I am back again after two years! My husband has vasclular dementia and in stage 6 of Alz. He had a small stroke and TIA's off and on. He is on Aggrenox and Sinvastatin. ( for chloresterol and plaques )
Question is: Should I take the advise of his doctor and cease the medications mentioned above to prevent stroke? His doctor advises that we should not prolong his life with these medications now that he is in this stage.
The doctor thinks the humane thing to do is to let a stroke take him, and states that after a stroke the chances of living and going through stage 7 are slim.
I really feel that I need objective advise as well as family advise.
That is a big decision for the Dr. to hand you to make.My DH is stage 6 also,but so far in excellent health.I have had people tell me that after a stroke their caretaking of AL patient is easier. My DH is on 50mg.of seroquel to help him(and me) to sleep. No side effects.I pray you can make a decision you can feel good with.Good luck.
My personal inclination is yes, I might take the doc's advice. A couple years ago I ran this same concept by the Neurology NP treating Jeff, and her take was that a stroke could leave him in a worse and harder to care for place that he was in at that time. He has since slid quite a bit farther down the hill, and I think I'd feel differently now. It's a very personal thing and it's very hard for us to judge anyone's quality of life, isn't it? You have to give YOUR gut feelings about this higher weight than doctor advice.
Rosie, a very difficult decision for any of us; only you can make that decision and hopefully you'll consult with trusted family members and friends so you will have support whatever the decision. My husband is also in stage 6, but in good health. I cannot imagine it would be easier to take care of a dementia patient who has limited/no mobility after a stroke. Unfortunately no one can predict if the stroke would take him or just leave him physically compromised. Good luck with this difficult decision.
Rosie, it is a hard place to be. I was fortunate that my DH and I had discussed his wishes about end of life measures. I used his decisions as a guide. The first time Hospice was aboard we stopped his cholestrol med and Plavix. They explained that in these later Stages instead of helpiung they can coontribute to internal bleeding when falls become prevalent. Other basics, vitamins, etc. also were stopped. Meds to ease agitation, anxiety, were kept--comfort in mind. From the time of DX with VaD in 2006 until his death last July, I lived on High ALERT. I'd been told his Dx and that a major Stroke or Heart Attack could take him at any time. Frankly, I wished for that, because I'd already heard of and read of the long drawn out death process Dementia patients often go through. I didn't want that for him. Had no idea how I'd get through that--only that I would somehow. A new vasdcular issue presented--CHF, caused by Aortic Stenosiss already Critical at Dx. Because of the VaD, surgery to fix it was not on the table. The Dr.,described how that Death would be---see weakening, increased resting, then as rest or nap, just slip away. He expected us to have about a year. DH slipped away a month later--peacefully, quietly, easily. I am okay with that. We were blessed.
Rosie, so sorry your dh is reaching the end stage, but that is the nature of this condition. It is terminal and most of us have known this for years. My dh also had vascular dementia and AD. My dh and I had talked many times about leaving this world and we both agreed, that our names were in that big book and when it came our turn we had little control over what happens. We also both agreed we didn't want to attempt to prolong our lives if we were just "alive" and couldn't enjoy ourselves or know what was going on around us. Based on these discussions the final decision was clear to me even though it was very difficult, when I began eliminating his various medications with the approval of his doctor and often times the doctor suggested I discontinue various medications. Maybe it might help to ask yourself what would you want if you were in his position? Also, ask yourself...is leaving him on the medications going to be any real advantage to you and to him? Only you can answer these question. My dh also had many TIA's in the last few weeks of his life. I couldn't say it made it easier or more difficult because I had no experience in this area except to know it he wasn't going to have a life after the TIA's and the worsening of his total condition.
Personally, I just wanted it over with for his sake as well as mine. Consequently, once I accepted that factor, I was calm, cool and collected making his final weeks and days the best I could for him. It gave me such peace to know I was doing what he wanted and what I would have wanted. Is it easy? No....but, it is going to be the end sooner or later. My prayers are with you and may you find peace in your decision
Do you have hospice? One thing I know for sure, having hospice on board was the best decision I ever made and it made it so much easier. I knew I had someone to call 24/7 and they would send someone to the house when I needed them...they provided me with the medications I needed to make it as easy and comfortable for my dh as it could be. They were a blessing beyond belief.
Many thanks for your comments. I could cease the meds. IF I just knew whether or not he would linger a long time after a stroke. That is not possible, I know! However, I do have good insurance to cover most of the cost of a care center if that were the case.
I am leaning toward quitting the meds. and maybe for my sake too.
Two nights ago he nearly started a serious fire in our kitchen when he was alone for half an hour, and last night he wandered off while were were in an isolated canyon on a picnic. He was not found until way after dark. It scared me to death with only 4 of us left to search as the temp dipped and darkness came on.
Most of these mishaps are my fault, but sometimes I get too tired to worry about him and then the guilt sets in.
Time and advise from you all, and family, will surely help me make a decision. Many thanks.
its a difficult decision but i also would be concerned that a 'stroke' or cardiac arrest would leave them in a worse state. but then of course you can get hospice for comfort measures only. we have discussed at times the 'benign neglect' thought process here which entails a decision to make which envolves not treating medical issues that could cause death. good luck in your decisions. at stage six they still can linger many years. we are into year 3 at late STAGE 7. !
Rosie, I am not adding to your guilt and we all have to do what's best for our own situation, but I am surprised you feel comfortable leaving your dh w/o supervision at this stage. Yes it's tiring but perhaps you can get some help to supervise him if you can't. He is still your responsibility. It was serious that he got lost until after dark....This a a very different issue than withholding meds.
I'll go back and read others observations later, but from where I sit at this moment, my DH being about a 4+ but not quite a full 5, my answer would be if the meds are keeping him stable I would not stop them at this point. My husband also had a stroke, a small one but a full stroke. I have seen people who have had serious strokes and are left so handicapped that it is beyond sad and they were healthy before the stroke. I don't think these meds are prolonging anything at this time assuming he is otherwise stable. This is a tough decision this doctor has tossed out your way and I am not so sure that it was a fair thing to do to you.
I have seen the damage a major stroke can leave and it does not necessarily make for a quick exit and the additional stress and sense of guilt you might feel is something you don't need to carry. Do what your heart and gut tells you is right.
When I see the unhappiness in my l.o.'s eye's, I feel so sorry for him I can hardly stand it. I truthfully am not sure what I would do if it was in my power to relieve him of his misery and still be within the law. I can't wait for him to be in such a state that he doesn't know anything. Isn't that a horrible thing to say? I'm tired of having to be so strong. But it gives me purpose, and at least my nights are good now that he is the nursing home. It helps to remember to stay positive!
There is nothing about this that is easy. We feel guilty when we snap at our LO because our last, in my case, raw Irish nerves have had it, or we are just plain pooped from the unending tasks that are more complicated as the days go on. And when we are faced with placement, then we beat ourselves up because we think we should have been stronger so that we could soldier on with our LO at home even in the face of how difficult it has been. And then there is the lonely evenings..when we have time to sit and watch TV without our LO constantly switching stations because they really can't follow the theme of the program and need to just see action be it car chases, fist fights, you name it.... We just can't win.
After thinking and asking for opinions, I finally realized the other night that I was not comfortable with taking him off his stroke meds. Since then I am calm and sure I am doing the right thing.