I know there is a thread about this, but could not find it in the search area. Can someone direct me to it? Basically, my DH's parents are very upset with the meds he is receiving and do not agree with anything that is going on. Quite stressful, as I often don't know what is best for him either.
I have to go out now for a couple of hours. When I return, I will look that up for you - I'm sure I wrote a blog about it too. Sorry I have to run. I will answer in detail when I get home.
Alice, I don't know for sure what to look under either, for a thread or 2, but I know, from my own experiences with my hubby's family, that you can't let them buffalo you. They care. We know that. However, you are the caregiver for him and are living with the disease and what it is doing to him. The meds the Dr.s prescribe are basically designed to ease symptoms and in some cases delay the progression. Some will work better than others. You are the one who sees their effect most clearly and must consult with the Dr.s if there are issues.
Dealing with his family will be stressful, especially so until 2 things happen. Each will help the situation. One is that they finally accept his diagnosis and what it is doing to him. That's a really hard one. The 2nd is that you find a way to face them down. I had to do this when several of my hubby's sisters actually interferred in a way for potential endangerment. I had been trying to keep them informed of how things were going and going the extra mile to provide supporting sources for my decisions, which they could check out. When they interferred inspite of my efforts to keep them in the loop, I changed tactics. I told them that from now on, I would keep them informed of any major changes. They are welcome to stop over and visit, and help if they can, but I, as his wife and Guardian would be making the decisions needed in consultation with the professionals involved with his care and that if they couldn't accept that coming from his wife, they would have to coming from his Guardian.
If you can get members of his family to spend blocks of time with him, not just a visit, their eyes should open to his difficulties. He is probably still able to mask them for a couple hour visit, but not for a whole day or a weekend. With POA in place or even Guardianship if necessary, you have the say, because he is no longer capable. This is a huge responsibility, but one we can do for our LO. We don't always know what is the best for them. And sometimes our choices are a matter of what is the least bad. We get all the information we can and do the best we can. No one. ncluding ourselves can expect more from us. The bottom line is that his parents don't have to agree with his treatment. It is your call. As long as you know you are getting all the info you can and are making the best choices you can, you need to let that stand.
Alice, being new to the forum I hadn't seen the post your asking about. But just wanted to say, I have been thru some of the same stuff with Dh's Mom. I basically blow her off. Cause I can't fight her denial and all the other junk she thinks I am doing wrong (she thinks I should put Dh in every trial study that comes along) I am of the attitude that sometimes not all the pills a doctor hands you are actually good for you and honestly, I need all the energy I have to help Dh fight for some sense of normal for as long as I can. Explain to them you are doing the best you know how and that you don't need the extra pressure. Your already fighting a huge battle against a disease that is fighting back at "all " of you, and that even the medical world doesn't have all the answers. I thank God for a wonderful sister in-law (who's a nurse) that basically told my MIL to back off, because she knows I am only trying to do the best for my Dh. No do I have all the answers? ummmmmmmm, No! Will I make mistakes? Sure! But I am trying as I am sure you are, don't let your in-law's make it even harder on you. Your doing the best you can. Hugs and Prayers! Rk
Thank you for your words of wisdom. I agree but sometimes the pressure makes you second guess your decisions especially when you don't quite agree with the doctors. My DH is in the hospital (psych ward) for adjustment of meds and he just seems to be worse. The IL are from out of town but come down to visit often now. He came out of a memory care unit (locked) in an ALF and that is where he needs to go back. He went downhill so fast since they last saw him and I think that makes it really hard for them to accept. I already have all the legal documents I need (POA, health care surrogate, guardianship) so my DH wanted me to have this when he was still capable of making the choice. The emotional aspect of this with the IL is the hardest.I know I need to have a conversation with them soon.
Alice, Unfortunately, some older folks believe if you say it isn't so, then it isn't. When my mother-in-law started showing signs of dementia, my father-in-law was in denial, even though her mother passed away from Alzheimer's. She never received the medical treatment which may have extended her abilities longer until it was too late. When my husband started having memory problems we went to the doctor immediately. However, even after what my father-in-law experienced, he still told my husband that he should tell himself that he didn't have any problems. Just recently, he has come to believe that my husband also has dementia.
Sorry this took me so long, but I see that others have given better answers than I could have. I cannot find the thread either, and the blog I wrote concerned adult children, not an AD patient's parents. Some of the issues are the same, and if you would like to read it, here is the link - http://www.thealzheimerspouse.com/emotionsadultchildren.htm
Alice: I found this thread to be helpful when I was at my wits end trying to deal with the seagulls and my guilt and lonliness and unwilling to accept that I did and am doing the best I can with the help of health professionals.
Alice, this problem is one of the hardest I had to deal with on top of dealing with what was going on with my husband. It was his children in my case. They both live several hundred miles away and have only seen us once or twice a year. They were very happy to tell me that I was doing things wrong and that would like to take control (actually they started a legal process to get conserveratorship). For some reason, my husband did not want them involved in his medical decisions at all and was very emphatic about it, nor did he want them talking to his doctors. I respected his choice and they did not like that at all. The end result is that I have lost what I considered part of my family. It was not easy.
For you, you are taking care of him, you know him best, you had many discussions with him on what he wanted. His parents are not part of that loop.
One of the things that I did do that helped me a lot was send out regular e-mails on what was happening to him and what the doctors were telling us. I did get some flak on them occassionally but for the most part, they said nothing. The nice part about sending the e-mails is that it took all the emotions out of it.
There really aren't a lot of good answers to this particular situation. You are doing the best you can and that is all anyone can ask.
Even when things are not going in nasty directions using the email route for group letters works. I did it twice. I let my sister's sons know what was going on by emailing them together. I kept both of them in the loop as long as there were questions. It worked very well. I also contacted my husband's old co-workers as a group in an email in response to something one of them had sent them. He no longer does email, but I've kept that address open and check it once a month or so.
Like therrja said, it takes all of the emotions out of it, and because mine went out to at least a couple of people at once, it also made most of the responses polite or better.