Well I'm beyond scared!!! Doctor is putting him out on disability March 17. Doctor is starting him on namenda and increasing donepizel again. He is at stage 4. Doctor said that he was very glad I kept the notes I did as it really helped. I have no idea how I'm going to do this. I feel like my world is crashing do around me right now. I just want to cry!!!! And crawl into bed and pull the covers over my head!!! Maybe when I get up this nightmare will just be a cruel joke.
So sorry to hear this, and you must do whatever you need to do to relax a bit, mentally escape,(cup of tea, stare out window, read trashy paperbacks, long nap, word find, crosswords, surf the Net etc.) and be ready to come back and give it a shot. That's all anybody can do--nobody is ever ready for this stuff, but people here are knowledgeable and will help.
Will he be able to stay home alone while you are at work? If so, are there safety precautions you need to take, like getting rid of the power tools or the lawn mower. Will he still be driving? If not, you'll have to figure out a way to get him to stop. (We've had long discussions about this stuff on these threads.) Take a long deep breath, and start making some to-do lists, maybe under headings like "Safety", "Finance", "Estate Planning", "Medical." And so forth. If you don't already have one, start a binder where you keep track of all his "case management" stuff. Who he has appointments with, what transpired, what they said, new orders, etc. Keep running documentation. Who you've spoken with on the phone (time, date, name, what about.) Keep an updated med list--if you have this in your computer, you can make copies for health care entities that need to see it--easier than re-writing every time. Keep all your dementia-related names and phone numbers and email addresses in there...the attorneys and social agencies contact information. Take the binder with you to all appointments, and have it by your side for all your "case management" phone calls.
If you're not on top of the money, like if he has always taken care of the bills, etc., you must take over the finances. Make sure he can't get into the computer to do online transactions. Or make sure he can only get into one account that you keep open without much money in it, in case he does not want to turn things over to you. Your durable power of attorney is an absolute necessity, along with the will and the health care proxy...or whatever advance directives are deemed necessary in your state. It varies state to state, and Canada is different.
Others will be chiming in, I'm sure, to help support you with tons of wise counsel and sensible, "been there, done that" advice. You Will get through this. Arms around.
I know exactly how you feel, somedays it does feel like a nightmare. I would wake up and feel such dread it was a pit in my stomach. Good days will follow and than some bad days. I'm home with my Dh and I wish I was working. Ok maybe it's the grass looking greener. I would encourage you to try hard to keep working. What worked in the beginning was to keep the both of us up and moving. Take a breath and try hard to take one day at a time.
I agree that there are many advantages to working as long as you possibly can. It helps keep you sane, gives you an added support group--assuming that the folks at work are supportive--and keeps the years going to build up your own Social Security for later. Even if a big chunk of your salary goes to pay for home help, it may be better to do that than to quit work before you need to. It is not good for you to spend all your time-- hours upon hours upon days upon years with someone who is not mentally intact. Having said that, I would really try hard to enjoy the "good stuff"--whatever it is for you as a couple--as long as you possibly can. And you will find that there will still be nuggets of "the good stuff" when things have progressed to where it is mostly all "the bad stuff."
Breath susan just breath. There is on one answer no right way or wrong way we are all individuals and each situation is different. Some of us reach the point where our spouses need to be in care others feel they will take care of their spouse until the end each route is ok. We all have different breaking points.
You will get through this we all will. You are a young woman and at the end of the day you want to be able to pick up the pieces and move forward with your life there is nothing wrong with that. One of the best pieces of advice I heard when I was starting down this journey "Alzheimers may get one of us but I will be dammed if I will let it get both of us". Remember that and take care of yourself.
We are here rely on us we all need the support of each other.
Thank you all for your words of encouragement. I just realized today is the one year anniversary of his dad's death. He had Alzheimer's and fell it caused a brain bleed and he never recovered. I'm sure that I will get through this with your help and support.
SuzG, The day my husband got his official diagnosis was the last day he ever worked. My head was spinning and I was in a panic. What helped me was to start making lists of what I needed to do that was most important. He had sick pay built up so I didn't have to panic about the money until his sick days were used up. When that was close to being exhausted I needed to make sure the STD paperwork was in and approved. As elizabeth said, my first order of business was the will, POA and advance directives. Having the POA is critical to getting everything else done without a hassle. I already handled the finances so I also agree with Elizabeth that it should be one of the items at the top of your list. Everything doesn't have to be done first. I was also (and still am) working full time. I had the insurance so it was critical to maintain that. That is something else to consider, if you also carry the insurance you will have to continue working to maintain that. Taking a day off to clear your head, gather your thoughts and get a few things done on your list can be extremely helpful and something you may want to consider. You will feel a huge relief when you feel like you have accomplished some stuff. It will all work out and there is lots of encouragement and helpful advice here when you need it.
It's 1:30 and he's wide wake. He can't get his mind to shut off. I hate seeing him like this. It breaks my heart!!!! I have been doing the finances for years. We have a meeting with the lawyer to update wills. I already have all the other documents POA and Medical POA they just need updating but I have them. I have my lists of to do items as well. I'm slowly checking them off. I'm getting used to the idea of asking for help. I started with my brother in law by asking him to sell some items for me truck, tractor, and 5th wheel. I told him I can't do this with everything else that I needed him to just handle it and he said he would that's a big help. No to just get DH to get some sleep so I can as well.
Could your DH watch TV? I know with Amazon Prime and Netflix people can watch all kinds of things 24/7. Then possibly you could go and sleep in another room? My husband and I were a very close couple, but he was never a good sleeper, and as things progressed, he stayed up later and later watching TV in the bedroom. He was retired, but I had to get up and go to work in the morning. So I finally started sleeping in another room, just for my health and sanity. It's not ideal, but maybe your husband would understand that if you fall asleep at the wheel...that is not going to help anything.
since the aricept was increased and namenda added, be aware if there are any negative changes. Also, they are designed to allow them to stay cognitively functioning longer while the disease rages on but they can have the opposite effect. There are spouses in this site where their spouse was on aricept and had the opposite effect mainly in behavior. Another learning we do is to be the 'doctor' too. We live with the 24/7, we see changes the doctor doesn't. We also have to make decisions sometimes whether to stay with medications that are not life needed (like insulin). Even statin drugs can cause memory loss just like AD will. My husband was put on one and in the 3 days could not remember anything he had done that day.
Yes, it is overwhelming and a lot of education needed. I have received more education from this site than I would even get from books and especially the doctor.
When my husband was put on Namenda it seemed to make him a little more energetic and more animated...but he was still as confused as ever--just a little more enthusiastic about doing things he wasn't supposed to be doing. I was definitely not impressed.
Driving home today I had the thought that maybe he will settle down once the stress of work is gone. Hoping that helps. It is really hard and stressful for them to try an act normal. My husband really relaxes around others with dementia cause they don't have to try to be normal.
Thanks. Yes he did. He had a good night last night after he told several people at work. They were all shocked and very supportive. He said the next three weeks will be much better.