There has been a bit of a lull in the crisis mode around here - enough to give me the emotional strength to finally write a blog. I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I do think that many of you will be able to relate to the situation and frustrations I have been encountering.
elizabeth* 9/2/14 Oh, yea-a-ah. Boy, can I relate. DH was at home, but other than that, I almost could have written that blog. We had a couple of episodes of agitation, aggression, combativeness, and actual attempts to hurt me that led me to feel that DH was already gone, and some kind of Alzheimers demon had taken possession of him. But trying to deal with what was, of course, the progressive brain damage of the disease would not have been so bad if the "professionals" would have listened to me and factored in my input when prescribing his meds. No matter what I said--til I was blue in the face--they always assured me that what they were doing…this little adjustment..this little increase..blah,blah, blah…would be the magic bullet. Yeah, right. The doctor and the pharmacist who never saw DH were the ones making the medication decisions, and nobody was listening to me. Things finally changed when the nurse happened to come over and see the agitation I had been describing over and over. Then guess what? The Seroquel and Depakote were increased, they finally started the morphine, and the behaviors settled down. It only took them until six days before he died to manage his medications appropriately. Hospice was a godsend, but their medication management left a lot to be desired.
After reading the posts that have appeared on this subject in the last five months, I can only conclude that these "professionals" have no idea of what they are doing. So the only way they can deal with this is trial and error -- really, sometimes it amounts to a crap shoot. That's not their fault. No one seems to know how best to handle this behavior. But it IS their fault that they pretend to know and that they exclude the patient's closest family member from the decision-making process.
Joan, My DH is still at home, and he is still for the most part non aggressive, but your blog resonated with me just the same. As we move ever closer to placing my DH, I fear first the aggressive behavior, as he loses the filter that controls his frustrations, and then the over medication to control that aggressive behavior, all because he can't articulate what is bothering him and why he is frustrated.
Charlotte - My father never went to a doctor - said 'let the practicing physicians practice on someone else.'
As for this topic - been there, done that. Of course it was years ago before today's meds, etc were available. I found some doctors simply did not understand dementia, AD or otherwise. On the other hand, a few did. Early on I felt, and still feel, that anyone in the medical field should have a course in dementia because they will run into it sooner or later.
Trying to talk to some of the "professional" caregivers is like taking a knife to a gunfight. We can't win. There is very little training or understanding of the disease. We know we cannot win this war but I still think we should be listened to as we care enough to continue to fight the battles. After 3 and a half years of DH being in LTC I have seen a lot of families, who frequently questioned the care the staff decided on, be given notice that they were no longer able to meet the patients needs. That leads to finding another facility and going through the same nightmare again. I wish we could look in to our spouses brains and see how they feel about the medication. I can only hope they are enjoying the peace so they do not have to deal with being agitated by the staff. Being compliant is what the staff wants and without reasoning skills our spouses have no way to comply. The staff sees them as a chart number and how they are, while we see them as a loved one and the way they were. Good luck, Joan, keep fighting the good fight. Hope another good concert comes your way soon.
I can fully relate to your post. Fully. A retired nurse said to me the other day, "It is so great what a strong advocate you are for Duncan, and you have hired a consultant to help you, and all the rest of it. However, you are part of a system [health care system] that is like a big steam roller and it is going to roll right over you."
That is my reality. I often feel like I am beating my head against the wall and it is a horrible feeling.
I keep up with my strong advocacy role try to be fully involved, question, suggest, etc and it is a fine line as AliM pointed out.
Joan, I can relate, as you know, but I cringe to think that the aggression can escalate to that extent as the disease progresses. Yes, Im still learning. They are increasing my DH's meds now and although he is calm for long periods, he will have a major flip out for no apparent reason. He is going to stay in the psych ward for about 3 weeks now to closely monitor his behaviour to see if he can go that long with no aggression. I do want to be informed but I have no idea about decisions that need to be made about the medication other than I never want to see him slumped over a chair out of it. Meanwhile, I have to look for another care facility as he won't be going back to the one I started him at. 3 strikes and your out, I guess. Im just grateful that he isn't going to be sent to a behavioural specialized unit for aggressive patients. The dr. doesn't think he's a candidate for this action, thank goodness!
Joan can relate to horrors of the final stages. Sue's situation was described as Terminal Restlessness. She was cursed with end statge Alzheimer's compounded by diffuse metastasized bowel cancer. I was able to care for her at home until her last week of life. Never aggressive or even difficult other than the fact she could not sit still. Sleep for her was a rare event, never in bed, just while walking or sitting on the edge of a chair. On three different occasions she was admitted to the Hospice wing of one or the other of our local hospitals in fruitless attempts to regulate her meds and slow her down. I finally I had no choice, but to admit her to a locked down memory unit after the Hospice's MD's last attempt at regulating her meds failed. At one point she caused a lock down at Good Sam Hospital until she was found huddled in a corner, under/behind her hospital bed after the "minder" left her alone going on a break without obtaining a replacement for the few minutes that she was gone.
The locked down unit was not the horror scene one might anticipate and the staff was very compassionate and caring but Sue required a 24 private aide at her side at all times due to her incessant wonderings. Thankfully she found peace 7 days after admittance
Dearest Joan, I finally found the time to read through your blogs, as I promised I would on my FB post. I am overwhelmed for you and I am truly sorry for the horror you and your darling Sid have been going through ((big hugs))
If I may Joan, perhaps it is time for you to call in the Ombudsman office? If the facility and Sid's doctors are making decisions, without your approval, that has to be stopped ASAP. An Ombudsman can be an advocate for you and Sid.
Lynn's facility, his doctors, and anyone involved in his care, knows that I am not only part of the team, but that I am the damn Captain of the team! NOTHING is done without first getting my approval. That is how it should be, and needs to be.
Never in my life have I been so aggressive and assertive! It is so odd to me how I have gone from someone who truly tried to avoid confrontation at all costs, to someone who is constantly ready to go to war to defend Lynn. Each of us, are warriors in our own right!
Give Sid a tight hug from me.. and here is one for you ((hugs))