Odd combination of categories, I know! First of all, I want to extend best wishes for the holiday season....Merry Christmas & Happy Hanukkah to all here who celebrate these special occasions (please excuse the spelling). Now, things are hanging heavy over me. Dan has not been doing well. He's had trouble with UTI's, so had to go for a cystoscopy. Not a pleasant experience, I can tell you. I was with him, along with his aide...poor guy really got more & more upset & agitated, started hollering & shaking uncontrollably. Doctor couldn't get a clear picture of the bladder, but thought he saw a little something there & a very small kidney stone. So he was scheduled for an out patient surgery so they could look deeper (I have canceled it). That same night I got a call that he had been taken to the ER, the uncontrollable shaking again, ashen color, drop in blood gasses. He was in the hospital for 5 days, being pumped with antibiotics & fluids (the lack of which I blame for bladder problems, going on for the last several years). He was septic. Went back to the facility, was doing okay (what else can I say), but he fell leaving the dining room, hit his head on the door jamb. No physical ill effects from that, nothing broken, no concussion, etc. BUT, he seems to have taken a nose dive with the AD...not eating much, mashing up his scrambled eggs till they are almost mushy, things like that. He doesn't seem to understand even a very simple command, such as lift your arm to put it in the sleeve of your shirt. They have him in a wheel chair when he isn't in bed, to prevent him falling again. He still knows who I am, after a few tries. The question is....do I allow the outpatient surgery to see if there is something going on in his bladder, possibly something that could be removed during surgery? Or do I say no & wait for this infection to happen again, which I'm sure it will? I feel like if I approve, he will have a terribly difficult time afterward & decline. If I refuse it, am I going to be contributing to more infection & probable pain down the road? Having to make medical decisions for someone else sucks!
Mim, two years ago the wife of a dear friend of mine was confronted with the decision of whether or not to allow surgeons to implant a feeding tube in her husband. He was probably stage 6 or 7 with vascular dementia and had been hospitalized repeatedly over several months for pneumonia, which they finally figured out was because he was aspirating his food. When I discussed this feeding tube question with their pastor, who was also their very close friend, his immediate response was. "For what purpose? To buy a few more days or weeks of a tortured existence?" The wife bravely made what I believed to be the right decision, declining the feeding tube, and he died peacefully after about a week in a wonderful Hospice facility where family and friends were able to visit and interact with him pleasantly during his increasingly rare periods of wakefulness. I also recall how hard it was for me to stop urging my DW to take another bite of food or sip of water there at the end -- finally accepting that, at best, these were only postponing the inevitable by another day or maybe week. Tough decisions we have to make, and I'm sorry you find yourself in this position!
You are wise to question having it. Infections and anesthesia we all know can cause them to slide downhill. So many decisions you have to make: pushing fluids, food, antibiotics - how long do you keep trying them if you don't have the outpatient procedure which in itself could cause him to slide downhill.
I forget if he has a history of bladder problems. Has he had the procedure before? What does the doctor expect to find? If he finds something, do you treat it or just let it go? Without the procedure you don't have all the information. But if he does have it, do you treat it or not? It is sort of like the delemma if our spouse gets cancer, do we treat it or let them go?
Mim, I so sympathize with you. So much of what your husband is going through is what my partner is going through too. She too is unable to comprehend even simple directions, walks only with assistance, mashes up her food, and is really uninterested in eating much of anything unless it is a cookie. And that is only the beginning of a list of changes that have been occurring since Thanksgiving. She did make decisions a year and a half ago which is truly helping me face the tough decisions you too are facing now.
We both worked in nursing homes, she as a nurse and I as an Activity Director. And we both knew well the pains and trials of end of life care, particularly dementia. And we discussed quality of life over quantity of life many times. Stage Seven of a seven stage terminal disease seems to be the time for us to emphasize comfort over treatment. So that is the direction we are taking. Not sure if this is any help to you.
One recommendation I have made to others is to talk with a hospice program now. You don’t have to go that way, but it can be very helpful to have their perspective on what you are going through. And you do then have the information you need when you feel you and your husband are ready for this next step.
Sending out best wishes for this holiday season to you and others.
Hi Mim, glad to hear from you again on this thread and the other one. I'm wondering if Dan ever talked about what kind of care he would want at this stage of his life, or if he ever did some advance directives, like a living will giving some instructions about what kind of treatment he would want under what kind of circumstances. I'm thinking that at this point it is probably just a matter of keeping him as comfortable and happy as possible--trying to avoid invasive or painful procedures if possible--probably taking a very conservative approach. It is really hard to know what to treat and what to leave alone--when to intervene and when to let nature take its course. But he should not be allowed to be in pain...I'm wondering if he can still express whether or not he's having pain. That would be a big reason to try to treat whatever is causing it. Very hard to figure these things out.
Oh boy sympathize with you. Feel I am right behind you so find it hard to even think about those descisions. This desease is so different for everybody. Lisa cannot follow any simple directions or comprehend anything. Eating well does not necessarily mash everything up but it is messy and she loves to eat. Has put on weight in the facility and actually now has a little pot, still slim and still beautiful. Walking not s problem yet but notice she is. It as sure on her feet. Basically she is healthy and looks good.
When she was capable and knew what was going on she would say to me "I just want to die, I am ready". Good luck with this tough descision Mim.
Well, I think I have decided to go ahead with Dan's out- patient surgery, scheduled now for January 19 (I think). He has regressed some from the original cystoscopy/hospitalization...seems more blank, non- responsive to anything we try to say, seems unable to follow a very simple command such as raise your arm. I think the anesthesia will probably make the decline even more pronounced, but I'm afraid if the surgery isn't done, it will cause more problems/pain down the road. If they find that it's something more than a kidney stone/spot in the bladder, well then...we go more to the comfort care. My son said something that really made sense to me. When we were discussing it, & I was worrying about more decline in the AD, he told me "Mom, his brain isn't going to get better anyway. He's still going to decline, although this might make it happen a little faster. Is that really a bad thing, under his circumstances?" I have to agree with him. So that's where we are...oh, I forgot to mention that he seems to be eating less, not as interested in cookies! He looked suddenly older & a little wrinkled. He has been a nice looking, healthy looking man until just the last few weeks. Even the doctor has been amazed at how physically fit & strong he was. How sad to watch him become so frail.
Looking back over the above comments: Dan never acknowledged or realized that anything was wrong...completely unaware. He never discussed his desires about "old age". In his mind, he was never going to get old. I mean he always said that! We have our wills, living wills, POA's, now a DNR for him, but most of that was at my insistence. The medical decisions & final arrangements are mine alone, doing what I think best & what I want for myself. Of course now he has no idea about any of that.