My husband and his folks didn't seem to see it coming but they knew my late FIL was very sick. My husband knew it in his head but in his heart, he was not quite prepared. I sort of knew about the end that was coming but didn't really talk to my husband about it because I don't think I could change his heart.
Prepare for the end in your head, but keep the hope. Even if the little thing like taking off the catheter makes her die earlier, it is for comfort care. It is about her comfort, not about how long she has to live.
One thing we do need to keep in mind is that Alzheimer's and some other types of dementia are incurable and untreatable. Medical procedures may prolong the inevitable but it will not significantly alter the course of the disease. You have to weigh the benefits against the side effects of any treatment. Included in those side effect is the comfort of the person with dementia.
I recommend final arrangement be made during the late stages before the last days and days after. Having such conversations does take the stress of decision making off the last days. It can also give clarity. Accepting death can allow us to better live the time that is left. Accepting death is not giving up on hope. It changes the focus of that hope from time to quality...